John Deere Undies

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.

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

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.

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

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!!

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!

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. 

Changes are coming!!

I look back on the day Cole was diagnosed with Autism. It was July 1, 2004.  Pat and I had were not prepared for Cole's diagnosis. He hit so many of his milestones and being the first grandchild on both sides of our families, we just thought he was a very active, curious child. I'll never forget the feeling of being in Dr. McLellan's office that day and the shattering words that came from his mouth, "There is no easy way to tell you this, but Cole has Autism." I remember I was sitting across the room from Pat and the only thing going through my mind was "keep it together, just keep it together". The doctor left the office to gather some information for us and we just stared at one another.... way too many emotions to even have a reaction. The doctor came back to us, gave a folder and told us to get in touch with the school district ASAP. I know he shared a lot more with us, but my ability to actually process his words was significantly impaired. I do recall one thing he stressed, "You will grieve this diagnosis like the death of a child." He was right, there are times when I still grieve in that way today. We left the office with Cole and walked to our vehicles. It was then that the words sunk in. We stood in the parking ramp, holding each other, and cried. I remember looking up while hugging Pat to see a mom with five children behind her. It was obvious that one of the children had cancer. It quickly put things in perspective for me. Despite my overwhelming sadness, I knew things could be so much worse. This was not a death sentence for Cole, it was the start of a lifelong journey for our family.

Many parents describe life with Autism as if you were on a plane to Florida and you land in the north pole. There is no road map and it is not what you signed up for. There are some things you know; Autism is a lifelong disability, there is no cure, time is critical and every child with Autism is unique, so what works for one may not work for the other. The learning curve for Pat and I was exponential. Not only did we need to learn about Autism, we needed to educate ourselves on what therapies existed, how we would pay for them, how he would get there and countless other things. We met with numerous people, made tons of phone calls and tried our best to maintain our composure. I would quickly learn that managing Cole's disability is literally a full time job. And it is also a race against time. 

One of the therapies we tried was in home ABA (Applied Behavioral Analysis). We were fortunate to move up the long waiting list fairly quickly. When Cole was four years old, we had an ABA therapist come into our home. The program would be intense. A minimum of 25 hours a week. We were so thrilled to have this opportunity. ABA is one of the few known therapy interventions that can significantly improve children with Autism. The therapist was very nice and helpful. Cole, however, had other plans. He reacted so violently to having a therapist in our home. I remember her trying to get Cole to take a single Goldfish cracker from her. He threw an intense tantrum. We both tried to calm him but he escalated. He was kicking, scratching, climbing on me and really hurting me. It got to the point where the therapist herself had to remove herself from the situation. I was crying so hard I could barely talk. She asked if there was anything she could do. Between gasps, I told her to get a wet towel (Cole was into that at the time). She got the towel and I put it in Cole's mouth. Miraculously he calmed down. The therapist looked at me and said, "This just isn't going to work with Cole." I was crushed. And hurt. Cole was so rough with me that I recall it hurt me for at least three days to wear the seat belt in my car; remember- Cole was four. 

Fast forward to spring of 2008. It came to my attention that the MN Autism Center (MAC) was creating a center-based ABA program in Minnetonka. The second I found out, I called and placed Cole on the wait list. I called every month to find out Cole's status. I went to the open house in September and fell in love with the facility and the employees I met. The facility is located in a renovated building, amongst a few acres of wooden trees. It was perfect. In October we finally got the news we were looking for. There was a strong possibility of an opening for Cole in the "near future". On November 1st, I took Cole for an assessment. Paul was amazing with Cole. We left the assessment and Cole said, "Go to MAC. Have fun with Paul." Just this week, we found out there is a full time opening for Cole starting in January!  He will be one of twelve kids in the center based program. 

Like I said before, there is no road map with Autism. There are countless things to try and only so much time in each day. The wait lists are months, if not years long. No matter how much you do, you feel like it is never enough. We are truly blessed to have Cole in place to start this program. We know it will help Cole and our entire family. More importantly, we know Cole wants to go and he will be happy. A happy Cole is a happy family.

Sleep little one

As some of you may know, many people with Autism do not sleep... literally. They may sleep two to four hours a night and that is it. To this point, we have been so fortunate in this department. We always thought it was an advantage of Cole's high activity level; at least he tired himself out and slept decent. I've heard horror stories at support groups from parents who literally take shifts during the night to care for their Autistic child who rarely sleeps. One will sleep from 9-2 and the other from 2-7. I have always prayed this will never happen to us. Cole takes so much of our energy each day and to add sleep deprivation to that would be nearly impossible.

