Diagnosis > Apocalypse

Well, one large mug of coffee down and I think I’m semi-coherent. Despite Spongebob chattering away in the background. The actual show, not a codename!

It seems as good a time as any to explain the saga of Twig’s diagnosis, or lack thereof, before the jitters set in and I’m forced to track down cigarettes to balance it out. I’m very health-conscious, as you can see..

So. The first real inkling of anything amiss actually came from a surprising source; Shovel’s mother. Let’s just call her Miss Ellie. If you ever saw Dallas on TV, that might give you a sneaky insight. She decided, in that authoritative way that only nosy mother-in-laws seem to truly possess, that Twig had autistic tendencies. And my reaction? I couldn’t say if it was typical, since I’ve no real point of comparison. But I was immediately, guns blazing, on the defensive. How dare she imply there was anything ‘wrong’ with my baby?

The situation didn’t improve when she took him to her family practitioner, without my knowledge. Though he agreed (supposedly), I didn’t put much stock in the claim. That woman could strongarm Saddam Hussein into a needlepoint class, if she felt the need. She’s that scary. Plus, she has a tendency to hear what she wants to hear, which usually manifests itself as agreement.

Twig was just about to turn two, at the time. Despite our predicament (I’ll dicuss that in another post) he was a happy child. He made eye-contact appropriately, he was affectionate and empathic. Alright, so he wasn’t showing much interest in verbal communication. But frankly, neither did I. We barely saw anyone else, and we understood each other perfectly well. Yes, obviously that’s now a source of ‘mommy guilt’. I never stop looking for them.

By the time our mute muse was two and a half (funny how those fractions are so important, when it’s a child), he and I were back in Europe, outwith the influence of the Shovel family. I had expressed some concern to my own doctor, who emphatically discounted the idea of autism. But he organised an assessment, agreeing that something certainly wasn’t quite right.

Said assessment involved a team of experts in various fields assessing him over the course of a few hours. Speech therapist, paediatrician, physiotherapist, you name it. And all in all the results were fairly depressing. ‘Yes, there’s something wrong. We don’t know what, or if it will improve. Oh, and by the way, your kid’s currently operating at roughly the level of a child a year younger than his actual age.’

Spiffy. So now what?

Fast-forward a few months. Twig’s enrolled in Music Therapy, and Speech and Language Therapy, and has his own Play Tutor doing home visits. Music and Play, great. Whether it helps or not is anyone’s guess, but he enjoys it and that’s the main thing. It introduces him to new situations and experiences, with people who know how to handle the meltdowns. Speech and Language Therapy? Not so much.

I had to give that particular lady the boot. Not only was she stalwartly refusing to listen to me, but she also didn’t seem to grasp the fact that Twig was different. Her standard methods didn’t apply, didn’t work, and more to the point they ended up distressing him.

Better than the group therapy, mind you. When he had a meltdown there, they left him sobbing in the corner for twenty minutes (half the session) so they could focus on the ‘well-behaved’ children. Disturbing how much that could actually teach him about society.. be ‘normal’, or be excluded. Charming. As you can imagine, I did not deal with those so-called experts very politely, after that.

Another year or so down the line. After some horrendous experiences ruling out physiological aspects of his condition – sedating him so blood samples could be taken, for example – we were still no closer. Nothing seemed to be actually wrong.. it’s just something wasn’t right. And though I saw improvement in him, almost on a daily basis, he wasn’t where he should be on the all-powerful spectrum of development. So what gives?

As it turned out, the initial observation team had managed to overlook some crucial points. He still sat in the ‘W’ position. He likes running and crashing into things. He never sits still. Those might seem trivial things, but it’s eventually been noted and brought to our attention. Not by some miracle doctor in our health system, but by a family friend. Who just happened to be certified in Pediatric Neurodevelopmental Therapy.

Here’s a couple excerpts from the report she wrote up for us.

A very distressing sensory processing deficit for any parent is the area of touch. The difficulties seen in Twig’s profile include low thresholds for grooming, being messy, having others stand near him. He is greatly bothered by normal physical interactions such as having his hair or nails cut. These must be done while he is asleep to avoid screams. He hates to be physically messy – food or dirt on his body. He demands it be removed immediately. He is bothered by being touched by others and may rub the area. On the other hand, he has a high threshold for learning from touching objects and people – he does this more often than children with integrated tactile processing.

Twig’s behaviors seem to be explained by a poorly integrated sensory system that is inhibiting his efforts to learn about his world. Children demonstrating similar behaviors describe various environmental stimuli (sensory input) such as light touch or even clothing tags as burning, hurtful, scary, feeling like “fight or flight”; deep touch as comforting, more easily felt.  Sometimes they may say they don’t notice what you or I may be intensely annoyed by, such as intermittent background noise. Adults who suffer with this issue say they “wish their skin could be removed”.  Children learning to function without innate integration of environmental stimuli operate with definite deficits. They are aided by a predictable world so learning, play and socialization can take place without the need to seek or avoid input.

Why didn’t someone else pick up on this?

Anyway, as it turns out, our health system refuses to provide us with further help, not even contacts for local groups.. because I have chosen to home school Twig. Of course I have, there’s no way he’d cope with starting school right now. Let alone the fact that the nearest placement turned out to be less than suitable. We were assured that Twig could have his own aide, during classtime. Further investigation revealed that this person was entirely unqualified, just some Joe off the streets.. which to me implies their job would be to keep him out of the way, again, while the ‘normal’ children got on with their edcuation.

That’s not the experience of the world I want him to have.

To him, every day is an adventure. He doesn’t worry over what happened yesterday, or what might happen tomorrow. He doesn’t get self-conscious, or embarassed – you should hear him laugh – and everything is treated with the same amount of awe and wonder as it was last week. Now tell me.. if your kid was that happy, without fail.. would you conform to the demands to force him into the cookie-cutter ideal of ‘normal’?

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Posted on March 28, 2011, in Backstory, Life as we know it. Bookmark the permalink. Leave a comment.

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