Some GREAT news!!!

How is it that SIX MONTHS has flown by since I've posted??? And how do people find time to blog once a day, or even once a week!?! I have so much to update and I know I won't be able to fit it in, so I'll just have to post again soon.

Ever since July 1, 2004, the day of Cole's Autism diagnosis, Pat and I take things one day at a time. Selfishly I'll admit, it can be daunting to look far into the future and envision what lies ahead for Cole and ourselves. I try to spare myself the anxiety, stress and fear of the unknown.

Realistically, we are too busy putting out fires. We simply don't have the luxury to plan things far out, guarantee we can stick to commitments we make and 'going with the flow' is not part of our vocabulary. Don't get me wrong, we try very hard to make our lives as "normal" as possible, but we also know Cole's limits. Not everyone understands the decisions we make and that's ok. We are getting better at saying no sometimes, leaving events early or having 1-2 of us stay at home. We are figuring this Autism thing out as we go, and even though not everyone understands it, Autism is the filter for EVERYTHING we do and it impacts literally every facet of our lives.

I was looking on the MN Autism Society website this week. As I was scrolling through, I came upon this... "1 in 88 children being diagnosed each year, our quest to find what works for our one child seems as daunting as the autism-related Google results page. Often, the formula for more “good days” is found in a combination of therapy, social skills training, education on safety, and the commitment of a caring community." A few words caught my attention: more "good days". It brought me back to the day Cole was diagnosed. Our Dr told us our lives would never be the same, that we would grieve this diagnosis like the death of a child and the most important job we had been assigned was to advocate tirelessly for Cole. He was right about all three.

In taking things one day at a time, our mantra is to have more good days than bad. We use all of the tools in our arsenal but many days, it just isn't enough. Cole has other plans. Pat and I fight this "war" every day, as any parent would. At times it seems our plan of attack works really well and at other times, Cole drops a grenade and everything blows up. Lately we've been dealing with an increase in his aggression. It's happening at home, school and out in the community. Sometimes we can see Cole building and we know he'll become aggressive but other times, it comes out of nowhere. When Cole is in a "mood", Pat doesn't like to leave me alone with Cole. He's nervous Cole will hurt me. Cole is 11 years old but he's much bigger. He's growing out of size 16 jeans, wears a size 7.5 shoe and a few months ago weighed almost 110 pounds; most of it solid muscle. When you combine that with frustration, lack of coping skills and inability to reason- it can be really tough. We are working closely with school and an in-home Autism specialist to address his aggression and other behavior concerns we have. Pray for Cole. We need to get him back on track. He needs his troops behind him.

On the bright side, we received some fantastic news today. Cole's amazing Case Manager got confirmation today that next year our family will receive a one time grant to do up to $40,000 of environmental modifications to our home. This is HUGE!!! I will try to post pictures but many of you know the Cole has done quite a bit of damage to our home. We have a person who specializes in assessing the damage and designing modifications and/or repairs to prevent further damage. More news to come on this!!

Here's the quick update on our family and what we've been up to...

In September I went to Cape Cod with my mom, sister, sister-in-law and her mom/grandma. We rented a house for a week and toured the area. It was a wonderful time. We loved Cape Cod and thoroughly enjoyed our time out East.

We also went back to the Noble Family Farm this fall. The boys had a blast, as always. This time it was even more exciting, as we surprised Cole the morning we left with dune buggies. Noble's were having them repaired and we had them parked in the driveway to bring down with us. Cole's reaction is something I'll never forget. He was super excited to "drive fast and take chances".

Cole was thrilled when we bought a new John Deere riding lawn mower. He literally drove our other one into the ground. He loved going with Pat to bring it home. He got to see the back area of the store and the salesperson Mike gave him a baseball cap. And of coarse when we got it home, it was Cole who showed Pat how and what to turn on so we could get it off the trailer. :) I can't wait for tonight, the plow attachment came in so Cole will be in for another treat. Yes, he plows our snow, too!

