So much to do, so little time

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

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

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

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

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

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

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

My pillar of steel

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

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

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

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

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

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

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

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

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

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

Train and some other fun stuff

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

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

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

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

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

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

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

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

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

Who gives a s#&t?

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

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

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

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

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

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

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

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

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

A few surprises

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

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

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

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

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

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

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

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

A wild ride!

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

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

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

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

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

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

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

Another cabin trip

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

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

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

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

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

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

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