Cole and Me

retarted- what it really means

2012-01-14T19:43:00.000-06:00

I saw this article posted on a blog and had to share it.

http://phoebeholmes.com/2011/12/23/being-retarded/

Peaks and Valleys

2012-01-02T17:17:00.002-06:00

So much for honoring my promise to update more often. Yes, life once again has gotten in the way. Somehow, almost four months have flown right by. As the title of this entry suggests, we've had our share of peaks and valleys over the past few months.

Cole is doing great at his new school/therapy environment. He loves going to "academics" in the afternoons and still cherishes the one-on-one time with his therapists in the morning. We have visited Cole several times and he's worked hard to earn lunch visits from both Pat and I. Every time I visit, Cole is saying hi to all of the kids and staff. He has a nickname (one he's made up) for literally every person at MAC. And he also has a flirty way of tickling some of the female staff. When I was there, he went up to a gal and playfully tickled her elbow and said, "I'm getting your arm." He's very comfortable there and everyone lights up when he greets them.

One thing that's been a challenge is the rides to and from school. For some reason, Cole and another student on the van are not getting along real well. They tease each other, sometimes hit one another and often get loud and silly. It's been a challenge to say the least. Not to mention, the parents of the other child have called a few times to complain about Cole and how their child is reacting to the situation. It's hard because the other child is dropped off first, so by the time Cole gets home, he's calmed down and he's not emotional about anything that's happened. So we've tried REALLY hard to set up a reward system for Cole. We ask the driver each trip to and from how Cole has behaved. If he's "naughty", he does not get a tally mark and he loses a privilege at school. If he's good, he earns a tally mark toward a reward (lately it's been lunch dates and a visit to Santa). It seems to be working for the most part.

We had conferences for Cole a month ago. They could not have gone better. His teacher and therapists showed us Cole's report card. It was his first one ever, and he's in 5th grade. I've attached it to this entry so you can see how well he did. Of coarse it's relative to Cole and his goals, but we'll take the great progress and positive comments. When the teacher brought it out at the conference, I had to fight to keep my composure. I was SO PROUD of my not-so-little guy. There was a time when I never thought he would receive a report card, let alone one of this nature. I wanted to show it to the world.

They also showed us a lot of the academic work Cole has been doing. It's incredible. He's getting very high scores on his spelling tests, mostly perfect. He's reading and comprehending. And his math skills are significantly improving! He took a test on parts of the body and only got 1 wrong. It's so rewarding to see all of his hard work. And he's so proud of it. When he brought home his poster from when he was the Student of the Month, he went right into his room and pinned it to his wall. It's still there today.

The hard thing about transitioning to 1/2 day of school is that we've lost our in-home therapy sessions. It was at these sessions where we worked with a therapist on implementing Cole's behavioral plan, among many other things. Once a week we were given a lot of instruction, advise and help. Cole took it very seriously and now we don't have that anymore. Little things like cutting his toe nails, following through on stand up sit downs, wearing long sleeve shirts and doing academic work at home are all suffering.

We've seen an increase in Cole's aggression, non-compliance and silliness. We're trying hard to stay on plan, but it can be very difficult at times. He's getting so big (97 lbs) and strong (he can pick me up and carry me down the hallway). The change of seasons and even one day off from his typical routine can de-rail Cole for days. When you add this to the chaos of the holidays, it can be a disaster. As was Christmas Eve....

Christmas Eve was a valley for us this year. The day started out ok, but given the fact that we had absolutely no snow and Cole went through his list of normal home activities, his patience worn thin quickly. He was uptight all day, bossing us around, getting upset at the simplest thing and he was aggressive to all of us, including himself. Couple that with Pat and I trying to get ourselves ready, prepare food, pack up what seemed like 1/2 the house get out the door on time.

Pat left early with Cole and took him to get a treat at the gas station. The plan was for Connor and I to meet them at his parents (we take two cars so we have an "escape route" for when Cole needs to leave early). Pat got within 1/2 mile of his parents and Cole insisted on driving 20 minutes back home so we could all ride together. He was screaming in the car, kicking the seats and hitting himself. So Pat called me and turned the car around. We packed up the car, with Cole upset and controlling who drove and where we all sat in the car. We got to Pat's parents and Cole seemed pretty happy. He greeted everyone and we enjoyed some time before the chaos began. Once everyone arrived (there are 6 boys between the ages of 10 and 5), it got a little loud and hectic. As to be expected with six excited little boys and the adults prepping food and socializing. It's difficult to explain how and why, but Cole almost instantly got uptight and very short-tempered. He yelled a lot, threw things, made tons of demands and was very non-compliant. Pat and I literally took turns staying within a foot or two from him at all times. That meant virtually no adult conversations, missing the adult gift opening and laying on the floor with him in a back room of their basement.

All the while Connor is just settling into playing with his cousins and the new toys they received. They were excited and at times behaving as boy cousins do, there was some fighting and heightened voices, etc. This really upsets Cole. He wants Connor to play with him and when the cousins all get together, unfortunately Cole often gets left behind. And when voices get loud and kids act the way kids do, he gets even more upset. And so do we. It's hard not to and it's certainly not anyone's fault, but we are human and we too, have a breaking point.

So after trying hard to stay as long as we could, we quickly had to pack up our things, say quick goodbyes and head out. We tried to have Connor, Pat/Connor or me/Connor stay and get a ride home, but Cole threw a HUGE fit in the car at each suggestion. And I mean HUGE. You wouldn't believe it if you saw it. He was literally beside himself. So off we went, all upset, sad and disappointed. After Cole calmed down, the ride home was very quiet. I have to admit I was shedding some tears. Feeling sorry for myself or not, this just isn't fair. It's not the holidays I want for myself, my husband or my kids. And I'm not sure we'll ever find a solution.

As we were pulling into our development, Connor said to Cole in the sweetest voice ever, "Cole, you've done such a great job on the way home, I bet Santa will bring you a lot of presents." Then he asked me, "Mom, did I say the right thing to Cole?" Now if I wasn't crying already, this made it worse. How is it that we are blessed with a little boy who, after being hastily torn away from Christmas Eve with his family, is thinking more about his brother than himself or what just happened. I could only shake my head yes after he asked me twice. I was crying too hard to speak.

Christmas morning went pretty well. Santa brought lots of wonderful presents for the boys and Cole was really excited to play with his new toys. We made a nice breakfast and hung out for a while. But then again, Cole had gone through his list of things to do and was bored and full of anxiety about when people would be coming to our house (and we had 4+ hours to go!). So again he was very short-tempered, mad, mean and non-compliant. Again we had to take turns staying within a few feet of him while trying to get ready and prep for a house full of guests. At one point, I considered telling our family to go on without us and move it to someone else's house. Yes, it was that tough. But we powered through it and after people started to arrive and Cole's energy tuckered out, he calmed down and behaved quite well. He had a great time opening gifts and loved going ice skating on the pond with his family. He learned to self-regulate and although he didn't sit with us at dinner, we got to enjoy it uninterrupted while he played the Wii downstairs.

A peak happened a few days later when we went to Pinz with Pat's extended family. Again, we were expecting a tough go, so we drove separately. Turns out we didn't need to!! Cole did fantastic. He arrived with Pat's parents and after getting lost, we arrived a short time later. Cole was super excited to bowl with his cousins and talk to the other family members. He got excited at times, but he worked very hard so he could "earn" a game of laser tag. It was nice. Pat got to chat with his family for quite a while and I got to make a few rounds myself. Toward the end, we even stepped away from the bowling lane and let Cole bowl a few times by himself. He had a great time and loved playing laser tag. It was a huge success!! Just look at the cute picture of Cole with all of the 2nd cousins on the Niemczyk side!

Our new year was pretty low-key. We hung out at home with the kids and didn't do anything exciting. Cole was thrilled when we actually got a little bit of snow. He was out in full force, plowing the driveway and street. Then he came in and crashed. I don't think any of us made it to see the ball drop. Sleep is more important when you're oldest wakes up around 6am, firing on all cylinders!

I hope our Christmas experience makes you realize what is truly important about the holidays- sharing QUALITY time with your loved ones. Don't take it for granted if it comes easy to you and at your free will. Unfortunately this isn't in the cards for our family. Maybe one day it will be, but sadly these days are typically the toughest for Cole and us. I honestly would give back every single gift I received if I could have enjoyed the company of my family and had the pleasure to watch my boys play with their toys and cousins.

God Bless and Happy New Year!

Cole's school project

2011-09-14T12:22:00.001-05:00

Cole had his first EVER homework assignment last night! At school, he decorated an "All About Me" box. He put construction paper, glitter and all sorts of drawings on it. He task was to put things that he likes inside the box so he can show and tell about it at school today.

So we found a small John Deere tractor, put a chocolate chip cookie in a baggie, added in the empty Toy Story 3 DVD case and an empty package of "pink gum". I decided there are so many more things Cole loves that just wouldn't fit inside the box. So I went to google images and our photo library to put together a small collage of just some of the things Cole likes: bonfires, his green razor scooter, Nick Universe, a picture of him tubing and playing at the beach, an iTouch, a picture from a play date with his best friend, Marc, YouTube (a favorite pastime for Cole!), his team hockey photo and pictures of him at the Noble Farm and driving a pontoon boat.

I printed out the collage and Cole saw it. He was SUPER excited and rattled off everything on the page. Pat and I looked at one another, happy and so proud- for SO many reasons.

Most of all, because Cole has so many things he loves in life. He is such a happy fella and knows what makes him happy in life. This didn't come easy for him. It has taken countless hours of ABA therapy and hard work for Cole to learn how to enjoy age-appropriate activities. Just two short years ago, Cole was newly potty trained and still liked to watch Baby Mozart DVDs. Now we are able to reason with him and tell him he's too old for them. He knows that big kids don't wear diapers and they don't watch baby movies. He has learned to play his Nintendo DS and he navigates both the iMac and iTouch with ease. When kids come over to play, he can hang with them and play the Wii or other fun stuff. Up until the last 18 months, we never had kids over the play unless Cole wasn't home. Now THAT is progress.

Progress is not all about Cole learning to read, looking at me in the eye or learning not to make funny sounds at inappropriate times. It's also about him enjoying life and being happy. As his mom, that is what I care about most. I love that every single morning, he asks me to snuggle and "get my neckie". Even thought he's ten, he still lets him shower him with countless kisses and hugs every single day. Cole tells me all throughout the day that he loves me. He tells us he will miss us and always wants to know where Connor is at and when he's going to be home. He loves to have Pat wrestle and tickle him. The sound of his belly laugh is the best.

I love hearing him laugh at YouTube, or now even ask me to come in so he can show me the cool lawn tractor video he found. Just last night he called me in to show me a video. He said, "Watch Mom, they will get the Toro started. It will start soon." The tractor back-fired and Cole laughed and laughed and laughed! I love to see the boys snuggle on our big bed, ask for popcorn and lay together to watch a movie. A movie they BOTH enjoy. I love that Cole wants to help our neighbors mow their lawn- even if at times, he tries to do it when they are enjoying dinner on their deck. He knows their tractor is broken and he has saved them many hours by helping them out. I love that Cole can knows who sings songs on the radio. He hears one note and can tell me who the artist is. If he likes the song, he'll ask me to put it on his iTouch. His favorites come and go but he can always tell us what he wants to hear. And I love that for the first summer EVER, Cole wore shorts all summer long. He finally understands that it's more comfortable to wear shorts when it's warm and sunny. Now we're actually having a challenge to get him back to wearing jeans.... we never thought that would happen!

I could go on and on with things I love about Cole. And I could have added many more things to Cole's "What I Like" list. But there was a time when I couldn't write about all of this progress and I wouldn't have had many things to put on that list. As parents, Pat and I were simply overcome with pride last night as we listened to Cole chat about all of the things he loves, us included.

We are so blessed.

a new goal

2011-09-02T16:49:00.001-05:00

My mom reminded me last night that it has been 5 months since my last blog post- WHAT... how did that happen? I can summarize it one simple word; LIFE.

I set a goal for myself to update my blog much more frequently. Selfishly, I know it will be a great tool to look back in the years ahead and accurately recall many of the moments along this journey.

A lot can happen in five months...

Cole has continued to make remarkable progress and is spending his last day at full time ABA Therapy today. He will start at the new MAC School on Tuesday. It will be 1/2 day of ABA therapy and 1/2 ABA-taught academics. We toured the school last night and Cole could not be more excited. It's very rewarding to move on to this next phase.

Pat has a new job! Congrats to him on his promotion to VP of Sales and Marketing. He has worked incredibly hard and I couldn't be prouder of him.

Baseball season flew by (Connor's team won the championship!) and now we are weeks into football. Connor's hair is now bright blonde- a sure sign summer is on the way out!

5 months ago I was nearly 30 pounds heavier. Yes, with the help of Weight Watchers, protein shakes, support from family and friends and countless visits to the YMCA, I've shed close to 40 pounds since January! Woot woot!!! Now my goal is to maintain, which is 10x harder than losing the weight. When you're trying to lose, you have the motivation of seeing the scale go down. Now I need the scale to say where it is. Wish me luck!

We've had a really great summer. We packed A LOT into those 10-12 weeks. Here are the highlights:

JUNE

Cole went to Camp Dodge. It was a camp for Autistic children that was held at a nature center/farm. He loved it and made a lot of new friends. He continued his full-time ABA throughout the summer and particularly enjoyed water days! We also met his best friend, Marc (a friend from MAC), at Como Town for a play date. It went really well and now we meet once a month.

Connor spent a lot of time playing baseball. Pat coached his team this year and they had a lot of fun. He also moved up a level in gymnastics and practiced 3 days a week, all summer long! He and I spent a lot of afternoons at Bunker Beach where we often met up with family and friends. Oh how we love that place!

As a family, we went down to the Noble Family Farm in Austin, MN. It was so much fun! We rode dune buggies, the 4-wheeler, moved the lawn and rode the big tractor. The kids all played in the sprinkler and also spent time swimming at the hotel pool. Cole loved going up and down on the elevators in the hotel! We are fortunate to be going back tomorrow for another memorable stay.

Sadly, on June 28th I lost my Grandma. She was 98 years old. It happened very quickly and although she was ready to go, we weren't ready to let her. I'm so thankful we were all there to say goodbye, hold her hand, give her kisses and be with her as she passed away. She was an incredible woman and the boys miss her terribly. Cole knows that GG is living above the clouds and he wants to go see her. I keep telling him he needs to wait for a really long time before that happens.

JULY
We started out the month with both the Schusted and Cooney extended families heading up for a week at Cabin O Pines (COP). COP is the resort in Orr, MN which is owned by my sister-in-law's family. It's our second time up there and we all love it! It was really nice to have the Schusted's up there as well. We had remarkable weather and spent a lot of quality time at the beach, boating, fishing, playing yard games, going on scooter rides, biking, hiking and enjoying each other's company. Cole was there from Sat - Wed. He was really excited for the 4th of July fireworks on the lake and he loved having all of his cousins there to share in the fun! We can't wait to go back again next year.

Connor's baseball team played in the Tier II tournament. After only winning two games all year, they came together in the end (in that horrid 100 degree heat), to win the championship game! It was really exciting. Although I think the kids loved the water balloon fight and pizza party just as much as winning that last game.

Cole also closed out his baseball season. He played in the Miracle League again this year. It was great to see the progress he made from last summer. He really started hitting the ball hard. He thought it was hilarious to run to the base and purposefully fall as he approached the base. What a goofball! He also loved spending time on the boat and swimming in Coon Lake. He loved to tube behind the boat and tells Pat and I we are "too old" to tube! ;-)

AUGUST
After a week of football camp, Connor headed up north with his cousin Max, to go to their first overnight camp. The boys spent 3 nights/4 days at Trout Lake Camp. It was amazing! They had a great time and can't wait to go back next summer. When I asked him what his favorite thing was about camp, he had one word: EVERYTHING!!!!!

The boys went to Target Field with Grandpa Denny and I. Neighbor friends of ours graciously gave us free seats right behind home plate. Connor and I went to the game right away and Grandpa and Cole showed up an hour later. It was really hot, but we had a lot of fun. Cole loves to ride the elevators. And after being there only one time before, he knew exactly where to go to find every one!

Pat and I had our 20 year High School Reunion in August. It's hard to believe 20 years have flown by. It's nice to have gone to the same high school. We have a ton of mutual friends and had a great catching up with them. It's incredible to reflect on how much our lives have changed since graduation... isn't it interesting where life takes you!

The highlight of the month was hands down my brother, Brendan's wedding. He married his wonderful wife, Brittany on August 27th. Everything about the day was perfect. Cole's in-home therapist and I did a lot to prepare Cole for the "dance party" portion of the wedding. We had him practice wearing his dress clothes and showed him several picture stories about what would happen that night. We knew the wedding would be too much for Cole, but we made plans for a PCA to bring him to the "dance party" and then back to the respite house. Like I said, it went perfectly.

The wedding was amazing. I had the once-in-a-lifetime honor of officiating the ceremony. It was one of the best experiences of my life and I'm so thankful for the opportunity to marry off my younger brother to such an incredible woman. Cole showed up around 8pm. He had just enough time to make an ice cream sundae, take family pictures, say hello to everyone and check out the mansion. After that, it was time to watch the first dance and mother/father dances. Cole waited so patiently. Finally it was time to party. He walked right up to his cousin Elle, took her arm and brought her to the dance floor. The kids all had a ton of fun doing breakdance moves, handstands and even some gymnastics. Cole danced with Brittany. He held her hands as they danced but kept his eyes closed- not sure what that was about but it was super cute! When another slow song came on, Cole snuggled up to me and we shared a slow dance. It was the BEST. Shortly after that, Cole said he was ready to go. Pat walked he and his PCA out to the car, where we had a few presents for Cole. He did such a great job that we had to reward him!!

The entire wedding weekend was so memorable and fun. Brendan married a truly amazing woman and she has a wonderful family. I couldn't be happier for the two of them!

SCHOOL
Cole is about to start SCHOOL!!!! He hasn't officially been in school for almost 3 years. He has been in full-time ABA therapy since January 2009. It is bittersweet for him to move on from MAC and full time ABA, but he is ready!!!! We are incredibly thankful to all of the amazing therapists as MAC, who worked so hard with Cole. They have done things with Cole I didn't know would be possible. In his last ITP (therapy plan), he had 17 PAGES off mastered objectives. That is incredible!!!! We will especially miss his lead therapist, Jen, who has worked with Cole from day 1. She has spent one day a week in our home for years and is responsible for teaching us behavior and discipline techniques which literally saved our family. When Cole started at MAC, Cole's aggression was so severe that Pat and I weren't sure how long we would be able to keep him in our home. Now the tantrums and aggressive outbursts are under control and only happen a few times a month. Jen treated Cole like he was her own. She was often moved to tears during our therapy sessions and told me she often wakes up during the night, thinking of new ways to challenge and help Cole. I'm not sure why or how we were so blessed to have her in our lives, but we will never forget or under-appreicate everything she has done for our family and son.

Last night we got to visit the MAC School for the first time. It exceeded my expectations more than I could have hoped for. The facility is beautiful. It's nestled among trees, plants and tons of flowers. The play area is all fenced in and there are three different play sets. Inside the school is beautiful. It's immaculate and painted in all kinds of vivid colors. There is a cafeteria, a gym, music room, library, OT/Speech rooms, Computer rooms and a WII ROOM! Cole impressed everything with his razor scooter skills at open house last night. He also remembered several of the kids from when he was at MAC Minnetonka. He went right up to them and started conversations. At one point, he held hands with Marc and led him out to the playground. This is where he needs to be.

In Cole's 5th grade classroom, there are 7 children, including his best friend, Marc. There are two "teachers" in the room. One is a special ed teacher and the other is a lead ABA Therapist. Cole will spend the first half of his day with the special ed teacher, focusing on academics. While he's there, supporting ABA therapists will be by his side (in place of a para). After lunch and recess, Cole will spend the afternoon doing one-on-one ABA therapy (like he's been doing for the past 3 yrs). Cole will only have 2 other kids with him during the academic and ABA time. That is a pretty amazing teacher to student ratio! They have two huge classrooms to use and areas for individual instruction if it's necessary. The classrooms have huge windows, so there is a ton of natural light.

Cole will start school on Tuesday. We are SO proud of him. He has worked incredibly hard for the past 7 years to get to this point. I'm thrilled for Cole. He will be in an environment where he will be completely accepted for who he is, he will receive individualized educational instruction and make friends who aren't going to care if Cole is more interested in knowing what kind of tractor they have vs what sports they play.

I'LL BE BACK
Thanks for reading this monster of an update. I promise I'll be back more often.

Enjoy what's left of summer!

So what should I say?

2011-03-30T12:46:00.006-05:00

I read the following Facebook status update recently from another Autism mom I know via FB.

"I dislike when people tell me I have a special needs child b/c God knew I could handle it. BS...I don't have a special needs mom gene that makes this easier for me than it would be for the average person. That is just what people say to make themselves sleep better at night. I am just as selfish as the next person. I wish I had been given a special gene...it would make it much easier. I am the same as you."

I couldn't help but read some of the responses to her posting. One of which was, "not being antagonistic at all-just really curious. What is the right thing to say?"

It got me thinking, what IS the right thing to say and what do I think of her posting?????

Certainly I've had many people say things to me like, "God doesn't give you more than you can handle. There is NO WAY I could do what you do. There is a reason why God gave Cole to you., etc." For the most part I agree, God doesn't give you more than you can handle. Somehow, even on the roughest of rough days Pat and I manage to make it through. Dealing with Cole when he is struggling is incredibly difficult. Even our families are surprised at his behavior at times. And yes, there are times when I hear another parent say, "Oh, so and so had such a tantrum last night. It was awful." and I want to ask, "well, has so and so ever broken a window in your home, has she put her head through the sheetrock or punched you so hard it takes your breath away? Has your child slapped you so hard that your arm stings for the rest of the night and bruises the next day? Has he ever had to be carried out kicking and screaming from a hockey arena after throwing water bottles at the crowd, punching, scratching, hitting you and then slamming his head off concrete? Oh and don't forget the popped blood vessels in his face from screaming so intensely." Now THAT'S a tantrum. And yes, it's coming from a ten year old boy who has a disability you can't see. Imagine the looks you get from people.

Autism is very humbling. But that's ok. I've gotten to the point where I can let the public tantrums, the nasty looks and comments roll off my back. I know I'm a great mom and Pat is an AMAZING dad to Cole. We are doing a fantastic job with our son and he is working incredibly hard to cope with the numerous struggles that come with his disability. And the people I love and care about most know that, too. I'm not worried about the lady who gave me a dirty look last night at Jam Hops when Cole continued to kick the indoor fence after I asked him not to several times. I am not a bad mom who does not discipline her children. In fact, I'm damn good at being a mom. I know that, my husband knows that and so do our families and friends. At the end of the day, those are the people I care about. They see how deeply we love our son, they know the mountains we have climbed, the hoops we've jumped through and the daily struggles we overcome. My energy is better served focusing on my family verses worrying about what some person at the gas station thinks.

As I said above, many people have said, "I don't know how you do it. I couldn't." YES YOU COULD and you WOULD. It all boils down to one absolutely wonderful thing: unconditional love. I love Cole with every single cell in my body. It is this overwhelmingly powerful unconditional love for Cole that motivates Pat and I to make his life the very best it can be. It's that simple. We are not special people and we are not any better equipped to handle our situation that anyone else.

SO WHAT IS THE RIGHT THING TO SAY?
That is a tough one. For me, it's not what you say but how much you cherish all of the little things. I see so many people who take the little things for granted: being able to take their children to another siblings hockey game, deciding last minute to go hiking in the woods, eating dinner together as a family, being able to change plans last minute and have your kids go with the flow, not seeing one of your kids in tears at family gatherings because the other child can't handle being there anymore, sometimes spending holidays alone because one of your children refuses to go at all, not having to play outside for 45 minutes in 8 degree weather because your child doesn't feel heat/cold the same way you do, having a home that will need $10K+ in repairs before you could possibly sell it, etc., etc. etc.

For me, I want to know that you aren't taking your life for granted. I want you to know that taking your dog for a walk while your 11 and 9 year olds stay at home for 15 minutes is a privilege. Having the flexibility to go where you want to go, when you want go- even if it is running errands and going to 2 soccer games and a dance practice, is a privilege. Having a child that can function in a neuro-typical classroom and play regular sports/activities is a privilege. Watching your children learn and helping them with homework is a privilege. The ability to reason with and discipline your children is a privilege.

Maybe a good response is something like, "You are doing a great job with your child. Kids sure have a way of making us cherish what really matters in life."

ENOUGH OF THE SOAP BOX, what have we been up to?

We are thrilled to see spring peeking around the corner. The sun has been out for the past several days and it feels great. I think we all have a little more pep to our steps these days. Pat and I just got back from vacation in warm, delightfully sunny Ixtapa, Mexico. We are so very fortunate to have wonderful family who help out with the boys while we take time for ourselves. This year, my parents and older brother, Sean, also were in Ixtapa. We overlapped by three days and got to spend some time together. The guys went deep sea fishing and had a great time catching lots of fish. We had some really fantastic meals together and loved watching the sunsets from their window-filled condo. Pat and I thoroughly enjoyed our time together and appreciate everyone who helped with the boys so we could indulge in some major relaxation!

Cole had a great time turning 10!!! He loves to tell you how old he was in each year. He'll say, "Mom, how old I was in 2005? I was 4!!!". Language might not be perfect, but he's trying hard and selfishly I see that as him figuring out simple math. :-) We celebrated with a bowling party at Ham Lake Lanes. Cole loved bowling with his cousins and family. He also had a great time singing karaoke. He walked around with the mic and everyone got a chuckle when (as he was ready to go), he announced to everyone in the bowling ally, "This is Cole. The party is over. Bowling is closed. It's time to go." Did I mention we love his sense of humor???Although in his eyes, he wasn't trying to be funny. He was a man on a mission, after all, it was time to go home.

The highlight of Cole's winter was him getting to ride on the zamboni during the U of M Women's hockey game!! For those who don't know, Cole is obsessed with zambonies. A friend from high school arranged for him to ride the zamboni between periods. He was thrilled. He waved to his family in the crowd and got excited when they announced his name on the loud speaker. He even wore his U o M jersey! Check out the video below.

Connor had an exciting winter! He is turning into a fine gymnast. We were excited to travel to Iowa City in February for his first out-of-state meet. It was so much fun! Two weeks ago, Connor and his team competed in the MN State Gymnastics Championship. His team took 1st place and Connor was the top overall gymnast for all kids at his level!! Connor has developed into a real leader on his team who, even after being at home with Influenza for a week, said, "Mom I really want to try to compete. I'm not trying to brag or hurt feelings, but I usually score high and my team needs me." Needless to say, his team took 2nd that day and Connor again placed 1st in his age group! Connor also had a great time in hockey this year. His skating and stick-handling really improved and he scored a fair amount of goals throughout the season. Now we're moving on to baseball season. Pat is coaching him this year and Connor is excited to have a lot of his close friends on the team.

We are so proud of Connor. He continues to be an empathetic, proud and loving brother to Cole. They have a ton of fun together and both have already been out riding their scooters and bikes! Connor loves school. He has a lot of friends and likes to talk to everyone. He's a great a speller, he's only missed 1-2 words the entire year!! He excels in reading and math and loves science, too. He's a huge snuggle-bug, just like his brother. And he's pumped that his bangs have finally grown out after he gave himself a haircut back in October!!

Thank you for taking the time to read my blog. I hope it gives you a snapshot as to what life is like when someone you love has Autism. And I hope it makes you cherish all of the little things in life and the freedoms and flexibility that come along with it.

Can 2+ months really fly by this fast?

2011-01-20T17:56:00.004-06:00

Apparently yes, two months CAN fly by this fast! I knew I was a little behind on my blog, but I was blown away to see my last post was pre-Halloween! Maybe that's a good sign... winter is nearly half over already.

But first let me back up a bit. Cole had a fantastic Halloween. He was thrilled to be Luigi from Super Mario. He wore that costume with so much pride and was even more thrilled when he saw a neighbor boy who was dressed as Mario! Cole got lots of practice wearing his costume. MAC had a Halloween party and he also wore it plenty around the house. Cole just couldn't get enough of himself, he was constantly checking himself out in the mirror. This was the first year Cole picked out his costume and wore it without hesitation. He did awesome while trick-or-treating. We pulled a trailer behind our 4-wheeler and had several of the neighborhood kids and family on it with us. Cole knew exactly what to do and loved running to the houses with his brother and friends.

