Heavy on my mind

I am reading House Rules by Jodi Picoult. It is a story about a young adult/child with AS accused of murder. The character really incorporates all the stereotypes of an Aspie which in my limited experience is quite unusual. However the possibilities are realistic and I might add just a bit terrifying. The boy cannot tolerate being touched and so as you can imagine the process of being processed is melt down inducing.

AK is certainly not as effected as this character but the story has me thinking. Things I have never considered are now in my mind. It never occurred to me that the hallmarks of AS (no eye contact, flat voice, literal thinking, obsessive interests, lack of social understanding…) might also be considered indicators of guilt in a criminal investigation.

Putting my child in the books scenario makes me feel helpless. I like to think that there would be more understanding if the powers that be knew the defendant was autistic but experience tells me that is not always true. That is one of the hardest parts of AS, AK looks like any other child, in fact he seems very mature for his age. At least that is the case until something triggers his sensory issues or he feels he is being treated unfairly. When this happens look out because my 20 yr old acting 11 yr old suddenly becomes a 3 yr old acting 11 yr old…(does that even make sense?). The contrast is mind-blowing and people cannot really process what has happened. It is quite easy to lump him in as an undisciplined bratty child.  Add to this the fact that the only way to help him out of this situation is a cool down period. The more you try to reason with him the more escalated the situation becomes. His own father has trouble understanding this concept how can I ever expect those who don’t know him to understand?

I am only partway through this novel but it really has my mind working overtime.

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AK

AK is my 11-year-old son. He is smart, loving, kindhearted and snarky as can be at times. Andrew is an Aspergian, an Aspie, he’s on the spectrum…..call it what you want he is a child living with Asperger’s syndrome or AS. At this point in my life AK is my job, he is my main priority. A good deal of my life is structured around making his life run a little more smoothly. I am constantly looking ahead to see what might disrupt our peaceful existence. AK has sensory issues and these can make him meltdown from out of nowhere. Things I have learned are that AK doesn’t do well without structure. A crowded room can be painful for him and a noisy crowded room can bring his world crashing in on him.

Something I have learned about the world because I am AK’s mom is that the world in general is judgmental and not very understanding at all. I would be a rich woman if I had a dollar for every look I have gotten when he melts down or every snide comment about a little discipline going a long way.  Once upon a time I had these delusions myself. I thought consistency and clear guidelines made for the perfect child. I have eaten those thoughts and words a million times over.

Please don’t get me wrong. This is not a complaint or a whine. I wouldn’t change AK for the world. He is so damn bright and he sees the world in a much different way than I do. I do wish things were easier for him and I wish I could make everything run smoothly in his world. I can’t and I accept that.

We are trying new meds this year. Abilify is being used off label for AS kids and we saw an amazing change in AK when he started taking it. Unfortunately along with the good came the bad. He weighed 67 lbs when he started taking it last June. He currently weighs 105….almost 40 lbs in 9 months. We can’t go on this way. I recently did some research and found a study done combining abilify and metformin. Results showed a majority of kids on that combination losing weight. We are trying this. It has been 2 weeks and he hasn’t lost any weight so I think we will be upping the metformin dose this week. We started lower than most as the Dr has never tried this combo before and he wants to play it on the safe side. If this doesn’t work I am not sure what our options are. I know that one is not to leave him on this medicine and gaining weight like crazy.

Hello Blog World!

I have been feeling the need for a place to put down my thoughts and feelings. I have tried this blog thing before and not kept up with it but here I am trying it again.