Thursday, December 3, 2009

Trevor and Aspergers

I find I am often asked about Trevor and the "signs" that we knew something was wrong. As I sat down today to talk with his case manager and two gentleman who came to do an evaluation for in home support services, I explained it all again, and I realized I really should have this down for those that ask.

Granted, I was a first time mom, but being the youngest of 8 children and having lots of nieces and nephews, I knew things seemed "off", for lack of a better word.

Trevor started walking at 10 months old...it was Christmas eve to be exact...talk about an awesome Christmas gift for two first time parents. I still remember to this day watching him toddle back and forth between us as we cheered and clapped him on. He was so proud of himself! From the beginning of his walking, he would do a *lot* of toe-walking - he'd curl his toes right under and walk on them. He'd even stand on his toes like that to play. At the time when we really started to take notice of how much he was doing it, I recalled reading something about children with Autism who walk on their toes, but I admit, I didn't know much and dismissed it.

By 14 months of age, he began to have tantrums that I had never seen the likes of. I remember watching him bang his head into the floor over and over when he was upset and again, this didn't seem normal to me.

I remember bringing both of these issues and more up to his pediatrician, but was always assured it was just normal toddler behavior. At one point the doctor even said that the toe-walking could be from a tendon that was too tight, and if it didn't get better, we could opt for surgery to cut that tendon.

Every time I brought up his behavior to the doctor, I was kind of just brushed off - it was always just explained as him being high strung and strong willed. It wasn't till his 3 year check up that the doctor finally said if nothing had changed by his 4 year check up, he'd send us for another opinion. Of course, nothing got better....matter of fact, things only got worse.

I seriously questioned if I could ever handle another child...I had always wanted a big family but Trevor's behavior left me feeling  like a failure as a parent and thinking that having another child would be a mistake. There were days that I spent my time crying, wondering where I had gone wrong....truth be told though, I still have those days. Despite my smile, I am very much struggling with this.

When he did have his 4 year check up, the pediatrician finally agreed that it was time to explore this further. We were moving at that time, so it was put on hold till after we moved and settled in and had insurance and a new pediatrician for him.

Let me tell you that the move was hell on him and in turn all of us. Knowing what I know now, I can look back and understand how the Aspergers affected him. He doesn't do well with change especially when it's not explained in detail ahead of time, and here we'd had another baby, and moved all in a matter of a few months. To top it all off, the house we were supposed to move into when we moved, fell through and we were stuck staying with my sister and her teenage daughter for about a month. The four of us in someone else's house, without the kids toys and what not, was stressful. Trevor was acting out so much - having what I come to realize were meltdowns.

Looking back there were other things we should have probably picked up on, but truth is, at least for me, deep down you don't want to admit to yourself that your child might have something wrong. One of those things was his complete and total obsession with vacuums. We just thought it was a odd, but cute fascination. Not once did it cross our minds that it might be a sign of something bigger. And really by itself, you wouldn't think anything of it...combine it with all the other things and suddenly you start to get this bigger picture. We got Trevor his first toy vacuum when he was 26 months old...he had been begging for one for a while. He loved that toy - it was the only thing he played with consistently...other toys came and went, but the vacuum was a constant. There were times I'd find him curled upon the couch watching cartoons and that vacuum would be right beside him on the couch. He would watch Oreck infomercials over and over...he'd beg to get on the computer and go to the Oreck website. It finally got to a point where we had just DVR'd the infomercials so he could watch them anytime he wanted, and we gave him a log-in on the computer and set it up so that he had an icon on his desktop to access Oreck without us. I had an Oreck for my job and he was forever getting that vacuum out and using it. Since that first toy vacuum he's had a total of 3 toy ones. If I asked him tomorrow morning if he'd like to vacuum, he'd be more excited then most kids are on Christmas morning.

His other love is the computer. We were just talking today about what type of learner Trevor is, and so I told them of how starting around 2 yrs old, Trevor would watch us on the computer and he'd only have to see something once, and he had it memorized and could do it himself. When he was around 3 yrs old, he downloaded and installed Norton Antivirus....something that a lot of adults I know, couldn't do. This year, at 5 yrs old, he purchased a conversion van for me on Ebay - $6000 - I had to contact the seller and explain the situation. Poor kid didn't understand why I wasn't excited that he had gotten me a van for Mother's Day. The crazy thing is, he had to log into Ebay, then make his way to the Autos, then search for a handicapped accessible van and find one that was "Buy It Now". He is forever downloading games and installing them. He changes his desktop around, changing his wallpaper, etc. He will talk to adults about things on the computer and they have no clue - he knows so much with computers!

Trevor is incredibly smart - has a photographic memory - is able to learn things so quickly - when we had him evaluated up here at a Developmental Preschool he scored in some areas off the charts - at levels for a child much older. He is so gifted in so many ways.

We still have our problems but we are getting help and we also have used medication. I know some people seem to have this crazy notion that all parents who choose to use the help of medication do so without a care and just jump on the medication bandwagon out of laziness. But that is not the case - we thought long and hard before we made the decision to try medication. It wasn't something we did because we are too lazy to parent - far from the truth. I wouldn't be so stressed out about all of this if I didn't care...I'd say the hell with it and go about my day, but the fact of the matter is I am doing all I can to get him all the help he needs. It's a process to try to find the right medication at the right level that works for him. We are making progress from where he was before medication but we have a ways to go.

Ok, must end for now....goodnight all....

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