November is always a time to reflect on our blessings. We got some great news from one of Cole's therapists. His Occupational Therapist informed us that starting in January, Cole would no longer need OT services! This is great news. It means Cole has mastered nearly every objective in his therapy plan. The only things left are tying his shoes and clipping his toe nails; two things that are extremely difficult for him. I think back to where he started years ago and there are so many things he's accomplished: tooth brushing, buckling, zipping, snapping, holding a pencil, typing, clipping his finger nails and so much more. We also had a very positive and encouraging meeting at MAC for Cole's 90 day plan update. He continues to blow through his objectives and challenge the therapists to pave a different road for his therapy. It's so rewarding to look over the report which shows pages and pages of mastered objectives. And I love how dedicated the MAC therapists are at researching, brainstorming and challenging themselves to come up with countless ways to challenge Cole and increase his skills. We are blessed.

December came and went in a flash. The boys loved all of the snow we got and had a blast playing outside. Cole was especially thrilled when Pat brought home a new snowmobile (new to us at least). I got part of Cole's reaction on video, but not all of it. He was over the moon and his grin went from ear to ear. Cole loves anything that goes fast and snowmobiles are no exception. Pat and the boys have had hours of fun riding the trails that are only a mile from our house. Pat's also taken them up to the ice fishing shack on Coon Lake. The highlight from that trip was when Pat got pulled over by the Sheriff. Pat didn't have all of the proper stickers on his snowmobile and got a warning ticket. Cole said to the guy, "Give him a ticket. We want a ticket!". He also asked to sit in his police car and go for a ride. Good times.

Christmas was very nice. Cole did exceptionally well at Pat's parent's house on Christmas Eve. He loved sledding outside with his cousins and showed so much patience and good manners when opening presents. Cole had fun when we hosted Christmas day at our house. He loved brunch and opening more presents. It was so exciting for him- everyone went in together and got him a refurbished iTouch! We got him a custom skin for the outside that is John Deere colors and has a picture of Cole on a tractor. He loves his iTouch. He takes it with him on the transportation van every day. Cole can listen to his favorite music (Leona Lewis, Kelly Clarkson, John Mellencamp and holiday tunes), and watch his favorite movies (Toy Story, Monsters Inc and Finding Nemo). He's done very well following the laminated directions on his backpack that remind him to put his iTouch in it's case after every car ride. Never did I imagine we could give him this responsibility! Although we have staff, drivers and us parents who make sure it's in the case before the van leaves.

Pat and I got to do something exciting. We got to travel to Dallas for a quick weekend trip. Pat's company has an office down there and we were fortunate to be invited to their holiday party. It was a lot of fun and really nice to breathe 60 degree air and soak in the sunshine. We spent some quality time with one of the other owners, ate at a true Texas BBQ and had fun shopping at a huge mall. We both loved the city and left wanting to go back again soon!

Cole had a few extra days off over the holidays. As good as he did on the actual holidays themselves, there were a few really tough days as well. Cole gets extremely thrown off when even the littlest thing changes in his routine. He acts out by being defiant, aggressive and non-compliant. It can make those extra days at home unbearable at times. The good thing is that now we know what to expect and we mentally prepare for these tough times.

January has been going well for us. Cole loved having his cousins Brady and Elle sleepover. Brady was first. Typically Brady will stay in Connor's room. On this particular night, Cole insisted Brady stay in his room. It's only fair, I suppose. It was really cute. Cole wanted Connor to sleep in his (Cole's) bed and Cole made a "sleeping bed" on the floor for him and Brady. He layered piles on blankets and placed two pillows at the top. Cole told Brady, "Cole's never slept in a sleeping bed. Lets catch some zzzz's." and when Pat told Cole he couldn't snuggle Brady, Cole turned to Brady and said, "Don't worry Brady, I won't bother you". Needless to say, when we checked on the boys ten minutes later, they were all sound asleep. The same thing happened the following night with cousin Elle. It's so nice to have Cole take part in activities that we used to only do when he was not around. :-)

Cole had the stomach flu twice in the past six weeks. The first time, it happened on the night of Pat's company holiday party. He was pretty sick that day and I ended up staying home while Pat went to the party. The second time was just yesterday. Cole threw up a few times in the morning, but then started firing on all cylinders. It was like any other day. Cole was so proud to tell Pat, ""Daddy, I threw up in the bucket all by myself!!!!" And when he asked me for muffins, I told him he couldn't and that his tummy might not like it. Cole then pointed to his belly and said, "Tummy, you want muffins???" I love how literal he can be at times.

I can't stop writing without some news about Connor. He's such a fantastic kid. He really is. Connor loves school, excels at it and has tons of friends. He still runs to me with a huge hug when I come in to visit him at lunch or volunteer in his class. He adores his teacher and loves to share what he's learning about. He's full of interesting facts, just like his dad. This winter, Connor is playing hockey and still competes in gymnastics. He had his first meet a few weeks ago. We knew Connor could hold his own, but he ended up placing in all six events and he took first place in the all-around, amongst 68 other gymnasts! We had so much fun staying in a hotel with his team and competing the next day. We are looking forward to traveling to Iowa in February for an out-of-state meet! Connor also has taken a liking to snowboarding. He's had a few lessons with Brittany's brother, Ross. Lucky for him, there are eight foot tall snow banks in our yard for him to practice on. At the last lesson, I was chatting with Ross and looked up to see my 7 year old riding on the chair lift by himself. That's our Connor.

Connor continues to be an incredible brother to Cole. I always tell him that God placed him in our family for a reason and there is no one who could be a better son and brother than he is. Connor is so proud of Cole and likes to involve him in his play dates. They love to play the Wii together, wrestle, color and play outside. It's wonderful to watch.

Cool stuff going on

2010-10-28T13:40:00.006-05:00

Cole has been slowly adjusting to the cooler weather and diminishing daylight. Not that he's fond of these changes, but he seems to be coping as best he can. Fall and Spring are the two most difficult times of the year for Cole. He struggles in the fall to let go of all the wonderful things that summer brings: endless tractor rides, short sleeve shirts, playing outside until 8pm, bike rides, scooter rides and other fun things.

It takes quite a few weeks for Cole to adjust to playing inside longer, putting on a coat and waking up when it's still dark out. The last few mornings, Cole has told me, "Mom go back to bed, it's still dark out". Now only if he said that on the weekends, when he's consistently up and firing on all cylinders at 5:45am. These transitions seem easy and for some people, even anticipated. For Cole, these changes throw him off entirely. It affects his behavior. He's on edge, irritable and doesn't understand when you tell him he can't ride his scooter in the dark. His therapists at MAC work on getting him to wear more than one pair of jeans and long sleeve shirts. Cole is so resistant to these things that he checks his backpack each morning and tells me, "no jeans or long sleeve shirts in backpack Mom." I have to hide them inside when he's not looking or sometimes hand a separate bag to his driver, so she can give it to MAC.

The other hard thing is the first few snowfalls. You know, the kind where it is snowing, but it melts when it hits the ground. That is the worst for Cole. He thinks he's going to get to plow snow with the tractor or at very least, shovel. He's ready to put on his snow suit, put the plow on the tractor and spend two hours moving the snow around. He doesn't understand that the ground is too warm.

Thankfully, over the past 18 months, Cole has learned a lot more age-appropriate play skills. This helps tremendously in the cold weather months. He loves playing the Wii, his Nintendo DS and more recently, he loves my iPhone and the music it can play. Cole has his own special play list. He jams to music of all kinds. Right now he's into Katy Perry, John Mellencamp, Pink and the Gear Daddies. He navigates my phone with ease, puts on his headphones, sings, bops his head and shakes his hands to the beat. He loves music, just like his brother does. Cole will even look up the music videos or concerts on YouTube. He can point out John Mellencamp from other members of the band and find him singing the songs he likes.

Cole continues to take private swim lessons at Foss. He is making so much progress. His instructor, Megan, is amazing with Cole. She's been working with him for almost two years and she knows him well. She understands how to motivate him, how to keep him from acting silly and more importantly, how to teach him to swim. We've tried other instructors and not one has been as great as Megan. Cole was thrilled last week when it was Safety Week at Foss. He got to put on a Foss sweatsuit and practice both swimming in the clothes and jumping off the sides. They walked around the read all of the safety signs. They talked about who Cole can swim with, where he can swim and what to do in an emergency. He loved it!

Cole is SO excited to start hockey. We have him signed up for his second season on the Polar team in the MN Special Hockey league. He is waiting patiently for the middle of November, when he'll skate every Sunday. I took the boys to open skate last Saturday. We met Uncle Sean at the arena. They both loved skating with Uncle Sean. Cole's legs were a little wobbly at first, but he got back into it. I even saw him talking to an older gentleman and giving him a high five. Sean and I both saw it and couldn't help but smile. Cole still loves to skate fast and then fall down. The goal this year is to teach him more about where to shoot the puck and not to fall until after he scores a goal. We'll see how that goes! As much as Cole loves to skate, his favorite part is the zambonie. At open skate, he was asking the rink attendant if the zambonie was going to come out. It made his day when the black and gold machine revved up and made its way onto the ice. Cole waved in excitement and told me the "zambonie was mowing the ice." I guess that's one way to look at it!

I have been looking for some homeschool activities that Cole can participate in while he's in therapy at MAC. We all feel it would be a really great opportunity for Cole. Not only will he get to do some fun activities throughout each week, he'll get the chance to socialize with and model after neuro-typical children. So far, we have him signed up for homeschool gym class at the YMCA, ice skate lessons, a monthly rock climbing group and I'm hoping to add either bowling or gymnastics! We are also waiting to see if there is a spot on the roster of a Special Olympics Floor Hockey team. I should find that out this week. I'm so proud that Cole has progressed to a point where these things are possible. What a gift!

Speaking of progress, we just had Cole's annual assessment with MAC. Each year Cole is tested to see where he falls on the Autism Spectrum. It's a big undertaking. I fill out several questionnaires, Cole is observed and tested, I am interviewed, along with several of his therapists. We had a meeting this week to find out the results. Things went so well. Cole showed so much improvement over last year. He is continually moving toward the mildest area on the Autism scale. He still tests and functions in quite low percentages when compared to kids his age, but I don't give a crap. He's making TONS and TONS of progress and his Autism symptoms are slowly decreasing in intensity and severeness... what more can we ask for? He is talking more fluently, teaching himself to read, understanding simple math and having less aggressive behaviors. More importantly, he is happier and enjoying life. His frustration level is decreasing and he has the skills to play with kids his own age.

MAC has been incredible and a critical part of his progress. His team of therapists are truly vested in Cole. His lead therapist came back from maternity leave last week. She told me at the meeting that while on leave, there was a chance she was not going to be re-assigned to Cole upon her return. She was so bummed out, that she immediately called her husband and then her mom to talk about it. She was devastated. Then a week later, she got her case load and Cole's name was on it. She called the office right away to confirm it and when they told her she would indeed still be working with Cole, she was elated. These are the type of people who work so hard on Cole's behalf. They are highly-educated, driven, passionate, caring and wonderful people. And we are so blessed to have them on our team.

I hope you all enjoy a fun Halloween with your families. This is the first year Cole has showed true excitement for Halloween. For the first time ever, he told me what he wanted to be and helped me find the costume. It came in the mail last week and he was so excited. Cole tried it on right away and stood in front of the mirror, looking at himself, dancing in it and asking if he could wear it every day. It seems so simple, but this is significant for Cole. We know how much work and progress it's taken to get Cole to this point and Pat and I could not help but revel in it.

a few firsts

2010-09-17T13:03:00.009-05:00

It's hard to believe it's September. Although it was hard to miss it when, at 5:13am on September 1st, Cole ran into our room and excitedly said, "Mom, it's September!!!". I think he was most excited because to him, September means short-wearing season is done. No more mom sneaking shorts into his backpack for him to wear at therapy throughout the day. Yes, it is that hard to get him into shorts. In fact, I don't think Cole wore shorts one time this summer!!

Now Cole is into one certain pair of jeans. He wants to wear the same pair every single day. I'm not sure why this is? So now I'm sending different style jeans in his backpack for him to wear at therapy. He is so smart, he even tries to look in his backpack before he hops on the van, to make sure there are no shorts or jeans in there. I have a separate bag with the jeans and luckily, the driver makes sure the "extra bag" makes it to MAC. Therapists want us to have Cole wear the jeans if he expresses interest in doing something. In other words, if he wants to play the Wii, he will need to put on different jeans first. We'll start this once he gets back from the respite house.. wish us luck!

We've had a few exciting firsts with Cole over the past few weeks. It's so rewarding for us to witness his progress!!!

The boys were invited to a birthday party last weekend for two twin boys who live across the street. The party was at Pump It Up, one of Cole's favorite places. Pat and I stayed at the party, in case things didn't go well for Cole. I'm glad we were there to see how awesome Cole did! Cole had so much fun. He played for the entire hour in the inflatable area. They turned off the lights, played music and gave the kids glow sticks. Cole thought it was cool. He even liked the "fighting" area, where kids had big inflatable "weapons" to hit and knock one another over. Cole played that with a few boys and laughed the entire time! Pat and I saw Cole (for the first time ever), go up to a child he didn't know. We couldn't hear what Cole said, but after a little bit of conversation, he turned to us and said, "This is my friend, Jack". Cole got a little too close for Jack's comfort level and he walked away from Cole shortly after their conversation. It didn't bother us, or Cole for that matter. We were so proud of Cole for trying to make a new friend. The time came for pizza, cake and presents. Cole found a place to sit amongst the group of kids. He was completely indistinguishable. If it weren't for one of the twins who said, "Cole has Autism", I don't think any of them would have known. Cole ate his pizza, politely asked for another slice and sang Happy Birthday just like the rest of them. He sat patiently for cake and brought his gift up to the boys without being told. He even let Connor run around and didn't need to be by his side the whole time. It was a huge success!!

Later that day, Pat set up the tent in the back yard. We set up a nice fire and torches. The boys brought out their sleeping bags, pillows and lots of blankets. The three of them slept out in the tent and made it until 3:30am, when Connor woke up cold. Cole loved sleeping out in the tent. They snuggled close together and Cole kept telling Pat, "I love you Dad. I love sleeping in the tent.". Cole has been so verbal with his feelings. He is constantly telling us how much he loves us and he's always giving lots of hugs and kisses. We are so thankful to get that from him.

Another first was Hippotherapy. Hippotherapy is Occupational Therapy that takes place on a specially trained horse. It is very expensive ($160/hr) and very hard to get into. I saw a neat program on the news and in July I put Cole on the wait list. It was supposed to be a year long wait, but we lucked out and Cole got a call two weeks ago. It was a mad rush to get all of the logistics worked out, but we succeeded. Cole's waiver program is paying for the majority of it and thankfully, the one time slot that was open happen to fit our schedule perfectly.

He went to his first session on Tuesday. It was incredible. Cole walked in, put on his horse helmet and hopped on Dreamer the horse like he had been doing it for years. Cole was so happy, calm, talkative and cooperative. There are four staffers working with Cole and Dreamer. They walk around for about 5-8 minutes and then stop and do OT-related therapies while on the horse. They taught Cole commands for Dreamer and Cole was soon able to say, "Walk on Dreamer". He would wave to other people watching and ask to go faster. It was so amazing to watch and it makes me excited to see where he'll go from here. This session goes another five weeks. At that time, we'll need to get approval to fund another session. Each session is over $1000, so I'm hoping we can find a way to make it work. (see video below)

Cole also had a ton of fun at Uncle Tim's Labor Day BBQ. Pat, Connor and Cole rode their bikes to Tim's house- something Cole loves to do. It's about a twenty minute ride and the boys love it. Before they could leave, Cole made sure to put three of our Rock Band and Guitar Hero guitars in the truck. He said he wanted to have a "dance party". Fortunately, Tim had everything we needed for this dance party! The BBQ is the perfect excuse to test out the Vikings tailgating set-up. For those of you who haven't seen it, Troy and Tim's set up attracts many people and puts the need for a downtown bar down to shame. Cole did so well. He lasted five hours and behaved really well. It was the first time I can recall where Pat and I didn't have to take constant shifts watching Cole's every move. Cole played with all of his cousins. They played baseball, ran in the woods, rode toy 4-wheelers and rolled down the hill. Tim let Cole drive his lawn tractor and after dinner, he turned on the music. Cole ran and got the guitars and went to town. Cole and the cousins jammed to music. Some of them sang into the mic, a few played guitars and some chose to dance around. I think Cole's favorite was singing Hey Soul Sister and playing guitar to 21 Guns. It was a fun party and we were thrilled to see Cole have so much fun with Connor and his cousins.

Personally I had a rewarding experience with my blog this week. I heard from a mom of an autistic child who reads it. She reached out to me after having a really tough day with her son. We emailed back and forth and traded experiences and insight. She was very complimentary to me and shared how helpful she finds my blog and how much she appreciates my advice. It was nice to help her and feel like someone else benefitted from my past experience. As I told her, we're all in this together.

Summer Fun!

2010-08-03T14:29:00.009-05:00

The Cooney Cabin vacation that Cole has been looking forward to for months finally arrived. Early in July, we traveled up to Cabin O Pines in Orr. It was our first visit to COP, and we chose it since my brother, Brendan's, fiance's parents own it (whew, did you follow that?). Oh, and don't worry, I'll get to the fiance part later.

We did our best to prepare Cole for what the new resort would be like, to let him know what days he would be there and who he would ride home with. We had a picture schedule and a social story for him. All in all, it went quite well. He loved COP. There was so much to do. He rode 4-wheelers, went on boat rides, scooter rides and bike rides. He played at the beach, swam out to the raft and even jumped off. At night, he played his Nintendo DS and the Wii. We also took Cole to the nearby Bear Sanctuary. Cole liked it, although his favorite part was riding the school bus from the parking lot to the sanctuary. It was fascinating, as we got to see many wild bears in their natural habitat. At times, the bears were ten feet from the elevated deck we were standing on. Cole also loved going on the boat at night to watch the fireworks. It was so much fun!! We ventured out to the bay with many other boats and watched a fantastic fireworks show. Cole thought it was the coolest thing ever.

There were only a few times when Cole struggled. One day, it was sprinkling on and off. That did not sit well with Cole. He gets REALLY mad when Mother Nature interferes with his to-do list. Cole was a man on a mission and the rain did not fit into his plans. He got quite mad and acted out aggressively & vocally, off and on throughout the day. Luckily the rain didn't last too long and Cole's spirits lifted. The other time he got upset was on Monday night. Cole knew he was leaving on Wednesday and for some reason on Monday he thought it was Tuesday. He got very sad and kept saying, "Cole doesn't want to leave. I'm staying at the cabin. I'm not going home with Daddy." After a while, Cole finally said, "I don't want to leave tomorrow." Only then did I realize he had his days mixed up. I instantly told him that tomorrow was only Tuesday and his attitude turned on a dime. He lit up, as happy as could be, and said, 'I'm not leaving tomorrow. I get to stay!!".

Tuesday turned out the be an awesome day at COP. My brother, Brendan, proposed to his girlfriend, Brittany. It was so fun to be a part of the celebration and share the experience with both of our families. Brendan proposed out on the boat in the evening. The guys were out fishing, so us ladies were the first to hear the news- with the exception of Brittany's parents, who Brendan talked to ahead of time. It was fun explaining to Cole that Brittany was now officially his Aunt and that she and Brendan would be getting married. After the men came in from fishing, Brittany's parents and a few close family friends from the resort joined us in our cabin for some celebratory champagne. We could not be happier for the two of them and we are really excited to see Brendan joining such an amazing family. We look forward to the wedding on August 27th of next year.

Wednesday afternoon came and Cole helped Pat pack up the boat. After another fun day in the sun and on the trails, Cole was ready to leave and didn't resist when it came time to pack up and leave. He cooperated really well, said his goodbyes and had a fun time playing songs from his iTunes playlist the entire ride home. Sean and Pat are saints for listening to about eight songs over and over and over and over.

The weeks following the cabin trip proved to be quite a struggle for Pat and I. Cole's schedule was really thrown off, some of our PCAs were on vacation and Cole had several new therapists at MAC. All together, it was a recipe for some challenging behavior. Cole pushed every boundary he could, had some moments of tough physical and vocal aggression and resisted the discipline we have in place for him. Just when we start to question why we bothered going on vacation and putting ourselves through the aftermath, Cole started to improve. He got back into routine and realized that just because he was stretching his boundaries didn't mean he would get away with it.

One of these tough times came at the Aquatennial Fireworks. Cole has gone to the fireworks with Grandma and Grandpa Cooney for the past few years. He loves the show and behaves really well. This year, the fireworks show was on the day he got home from the respite house. Pat took the opportunity to go fishing. I decided I would join everyone else at the fireworks. Cole was very excited. We took two cars and he happily rode with Grandpa. We walked to the area where he's watched the show in years past. It was about ten minutes before the show was to start and Cole asked when he would see dad. I told him, "Dad is fishing, you'll see him later tonight." From that point on, Cole wanted to leave. He asked countless times and we all did our best to distract him and tell him it would only be a few more minutes until the fireworks. It wasn't good enough for Cole and his patience ran out. Suddenly, in front of hundreds of people, he started screaming, kicking me, punching me, scratching me, biting himself, etc. It was terrible. I take that back, it was beyond terrible. I had no choice but to leave; for Cole's safety and my own. So I told Connor we had to leave and off we went. My Dad followed us to the car; with Cole still upset and causing a scene. I felt really bad for Connor, even though he left without one ounce of pouting or complaining. It broke my heart to take him from the fireworks. Thankfully, my Dad stayed about 10 feet behind with Connor and I was able to get Cole in the car and leave without him wanting Connor. Connor got the watch the rest of the show and spend the night at Brendan and Brittany's house. We got in the car and Cole was instantly a brand new kid; happy as can be, singing Black Eyed Peas and playing his DS. Me, well... I can't say I felt the same. It was one of those times when I wanted to scream, "AUTISM SUCKS".

Thankfully we've had a really good few weeks with Cole. He's been into taking long bike rides to see his aunt and uncles. He's gone to the beach and on many fun boat rides. This weekend we are taking him to Bunker Beach and next week we head to the water park hotel in Otsego. I'm sure many of you saw the video of Cole singing with Tim Mahoney at the MAC fundraiser picnic. Again, he surprised us all and went right up the microphone and started singing with the band. He bopped along and sang background vocals. It was priceless and one of those times that make the difficult days disappear from memory. We are blessed that Cole gives us many of those moments. It makes it much easier to stay focused on the positive, where our energy belongs.

Enjoy the rest of your summer everyone!

A great start to the summer!

2010-06-28T15:13:00.006-05:00

You can tell it's summer by the fact that it's been nearly 2 months since I've posted last! It's been a pleasant spring and summer. I hope you've all been able to enjoy it to it's fullest.

Cole's summer is off to a great start. The highlight so far was the trip we took to the Noble Family Farm in Austin, MN. We were so thankful to be invited to the farm from our close friend, Jason and his family. Running a farm would be Cole's dream job and to say he saw a slice of heaven in Austin is an understatement.

The ride down was a little hairy. It was only a 2 hour drive, but Cole's excitement got the best of him. Well that, and the rain. He struggled in the truck and screamed for it to stop raining. He would ask, "where is the farm?" We would reply, "we'll be there in 40 minutes." Cole would reply, "No, 4 minutes." I wish it were that easy. We made it and Cole was SO excited once we got there. The rain let up a little and he was amazed at the farm. We played for a while, riding the tractors, mowing the lawn, buzzing around on the go kart and checking things out. Then it started to rain. Luckily we were planning on staying at a hotel with a pool. We loaded up the kids and headed to town. Cole was equally as excited about the hotel. It was his first time and he thought it was the coolest thing. He kept saying, "We'll sleep HERE tonight." "Connor, I'm going to sleep with Dad, you sleep with Mom." He took it all in and loved snuggling on the "new" bed. Soon Jason and his kids arrived. Everyone swam for a few hours. Cole did awesome. It was loud in the pool area and there were a lot of energetic kids. Cole played it cool and blended right in. After a while we looked up and the sun was shining. So off to the farm we went.

It only got better from there. Cole mowed every blade of grass at the farm. He was in heaven and the constant smile on his face gave me goosebumps. He interacted with the kids and took turns on all of the fun things to do. He got to ride a dirt bike with Pat. It was so fun to see. Cole desperately wanted to drive it by himself, like Breyden, but he settled for Pat's help. Cole even got to ride in an old-fashioned tractor. It worked perfectly and the guys needed to use its scoop for some heavy lifting around the farm. Jason let Cole and the kids come up by him and ride it around the farm. Cole got to ride it a few times and it was just awesome!!

Finally at 10:30 we decided it was time to go back to the hotel. We got ready for bed and all was quiet in the room. All of the sudden, I hear Cole whisper to Pat these exact words, "Dad, thank you for taking me to the farm." It was music to our ears.

We enjoyed breakfast at Perkins the next morning and loaded up our stuff. We headed back to the farm for a few more hours of fun and then Cole was ready to go home. It was a HUGE success. Words can't express how thankful we are to the Noble Family for giving us this wonderful experience. Cole talks about Jason's kids and asks to go back to the farm every single day.

OUR GETAWAY

Last year we started an annual tradition of taking Connor on a fishing trip up north. While Cole was at the respite house this year, Pat and I took Connor to Ely and Biwabik. We had a fantastic time. Connor caught his first walleye! He thoroughly enjoyed his one-on-one time with us. We played games, fished, swam, ate, explored, snuggled, hiked and did so many fun things. We even got to tour the Soudon Ore Mine. It was fascinating. After a 3 minute steel elevator ride down 1/2 mile+ into the ground, we learned so much of what it was like to be a miner and how they went about mining the ore. Connor loved the experience and took it all in. He loves learning about things like that and takes in all the details, just like Pat does. They are so similar in that way. Pat is full of tid bits of information about a wide array of things and I can tell Connor is going to be the same way. It was hard to see the time come to an end, but we have next year to look forward to. It's so important for Pat and I to give Connor time all his own. He makes so many concessions and there are numerous things we can't take part in as a family. We try hard to give him unique experiences and our un-divided attention. He deserves it.

MIRACLE LEAGUE and PLAY NET

Cole took part in Miracle League baseball this year. It was another successful season. He enjoyed playing on Thursday nights and met a lot of new friends. This year was the first time he didn't hit off the tee. We were so proud of him. He was especially excited to have Connor's help in the field on the last night. He is so proud of his brother and loves him so much. I love seeing these kids play baseball, no matter what impairments they might have. The league brings priceless joy to these kids and we wouldn't miss it.

Cole is also taking part in a play in the park summer "camp". He goes every Monday and Wednesday for 2-1/2 hours. Staff from MAC meet him there and work with him on his social skills and other objectives of his programming. Cole has done wonderfully. He walks up to the staff and says, "Hi, my name is Cole" when it's time to check in. I don't stay and watch, but MAC staff have said he needs minimal assistance to learn the games and blends in very well with the

neuro-typical kids. Pretty soon we are going to let him bring Connor as his guest. That should be fun!

TUBING, TUBING, TUBING!!!

Cole absolutely loves our new boat. Pat has taken him out countless times. Cole has learned how to turn on both motors, hook things up and steer the trolling motor. He even helps Pat back the boat in by copying me as I tell Pat how many feet he has left in the garage. We've also been able to take the boys tubing a few times. The first time we went with Brendan and Brittany. We had a blast. Just yesterday we took Cole's cousins, Brady and Cooper, on the boat. Cole was really excited! The three boys tubed for a long time, laughing and bouncing about. After that, we took them to the sandy lake shore and played in the water for a while. Cole loves to go fast and smiles constantly. The faster, the better for this first mate.

HARLEY RIDE

This past week, Cole took his first ride of the summer on Grandpa Denny's Harley. Right after he got his helmet, he ran to Grandpa and said, "Grandpa I'm scared." I think he was more excited than anything. Grandpa took him around the block and back to the house. That wasn't enough for Cole, he wanted a longer ride. So off they went, two peas in a pod. Cole loved the motorcycle and wanted to go faster than Grandpa would allow. It's fun to see Cole experiencing such fun things. He lives life to the fullest, that's for sure.

THURSDAY, JULY 1st

This day will be bittersweet for our family. It marks the six year anniversary of Cole's Autism diagnosis. When I think about it, the only sad thing about it is looking back to that particular day and how profoundly sad, scared and alone we felt. Our family has come a long way since then and we have so much to be proud of.

