Monday 31 August 2015

YES. We have autism.

I get a weekly newsletter from mindfulness expert, Dr. Rick Hanson (not the Man In Motion) at work. Today's newsletter was called "Say Yes." Essentially it was about the well known concept that suffering lies in the resistance, so when we say 'YES' to life (instead of resisting), we suffer less. It doesn't mean we have to like it, but it means we are accepting it for being what it is. Such as 'Yes, there is nothing good for breakfast,' or 'Yes, I would like a pumpkin spice latte, but I can't afford it.' or 'Yes my desk is covered in mouse poop again this morning, and I am still thankful for my job,' or

Yes, we have autism.

I say 'we' because even though its my son who holds the diagnosis, he and I are all in this together. He suffers in significant ways at the hands of autism, and so do I.

For the first four years I have generally been able to help him contain his frustration and lack of emotional regulation. But he has done a lot of growing up over this summer before Kindergarten, and all of the sudden his rage and upset are moving beyond what I can intervene with. I am starting to get the point where I have to let go a bit and allow him to find his own way through autism.

In the last week my son has bitten two people through the skin, one of them he bit three times (and that person knew better how to prevent the bites, but didn't). He began brutally biting and tearing at his skin with his own teeth when he was prevented from biting others (and he rejects chewy toy interventions). He INSTANTANEOUSLY goes from relaxed to screaming and smacking his head on the ground. And my arms are black and blue this week from his pinches. (The pinches used to be the big problem. Now I think, "Oh, its just pinching. That will just bruise.")

What are all these tantrums about? Could be anything. Like he has brought me his sippy cup to get refilled with water. Since I have to walk to the fridge, get the water out, take the lid off the cup, pour the water into the cup, and twist the lid back on, he is tantruming because I haven't instantaneously supplied water in his mouth. He knows I am getting it for him. But he can't stand the wait. Or the most common tantrum as of late is because he really enjoys a song on one of his tv shows and he wants it replayed instantly. Yes, we have the technology to do so, but he will tantrum unless you replay the same 2 minutes over and over for hours on end. I am not exaggerating. When I once permitted this behavior because I couldn't stand the screaming, I replayed the same 30 seconds on his iPad video for almost three hours. The only reason I could stop was because he fell asleep.

So, to help me survive autism, I have elected to replay the same 30 minute video all day, of which he likes three segments. So he is happy for 5 minutes, screaming for 10 minutes, then happy for 10 minutes, and screaming for the last five. I feel he needs to learn to wait for his favorite parts to come on, even if it doesn't feel good to wait.

In my survival of this cycle I have noticed that when I intervene to prevent his potential injury, such as put my hand between his banging head and the floor, he stops head-banging, and targets his frustration at me by pinching, biting, and screaming all bloody hell at me. Or he does anything in his power to get away and bang his head in another spot. He seems to know I am mostly horrified by the head banging and the screaming, so that's what he does.

Yesterday afternoon I decided just to leave him be. The fastest way to de-escalate him is to leave him alone with some blankets and pillows. As I watched him without being seen, there was very little head butting. There was self-biting, but he wasn't biting through the skin, and it appeared that he wasn't getting the bang for the buck that he was used to. So he tried something different. He tried throwing chairs. He preferred his kiddie chair since he could throw it farther and louder, but he attempted the kitchen chairs too. Since he is only four I doubted one would go through a window, so I let him be. It was quite a cacophony.



I realize that in just a few years I won't be able to let him do this kind of thing anymore, but we are not there yet. I do have an option of creating a padded room in the basement when he grows older if need be. I am hoping he can verbally communicate by then and we won't need it.

In my theme of rest and healing, this doesn't jive. This is why I need to focus so much on rest. But YES, the suffering is found in the resistance. If I want to stop suffering and keep healing, I need to say, Yes, some days it is a mad house. This is what autism is.

And Yes, we have autism.