Friday, May 29, 2009

Life with Asperger's

Wow I had no idea that living with a child with Asperger's could be so interesting! Kolton is so smart about certain things. He has such an engineer's brain and can think things through 20 years down the road. Then he shocks you with the fact that he doesn't even know what the kitchen sink is, he calls it the cleaning bin!

His anxiety is the hardest part for me to deal with. He is so anxious about everything!! Whenever it is windy he thinks it is a tornado, when the fire alarm goes off when I am cooking he stands outside (with the dog, maybe the dog has asperger's). He is convinced that there are ghosts in our house and that someone will come and kidnap him. He is terrified of bees/wasps and can run like the wind when he sees one, yet he gets stung every year at least 6 times.

The social part of life is difficult for him! I remember taking him and his best friend Shannon to a baby reading and singing group when they were 2, what a shock. Every child in the room was listening to the stories and singing the songs and dancing. Kolton sat on my lap doing nothing except looking like I was torturing him. When he joined Beavers I watched while he just did his own thing, he would not actually talk to anyone or participate. He does have some friends, so long as they are willing to do what he wants to do. He seems to find the other kids who have the same obsessions as he does.

Then there is the obsessions! Kolton's first obsession was anythings to do with trains, this one lasted for the first 3 years. Then daddy introduced him to Star Wars!! The obsession was all consuming for the next 3 years, our whole life revolved around Star Wars. That was all he talked about, played with and watched. He would even hum Star Wars theme music in his sleep!! For Halloween when he was 4 I had got him a cool Buzz Lightyear costume (pre Star Wars). I insisted that he had to use the costume we had once he got obsessed with Star Wars much to his dismay. During the school Halloween parade people would go "there's Buzz Lightyear" and he would reply "I'm Luke Skywalker"!! These days his obsessions change but they are intense. His current obsession is Webkinz, there are 30 Webkinz now living with him in his bedroom!

Kolton's other Asperger trait is the non-stop talking about what he wants to talk about! He can't seem to grasp that he just talks over others. He has no interest in talking about what anyone else wants to talk about. He just doesn't pick up the social cues that people are giving him. He even talks all night long while he sleeps every night! This is definitely and area that we are focusing on with him!

Routine is so important to him! If the teacher changes anything at school it throws him off for the whole day! And if we do things differently at home he gets so upset. If we go on vacation he is fine for about 2 days and then he wants to come home and see his stuff, even if we are at Disney World!

I have learned so much from living with Kolton, patience being the main one! All of my kids are teaching me so many life lessons! I certainly can't talk to them about how great these life challenges are for teaching them and then get upset when life challenges me!!

Pamela

Wednesday, May 27, 2009

Gulten Free, Casein Free

So how do completely change the eating habits of a whole family without total mutiny?! Let me tell you, they were not thrilled with the changes I wanted to make and I was not thrilled with the idea of making the changes. In fact I was completely overwhelmed with the whole concept. I had no idea that gluten was in just about everything, even things like make-up, glue on envelopes, play-doh, it goes on and on and on!! Starting with one meal at a time was a sanity saver for me and it is not good to go cold turkey as it is too hard on the kids! Going to our local health food store was easy as they have a whole gluten free section and most large grocery chains have a health food aisle.

We started with changing breakfast for a week then adding in dinner and then lunches and then snacks. I did find some cool cook books for cooking gluten and casein free. Also Clean Eating and the Looney Spoon series also have a lot of great recipes without gluten or dairy. Larry and I also decided to eat the same diet so that we weren't eating forbidden foods in front of the kids.

Of course there was some very unhappy kids in our house to begin with, actually Kolton told me I was ruining his life. Chase was cheating whenever he got the chance and of course his friends at school thought I was torturing him and kept giving him the forbidden foods. His teacher could tell when he had cheated at lunch as he came back to class and just sat with his head on his desk! The easiest way to get the teenagers on board was to take advantage of the cheating. Whenever they cheated they usually felt horrible afterwards! Pretty soon they put two and two together and realized that cheating was not worth how it made them feel. Now they tell others how great the diet is and suggest that they should try it. Of course there are still temptations, but overall they stick to the diet.

As hard as it was to get this going, it got easier quickly. I also am thrilled when one of the kids teachers or activity leaders comes to us and tells us what a huge positive difference they see in my kids! I think it is worth a try, if it doesn't work then you simply go back to eating the way you did before!

Pamela

Tuesday, May 26, 2009

Research shockers

So where do I go from here, the Internet of course!! I started surfing anything I could find on the Internet and reading any books I could get my hands on. I was mainly researching Autism/Asperger's since I had the other 2 well managed, but I knew very little about Autism. During my reading though I noticed a pattern of talking about ADAH and Autism together. I also noticed there was a fair amount of overlap of symptoms. I started to realize that whatever I tried for Kolton I could try for the other 2 as well.