That night will be special for Cole. It will be his first experience at the new Target Field. A former co-worker of mine generously donated four tickets to our family. Cole is super-excited! He woke up this morning and said, "Mom, Thursday is July. I'll go to the city." He also says he's going to have a "fancy dinner in the city". I'm not sure how pizza and ice cream at the ball park qualify, but we'll take it. We are looking forward to this momentous occasion and hope it turns out to be a rewarding reflection on just how far Cole has come.

May is for Mother's Day!

2010-05-01T15:43:00.008-05:00

Wow, it's May already. Although the weather we've been having makes it feel like it's May, in reality, it just doesn't seem possible. Connor told me this week he only has five weeks left of school. There is no way my baby can be almost done with 1st grade. I saw an old friend this week and he asked if Pat still had his job selling highway advertising signs. I can barely remember when he worked there. It was nearly ten years ago when I was pregnant with Cole... that makes me realize just how fast time is passing by. In a few short months, it will be six years since Cole's Autism diagnosis. So much in our lives has happened, so much has changed, goals are becoming reality, visions of the future are suddenly the present.

I always wanted to be a mom. I knew I would love it. And it is by far the most rewarding, enjoyable and important job I've ever had. Connor made my day this week when he told my Mom that I do such a good job because I've had "lots of mommy training classes". It will be fun when Connor realizes years from now that children don't come with any kind of handbook. His comment got me thinking about how and why I parent the way I do. It was easy. I've had an incredible "mommy trainer". My mom did an outstanding job raising her children. She worked outside the home, always had dinner for us (even if she wasn't going to be home), our home was clean, she seldom missed any of our sporting events and even though she was crazy busy, it felt to me like she was a stay at home mom. She was full of good advice and loved each of us four kids unconditionally. Even now, I can count on her no matter what. Most of the time, she offers her help before the words come out of my mouth. She understands and praises the hard work I'm doing as a mom and tells me I'm doing a good job. I feel like she loves my children as they were her own and she's always listens to the countless "proud mommy stories" I share with her. I'm so fortunate to have such a wonderful mother and "mommy trainer".

Cheers and Happy Mother's Day to all of the wonderful moms out there, who wake up each day and give all they have to make the lives of their children as pleasant and love-filled as they possibly can.

Now for an update on one of my scariest mommy moments. As many of you know, Connor broke his arm in two places on Easter morning. He had surgery on it almost two weeks ago. The doctor made an incision and placed two pins to hold the bone in place. Connor got his permanent cast on Monday and the xray showed everything is healing well. We go back a week from Monday to possibly get the cast off and pins removed. Connor has been wonderful throughout the ordeal and hasn't complained one bit. He's very excited to get back to gymnastics and join his baseball team. As you can imagine, Connor has managed to have a lot of fun regardless. There isn't much that slows him down.

We had friends in town last weekend from Sioux Falls, SD. Our friends came to visit with their two children. We prepared Cole as well as we could, but we just didn't know what to expect. The last time they were here (about 3-4 years ago), Cole got so worked up we had to call my parents and bring him there for the remainder of the weekend. This time, we did have a back up plan in case things didn't go well, but we didn't need it! Cole loved having our friends here. He talked with all of them and played with the kids throughout the weekend. The kids even put on a mini-Prom in the basement. Cole loved watching Pat and I dance in the basement and had a blast playing Rock Band with everyone afterward. Everything went so smooth and Cole was happy the entire time. You'll see the pictures I posted and how happy Cole was. The best part came when Jim said goodbye to Cole. Cole looked at him and said (without prompting), "You can come back any time". We were so proud of him. Cole has been talking about the Rysavy's every day. He wanted them to come back this weekend. It's a good thing they are coming in July so he has that to look forward to!

Cole has been doing a lot of testing with our school district. He is being evaluated by a team of specialists to determine where the best fit is for him. The past three testing sessions have gone so well. All evaluators said he worked very hard and stayed on task. In talking with them, it seems Cole cooperated very well and they were able to get the information they needed. The only glitch we had was last Thursday. I was about to take Cole up to McKinley for testing, when Cole heard the garbage truck. He LOVES the garbage truck and seldom gets to see it. I tried to get Cole to leave, but I just couldn't make him get in the truck. He was so excited to see the garbage man and I wasn't going to burst his bubble. I called the school to let them know we would be late and we waited for a half hour until the garbage man made it through the entire neighborhood and finally arrived at our house. Cole jumped up and down and waved in excitement. It was well worth it.

He is making progress every day. His speech is blossoming and his behavior is very manageable. Pat was in Toronto last week for work and I can honestly say it did not give me one ounce of stress. It has taken A LOT of time and hard work to get to this point, but we are here and it feels wonderful. What a wonderful mommy moment. Then again, I have many wonderful mommy moments. And I look forward to countless more.

HAPPY MOTHER'S DAY!!!!!!!

Lots going on!!!!

2010-04-14T19:41:00.003-05:00

It's been a crazy few weeks for the Schusted household! I'll start back almost a month ago...

Pat and I enjoyed a wonderful time in Ixtapa. It was our sixth time there and we were fortunate to have my parents and six neighbor friends there with us for three of the seven days. Once again, Pat got to deep sea fish with my Dad and Santos. They had a successful day on the water and both caught a lot of fish. We had a fun time at the Emporio Pool with our neighbor friends. We are all so busy with our families, that it was nice to get quality time together. We spent the last four days of our vacation lounging around by the pool, taking in loads of sunshine and relaxing. The weather was perfect the entire week and we had countless delicious meals, as usual.

The boys did quite well while we were gone. Cole came to pick us up at the airport with Grandpa Denny. He was so excited. Once he saw us and we left the airport, all of his emotions from the past week came rushing out. He cried, got angry and wanted "The Penguin Game". Cole was really out of sorts and it was pretty hard on us. We stopped at Target to look for the game; not having any idea what it was, a board game, a Nintendo game, a book, a movie?!? Even with the help of a Target employee, we could not locate the game. Cole was really mad. Pat had to carry him out of the store kicking and screaming. Luckily, once we picked up Connor and stopped to get ice cream, Cole settled down and life returned to normal. We've come to expect this from Cole. He does an amazing job while we're gone, but when we get home, he wants us to know it was not easy for him.

Pat was able to search around the internet and find The Penguin Game. We ordered it from Amazon and had it delivered the next day, to Cole's surprise. He was thrilled and thankfully, the episode on the way home from the airport was all the rough behavior he had after we got home.

We came home to incredible spring weather. As you all know, Mother Nature has blessed us this spring. Cole has been able to spend a lot of time outside, doing the things he loves most: riding the tractor, using the tiller, raking, riding his bike, etc. We've had so much fun with him and his mood has been really upbeat.

The thing Cole has been most excited about is our new boat. We traded in the 16' Alumacraft in March and got a 20' Crestliner. Cole has been sitting in it while it has been parked in our garage. He's claimed his spot in the passenger side comfy captains chair. He loves to open and close the windshield and look in all the compartments. When he saw the motor, he told Pat, "Daddy the motor is HUGE!". As soon as the ice went out on Coon Lake we were there. Cole was beyond excited. He was moving his hands and the smile on his face went from ear to ear. I let him sit in the big chair and he loved it. We went really fast and he couldn't get enough of it. Needless to say, we've been out on the boat at least four times since, in fact, he and Pat are taking Tim, Max and Zack on a ride as I write this! We are so glad to have this boat. We spent a lot of time boating and letting the boys swim at the lake. Our old boat didn't have enough room for us to move around and now we have plenty of space and a big motor to push us around the lake. Soon it will be time for tube rides!

Shortly after we got back from vacation, Cole went to his cousin Max's birthday party. It was at Pump It Up with about 15 other kids. We were not sure how Cole would react to this, but we tried it anyway. It went so well. We got there after Cole's swim lesson, so we missed some of the play time. At first, Cole was unhappy about this, but we asked the staff to open the play area and Cole was able to spend some time jumping around. Soon he joined the big group for cake and the birthday song. It was so fun to see him get excited and mingling with the kids. He sat amongst them like any other child and sang the birthday song. A few years ago we would not have attempted this, so to see it be successful was a proud moment for us.

On Easter morning, the bunny threw us a curve ball. Connor fell off a plastic table as he was getting off our trampoline. He broke two bones in his arm. It took me a few minutes to realize what happened and when it did, chaos broke loose. Pat had to run to get Cole and I immediately packed up Connor and brought him to the ER. My Dad met me there and stayed until Pat arrived. Poor Connor did a number on his arm. He broke both the radius and ulna and he broke them bad. He was put under at the ER so the doctor could reset his bones. He was SO brave. We went to the specialist on Monday and his initial thought was that even though the bone was attached "by a thread", it would heal together and be strong enough for a full recovery. He left Connor in a splint/temporary cast for a week and had us come back in this Monday. Connor and I went in and they put a permanent cast on. After that, they did another xray and determined the bones were not lining up properly.

Unfortunately Connor would need surgery the following day. So yesterday we took him to Mercy Hospital for surgery. Dr Pittman put made an incision and put two pins into Connor's bone to hold them in place. Connor did really well. He was scared and crying when he woke up from the surgery, but slowly the medications wore off and he was more like his old self. He has been taking pain medication and slowly things are getting better. We go back to see Dr Pittman on Monday and hope things still look good. If all looks good on Monday, the plan is to put the permanent cast on the following week. It has been an eventful 10 days for our family. Luckily Cole was at the respite house from Sat - Wed, so we were able to care for Connor without any interruptions. It's funny how things work out sometimes.

There is so much more I could write about and I wish I wasn't so far behind on my blog. Sometimes life just gets in the way. I did get an email this week from a woman I've never met. She has been following my blog and asked for insight on a few things regarding her Autistic son. It was so nice to hear from her and more importantly to share our experience and hopefully have a positive impact on their journey.

HAPPY SPRING EVERYONE!

My little daredevil

2010-03-15T21:39:00.004-05:00

Cole had quite an exciting Wednesday last week. The morning started off with a visit to the dentist. Part of me can't believe I'm actually typing this, but Cole had been looking forward to this appointment for months.

For those who don't know, the dentist and dental hygiene have been one of our most challenging things with Cole. It is hard to put the intensity of his dental fear into words. We have tried medications, picture schedules, Velcroe body jackets, books, etc. to get Cole comfortable with the dentist. It got so bad that we couldn't drive down the road that lead to our former dentist and the last time we got Cole into the building, he was so full of anxiety that he smashed his head into the inner brick walls of the building. We lost all hope until we got the recommendation of Dr King.

Dr King is a wonder-worker. Actually, the bulk of the credit should go to his amazing hygienist, Marlene. Wednesday was our third visit with Dr King. The first time, Cole went to the office and just looked around. He took a ride in the chair and that was it. At that time, the decision was made to put Cole under general anesthetic to clean his teeth and do any necessary work. The second time we visited Dr King's office, Cole got to perform a teeth cleaning on a teddy bear. He loved it and even sat in the chair himself. He let Marlene count his teeth and "polish" his two front teeth with her special tool. Dr King also got a quick exam in.

This time around, Cole was super excited. He could not wait to work on the bear and turn up the music in Marlene's special room. When it was Cole's turn, he sat right down and Marlene went to work. He let her clean, polish and floss all of his teeth. We had to take a few breaks, but he made it. When Dr King came in, he let him examine his teeth. The only time Cole had anxiety was when it was time to paint his teeth with fluoride. He didn't like it at all and we had to restrain him slightly. It stressed him out, but in the end he survived and had white shiny teeth to prove it! When I think back to our troubles related to this, I'm amazed at the tolerance and progress Cole has shown. The true test will be in September when he knows what he's in for. He's already told me, "only bear in September, not Cole". Something tells me he will do just fine.

That night, we rewarded Cole by taking him to Nick Universe at the Mall of America. Cole was beyond excited and so happy to have his family there with him. He, Pat and Connor went on almost every ride. It was so much fun to see Cole leading us around the park. He knew where everything was; from the Gatorade machine to the ferris wheel entrance and the mini golf course to Dairy Queen. It was like we had our own tour guide. The boys had a great time and I was amazed at how much they loved the "crazy" rides!! We would take Cole there a lot if it weren't so darn expensive- although it's worth it to see the grin on his face.

Tonight we told Cole about our upcoming vacation. Pat and I will be leaving Thursday for Ixtapa. It will be our 6th year in a row. We are incredibly blessed to have wonderful family members who help with the boys while we are gone. They understand how important this break is for us and just how much we need a reprieve from our often hectic home life. Cole was quite sad when he glanced at his picture schedule. He crumpled it up and said, "Mommy and Daddy aren't going on vacation. They are not going on a plane." Tears came to his eyes and he was truly sad. Slowly, as the night wore on and after slamming a few doors, Cole came to grips with the situation and appears to be ok. As much as he adores his grandparents, this coming week will be hard for him. He'll miss us as much as we miss him. Keep him in your prayers.

SURPRISE!!!!

2010-03-02T13:22:00.004-06:00

We have had so much fun with Cole over the past few weeks. He's been in a great mood and now that we've gotten over the hump with the increased difficulty of his stand up, sit downs, things have been going well with him. He is talking in more complete sentences and keeps surprising us with his progress. He shows us so much love and affection. We know he adores us and his brother, Connor. The two boys are the perfect match for one another. Cole has such strong admiration for Connor. He looks up to him and wants to be a lot like him. Connor is truly amazing with Cole. I wish there is a way I could give him the credit he deserves. Connor is mature far beyond his years and the intuition, empathy and compassion he shows for Cole inspire me. It's so wonderful to see Connor enjoy Cole's increased play skills. There are so many more age-appropriate activities they play together. They are great pals and have so much fun playing the Wii, sledding, playing games, wrestling, skating and doing homework together. The other day Connor said to me as the boys were playing at the table, "Mom, I just love Cole's smile. See, there it is again." I mean seriously, how many brothers say that about one another. And this happens nearly every day with Connor. He has the most positive, supportive attitude when it comes to Cole and his Autism. It's amazing... he's amazing.

Cole turned nine on February 28th. I can't believe I have a nine-year-old. It seems like just yesterday when we were putting together his nursery and here he is wearing size 10 jeans and weighing over 70 pounds. Our journey with Cole hasn't been exactly what we signed up for. Someone said to me this past week, "it's like planning a trip to Italy but when you land, you are in Russia." It's still a wonderful trip, but it's not what you planned. In our case, we did spend close to 3 years in Italy and then one day, our tour guide said, "You thought you were in Rome? You guys have been in Moscow for three years. Does that explain why some things haven't made sense?"

We hosted a surprise party for Cole on Saturday. He had absolutely no idea. It was the day before his actual birthday, so he wasn't expecting a party that day, nor had he asked about one. We had all of our immediate family over and waited anxiously for his PCA, Alli, to drop him off. We crowded into the living room, hidden from sight. Everyone, even seven little kids, kept very quiet as Cole came home. He walked up the stairs and everyone yelled, "SURPRISE!!!!". Cole's reaction was priceless. He covered his ears and looked very shy and excited at the same time. He kept saying, "Wow... wow. It's a surprise party for me!" He took time to process what was going on. Cole would walk into his room and talk to himself about what was happening and then he would come out and show his excitement to the crowd. This process took about five minutes. He had so much fun and was so proud to turn nine.

We also had a lot of fun at hockey this week. Cole had practice on Sunday. He was so happy to have Connor skating with him. Connor did an outstanding job leading Cole through practice and the drills. It brought us so much joy to see them skating together. Cole is so athletically gifted and to see him skate so well after 6-7 times on the ice is impressive. Sadly the hockey season comes to an end next week. I'm in the process of signing him up for Special Olympics. I just need to decide which of the spring sports suits him best. In a few months, he'll also start Miracle League baseball and just this past weekend, the boys started an adaptive bowling league together as well. You can check out a neat video of Cole and Connor skating together at: http://www.youtube.com/watch?v=R-B2_Nfz1T0

We are looking forward to this weekend. Cole will have his first "friend birthday party". We invited 10 kids to come celebrate at the bowling alley with Cole. I can't wait to see his reaction and to see the joy on his face. He might not have a lot of friends, but the ones he does have are kids he cares for very deeply. We are blessed to have some very special cousins and friends in Cole's life.

Life is full of surprises. Whether you land in Germany when you thought you were headed for Peru or if a crowd of adoring people shout "surprise" to you, embrace life and all the unexpected blessings. We have been on quite a detour for the past six years and there have been countless things to be thankful for along the way. And yes, we'll get to Italy some day but for now Russia is where we need to be.

Look what I can do!

2010-02-07T22:12:00.004-06:00

As the mom of a special needs child, I often need to remind myself of that reality. I see Cole as the little boy I adore and often look past his numerous challenges. I have to stop and tell myself that Cole has special needs. Yes, we live it every single day but at the end of the day, Cole is our son and the only thing that matters is our deep love for him.

I do admit, however, there are times when I assume there are things he can not do. And most often, Cole is able to prove me wrong. I try to "let out the rope" and give Cole the independence and opportunity to do the things boys his age do. Many times I find myself overly cautious and concerned for his safely and well-being.

A few years ago, an old school friend suggested we have Cole play in the special hockey league at Schwan's Super Rink. I quickly dismissed it. I couldn't imagine Cole learning to skate, let alone wearing the necessary equipment. Last year, Connor got skates for Christmas and began skating himself. Cole took interest to it and this year, we decided to give it a try. So every Sunday at 4:20, our family heads off to the Super Rink for MN Special Hockey. It has been the best experience. Cole LOVES putting on the pads and equipment. He has his own jersey (#19) and he loves going to see Coach Chris and his hockey friends. One week there is practice and the next is a game. It is so fun to see Cole skate around the rink. He skates really well and loves to go fast and slide on the ice. He's also known to shoot on his own goalie... oh well! It's so nice to have a safe environment for Cole and young adults with disabilities. Cole loves that we are there for him and he's made us very aware of that. It really made me stop and think. He wants affirmation and a sense of belonging just like we do. And it's our job to provide that for him.

Cole is also learning some age-appropriate play skills. He's been playing his favorite game, Guess Who, with us. It's a game where he has to ask questions about our secret person to determine who our person is. He does an amazing job asking questions correctly and asking questions that allow him to use his deductive reasoning. He has beat me fair and square countless times. It's fun because Connor loves to play as well.

We also had a close friend give a used Nintendo DS to Cole. He was so excited and with a little help from Connor, he figured out how to use it and now plays Mario Kart on the DS. It will be so nice to bring with us when we are out and about. The other day we brought Cole to Connor's hockey game. Cole got a little antsy, so we let him play the DS. It was nice to have something fun for him to do while watching the game. It also helps him sit still (and safe) in the truck. Thanks so much Mel!!!!

He's also mastered Mario Kart on the Wii. With the help of MAC and Connor, Cole has learned how to play Wii games and now gets 1st or 2nd place in nearly every race he's in. The boys enjoy playing together and it's so nice to have an activity for him that other kids his age are playing. And it's wonderful to have something fun to do inside during these cold winter months!

We are working on plans for Cole next school year. Right now, we are thinking he will attend McKinley (his home school where Connor goes) starting in September. He'll go there in the morning and then head to MAC for the remainder of the afternoon. Cole is SO excited to go to school where Connor, his cousin and friends go. Cole has never been in a main-stream school, so I think the part-time transition will suit him well. I'm starting the process of many, many meetings to get things underway. Lots of meetings, assessments, paperwork, more meetings and other important things. Managing Cole's care is a tremendous amount of work, but I get so much joy from seeing things fall into place for him.

Cole is really looking forward to his upcoming birthday. He will turn NINE on February 28th. We are so excited for him. He loves birthdays and surprises. We are planning a family surprise party for him and I'm in the midst of planning his first-ever friend party. I can't wait for that!

Speaking of birthdays, I just celebrated mine this past weekend. I'm so fortunate for all of the people who came out to celebrate with me. We had so much fun at Tanners and POVs. I shared a picture taken at Tanners with a few of my high school friends. It was such a fun night and made turning thirty-something a little easier.

Thanks for taking the time to read my blog. I even get requests and questions as to when I'm going to post another entry. I love to hear those comments. It's hard to know if people read this and to get feedback is very reassuring. Cole is so fortunate to have so many people on his team. We all have a part in helping him and it's paying off in a big way... after all, look what he can do!!!

Countless blessings

2010-01-07T18:00:00.003-06:00

I hope you all had a wonderful holiday season. If you're anything like me, you love it while it's here but are just as happy to see it go. I like to get back into routine and reflect on the many blessings of the past year.

I'm most thankful for is being able to stay home with my kids. Yes, they are both at school during the day, but managing Cole's care is a full-time job alone. I love getting the kids ready, seeing them off to school and working productively throughout the day until my loved ones get home. It's something I have longed for since Cole was born and I'm extremely grateful for the past 18 months. I haven't take one hour of it for granted.

December brought a lot of fun to our house. As you know, there was a lot of snow over Christmas and Cole was in heaven. The boys and Pat spent countless hours plowing, shoveling, sledding and playing in the snow. Pat put the plow on our yard tractor so Cole could plow the snow. Pat would hop on his 4-wheeler and Cole on the "Husky". I'm not sure who was having more fun! Cole plowed our driveway (and the street) like a pro. During one snowfall, he was outside while Pat was working in the garage. Pat called me out to look at how perfect Cole had plowed the driveway. He had to turn the direction of the plow and everything. Pretty amazing!! I think I see a business possibility in Cole's future.

Christmas went pretty well for us. The snow saved us to some extent. Cole had an outlet for those times when being inside was too much for him. He loved opening presents and tore them open as fast as he could. He got a new John Deere backpack that quickly replaced his old one and many other fun things. Cole understood Santa and was super excited to see he left lots of presents by the fireplace. He had a great time visiting Santa a few days before Christmas. He sat by him, rang bells and talked to him about Christmas. It sure made us proud.

One great thing for Cole was learning to ice skate!!! His Aunt Katie took him to the Depot downtown where Cole skated for the first time. Not surprisingly, he picked it up with ease. After all, this is the boy who taught himself how to ride a bike without training wheels at age three. Cole and Katie skated for more than two hours and Grandma Eileen said she has never seen Cole smile so big. Just this week we signed Cole up for MN Special Hockey; a league for children with disabilities. He'll start next weekend and we can't wait for that.

We are seeing a new challenge with Cole. It goes without saying that he adores his brother, Connor. Now Cole wants to be doing everything Connor does. And he wants Connor to do whatever he wants to do. There are a lot of things they love to do together: play the Wii, wrestle, sing, play Candyland, Lincoln Logs and go outside. But there are many times when Connor doesn't want to do what Cole wants him to do, or furthermore, it might not be possible. Connor has his own life, places to go and friends to play with. Cole doesn't understand that concept and it's bringing on some very challenging situations for our family. I've talked to Cole's therapist at MAC and she is brainstorming ways we can work through this.

All in all, it's been a good winter and we're having a wonderful time seeing our kids enjoy it. It brings back memories of jumping off my roof into the snowbank with my siblings and skating in our backyard ice rink. It's so fun to be a kid and there isn't anything more rewarding than creating memories for your own children.. what a blessing.

Check out these videos. One is of Cole skating and the other is from the our visit to Santa.

So much to do, so little time

2009-12-09T21:58:00.004-06:00

My last post was a month ago already. "Update blog" has been on my to-do list for weeks now. You know how this time of year is, way to much to do with not nearly enough time. So we prioritize and use our time wisely. And frankly, I can honestly say I have no guilt when things wait for tomorrow. I check off plenty each day on my to-do list and that is good enough for me.

Cole has been doing awesome. For the most part, we've had a few really good weeks with him. He seems to be past the tough fall/winter transition and is now elated that he can plow snow with our tractor. Cole loves Christmas and this year he did an awesome job decorating the tree. He pretty much did it himself. He even brought a chair over so he could place ornaments on the top part of the tree. He was so proud, as were we.

Cole is also doing great at swimming. After three years of private lessons at Foss, he is starting to catch on. He has come so far. Not long ago, half of the lesson was spent trying to get Cole to keep his goggles on for more than a minute and getting him used to putting his face in the water. Now he wears his goggles the entire lesson, dives for things under water, jumps off platforms and is learning all kinds of swim strokes. He still has a ways to go, but we are pleased that he is learning how to be safe in the water. That is what is most important for Cole. (see video below)

Cole is also making progress with some of his activities of daily living. He is now brushing his teeth twice a day with fluoride toothpaste. It has taken months and months of therapy at OT, but Cole is finally over his "Bear" non-fluoride toothpaste and he knows not to swallow the regular stuff. He is also doing a thorough job. I remember back a few years ago when it was nearly impossible to get him into the bathroom. Between teeth brushing and potty training, you would have thought our bathroom was a jail cell. He avoided it at all cost. Ahhh... progress!!!

I have also been able to take Cole to the YMCA and put him in Kids Stuff! This is something we used to be able to do as a family, but for the past 3 years Cole has refused to cooperate. We worked on it for weeks with his therapist from MAC and just last week I was able to take him by myself! To top that, I also took him to Target without Cole putting every toy in sight into our cart. Target was something I avoided with Cole at all cost. He did not understand that he could not buy everything he saw and that you could not ride bikes in the aisles. Thanks to Jen at MAC for helping us conquer that as well!

And to top all of this off, my Mom surprised me a few weeks ago with an amazing gift. At Cole's last benefit, the "team" went in and got me a gorgeous handmade silver Autism pendant. It is very special to me and something I truly cherish. A few years ago, my Grandmother gave me her wedding ring. It didn't fit and I'm not one to wear a lot of rings. My Mom had the idea for me to take the diamonds from the ring and put them onto the Autism pendant. My Grandma liked the idea and after a few months, I finally got around to asking our jeweler about it. My Mom went with me to meet him and I asked him to call me with an estimate. A few days went back and I get a message from my Dad asking me to stop by. I did so and my Mom brought a box for me to look at. I assumed it was something she purchased from the jeweler, so I was completely surprised when I opened it and saw my pendant with the diamonds from my Grandmother's ring!! It was beautiful. I am so thankful to have such a wonderful family and support system. Next to my wedding ring, the Autism pendant is the most precious piece of jewelry I own. It is sentimental for so many reasons and I'm so blessed to have been given it.

I hope you all enjoy this busy holiday season. We are all time-pressed but I want you to take time to enjoy your family and friends. Focus on what is most important. Spend quality time with the people you love and don't sweat the small stuff... chances are it will still be there tomorrow.

My pillar of steel

2009-11-09T15:01:00.006-06:00

I've been reading a book written by a close friend of mine. It's a first draft and the topic is an autobiographical account of her experience with postpartum depression (PPD) and psychosis. I'm about 75 pages in so far and it's a wonderful book. It's already taught me so many things. It's given me a new found appreciation for colic and the downward spiral of PPD.

My friend articulated with fine detail how severe her baby's colic was and how profoundly it impacted their ability to function. As I was reading this part of her book, I could relate really well to the feelings and situations that came from her baby's colic. They couldn't go anywhere, people looked at her with disgust and judged her parenting skills. They were highly sleep deprived and felt hopeless. You see, that is often how life is when you have an Autistic child. It's amazing how two totally different situations can manifest themselves in such similar ways.

As I tried to understand my friends battle and its impact on her life, it made me realize that people probably think the same of me. It gave me an appreciation and new found perspective for how people must feel about our situation. My friend shared bits and pieces of her struggles with me, but at the time, I thought she had it completely together. Not only was I baffled to read about how deep her depression was, but how well she covered it up. I was one of the "over the moon with excitement moms" she loathed in her book. I could not imagine what it was like to live through that, just like people can't imagine what my life is like.

I am blessed to have numerous people in my life who try very hard to comprehend what life is like for me, the parent of an Autistic child. But in the end, they aren't walking in my shoes. They understand, but only to a certain extent. And that's ok. I don't need them to fully understand... I just need them.

Another profound thing I took from my friend's book came in a section where she talked about her relationship with her husband. At this point in her book, their baby was finally over colic and she was reflecting back on how they made it through to that point. She made the most amazing analogy. I tried to find it so I could write it word for word, but I can't seem to find the page I need. It went something like this,

"Thank God my marriage is in such a great place. We were married for 4 years before we had kids. We truly enjoyed each other, traveled, laughed and had fun together. We had such a solid foundation before bringing someone else into our family. It's like we built a tower in the first four years. The situation with our baby gave us a run for our money. It tore away at the windows, stairs, carpet and all the other things that make a tower. But we weren't worried, for we had pillars of steel to support us. Anything could chip away at our tower, but it would never crumble."

