Wednesday, May 02, 2012

Where did i go? I've been hiding.

wow....still reeling i guess. Still getting used to having a kid on the spectrum.  I heard a mom refer to her denial & depression of the Autism as "Pre-Diagnosis" and laughed. I knew just what she meant.

She KNEW that her child had fallen onto that spectrum we had heard so much about, but wasn't doing anything to hurry along a diagnosis. Some parents want to know, they need a reason, and i think those are mostly the parents of NTs. Those of us that have a kid already born with designer genes, don't want another dx.

Then, i got the dx. (that's diagnosis for you NT parents) (NT= "neuro-typical" for everyone else..hahahah or "typpies" as i say, as in  "my other kids, who are all typpies") Yes, we have our own language.

I had a great team at school. They saw it happen, too...and started making adjustments for it while waiting for me to catch up. We started referring to it as "the A word" in IEP meetings. This started happening the summer between 5yrs and 6. In between the two times she attended Kindergarten.  I thought she was angry because we held her back....and hung to that reasoning for 2 years.

Then we contacted an Autism specialty group called Judevine, later bought by a bigger group and renamed Touchpoint. I am still happy we went this they sent a trained eye out with a camera...filmed the testing, and then took it back for review by other experts. It took 6 weeks to get their results back, but the day the envelope came (Larry opened and read, just nodding at me) I got phone calls from all over the state. Technicians wanting to come in and teach us how to teach molly, support, and technical advising. They were wonderful.

I was not wonderful. I cried for a year every time i tried to verbalize the word Autism. Every single time.

That is when the blogs slowed down. you know, if you can't say something nice.........

Then i saw this statement from the blogger group:

 A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.
So, we got to thinking.  What would we say to that person?  What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance?  What if it were a person who might never stumble across the amazing voices speaking for autism acceptance?  What if that person thought himself/herself all alone?  What would we say about the present?  What would we say about the future?  What would we say about happiness?  And hope?
Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers.  But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.
We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.
And – for those of you who do not blog but wish to join in – please post your positivity message to or send us an email at
Please join with us on the last day of Autism Awareness/Acceptance Month – April 30th – in a flash blog .

Those are some pretty amazing people. And now that I've been slapped out of my funk,  I will also try to get back on the writing horse  and share my Molly, and all her glory, with all of you. She will be 12 in June, and it's time for me to get over it, and get on with it. 

Today? they asked her to stop riding the bus. 

1 comment:

jane walts said...

this means so much challenge for parents who have children with autism, however if you get to learn them they are wonderful.

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