Random thoughts from this week

I look at Butters and see so much. I see how brilliant he is and how he can be social and sweet to his sister. Then there are the days I come home and he just wants to do his own thing. He goes back into his own world and just wants to be left alone. I try to interact with him. I try and play with his cars with he and his sister but sometimes its just not enough. His world is filled with hockey I'm sure because he always looks at me and says 20 minutes. This is the length of a period and he loves the game. He randomly tells me “He shoots he scores!” sometimes and all I can do is laugh.

He had an accident at preschool the other day and had to use his backup clothes. I was embarrassed for him. He had for some reason been up since 2am that day and just couldn't go back to sleep. I emailed his teacher the same night and apologized for it since it rarely ever happens.

He panics now more in stores. I almost don't want to take him sometimes because he gets so upset if we go out of order. He has OCD tendencies and unfortunately they can manifest themselves in public. We get the looks all the time. Like he is spoiled and that we just don't discipline him. You know because I want my son to have meltdowns like that in public. We went to Ikea once with him and it was bad. Peanut was being pretty good but all the new sights and sounds just freaked him out. Luckily at the end he discovered Ikea meatballs and it was all good.

His favorite place in the world right now besides home is the gym. He started a new class last week and the staff was wonderful. They and the other kids asked him to come back to the group. He did wander at times but eventually returned to the group. He loves it there because he really doesn’t get in trouble for just being himself like he might other places. He even did a 3 hour time at night without us and had so much fun!

I think right now I'm just struggling. I know he's doing well in school and at the gym. I read too much. I think too much. Yeah what's new. I'm an engineer. That's my job. I want what's best for him but constantly find myself worrying about him.

I know this is just a random stream of thoughts but its what has been going on this week with him and in my head.

Mainstreaming

The first one I'm tackling is mainstreaming. The question I've heard and been asked myself is if Butters is mainstreamed. Basically the term mainstream refers to having a child in a normal classroom or activities.

For us the decision has been easy for the moment. Right now Butters is in a special needs preschool through our local elementary school and in a mainstream gymnastics class at The Little Gym.

In preschool he works on a variety of things such as social, fine and gross motor skills, speech and basic language. During the 2.5 hours he is there Monday through Thursday it looks like a typical class room. They have free play, station tables, circle time, snack time, all of the things you would find in a normal classroom. The difference with his classroom is that there is one teacher and 2 assistants with 10 kids. There is also a speech pathologist and occupational/physical therapist that come in a couple of times a week and help kids with very specific tasks. After his first week he was coming home singing parts of songs and very happy overall. Also the teaching staff has been great. They answer emails and keep us updated with what they are doing in the classroom.

At the gym he works on gross motor skills and socialization. One of the things they do at the gym is encourage him to work with the other kids and be part of the group. He works also on how exactly to interact with other kids his age. They make it ok for him to wander at times but always ask him to come back to the group and praise him when he does return and work with the other kids and instructors. He will even be going to camps a couple of times a week this summer to continue to work on things.

One thing I have to say about the gym is we absolutely love the staff. He has gone to both a gym in Alabama before we moved and the gym in our current town. Both locations have been trained in autism and understand how these kids act. Its been very important for us to get him active and involved with a program that understands his quirks and works on a variety of things. The gyms have been wonderful not only for him but also Peanut. She has been going a little longer than he has (due to the seizure incident) and also loves it.

So this is our approach to mainstreaming right now. I feel that he is doing great in a mainstream gym setting and special education classroom for preschool. For him its probably the best of both sides and will help him progress over the remainder of the school year and into the summer.

How we got here

Meet Butters and Peanut

About 6 months ago everything we thought we knew about Butters was turned upside down. We always figured he was a little different in some way but nothing much. Sure he had an unusual obsession with numbers. By the time he was 2 he could count to 100. By the time he hit 3 he was taking bath tub foam numbers and arranging them in 6 digit combination and could tell you what they were with no problem. We just thought that he loved numbers and wanted to let him explore what he was interested in at the time.