He loves Zamboni's. I took him to open skate this past weekend. The driver noticed Cole and waved at him at every turn. The driver even turned on the lights and honked the horn. Cole thought it was the coolest thing ever. And again, he knew every move the driver was making... "it's time to use the board brush, he's got two more circles left, etc."

In October we took the boys on the Osceola train. It's a really fun thing to do with your family. The drive to Osceola is pretty and there are nice places to eat lunch. Cole loved snuggling with Pat on the train. We saw Eagle's nests, rode over a high bridge and ate treats. Cole improved significantly from the first time he rode. A few years back, he lost patience while waiting for the train and (in front of a crowd of people), started hitting his head off the hoods of people's cars.

The boys loved Halloween. Pat was out of town, so it was just me. Thankfully a few of my family members came over. We ate soup and got the boys ready. Cole was Batman and Connor was a zombie. Cole was all about the tractor and trailer. Grandpa hooked it up and off we went. Grandpa started out driving but after only a few feet, Batman took over the wheel. He navigated through the streets and only went to houses where he knew they did not have pets. Connor didn't complain one bit as he hung out with Cole while we passed a trailer full of the neighborhood kids. He stayed with his brother and only after Cole was ready to head inside did Connor join his friends. I didn't even have to ask him to hang with Cole. In Connor's mind, he was with his best friend and that was all that mattered. He's so good to him.

We enjoyed a nice Thanksgiving at the Schusted side of the family. Cole lasted about 4 hours, which was big for him. He loved helping Grandpa Al carve the turkey. Things ended on a sour note, as he got anxious toward the end and punched Connor hard in the back for no apparent reason. It left Connor in tears, with a big red mark on his back. Cole felt bad about what he did, so he ran upstairs and stared slamming doors, yelling, etc. Needless to say, we left after that. We are thankful he lasted for as long as he did. We got to catch up with family and enjoyed looking through the family tree album Grandma Schusted made for all of her kids.

As for the rest of us, life has been good and quite busy. Pat's job continues to go well. He's been traveling a fair amount to many areas around the country. We were excited to be invited to attend a Regional Leaders Meeting in Grand Cayman. Pat and I will go there for a week in February. We honeymooned there over 15 years ago and haven't been back since. It will be nice to meet some of the out of town people he works with and visit a place so special to us.

Connor has been doing great! His football team won their second consecutive championship game this year. Pat had a fun time being an assistant coach. Pat ran the defense. The team allowed only 41 points scored against them in 12 games, 10 of which were shutouts. It was great season. Now we're moving into the competitive portion of the gymnastics season (Connor trains year around). Connor moved up to level 6 this year. He's excited about the challenges that lie ahead of him and has been working hard to learn the advanced skills. When spring rolls around, Connor will play traveling baseball this year. He tried out, along with 35-40 other kids and made the top traveling team for the city of Blaine. 12 kids made it and he was one on them. We are very proud of him and look forward to that as well. Connor does very well in school and likes to work hard at it. He loves to read and excels in math. He also got invited to try out for a special district wide choir but couldn't due to his gymnastics schedule. Not sure where that talent came from, I can't even sing in the shower!!

I'm doing well. As I posted in my last update, I recently went through training to become a Group Fitness Instructor. It's so much fun and a great personal challenge for me. I'm teaching three formats at the YMCA: Bootcamp, Ripped (a weight and cardio class) and Latin Hip Hop. It's been a lot of work to get up to speed on three formats, but I love it! I wish I would have done it years ago.

Thank you for taking time to read my blog. It means a lot to me and I hope you come away with a better understanding for what it's like to live with and parent a child who has Autism. I also hope it put things in perspective and gives you an even greater appreciation for the little things in life. Happy Holidays and God bless.

Cool stuff happening!!

What a wonderful spring it's been!! The weather has been delightful and it's enabled us to get a jump start on all of the fun activities that come with the warmer weather. If you get one thing from this post, please watch the video of Cole on the boat. It's priceless. You may have to copy the url into your browser. Just look at how happy our boy is!