I've always wondered why I met my soul mate at the tender age of 14. Sure, I didn't know it at the time, but there was a reason why Pat and I have been together so long and why God brought us together at such a young age. We have pillars of steel. We worked on these pillars for almost 15 years before Cole came into our lives. We've been together for 22 of our 36 years.

The statistics for divorce are upwards of 90% for parents of Autistic children. Yes, they are that high. It's stressful, challenging, daunting, financially draining and many other negative things. But it's also a beautiful thing to see your husband make your son belly laugh, to share stories of triumph, to know there is no other man on this world who could be a better daddy to Cole or a better husband for me. Pat isn't perfect, but he is perfect for me. We're in this for the long haul and we're in it together. Our pillars can hold anything, Autism included.

*We hope you enjoy the pictures. Cole did awesome on Halloween. He rode in a trailer with his cousins and did a great job trick or treating. He went to the door, politely asked for treats and kindly said thank you when he was done.

He also got two big wishes that came true. 1- while home sick last week, he got to see the garbage man take our garbage. We waited at the window for 25 minutes and Connor was late for school, but it was worth it. Cole beamed with excitement and laughed when the driver honked his horn and waved! 2- This past weekend, Grandpa Denny took Cole for his first Harley ride. We were so proud of Cole. He was able to articulate his feelings to Grandpa, "I'm scared Grandpa," he said. That is a breakthrough for him. Cole hopped on without hesitation and his smile could be seen from yards away.

Train and some other fun stuff

2009-10-26T14:50:00.004-05:00

Sorry it has been a while since my last post. As usual, life has been pretty crazy at the Schusted residence. We've been trying to enjoy the coldest October on record, I stress... trying.

The change in seasons is hard enough on Cole, especially when it happens so abruptly. A few weeks ago we did get the opportunity to take Cole on the Osceola Train. We tried this a few years ago and it was very difficult on us. This year it was a whole different story. We came a little better prepared this time around. We chose a train route that was only an hour long instead of 1-1/2 hours. We also brought with us grandparents, as well as my sister, her husband and two kiddos. Cole was SO excited.

He talked about riding the train for at least a week. He told everyone in sight. Finally the day arrived. He and Connor were elated to be able to ride with Grandpa and Grandma in their new truck. I think he just likes to call Pat and I from Grandpa's cool bluetooth phone in the truck. :-) We lucked out big time. There were only a handful of people on the train. It wasn't hectic at all to board (much unlike last time) and Cole seemed to have a better understanding of what was going to happen. He chose his spot right next to Grandpa. They snuggled, laughed and even got to lay their seats back and relax. We had snacks and hot chocolate. It was so fun to see how happy Cole was. He loved the train ride and thought it was so cool to have a lot of his family on board. We took turns walking around the train. Cole thought it was neat to explore. He got a kick out of the different train cars and looking out the windows. We just had so much fun!

It was rewarding for Pat and I see the progress in Cole. After the last train ride, we both swore we would not put ourselves through that again. I had so much pride watching Cole laugh and smile on the train. He talked about what was happening, where we were going and he was so patient and well-behaved. Yes, the taste of progress is really sweet.

The boys have enjoyed playing outside as much as possible this fall. Cole still is mowing a lot and lately he's been using Grandpa's tiller in our dirt. We've enjoyed some nice bonfires, too.

I think Cole's highlight of October was his play date with Adam. Adam is a friend of Cole's that he met while attending Fraser School. Adam had an extra set of tickets for the Wiggles concert and he asked if Cole and a PCA wanted to go with him. Cole was really excited. He got home and told us how he got to give Jeff a high-five and that Jeff also gave Cole a thumbs up! The PCA said Cole did an outstanding job. He sat nicely for 1-1/2 hours and participated every time it was requested of the audience.

The best part for me came from Adam's PCA. She used to work with Cole at Fraser Academy. She told our staff to inform Pat and I that "Cole is an entirely different kid. He has made so much progress and she was very impressed by his participation and behavior." As you can imagine, that was wonderful to hear!

Keep up the hard work Cole. It is paying off BIG TIME.

Like the sign Connor made for your room says.... "We love you Cole."

Who gives a s#&t?

2009-09-30T13:47:00.006-05:00

I had an experience with Cole a few days ago that I knew would happen one day... he got teased. Didn't we all get teased at sometime in our childhood? I remember riding my bike when I was about ten and a boy in the neighborhood ran up behind me and whipped a handful of those spiky stickers into my back. It hurt like heck and all I could do was pedal faster. This is where my big brother and his friends came in handy... they marched over and told the boy they would dig a hole and bury his head in the dirt if he came near me again. Needless to say, the boy stayed clear of me from that point on. I have to admit, there are times I wish Cole had an older sibling who could look out for him and explain things to kids who are around Cole's age. It's not my place to and Connor is too young to be chatting with 4th graders about life with his Autistic brother.

It was a beautiful fall day, one of the many we've had this September. Cole wanted to mow the grass and I chose to sit on the front step and watch. Cole was in his glory. He was mowing back and forth, laughing, smiling and doing his "I'm excited" hand gestures. I heard a group of kids coming up the block. It was a group of boys from the neighborhood who were maybe a year or two older than Cole. I saw one of the boys whisper something to one of the other kids while looking at Cole, and then they burst out laughing. My heart just sank. I'm not certain of what was said, but I'm pretty sure it wasn't a compliment.

What happened next has been on my mind for a week. I immediately looked at Cole, who was oblivious to the situation. He had a huge grin on his face, he waved at me and said, "Hi Mom". He didn't look up at the kids and just kept mowing. He had no clue what occurred and most importantly, he could have cared less. I thought, you know... that isn't a bad way to go through life. Honestly not giving a s#&t what other people think. How wonderful is that?

How many people can truly say they don't give a rats a## what other people think of them? Think of how many times in your life you've been stressed, worried, scared, embarrassed, insecure, hurt or picked on.

Is Greg going to like my outfit? Why did Debbie decide to go ask Sarah to the movie and not me? Why was Alex picking on me at the bus? Were people at the lunch table staring at me? What are people going to think of my presentation? If I could just lose 15 pounds. I wish I had as many friends as Kyle does. What are people going to think of my new hair color? Why did I say that to my boss? I'm not good at sports. My house is never clean enough.

We've all been there and chances we are there every day, maybe multiple times a day. We are so busy worrying about what everyone else thinks of us, that we lose sight of what is really important. We cause undue stress and anxiety to ourselves. We are so hard on ourselves.

Cole probably won't have much of that in his life. His brain isn't wired to think that way. He lives for himself and isn't caught up in how well he can throw a football or what type of shoes he wears. He's just Cole, take it or leave it. He could give a s#&t when kids ride by on their bikes and make fun of him. He's got bigger fish to fry (and lawns to mow). Think of how much stress he's saving himself.

I think we could all learn from Cole. He's 100% comfortable in who he is. He doesn't know any better and frankly, doesn't need to. He's perfect just the way he is. He loves his family and HIMSELF unconditionally. I can't stop thinking about it, as I think that is one of the most beautiful and profound things he's taught me.

Think about this. Think something positive about yourself. Don't worry if the neighbors get a new car and you can't afford one. Who cares if you got tongue tied on the conference call? Does it really matter if your daughter isn't the best skater on the ice? So what if your jeans are a little tight this fall. If we could all just be confident and comfortable with who we are, life would be much more pleasant. After all, while you're worried about what people think of you, they are probably too busy worrying about what everyone else thinks of them... so in the end, who gives a S#&t?

A few surprises

2009-09-14T18:32:00.003-05:00

Some people like surprises and some don't. I've really grown to love them, especially when they come from Cole. He threw a few our way this past week and I can't resist sharing them.

As most of you who know, dental visits are incredibly difficult for us. Cole is deathly afraid of the dentist. In the past, we've had to secure him in a Velcroe straight jacket and hold him down. We've tried medication to calm him. It got to the point where we could not even drive on the street that led to the dentist office.

Thankfully, Fraser Academy gave me the contact information for a dentist used by one of their students. Dr King has been a huge blessing for us. The first time we took Cole to his office, his hygentist, Marlene, was like an angel. She has a special room of her own where she spends most of her day working with kids like Cole. Cole got to perform all of the teeth cleaning tasks on a teddy bear. He LOVED it. At that visit, the dentist got to take a quick peek at Cole's teeth but that was it. It was determined that Cole would need to be put under to get a full examination and for any necessary repairs. I blogged about that a few months back.

Last week it was time for Cole's 6 month check up. He was resisting the dentist appointment until I reminded him about the teddy bear. At that point, Cole was amused with excitement. We drove to the office and he was giddy. He walked into Marlene's office and worked with her to perform the teeth cleaning procedure on the bear. Cole did everything. He got to give the bear a ride, choose how the lights were going to be, turn on some music and even use the polisher. Then it was Cole's turn. Surprisingly, he sat right down in the chair and let Marlene count all of his teeth!! After that, he needed a break and wanted to work some more on the bear. Marlene asked if she could polish Cole's teeth. You could really see the anxiety mounting. She saw it and said, "How about we polish 1 tooth of yours Cole." Cole looked at her and said, pointing to his front tooth, "This one.". He sat in the chair and she did just that. Then it was the dentist's turn. Cole actually let the dentist look in his mouth for a good minute. I couldn't believe it! It doesn't seem like a lot, but that is a huge success. As my Mom always says, "He just has a way of surprising you!"

The next surprise came this past weekend. Connor had his first flag football game. Pat is the coach so he had to be there. Last year, I had PCA staff set up for each game. This year, I couldn't get staff for every game. I decided I would try to take Cole to the game. Knowing all to well that I might end up chasing him off the field and carrying him to the car while kicking and screaming. I made sure my Dad was going to be there to help, just in case.

We got in the car and headed to the game about 20 minutes after it was supposed to start. I called my dad on the way who said the game hadn't started yet. We stalled a little by getting gas and then made our way to the field. Cole blew me away! He sat so incredibly well at the game that I still can't believe it. He was like every other little kid there. He sat nicely and watched, sometimes played with his sand toys and other times climbed on my lap for a snuggle. I was so proud. I wish there was another word because proud is quite the understatement. Cole was so well-behaved that I called the PCA and asked her if we could meet 20 minutes later than scheduled. He was doing THAT good!!

I love it when he surprises me like that. It makes me so proud, especially when I look back on the experiences we've had in the past. Cole is progressing, there is no doubt about it. I'm so thankful, as it gives me something to hold onto in the really difficult times (like when he kicked in the control system in the back of our Tahoe on Saturday night).

Thanks for the surprises Cole... keep em' coming!! We love you so VERY much.

A wild ride!

2009-09-01T19:00:00.007-05:00

As Cole reminded me this morning, it's September! Can you believe it?!? With only a handful of 90 degree days this summer, I feel like it hasn't arrived yet and here we are, with sunsets happening at 7:40pm.

My last entry had us preparing to go up north to a cabin with Pat's family. We prepared Cole the best we could, packed up and hoped for the best. It turned out to be a wild ride for us....

The first two days for Cole were as close to unbearable as they could be. Cole was incredibly out-of-sorts. His behavior was extremely difficult. To say we were struggling with him was an understatement. Cole was very aggressive. He was screaming, punching, kicking, yelling, crying, slamming his head against the truck window, kicking the truck, running and jumping in the air and landing on his shins. He was so physical to Pat, Connor and I. It was out of control and we were a millisecond away from going home without packing up; yes, it was THAT bad.

We were experiencing the two most difficult days with Cole that we's had in a long, long time. Pat and I were doing what we could to keep Cole from hurting us, himself, the cabin and our vehicle. There was a time when he was literally chasing Connor around a park to physically attack him. He is so strong that we could barely contain him and stop the behaviors. And the behaviors lasted for about 36 hours. I wish I was exaggerating.

Thankfully when Saturday morning came, Cole seemed to settle in and accept the change in routine for what it was. He calmed down and for the next 36 hours we all got to enjoy ourselves. Cole went tubing, swimming, fishing and played in the sand. He enjoyed a sword fight with his cousins and he loved finding sticks in the woods. I even managed to find a John Deere excavator that wasn't in use, so he got to sit in it and pretend he was digging with it. Pat took Cole home on Sunday evening with Aunt Katie and Uncle Troy. He did a great job in the car and was thankful to get home and be back in his usual routine.

It's hard to know why he struggled so much. It was a new cabin, a place he hadn't been to before. There were also six boys between the ages of 8 and 3. That made for a really loud cabin at times and I think that was hard on Cole. I think he also got jealous of Connor, who often played with the other cousins, instead of giving Cole the attention he was used to. Regardless, it proved to be incredibly challenging for us and rewarding in the end. A wild ride, none the less.

Since we've been home from the cabin, things have been going pretty well. We took Cole to Bunker Beach yesterday for the first time since 2006. I remember taking him there back then and it was so hard. Cole played for a while, but then stripped himself naked because he didn't like the feeling of his wet swim suit. He was very hard to keep track of and he was really aggressive to me. What a difference a few years makes. He was so happy to be there. The four of us ended up staying for 3.5 hours and we enjoyed the pools, jumping in the huge waves, riding the tubes and even climbing on the high rope above the pool. I was so proud of Cole. He is making progress. I swore I wouldn't attempt this again, but here we are a few years later having tons of success. It makes me realize that Cole can do anything he sets his mind to. He loves to live life just like we do and why should anything stop him?

Another cabin trip

2009-08-20T08:00:00.004-05:00

We are off to a cabin again today. This time we are heading north to stay with Pat's family. Cole is beyond excited. We've been preparing him as much as possible. He woke up this morning and was so excited to see his "new picture schedule" which shows him exactly what is going to happen over the next 4-5 days. He hopped in the Care Cab van this morning and excitedly told the driver what was on tap for him today. "First I ride with Jan. Then I work at MAC. Then Daddy comes to get me (visualize excited flappy arms here). Then we get the boat. And then we drive to cabin!!" Wow- all of that language. Even though I hear it from him every day, it still amazes me when I think back to where he was a few years back. Cole is incredible, in so many ways.

As you can tell, it's been a while since my last posting. We've been busy enjoying the nice weather (now that it finally arrived!). Things have been going well, with the exception of Pat's birthday on August 8th.

I was out of town that weekend on my annual girl's weekend in Lanesboro. I had two staff lined up to help with Cole on the 8th so Pat could take Connor and do something fun on his birthday. Only Cole flat out refused to go. Pat tried everything he could but it wasn't going to happen. Cole refused both staff. He wanted to be with Pat and Connor. As much as Cole loves to be at home, the days without help get long for us all. Cole is very hard to keep entertained for 13 hours. It requires constant supervision, the activity skills of a cruise director and tons of patience. Pat said Cole had roughly 20 stand up, sit downs for aggressive behavior. That is a lot for one day. To top it off, tornado sirens went off at 9:30 that night and Cole is petrified of storms. Poor Pat, not the way I was hoping his birthday would go. Thank God he's incredibly laid back and it didn't bother him a bit. He is such an amazing Daddy to our boys.

I'm posting a few different pictures. Some are of Cole doing some fun things around the house. On Sunday I was thrilled to see him join a sword fight that Connor and his friend were having. Cole played along so well and enjoyed many laughs and imaginary play. That was a huge deal, as last summer Cole would get so aggressive when friends were here and we had no choice but to end the play date.

I'm also showing you a great picture of Cole in the new "Craftsman Rocks" t-shirt I made for him. He loves it and was so happy to pose for me while I took pictures of him. I seriously think it is the first time in 8+ years that Cole has ever stopped, looked at the camera AND smiled. YEAH!! He made my day.

Finally I had to add a picture of Connor- as you know, he's the best brother on this planet. He truly amazes me at how well he helps and loves Cole. It comes naturally to him and we Cole's life would not be the same without Connor. They love one another (and adoringly tell each other). They are best buds.

Wish us luck at the cabin. New environments can be really difficult on Cole. We hope he does well. I know one thing, he's looking forward to "Sword fights with Zack and fast boat rides with Daddy."

Hello there pretty girl

2009-08-02T10:59:00.003-05:00

Things have been going quite well since Cole returned home from the respite house. He was thrilled to see us and even more happy to get back into his normal routine. The number of stand up, sit downs have dropped a lot. There were a few days a week or so ago when he had 20+ in a day. Now there have only been a few each day and sometimes none at all.

For those of you who know Cole, he tends to focus on things for a given amount of time and then move on to something else. For instance, he might be really interested in watching Nemo for a month and just when you think you know it's what he wants to watch, he gets angry when you put it in the DVD player. The same thing happens with his speech. There are things you can tell he's working on at therapy and certain grammatical things he's trying to master. Right now he's learning a lot about adjectives that describe males verses females an d the correct pronouns to use when referring to them. He'll tell us that he is handsome (and nice) and now he greets me often by saying, "Well hello pretty girl." He will snuggle in, kiss my neck and tell me I'm pretty. Isn't that sweet! That is one thing for sure, Cole loves to shower us with affection. We are incredibly lucky in that way. He is constantly snuggling, hugging, kissing, and tickling us.

I have to admit that Cole does have another crush besides me. He has a few, in fact. Alli, his PCA and Brittany, my brother's girlfriend. It's so cute to see Cole around them. He is used to going on "dates" with Alli. But to see him around Brittany is so funny. He gets so shy and coy with her. There are sometimes his emotion gets the best of him and his feelings give him anxiety. He doesn't know how to show or express his emotions so he instead might want to leave. It's interesting to see him navigate his way.

Cole found another crush a few weeks ago when we got our family pictures taken. We had a friend of mine, Mandy, take our pictures. Check out her work at mandybirdwellphotography.com. Her work is amazing! The photo session took place on an old abandoned farm in Blaine. It was the perfect setting for Cole. He got to explore all kinds of neat things. He was in heaven. He asks all the time to go to Mandy's Farm. But it's not just to see the farm, he wants to see Mandy, too. Cole has told us numerous times that "Mandy is pretty. Want to touch Mandy's neck. Go see Mandy at her farm. Where's Mandy?" He talks about her all the time and I do believe she is his latest crush.

I love to see Cole express his emotions. He has feelings just like we all do. He thinks girls are cute and gets the same butterflies we do. We're so lucky he can share those feelings with us and tell us what he's feeling. I can't imagine not knowing about his little crushes and more importantly, how he feels about me. There is absolutely no doubt in my mind just how deeply he loves me and how much he enjoys being around me. After all, I am his "sweetie".

Here are some pictures from time we've spent on our boat over the past few days. Cole has thoroughly enjoying jumping into the lake, playing on his tube and even fishing (Pat is SO proud). Like I said, he loves these things just like we do. To see his experience them is so rewarding.

Love you Cole, you're my guy.

October in July?

2009-07-25T10:02:00.003-05:00

We've been quite busy here at the Schusted household. After the fourth of July, it was time to prepare for our annual Cooney Family Vacation up north. We rent a huge cabin at a lake near Grand Rapids. It takes a lot to plan meals for 13 people, do the shopping, wash clothes, pack for our family and prepare to be gone for a week.

Connor and I left with everyone on Saturday the 11th. Pat stayed behind with Cole and they came up on Tuesday with my brother Sean. A week is just too long for Cole to be at the cabin. The first 2-1/2 days brought beautiful weather. We spent a lot of time outside; boating, swimming, playing yard games, etc. When Pat arrived on Tuesday afternoon, the weather had taken a bad turn. It rained that whole day and the high temp was in the low fifties.

Cole was so excited to be at the cabin. Despite the cold weather, he was content being inside and checking things out. We had a shrimp boil that night and the kids thought it was cool to eat the food off newspaper on the table, using our hands. He went to bed quite well and loved being on the top bunk.

On Wednesday morning, Cole woke up at 5am. He was so excited and had lots on his cabin agenda. The huge bummer was the weather. It wasn't raining, but it was still 50 degrees with 25+ MPH winds and clouds...YUCK. Cole doesn't understand that you can't swim when it's 50 outside. So after breakfast, Pat and I walked down to the beach with him, inflatable boat in tow. There were people literally walking around the grounds in parkas and here we are at the beach! We tried to redirect Cole and give him other things to do, but like I said, when he goes to the cabin there are certain things he must do. Crummy weather isn't going to stop him.

This weather went on all week. It was so hard on Cole (and Pat & I). Cole didn't get to go on boat rides. He didn't get to tube or play outside much. It was so hard to keep him entertained and calm. Cole was mad, frustrated, bored and full of anxiety about what we were going to do. Last year the weather was a little more cooperative and I recall it being so easy to watch Cole. We all sat outside and watched the kids play. We went to the beach and on boat rides. This year it just wasn't possible. Instead, Pat and I had to constantly take turns being within 5 feet of Cole because he became so mad and aggressive. He slammed doors and even threw his scooter while at the play area with other kids. Thank God it didn't hit anyone.

I felt really bad for Pat. I at least got two nice weather days; days filled with relaxation. He did not. Even the chartered fishing trip we got for all the guys as a gift was not a success. The weather that day was 51 degrees, rain and mist, with strong winds. They couldn't fish Lake Winnebigosh. The guys froze and only caught a handful of fish. It wasn't what we were expecting.

We got creative doing things with Cole. We took him into town to see Craftsman tractors at the Sears store. Cole was so excited. He walked in and said, "Ta da... Merry Christmas!". We also went to the local YMCA and attended open swim (for the 1 hour it was open!). On our last night there, we found a fun pizza place that had lots of fun games for everyone to play. We really did make the best of it, but it was a huge challenge for Pat and I. We vowed that if the weather forecast is like this next year, we won't bring Cole up. It was too hard.

We left the cabin a day early. We worked our way home on Friday afternoon and followed my parents and brothers. We stopped in Aitkin at the DQ. It became apparent that my dad was very sick. He was unusually winded the past few days of our vacation and more notably so while packing up to leave. By the time we got to Aitkin, he could barely walk from the truck into the DQ. We were all very concerned. It was decided to take him right to the Mercy hospital when we got into town.

The doctors determined that my Dad had pneumonia. He was admitted to the hospital, given antibiotics and fluids. They talked to him about a nutrition plan and urged him to stop smoking. The doctors were very thorough, giving him a CAT scan, ultrasounds and many other tests. Luckily everything came back good except the pneumonia. Slowly Dad started to feel better. He also made the decision to stop smoking. We have all been hoping for this for years. My Dad has smoked since he was 15 years old, going on 50 years! It is obviously the years of smoking have taken their toll and it's time to stop. We are so thankful Dad came to this decision and we fully support his decision. Please keep him in your thoughts and prayers as he takes on this highly difficult task.

This week, we are so glad to be back in routine. Cole needs it. He functions so much better when curve balls aren't thrown at him. He needs MAC, swim lessons, time with his PCAs and time at home.

We had a really rough weekend with him after we got home from the cabin. It was another three days of no plans and no PCAs. Even though we tried to do lots of fun things with him, we eventually our bag of tricks was empty. Cole reacted and it was one of those weekends when he broke the inside door of our truck, he resumed to being VERY physically aggressive with us and it was a "just get through this hour" type of weekend. We couldn't go to our nephews championship baseball game and we couldn't visit my dad when he got out of the hospital (we tried but Cole wouldn't stay). These weekends are incredibly hard, especially when you look around the neighborhood and see families walking their dogs, kids making up dance routines in the front yard and having play dates. There are so many things we can't do. On weekends like the one we just had, seeing those reminders really hits home.

Cherish the little things in life. Even if it's riding down the road with your kids staying in their car seats or pushing your child on a swing. Appreciate the flexibility you have, the fact that you can reason, discipline and explain things to your children. Listen to their voice as the tell you about the bird nest they saw under the deck. Watch them as they form friendships. Take pride in seeing them learn from their mistakes. Appreciate going with the flow and not having to worry about the ramifications. Take it all in and cherish it with all your might.

4th of July, Cole's favorite holiday

2009-07-06T10:27:00.006-05:00

Cole waits all year long for the 4th of July. He LOVES fireworks. This past weekend was no exception.

We had a great time on the 4th. We hosted a get together for our families. Everyone brought food and drinks to share and we enjoyed a gorgeous afternoon and evening together. Cole did really well having 15 people at his house. He played with the kids on the new water slide (more about that later) and spent time mowing the grass and using our blower to clean off the paths around our yard. Cole loved it when Pat did his mini-fireworks show in the back yard. And Cole was giddy with excitement at the caravan of cars who followed us to the fireworks.

Cole sat on the blanket and snuggled us for 40 minutes while we waited for the show to start. He did amazing. Never once did he get upset or even ask when they were going to start. He sat on the blanket and took turns snuggling with various family members. He ate his Doritos and drank his grape juice box- happy as could be. When the show started he was thrilled. He loved the John Deere green fireworks and sat and watched in delight. It was so fun to see him so happy and just loving the show. He waits all year for this day.

The day didn't start out as well. As I've said in previous posts, days off from Cole's regular routine are always a challenge. Cole needs a consistent routine. He needs to know what to expect. If you deviate from that, there are always ramifications.

Cole had the day off from MAC on Friday. We had a great morning together. I took him to Home Depot to see tractors and to CostCo to buy things for our get together. He was so well behaved and loved spending time with me. I even surprised him by taking him to Sears so he could sit on the Craftsman tractors. He was elated. I don't think he knew how to tell me just how excited he was, so he said, "ta da.... Merry Christmas!!". It was so cute. He checked out every single tractor they had, engine and all. I love seeing him smile like that. After our shopping excursion, he spend a few hours with Auntie Katie, who had just returned home from six months abroad.

At 8pm that night, Cole really wanted to go to the park. He wanted Connor to come and to bring their scooters. We tried hard to persuade him otherwise, but it didn't work. The anxiety level was way too high. We hurried and got things in the truck and I took the boys to Lions Park. It was fun, with the exception of me having to run through the trails chasing the boys in my flip flops and skirt. Clearly I was not prepared for this! Luckily Connor was with me. He is such a life saver for me. He did an awesome job keeping up with Cole and getting him to slow down or stop so I could catch up. Somehow we made it through safely and ended up having an ice cream treat before heading home.

The next morning was the 4th. Cole woke up and wanted to use his water slide. The boys have one of those inflatable water slides that you attach the hose to. They climb it and slide down. It has given them hours of entertainment over the past four summers. Pat got it down from the rafters and set it up. It usually inflates in about 30 seconds. Not today. Pat found several holes from critters. He patched them but there were still countless tiny holes from the vinyl getting stretched over the years. It soon became evident the water slide was done. Cole was irate. I mean really irate.

We calmed him down and told him we would try to find another slide. Great... nothing like buying an inflatable slide after writing a huge check to fix the Tahoe this week! Isn't that how it always goes!?!? After trips to several stores and a lot of anxiety on Cole's part, we finally found a new water slide. Cole was beyond excited! We set it up and the boys had a wonderful time playing with it. We kept it inflated all day and the cousins were able to enjoy it, too. It is so nice to have an activity that Cole enjoys with other kids.

The get together we hosted went really well. Cole was happy to see everyone and he did a great job at finding things to entertain himself when he needed time alone. Typically when Cole is at a family gathering, he'll play with everyone for a while but then take time to himself. On this day, he mowed the grass and used the blower all over the yard! Later on in the evening, everyone sat in the back yard while Pat set off fireworks in the back yard. Cole loved it.

Soon enough it was time to go to the fireworks. Cole could not contain his excitement. Everyone got in their cars and we headed to the fireworks. Cole loved the line of cars that followed us. He was waving out the window to his relatives, it was so cute! Everything about the show was great. Cole was incredibly well behaved. He was patient as we waited for 40 minutes. He just wanted to snuggle with Pat, Katie and I. He loved the fireworks and simply sat and enjoyed himself. What a night!

July also brings the anniversary of Cole's Autism diagnosis. July 1st was the 5 year mark. It's hard to believe five years have passed since we learned of Cole's disability. It brings with it many mixed emotions. As difficult as it is to think back to that sad day and what it means for our family, I reflect on how much progress Cole has made and it gives me so much hope for his future. I plan to dedicate a blog entry to this subject later in the month. I've been looking over old video of Cole and it's been pretty amazing.

We are getting family pictures taken tonight. Pray that things go well. We have only one family photo from the past eight years. We hope the session goes well. I just want one decent picture of the four of us together. Cole doesn't have to be looking at the camera, as long as you can see his handsome self with the rest of us I'll be a very happy mom.

I hope you enjoy the video below. It was taken this past week by Cole's PCA, Haley. Haley takes Cole to the Mall of America where he meets one of his friends from Fraser Academy. They have so much fun together. I'm so proud of Cole and the play date he went on!!!