An easy first step was to add quality supplements. We take so many supplements we look like a bunch of 90 year old's with our pill cases. The one thing that kept popping up during my research was about diet changes. I dismissed it right off top because taking all gluten and casein (dairy) out of their diet seemed impossible. I also knew that with 2 teenagers, there would be a huge challenge to get them to cooperate. I also doubted that I could get Kolton to go along with the diet as he is one of the world's pickiest eaters!! However the more I read the more the diet changes kept coming up. I decided that we needed to give it a try but I didn't know how to start. The best information I found on changing the diet was on a website called www.talkingaboutcuringautism.org . There is a whole section on changing the diet slowly, it would have been hard to do it all at once. So we started our changes one meal at a time, breakfast was the easiest and supper wasn't too hard. Lunch was a challenge and of course the biggest challenge was getting Chase to not cheat whenever he could. Kolton wasn't as difficult as I thought since he must follow all rules and the diet was a new rule!!

Despite almost hoping that the diet wouldn't work so I wouldn't have to keep doing it, it was a huge success!! Each one had a different positive reaction which surprised me. I always thought Kolton had bad rough skin, but with the diet change his skin went smooth and he stopped itching all the time. The dark circles under his eyes disappeared and the biggest change was that he started looking us in the eye for the first time!! Ashlynn used to have headaches almost daily and they disappeared! The biggest shock for me was that Chase came back from space and now he talks constantly and he is completely present. We also were able to get him down to the lowest dose possible of his medications!!

We have been on the diet for over a year now and it is just a part of our life. I'll tell you more later on how the teenagers got on board with our restrictions! They even tell others now about the diet and suggest that they should try it too!

Pamela

Monday, May 25, 2009

History

I am the lucky mom of three lively high energy kids!

Ashlynn is 16 and was diagnosed with ADD when she was 10.
Chase is 13 and was diagnosed with ADHD when he was 7.
Kolton is 8 and was diagnosed with Asperger's when he was 7.

When testing suggested that Ash had ADD we went ahead and got chase tested at the same time since he obviously had the same lack of focus combined with literally climbing the walls and anything else he could climb! I knew nothing about ADD and ADHD at the time, just that I thought I was a horrible mother since it seemed like I couldn't "control" my kids!! I was such a quiet well behaved kid that it was a huge shock that they were not the same as me. Ashlynn simply could not do her school work and Chase was constantly in trouble at school! I never saw the inside of the principle's office in school, but he seemed to be there everyday. I remember looking in the class one day when he was in grade 1 and the whole class was working quietly and Chase was crawling around on the floor driving his eraser under everyone's desks.

After being diagnosed we decided to try medication despite protests from extended family, you would have thought we were giving them a lobotomy!! Within half an hour of their first pill it was like a miracle had happened, even Ashlynn told me how wonderful it felt to be able to sit and do her homework. Homework that day took half an hour, it normally took 2 to 3 hours!! Chase stopped spinning, literally and there were no more trips to the principle's office!!

The ease of taking a little pill everyday was so easy that we settled in and started just enjoying life! There were some small issues along the way with Chase, the Dr. kept increasing his medication, which I didn't like but it seemed necessary to keep him on track at school. Ash stayed on the lowest dose possible and was doing well.

Then Kolton started school. We knew he was quirky as we called him but school really emphasized his differences. He had a major health issue at 3 and was hospitalized for over a month and had 3 operations. For a kid who would not take Tylenol or wear a band aid, this was a major trauma, so we put his differences down to this experience. We got through JK and SK then grade 1 happened. Going to school everyday seemed to overwhelm him and he did not like all the distractions in his class. He would actually ask to go work at the office so he could focus. So we took him to the Dr. to see what the issue was. The pediatrician jumped right to ADHD and prescribed medication. This didn't seem right to me since I already had a ADHD and they were very different kids. Our family Dr. who knows Kolton well as she is at our house weekly to scrapbook and his teacher both came to me and suggested Asperger's. So I started my research and Asperger's seemed to make way more sense than ADHD. After extensive (and expensive) testing it was confirmed that Kolton did have Asperger's.

With this third diagnosis I really started questioning what the heck was going on in our family!?! At the same time all this was happening we began to really worry about Chase because while he wasn't getting in trouble at school and he was getting his school work done he had retreated into himself. There was a body moving around the house but there was no life in that body, there was literally a shell! So I started intensive research and made some changes that had a huge impact on each of our kids and on us!!

More tomorrow on what I found and what I tried.

Pamela