BOAT RIDE VIDEO:
http://www.youtube.com/watch?v=E9eB3hI8FHU&list=UUPidCBg9jDknIsedb8GXEow&index=1&feature=plcp

Cole is absolutely pumped that spring is here! He has been spending hours outside- riding his new bike, mowing the lawn, watching the neighbors mow the lawn, taking trips down to Grandpa's to (you guessed it...) mow the lawn and he's already had a few rides on our boat. Cole is 100% an outdoor kid. He's happiest when he's outside, no matter what the weather and no matter what he's doing. It's been fun to see him greeting the neighbors as they walk by and seeing the gigantic smile on his face when Pat takes him for scooter rides. Cole has also become our personal weatherman. We've had our share of storms this spring and Cole is the first one to make us aware. He's come a long way. He used to be so afraid of storms. Now he has a little anxiety but he's more concerned about getting to the basement and finding candles, just in case.

As I said, Pat has taken Cole out on the boat a few times already. Pat took some video of Cole driving the boat- you have to see it. Pat has also been excited that Cole seems to be enjoying fishing. Just last week they went to Coon Lake and Cole himself caught 3 sunnies and a crappie! For those of you who know Pat, it had to be the highlight of the month for him. Another son who loves fishing! Now we just need the water to warm up a bit so we can start tubing and swimming in the lake.

Earlier this month, Cole had his spring concert at The MAC School. Each grade (4-7) sang a song and then they all sang one together. Cole's class sang "Bare Necessities". We thought Cole might do pretty well, since he requested we put the song on his iTouch so he could practice. Cole did fantastic!!! He even wore a shirt with a collar and buttons! I'll put up a link to the video on youtube so you can check it out. It's amazing to see how great these kids do, especially when you consider they all have some form of Autism. I was so proud of Cole. In the past, he's been more concerned about the microphone and even goes up and starts making sounds into it. This time, he did exactly what he was supposed to do and he looked so darn handsome. It's moments like this when we know, without a doubt, that he is in the right school.

SPRING CONCERT VIDEO:
http://www.youtube.com/watch?v=ZJfWVux2gBY&list=UUPidCBg9jDknIsedb8GXEow&index=1&feature=plcp

Cole was so excited for his Uncle Brendan and Aunt Brittany to move to their new home in Plymouth. I took Cole over to visit a few weeks ago. He looked inside for about a nano-second and immediately asked if he could mow. Lucky for him the grass was long and he got right to task. He loved having lunch at their new house and talks all the time about having a sleepover. He told me he's going to sleep downstairs with Connor and go to Skyzone... we'll see! Speaking of Skyzone (indoor trampline park), I took Cole to Zero Gravity yesterday. It was so rewarding to see he and Connor having a great time. Cole behaved so well. He fit right in and had a really fun time. He jumped and ran around, even asked me to video tape him. When he was tired, he would come snuggle me and tell me he loved me, then he was off to jump again. This was a true reminder of the dramatic progress he's made. The simple things that are easy for most families and finally becoming possible for us, and it's really exciting!

Another fun thing we did with Cole was the light rail. Pat took Cole this weekend on the light rail, down to the Mall of America. Cole loves both of those things. He knows the way around the MOA like the palm of his hand. The highlight from this trip was getting his picture taken with a few characters from Spongebob!

As for the rest of us, things have been going well. Pat's job is going great and he's slowly not having to travel quite as much. The boys are really good for me when Pat's gone, but Cole of coarse prefers to have daddy at home with him. Pat has been having fun being an assistant coach on Connor's baseball team and teaching Connor how to pitch!

Connor has started baseball. His team is 3-1 and he's loving the challenges that 10U bring. The kids pitch, you can steal bases and the kids are hitting the ball harder. He's still doing gymnastics. This summer he will train for level 6, another step up from where he competed this past year. He had another great gymnastics season, placing 3rd in the state and 18th in the region, during his first year at level 5. He won state in both parallel bars and pommel horse. At regions, he was third overall in p bars!!! Not bad when over 120 kids competed! We love that he participates in something unique from many of his peers. And the sport provides him with so many great skills and personal development, discipline and work ethic. Connor had track and field a few weeks ago. It was a really warm day- over 90 degrees! It was so much fun to watch. I love the tug of war. Connor was jazzed. He wore his baseball gloves and if you look at the picture on here, you can see the intensity in his face.