Like I said, Cole has been a good sleeper. He plays so hard each day and for the most part he crashes at night. That was until last spring when daylight savings time hit. This is a tough adjustment for most of us. It's lighter out later and frankly, the weather is too nice to want to go inside and get ready for bed. Pat and I spent the majority of the spring and summer nights trying every trick in the book just to get Cole to stay in his bed. I'll spare you the details, but it was a nightmare. From 8pm to sometimes 11pm, we took turns every five minutes putting him back in his room, reading books, changing movies, letting him sleep in his jeans, socks and t-shirts... you name it and we tried it. It was thoroughly exhausting and it was nearly impossible to get anything done or have some peace and quiet. I always felt especially bad for Pat, who leaves for work very early in the morning and most often wanted to go to bed before Cole would even stay in his bedroom. Our patience was wearing very thin.

About a month ago, we tried giving Cole Melatonin. It has been a life-saver in terms of getting Cole to sleep. Melatonin is a natural sleep aid. We crush it up, put it in his Oreo cookie and thirty minutes later he is out. What a blessing!!  We thought it was too good to be true. At first it worked great but in the past few weeks, Cole has been getting up really early. And I mean REALLY early. 

Many nights he come to our door, knocks on it and says, "BOO!!".  It's cute, but not at 2:13am. And not after you've done it four times already that night. For some reason, Cole isn't staying asleep for long. He is getting up, thinking it's morning. It doesn't matter what we tell him or how we explain things to him, when he is up, he's up. Sure there are nights when we can walk him back into his room and he'll fall right back to sleep. Last night was not one of those nights. Last night it was 3:03am. I knew it right when I saw him that he was up for the day. Cole was bright eyed, he got himself a cold drink of water and started talking about his new ceiling fan. Between the hours of three and six thirty am, Pat and I must have walked him back into his room at least 10 times. We both laid with him, trying desperately to get him to relax. Nothing worked. Pat got up at his usual 5am and headed off to work. Cole was still awake. Finally around 6:30, he fell asleep. Bummer for Cole, I had to wake him at 7:15 to get ready for speech. Cole was very tired, but he hopped up and got ready to go. I crawled back into bed and managed to get another 40 minutes of sleep until Connor woke me up. After some snuggles, I got up, took Tylenol to rid my sleep-deprivation headache and started my day. Pat, in the meantime, had eight+ hours of work ahead of him. All of this aside, I am so thankful to have been given this day. Despite being tired, I made the most of it. It was a gift.

But..... if you feel like sending some good sleeping vibes our way, we will gladly take them.  :-)

so proud

There are so many things I am proud of when it comes to Cole. He always impresses and surprises me with his skills; some I'm not always aware he has. As a parent of a special needs child, you are constantly trying to balance your child's vulnerability with their ability. I admit there are many times when I err on the side of caution verses letting Cole show me what he can do. I try to let go but it is so hard, especially when your child has a disability.

On Friday, Cole and I had a great morning. Connor was at Grandma and Grandpa Schusted's house. Cole and I had so much fun together. We snuggled a lot and just had fun. The plan was for him to go with a PCA in the afternoon so my sister and her new baby could come over and raid my bins of boy clothes. I drove to the place to meet the PCA and Cole refused to get out of the truck. This is something he's done three times in the past ten days. I'll admit it's been frustrating on my end. I selfishly need some time to myself and on this particular day I had plans. Cole had other plans for us. There is no way I would ever force him to go with someone. Cole was obviously loving our time together and didn't want it to end. I don't blame him. I love him lots, too.  So Cole gave the PCA a high five, wiped his tears and off we went to get Connor. 

I called my sister, who graciously said, "Lets not change the plans. I'm sure Cole will do just fine." This was one of those moments I was just writing about. I wasn't sure how Cole would do around baby Ethan. He saw him at the hospital and was not too interested, but having Ethan in his home was a whole different ball of wax. Cole can be very protective of his domain. Isn't it wonderful of Tara to be so confident and easy going!!