Lost and found- twice in one week!

2009-06-17T14:38:00.004-05:00

When people hear me say that Cole is child you can not take your eyes off of, I'm not sure if they understand just how true that statement is. It is far from an exaggeration.

I found out the hard way last week. Pat was at a work dinner and the boys and I were playing outside after supper. We were having a fun time in the yard when I heard the phone ring. I ran into the house to see who was calling. I saw on the caller ID that it was a call I didn't have to take, so I let the answering machine kick in. I looked out the window to make sure Cole was on the swing set where I left him. He was not there. I went outside and did a walk around the house, calling his name (not that he would answer!). I asked Connor if he had seen Cole and he told me Cole went around to the front. I walked into the garage and saw that Cole's green bike was gone.

I immediately ran back to get Connor and told him to run and get on his bike with me. We pedaled as fast as we could toward the park near our house. It's just up the street about 1/4 mile. Almost every night, Cole hops on his bike and races toward the park. He likes to go ahead of us and make us chase him. As I was biking, I didn't see Cole's bike parked by the park like it usually is. Panic set in.

As I approached the park, I could see the swing moving but Cole was not in sight. That told me Cole was there just before me. Connor and I kept biking to the cul-du-sac just past the park. Cole likes to ride in there and race back to the park. As we got there, Cole was no where to be found. Now the adrenaline rush kicked in. I was running out of options.

We raced back home to see if somehow we missed Cole. I did not see his bike or his shoes inside the house. I ran around the house again and there was still no sign of Cole. I told Connor to stay at home and keep Cole here if he were to come back. I called our neighbor and told them I couldn't find Cole. One got in her car and the other started biking toward the fountain in our neighborhood- about 1/2 mile down into our development. I went the other direction and rode back to the park. I was shaking, mad, scared and desperate. It just takes once and I know how these scenarios sometimes turn out.

Fortunately as the park came into view, I saw Cole swinging happily and giggling as I approached him. I honestly have no idea how I missed him. There is one more cul-du-sac near the park and I'm thinking he may have gone into that one while we were searching other places. We'll never know. Thank God it turned out well. I was nearly sick to my stomach. Cole was out of my sight for maybe 20 seconds and I ended up losing him for 4-6 minutes.

Something similar happened to Pat over the weekend. He took Cole biking at Centerville park. It has a nice paved path with some fun dirt trails that veer off into the woods. The last time we were there, Pat and Cole ventured onto one of the dirt paths. It was a small hill that lead into the woods. They took turns riding up the hill and racing back down. They didn't bother to go far into the woods. Last weekend, Pat and Cole were riding and they came to the same dirt trail. They again took turns going up and down the hill. Pat went first and sat waiting for Cole. After about 15-20 seconds, Cole was not coming. Pat hurried up the trail and Cole was no where in sight. Again, panic set in. Pat raced into the woods on the trail, which had several options to turn off of. Pat stuck to the main trail and after a few minutes, he heard Cole. He was out of Pat's sight, biking in the woods for 2-3 minutes. Thank God Pat was able to find him and that Cole did not go off the main dirt path. The alternative is much to scary to think about.

When people say "it can happen like that", it really can. Especially with kids with Autism. They seldom respond to their name and they are curious. They don't understand what danger is or why you tell them to stay by you. Furthermore, they don't have the communication skills or presence of mind to tell their guardian what they want to do or where they want to go. They just do it.

Cole is eight years old and we can not take our eyes off him. We try our VERY best but we are human. Phone calls happen, we make assumptions on what Cole will do based on his past behavior, we listen sometimes instead of look. This week was a scary reminder of just how quickly Cole can escape. It just takes a second. We have a GPS child locator on order and it can't get here soon enough. Another "set of eyes" will be so helpful.

I uploaded a few pictures from this week. In one, you can see how well Cole does watching the baseball when he's hitting. He was two for two this week! The other is of Connor at a birthday party he went to. It was so fun. The RAD Zoo was there with all kinds of animals. In this picture, the kids are holding a python snake!! The family was so gracious to invite Cole. Cole opted to go bike riding with Pat instead. I'm happy they thought to include Cole, as that doesn't always happen.

We are looking forward to this coming weekend. Cole will be at the respite house while Pat, Connor and I head up the Arrowhead to camp, fish, canoe and stay at a resort for a few days. We are really looking forward to it! It's a slightly belated 12th anniversary present to ourselves. Considering 90% of parents with Autistic children get divorced, I think 12 years warrants some serious celebration. My husband is amazing and I wouldn't give him up for anything.

Parade season

2009-06-07T15:28:00.005-05:00

We survived the first parade of the season. This past week was Tower Days in Spring Lake Park. My parents are still residents and the parade route nearly goes right by their house. The weather was absolutely perfect, so I took the boys to the parade. We all met at my parents before and Grandpa Denny did the usual. He hooked up the trailer to his John Deere and loaded it up with grandkids, lawn chairs and blankets. The kids love this part, I think it's the best part of the parade. What better way to show up to a parade than to be escorted by your Grandpa driving a cool John Deere tractor.

We lucked out and found a great spot real close to the road. Cole did quite well. He was a little impatient at first, but then he saw the long line of fire engines start up the street. They blared their sirens and sounded their horns. This caught Cole's attention. It was loud for all of us. I wasn't sure how Cole would react. He did great. He covered his ears and took a close look at all the shiny trucks. The parade continued on. It didn't take long for Cole to tell me, "Mom, go home in 10 minutes." (That's his new thing... to tell us how long he's going to do something... 20 more minutes mom, if we're at the park and 3 minutes mom, if we're eating supper). I told Cole we would go home after the parade and tried to ignore his anxiousness.

Cole found ways to cope. If he wasn't in the mood to sit by the crowds or look at the floats, he would simply go check out the fire hydrant or play on Grandpa's tractor. It worked great. We would constantly check on him and call his name when we knew there was something of interest to him. I was so proud at his ability to self regulate himself, without direction. Cole knew when it was getting to be too much for him and he knew what to do about it. He didn't get mad or throw a fit. Instead, he played on the tractor or came to snuggle up with me on the chair. I was so proud of him.

I was also proud when he took it upon himself to join the kids and get some candy for himself. He even sat down on the pavement to catch a glimpse of the band. When we looked at our watches, it was 8:10 and we had been there for over an hour. We decided to pack up and leave and beat the rush. Cole and Grandpa drove the tractor back. Soon after, the boys and I left for home. It went just great. Connor had an awesome time and got a lot of attention for the cool green mohawk he was sporting that night. He was especially excited to see his Jam Hops gymnastics friends in the parade... that was super cool!

I thought it was super cool that we were able to see the parade and enjoy ourselves. In the past, Cole has not allowed that to happen. It's not his fault, it's simply that some things are just too hard for him. Think of how much sound and stimulation there is at a parade. Not the best and most appropriate place for a child with Autism.

Once again, Cole impresses us with his ability. He is improving with every single day. I could not ask for anything more. Life is good. In fact, life is great. My two boys are amazing and they fill my heart with so much joy and love. I'm just plain lucky.

On a side note, I have to share something Cole said to me this week. He has been cutting the grass quite a bit for us. Well there is an open area of long, tall grass about a mile from our house. We drive by it nearly every day. Cole was in the truck with me on Thursday and said, "Mom I want to cut that grass." I said, "Cole, that grass isn't ours. You can cut our grass." Cole replied, "I would really LOVE to cut that tall grass Mom."

And to think I was wondering if he would ever be able to say "want juice".

PROGRESS... my favorite word in the English language

2009-06-01T13:00:00.007-05:00

Over the past five years, Pat and I have always said that life with Cole is going one of two ways... we are either on a good wave or a rough wave. For the past four to six weeks, we've been on a good wave. Things have actually been quite good for longer than that, but spring has really made life a little easier in our often chaotic household.

The best thing for me has been the countless people who are commenting on Cole's progress. AKA, may favorite word of all time. You know how life is, you see certain people nearly every day and sometimes it's hard to see the change in people. Before you know it, you are getting wrinkles, your hair has more gray and your kids are outgrowing their shoes in three months time. After the hybernation of winter is over, I'm always amazed to see the kids in the neighborhood out playing. They grew a few inches, have a whole new set of tricks to show off and have gained a ton of knowledge. I've always said, "There is nothing more consistent than change."

With Cole it's different. Pat and I are constantly noticing the progress he makes. We talk about it several times a day. With our families, Cole is often the topic of conversation. It seems everyone wants to share the positive interaction or experience they've experienced with Cole. I think our entire family feels a lot of gratitude when they witness Cole's progress and his new capabilities. We all take pride in it and want to share the wonderful news.

It's especially fun when people who don't see Cole as often comment on how well he is doing. We had neighbors over this past weekend. They were so impressed with Cole's improved speech and his new social skills. We also have a PCA who works with Cole once a month. Cole saw her on Saturday and she herself commented on how well he is doing and the progress he's made in the past month. Another PCA felt compelled to call me to tell me what a wonderful job Cole did at the Mall of America recently. The two of them met a former Fraser Academy friend of Cole's and his PCA at the mall. Our PCA was so proud of Cole for playing so well and for acting and talking so appropriately with his friend. Even the transportation drivers comment on how well Cole is doing.

It is incredibly rewarding to see the progress ourselves and for others to notice it as well. As Cole's mom, I know how incredibly hard he works. I know first hand how much more difficult things are for Cole, things that most kids pick up automatically. Pat and I have no set goals or expectations for Cole. Our goal is to love him like crazy, turn over every stone while we're on this journey and treat him like he can achieve anything. We want to look back and know we did all we could for our guy. I think this attitude helps us really appreciate the progress Cole makes. Instead of being let down, we are constantly impressed and amazed by him. The future is unknown, but I do know it is BRIGHT.

I wanted to share some pictures of Cole and his cousins. We took the four boys to a park and let them ride their scooters down a grassy hill. They had SO much fun!! They took turns riding down the hill and scooting all around the paths. They even peed in the woods together, just like boys should! I love the picture of the boys on the bench. Cole loves his cousins and you can tell from the smile on his face that he was one happy boy that afternoon.

There is also a picture of Cole helping me make breakfast. He made the scrambled eggs almost completely by himself! He got all the ingredients and cracked the eggs (perfectly) by himself. He stirred them and added the salt, pepper and cheese. Who would have thought!?!?!?

I also posted a short video of Cole driving our lawn tractor in the backyard. This is proof of his progress right here. Cole has so many skills and so much to offer. Just look at my boy.

One a side note, please say prayers for my close friend and former job-share partner, Karla Rapp and her father, Kent Gerzema. They found out some sad and frightening news on Saturday. Kent was diagnosed with brain cancer and a tumor on his lung. They are an amazing family who could really use our support and prayers right now.

Brag about my boy

2009-05-23T14:22:00.002-05:00

Spring has made Cole one happy young man. I can't stress just how much Cole loves to be outside. He has been tilling with Grandpa Denny's mini-tiller. Cole has found just the spot in our yard where the grass never grows. He took it upon himself to start digging and tilling the dirt. It's made quite the mess, but that is ok with us! Cole has also been driving his battery-operated John Deere tractor around the yard. He thinks he's mowing it just like Dad does. He'll back up when Pat does and speed up and slow down to synch up with him. It's so cute to watch. We also go on tons of bike and scooter rides. The one challenge we are having is that Cole thinks it's ok for him to take off on his bike and ride the 1/8 mile up to the park in our neighborhood. He moves very fast and there have been a few times when he's "escaped". Luckily we are on top of the situation and we know where to find him.

Cole also loves to take me for walks in the woods. We are fortunate to have a big yard filled with tons of trees. Cole thinks it's a big woods and we walk all through the trees and brush, looking for deer, bunnies, squirrels and other fun things. It has been so nice to be able to let the boys play outside and enjoy the fun that comes with springtime.

What has been even better is Cole's ability to tell us what he wants to do. He asks to interact with us, to do what he's doing and what he's been up to. We marvel at how much his speech continues to progress. It is nothing short of miraculous. The other night I told Cole it was time for bed. He complied so well and when I kissed him goodnight, he looked at me and asked. "Are you going to go to bed, too?". I said, "Maybe in a little while.". Cole replied, "Maybe you'll go to bed at three?!" Cole has been having a lot of good conversations with our neighbor, Jared. He's asked Jared about his tractor, about when he plans to mow next and other "interesting" things. He greets Jared appropriately and other than the fact the conversation may not be socially appropriate, it is a good conversation from an expressive language standpoint. I could go on and on with examples... and there was a time when I couldn't imagine Cole saying, "I want juice."

Last weekend I had a great day with Cole. It was the 4th Annual MN Autism Center walk around Lake Calhoun. For those of you who recall last Saturday, the winds and temperature were both around 40. We bundled up in winter gear and headed to the lake. Pat left in the morning for a 4-day fishing trip up north, so the boys and I met up with other family members. It was so nice of them to come out on such a cold and blustery day to support Cole and MAC. Cole did AWESOME. We walked all the way around the lake, 3 miles to be exact! The first two miles were very hard. The wind was coming across the lake and slamming into us with water particles mixed in. Not one person complained, although I think the wind was too busy taking their breath away! We took turns pushing Ethan's stroller; I think that was Cole's favorite part. MAC had several stops set up around the lake and Cole would take it upon himself to greet the workers. Of coarse he knew them all by name. Soon enough, we made our way to the west side of the lake and it was like an entirely different day! The sun was shining and the winds were no longer pushing against us. We could not believe how well Cole did. For the first time, I didn't have to be stressed about him staying on the path and out of the water. He followed the group and really enjoyed himself. He even found a way to snuggle me while we were walking. I was so proud of him.

After the walk, we all went to Noodles & Co for lunch. Pat and I very seldom take Cole out to restaurants. It is simply too hard. I think we've done it maybe 1-2 times in the past year. Given the day Cole was having, I wanted to give it a try. We got our food and Cole sat with everyone at the table. Cole was incredibly well behaved. He sat nicely and patiently, eating his spaghetti. I had to spend more time keeping Connor in his seat than I did keeping Cole on task. That was a first!!! It was such a pleasant way to finish the walk.

Finally it was time to meet Haley the PCA. We met at the movie theater and Cole hopped in her car without hesitation. He did so, knowing she was going to drop him off at the respite house later in the afternoon. Cole had looked over his picture schedule a few times that week and he was well-prepared for the few days that were ahead. Thank God for BoardMaker!!!!

That night, Grandma Schusted watched Connor. I had some high school girl friends over for drinks and appetizers. It was so fun. We had a nice time catching up and enjoying ourselves. I picked up Connor early the next morning and took him to church; something we can't always do when Cole is home.

On Monday the weather was beautiful. Connor and I decided to go to Cole's Miracle League baseball game. I wasn't sure how Cole would react to seeing me there. I took the chance. He wasn't scheduled to come home from the respite house until Wednesday. I missed him and wanted to see him. Cole and Charolette from the house got to the game a little late, so I was in the stands when he arrived. Cole noticed me right away. He looked my way and gave me a wave. I went over and gave him a few hugs and kisses. He looked at me right away and said, "I'll see you on Wednesday. I'll come home Wednesday." WOW!!!

Sure enough, after the game we all walked out to our cars together. Cole gave us more hugs and kisses. He left with Charolette and didn't say one word about not being able to come home. I couldn't believe it. It tells me how much he must like the respite house and just how much those picture schedules help him.

Cole got home on Wednesday night and we've been having so much fun ever since. He has been so happy and cuddly. Cole and Connor even had a pretend sword fight today! He loves us all so much, it's so obvious. I wish I could put into words just how proud I am of my little boy. With the tools he has to work with, he has accomplished amazing things. Sure, we have a lot of challenges, but to see each little victory and improvement is more rewarding than anything I've ever done in my life. I'm so lucky to have that. Cole is my guy and I love him more than words could possibly convey.

Happy Memorial Day to all! Thanks to our dedicated troops.

Things have been good!

2009-05-14T07:44:00.007-05:00

I hope all of you Mothers out there had a wonderful Mother's Day. I had a great Mother's Day weekend. I'm so thankful for the three amazing boys in my life.

As usual, Mother's Day weekend was also the same time as the fishing opener. Pat had plans to go fishing all day on Saturday. I had a PCA scheduled to work for a few hours on Saturday. I knew this would help break up the day for both Cole and myself. Unfortunately, the PCA had been sick since Tuesday and she could not work on Saturday. When I told Cole this on Friday night, he immediately asked to go see Grandma Schusted and go with her to the mall. In fact, he wanted to go that night. We called Eileen right away and she said she would watch Cole for a while on Saturday. Thank God for helpful and understanding grandparents!

The boys and I did several things on Saturday. We started out going to Menard's. Cole loves that store. He wanted me to take him to the store in Coon Rapids because it has an elevator. He behaved really well and had a great time looking at air compressors, lawn mowers and other fun things. Cole picked out a chocolate candy bar as a treat and he waited patiently while we checked out. Then it was off to Coon Creek Park. We had a fun time there. It is a beautiful park with so many things to do. The boys played so nicely together at the playground. They laughed while swinging and playing on the equipment. The park has a bridge over a creek and a nice long walking path. We threw rocks in the creek, ran on the bridge and took a long walk together. The boys held hands and pointed out birds in the sky. It was wonderful. Cole and Connor cooperated so well when it was time to leave. The day was off to a great start!

After dropping off Connor at gymnastics, Cole and I stopped at home and played. Then it was time to take him to Grandma Schusted's house. Cole was so excited to go to the mall with her. When we got there, he looked at me and said, "Cole stay here. You go." Cole had a great time with Grandma and Grandpa. They took him to Rosedale mall. Cole took them on his usual route- elevators, bookstore, DQ, more elevators, etc. Cole could easily have a job as tour guide of Rosedale, Southdale and the Mall of America!

Soon enough, Cole was back at home and the three of us had a fun time playing. The weather was nice and the boys were being so well behaved. Cole got to use Grandpa Denny's tiller and Cole raked his "garden". We rode our bikes to the park a few times and mowed the grass. It was such a nice day, an early Mother's Day present for me. Sometimes these days can be hard; when you are by yourself with both boys. Times like this probably don't phase most families, but in our family, things can get rough when you're out numbered, especially for a long period of time. I was so thankful the day went so well. I was glad Pat got to enjoy a day on the water with his brother, my dad and brother.

On Sunday, I woke up to a host of cards and gifts. It was so nice. I'm so thankful to have such a wonderful husband and two of the best little boys on the planet. Pat took the boys outside so I could shower and get ready in peace. I then took Connor with me to the Mother's Day brunch at Majestic Oaks. We met my family there and had a fun time. I laughed at Connor, who despite a HUGE room full of food, chose bacon and cinnamon rolls! Pat tried to get Cole to go to his parent's house, but today Cole wasn't having it. Instead, he insisted on going to Grandpa Denny's. In fact, Pat and Cole were waiting in the driveway when Grandpa and Grandma got home from brunch!

We spent some time at the Cooney's and Pat was able to visit his mom for a while. We met at home later on and enjoyed a nice evening together. The weekend truly was great. I was so very thankful, as some of my past Mother's Days have not gone nearly as well.

On Monday, Cole played in his second Miracle League game of the season and he hit the ball all by himself (without the tee) for the first time. Check out the video!!!

We are excited for this Saturday. Our families are doing the MN Autism Center walk around Lake Calhoun on Saturday. It should be a fun time and a great opportunity to raise money for the Autism Center. It will be interesting to see how far Cole and Connor will walk, the lake is 3 miles around! After that, Cole will meet up with his PCA, Haley, who will drop him off at the respite house for his fifth stay there.

Last night I officially became a hockey mom. Connor wanted to try Intro Mites after taking ice skating lessons this spring. He did a great job and had so much fun showing his skills. I feel like I grew up in a hockey arena, so this is familiar territory for me!

We are hoping the weather holds out so Pat can enjoy some time away fishing, while Cole is at the respite house. I plan to host a gathering for close friends on Saturday and enjoy quality time with Connor on the other days.

Have a great weekend everyone and Happy Mother's Day to all of you mothers out there. There is no more important job in this world.

I'll take a "normal" child's tantrum any day

2009-05-05T21:46:00.004-05:00

Tonight was rough.

I have many good things to report and I will share them on my next entry. This entry, however, will be one that shows the darker side of having a child with Autism. I contemplated even publishing this post. I love Cole dearly and it's incredibly difficult for me to share his challenging behaviors. But this is reality for us and my goal with this blog is to share the reality of living with Autism. The reality isn't pretty at times. Times like this make me realize how badly we need to find a cause and a cure for this disability.

My day started out good. Cole is always happy on Tuesdays- it's the day I come to MAC for our weekly family skills training session. I dropped Connor off at school and headed to MAC. Right before I got there, I listened to my voicemail and learned that our PCA was ill. With Pat traveling for work, I would have to pick up Cole from Grandma and Grandpa Schusted's house and take him to swim lessons. No big deal. I was actually looking forward to seeing Cole at his lessons, especially after hearing about the great progress he has made.

I got to Schusted's and Cole was ready to go. I managed to chat with Al and Eileen for a short while but had to cut it short as Cole wanted to leave. Cole insisted he didn't want to go to swim lessons. He wanted to go home and play. I really wanted to see Cole swim and at the advice of the therapist at MAC, I needed to follow through on this demand.

After a pit stop at McDonald's, Cole was willing to go to Foss. He was excited!! The lesson went awesome. Cole has improved SO MUCH since the last time I sat in on a lesson (we almost always have a PCA take him since Cole tends not to cooperate for us). I took some video of him swimming and simply was amazed at his progress.

After the lesson, Cole showered off and then we went in to change. He took off his suit and I started to dry him off. He was naked and tried to go outside the stall to dry his hair in the dryer. I had to physically stop him. He got mad and punched me. I immediately did the stand up, sit down technique. Thankfully, he let me help him with his clothes and then he dried his hair.

Upon arriving at home, Cole wanted to play outside. It was about 8:00, so the light of day was slipping by. Cole, Connor and I played outside for a short while. Cole got to use the tiller and he and Connor rode their scooters around the driveway. They even had time to play on the swing set. I had given the boys several reminders as to when it would be time to go inside.

Suddenly, as I was about to bring the boys inside, Cole said he wanted to ride his bike to see the neighbor's water fountain. The house is about 1/2 mile down the block. I told Cole it was getting dark and that we would go to the fountain on Wednesday. To say the least, it didn't go over well. Cole instantly went into fright or flight mode. To say this is a tantrum is an understatement.

This all happened so fast that it is hard for me to recall the exact details. All of the following things happened within a 15 minute time span, without stopping: Cole slammed his head into my Tahoe and dented it, he punched me several times, scratched me up and down my arms so hard that it drew blood, he slammed his head on the floor, attempted to hit Connor, punched me again, rammed his head against the floor, threw water all over the living room, slammed his door, screamed, jumped on furniture, kicked me, screamed more, punched more and then finally had no more energy. After each incident, I had to do a stand up, sit down (SU/SD). Right when I would finish one SU/SD, Cole would do something else to act out. I was alone and in pain, Connor was scared and Cole was out of control... all because I told him it was too dark to go to the fountain.

With all due respect, when parents of non-Autistic children complain about their child's tantrums, I cringe inside. I admit it, it's hard for me to feel sorry for them. Then again, it is all relative... they haven't walked in my shoes. It's no different than people who have it more difficult than I do.

People may wonder why we give in to Cole at times. The answer is in the story above. If we tell him no when he is absolutely set on something, this is often the reaction we get. It's difficult.

I'm up for this challenge. God gave Cole to Pat and I for a reason. The progress he makes is incredibly rewarding. But I have to admit that on nights like this, I am only human and I wonder how to handle it. Focus on the positive... that is the answer. It's my mantra.

Take a look at this video of Cole swimming tonight, I've watched it several times and it's helped to bring me lots of smiles.

Successful play date = 1 proud and happy mom!

2009-04-25T21:48:00.003-05:00

As most of you know, Cole spent last Saturday through Wednesday at the respite house. It was his fourth stay there and again it was a huge success. He had so much fun. They took him to all of his favorite spots: Rosedale, Borders, Target, McDonald's and Grand Slam. I laughed when they told me Cole requested to eat at a Chinese place at Rosedale. He ordered Wontons and soup! (even funnier when you consider Chinese is not a delicacy we enjoy at our house). Cole got to play outside a lot; probably more than he would if he were at home. They really do an outstanding job and we are so thankful.

I got to see him at my weekly training session at MAC on Tuesday. I was nervous as to how Cole would react, given he was staying at the respite house. Cole was SO happy to see me. He told me right away, "One more day at respite. Cole will come home on Wednesday!" He snuggled and hugged me a lot. Cole kept rubbing my neck and saying "Hi Mom". Oh how I missed my snuggle buddy. It's a good thing I only had to wait one more day to see him!

Pat, Connor and I took advantage of the respite time, as that is what it is for. We got to enjoy all of the simple things, like going to the YMCA together, dinner out at Beef O Brady's, practicing baseball in the back yard, a birthday party at Cooper's and other fun things. We also had the upstairs of our home painted while Cole was gone. This was a huge under-taking and we knew it was something we had to do while he was gone. Thankfully John, the wonderful painter, worked with our schedule and did an amazing job.

We were nervous about how Cole would react to a house that didn't look like he did when he left. The paint colors are drastically different from what they were before. When you add that to the new furniture and TV we just got, I just wasn't sure what kind of reaction Cole would give us. Thankfully, he walked in Wednesday and was very excited. He quickly walked around the house and looked in every room. He asked if his room was painted, and wasn't disappointed when we told him no. Cole really seemed to like the paint, especially the chocolate brown wall that he says looks like the color of our neighbor's tractor! The picture of Cole at the computer is him right after he got done checking out his new digs. You can tell from his gigantic smile that he was one happy fella.

We've had a good weekend so far. Tonight was fun. Pat went to hit some golf balls and I stayed home with the boys. We asked two neighborhood boys to play. It went so well. Cole and I rode our bikes on the trails in our yard and spent time together while the other kids played. Soon enough, Cole joined Connor, Matthew and Andrew on our swing set. The kids swung and played a tether ball type game together. They were laughing up a storm. Cole did a great job. He interacted just like any kid would and the boys included him in their play. I was so proud of Cole. He is learning how to play and more importantly, enjoying it! Soon enough, the boys moved on to the trampoline and Cole opted to shovel the dirt. All in all, it was a great play date. The kids even got to chase a wild turkey that walked into our backyard. The kids ran after it and the turkey got a running start and flew away! They thought it was so cool.

Right after the boys left, Cole insisted on putting his bike in the truck. He then wanted Connor's scooter in the truck as well. It was 8pm and time for bath, not the ideal time to drive to a park. Cole had it in his head that he wanted to "go to the park by the orange store and ride my bike". Hummm... just what park was he talking about? And how was I going to do this by myself, at 8pm at night without knowing where he wanted to go? Luckily Pat pulled in the driveway just as I was about to leave. Whew!

After a quick stop to get gas, Cole successful directed us to the park he was talking about. We have taken Cole to this small park that has a nice walking path around a big pond. This was the park he was talking about. I wish you could have seen how happy he was when we arrived and took his bike out of the truck. He was elated!!!! The boys were off to the races. Pat and I walked quickly, trying to keep up. Soon it became apparent that we needed to run. So off we went, running... me with my purse in hand and Pat in work boots. Cole and Connor would ride and scoot until they were just out of sight and then stop to wait for us. They both did awesome and it gave us an additional work out for the day! I took some great pictures of Pat and the boys at dusk while they were sitting on a bench but they were too blurry to post.

Now the boys are crashed and we are enjoying our newly painted home. It feels great. All of the wall cracks, nail pops and kid dings are fixed. The paint looks great and we are ready to relax. I'm going to finish my post and read the last book in the Twilight series. Enjoy the rest of your weekend everyone!

** Please say a prayer for my Grandma Irene, who is in the hospital with Bronchitis. She should be just fine, but with the vast number of prayers she says for us, I want to be sure we are doing the same for her. Love you GG.

My brave young man

2009-04-19T09:06:00.002-05:00

I hope you have all enjoyed the beautiful weather over the past week. Cole has been in heaven! To say he likes to ride his bike and scooter is an understatement. Each day this past week, he has stepped off the transportation van and ran to the garage for his bike. It has been so pleasant to spend time with Cole outside. He is so much more content and happy. The boys ride their bikes everywhere they can, even on the hill in our backyard. Cole especially likes this because he can go even faster on the hill! We've noticed that Cole exhibits fewer aggressive behaviors when he can play outside. That is a definite plus. Cole is such a good bike rider. He taught himself when he was three and he's been off to the races ever since.

