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.