Once again, Cole surprised us.  We played at home for a while and soon enough, Tara pulled in the driveway. Cole was so excited. He said, "Tara's here!!  See baby Ethan!" When Tara got in the house, Cole immediately pointed to the bouncy seat (if you remember, he dug it out from storage a week ago and wanted Ethan to come over to sit in it). He said, "Ethan sit her. Cole buckle him in.". So Tara brought Ethan to the bouncy seat and Cole was right at her side. Tara tried to buckle him in and Cole took over- gently. He snapped the two buckles and said, "There she is. She is sleeping". (Cole often confuses his pronouns) Isn't that great!!  I know Cole loves his cousin, even if he can't express it as we do. Cole does it his own way. 

It was more stressful having Cole home while we were going through the baby clothes. He wanted to go on a bike ride, yes, in November. Thankfully he's getting more used to indoor activities and he's really playing a lot with Connor. All in all it went great and I was so pleased at Cole's behavior. He just continues to amaze us.

PRIDE IN HOMEWORK

I'll make this quick, but I wanted to share. I was so proud of both boys tonight. I was working on homework with Connor and Cole wanted to join in. He'll do anything Connor is doing. We have tried countless times to get Cole to do his homework and his patience lasts about eight seconds, and I'm not exaggerating. 

Connor was doing an awesome job circling his sight words and coloring in the lines. I printed off some tractor coloring pages for Cole and let him join the fun. While the pages were printing, Cole grabbed a sheet of paper and started drawing. He drew a house with a chimney and some smoke. I was so impressed!  He then wanted his tractor pages stapled together just like Connor's homework was. He proceeded to color in tractors, adding in the sun, sky and grass. He colored horses brown and tractors green... such a great job. The best part is how proud Cole was of himself and the fact that he was doing homework like Connor. He kept saying, "Good job Cole!  You did it!  You're doing homework."  Cole even starting writing out simple math problems 1 + 0 =. It was so fun to see the boys working so hard and more importantly, having fun. I hope the boys want to keep this up! I'm so proud of both of my boys- they are such amazing little love bugs.

Cole and his tunes

There is no other way to say it, Cole is one neat kid. No matter how often Pat and I are frustrated and frazzled, we more often find ourselves looking at him in awe, with amazement and pride. Cole is Cole and we love him so much for that. There are countless Cole-isms... if you follow this blog, you'll them as we go. What is just as amazing is to see how Connor catches on to these things. He has taken on the role of being Cole's big brother and chief watch dog, even though he's two years his junior. They are quite the pair and thank God they have each other. 

Cole has always loved music, but Connor has amplified that (no pun intended). Connor knows his way around iTunes better than I do. He knows the words to countless songs; mostly rock-n-roll. He sings with pride and even told me recently, "I sing so good mom. And I didn't even have to take lessons." You go buddy.  

Cole thinks the world of Connor and wants to do whatever he is doing. Now that the cold months are settling in and we are not outside as much, the boys have really been into music. They sit at our desk, sitting one behind the other in the same chair, singing songs, laughing and sometimes arguing over what song to play. It took about one sitting and Cole now can navigate his way on iTunes. I get such a kick out of him. He listens intently and sings just like we all do. Cole made me laugh tonight. He was listening to Joan Jett's, "I love rock-n-roll" and in it she shouts "oooowwww". Cole looked at me and said, "She's going to say ow (as in ouch)". He totally didn't get the context! Then again, his brother sings, "put another dime in the juice box baby".

He has quite the taste in music.... here are some of his favorites:

Makes Me Wonder- Maroon 5 (he sings it "you don't have a freezer")

I'm Yours 

Barbara Ann

Brass Monkey; yes the Beastie Boys

Anything by Johnny Cash

Music brings so many things to so many people. I'm so happy Cole enjoys music, just like any other little boy. Wait until the boys get Rock Band Wii for Christmas... that will be fun to blog about!!! Watch out Jonas Brothers, the Schusted Brothers are some tough competition.

 

Cole is "sad"

Thank you to all of the well-wishers regarding Cole's dentist appointment on Monday. For those of you who don't know, the dentist is one of the most challenging things we face with Cole. We've gotten him there a few times, but it was horrendous. They had to put him in a velcro straight jacket and we had to all hold him down while Cole kicked, screamed and through the biggest tantrum I'm ever seen. He was literally sweating when he was done and I was brought to tears. He had some cavities, so it we decided he would be put under at the hospital for the procedure. He did ok, but right when they woke him up, he tore the IVs out of his arm and tried running out. The next time we brought him to the dentist, he only went in the building because he thought he was going to see his other doctor (who is in the same building). When we stopped at the dentist office, he refused to go in and literally slammed his head on the floor and against the brick walls in the building. We can't drive down University Avenue in Fridley without Cole filling with anxiety and pleading, "no dentist today, NO DENTIST". This has brought us to where we are now.

