Friday, September 17, 2010

The Twilight Zone

Imagine a world where your school district gives you *nearly* everything you have asked of them.  A world where when you suggest that your child might benefit from being taught to use an augmentative communication device, they readily agree to pay for you (and him) to go to a center to try out various types.

Imagine a world where one device is chosen by the team (a Nintendo DS) despite the Mom's concern that its screen is too small for her son to use. (Though the Mom doesn't want to make too big a fuss about it since, hey, the district is actually finally moving in the right direction here!)

Imagine that a couple months' after that decision is made the Mom very briefly mentions that over the summer her son's interest in the family's ipad has grown significantly and that she is still a bit concerned that the Nintendo device won't work because of her son's fine motor skill issues.

Now imagine a week later getting an unexpected phone call where you are told, 'No problem, we are happy to purchase your child an ipad AND the prologquo2go software for it AND we plan on teaching the district's speech and language pathologists how to use the program in case it is warranted for other children.'

SHUT UP.

But, yes, folks this very thing has happened for our family and for our M from a district I have struggled with for two years.  I think I am in the twilight zone and something really screwed up is going to happen that will snap me back into reality!  I am so ridiculously excited about having a team to help my little guy learn to use this communication tool, and I hope and pray that it is the thing that helps us to finally get a gauge for what my little guy wants and feels.

Last night as M was laying in bed, I asked him, 'What do you want to be when you grow up? Do you want to be an artist or a musician?  Do you want to be a fireman or a teacher?'  And my boy seemed to get tears in his eyes as he stared intently at me during my questioning.  It is heartbreaking to miss these moments with your child because he is non-verbal.  B proclaims his desire to be a different thing almost daily and I love hearing about it.  Oh, what I would give to know what M dreamed of being!

So while I cannot allow myself to get my hopes up too terribly high that this will be the thing that finally helps our boy to 'talk,' I hope my time in the twilight zone extends a bit longer so that I am able to witness the transformation from a boy who can't communicate with words to a boy who can communicate with the help of an electronic device.

6 comments:

little miss mel said...

CONGRATS!!!! What GREAT news. Let's keep the ball rolling people!

Chel said...

I read this and I got teary eyed, a voice truly is a very wonderful gift! Congrats on the AAC and P2G:)

Boy Wonder's Mom said...

Fingers crossed!!!!

Nicole English said...

Thats fantastic. Dillon was lucky enough to have an ipad purchased for him through his autism package funding and he loves it

Joanne said...

Fabulous news, Deb. Keep up the momentum - I will keep you in my thoughts.

Paul and Kerry said...

OMG Deb! that is awesome! So happy for you guys!

And I have those very same moments with Kyran. Where I am talking to him, asking questions and he is staring into my eyes, clearly frustrated. Sometimes I have to hold back from telling him to just say it.

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