I had a wonderful family training session with Cole at MAC this week. It was my third session with Cole and his lead therapist. It is amazing how well Cole behaves for me when he is there. I can easily get him to transition from activity to activity. I can also interrupt what he is doing and ask him to modify his task, without resistance. I've been interrupting his play activities and asking him to read books. He resists at first but then cooperates. His reading skills are really improving!!! Cole did a great job at telling me he wanted to go for a walk in the woods while I was there. MAC has beautiful grounds, full of trees and paths. The three of us had a fun time walking around, looking for deer and other animals. I had so much fun and I'm learning a lot about how we need to change things at home. We have no doubt that placing Cole at MAC was the right decision. He is making so much progress and he works so hard when he's there. We could not be any more proud of him.

One challenge that we have been dealing with is the clothing Cole wants to wear. All winter long, Cole would let me choose his shirts. He didn't seem to care or have a preference for specific clothing items. Not any more. His jeans need to be dark blue Gap jeans, with the slide clasp and without holes worn in the knees. Thank God I purchased several pair while they were on clearance last spring. T-shirts have become quite the issue of concern. Cole is only willing to wear two different shirts. If it were up to him, he would wear his red, "I'm that good" t-shirt every single day... and he tries to! I have to get his shirt wet before he gets up so he thinks I'm washing it. Most mornings, I have to show him six or seven different shirts before he'll finally give in and wear one that he didn't have in mind. And then he'll say "I'll wear the red shirt on Friday". He will sometimes try to sleep in the clothes he wore the night before. We'll get him out of the bath and put him in his PJs. A few minutes later, we'll hear him digging through his clothes bin to put on the red shirt. He's so smart!

Cole also doesn't like that I cut my long hair. Cole loves mommy's neck. Whenever I was around him, he asked me to put my hair in a rubber band so he could have access to my neck. A few weeks back, I got my hair cut above my shoulders and I no longer can pull it back. This hasn't gone over well with Cole. I've nearly lost my snuggle buddy. He asked me to get my old hair back. Thankfully I've managed to pin my hair back so he thinks it's pulled off my neck. At last, he's willing to snuggle again. It was quite the different reaction compared to Connor who graciously told me, "Mommy, your hair is SOOOO pretty!"

Cole went to the respite house for the fourth time yesterday. His sense of timing absolutely blew us away. Cole had gone to the respite house the past three times on a Wednesday. When he got back from the house in March he said, "Cole is all done at respite in March. Go to respite in April." I told him that next time he would go to the respite house on a Saturday. That was all I said about it, and that was a month ago.

Fast forward to last Sunday. Cole started talking about the respite house. He said he didn't want to go and he even looked at himself in the mirror and started to cry. "No respite on Saturday. Want to live at this house." We tried to re-direct his attention and not confirm what was going to happen. We could not believe that he knew it was time for respite and that he remembered about going on a Saturday. Throughout the week, Cole had anxiety about going to the house. Saturday came around and the plan was for his PCA, Tiffany, to hang out with Cole for a few hours and then drop him off at the house. I made a picture schedule for Cole which showed what was going to happen each day and when he would come home.

Cole was so excited to see Tiffany. He didn't want to wait, so I took him to Cub beforehand. I had the picture schedule in my front seat and he saw it. He asked to see it, so I gave it to him. I didn't know how he would react. I was nervous he would see what was going to happen and refuse to go with Tiffany. Instead, he read every part and concentrated really hard. He looked at me and happily said, "Tiffany will say Goodbye Cole!" He then started saying things like "Cole will come home on Wednesday. Kelly from respite will take me to swimming. I'll see Grandpa and Tiffany on Thursday." Cole was perfectly happy and content. I realized he just needed to know what was going to happen. I honestly think he was wondering if we were going to leave him there for good. Cole has had such positive experiences at the house so I should have known he didn't mind going. It was the fact that since he was now arriving on a Saturday, he didn't know when/if he would come home, etc. I should have made the schedule last week. Live and learn Mommy- next time I'll be prepared. Poor Cole... think of how scary that must have been for him. Not knowing what is going to happen and if or when you're coming home again. Here we were trying to avoid the subject and hopefully the anxiety, but instead our avoidance was making Cole's anxiety worse.

Tiffany called us at 5:01pm last night, one minute after she dropped Cole off. She said Cole walked right up to the house and went inside. He greeted the house staff and said "Goodbye Tiffany!". When I called last night, the staff member said Cole got to dig in the dirt with tractors and watch his favorite Wiggles movie. He was snuggled in his John Deere blanket and pillow, sleeping soundly.

We love you so much Cole and we miss you already. Enjoy your time at the respite house and thanks for being so brave.

Lots to catch up on....

2009-04-12T22:13:00.005-05:00

I want to start out my blog by sharing an experience of one of my Facebook friends. My "friend" Laura A. requested me to be her friend a few months back. I didn't recognize her name and as it turns out, I've never met Laura. She reached out to me saying her family was new to MN and she was trying to get connected to other parents of Autistic children. I accepted her request and I've gotten to know quite a bit about Laura and her son, Ben. Right away I admired how strong of an advocate Laura is on behalf of her son. She and her husband have tried countless interventions and therapies for their son. They moved to MN with hopes of receiving a higher level of care for him. The list goes on and on. I was excited to see one of her Facebook statuses a few months back, saying she was pregnant with their third child. About a month ago, they found out the baby was a boy, the third one for their family!

Last week, I read one of Laura's status updates. It read something very close to this, "Horrible news to report. An accident occurred which caused significant damage to my abdomen. Sadly, we lost baby Andrew immediately. He was due to arrive in August." Laura was 5 months pregnant.

I immediately sent Laura a message, offering my sympathy and concern for her. I had no idea what happened, nor did I feel it was my place to ask. A few days later, I got a personal message from Laura, explaining that she was changing Ben's diaper and for some reason, he went into fight mode. He kicked Laura in the belly so hard that the baby she was carrying was killed instantly. Laura expressed her sadness, but I need to share her comment regarding how she felt about Ben, her Autistic child. Laura insisted this horrific incident has only made her dedication to Autism Awareness that much stronger. She went on to say how she feels Drew will be Ben's angel in heaven, a special boy to watch over him. Her positive attitude, in this time of despair, was nothing short of remarkable.

I have been around Cole countless times when he is in what doctors call "fight or flight". The level of intensity of his aggression at these times is something beyond what should be physically possible for him. Doctors explain it as the same reaction you have if you were fighting for your life. With Autistic children, it is most often impossible to know what triggers this reaction. Very little can be done to avoid it, detect it, anticipate or discourage it.

My heart is so heavy for Laura, her family and Ben. Even when I hear the story and live with a person who has Autism, it is still nearly impossible for me to comprehend. Rest in peace Baby Andrew. We all know you will watch over your special brother.

Update on Cole...

I hope you all enjoyed the beautiful weather we've had over the past few days. We had a busy 3-4 days. Connor's family birthday party was this past Saturday. I had plans to do all of the party shopping and preparation on Friday. Unfortunately, I got the stomach flu late Thursday night. It came on really fast and furious. It knocked me out for 24 hours... all day Friday. I had to get up early on Saturday and do all of the running around, with nothing in me for energy and still not feeling more than 70%. As my mom says, "Moms aren't supposed to get sick!". Thankfully we had a PCA for Cole early on Saturday. Pat chipped in to help as much as possible and somehow we got it all done, with literally seconds to spare!

We were nervous as to how Cole would react to Connor's party. He had been saying, "No party for Connor. Just us today. No cake for Connor." If you read any of my past entries, then you know what happened a few weeks back when we tried to get Cole to go to his cousin's party. Thankfully, the weather was great and Cole did wonderful. He came home shortly before party started and actually seemed happy when he saw the balloons, etc. Cole played with his cousins at times and other times, he played in the front yard with Daddy and Uncle Tim. Cole was patient while Connor opened his presents and he even sang Happy Birthday. It truly was a great day. Connor had the best time and loved every minute of the day, up until 10pm when the last of his cousin's left the bonfire we had.

Easter went ok. Cole found his basket in the morning and didn't seem to interested in it. He was more concerned about riding his bike outside. He caught wind that we were going to Pat's parents for brunch and he resisted. Cole loves going there, but two gatherings in a row are very hard on him. He sat in our truck and grew very upset when we told him where we were going. Cole wanted to go to the mall, to the museum and many other places that weren't open today. We tried to explain it to him, but to no avail. He just didn't understand. I told Pat to go ahead with Connor and I would try my best to get Cole to his parents house.

Cole and I left home and found a Walgreen's that was open. We walked in and Cole asked if he could get a toy. We looked and he found a cool green remote control car. It made all kinds of neat sounds and was just the right price. With his attention diverted, I was able to get him to Pat's parents house and out of the truck without any trouble. Cole enjoyed sitting on their new outdoor swing. He played in the dirt with his cousins and ate some ham. And then he started asking to go home. Grandma Schusted had a wonderful Easter Egg Hunt planned for the boys. She had it organized so well. Each boy had their own basket full of goodies and 10 eggs to find. Each boy was assigned a color. Cole found a few eggs but it became very clear it was time to go. Pat stayed with Connor while I left with Cole.

We went to see my parents for a few short while. Cole got his first tractor ride of the year. Grandpa Denny said that Cole steered all the way to the duck pond! We visited for about an hour and then moved on. Again, Cole was ready to leave. I took Cole to the park where he did great. Shortly after we arrived, Cole looked at me and said, "I want to go pee in the woods". I looked around and saw a portable toilet. I showed it to Cole and told him he needed to use this bathroom. He said, "It won't flush. That's ok." I offered to help him, but he insisted on doing it all by himself. I never thought I would be proud of my son going potty in the porta-potty!!! I was so relieved he didn't "relieve" himself in the middle of the park... (it's the little things in life)!

We went home and spent time together taking bike rides and going to the park. Soon enough Daddy and Connor got home. The evening went well with the exception of a high level of anxiety about going to the respite house. We haven't talked about it but he knows it's coming. In the past, he's been excited to go. Now he is saying that he doesn't want to go to respite anymore. He's been looking at himself in the mirror, crying and saying, "no more respite". We'll see how Saturday goes. Keep your fingers and toes crossed for all of us.

And while you're at it, please say a prayer for Baby Andrew and his family. And share my blog with anyone you feel might benefit from gaining awareness about Autism and how profoundly it impacts the lives of those who live with it every day.

*Sorry about the duplicate pictures. I'm not sure why it uploaded the picture twice and I can't figure out how to take one down?!?!

Connor; pron (Con-ner); amazing, empathetic, smart, funny, caring, confident... simply the best!

2009-04-01T21:14:00.006-05:00

We knew there was something extra special about Connor from the moment he was placed in our arms. He has truly been the most pleasant little boy. So many people comment on how strong Connor's sense-of-self is and how friendly and happy he is. Connor will befriend anyone remotely near his size. He loves to make friends and play.

I remember a few years back, I took Connor to the Eagle's Nest indoor playground. Connor was having a fun time and I saw a young boy, about 10 years old, who appeared to have Autism. As a parent of a child with Autism, I can pick up on it very quickly. Most of the children in the play area avoided this young boy. They could tell something was off and simply didn't give him the time of day. Connor started talking to the boy and asked him to play. They crawled through the play set, climbed the rock wall and Connor let the boy hold his hand. It blew me away. Connor didn't give a rip that this young boy was different. He saws the boy for who he was, a happy young person who wanted a playmate. And Connor took him up on it. I was so proud of Connor quickly was reassured I had one amazing four-year-old for a son.

Connor does get frustrated with Cole's Autism. A few years ago, the boys loved playing Marble Works. It's a game where you build a contraption out of ramps, etc. and the marbles work their way down. We spent a lot of time building the ramps just the way the box displayed. Cole and Connor took turns putting the marbles down the tracks. A few minutes into this, Cole abruptly tore everything apart and threw the pieces all over the room. Connor was heart-broken. I'll never forget the words that came out of his mouth.. "Mommy, I don't like the days when Cole has Autism".

I could write a book about all of the concessions Connor has to make: wearing certain clothes, getting off the computer when he just sat down, ending playdates early, leaving parties, taking rides in the truck when we are at our witts end, playing outside when he it is 7 degrees and sleeting, and so on. We all make concessions in our lives, but Connor makes them at a pace of 100 to our 1. I think it's healthy to make kids compromise and share. Connor has to do it as a way of life. There is not one hour that passes at our household when Connor is not asked to make a concession of some degree. We try very hard to reason with Cole, but his brain is not wired to comprehend it. The result often ends up with us dropping what we're doing so Cole does not have a fit. It's not fair, but many times it is life.

Despite all of the turmoil that comes with having an Autistic brother, Connor takes it all in stride, and then some. Never once in his life has he ever said anything mean about Cole. At his tender age, he can sense when he needs to step up and play the big brother to Cole. It's evident he watches Pat and I closely to learn how we deal with Cole. Sometimes I think Connor does a better job with Cole then we do. Cole ADORES Connor. When Connor asks something of Cole, the success rate must be at least 90%. I wish there could have been a video camera in our home last night. Cole was having a good evening. We were into our nightly routine and things were going well. For some reason, Connor took it upon himself to "care" for Cole. He sat on the toilet while Cole was in the tub. I was in our bedroom and took every chance I could to peek in and listen. Again, I was blown away. Connor used his gentle, sensitive tone of voice and kindly asked Cole to stop splashing. And Cole stopped. He then asked, "Cole, do you want Connor to help you wash your body, buddy?" Cole stood up and excitedly said, "YES!". Connor grabbed the soap and proceed to help Cole wash himself. Typically this is a challenge. Cole would much rather play then get his hair and body washed. He then kept reinforcing Cole's good behavior by constantly saying things like, "Great job in the tub Cole. Way to listen!! You're doing a good job tonight Cole. I like the picture you drew Cole- great job!" This went on all night and I'm not exaggerating, nor did I ask one thing of Connor. He did this all on his own.

I took Connor's face in my hands, gave him tons of kisses and told him many times how proud I was of him and that he was by far, the BEST brother in the world. I wish I could put this into words. There are so many example I would love to share with you. Connor deserves the recognition. I don't know what we would do without Connor in our lives. He is my therapy. I have no doubt that he was hand-picked for our family. I'm fully convinced there is not one other 5-3/4 year old who could live in Connor's shoes and do it with such pride, confidence and happiness. He teaches me so much about life and about myself. Pat and I are constantly looking at each other with a "can you believe him" expression. The joy and positive attitude he brings to our family often keeps us going. He's our little rock star, in more than one sense of the word.

If you have heard the expression, 'pay it forward', I know Connor's life will be filled with countless blessings. Even though it's the last thing he would expect in return.

Not the "present" we intended to give

2009-03-30T08:14:00.003-05:00

After years of struggling with family birthday parties, Cole had made some great progress in the past year or so. He seemed to tolerate going to parties and everything that goes along with them.

We got an invitation to his cousin, Max's, party a few weeks ago. Cole usually loves their house. They have a great backyard with lots of room to run around. And they have lots of cool toys in the basement. Max's party was last Friday night. Cole had therapy until 5pm, so we had him transported right to Max's house. I sent a detailed picture schedule with him to therapy that day, which showed everything that would happen. I emphasized there would be no dog at their house. Last time we were there, they were dog-sitting and Cole was petrified. The staff at MAC took Cole through the schedule several times throughout the day.

Shortly after 6pm, Cole arrived. He walked up to the house, but refused to come in. He said he wanted to go home with Pat, Connor and I. We all took turns trying to gently persuade him to come inside. He was fighting back tears and filling with anxiety. A few minutes later, Cole came inside and I was able to give him a piece of cheese. He still was insisting on going home. And then he smacked me. He hit me three times and he got three stand up, sit downs. Cole cooperated, but started to cry and then crumbled up the cheese in his hands. It went all over the floor. As I was leaning over to pick up the cheese, Cole kicked their wall and put a hole right in the sheetrock. We grabbed Cole and instantly had to leave. Luckily Connor was able to stay for the party. Pat's parents volunteered to bring him home afterward.

We could not believe Cole kicked their wall. Even though he does this stuff at home, in eight years he has never exhibited this behavior at someone else's home. We were sad, devastated and embarrassed. This happened in front of everyone. Usually we're able to calm Cole and get him to stay at a party or event. Not this time, and with terrible consequences. I could not help but break down. Sometimes life with Autism is too hard, and too unfair.

Once we got Cole home he was perfectly fine. He played on the computer, ate dinner and drew pictures on his white board. For Pat and I, it was a depressing night. One that was hard to bounce back from. Times like this have a way of taking the wind from your sails.

The rest of the weekend went well. Cole had a fun Saturday with his PCA and then he spent the night at Grandma and Grandpa Cooney's house. He and Connor had a great time and they got a surprise visit from Tara and her family. Elle even ended up spending the night, too! Pat and I got a chance to look for new furniture and enjoy dinner together. We both got a full night of sleep and that was wonderful!

We spent Sunday raking leaves and playing in the yard. Cole loved playing with his new John Deere wheel barrow. He went on bike rides with Pat and we built a bonfire. Cole also amazed us with his drawing capabilities. He loves to draw on his white board and his pictures are getting much for detailed. The one I'm showing here is Pat driving his boat. Cole wrote Dad and Minnesota all by himself. He also illustrated fish and turtles in the water, along with the boat motor and lines to show the boat moving fast. Connor also worked on his art project for the Riverview School Art Fair. He did an amazing job!

Saturday was the two month anniversary of Cole wearing underwear! Way to go Cole, we are so proud of you.

3 guys at Rosedale?!?!

2009-03-22T16:21:00.007-05:00

We've had a good week and a pretty good weekend. Cole got home on Saturday afternoon, following a successful and fun stay at the respite house. He was so excited when I picked him up and he talked up a storm on the way home. He told me how he went to the mall with his red t-shirt on and how he likes to swing "quickly". We arrived home to a yard full of boys, five to be exact. Connor enjoyed having the neighborhood boys over one of spring's beautiful days. The kids were having fun playing with our toys, jumping on the trampoline and trading Pokeman cards in the sun. Cole got home and jumped right in! He greeted the boys and chose to play with them at times. Better yet, he didn't get upset and want Connor all to himself.... this has been a big struggle in years past. It was a fun day. Pat even got his new fish finder installed on the boat!! It was funny, Cole kept saying.... "Daddy's giving the boat a tune-up!"

Cole slept pretty well, only getting up once. We are hoping the new medication is helping but the verdict is still out. Shannon was up with Cole four times one night this past week.

We were outside early today. Cole got Connor to come outside, even though Connor was running a low temp. Cole doesn't understand when Connor doesn't feel well. Taking no for an answer is not in the cards, especially since he hasn't seen much of his best buddy in the past week. There was play time to make up for. So we headed outside and played. Cole LOVES to be outside. His favorite thing right now is to play in the dirt, which is no longer frozen he tells us. He also loves to push the endless stream of water that runs along the curb in front of our house. He uses the squeegee to push it fast and make big waves and splashes. Oh what fun!! He even got to help Daddy gas up the tractor and start it up for the first time this year. This lasted until about 3pm, when the witching hour set in. This usually happens on weekend days when we don't have a PCA to work with Cole. I think he gets a little stir crazy after 8-10 hours at home, no matter how busy he's been all day.

We had plans today to drop off the boys at my parent's house, so Pat and I could go to our Godchild's All-Star hockey game. I kept telling Cole that in a little while, we would go bye-bye and then to Grandpa's house. For those of you who don't know, Cole loves his grandparent's houses. Typically he'll go there without any resistance. Today was different. Cole wanted to go to Southdale instead. We tried for over an hour to try to convince him to do other things and then go to Grandpa's. It didn't work, no matter how enticing we thought our offers were. Cole wanted Pat (and only Pat) to take him and Connor to Rosedale. Mom wasn't allowed. So Pat graciously took the boys to Rosedale while I went to Breyden's hockey game. Pat tells me the trip to Rosedale went well. They rode the elevator several times and took three trips to the book store. Cole came home in a much better mood and now we're almost through the rough part of the day.

I had a fun time at Brey's hockey game. It was fun to see him skate. I can still remember the day he was born. To see him skating aggressively and understanding the game of hockey is amazing. Pat would have been proud of him.

It was also a little hard to be at the game. I couldn't help but notice all of the "normal" families. Parents with their children, kids running around the arena with toys and treats. The kids who formed a hockey cheer gang of sorts. Parents chatting with one another and cheering on their loved ones. It saddened me to know this might never be possible for our family. Right now we have to sneak out of the house to get Connor to gymnastics each week and we already have a PCA hired for the Friday nights he'll be playing baseball this spring. What is going to happen when Connor's extra-curricular activities become more demanding of our time and energy? I just don't know how we'll handle it with Cole. I am hoping Cole will make enough progress to go to Connor's games, etc. but I have to be realistic. It might not be in the cards for us, and that is hard... really hard. Again, it's the little things that people may take for granted. Playing sports, going to birthday parties and other fun activities are not things every family has the privilege of doing. Cherish those times with your children and cheer them on with pride and appreciation.

That said, we did sign Cole up for his second season of Miracle League baseball. We are lucky to have this league in Blaine. The league is for children of all disabilities and the field is designed to accommodate our kids. Cole played last year and seemed to enjoy it. He has been talking about it this year already. Although he has plans for Connor to be his baseball buddy, instead of a PCA. We'll have to see how it goes. I think Connor might be one heck of a helper!

*Cole just read 100 sight word flash cards like they were old news. And it was the first time I had shown them to him. :-) WAY TO GO COLE, you're a smart young man.

I'll take a super-size order of sleep please.

2009-03-13T17:13:00.004-05:00

There have been quite a few yawns at the Schusted household this past week. For some reason, Cole's sleep habits are on a rapid decline. We've been fighting the sleep battle for quite some time, but it's now getting to the point where it's out of hand.

We used to have a problem getting Cole to sleep. It was not unusual for us to have a two hour ordeal just to get him to stay in his bedroom and fall asleep for the night. We endured that for several months before trying Melatonin. Melatonin is a natural sleep aid that our doctor recommended to us. It has been a miracle worker for us. We grind up the pill each night, put it inside a Mint Oreo cookie and a half hour later, Cole is laying in bed and out for the count.

The down side of Melatonin is that it will get Cole to sleep but it doesn't keep him asleep. For the past 4-6 months, Cole has been getting up multiple times during the night. Usually he wants us to change the movie in his DVD player. I should back up here. Cole needs to have a movie playing in order to sleep. We were desperate prior to Melatonin and one night offered him a movie to fall asleep. Cole called this 'movie rest'. It took one night and now Cole needs his movie rest every night, all night long. This is one of the tough things about Autism... you do something one time and there is no breaking away from it. Believe me, if we could, we would.

The past month or so, Cole has literally been getting up 6-12 times per night. Pat and I 'graciously' take turns changing Cole's movie, getting his juice, etc. We are lucky that he usually rolls over and falls right back to sleep. Only a few times has he turned on our light and said "Good Morning Mommy" when it's 1:18am. Regardless of what Cole needs or does when he wakes up at night, Pat and I are not sleeping. We are exhausted and frustrated. It's getting harder and harder to function.

This past Monday topped the cake. Cole went to bed well and we soon followed. It didn't last long. Cole was up for the "day" at 11:30pm... yes 11:30pm. We could not get him back to sleep no matter how hard we tried. We took turns changing movies, snuggling, turning off his light, asking him to stop kicking the wall, etc. It was nearly impossible to remain calm and patient. And it lasted until 5:45am. Pat had to work the next day and I was volunteering at Connor's school all day. Cole himself had a full day of therapy. I couldn't believe this was happening. Cole finally fell asleep around 5:45, but I had to get him up for the day at 7am. He cooperated and went on Care Cab. His therapists said he had a good day, I'm not sure how. I felt and looked like a walking zombie.

I called Cole's Autism doctor right away in the morning. We finally connected on Tuesday. He agreed to give us a prescription medication that should help Cole stay asleep. The good thing is we can crush this medication into the Melatonin pill, so Cole should take it with ease. He has taken it for two nights now. The medication takes a little time to actually work so the verdict is still out. The past two nights have gone better. It's amazing how getting up only 2-4 times a night is a good night's sleep! Lets hope the new medication does what it's supposed to, with no negative sided affects.

On a positive note, Cole has made us smile so much this week. Here are just a few things that we cherished from this past week:

-COLE WILL CELEBRATE HIS SIX WEEK ANNIVERSARY OF WEARING UNDIES ON SATURDAY!!! Way to go Cole!!!

-His Youtube.com typing skills continue to improve. Just tonight he typed in "roller coaster big hill", without any assistance!!

- He also knows how to work Skype better than we do. Thank God or we would not be able to successfully Skype with Katie in the Netherlands!!

-Cole has had so much fun listening to music with his rocker brother, Connor. Connor taught Cole how to count into a song (1,2,3,4) before it starts, and to play the air drums.

- I checked on Cole while he was going poop in the potty. I came in to make sure he flushed, etc. He said to me, "Uh oh, toilet is BIG. Toilet is BIG." I looked and he had clogged the toilet (Pat would be proud!). I laughed and told him, "That's ok Cole, Mommy will fix it!"

- We've been reading his daily progress reports from MAC Therapy. Cole is making huge strides at MAC. We are so proud of him and can't wait for his progress meeting in a month or so.

- Cole has a date with his PCA, Alli, on Saturday. He only gets to see her once a month and he is beyond excited. He has grand plans for the day. He knew he would see Alli in March. He has asked me every day since March 1st, "Cole see Alli today?!"

- Cole has been asking for Heath to pick him up from MAC. Heath is a worker from Cole's respite house. I was happy to hear this, it tells me Cole is likes his respite house and is looking forward to his stay there next week!

-Cole sat on the couch tonight and snuggled me for about 15 minutes- there is nothing better than that!

-We had a successful family night at Chuck E Cheese last weekend. Cole did so great. He chose his own games and put the tokens in himself. He was so well-behaved and easy to keep track of. That is huge progress for us. 18 months ago, we swore we would never go there again. We also took him to the fireplace store (with the help of my mom). We were able to be in the store for nearly an hour!!!

As you can see, we truly cherish the little things with Cole. He brings such a beautiful perspective to life and we acknowledge and appreciate all of his accomplishments, both big and small. Thanks for being you Cole, you make my heart fill with immense joy and pride. I love you to the moon and back (and then some).

Long entry, but a very good dose of what life is like with an Autistic child

2009-03-06T16:17:00.007-06:00

Much has happened in the past week. Cole turned 8 years old on Saturday! He thoroughly enjoyed his birthday party on Sunday. He did awesome. He read some his cards and had such good manners when he opened his gifts. It was a nice way to end a tough weekend. We got back from vacation late Thursday night but we didn't get to see Cole until after therapy on Friday. Cole was pretty good that night, but Saturday was tough. Cole was both testing us and letting us know he didn't like us being away from him for 7 days. The party on Sunday was a nice way to "get through" a tough couple of days.

And then came Tuesday....

On Tuesday I had to take Cole to the doctor for his check up and pre-op appointment. Cole has an extreme fear of the dentist and after our last attempt, the dentist advised us to put him under general anesthesia so we could get Cole the dental care he needs. So on Tuesday morning, we headed down to Cole's doctor. The plan was to go to the appointment, head back to Grandpa's, visit for a few minutes and then have Care Cab take Cole to MAC for therapy. The doctor appointment went really well. They got everything done except the vision and hearing test. Dr Sakkal greeted us with hugs and was so impressed with Cole's progress.

I knew the change in routine would be hard for Cole. I prepared a visual schedule of what he should expect on Tuesday. I showed it to him several times, we read it out loud and I verbally kept reminding him of the day's plans.

After we left the doctor, we were headed to my parent's house and Cole saw the Care Cab van waiting down the block. Instantly he threw a fit, "No Care Cab today. No MAC. Want to see Grandpa. Want to stay home. NO MAC TODAY!!!". I asked Cole if he wanted Mommy to take him to MAC. He replied, "Yes, mommy take you to MAC". So I pulled up along side Care Cab, explained the situation and proceeded to turn around. I knew I could not let him go into my parent's house, for fear he would not leave to go to therapy, so I kept driving. When Cole realized I was going to take him to MAC, he flipped out in the car. He was screaming and kicking, crying and yelling.... for 20 minutes.