For Cole's last two appointment "attempts", we've tried two different medications to calm his anxiety and make the dentist appointment possible. The first medication did not phase Cole what-so-ever. My dad, Cole and I tried to go to the dentist, but once we turned onto Able Street, he knew where we were going and through a tantrum in the car. As a mom, there are just some things you aren't willing to put your child through and this was one of them. We called the dentist, explained the situation and said we would make another attempt again soon. 

We met with Cole's Autism doctor earlier this fall. We told him about this situation and he prescribed a medication he was certain would do the trick. In fact, he said to give Cole 1 dose an hour before the appointment and if by chance it didn't take, to give him the second dose 20 minutes later. He didn't think Cole would even need the second dose. The doctor thought Cole would become very calm and nearly sedated. So yesterday I picked up Cole from school and we did the usual.... we drove his specific way so we could ride over the bridge and bumps (it only took me 10+ trips to get him to figure out the way he liked; prior to that the rides home were a tantrum-filled disaster). I gave him the first dose of medicine, conspicuously disguised in a "circle cracker". He ate it without hesitation- woo hoo!  After 20 minutes I knew the medicine hadn't done anything. I gave him the second dose and drove to my parents to see what would happen. Cole was happy as could be and as the time came to leave for the dentist, he hadn't calmed down or changed one bit. Again, we had to cancel the appointment. Only this time, I didn't even try to drive there. I knew not to. 

So we played outside (yes, outside) and talked with Grandpa until Grammie got home. We had a nice visit until all of the sudden Cole started to cry and say he was sad. This is very unusual for Cole. His cry almost always an "I'm really upset or frustrated cry", not an "I'm sad/alligator tears cry". At first I wasn't too concerned, but when it didn't stop after a few minutes, I looked at my dad and said, "I think he's having some kind of reaction to the medicine." Grandpa agreed. This crying went on for at least 90 minutes. Cole must have said 100 times, "Cole is sad. I'm sad." He would ask to snuggle and then walk away. He didn't know what to do, how to be consoled or control what he was feeling. It was very hard to watch. He was flushed from so much crying and he didn't know what to do. We tried to get him in the truck to leave but he wouldn't go. Grandpa Denny even found his John Deere tractor manual and that couldn't make Cole happy. 

Finally a trip to the Dairy queen is what got Cole in the truck.  He cried all the way to the DQ but was content once he got his purple cone (chocolate). The crying and sadness lessened as the night wore on and finally he fell asleep. 

It made me so sad to see Cole in this condition. So many things aren't easy and fair for him, this was just another one of those days. There are many times when I wish I could just trade places with him, for so many reasons. I just wish I knew what it was like to live inside his unique body. I love you Cole and thanks for being you.

There's a new man in town

As many of you know, our family was blessed with the arrival of Ethan Paul Mueller on November 14th. Tara, Jason and Elle welcomed this special boy into the world. It was so exciting to meet Ethan on Friday. You love him instantly and just want to cuddle him forever. I'm so proud of my sister and the beautiful family she has. I could post 100 photos of baby Ethan, but I promise to keep it to a few!

The day before Ethan's arrival was a day filled with many raw emotions. The anticipation of the baby's arrival was blissful. A new life to celebrate!! Yet our hearts were also heavy, as Pat and I had to attend the wake of our neighbor, Greg Knoll, who lost his battle with stomach cancer. Greg was 37 years old, with a wonderful wife and two darling little girls. He was a Minneapolis Police Officer and a member of the S.W.A.T. team. To say he fought his cancer with the same rigor is an understatement. Pat and I attended the wake and were amazed at the strength of Greg's wife, Melissa, and their two daughters, Neva and Morgan. It is hard comprehend what happened to this family. It's things like this which help to keep life in perspective. 

