Everything Changes But You

Last week was SP’s assessment feedback meeting.

I’d been dreading it: sitting at a table of professionals, the only person with an emotional investment in the subject matter, as they deliver their verdict on my son’s failures. Even though I already knew what was going to be said, hearing things out loud wasn’t going to be an easy experience. 

As it turned out, it was nowhere as torturous as I expected. 

(Although that’s not to say I didn’t gulp back honking great sobs as I walked back across the park home. So many emotions rammed into one hour – relief, concern, guilt, gratitude – there was no way I wasn’t going to cry at some point!)

The outcome: SP definitely has Autistic Spectrum Disorder. He lacks the flexibility of thought that allows him to access the social world. He has sensory issues that make the physical world a challenge for him. And he will face the difficulties that these things bring throughout his life. He will never NOT be autistic.

And although there was laughter at some of his more random quirks, it felt like a stab in the heart to hear how he doesn’t fit in at nursery and how stressed he can get during transition periods.

But, at the same time, it was clear that the diagnosis didn’t actually change SP. He’s the same little boy he was before the diagnosis. He’s the same little boy he was at the start of the process and the same little boy he was before we were even really aware that anything was different to how it would normally be.

What the label does change, however, is that we will hopefully access help and support that will help us mould the world to fit SP better and to prepare SP for parts of the world that aren’t malleable.

(Although I do fear that accessing support and shaping the world – even just our immediate world – is easier said than done. There seems to be a defecit between supply and demand when it comes to services and the education system seems largely and increasingly intent on denying additional needs.)

Until now we’ve largely been winging it and yet for all of the difficulties he faces each day SP appears to be mostly happy. His world is all he knows and at the moment he’s not bothered that he doesn’t quite fit. And for the aspects that do upset him, now that we have the diagnosis we can work on strategies to help. His nursery have been referred for further support and given advice on how to manage the difficult transitions. The Earlybird course is helping at home and I got a pat on the back during our first home visit. And it’s visibly changed the attitude of those around us: he’s no longer a badly-behaved, poorly-parented child, a spoiled brat who needs more boundaries. To those that know (and over time, I’ll hopefully learn not to care so deeply about the reactions of those who don’t know) he’s a little boy who needs a bit of leeway to cope.

It felt odd to come out of a meeting with an irreversible diagnosis and to feel positive overall (despite the sobbing). It feels odd to feel relief that he has the label. But now at least we can put the question of diagnosis to bed and focus on how best to deal with it. After a year of questions that has to come as a relief!


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