Tag Archives: Autism spectrum

SEN jungle for autism

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Reality hits. I’m a liar. I’m dishonest. I say I’m ok when I’m not. I pretend to be strong when I’m terrified, anxious, abjectly miserable. My fear makes me fight. I fight, then collapse. I’m better than I think I am, maybe. But still wracked with self-doubt and low self-esteem.

Two-hour school meeting two days ago – soon to be a glorious monthly event. Professionals talking at us, with endless jargon and little action. Plans, reports, evidence, levels of evidence, levels of need, automatic funding and applied-for funding. Tribunals, panels, professionals. They will decide what help L should have, then what funding allows. Controlling his future, and what skills they deem necessary for him to fit in.

It is painful and confusing. The information a bombardment, the psycho babble impenetrable. I’m exhausted, before I even begin. And we’ve just returned from two lovely days in Paris (thank you, family, for that blissful birthday present). I should feel relaxed. The meeting destroyed that. I’m broken and depressed. Life is officially a battle.

This fearsome jungle is the SEN system. This morass of statements, meetings, appointments. This blundering intrusion into our lives and hearts. This jungle we worked to avoid – for the autistic beautiful boy, for us.

It will pass. But today. Just today. I feel alone.

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I didn’t want a girl. I didn’t want an aspie.

I was remembering tonight that, when pregnant, I’d said I didn’t want a girl. I’d been relieved at the scan, when we saw definitively that he was a he. Now don’t get me wrong. Girls are great. I should know, I am one. But I’m not a girly girl. Sure, when I was little I played with dolls, tottered in my mum’s high heels, smeared on her lipstick. But, more often than not, I was with my brother climbing trees, jumping off walls, building dens and sending Action Man down a death slide. I once tried to shave my face, emulating my dad (RIP) using his razor blades. Cut my face to ribbons, but it still seemed cooler than any female accoutrements. Blame three older brothers for my tomboyishness.

So it was not misogyny (I don’t think) that worried me about having a girl. It was the inability to relate to girls and women. Girls and women seemed difficult, duplicitous, and untrustworthy. They cared what boys thought of them, they were coquettish, and I was the plain-Jane book-reading geek. Mystified by socialising – how to make and keep friends – I was bullied by the ‘mean girls’ clique. So, as a girl/woman, I knew the difficulties a girl could face. I didn’t want that for my daughter.

Fast forward several years. We find out that my boy’s dad has Asperger’s Syndrome (or is on the autistic spectrum, whichever terminology you prefer). We realise that darling son is likely an aspie too. His extreme quirks, fears, obsessions, oddities, extraordinary vocabulary, and extremely high IQ all make sense. No longer do I feel bewildered by his ‘tics’, ‘stims’ and OCD habits. The one where he had to lick his fingers in a particular order a thousand times a day. The one where he would grimace, flap his arms like a chicken, then jump (all in the space of a few seconds). Many more have come and gone. At the moment, his tics are mostly vocal (a lovely humming, where he goes up then down the scale again). Rather musical and rather lovely. But then, I suppose, I am biased.

I didn’t want a girl. But, I didn’t want an aspie either. I didn’t want a child who was teased by the teaching assistant, when he was overwhelmed with stimulation and would clamp his hands over his ears. I didn’t want a child who cried at birthday parties and clung to me, but would still refuse to leave. I didn’t want a child who didn’t want to go out, go to new places, eat new foods, acknowledge people or look them in the eye. One who couldn’t follow simple instructions, or would cry when being taught new things. One who already dominated me intellectually. I didn’t want a child that was bullied.

I got the child who mastered sarcasm, aged two. The child who reads better than most adults. Whose understanding of complex social situations, people’s intentions and true natures, is akin to psychic. The child who notices every little detail, tells me I am beautiful, and gives me a pep talk about how to cope when things get really bad. He is seven years old. He is as old as the hills.

We don’t always get what we want. And aren’t we lucky.