I was awaken by a phone call at 4:24am on Friday. I hadn't slept much... I was anxious, concerned and excited about the pending arrival of my new niece or nephew. I knew the baby would be delivered during the night and it was just too hard to sleep soundly. We've all had those nights. Whether you're going on vacation or you have a presentation at work, your internal alarm clock wakes you up each hour to make sure you aren't going to miss your flight or the bus. This was no different. I won't forget the pride in my sister's voice when she shared the news of Ethan's arrival. I was so happy and relieved. I was thankful for all of the details she shared. It's amazing what babies do to you. I loved him the instant my sister said, "I'm holding your new nephew". I was also thankful that I would be able to meet him later that day. 

On Friday, I brought Connor to the hospital with me while Cole was with his PCA, Haley. Connor and Ethan became best buddies instantly. Ethan showed off blowing bubbles and squirming around. Connor felt like the big man on campus, holding Ethan with confidence. I do have to tell you what Connor said when I told him about Ethan's arrival. I told Connor his name, etc. Connor said, "I wanted the baby's name to be Tyler. Maybe they'll change it when I come to the hospital." Kids say the funniest things. Connor loves Ethan and he loves his name. He even told him so in his baby book. 

The plan on Saturday was to play with the kids in the morning and then when Cole went with his PCA for a few hours, Pat, Connor and I would visit the hospital.  If you recall, Cole's wrestling partner (aka Daddy) was in Texas for most of the week. When Tiffany the PCA arrived to take Cole to the Mall of America, Cole refused to go. Cole was so sad and just wanted to stay with us. This doesn't happen very often, especially with Tiffany. She has known Cole for 4 years and he adores her. It just goes to show you how much Cole missed his daddy. He had what we call "alligator tears" and you could see the true emotion on his face. So we sent Tiffany on her way and went to plan B (with Cole, there is always a plan B and sometimes a C & D). 

Plus, Cole wanted to meet the new baby. A while after Tiffany left, Cole went in the basement. I thought he was in the playroom but instead he was carrying something back upstairs. I couldn't believe it... he went into our storage room and found the bouncy seat. He brought it to me and said, "Tara come over. Baby Ethan come over". Can you stand it?!?! How GREAT is that!!  

Grandpa Denny graciously offered to come to the hospital with our family. You see, Cole listens really well to Grandpa and things just go better when Grandpa is around. We didn't know how Cole would do in the hospital setting, etc. He knew one thing, there was an elevator ride in store and he couldn't wait! Cole did awesome. At first, he didn't want to sit near Tara and the baby. He was more interested in the vertical blinds on the windows and the fan in the room; Cole loves fans. In time, he went and sat on the bed with Tara and the baby. I tried to get a picture and I'll post the best one I have. I was so proud of Cole. He behaved like a gentleman and I'm so glad  he got to share this experience with us. It was worth it. He also asked to see Tara's belly and said, "Belly's gone. It will come back.".... does Cole know something we don't know?!?!?

Today we worked on how to spell Ethan's name. I spelled it for him twice and I bet when I ask him tomorrow, he'll know it by heart. He was finishing the letters as I spelled it for him today. He's so smart! Cole is so lucky to have his cousins. Connor and I counted them today and so far they are up to six. I grew up with one first cousin, so six feels like a herd to me. Either way, I know Cole's cousins will always watch out for him and love him no matter what. After all, that is what family is for.

Mac -n- Cheese Please!

As most of you know, Cole works incredibly hard. He attends Fraser Academy nearly all year long, Monday - Thursday. Each day before school, Cole goes to both Speech and Occupational Therapy. The mornings start out with Care Cab (a transportation company) bringing him to therapy and school. 

We are blessed to have a wonderful driver named Jan. Jan takes such good care of Cole. She always gets him to where he needs to go, she brings him treats on Halloween and patiently waits for us to actually make it outside to her van each morning. Today was no different. 

Cole has been into pancakes lately.... the ones with chocolate chips baked right in, and he always has to have three. Not today, the pattern changed. This morning it was macaroni and cheese. And he decided this right when the van pulled in the driveway. I tried hard to convince him otherwise, but there was no changing his mind. And frankly, at 7:30 in the morning I figured making the Easy Mac was the best way to start off this day. So Easy Mac it was. Cole loves to help make it. He grabs the bowl, pours the water and hits "circle, circle, 3, and start" on the microwave. He then hops up on the island and watches, just like usual. He's gotten so good at stirring in the "cheese". At first there was more cheese on the floor and counter than in the bowl, but now Cole is the official Easy Mac Master. No wonder he wants it for breakfast!!

