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Tuesday, 18 March 2014

The Bombshell

We had a review meeting last week at the nursery, led by the specialist speech therapist and the early years intervention team to discuss their assessments of Taters, what action to take next etc. It ended with me blubbing my eyes out and walking back home with tears streaming down my face. So no, it didn’t go well.

The upshot of it all was that he’s doing so well with his talking that he no longer needs the specialist speech therapist, but as a parting gesture she’s referring him for an autism assessment. Unable to ignore his repetitive behaviour and fear of new situations, she feels she has to.


So she finally said it – although of course I knew she’d been thinking it ever since their first meeting. I feel a tiny bit of relief that someone has finally named the white elephant in the room, I understand now why all the special treatment, the tip-toeing around him, the various people coming in to nursery to work with him. It was obvious they thought something beyond timidness was going on here and at least now it is out in the open. I’m glad that’s cleared up.

But it totally floored me. He’s come such a long way in the last few months, I wasn’t expecting it now. I thought that worry was a thing of a past, a phase he’d now grown out of.

If it was just the speech therapist saying it I could take it with a pinch of salt, I’m sad to say I haven’t really rated her. I could also maybe choose to ignore the early years people who carried out one assessment of him when he’d only just started nursery and hadn’t settled in yet, they didn’t get to see his true colours either. But the nursery backed them too, the nursery who’ve been so great with him, who I trust, the nursery head who has two sons with autism. They too pointed out behaviour that concerned them.

As for the things they said, some of the examples I agreed with, albeit only partially, others I felt were blown out of proportion, others I absolutely didn’t agree with at all (he doesn’t have any trouble with different food textures, he’s a great eater!) Some of what they said I recognised, but whereas I didn’t think it was all that unusual, or down to the fact he only started putting sentences together 3 months ago (repeating phrases, not knowing how to talk to other children) – they were suddenly recited at me as cause for grave concern. It was a nightmare.

I’m sorry if I sound angry or bitter. I know I’m being defensive and feel like almost attacking the professionals and I actually don’t mean to. It’s just that I want to be angry at someone, defend my son against this, stand up for him. But there’s no one to fight… If that makes sense. I do know that they’re on our side and trying to help. They can only go on what they’ve seen, and enough flags have been raised to warrant further investigation. They are doing the right thing. I’m sure parents who’ve had to practically break down doors to get help for their kids would tell me that.

It’s just so very hard to hear. It broke my heart. I suddenly imagined a lonely future for my wonderful little boy, unable to make friends, form a relationship… I quickly leapt to feeling scared about what would become of him when I’m no longer around. I will fiercely protect him as long as I’m alive, but who will look after him then? I know, I know, that is the worst case scenario.

You see I do know my little boy is different. He always was. I saw it in playgroups, at parties, we always stood apart from the crowd. But I don’t know that I believe he’s autistic.

But whenever I offered an example of his behaviour that contradicted their conclusions, they sounded surprised but then told me: “The spectrum is very wide.”  How can I come back against that? Maybe his behaviour does put him on the spectrum? I just don’t know. His play can be quite repetitive, but he doesn’t get lost in repetitive loops in the way I thought autistic kids do?... He does like being around people… he is sociable… his eye contact is great… he’s clingy, not distant…

But the spectrum is very wide so I’m told.

Anyway apparently there’s a long waiting list and the assessment itself is a long process, so there won’t be a definitive answer for a good while yet. I don’t like living with uncertainties, but I’ve now got to live with this hanging over us for the remainder of this pregnancy and beyond. I feel like I’m scrambling to try and get to the top of the hill and cope with it all as quickly as I can.

Thankfully little Taters is oblivious and as happy as always. And I intend to do everything I can to keep him that way.

Before I sign off for today I want to say one last thing. Since that meeting I have become obsessed with the subject and I’ve read everything I can get my hands on about it and I have come to one realisation that’s comforting me right now.

Being diagnosed with ASD or autism does not doom a person to a life of misery. Just as being “normal” does not guarantee a happy ever after.

I’ve got a lot to process right now…

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