Back Under Water

I’ve been quiet here for some months, things have been going really well, so my need to off load my anxieties and ruminations have been at a low. My eldest son has been indulging full steam ahead in his ‘keen interest’ cricket, since its been summer here, (until just over a week ago). My daughter has just been hanging out and being her relaxed happy old self. We’ve had holidays together and no pressure to ‘be’ anywhere or anything.

I thought we were starting to get our act together. I thought this was going to be a new fresh good year. I thought the Lovan my daughter was taking was working it’s magic. I thought that her desire to return to school full time this year was a sign of things to come.

We had managed to get our heads above water, just long enough to take a big gasp of air, before we all got taken back down again, back underwater. I should have seen it coming. But I had been hopeful it would be different this year.

But, on reflection, we were doing well because the kids weren’t under the usual social pressures (ie school). I remember Tony Attwood staying in a presentation, that “the cure for Aspergers is to send the child to their room and ‘boom’ their symptoms have gone”. That’s what happened here. They were away from their triggers of stress and social pressures, so could relax and be their true selves.

Four weeks into term, after doing a brilliant job of attending school, everyday, full time, my daughter suddenly called ‘timeout’ and could go no more.

Last month we got our first of 3 appointments for her autism assessment. The second assessment in 12 months! If you’ve read my earlier posts, you’ll know I wasn’t happy with the very quick and flippant diagnosis we received last year. It was a boarderline diagnosis, so I would think given that, more thorough investigations should have been put into action. But the answer I got from the specialist was “if she doesn’t agree with the diagnosis when she’s a adult, she could always have herself reassessed”.

Not content to have her go through childhood with a potentially incorrect label that could have negative psychological affects upon her; we tracked down whom I believe will be the best judge. This specialist apparently trained and worked with Tony Attwood, the leading expert in Autism, and is whom his practice suggested first on their list of recommendations in our area. Already, after the first 2 sessions, she’s spent more time talking to us and questioning us, testing my daughter using various diagnostic tools (ie ADOS and CARS2) that weren’t touched last time. So I’m hopeful in its thoroughness, the result will be clear. It’s not the diagnosis I’m worried about, it’s a ‘correct’ diagnosis that I want and it will always sit uneasily with me if I’m not sure it’s correct.

I’ll hold my breath for as long as I can as I swirl under the surface of the water, waiting for the current, or a hand, to lift me back up to gasp and breath once more.

3 thoughts on “Back Under Water

  1. I hope this goes well for you all. It’s not easy coping with a diagnosis that you think is incorrect (still trying to get mine sorted out).

  2. Yes, there’s a one year waiting list to be assessed! I only went on the waiting list in December; before then I was finding the courage to go back for another assessment after the incorrect ones. A blood test would be good!

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