Grandpa Denny picked Cole up from school today and boy did he have a treat in store for Cole!! Grandpa took Cole over to Keith the neighbor and showed him a "real live dead deer" (as Connor called it). Grandpa said Cole was very brave and didn't hesitate one bit to pet the deer hanging in Keith's garage. After Cole had enough of that, he told Grandpa... "See Daddy tonight". Cole was right. Pat has been gone in Texas since Monday. Cole knows the days of the week and he knew it was time for Daddy to be home.  He had his wrestling partner back! 

It was challenging getting Cole to calm down and get into bed tonight... he was WAY too excited to spend time with daddy. There was so much laughing, cuddling and tickling to catch up on. I am so thankful to have Pat as the father of my children. He truly is an amazing daddy. He is incredible with Cole; everyone around him notices it. Cole and Pat share a very special bond and Pat's duties as a father go way beyond what we thought they would be. I can't tell you how many times I tell myself how lucky Cole, Connor and I are to have Pat. I just wanted you all to know, too.

The Parmesan Cheese Mustache

Cole has such a sense of humor... something quite rare for a child with Autism. He loves to make you laugh. Tonight, he asked to play with his John Deere tiller and parmesan cheese. Cole LOVES anything John Deere, he always has. I think Grandpa Denny can take credit for most of that! Anyway, tonight Cole put the cheese on paper plate, took his tiller and ran it back and forth in the cheese. He's done this many times before. 

Cole has also been interested in men with whiskers lately.  He came up with the clever idea to put his face in the parmesan cheese and say to me, "Cole has whiskers!". Way to go Cole!!! What a great imagination. I took a picture and posted it here. I love how it looks like a goatee; something Cole's dad often grows!

Today was a good day. Pat is in Texas for work and Cole has done well despite missing his wrestling partner. The weather change is a big deal for Cole. Each morning he heads off to therapy and school, I put his winter coat in his backpack. I can't get him to wear it, but thank God he always comes home wearing it; hood and all. Once he got home, the jacket came off and Cole wanted to play outside. Connor and I put on our coats and headed out with Cole. He was already riding his bike in the snow-melted driveway without his coat on. The cold weather doesn't phase him. And he doesn't understand that a cold, misty night in November isn't the time for a leisure bike ride! I tried my best to tell Cole that the roads were slippery and that he could fall if we went on a bike ride. He didn't like it one bit and then decided to focus his attention on starting a bonfire. Again, the snow and mist had our bonfire pit and all of the wood soaking wet. Not a good recipe for a crackling fire. Rather than argue and fight, I chose not to fight this battle. I went in the house, gathered as much newspaper I could find, a pizza box and a lighter. We lit everything and it lasted for about 2 minutes. Thank God that was enough to satisfy him. He moved onto the swing and then decided he was cold.

Plus, it was time to see Alli. Alli is one of the amazing PCA (Personal Care Assistants) we have who work with Cole. Wednesdays are Alli nights. Cole LOVES Alli nights. He knows the routine and exactly what to expect. She takes him fun places like Chuck E Cheese (to play with the yellow balls) and to the YMCA to swim (she even takes Cole to the one with the Blue slide he loves). Cole lights up when he sees Alli and he always is "chirpy" (meaning he talks a lot!). 

After Cole got home, it was time to play and take a bath. He's been splashing SO much in the bath. I mean big splashes where the water falls over the side of the tub... the tile is coming loose and the molding on the floor is starting to rot. He gets the ceiling, too. So much that we need to get the popcorn replaced in many places above the tub. But I think I got through to him tonight. I was watching him and he said, "Cole likes splashy kicks!". I said, "Splashy kicks are for the Y, not the bath tub". He repeated it back to me and tonight, there was much less water on the towels I lay outside the tub floor. We'll see how tomorrow goes!

Cole is off sleeping now and I'm testing out my new "Cole and Me" blog. I'm not sure where this will take me, but I think it will be a fun and interesting way to share our daily experiences with you- both the good and the not so good. 

The best part of my day with him was when he looked at me before I carried him to bed. I put him up on our island and was giving him lots of kisses. For the first time, he looked at me and said "I love you" without me having to prompt him. I know he truly loves me. He loves everyone in our family and he knows how much we all love him. I'm so thankful for that. 

I'm also so thankful that tomorrow my sister Tara and her husband will bless our family with a new little baby to love. I explained that to Cole tonight and I think he got it. He said to me, "Tomorrow baby is all done in Tara's belly"... he is so smart.