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
For more fun with SOOC Saturday or to participate yourself visit Melody at Slurping Life
Saturday, August 15, 2009
SOOC Saturday - Being Loved Part Two
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I love the new sticker!! Just live in the moment.
Hi after reading what u hv written i too should stop looking at far way tommorows...and celebrate tha fact that i have a child who loves in his own way.
WOW!!! what a beautiful insight...your post really touched my heart.
You could have a perfectly (normal)family, with all the riches and treasures that are available in life, and be beggared beyond belief when compared with you and yours...
Blessings to you and keep living in the moment..
This is lovely. And from seeing the photos you've posted in which your son gazes adoringly at you and your husband...could there ever have been a doubt? You are loved deeply and thoroughly by your handsome, smart, delightful child. xo
Beautiful K as always!
Your blog is beautiful. Your son is beautiful. Your heart is beyond beautiful. well done.
Goosebumps... just beautifully worded.
And I struggle with the same things about myself. Curing or celebrating my deafness - but no easy middle ground.
Discovering the blessings while bonding in a way that has nothing to do with my special needs? Priceless.
What a beautiful post! And I love the new sticker.
your words are beautiful....thanks for sharing :)
What a great way to look at it! Just as the lens, the focus, the speed, how much light you let in, and how close or far you choose to be from the subject can totally alter a photo, so can those same things totally alter your view of a situation. Great post, and great pic!
Our children teach us so much :)
I *love* the new sticker, and as always I love your perspective on things and how you put it into words :). Thanks!
Thanks for stopping by my blog. I love your loving acceptance and devotion to your son :D
Loved the post! I also think the new sticker is wonderful!
<3 You've brought tears to my eyes on this beautiful Monday morning. Thank you, K. (((hugs)))
Well done, K. What a sensible bringing together of the ends of the spectrum of perception.
Since I now know you work in marketing (yes?) I will challenge you by saying that it is media that makes public perceptions of autism extreme - cure or celebration. ('News' as a product.)
I repeatedly caution my readers to be suspect or be sure of their source of information. Even quoted research can be distorted for an agenda.
The honesty of blogging gives me the message that your readers love you, too. Well done, K.
Thank you for your words.
I got impatient with well-meaning people who told me it was okay to grieve when we found out that our son was on the autism spectrum.
Maybe it was ignorance, but I did not see a reason for that. We finally got answers for our questions. Maybe not what a parent hopes to hear, but its not a death sentence either.
Speaking personally, we see his autism as an extension of himself, like his eye colour and quirky humour.
We really feel quite lucky. Because we are -- all of us. Our son is happy, healthy, and sunny. And he loves us.
And now I want one of those bumper stickers! So true and important to remember!
Fantastic bumper sticker. I want to get one of those...love it!!!
You sure know how to make me cry! This is beautiful.
(FYI- When I'm silent here for a couple of days it's because I know that whatever you've written is good and is going to make me think, so I come back when I know I can take it all in. I hope that makes sense!!)
"But for this mother, its about celebrating this child"
:) Yes it is.
You always brighten my perspective. Thank you.
Hugs and blessings, always.
"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?"
Your writing is beautiful. This is so well said.
I'm with you 100%. The love and sweetness tip the scale heavily over the rest. It is definitely not so bad.
Chiming in late here - but what a gorgeous balance.
Thank you for this post.
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