I am listening to a doctor's presentation on the medical treatment of Autism.( considered alternative treatment by the mainstream medical community )
His own son regressed into Autism.
He is describing his son's regression."Z stopped using words. We slowly noticed that he talked less and less"
He adds sadly ""For Z, Mama" was the last word to go"
This last bit, breaks my heart and I leave the room filled with pain for the unknown Z, who hung on to the comfort of the word - Mama -for as long as he could.
But Z's mama could not help him. And neither could R's.
This moment- having this feeling - stands out in my mind as signature of my feelings that year.
Sadness, Confusion, Anger, Guilt
Two years later, as I am getting ready to change my Autism car magnet from "Autism Awareness" to this new one, I think about how symbolic it is of the journey I have been on.
In the beginning, Autism advertising and programming filled me with fear, (though I obsessivly watched every program and read every magazine)
Would he love me no more ?
Would my child turn into a stranger?
So hard to believe.
For R even in the midst of a regression - even while losing skills - seemed his own sweet self.
Surely what makes him R, was more than what he could do
If the awareness and fear side of the Autism debate, felt not quite right, the neurodiversity movement was not a perfect fit either.
It never felt right to congratulate someone when they find out their child has autism ( though I love autistic people.)
Nor did R ever feel like he was from another planet.
He is so much of me and of DH.
In this confused time, the only thing that made sense was to learn more about Autism.(And indeed, I did this with obsession)
That was the year of Autism Awareness. And so my car said
It was the time of wanting to read every book,every "rescue story" that there was, searching for the magic answer in the black and white.
But even in this time of fear and worry, the love and the sweetness of this child, made me wonder-is my life really so bad?
And slowly I started to dislike the portrayal of ASD children in the media - especially the implication that ASD kids are burdens on society and their parents.
(What a toxic atmosphere that must create especially for the child )
Moreover, R's weight sits lightly in our arms and is precious beyond words.
As more time passed, I have come to realize that
To me its not all about curing Autism
Nor is it all about celebrating Autism
There are many people talking about those things already and they are right in what they believe in.
But for this mother, its about celebrating this child
"Every child deserves to have his mother's face light up when he walks into the room" my friend Heather quoted Maya Angelou the other day
When all is said and done, this is what R needs above all else.
No longer in a place of fear, I have stopped looking outside and I have stopped looking at far away tomorrows
I look inside our lives and I look at today
And life is beautiful .
Because someone with Autism loves me
Here is Part one of this story.
Thanks to T for the suggestion after Part One
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