Archive | November, 2011

I got a letter

30 Nov

I got a letter today from S’s developmental paediatrician, who has kindly agreed to also become M’s paediatrician.

The letter was short and to the point – a single sentence stating that M has a confirmed diagnosis of autism.

So there it is. In black and white. Confirmed. Fact.

And you may wonder how I reacted?

Tears? Screaming? Screwing the letter into a ball and throwing it in the bin?

I was tempted for a moment to do all three. Tempted as I stood briefly on the front porch, taking it in.

But then, I didn’t do any of that. I took a deep breath. Smiled, walked back into the house and…. got straight onto the phone to the nearest autism specialist early intervention centre (which happens to be just around the corner from our house) and made an appointment to go in to see them. I then rang the central intake for early intervention, had them send me their form, filled it in and emailed it. Next, was on the phone to the paediatrician’s office to try and bring forward our appointments and formal reporting that we still need to allow us to access funding for M and finally on the phone to his wonderful speech therapist to update her that we’d like weekly speech therapy next year.

I should point out that this letter wasn’t the first I’d known of the diagnosis – just the first time I’d seen it on paper. I’d already asked the paediatrician to send the letter. We’re hamstrung by the hospital moving and everyone being super busy so we’re still waiting for the formal report. But I knew at least with a formal letter, we could start the ball rolling for early intervention.

So here I am tonight, the mother of TWO children with a disability (officially). I am still not sad, but will admit to being pretty bloody annoyed – for him and for me. Lots of appointments, therapy and butting heads to get what is best for him ahead.

And there’s still a fair amount of mumma guilt thrown in. I should have got on top of this sooner. Started the diagnosis process, got onto accessing early intervention and speech therapy sooner, given him more of my time – NOTICED that things weren’t right. I see a lot of it more clearly now as I watch my super Mr Neurotypical boy A developing, but then I had such little experience of what ‘normal’ really was for M. So yep, a bit of a slap in the face that I couldn’t so clearly see that there was definitely something up with my second child with a disability because my experiences with my first child with a disability hadn’t taught me what I should be expect in terms of child development. WHAM.

Anyway, despite the guilt and feeling annoyed, I repeat – honestly, I am really not sad. The diagnosis is positive – he’ll get to access the Better Start funding that we missed out on with S. He’s looking to be cognitively quite bright. His diagnosis is for ‘mild’. Most important, he’s a happy, healthy and reasonably well adjusted 4 year old heading off to 4 year old kinder next year with what I consider to be minimal need for classroom support. Brilliant!

And I am well practiced at filling in forms, attending meetings, advocating strongly, understanding the maze of services and networks of support available and most importantly understanding that a diagnosis like this ain’t the end of the world.

And hell, anyone whose spent any time around me for any part of my life will tell you that ‘normal’ was something that I have never aspired to anyway.

So, bring it on and let’s get my gorgeous boy the very best services and support possible. I know that he’s going to be just fine.

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