I've been doing well too. I feel like I'm cramming to get tons of projects done before Connor is home for the summer. I can't wait for "100 Mommy and Connor Days". We have all kinds of grand plans and love having the summer to spend so much quality time together.

I have some exciting news. I made the decision a few months ago to become certified as a Group Fitness Instructor!! It's been something I've wanted to do for several years and like I told myself, "I'm not getting any younger". Just this past weekend, I completed both my Turbo Kick (kickboxing) and Hip Hop Hustle (cardio dance) training. It was rigorous and tough to do the trainings (9a - 5p) for two days straight. But I made it and I passed both! I applied at the Andover YMCA this week and hope to get the ball rolling soon. Now it's time to practice, practice and practice some more. Wish me luck!

Hope you've enjoyed the highlights of our spring. It's been great so far and we only hope the summer brings many wonderful memories.

Autism- the positive side

Happy Autism Awareness Month!!

I invite you to join me in spreading awareness about this mysterious disability. My hope is for you to pause a moment before making judgement on a parent or child. If you see a child acting in a non-neurotypical manner, please resist the urge to make judgements or assumptions and instead pause to consider it might be a family struggling with the numerous challenges of Autism.

This disability can be very daunting, humiliating, puzzling, frustrating, exhausting and sad. But it can also be rewarding, amazing, insightful, comical, empowering and joyful. I heard a great quote today from a girl on the Ellen Show, who has overcome many tragedies in her life... "There are tough things that happen in life. You don't always have a choice in many of them, but you do have a choice as to how you react and grow from them." You're right, if we could turn back the hands of time and change something so Cole would not have Autism, of coarse we would. But that's not possible. What is possible is the fact that anything is possible. Every day Cole does things that we never thought he would. Today he was trying to tie his shoes and learning about appropriate ways to show affection and who he can show affection to. Last week, it was learning to use hand brakes on his new bike. In a few years, maybe it will be making change for a dollar or reading a chapter book. Who knows....

We stay focused on the many blessings Autism has brought to our lives and doing everything in our power to make Cole's life the best and happiest it can be. And he IS happy.

Today during my visit to him at school, his therapist told me he is "the social butterfly" of the school. Cole knows everyone, and everyone knows Cole. He greets everyone he sees and has a nickname for each person. Usually he drops the first letter of their name, so Connor is "onnor" and cousin Cooper is "ooper". he he he. I just had a conversation with my Dad about this a few days ago. He was so proud of how Cole was able to attach the tractor trailer to his lawn tractor, mow the lawn and then back it up into the tight parking spot by the shed. My Dad wasn't home to see Cole put the tractor away and when he got home, he thought someone helped Cole put everything back in it's place. But no, Cole had done everything all by himself (park the trailer/tractor, put the key in the right place and lock up the shed)! Cole is so darn cute on that tractor. He wears his headphones for protection and gives us a huge smile and a big thumbs up. My Dad and I both agree that Cole is finding so many things he enjoys in life and he truly is a happy, happy kid. He is passionate about his interests and the people he loves. My are we blessed.

It doesn't help that Cole has the most incredible, loving and compassionate brother in the world. And honestly, that's an understatement. Connor is so proud of his brother. He's protective of him and at such a young age, already has concern for Cole's future. In fact Connor just told me a few days ago that he's going to live within one hour of Cole when they grow up, "so I can spend time with him and sleep in his bed with him one night every week."

