Monday, April 02, 2012

Autism Awareness Day/Week/Month/Life: I can't do it

Miss 6s Aspergers diagnosis is like a slowly healing wound.
Mostly I don't really notice it, but now-and-then I bang it,
and THEN I notice.

Autism awareness day/month is banging that very sensitive part of my psyche, big time.
Much to my surprise, actually.
Maybe it's part of the grieving process.
Maybe I'm onto anger, or denial, or something.

I wanted to be involved with give-aways.
I wanted to 'raise awareness.'
I wanted to talk about how every day in my house is autism awareness day.

But then Miss 6 had yet another meltdown,
and we had the therapist at home yesterday,
and she wouldn't eat,
and she doesn't sleep,
and I can't brush her hair,
and she's taken against the Easter Service at school - meaning I'm going to now have to enter into lengthy negotiations and contingency plans to get us all through that hour of existence
and being around her right now is like being around a ticking bomb, as  excitement over Easter, mixes uncomfortably with the change of routine from school to holidays.
In fact being around her is always a ticking time bomb.
I am endlessly balanced on a tightrope.
With no safety net.
All day.
Every day.

And each time I see all the Autism Awareness information out there
I grit my teeth just a little harder
Because this year, to me, its a reminder that
I've been welcomed into a club (so warmly, and with such open arms)
But I don't want to be there
I don't want to deal with all this
I'm over it
I want it to go away
I just want normal
No screaming
Just one day, with no screaming.

11 people love me:

Tracey H said...

You've got every right to feel the way you do. If any of us *wanted* to be here and *asked* for this for ourselves and our children, I'd be questioning their sanity.

nevyn said...

Hi Caitlyn,
They all sound like normal and strange as it may seem, healthy responses. I was diagnosed with aspergers when I was 41 and my parents went into denial. It doesn't matter what the age, parents always feel pain when they find out there is something wrong with their child.

Sami Lee said...


farmer_liz said...


Greenie Canberra said...

Hi Caitlyn
As the once very young mother of a very disabled baby boy - I know exactly how you are feeling right now. Farmer Liz has the right idea - HUG from me too - Greenie x

dixiebelle said...

Crap. I don't know what to say, but what an awful thing for you all to go through, and even though you may not be doorknocking or letterbox dropping or anything, you've raised my awareness with this very blog post. Thank you.

Stiff glass of wine now?

Caitlyn Nicholas said...

Thanks Dix :) 

Caitlyn Nicholas said...

Thanks Greenie :) And hugs back, sounds like there's a very sad and difficult story there.

Caitlyn Nicholas said...

Hey Nev :) Diagnosed at 41, wow!  

Aspergers isn't wrong, its just different.  It fascinates me endlessly how Miss 6 processes the world around her, Aspies are very very special precious people.You are right though, its a huge thing for a parent, just huge, and with all things parent-y, has loads of guilt and worry attached.

Its never easy is it?!

Mel said...

I can't imagine what you are going through.  I am sending hugs.

Hannah Bell said...

And now we send them back and start to wind that spring again...
Just found you! Congrats on your contract signing!