Squeak

In case you missed my occasional twitter posts about Squeak, he’s my newly-acquired part-time kid. It was all rather unexpected, really. Caffeinated Otter saw him once a week for supervised contact, then all of a sudden Squeak’s mum decides it’s easier to leave him for unsupervised contact so she can go shopping. Barely two months later, the contact time has tripled, and within another month we were bringing him home for contact time so that he didn’t have to deal with stressful public places.

Squeak’s 4, and I knew within half an hour of meeting him that he was autistic. Echolalia, perseveration, keen interest in a few specific topics. I only got more sure in the following weeks. Sadly, even though his residential family is open to seeking a diagnosis, he can’t get one without a letter from his school. They won’t write such a letter because he behaves well at school. Simply put, because he’s capable of meeting the demands of a reception class, he won’t get any assistance.

So all of a sudden we’ve got a 4 year old to entertain for an afternoon. It took a few tries to get our approach right, even though we’re both self-identified as autistic. Squeak has a very restrictive diet, and easily becomes stressed when presented with the unfamiliar, be it food, activities, reading words.

It’s not a walk in the park, but from what I’ve heard we have it significantly easier than his residential family.

At home, his mum reports that Squeak can carry on with loops of echolalia for hours on end. However, we’ve only observed him carrying on until someone acknowledges what he’s saying, or presents him with a new activity. If I were to guess, I’d say that he’s not acknowledged and interacted with at home in a way that makes him feel like he’s been heard. That the echolalia serves the purpose either of repeating until he’s sure he’s been heard, or that he does it out of boredom when not sufficiently stimulated.

His mum reports that he won’t eat anything not already on his list of foods. I can agree he’s not keen on trying new things, and we’re yet to find anything he definitely likes, but he’s quite willing to try a new food in return for stickers. The important note is that he doesn’t have to. I’ll put the new food out, let him know it’s there if he wants it, it’s OK for him not to like it, and that I can take it away again if it bothers him.

The stickers started off as bribes, “will you try it if I give you stickers?” The going rate is 5 stickers for a taste of new food. Once the food’s out, he’ll quite often ask to look at the stickers before he tries. I’ll let him pick out the stickers he wants in advance, so they’re there for him to look at, but we never make a big deal of him not getting them.

There are things I can do better. I know there are. It has taken me quite a while to realise that Squeak says “I don’t know” or “I can’t” when he needs a bit more thinking time. My past reaction has been to tell him “yes, you do” or “yes, you can”, because I know that he usually does know, and usually can do it. I’m resolved to try to encourage him to try in a more sympathetic fashion (despite the fact that my obsessive need for honesty hurts at these perceived lies). My new script for encouraging him to take a few seconds to think about things or plan an action will involve more positive phrases, like “there’s no hurry” and “take a minute to remember.”

Squeak, despite being quite sensitive to loud noises, or noises that might indicate a threat (think beeps that may be reminiscent of fire alarms, even if they’re quiet), is also quite noisy. What 4 year old child isn’t, right? But I’m very sensitive to loud noises, such as shrieking laughs, the clatter of the marble track (his current favourite activity) and the amazing pitch his upspeak reaches. Ear defenders are appropriate for the marble track and some quantity of verbal stims, and a gentle reminder that some noises hurt my ears, just like beeps hurt his, manages the rest. He can be as loud as he likes outdoors, though, so he’s not restricted from making the noises he needs to make.

My favourite response to his verbal stims, though, is to join in. Hopefully, my purrs and squeaks and meows will let him feel at ease with his stimming. I openly happyflap, bounce and perform other stims. It’s much easier to regulate my response to his noises when I’m using my own sensory regulation tools, and he always looks delighted when I produce a new and unusual sound.

In every case that I’ve had a problem with Squeak’s behaviour (I word it like that because it is MY problem, not his), the answer has not been to apply ABA-like insistence that he behaves the way I want him to behave. The answer has been to look at his behaviour, figure out the purpose for it, and if the behaviour is still the problem rather than his environment or lack of a need being met, talking to him about it. No blame, no shaming, just an honest expression of why I’m struggling with something (simplified to an age-appropriate level, of course), and what I’m going to do to deal with that problem whilst allowing him as much autonomy as I can.

It’s my firm belief that the first question we ask our autistic children, friends and other relatives should be “How do we fix the situation?” Never ever should it be “How do we fix you?” If my approach works for me, an almost total stranger, with a child I see much less than the recommended 40 hour therapy week, clearly the problem isn’t the child.

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