Wednesday, December 9, 2009

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.


Monday, November 9, 2009

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.



Monday, October 26, 2009

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."

Wednesday, September 30, 2009

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?

Monday, September 14, 2009

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.

Tuesday, September 1, 2009

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?

Thursday, August 20, 2009

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."

Sunday, August 2, 2009

Hello there pretty girl





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

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

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

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

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

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

Love you Cole, you're my guy.

Saturday, July 25, 2009

October in July?






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

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

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

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

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

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

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

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

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

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

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

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

Monday, July 6, 2009

4th of July, Cole's favorite holiday





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

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

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

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

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

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

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

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

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

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

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

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

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


Wednesday, June 17, 2009

Lost and found- twice in one week!





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

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

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

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

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

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

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

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

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

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

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

Sunday, June 7, 2009

Parade season






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

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

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

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

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

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

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

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


Monday, June 1, 2009

PROGRESS... my favorite word in the English language






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

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

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

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

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

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

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

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

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