Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Will she ever get better? (Guest post by Lollipop)

with one comment

Today I received the following email, and the sender kindly agreed to my posting it here for us all to read.  I’m sure many of us have been asked this question, and many of us have been stumped for a response.  Tell us in the comments what you would say.  Over to Lollipop:

______

I’m a mother (married, American expat living in London for the last 20-odd years) of a 9yr old girl with PDD-NOS, sensory processing disorder, & semantic pragmatic language disorder.  She’s social, verbal (more verbose), she’s fun & funny, affectionate, a drama queen, she has a fantastic ear for music, and she’s mad about cats & just about anything pink.  Miss E attends a wonderful mainstream school, though the bulk of her day is spent in an ARP for SLCN (Additionally Resourced Provision for pupils with Speech, Language and Communications Needs). Miss E’s lucky, she has all the SEN support she needs, though it’s taken two tribunals, a High Court appeal, and finally moving across London to achieve it.

So much of your blog resonates with us (my husband also looks forward to each new entry), thank you for sharing your experience.  Even when we know we’re not alone, somehow it helps just seeing we’re not alone.

Something my mother had said recently has also been echoing around my head.   “Would Miss E’s differences ever be behind her?”  In other words, would she ever get better, would she ever improve so dramatically that her quirks were unnoticeable.  Unspoken was the question of whether Miss E would ever be fully able to cope on her own.

So.  There it was.  The question.  Mom had probably been just as worried about how it might be received as how she might be perceived for having asked it.

It was an innocent question.  And rather than any wish that Miss E were any other way or anything other than her very own wonderful self, it was a question absolutely laden with love & stemming from a genuine desire for life to be less of a struggle for Miss E (and by extension us, her parents).

If we suspend the now well-honed defensive reaction, and if we can set aside our own inner-voiced niggles & fears to be completely honest with ourselves, I suspect it’s actually a question all parents of kids with special needs will have wondered at some point.

In answering my mother, I dimly recall saying something to the effect that autism (even high functioning) isn’t something outgrown, that it’s a lifelong neurological impairment, but that the clinical picture grows & changes & improves along with the child as it grows & changes & matures.

Almost immediately, I realised that probably didn’t say much to someone who wasn’t as familiar as I am with all the medi-speak.  The moment had passed and I’d failed to give an adequate answer.  I’m sorry, Mom.

If I had a do-over, I might say:- “Miss E will always, always have challenges, Mom, it’s a matter of degree.  We fully expect Miss E will one day live a productive & fully independent life, though she will always, always perceive life a little differently – and that’s no bad thing in & of itself.”

What we know is that the more coping strategies we can give our kids now at a young age, the easier it will be for them to begin to rely on these as second nature.  Each coping strategy becomes a stepping stone for the next, and the next, so that a once blocked path to, say, socialisation, gradually becomes accessible or more accessible.

With my stepdad, I simply shared a favourite autism witticism:-  “Autism…It’s not a processing error.  It’s a different operating system.”  Although he adores his granddaughter just exactly the way she is, this seemed to open up a fresh perspective for him.  Sometimes, often, that’s enough.

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Written by Spectrummy Mummy

March 1, 2012 at 7:16 pm

One Response

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  1. Beautifully written and clear enough for theirs Grammy to understand. Thank you for that. You’ve put tears in my eyes and fresh perspective in my heart.

    Karyn

    March 1, 2012 at 7:40 pm


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