I called his therapist to warn her that we would have a challenge on our hands. Her response was, "We need to follow through on this demand. We will get him inside." Cole calmed down a little in the truck, but when we got close to MAC, he became very filled with anxiety.... I mean VERY filled.

I pulled into the parking lot and Cole unbuckled himself and hopped out of his seat. He is good at this and will move around different spots in the truck so you can't reach him. His therapist came out to help. Cole was crying and yelling. He did NOT want to go inside. I tried for a minute to get him out of the truck. Cole then became aggressive.

We are implementing a behavior technique with Cole whenever he gets aggressive. We have big problems at home with Cole's aggression. For about 3-4 weeks, we have been implementing the Stand Up, Sit Down technique (SU/SD). The technique is this: when Cole is aggressive to himself, others or property, we immediately tell him to stand up. He then needs to stop and stand up. Then we tell him to sit down. He then needs to sit down. We keep repeating this until Cole does one quiet stand up and sit down in a row, without touching anything. Until Tuesday, the longest it's taken for Cole to complete this has been 45 seconds. Furthermore, the aggression has gone way down. I can't remember the last time he hit Connor. :-)

Now back to the truck... Cole got aggressive, so I immediately did the SU/SD. After about three minutes, we were able to corner him in the truck and physically remove him. Once he got out of the truck, I continued with the SU/SD while the therapist ran around and shut the truck doors. Cole was incredibly worked up. He kept getting aggressive during the technique and could not complete the SU/SD in the manner described above. So I had to keep going. This went on for at least 15 minutes... outside, in 20 degree weather, on the pavement. Finally Cole cooperated and did one SU/SD quietly. I then told him "Time to go inside Cole" and started to walk up the entry. Cole ran to my truck, which was thankfully locked. He then followed me, still crying and saying he wanted to go home.

Once we got inside, I told Cole he needed to put his jacket in his locker. He hit me. So again, we did the SU/SD. This went on for another 7-10 minutes. Cole finally cooperated and we were able to get his coat off. At that point, the therapist said I should go. I said goodbye to Cole and walked out.

I wish I could express how extremely difficult this was for me. It instantly brought me to tears. I have no problem implementing the SU/SD technique. In fact, I've been very pleased with the results and I love how neutral the technique is. It is very hard to see Cole so sad, wanting to be with me and me not able to console him or give in. My maternal instincts wanted to cuddle him, turn the car around and spend the day with him. I didn't want him to think I didn't love him. It's so difficult to discipline and teach a child who has the capacity to reason and understand.

Five minutes after I left MAC, Cole's therapist called me to tell me I did an outstanding job. She also said I would not believe it if I saw Cole now. She said he immediately calmed down, turned the corner and went into therapy like it was any other day. The therapist said it was critical for me to follow through like I did. It is clear that Cole was trying to manipulate me. Even though his intentions were pure, he needs to know that Mom and Dad know what's best and he needs to abide by that. It was so hard and something I hope I never have to do again.

It sure was wonderful to hear Cole say, "Hi Mom!!" and give me hugs and kisses when he saw me after therapy. He still loved me. :-)

And then came Thursday.....

Thursday was the day of "surgery". Cole could not have anything to eat after midnight. Of coarse, he woke up for the day at 5:30am and went to the kitchen requesting Spaghettio's and tuna. I quickly diverted him onto the computer and put the plastic locks on all of the cupboards.

We got to Children's West and Cole was excited to see a new doctor. He didn't know it was for a dental procedure. If he did, there is no way he would get out of the car. The staff was so friendly, flexible and well prepared. The facility was well equipped for children. Cole had a great time playing while we talked with the doctors, etc. We tried to get Cole to take a small dose of medicine that would make him calm. He took an itty bitty sip and said now way. So we played until it was Cole's turn. We went into the induction room and right when Cole saw it, he froze and instantly resisted. He cried and wanted to go home. He put his legs on the door frame to prevent himself from going in. We had to overpower him and force him into the room. Pat sat on a chair with him and the two doctors quickly put the mask on Cole's nose and mouth. He fought it so hard... crying and squirming. It was so painful to watch. I could barely look. It took about 20 seconds and slowly he went to sleep. It seemed like it took forever. There is something about seeing your child in that state that fills you with udder sadness. It took me several minutes to compose myself, after they assured me he was breathing at 100% capacity and doing great.

The staff let me clip Cole's toe nails. It was so great! For those of you who don't know, toe nail clipping is about as traumatic for Cole as the dentist. To do it while he was sleeping was a dream. His toes came out looking like he spent the day at the spa!

We then waited in the family area. After about 1-1/2 hours, the dentist came out to say Cole did very well and that he was headed to recovery soon. Cole did have a few cavities, but all-in-all, the dentist said he was expecting it to be worse. I'm just relieved he got a thorough cleaning, sealants and the necessary repairs. The dentist took so much time talking with us. He is truly unique. He has been working with special needs children for 39 years. He told us he understands what we go through each day and called us both angels.

Soon enough it was time to see Cole. They kindly took out all of the IVs before he woke up. We were in the room with him when he woke up. It was so nice to be there. He was out of it for a while and said his tummy and mouth hurt. He kept saying, "my mouth is sick" and he was picking at his teeth. I'm sure they were sore, despite the medication. He woke up asking for McDonald's- in true Cole fashion! He was emotional in the car on the way home but by 1:30- he was playing with Connor and was back to his perky self.

And then there was Thursday night....

To top off the week, Cole decided to get up at least once an hour last night. I'm not exaggerating when I say we got up with him at least 10 times from 11p - 7a. It was a rough night. The Melatonin works to get Cole to sleep but unfortunately it does not keep him asleep. A good night with Cole is him sleeping, uninterrupted until 3am, it is no different than having a baby... sometimes it's worse.

Some weeks are like this. We grow in times of challenge, I know I have this week. And please know the week wasn't all difficult. One highlight was Cole's response to Connor giving him a cookie. Cole looked at Connor and said, "Thank you, enjoy your ride!" I laughed hysterically thinking Cole must really enjoy the numerous trips to Nickelodeon Universe!

Have a great weekend everyone. Sorry for the long entry and numerous pics!

*Isn't the birthday picture cute- look at that handsome boy.

Te amo Mexico

2009-02-27T21:22:00.004-06:00

* Sorry about the duplicate fish picture. I couldn't figure out how to delete one of them!

We are back and well rested after an amazing seven-day vacation in Ixtapa, Mexico!! We flew back on Thursday night, into a terrible snow storm. I have to say, Northwest came through for us and we landed only five minutes behind schedule. If it weren't for our two darling little boys waiting for us in Minnesota, we could have easily stayed in Ixtapa another day (or two... or three)!!

First of all I have to thank our gracious families who took care of our boys while we were vacationing. It goes without saying, we could never leave without their assistance and for that, we are deeply grateful. Nearly everyone in the family had one or both of the boys at some point. We were thoroughly relaxed and confident, knowing they were in the best of care.

Pat and I have been blessed to go to Ixtapa for the past five years. We absolutely love Ixtapa and cherish the time we spend there. We really know the area well- the good restaurants, the waiters who greet us with high fives and the best local fishermen. The weather is always outstanding. We have been there for a total of 35 days and never once has it been under 87 degrees with full sun. The last morning we were there, we woke up to a partly cloudy sky, but the intense sun burned them off by 9:30am. No doubt, it's a slice of heaven here on earth.

We were fortunate to spend a few days there with Shannon's parents. We enjoyed great conversation, many fantastic meals and lots of sunshine. Pat and Denny got out fishing on Sunday. Denny caught an eight foot sailfish and Pat caught a 54" Mahi Mahi (Dorado). Mom and I rushed down to the fishing pier to see it in person. That night, we brought the Mahi Mahi filet into Ixtapa where a local restaurant prepared it for us! That day was a highlight of our trip!

We left on Thursday the 19th. Cole went to the respite house, for the second time, on Wednesday the 18th. I was so nervous on how it would go. In true Cole fashion, he handled it like a champ. In fact, on the Monday prior, he asked his PCA, Haley, if she would take him to see "Erin, Laura and Jeff". It worked out great when Haley responded, "Not today, but how about Wednesday?!". Cole ended up going to the house without any resistance. He was cheerful, happy and such a trooper. He knew all of the staff by name and made himself right at home. When I called Wednesday night, to hear this report was music to my ears. I knew it would go well. And it did.

Cole was at the respite house until Saturday afternoon. He got the ride of his life when Brendan and his girlfriend, Brittany, picked him up in her car. Cole has a big crush on Brittany and to ride in her car was better than a John Deere tractor ride. He spent time at Brendan's house and then went to Tara and Jason's for a pizza party. The plan was for Cole to spend the night at Tara's house, where Connor was staying. Cole changed the plan. He wanted to spend the night at Uncle Brendan's, with Connor. So Brendan and Brittany brought the boys back to his house and played with them, fed them ice cream and tucked them into the air mattress. The boys slept through the night and enjoyed homemade pancakes in the morning. I would say the slumber party was a huge success! :-)

Brendan wrote me an email saying how impressed he was with Cole's speech and behavior. He noticed progress even in the short time since he had seen him last. He also gave Connor a huge compliment. He said that whenever Cole mentioned mom and dad, Connor stayed right by Cole and comforted him by saying, "It's alright Cole. Connor's here and mommy and daddy will be home soon. It's ok buddy." Did I mention that Connor is by far the best brother on this planet? Yes, there is no doubt. Our blessings with him are countless.

On Sunday the boys went to Pat's parents. The day went well. Cole entertained himself on the computer and I believe he got to Skype with his Auntie Katie, who is studying abroad in the Netherlands. Wait until this Sunday when he gets to Skype with her at home! :-) We miss you Katie and think of you so often.

Monday brought Cole back to his regular routine. He went to speech and MAC. That night he played at the Schusted's with Connor. Tuesday, he went to MAC and was brought to the Cooney's house. It was a night filled with excitement, as they just flew in from Ixtapa.

Connor came with Grandma Cooney to pick us up at the airport last night. We were thankful to land on time, despite mounds of snow and whipping winds. We decided to leave Cole with Grandpa for the night. We wanted to make sure Cole got a good night's sleep and that he would be willing to go to MAC for therapy this morning. It was hard not to see him right when we got home, but it was the right decision for all of us.

Today Connor and I spent the day snuggling a ton and catching up. We also shopped for Cole's birthday (he turns 8 on Saturday!). We then went down to MAC to surprise Cole. Typically he is transported home after MAC on Fridays. I couldn't wait any longer to see him, so we went to pick him up ourselves. Cole was THRILLED to see us. I just kissed him and smiled at how long his hair had gotten. He was so happy to have mommy pick him up. We came home and enjoyed pizza with Daddy, Connor, Tara, Elle and Ethan. Then the boys headed outside to shovel and plow snow. It was a great night. Cole impressed us with his ability to type so many things into his You Tube video search: dark green fast boat, John Deere tiller, Wiggles bid red car... you name it. He is just so dang smart. And I just love him to pieces.

Thank you again to all of those who helped take care of the boys. We appreciate it more than you know and we are so thankful for your generous offers to help.

Brotherly love

2009-02-14T21:51:00.002-06:00

Today I found out just how much Cole adores his brother. They share a bond that is so strong. I have no doubt they were hand picked for one another. Connor is by far Cole's best friend in the world. If it were up to Cole, he would spend every waking spare moment with Connor.

From the moment Cole gets up in the morning, which is always way before Connor, he wants to wake up Connor. He wants to know what he's doing, where he is and just loves to be around him. Most of the time, it is something we treasure. On the other end of the spectrum, it can make it very hard to function, especially on Saturdays. Every Saturday, Connor has gymnastics from 11-1. Each Saturday morning Connor and I go to the YMCA and then I take him to gymnastics. Every week Cole is sad and anxiety-filled when we go to leave. Lately we've been propping the door open, leaving the garage door up and preparing for our "escape". Pat plays with Cole in a far corner of our house. Connor and I quickly run out of the house and zoom away in the truck. Pat is unfortunately left to deal with Cole's frustration and anger when he realizes his mommy and best buddy have left him.

Today was no exception. Connor and I got ready on the sly and ran out of the house when the coast was clear. Cole had been asking all morning to go to the mall, to the zoo, Children's Museum and Chuck E Cheese. He had grand plans for us today. He didn't care if I wanted to work out or if Connor had gymnastics. To top it off, Connor and I had plans to go to the Children's Theater after gymnastics. It was going to be at least 4pm before Cole would get reunited with his buddy.

I called Pat after we left to see how Cole was doing. It wasn't good. Cole was very sad and upset. Each time I called, he was watching out the window, waiting for Connor and I to get home. After I dropped off Connor, I came home to spend time with Cole before the play. He seemed to calm down and we promised to take him to the Mall of America later on. Thankfully Cole calmed down and Pat was able to spend a few nice hours with him in the afternoon. They played outside and made eggs.... Cole's favorite! After the play, Pat and Cole left to meet us at the Mall of America. Cole was SO excited!!

We got to the mall and it was crazy, insane busy. I've been to the mall a lot and I've never seen it like this. Pat called my cell and said it took him 15 minutes to find a place to park. When Connor and I saw the mobs of people inside, I was filled with anxiety and questioning how we were going to keep Cole safe. We couldn't turn back now.

Finally we all met up. Cole was so excited to see us. He did a great job. He held hands with Connor the whole time. They waited in line and Cole was so patient. Instead of getting frustrated, Cole talked about the kids that were screaming on the rides, he told me about the guy at the ride who talks into the microphone and he took it upon himself to love up on Connor. It was precious. He even waved to Pat and I and said, "Hi mommy" when he was riding the truck ride....oh how rewarding progress is!! :-)

I was so relieved to see how well Cole did. It helped that he has taken countless trips to the MOA with his PCAs. I know the previous trips made ours a success. We have wonderful people who work with Cole and they have done an amazing job at developing his community and life skills. We are incredibly thankful for each of them. I felt Cole was pretty much indistinguishable amongst the other kids today. He fit right in and was as excited and happy as the next child. He stopped when we said his name and he was so patient and well behaved. We were so proud of him.

I had a wonderful Valentine's Day. My three boys each gave me cards and a dozen roses. I loved all of those things, but the best part was spending the day with the three men I love most in this world.

My heart belongs to my boys

2009-02-11T22:41:00.002-06:00

I have three of the most amazing boys in my life... Pat, Cole and Connor. I've been incredibly blessed to have Pat in my life for over twenty years. We have countless memories together and we thoroughly enjoyed making new memories with our little fellas. Autism has thrown a curve ball at us but we try very hard to make the most of it. Outings take a lot more planning and sometimes there are things we simply can't do.

We were fortunate to enjoy the Ham Lake Snow Bowl last Saturday. It was a rather warm winter day. We bundled the kids up and headed to the lake near our house. We had a fun time and the kids did great! We saw a ton of dogs. Cole is deathly afraid of dogs but he was so brave. He kept saying, "Dogs are on a leash, not going to get you". We got to walk out onto the lake where we take the boat in the summer. Cole loved that part, he even laid down on the ice just to take it all in. He got a kick out the trees that were on the lake (for ice golfing) and he loved seeing snowmobiles and 4-wheelers tooling around the lake. Soon enough, it was time for a unique kind of sled dog race. There were nearly 100 dogs in a race where they pull their owners on cross country skis. We watched the dogs race down the path, one after another. There were all kinds of dogs and it was so neat to see. Cole and Connor got a chance to jump and play in the snow together. I took a lot of pictures and we had a great morning together.

I was so happy to do this activity as a family. Not long ago, this is something we would not attempt. Slowly, Cole is becoming more adaptable and cooperative when we go out in public. It wasn't stressful for us and we all had a wonderful time together.

On Sunday, we had plans to spend the afternoon at my sister's house to celebrate my birthday. We prepped Cole for this and thought he would cooperate. For some reason, he had anxiety about it all day long. The time came for us to leave and Cole refused to go. He cried and cried, and got many stand up, sit downs (I'll explain those in a later entry). We offered to have everyone come here and he kept saying, "Just us. No everyone today. Want to go swimming at the Y". So a half hour after we were supposed to be at my sister's, Connor and I ran out of the house and sped out of the garage before Cole could get outside to stop us.

I called Pat every twenty minutes or so to see if he thought they would make it. It was always the same response. Cole was still upset and refused to come. So Pat and Cole missed my birthday celebration. It was one of those times that just wasn't meant to be, and that's ok.

So we got home around 7pm and Cole was waiting for me at the door. I walked in and he said, "Hi Mommy!!! Go to Y? Go swimming with Mommy and Connor." So at 7:15pm on a Sunday night, we all packed up our things and drove down to the Y by my parents (the one close to our house is too loud for Cole). We had a fun time at the pool and it was rewarding to see the progress Cole has made with his swimming. It sure wasn't the way most families spend 7:30-9pm on a school night, but it was worth it.

Cole had a good day at MAC the next day and was glad to get back into his routine. I opened up his backpack that night and he made me a homemade Valentine. It was written in his handwriting and is just so precious. Cole loves us so much. He tells us every day and he shows us every day. Tonight, after Cole got Connor's "movie rest" set up, I asked him to give Connor a kiss goodnight. Cole leaned over and gave Connor a big kiss and said, "I love you Connor. I love you Connor." He does love us, there is no doubt in my mind.

I might be buying 10 pairs of Harley undies

2009-02-06T11:00:00.003-06:00

Quick entry today... I have the day to myself and I desperately need to take advantage of it. We've had a dumpster in our driveway for nearly a month. We got it when we put in the hardwood floors and I kept it with intentions of going through nearly every room in our house to donate and throw away all of the excess c#@p we've collected over the past 12 years. It's top priority on the to do list today.

I wanted to give a quick update on the undies situation. If you read my last blog entry, you know that on last Saturday, Cole decided he wanted to wear undies to bed like Connor. He wore them Saturday night and I'm ELATED to report that he has worn undies every minute since then!!!! He has let us change his underwear each day and makes requests on whether he wants the John Deere or Harley Davidson undies. So far, the Harley ones are winning. In fact, I'm heading to the HD store today to see if I can buy 3-4 more packages! Cole specifically likes the ones with flames on them. You go Cole.

I don't think it's possible to express how relieved and proud I am. We have been working on potty training and underwear for years. I've read books, received professional help, made picture schedules, and nothing was working for Cole. Maybe it just had to be his idea? Either way, I'm cautiously optimistic that Cole will stay in his undies. They have to be a million times more comfortable than the size 4T Pull Ups he had been wearing.

I thought I would also share a picture of his new room. The flooring turned out beautiful and Cole loves his new tractor wall decorations, bedding and fuzzy new rug. The wall padding has been wonderful. He has put his head through the sheet rock in his room countless times. The wall padding has made these blows softer for Cole's head and seems to be saving the walls. Someday we'll have to fix what is underneath the padding but that is the least of my worries right now.

Have a great weekend and enjoy the "warm" weather. I'm off to purge toys, clothes, and who knows what else. And then I'm going to the Harley store to buy more undies. I think Cole deserves every pair in the store.

My MVP

2009-02-01T21:46:00.003-06:00

Today was a breakthrough day for Cole... a day Pat and I have been working toward and wanting for nearly five years.

Last night the boys spent the night at my parent's house so we could have a night out. We had a great time. I called my parents early this morning to see how the night went (even though nights at either of the grandparents always go well). My dad informed me that right before bed, Cole told Grandpa that he was going to wear undies to bed; just like Connor. If you recall, about six weeks ago I made homemade John Deere undies for Cole and he only wore them for about one hour at grandpa's house. For some reason, last night something clicked for Cole. Sure enough, he put on his John Deere undies and wore them to bed. When he woke up, he still wanted the underwear on. I couldn't believe what my dad was telling me! What great progress.

I picked up the boys and brought them home. I thought for sure Cole would change out of his underwear right when we got home, like he did last time. We were almost home and Cole started talking about how "The garbage man took Cole's Pull-ups and that he was going to go poo-poo in the potty and wear undies later." He went on to talk about how baby Ethan goes poop in his diaper, "but that's ok, he's little", Cole said. We got home and I crossed my fingers.

I was unloading some things I got from Target and Cole asked me to switch the paper towel roll. He loves to do this but I knew we just put a new roll out the other day. A minute later, Cole came up to me and said, "Where's the toilet paper? Need to switch toilet paper?" I got it, he wanted to go to the bathroom, but there was no toilet paper!! I showed him where it was, we put a new roll on and he closed the door for privacy. When he was done, I wasn't sure if he would continue to wear the undies. Sure enough, he did. And he wore them all night long. He didn't have any accidents and acted as if he'd been wearing them for years.

I'm cautiously optimistic that I'll be able to convince him to change his undies and wear them tomorrow as well. Regardless of the outcome, today was a huge step for Cole-kind. I can't tell you how many times I've told myself that potty training and underwear were something Cole might never do.

I don't care if that guy made a great catch late in the Super Bowl today.... I think, hands down, Cole deserves the MVP Award.

And Connor deserves one too. We were at Pat's sister's house for a Super Bowl party. Connor was having a blast playing with his cousins. Cole did great, but after a few hours, his patience wore thin and we had to leave early. This is always hard on Connor. When we got home, Connor told Pat, "Daddy when you told me it was time to leave, I tried very hard and I didn't cry this time." Connor deserves the MVB (Most Valuable Brother). I think we could search the world over and never find a better brother for Cole.

Cole; one very brave young boy

2009-01-26T15:21:00.003-06:00

This past week, the time arrived for Cole to try three nights of respite care. Pat and I have been very stressed about sending Cole to the respite house, despite meeting the staff, touring the house, re-assurance from Cole's Case Manager, etc. It is impossible to put into words just how difficult it is to leave a vulnerable child out of your control. The statistics for abuse against these children are astounding. If something were to happen to Cole, he could never tell us and I could never live with myself.

Before we sent him there, I called the county to see if there were any reports on the house. I carefully interviewed the manager about all of the training and background check steps are taken with each staff member. I insisted on talking to other families who have children at the respite house. I had one of the staff members come to our house to meet Cole ahead of time. We even cancelled two times before actually sending him.

Our case manager worked very hard to get additional funding for Cole to attend the respite house. It is un-Godly expensive; as in $440/day! The 42 days Cole is scheduled to go there this year will cost over $18,000. There was an opening (they are hard to come by) so we felt like it was time to give it a try. Worse case scenario, we try it once and never do it again. However, if it did go well, Pat, Connor and I would get to enjoy three days/nights to ourselves, once a month.

I prepared the staff well. I filled out the intake form (with notes all in the margins) and even wrote my own intake form with all kinds of helpful information about Cole and what he likes to do for fun. To me, that was the key to respite success. If Cole has fun the first time around, he will be more cooperative the second time. If he is miserable, you probably won't get him out of the car for round two. I made a picture schedule for Cole so he could see exactly what was going to happen and when he would come home. I packed his favorite toys and snacks. I sent his John Deere blanket and pillow.

On Wednesday, our PCA Haley brought Cole to the respite house. He cried sad tears.... you know, the alligator kind. He was so sad. After about 20 minutes, Haley was able to leave and Cole even told her goodbye. I called to check in later that night, but the line was busy. I did get a call from the house at 10pm. Laura, the "house mom", called to say that Cole had settled down nicely but she was not calling with good news. My heart SANK. What was she going to tell me? She proceeded to tell me that Cole was sleeping in a chair, woke up out of his sleep and threw up everywhere. Even though he had only been at the house for 4-5 hours, I had to go get him. I got there, carried him to the truck and he threw up again. Poor Coley.

Pat and I were so bummed. We didn't care that we had to get Cole. We were more concerned this happened on the first night. Why couldn't he have just been there for one night before this happened? We were certain he would never go back again. As we do so many times with Cole, we had to roll with it.

To top it off, Connor came to me in bed at 2am and he was wet. I went to pull him close to me and realized he smelled of throw up. He didn't even knew he threw up. I went to his bed and it was everywhere. Two kiddos with the flu in a 4 hour time span. Hey, at least we got it over in one shot!

The next day the kids woke up early, ready for the day. They recovered in record time. I kept them both at home, but had long-standing plans for a birthday tea with my mom, sister and niece. My dad graciously offered to watch the boys while us girls went to have tea and lunch. Right as I was walking out the door at my parents, the respite manager called to say she would love to have Cole back and offered to have a staff member come pick him up. This put a new spin on the day. I was down at my parents and Cole's things were up at home. The respite house was in between. We also had to figure out a way for the staff member to get Cole while I was not there and for me to get home to gather Cole's things and get them to the house without him seeing me. I literally said to my mom, "What would I do without such wonderful parents?" They both helped out and everything went well to get Cole back to the respite house.

Cole stayed at the respite house for two nights. Things went really well. He slept good, had fun and made us incredibly proud. We went as a family to pick him up on Saturday. It was so great to hold Cole and kiss him. He was so happy to see us. Cole took Connor's head in his hands and said, "want to go play with Connor". I will never forget it. I was so proud of our brave young boy. I can't imagine going to a house I've never seen, to stay for two nights with people I've never met. (I write that and shake my head in disbelief that we actually sent him). The staff was so wonderful. They told us everything they did with Cole and gave me four pages of hand written notes that detailed nearly every minute of his stay. I would consider it a success.

The first night Cole was gone was stressful for us. I thought about him constantly and didn't sleep well. Even though I knew things were going well, it was so hard to let go. The second night, we took Connor to dinner at Bonfire and came to the realization that the three of us do need "respite" from Cole. We need time to do "normal" things and things that aren't possible due to Cole's disability. Once again, our amazing case manager was right.

On a side note, my prayers go out to the Fandre family. Wendy, 35, passed away last Monday from complications from a seizure and heart attack. She leaves behind two children and a husband.

I also have a heavy heart for the Paul family. Dick Paul, my dad's best friend for many years, passed away unexpectedly on Saturday. My thoughts are with my dad and Dick's family as they mourn this tragic loss.

Cherish your loved ones. Life is more precious than we ever realize.

Rollercoaster Ride

2009-01-18T21:53:00.005-06:00

I don't like roller coasters, never have. Maybe it's an interesting metaphor for me- considering I feel like I'm always on one. It's the perfect way to describe our life with Cole. Climbing the ascent, free falling, whipping around a curve, upside down, holding on for dear life, scared, excited... you know the feelings. The tide can change so quickly in our house, at the drop of at hat. You never know what's coming next. Yes, it is a roller coaster ride.

Taking off, the exhilarating part...

Cole did really well with the transition to his new room. He has woken up every day since he got home asking if he still has his new floors. He loves the rug in his room, the wall padding and his new bedspread. I was nervous that he would be upset having been away from home for six days. Cole did really well when he came home. He was SO excited to see Connor. They have been attached at the hip ever since. They have literally been singing, dancing, and racing cars for days.

I also got some really good feedback from the MN Autism Center (MAC) , where Cole just completed his first week of intensive ABA Therapy. He did really well. It's very intense, for Cole and our family. But it's going to be worth it. The therapists say Cole is doing great and adjusting well to the expectations placed on him. I had a discussion with the lead therapist about a plan to stop Cole's physically aggressive behaviors. I will go in early this week to get trained on the plan. We will more than likely need to keep Cole at MAC and/or home for a good 2-3 weeks until the behaviors end. During this time, MAC will send therapists to our home to oversee how well we implement the plan and offer assistance. These training sessions, etc. are mandatory and come up without warning. What a blessing that I am at home and able to hold up our end of this deal.

I was enthused when the lead therapist told me that in his 14 years of doing this therapy, he has never seen a child with as much potential as Cole. He strongly feels that when we eliminate the aggressive behaviors and non-compliance issues, Cole's language and cognitive skills will soar. There is no guarantee, but we'll take any progress we can get!

Hold on, we're coming into a curve...

On Saturday we attended a going away party for Pat's sister, Katie. She leaves Thursday to study for six months in the Netherlands. Friends and family gathered to wish her well. Cole had fun at the party, for a while. He danced, sang and played with his cousins. Slowly Cole's patience worn thin. Right as the party was getting into full swing, Cole reached his breaking point. He was mad, physically aggressive and constantly leaving the party area. We had no choice but to leave. Connor was heart broken. He was having a wonderful time with his cousins and the last thing he wanted to do was go home. We tried to have Connor hide, so we could leave with Cole and let Connor ride home with his Uncle. Cole got half way up the stairs and yelled for Connor. We knew it wouldn't work. Pat brought Cole to the truck and I went back to get Connor. It was so sad. Connor ran to me with tears in his eyes. I felt so bad for him. Autism just isn't fair.

