My little daredevil

Cole had quite an exciting Wednesday last week. The morning started off with a visit to the dentist. Part of me can't believe I'm actually typing this, but Cole had been looking forward to this appointment for months.

For those who don't know, the dentist and dental hygiene have been one of our most challenging things with Cole. It is hard to put the intensity of his dental fear into words. We have tried medications, picture schedules, Velcroe body jackets, books, etc. to get Cole comfortable with the dentist. It got so bad that we couldn't drive down the road that lead to our former dentist and the last time we got Cole into the building, he was so full of anxiety that he smashed his head into the inner brick walls of the building. We lost all hope until we got the recommendation of Dr King.

Dr King is a wonder-worker. Actually, the bulk of the credit should go to his amazing hygienist, Marlene. Wednesday was our third visit with Dr King. The first time, Cole went to the office and just looked around. He took a ride in the chair and that was it. At that time, the decision was made to put Cole under general anesthetic to clean his teeth and do any necessary work. The second time we visited Dr King's office, Cole got to perform a teeth cleaning on a teddy bear. He loved it and even sat in the chair himself. He let Marlene count his teeth and "polish" his two front teeth with her special tool. Dr King also got a quick exam in.

This time around, Cole was super excited. He could not wait to work on the bear and turn up the music in Marlene's special room. When it was Cole's turn, he sat right down and Marlene went to work. He let her clean, polish and floss all of his teeth. We had to take a few breaks, but he made it. When Dr King came in, he let him examine his teeth. The only time Cole had anxiety was when it was time to paint his teeth with fluoride. He didn't like it at all and we had to restrain him slightly. It stressed him out, but in the end he survived and had white shiny teeth to prove it! When I think back to our troubles related to this, I'm amazed at the tolerance and progress Cole has shown. The true test will be in September when he knows what he's in for. He's already told me, "only bear in September, not Cole". Something tells me he will do just fine.

That night, we rewarded Cole by taking him to Nick Universe at the Mall of America. Cole was beyond excited and so happy to have his family there with him. He, Pat and Connor went on almost every ride. It was so much fun to see Cole leading us around the park. He knew where everything was; from the Gatorade machine to the ferris wheel entrance and the mini golf course to Dairy Queen. It was like we had our own tour guide. The boys had a great time and I was amazed at how much they loved the "crazy" rides!! We would take Cole there a lot if it weren't so darn expensive- although it's worth it to see the grin on his face.

Tonight we told Cole about our upcoming vacation. Pat and I will be leaving Thursday for Ixtapa. It will be our 6th year in a row. We are incredibly blessed to have wonderful family members who help with the boys while we are gone. They understand how important this break is for us and just how much we need a reprieve from our often hectic home life. Cole was quite sad when he glanced at his picture schedule. He crumpled it up and said, "Mommy and Daddy aren't going on vacation. They are not going on a plane." Tears came to his eyes and he was truly sad. Slowly, as the night wore on and after slamming a few doors, Cole came to grips with the situation and appears to be ok. As much as he adores his grandparents, this coming week will be hard for him. He'll miss us as much as we miss him. Keep him in your prayers.

SURPRISE!!!!

We have had so much fun with Cole over the past few weeks. He's been in a great mood and now that we've gotten over the hump with the increased difficulty of his stand up, sit downs, things have been going well with him. He is talking in more complete sentences and keeps surprising us with his progress. He shows us so much love and affection. We know he adores us and his brother, Connor. The two boys are the perfect match for one another. Cole has such strong admiration for Connor. He looks up to him and wants to be a lot like him. Connor is truly amazing with Cole. I wish there is a way I could give him the credit he deserves. Connor is mature far beyond his years and the intuition, empathy and compassion he shows for Cole inspire me. It's so wonderful to see Connor enjoy Cole's increased play skills. There are so many more age-appropriate activities they play together. They are great pals and have so much fun playing the Wii, sledding, playing games, wrestling, skating and doing homework together. The other day Connor said to me as the boys were playing at the table, "Mom, I just love Cole's smile. See, there it is again." I mean seriously, how many brothers say that about one another. And this happens nearly every day with Connor. He has the most positive, supportive attitude when it comes to Cole and his Autism. It's amazing... he's amazing.

Cole turned nine on February 28th. I can't believe I have a nine-year-old. It seems like just yesterday when we were putting together his nursery and here he is wearing size 10 jeans and weighing over 70 pounds. Our journey with Cole hasn't been exactly what we signed up for. Someone said to me this past week, "it's like planning a trip to Italy but when you land, you are in Russia." It's still a wonderful trip, but it's not what you planned. In our case, we did spend close to 3 years in Italy and then one day, our tour guide said, "You thought you were in Rome? You guys have been in Moscow for three years. Does that explain why some things haven't made sense?"