At Peanut's first birthday party someone mentioned that we might get him evaluated by a speech therapist. So we agreed to and made an appointment with the one in our peditrican's office. The test showed results much worse than we thought. His speech was on the level of about an 18 month old. She also said the word we never thought we would hear. Autism. She thought he had a form of autism but wouldn't elaborate any further.

From here we met with an occupational therapist (OT). The OT was wonderful and the news she gave us was similar. She stopped in the middle of the evaluation and said how intelligent he was and how she thought he had Asperger's Syndrome just due to his high IQ and motor skills that were pretty low. When she met him he was also rated as age adjusted as an 18 month old. She also observed that he was having drop seizures. We thought he was just clumsy but turns out we were very wrong.

Talk about a kick in the gut. Yeah we went from thinking that he was just a little speech delayed to haveing autsim and seizures.

Then there was the psych evaluation. She actually said that our lifestyle caused all of this and he just had ADHD. Do I even need to say how crazy we thought this woman was?! Lets just say we never saw her again.

After the seizure mess Butters had a 1 hour and 24 hour EEG done. Both showed nothing much and after discussing things with his peditrican it was decided to do nothing and his doctor thought he would grow out of it in a few years anyway.

After he was medically cleared he started classes at The Little Gym. This was a different kind of therapy for him. While we were still working on fine motor skills with his OT, the gym provided a place to work on gross motor and social skills. It also provided a great place to learn from other kids. After just over a month he was following directions most of the time and even listening to the teachers.

Then we got the offical word we were moving. We still met with the local school system and tried to get him in, but after the inital evaluation we were going to have to travel 20 minutes one way to take him to school. The whole system just frustrated me and we never even did his IEP.

Now that we are settled in WA things are getting better. He still goes to The Little Gym and loves it. All we look for now is slight progress every week. We celebrate increases in language and interaction with other kids and even his sister!

Butters has autism.

He has a form of it that most people we meet have no idea about. We are increasingly looked at when out and has one of his meltdowns in public. His brain is in overdrive and lately the outbursts and being scared has come far more frequent.

But you know what. Butters is normal to us. One of the things that W and I have strived for in all of this is not to loose sight of is to Always treat him as normal as possible. To us he is still a normal  4 year old. He throws tantrums, plays games, and even sometimes does things to his sister that we wish he wouldn't do. He also gets his share of time outs like any other preschooler.

But there are also times when we have to slow down. We have begun to take notice of the times that he needs more reassurance. Times when he just needs an extra minute or two to understand what s going on.

With the move, and diagnosis all within 6 months at times its been overwhelming. But somewhere in the middle of it all I think W and I stopped caring. Not really stopped caring but just stopped worrying about it all. Yes we have challenges that most families don't. Yes he has increasingly more odd outbursts and unexplained (to most) meltdowns.

I'm starting this all during Austims awareness month. Also my personal blog has become more a place for how the kids in general are doing, but my goal here is to focus on autism and how it affects us. 

Some days are great, some are unbelievable frustrating and some just make me want to cry. But thruough it all we just want the best for him. Hopefully you will be able to laugh, cry and somehow relate to us as we continue through the adventure of life with Butters.

The cast of characters

Before I go into too much depth on the real first post for this blog I'm going to give you a quick cast of characters.



W- my husband and partner in crime. Full time stay at home dad, part time photographer and lover of hockey.



V- myself. Work full time as an engineer, play woman’s and co-ed ice hockey when I'm not busy with the kids or W.



Mac- step daughter. Unfortunately doesn't live with us right now and she is the oldest of the kids. She will appear in posts from time to time.



Peanut- Our baby girl. 18 months old now and a complete little diva. We love her to death and at time is Butters best therapy.



Butters- He just turned 4 and was diagnosed with Asperger's Syndrome back at the end of October/ first of November of last year.