I got Connor to the truck and Cole was beside himself. We passed his breaking point and now it was tantrum time. Cole was smashing his head into the window, yelling, crying, kicking, etc. Connor was still crying and that made Cole even more mad. I had to sit in between the two kids to keep them both safe and safe for Pat to drive. The fits went on for ten minutes until we got the the Dairy Queen. Cole was happy with his purple (chocolate) cone and Connor got a root beer float. It's hard to put into words the intensity of the situation, but we were all in fright or flight mode. Thank God for DQ. It's times like this when we can't help but feel envious of people with all neuro-typical children. They have such freedom. We, on the other hand, are constantly at Cole's mercy.

Only a few bumps....

Today went ok. We all played outside and even had a winter bonfire. Check out the pictures!! The hard thing again, was Cole not wanting to be one step away from Connor. Cole dictated everything they did. Cole was aggressive with us today. I was punched, pinched, scratched and kicked countless times- many times without knowing it was coming. It gets old and it's just not fair. We are anxious to hear what plan MAC has to stop this behavior. It would be a miracle in our eyes.

*Please say a prayer for Wendy Fandre. I've known Wendy for almost 20 years. I played sports against her in high school. After that, we always worked out at the same health club and knew one another through mutual friends. Wendy, a 35 year old mother of two, had a massive heart attack last Monday. She had a pre-existing heart condition. Wendy was without oxygen for an extended period of time and as a result she has major brain damage. Doctors have told Wendy's family there is no chance she will ever recover. Today her family removed life support. Wendy is breathing on her own, but that is all her body is capable of. We don't know what the future holds, please keep her family in your prayers. caringbridge.org wendy fandre I've put her picture on my blog.

Sadly, it is things like this that make you realize you have nothing to complain about. I may not always have it easy, but I am here. I love my life, my husband, kids and family. I cherish each day I get with them and I know that anything I get to do with them, good or bad, fun or not-so-fun... is a gift.

Cole's new room!!!!

2009-01-14T23:07:00.002-06:00

It's been an incredibly busy six days. I feel like I've hosted my own episode of "Extreme Home Makeover". I can only imagine what those people go through! It all started a few weeks before Christmas when I emailed Cole's Case Manager to see if we could get approval for one more carpet cleaning this year. She emailed me back saying, "Yes, but have you ever thought about putting in hard wood?". Long story short, the state had some incremental funding in 2008 and if were about to get two bids, submit the paperwork and get the work started by 12.31.08, we could get $8/sq foot funded by Cole's waiver program. Luckily, one of our neighbors is a general contractor and he had just done this exact thing in our next door neighbor's house. We had him and another company bid the job. I submitted the paperwork (it's a lot of work and not as easy as it seems!). Keep in mind, it was the holidays. Needless to say, we only had to fund a small portion of the work ourselves and this turned out to be an opportunity we couldn't refuse.

The work started on 12.31.08 at about 7pm. Pat pulled out the carpet on the stairs and that would suffice until this week. The next step was to figure out where Cole would go for six days while we take apart his room, have the flooring installed, sanded and stained. Thank God our families are amazing and offered to help without hesitation. Everything just fell into place. Once Cole left on Thursday, Pat and I got busy preparing the house. We had to take Cole's entire room apart. I took it upon myself to make my best attempt at fixing the countless dings in his walls. I washed the baseboards and found even more chocolate milk stains (remember the previous blog entry?). We took apart basically our entire upstairs. It was a lot of work!

The rest of the work resumed on Friday. Our neighbor and his work partner worked on Friday night and for 14+ hours on both Saturday and Sunday. Brian was able to fix Cole's doorway. When my dad pushed on the door frame, the entire wall literally moved about 1". Tons of door slamming and studs that weren't screwed in were a bad combination. Brian even brought spray to hide the chocolate milk on the ceiling. He was so thorough and did such great work in our home.

On Monday morning, Connor and I headed to a hotel and Pat met us there after work. Tara, Elle and Ethan even joined us for some swimming. It was a fun two days. We missed Cole so much. It's so hard to be away from him, especially when you know he's so close by. We sent him pictures of the progress and told him he would come home to a new bedroom. There is no possible way he could have been in the house over the weekend. The house looked like a land mine had gone off. It was really loud and not a place for any of us, let alone Cole.

We finally got to come back into the house Wednesday at 1pm. My dad met me here to start the re-assembly. Pat had important work commitments and couldn't get the day off. It was so important to me to have Cole's room ready for him. I got a new bedspread and rug. We also got the padding installed on his walls. The dings were fixed; with the exception of the main wall that had several 5-7" holes that need professional repairs (that is what the padding is for). We put new handles on his dresser and put everything back in order. After that, my dad and I carried up couches, chairs, a computer desk and many other things. My dad is so handy. He can fix anything, I swear. Cole does so much damage to our house. My dad was able to make some mends to things and I felt like I was moving into a new home. It was GREAT! Thanks DAD!!!

Brendan came over to help move our really heavy Hickory table. Thanks B. It didn't take too long and pretty soon the house started looking like normal again. Just in time for Cole.

Cole got home and he was thrilled to see his new room. He was so excited and loved it. I was nervous that he might be upset about not having carpet. Cole loved his new wood floors. He said, "Carpet is gone. The garbage man took it". He was so happy to see us. He hugged Connor and asked him to play. They played on the computer, raced their 4-wheelers up and down the hallway and sang karaoke. It was a great night, for so many reasons.

I'm so thankful I asked for another carpet cleaning and I'm even more thankful to have the best Case Manager I could ask for. She has worked just as hard as I have to make this happen. WE have such a great team rooting and working for Cole.

Thank you to everyone who made this possible. We are so very thankful and could not have done this without you.

LOTS and LOTS going on

2009-01-09T23:42:00.003-06:00

Ahhh... where to begin. Sorry the updates have been lack luster as of late. To say we've been busy us an understatement. I have so much on my plate this week I'm lucky if my teeth get brushed each morning. But it will all be worth it!

First, we are in the process of extending the wood flooring in our kitchen area to most of the main level of our home, including Cole's room. I have been working very hard with Cole's case manager to get approvals for new flooring in parts of our home. We lucked out. The county had some incremental funds at the end of the year. After a ton of hard work, we got approved for up to $8/sq foot. We hurried and got the bids done, chose a contractor and the work is being done this weekend. The $8 didn't cover the entire cost, but it made it so we could not resist.

The work is in progress right now. We had to get Cole out of the house for 5 days!!! It's so hard on all of us to do that, but it's for the best. Cole's room is dismantled down to the floor boards. And everything from his room and our living room is in the basement family room and spare bedroom. There is no place to go. We all have to be out for two days while they sand and put the finish on. I can't wait for Wednesday to say the least.

I'm the midst of all of this, I'm working very hard with our case manager to develop a new waiver budget plan for next year. I have to write a 15 page document on how/where/why each waiver dollar will be spent. There are pages of guidelines and numerous things to research. It's a huge undertaking but Cole is worth every second I spend on it.

We are also transitioning Cole out of Fraser Academy and into a full-time ABA therapy program. I'll give more details in a later blog entry. He starts Monday and will be one of twelve children at the MN Autism Center. He will have three therapists who will each work with him one-on-one, for forty hours a week. There is also a huge family component and training program. It's going to be intense but hopefully worth it's weight in gold. I have been preparing a lot for that- tons of meetings, paperwork, transportation schedules, etc. and there is much more to go. More to come on that.

We survived holiday break. The last 4-5 days were REALLY rough. Cole was so aggressive with all of us. It was so hard on us. I tried very hard to stay strong and patient, but even I wore down those last few days. I can't stress just how difficult it is for Cole to be out of routine, especially in the winter time when he can't stay outside for long periods of time. He resorted to hitting, scratching, throwing things, throwing food (think bowls of tomato soup against the wall and buckets of water from the tub). Yes, it was a long break.

Thanks to everyone- specifically our AMAZING families who are helping us through these next few days with Cole while our flooring is installed. We could not do it without you. Our gratitude to each of you is profound. We love you and couldn't get through this journey without each of you. Yes, we have the best extended family in the world.

A tough day

2009-01-01T22:44:00.002-06:00

Many of you have asked how things went with the John Deere undies. Cole spent the previous night at his grandparent's house. Grandpa was able to get Cole into the undies quite easily. I picked Cole up and right when we got in the car, he started talking about going to the store to get pull-ups, throwing away his undies, etc. Sure enough, we got home and in a matter of minutes, Cole was undressed from the waist down. We tried everything to convince him that it was January and time to wear his undies. It just didn't work. Cole was full of anxiety, searching high and low for pull ups. He refused to put undies on and threw them in the garbage. He was putting his hands in places that are not sanitary. Some things just aren't worth the fight. This was one of those times. We had to make a quick decision that could have many ramifications. Rather than risk Cole thinking it was ok to walk around half naked or regression in the potty training gains he's made, we put the pull ups back on. I realized it was too big of a leap for Cole. I think we need to re-evaluate the underwear goals. We need to keep him going potty on the potty and try to get him to wear the undies for even 5-10 minutes each day; build up a tolerance for him. We'll see how that works.

Today was a really rough day. To be honest, it was one of those days where Pat and I question how long Cole will be living in our home. The last thing we want to do is not have Cole with us each day, but there are days when it doesn't seem possible. It was one of those days where we describe Cole as a wrecking ball. He is set off at a moments notice, for no apparent reason. There are sheet rock crumbles in the hallway from where he slammed his door. He's done this so many times that the door frame is warped, the wood is splitting and the sheet rock is in despair. He's hit me so much today that my upper arms still sting. He's been physical with all of us. He kicks, scratches, punches- you name it. My heart broke today when I overheard Pat telling Connor to not walk in certain areas of the house because Cole might become aggressive toward him. It's not the first time we've had to tell Connor this, in fact, we tell him this multiple times a day. Cole can be so aggressive with Connor and we are at a loss at how to completely prevent it, and how to handle it. I tell Connor that if Cole understood how Connor felt when Cole hurts him, he would never do it. I welcome any suggestions you might have.

Many times, we feel like Cole is taking over our household. He is the barometer as to how we are doing. If Cole is doing well, we are doing well. If Cole is in crisis, we are in crisis. He dictates so many things. Today Cole had a tantrum because he wanted Connor to wear a short sleeve green t-shirt. We had to sneak Connor out of the house to try to get him to the YMCA with me. Just as we were about to leave, Cole ran out into the garage and demanded Connor stay. If Cole wants to play outside, Connor has to play outside. Even if Connor doesn't want to. If Cole is hungry for Campbell's Tomato Soup with the Healthy Choice green label and we don't have it, he wants to go to the store NOW and get it. Last night, he wanted to go home from Grandpa's because a marker was missing from a drawing board we brought. I literally had to distract him for 20 minutes and then sneak out the back door of my parents house so he would let me leave. I could go on and on. Every minute of every day is like this. This is life with Autism.

Many of you probably are wondering why we don't just discipline Cole or tell him no. Believe me, we've tried... and we pay for it. I remember the first time we put Cole in a time out (against Doctors recommendations), Cole threw a toy across the room so we put him in his room for a time out. Cole was about 4 at the time. Maybe 10-15 seconds went by and we heard a huge thump. We rushed in to see that Cole had hit his head so hard against the wall that he put a 5" hole in the sheet rock. You should see Cole's walls, they are full of divots and holes. We can't keep up with the repair and actually have padding we are about to install. Doctors told us that discipline with Cole would be nearly impossible for two major reasons. Cole's brain is not capable of reasoning that because you throw a toy across the room, you have to sit in a time out. His brain can not make that connection. Cole also doesn't have what is called, "Theory of Mind". Theory of mind is the ability to know that other people have their own minds; make their own decisions, feel their own emotions, want to do different things, etc. We try to prevent and re-direct as much as possible, but we can't always anticipate Cole's outbursts and there are times when he refuses to give up. It's an incredibly difficult way to parent.

I apologize for venting. I have tried very hard not to make this blog a place where I say anything negative about Cole. We love him so much, so intensely and passionately. He brings us a tremendous amount of joy and an amazing perspective on life. We could not be more proud of him. But the reality is that we are human and we have a point where our walls break down. Today was one of those days.

Pray that Cole has a better day tomorrow. I haven't told him, but we have a play date with his cousins. That should make him very happy! Hopefully he'll cooperate so Pat can enjoy a day off of work and get some time to relax (and maybe ice fish).

Happy New Year to you all. I hope you got to spend quality time with those you love.

John Deere Undies

2008-12-31T13:53:00.005-06:00

Most boys are potty trained by the time they are three to four years old. Cole will be eight in February and he is not fully potty trained. We have been working so hard on this, for so many years. We have gone through stages where Cole tries to change his bm and wipes his butt on that carpet. He's peed on the floor, walls, carpet, couch- you name it. We get strange looks when kids see he still wears a pull-up. It's been quite a journey. He doesn't understand that poop is gross and unsanitary.

For the past two years or so, Cole has sparatically gone pee on the potty. He typically has more success when he's at school or with a Personal Care Assistant. It took him until about six months ago to poop on the potty. Even then, he refused to poop on the potty at home and would only do it for others once every few weeks. It has been an uphill battle.

This is common for kids with Autism. Some Autistic children and never potty trained. We are 100% confident that Cole knows what to do, he just doesn't want to change his routine. Why would he? He's been wearing diapers or pull-ups for nearly eight years. Kids with Autism will do anything in their power not to change their routine. They like things the same. They want to know what to expect. In regards to potty training, this works against us.

We have been trying to get him to try on underwear for over two years. He thinks it's a game and flat out refuses.

We had a break through a few weeks ago. For some reason, Cole decided one day at home that he wanted to go poop on the potty. We noticed he had been going pee on the potty quite a bit, but never poop. This day was different for him. Something triggered inside his adorable head and made him go poop on the potty. He was so proud and he did every step by himself. In fact, when we asked to help he replied, "You go away. I do it all by myself". And he did!

For about two weeks now, Cole has been using the potty about 90% of the time. We decided it was time to get him into underwear. Maybe this would seal the deal and put our diaper changing days behind us? We told him that in January he would be all done with pull-ups and he would wear "undies". We have been drilling it into his head consistently every single day, multiple times a day. I even made him special John Deere undies. I ordered some John Deere iron ons from eBay. I dyed some underwear green and put on the iron ons. We have also made a visual calendar for Cole. It shows when it will be January (although he knows this better than we do) and there is a picture pull ups up through December and green undies on January 1st. We've told Cole the garbage man is taking away the pull ups. We've also talked a lot about who in our family wears undies and how Cole it too old for pull-ups.

Tomorrow is D Day... or should I say Deere Day. We are hiding all of the pull-ups and only giving Cole the option of wearing his new undies. He's seen them and seems to like them, now he just needs to wear them AND not go potty in them. It's going to be a big day for Cole and our family. Send good vibes our way and pray that it works. We know Cole can do this. He just needs to establish a new routine and form a few new habits. After eight years of changing Cole's diapers, I think it's time to conclude this chapter.

I've attached a few pictures of the John Deere undies and the picture schedule (sorry it imported upside down and I can't figure out how to fix it).

Happy New Year to all of you and may 2009 be filled with health, fun and countless blessings.

Sometimes the best gifts are things you can't wrap.

2008-12-27T11:28:00.010-06:00

I hope you all had a wonderful Christmas with your family and friends. It's been a busy few weeks at our household. Cole has been off of school since December 18th, so it's been harder for me to blog. I do have something that is well worth the wait!

On Cole's last day of school, he had a holiday concert. I went down with my parents to see Cole perform. I wasn't sure what to expect. He has been transitioning into the 2nd grade classroom from a resource room. Transitions and change are very difficult on Cole. In addition, he only had a few days to learn his song. Fraser Academy did an amazing job. Nearly all of the students at this school have Autism or other special need. Pulling off a holiday concert is quite the task. It was nice to see the gym so full of parents and other family members. It was a full house.

I saw Cole walk in with his homemade reindeer hat on. He sat nicely and waited while the other classes performed. Soon it was time for his class to go. They got the children up on stage. Cole saw the microphone and got so excited. He did a great job at keeping his body calm and using his patience. The first song was a holiday rap. The kids each took turns either dancing or singing at the mic. Cole got up right away and slowly swayed to the beat. He then make a funny sound into the mic and laughed and laughed. After the rap was over, the teacher announced it was time for 2nd grade to sing "Over the River and Through the Woods". Cole was standing close to the mic. Before the music started to play, we could tell he saw Grandpa Denny. He focused his attention to Grandpa and gave him a wave. Then the music started. To my amazement, Cole grabbed the microphone and proceeded to sing the entire song!!!

I wish I could put into words just how incredibly proud I was of Cole at that moment. I could barely hold the camera still as I recorded. Tears were flowing on my cheeks. I wasn't the only one. I looked around and Cole's teachers, paras and therapists were also in tears. Seldom have I felt an emotion so intensely in my life. I could literally feel my heart jumping. If I could have cut into national television, interrupted every program on air and shown the world the video of Cole's performance, I would have. Cole gave me the best present of my life that morning.

I think back to his first speech therapy session about four years ago. The therapist literally spent a half hour just trying to get Cole to stay in the room and sit on a chair. I remember she gave him an m&m if he sat for even a few seconds. Working on his language wasn't even the goal at that point. I compare that to the performance Cole gave and it makes me realize just how far he's come. Cole has worked incredibly hard these past four to five years. He is in school and therapy for 40+ hours/week, all year around. It's paying off... big time. He's gone from a boy who took six months to learn how to say, "I want", to a boy who I just overheard saying to his brother, "Connor, do you want to snuggle on the couch?" and "Do you want to listen to If you're happy and you know it, clap your hands". WOW- what an improvement!

Connor also gives us wonderful gifts. He is truly an amazing brother to Cole. He has taken on such a nurturing role with Cole. He looks out for his best interest and works just as hard as we do to get Cole to speak, interact and socialize. Connor loves his brother and always says he wants to be just like him. I'll never forget the time we were in the car together and Connor said to me, "I love that my brother has Autism. Cole likes to wrestle, he likes to sing songs and snuggle." Connor loves Cole unconditionally, for who he is and the way he is. Connor never complains and doesn't try to change Cole. He's pretty amazing for a five year old.

I hope you all had a nice holiday season. We were blessed beyond belief with many precious gifts. Our favorite ones did not come in packages or from any store. Our boys bless us each day with the most priceless and special gifts we could ever ask for.

I've attached a video from Cole's performance and a few pictures from Christmas. Cole did awesome. He loved opening presents and for the first time in seven years, he grasped that he was getting more than one present. It was so fun to see him tear open gifts and get so excited about what he received.

Happy Holidays and Happy New Year.

Two wonderful surprises

2008-12-17T08:36:00.004-06:00

This past week, Cole gave us two amazing gifts.

On Sunday we were at my parent's for my nephew Ethan's baptism. After we were done celebrating, it was time to go to my niece's dance recital. The plan was for Pat to take Cole home and for me to take Connor to the recital. Cole had other plans. For some reason, Cole wanted to stay with mom and Connor. He literally said to me, "Go to recital. Watch Elle dance". I thought to myself, "Why not?", so off we went. Cole was thrilled to follow uncle Brendan in his red Mustang all the way to the recital. Cole loves Uncle B's car and the sounds it makes. (He does a great impression!)

The recital was at the Coon Rapids High School auditorium. We explained our expectations ahead of time: no running, you have to sit in your chair and no yelling- or we go home. We took our seats and thankfully within five minutes the show started. Cole did great!!! He loved seeing the costumes and he thought his cousin was in every dance. He even gave a round of applause after each dance- without prompting. He sat in his seat for a few dances. After a short while he sat in both mom and grandpa's lap. Cole loved listening to the music and commenting on the costumes. I was so proud of him. He was the perfect gentleman and behaved so well. I was so thankful for this. What a blessing for us.

On Monday night we had an appointment with Santa. We haven't been able to get Cole to see Santa for at least three to four years. Lately Cole has been singing a lot of Christmas songs and talking about Santa. We thought it was a good time to try another Santa visit. We took the last appointment of the night. For those of you who don't know, there is a flower shop in Andover called Andover Floral. You can make an appointment with Santa so you don't have to wait! They do a great job. Cole walked in and was so excited. Connor hopped right on Santa's lap. Cole sat on the chair next to them. He was out of picture range so we were trying to get him to sit next to Santa. Soon Cole found some jingle bells. He grabbed them and began to shake them. I told him if he wanted to hold the bells he had to sit by Santa. Sure enough, it worked! Cole slid over by Santa and said, "I'll sit right here". He shook the bells, sat by Santa and looked at the book he was reading. The worker was able to get a few good pictures of the boys with Santa. Pat and I were so happy. It was wonderful to see the boys share this experience together.

I'm so glad we try to do things with Cole. Sometimes it back fires, but sometimes we hit the jackpot. This week we've hit the jackpot twice- and the reward is far better than any casino pay out!

Thanks Cole. We love you so much.

If there is a vote for "Best Husband"... mine wins.

2008-12-13T11:34:00.002-06:00

It's crazy to think Pat and I have been together for over 20 years. I still remember the first time he introduced himself to my sister (before we were dating). We were walking into summer volleyball/football practice sessions. Pat walked up to us and said, "Hi my name is Pat. I'm going to marry your sister one day". Obviously he had no idea that would come true, but here were are; married for nearly twelve years, with two gorgeous and amazing children.

I came home last night to some flowers and the note that read "The three boys in this house are lucky to have you as our mommy. We love you". Yes, my husband is the best one around. Hands down.

Although I'm still waiting for the Corvette he promised he would buy me someday back when we were in tenth grade. That's ok.... we've got a lot of time ahead of us!

Thanks Pat for all you do- for me and for our boys.

A poem worth sharing

2008-12-11T08:16:00.002-06:00

I came across this poem and love the message it has...

Loving Autism by Jamie Knopik

If only you could comprehend how hard life is for me,

I know I'm only a little boy, but my world I want you to see.

Things are always changing right before my eyes,

but don't you see I can not change with the direction of the tide?

It's a different kind of world I see, with my big green eyes;

they call is Autism, and they think it's my demise.

What I'd really like for them to know

is that my life is really about surprise.

Everyday is something different- something very new,

a phone, a clock, no a watch, I mean a shoe.

Sometimes I have a hard time expressing what I want,

and changing my mind.... well I do that a lot.

I have a hard time talking to people; please don't think I'm rude.

I try to talk to another child, I really do.

But sometimes my words don't work, and I hit instead-

not I really blew it, and no one wants to be my friend.

Some people are trying to find a cure for Autism right now as I speak,

but why do I need to be cured?

There is nothing wrong with me.

Please don't try to heal me, I'm not sick;

and instead of trying to fix me, enjoy my creativity.

My Autism makes me who I am and sets me far apart,

but it only brings me closer to my family's heart.

Autism is not something you should accept- it's something to embrace;

for life with me if full of wonder and constant change.

I break up the monotony of daily life,

and although I don't mean to, I sometimes cause some strife.

Autism changed me from all others except for my own kind,

and it has succeeded in showing all the world,

that love and Autism bind.

A mess... inside and out!!

2008-12-08T22:28:00.003-06:00

At the Schusted house we are always thrilled when it snows outside. Cole LOVES the snow. He will shovel everything in sight, including the street. And when he's done, he'll ride his John Deere riding toy in the snow. It makes him so happy and gives all of us a fun activity on these dreary winter days. This year, Pat has his 4-wheeler and the boys each have a riding toy. It was a sight to see them all out "plowing".

On Friday we were blessed with a beautiful snowfall. We all had so much fun in the snow. This particular night, Cole had the added bonus of a visit from Santa. He arrived in the neighborhood on a huge fire truck! The boys were so excited and Cole waved and quietly said, "Hi Santa!". After Santa passed by, Cole went on with his shoveling while Connor asked, "Mom, how did Santa get here?" Connor has so many questions about Santa. I love his age and all of the fun questions that come along with it!

After a while, Cole did get cold. He came inside with me around 8:30pm. Cole decided he wanted some "coffee". For those of you who don't know, Cole mixes a little bit of milk with a lot of chocolate sauce. He pours it in his plastic camouflage coffee cup and sips it just like his Grandpa does, complete with sound effects. After he mixed his coffee, I suggested it was time for a bath. Cole said, "no bath, not yet". This is typical. At this point in time, I start the bath water and by the time I turn around, Cole is behind me getting ready to jump in. Not this night. I turned on the water and heard him say in a stronger voice, "NOT YET. NO BATH". I walked back into his room and told him, "Ok Cole. Mommy will go shut the water off. You can take a bath later". I stopped the water and when I got back into his room (maybe 7 seconds later), he had taken his cup of coffee and thrown it across the room. It was EVERYWHERE... walls, ceiling, carpet, blinds, garbage, dresser, comforter... everywhere. It looked like it had rained dark chocolate milk in his room. I proceeded to quickly clean up the mess. It took me at least 20 minutes.

Many people ask about discipline with Cole. It is nearly impossible- literally. Autism experts have told us that Cole's brain is not wired to relate his action to the discipline. They say you can try to discipline, but typically it just escalates the situation. That is the case with Cole. We do send him to his room and talk to him about naughty things he does. But at the end of the day, the rules are different for him. I remember the first time we sent him to his room for a timeout. It was over three years ago. He was about four at the time. We put him in his room and closed the door. Seconds later we heard a huge thump. We walked in and Cole had slammed his head so hard against the wall that he put his head through the sheetrock. We knew at that point we would need to try our best to prevent his behaviors and redirect him when he is anxiety-filled and upset.

Despite wanting to put Cole to bed without snuggles and a bedtime snack, I had to patiently calm him down and talk quietly about what he did. At that point, I had to let it go and remind myself that we have more important battles to fight.

At least we tried!

2008-12-02T22:40:00.002-06:00

This past Saturday the weather was very tolerable for late November. It was nearly 40 degrees at 5pm. We didn't have plans for the evening, so I suggested we go to the Hollidazzle Parade. We knew we would need assistance so we called my parents to see if they wanted to join us. Everyone was on board so we grabbed some pizzas, met at my parents and literally piled in the truck to head downtown.

Cole has been to Hollidazzle, but it was before he was diagnosed. I think he may have been two years old. I remember we watched the parade from the skyway and Cole was very busy and hard to keep track of. I swore I would never take him again.

We wanted to try again this year, not knowing how it would go. We had some good ammunition... Grandpa and Connor; two of Cole's biggest heroes. Cole has been into doing whatever Connor is doing and Grandpa can usually get Cole to cooperate and follow rules.

The night started out well. Cole was so excited for a parade! He wore his snowpants and warm weather gear. He loved riding in Grandma's truck with Connor and cousin Elle by his side. He thought it was funny to see Daddy and Grandpa crawl in the way back. We arrived about 45 minutes before the parade to get a front row seat. We rode the elevator down the parking ramp... a big hit with Cole. Once we found our seats, Cole lost patience quickly. Daddy and Grandpa took him for a walk, but even after that we still had 20 minutes to wait. I bought him a cool light up toy and even that didn't entertain him. He kept saying, "Want people to go home. Want to watch inside.". There was no where inside to go (and the fact that he probably was remembering the skyway from nearly six years ago did not dawn on us). Somehow we managed to keep him relatively calm and more importantly, safe.

Finally the first lighted float came down the street. Cole was less than impressed. He was starting to yell, "Go HOME.". We tried to keep him calm. Mommy snuggled him a lot. After a few more minutes, Cole took it upon himself to take off his boots, then his snowpants and finally his coat! At that point, it wasn't worth fighting. Thankfully we had two blankets so Cole was able to sit close to mommy and have fun making a fort. He did like the last float. It was the one with Santa. He waved and said quietly, "Hi Santa." That made it all worth while.

Eventually Pat carried Cole back to the truck- sans his boots and winter gear. We all agreed it would be the last Hollidazzle for Cole. Not enough razzle-dazzle for him.

I'm glad we tried to take Cole to the parade. It was so nice of my parents to come along and help. It made it easier. It is times like this when we are reminded of just how many little things we miss out on as family. There are countless things we can not do with Cole and I'll admit, it's hard. When you start a family, you have all of these visions of things you want to do with your kids and experiences you want to give to them. Autism has robbed our family of many of those things. I have accepted this but it still doesn't make it easier. I can say that we try our best and have found many things that Cole and Connor enjoy.

Cherish the times you have with your family. Take advantage and appreciate the little things- bike rides, family pictures, the movie theater, play dates, safe car rides, down-time, home projects, etc. They are life's treasures and should not be taken for granted.