We hosted a surprise party for Cole on Saturday. He had absolutely no idea. It was the day before his actual birthday, so he wasn't expecting a party that day, nor had he asked about one. We had all of our immediate family over and waited anxiously for his PCA, Alli, to drop him off. We crowded into the living room, hidden from sight. Everyone, even seven little kids, kept very quiet as Cole came home. He walked up the stairs and everyone yelled, "SURPRISE!!!!". Cole's reaction was priceless. He covered his ears and looked very shy and excited at the same time. He kept saying, "Wow... wow. It's a surprise party for me!" He took time to process what was going on. Cole would walk into his room and talk to himself about what was happening and then he would come out and show his excitement to the crowd. This process took about five minutes. He had so much fun and was so proud to turn nine.

We also had a lot of fun at hockey this week. Cole had practice on Sunday. He was so happy to have Connor skating with him. Connor did an outstanding job leading Cole through practice and the drills. It brought us so much joy to see them skating together. Cole is so athletically gifted and to see him skate so well after 6-7 times on the ice is impressive. Sadly the hockey season comes to an end next week. I'm in the process of signing him up for Special Olympics. I just need to decide which of the spring sports suits him best. In a few months, he'll also start Miracle League baseball and just this past weekend, the boys started an adaptive bowling league together as well. You can check out a neat video of Cole and Connor skating together at: http://www.youtube.com/watch?v=R-B2_Nfz1T0

We are looking forward to this weekend. Cole will have his first "friend birthday party". We invited 10 kids to come celebrate at the bowling alley with Cole. I can't wait to see his reaction and to see the joy on his face. He might not have a lot of friends, but the ones he does have are kids he cares for very deeply. We are blessed to have some very special cousins and friends in Cole's life.

Life is full of surprises. Whether you land in Germany when you thought you were headed for Peru or if a crowd of adoring people shout "surprise" to you, embrace life and all the unexpected blessings. We have been on quite a detour for the past six years and there have been countless things to be thankful for along the way. And yes, we'll get to Italy some day but for now Russia is where we need to be.

Look what I can do!

As the mom of a special needs child, I often need to remind myself of that reality. I see Cole as the little boy I adore and often look past his numerous challenges. I have to stop and tell myself that Cole has special needs. Yes, we live it every single day but at the end of the day, Cole is our son and the only thing that matters is our deep love for him.

I do admit, however, there are times when I assume there are things he can not do. And most often, Cole is able to prove me wrong. I try to "let out the rope" and give Cole the independence and opportunity to do the things boys his age do. Many times I find myself overly cautious and concerned for his safely and well-being.

A few years ago, an old school friend suggested we have Cole play in the special hockey league at Schwan's Super Rink. I quickly dismissed it. I couldn't imagine Cole learning to skate, let alone wearing the necessary equipment. Last year, Connor got skates for Christmas and began skating himself. Cole took interest to it and this year, we decided to give it a try. So every Sunday at 4:20, our family heads off to the Super Rink for MN Special Hockey. It has been the best experience. Cole LOVES putting on the pads and equipment. He has his own jersey (#19) and he loves going to see Coach Chris and his hockey friends. One week there is practice and the next is a game. It is so fun to see Cole skate around the rink. He skates really well and loves to go fast and slide on the ice. He's also known to shoot on his own goalie... oh well! It's so nice to have a safe environment for Cole and young adults with disabilities. Cole loves that we are there for him and he's made us very aware of that. It really made me stop and think. He wants affirmation and a sense of belonging just like we do. And it's our job to provide that for him.

Cole is also learning some age-appropriate play skills. He's been playing his favorite game, Guess Who, with us. It's a game where he has to ask questions about our secret person to determine who our person is. He does an amazing job asking questions correctly and asking questions that allow him to use his deductive reasoning. He has beat me fair and square countless times. It's fun because Connor loves to play as well.

We also had a close friend give a used Nintendo DS to Cole. He was so excited and with a little help from Connor, he figured out how to use it and now plays Mario Kart on the DS. It will be so nice to bring with us when we are out and about. The other day we brought Cole to Connor's hockey game. Cole got a little antsy, so we let him play the DS. It was nice to have something fun for him to do while watching the game. It also helps him sit still (and safe) in the truck. Thanks so much Mel!!!!