I have one more story about Connor that I have to share. Last Friday, Cole earned a day at home from therapy due to good behavior. Connor had school that day, so it was just Cole and I at home. While Connor was getting ready for school in the morning, I asked Connor if he would like for Cole and I to come and have lunch with him at school. Connor was so excited in his response and immediately said, "YES!!!". I reminded Connor that Cole might have a hard time in the chaos and could act silly or inappropriate. I then asked Connor again if he wanted us to visit. His response: "Mom, he's my brother and I love him. I WANT him to come to see me at lunch. Can I ask him myself, please!?" So I let Connor ask Cole, hoping Cole would say yes. But he didn't. Cole takes everything so literal and when he earned a day off from school, there was no way he was stepping one foot into any school. Connor was disappointed and made me promise to keep asking Cole all morning. Sadly, Cole didn't agree. Maybe next time.

We've done some fun stuff this winter. In January Pat and I took Connor to Orlando, FL for a gymnastics meet and mini-vacation. It was Connor's first time in an airplane, so he was really excited! Connor did well at his meet and then we had a three days to spend at the parks. The three of us had so much fun. Pat and Connor went on tons of rides together and there were very few lines. The weather was perfect, so we got to swim and hang out at the pool as well. Connor's favorite park was Epcot. He loved seeing all of the different countries. We went there twice! While at Universal, we had to get our picture taken with the characters from Monster's Inc, one of Cole's favorite movies.

Pat and I took our eighth trip to Ixtapa, Mexico in February. We rented a wonderful condo right on the beach. It was such a nice week. We ate at fantastic restaurants, read books by the pool and walked the beach every day. We even ran the beach five of the mornings we were there and I took a 2+ hour walk with a group of people down to the marina to see the alligators. Pat went deep sea fishing. He lucked out and caught a huge sailfish. It was over 8' tall! We are incredibly fortunate to have this quality time together and to have family and friends who generously help out while we're gone.

The first night of our trip was a little stressful, actually quite stressful. It's a long story, but when we called home to see how the boys were, my parents said Cole was in a lot of pain from getting his finger nail slammed in something. Cole would not say what happened and none of the people who were caring for him that day saw what happened. We called again later in the evening and the situation had gotten worse. Cole's fingernail was completely black and it was red and swollen. We could hear him wincing in pain in the background. My parents were doing everything they could think of to help Cole. (he refuses to take medicine). Cole let them ice his finger and elevate it. And Connor lovingly convinced Cole to pout a Band-Aid on it. Cole NEVER wears Band-Aids!!

Nothing was helping and Cole was in a lot of pain. He kept crying and saying, "It's burning. My finger is broken." It was heart-wrenching for all of us. This went on for a few hours and finally my dad decided to take Cole to the ER. Only Cole refused to go. So my dad called a local police man who is also a close friend. The police officer came over at midnight and tried to calm Cole and look at his finger. He tried to convince Cole to take a fun ride in the police car, but Cole refused again. In the meantime, my mom called the nurse's line and they said if more than 1/2 the nail is black, he should be seen by a doctor.

The police officer suggested to have the EMTs come look at Cole's finger. There is no charge for an ambulance to come to the house. So that's what they did. At 12:30 at night, the ambulance shows up and checks out Cole's finger. They told my parents it wasn't broke and there was not much that could be done. It didn't help with the pain, but at least we knew it wasn't broken. That night, it took Cole a long time to fall asleep and he woke up several times throughout the night in pain. The next morning, he slept in and didn't leave for school until 10am. He woke up and said, "my finger is all better!". And it pretty much was. He ended up losing his finger nail, but took it really well. He's so brave.

We also had a successful trip to the dentist. For the first time ever, the hygientist was able to do 75% of a full cleaning on Cole's teeth! Cole actually cooperated and willingly went into the velcroe blanket. It took two people to do the cleaning and by the end Cole was frantically and aggressively getting out of the blanket, but it was a success. He thought the cleaning tool was like a zamboni on his teeth! Check out the video...

http://www.youtube.com/watch?v=4QpbtAN-J08&feature=youtu.be

There is so much more I could update but instead I'll post again soon! Please remember April is Autism Awareness Month. Like I said before, please find it in your heart to have more compassion and understanding for these wonderful people. They love life just like we do and want many of the same things, it just doesn't come as easy for them.

retarted- what it really means

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




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

Peaks and Valleys

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

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

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!