Monday, February 7, 2011

Recently, I find myself thinking about Mak lot. He is my son, so of course he occupies a great deal of my energy and contemplation anyway, but he's really the focus of my thoughts most of the time these days.

I find myself thinking about his future. He is still too young to know with certainty where he will be in ten or twenty years. But instead of the contemplations on my child's future partners, education, employment, and so on, I am wondering if he will be able to live on his own and whether he'll be in community living, an institution, or jail. I've discussed with my financial planner whether we should set up a Registered Disability Savings Plan, or create a trust account for his ongoing care after we are gone.

Discussing that - and even thinking of it now - gives me a lump in my throat. Until recently, I have avoided referring to my son as disabled. Like most autistic children, he is an incredible mixture of abilities and delays. When he was first diagnosed, autism seemed something we could deal with. I could teach him to understand typical people and cope with this world that doesn't understand him. I still feel that way, but with a hearty helping of understanding that a lot of these struggles are simply not as easy to deal with as I'd initially hoped.

My son is violent. All children of his age are aggressive to some degree, but Mak is outright violent. He completely lacks empathy. It is disturbing, not just the first time but every time, when you see him hurt another being with a smile on his face. He often laughs about it. He does not have any concept of empathy because he lacks a theory of mind. Basically, he is not capable of understanding that others have thoughts and feelings. In his mind, if he thinks it is fun to kick the cat, the cat must think it is fun for him to kick her. It makes it uniquely frustrating to deal with him.

As he has gotten older, the violence has increased with his age. He's less prone to all out knockdown rages like he used to have, but he is overall much worse.

If he were a partner instead of my son, I'd have left long ago for all the abuse I've withstood. But he is my child, and I love him. I will not give up on him, ever. But as he's getting bigger, it is becoming more and more apparent that we have to prepare for other things. It's becoming clear that even with all the early intervention, it is possible he may never be able to live on his own. He will likely need ongoing support throughout his life. Acknowledging this, and talking to our financial planner about it, almost crushed me. It's easy when your kid is a toddler and a bit delayed. It's different when they are getting older and the gap is getting wider and wider by the day.

It's clear that we may end up, at some point, having to hospitalize him for his own good. The other day, I was very seriously considering taking him to the ER and asking for him to be admitted and medicated.

As difficult as it is to write about, he tried to kill his baby sister, which is what prompted me to consider taking him to the ER. With a smile on his angelic face, he told me "Strangle her, make her dead."

No one writes a book to tell you how to handle one of your children wanting to kill another.

For all the books about coping with autistic kids, this seems to be the dark side of autism that authors really seem to shy away from. I can find a million tips to teach him how to cope with sensory overload. I can find seamless socks, and ID bracelets, sensory fiddle toys, social story apps, and so on and so forth. But where can I get real help to deal with this kid? I don't want the 'ignore it and it will go away' bullshit I get from psychs - it doesn't work with him. I don't want this happy fluffy bunny 'my autistic kid shits rainbows and butterflies' crap that I read about on parenting websites.

I want information from the trenches, from other parents who really deal with this. I KNOW my son isn't the only kid like this. But all these organizations that 'support' autism shy away from the kids like mine. They present autistic kids as mysterious and misunderstood (fairly true) but overall harmless, which really isn't true of all kids. My four year old could probably break a grown man's arm if he got of a mind to do it. Harmless, he is not.

The reality of it is that there are many kids like my son, but there isn't enough information out there about how to deal with it. Tactics that work on typical kids do not work on him, and I expect other parents are in the same boat. This is the dark side of autism that no one writes about and I want to break the silence on it.

I want to talk about it here. So here I am, telling you. My son has a disability that is almost beyond my ability to deal with. He is violent and the thought of how much stronger he will be in a few years terrifies me. His psychologist has failed us. Specialists really have no idea what to do.

We're adrift, really, trying to figure out how to get through to this child. It's not easy. In fact, it's quite scary.

I love this child so much I would choose to die in place of him in the span of a heartbeat. That's why I am not ever going to give up on him, and until my dying day will make sure I have done everything possible to try to help him make the most of the life he can have, even if it kills me.

1 comment:

  1. Thank you for sharing this. I'm sure it'll help someone who will really need to know that they're not alone. You're very brave.

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