He's also mastered Mario Kart on the Wii. With the help of MAC and Connor, Cole has learned how to play Wii games and now gets 1st or 2nd place in nearly every race he's in. The boys enjoy playing together and it's so nice to have an activity for him that other kids his age are playing. And it's wonderful to have something fun to do inside during these cold winter months!

We are working on plans for Cole next school year. Right now, we are thinking he will attend McKinley (his home school where Connor goes) starting in September. He'll go there in the morning and then head to MAC for the remainder of the afternoon. Cole is SO excited to go to school where Connor, his cousin and friends go. Cole has never been in a main-stream school, so I think the part-time transition will suit him well. I'm starting the process of many, many meetings to get things underway. Lots of meetings, assessments, paperwork, more meetings and other important things. Managing Cole's care is a tremendous amount of work, but I get so much joy from seeing things fall into place for him.

Cole is really looking forward to his upcoming birthday. He will turn NINE on February 28th. We are so excited for him. He loves birthdays and surprises. We are planning a family surprise party for him and I'm in the midst of planning his first-ever friend party. I can't wait for that!

Speaking of birthdays, I just celebrated mine this past weekend. I'm so fortunate for all of the people who came out to celebrate with me. We had so much fun at Tanners and POVs. I shared a picture taken at Tanners with a few of my high school friends. It was such a fun night and made turning thirty-something a little easier.

Thanks for taking the time to read my blog. I even get requests and questions as to when I'm going to post another entry. I love to hear those comments. It's hard to know if people read this and to get feedback is very reassuring. Cole is so fortunate to have so many people on his team. We all have a part in helping him and it's paying off in a big way... after all, look what he can do!!!

Countless blessings

I hope you all had a wonderful holiday season. If you're anything like me, you love it while it's here but are just as happy to see it go. I like to get back into routine and reflect on the many blessings of the past year.

I'm most thankful for is being able to stay home with my kids. Yes, they are both at school during the day, but managing Cole's care is a full-time job alone. I love getting the kids ready, seeing them off to school and working productively throughout the day until my loved ones get home. It's something I have longed for since Cole was born and I'm extremely grateful for the past 18 months. I haven't take one hour of it for granted.

December brought a lot of fun to our house. As you know, there was a lot of snow over Christmas and Cole was in heaven. The boys and Pat spent countless hours plowing, shoveling, sledding and playing in the snow. Pat put the plow on our yard tractor so Cole could plow the snow. Pat would hop on his 4-wheeler and Cole on the "Husky". I'm not sure who was having more fun! Cole plowed our driveway (and the street) like a pro. During one snowfall, he was outside while Pat was working in the garage. Pat called me out to look at how perfect Cole had plowed the driveway. He had to turn the direction of the plow and everything. Pretty amazing!! I think I see a business possibility in Cole's future.

Christmas went pretty well for us. The snow saved us to some extent. Cole had an outlet for those times when being inside was too much for him. He loved opening presents and tore them open as fast as he could. He got a new John Deere backpack that quickly replaced his old one and many other fun things. Cole understood Santa and was super excited to see he left lots of presents by the fireplace. He had a great time visiting Santa a few days before Christmas. He sat by him, rang bells and talked to him about Christmas. It sure made us proud.

One great thing for Cole was learning to ice skate!!! His Aunt Katie took him to the Depot downtown where Cole skated for the first time. Not surprisingly, he picked it up with ease. After all, this is the boy who taught himself how to ride a bike without training wheels at age three. Cole and Katie skated for more than two hours and Grandma Eileen said she has never seen Cole smile so big. Just this week we signed Cole up for MN Special Hockey; a league for children with disabilities. He'll start next weekend and we can't wait for that.

We are seeing a new challenge with Cole. It goes without saying that he adores his brother, Connor. Now Cole wants to be doing everything Connor does. And he wants Connor to do whatever he wants to do. There are a lot of things they love to do together: play the Wii, wrestle, sing, play Candyland, Lincoln Logs and go outside. But there are many times when Connor doesn't want to do what Cole wants him to do, or furthermore, it might not be possible. Connor has his own life, places to go and friends to play with. Cole doesn't understand that concept and it's bringing on some very challenging situations for our family. I've talked to Cole's therapist at MAC and she is brainstorming ways we can work through this.

All in all, it's been a good winter and we're having a wonderful time seeing our kids enjoy it. It brings back memories of jumping off my roof into the snowbank with my siblings and skating in our backyard ice rink. It's so fun to be a kid and there isn't anything more rewarding than creating memories for your own children.. what a blessing.

Check out these videos. One is of Cole skating and the other is from the our visit to Santa.

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."