Tiger's Stripes
"when parents say, 'I wish my child did not have autism,' what they're really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.' Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."
Don't Mourn For Us, by Jim Sinclair.
I read this snippet over on Aspergersexpress.com. I couldn't access the whole article. So I think back to all my stressful times and wonder if I ever said those words out loud. I think maybe I did say things to that effect, out of frustration. The fact is, I do want my Tiger to not have autism. But I know thats impossible. I don't love him less than my "normal" children. I love him enough to let him develop to the man he will be someday. I want him to be self sufficient. He is already so independent, I know this is what he wants as well.The only behaviors I want changed are the dangerous ones.(i.e. the hitting!) I see his frustration at not being able to speak. I accepted long ago that he would be who he is. And that is , MY SON. He just happens to have autism. And big brown eyes. And an amazing smile. A hilarious giggle. He loves the water, sand, puzzles, Batman, other people's french fries, little black puppies, magnetic alphabet letters, Dr. Seuss books, and Magnadoodle (broken out of the frame so he can use both sides.) His favorite color is blue. He has a little black weiner dog. His best friend at school is named Matthew. He has 3 sisters and a brother that he loves to wrestle with. He gives kisses when you ask. He loves to roll himself up in a blanket for bedtime. Of course there is more than I can ever list. He is forever interesting and wonderful to me and his father. I hope this Tiger never changes his stripes.
posted by echotig at 8:30 PM
7 Comments:
I agree with you Echotag; within that little blurb is definitely a statement I don't agree with. I do not think that any parent that has a child with a disability of any sort is wishing their child didn't exist when they express their wantings for their child to not have to suffer from an affliction. I got a little angry when I read that. I think it's normal to want only the best for your child, and as a parent - when you think of the difficulties that a child has to encounter in their life, whether it's disability related or not - it's normal to wish for them to not have to go through those trials and tribulations. It sounds to me that maybe the individual who wrote that may have had parents who didn't express themselves properly or clearly - or maybe they did have a difficult time dealing with their child who had a disability. But to label ALL parents as that, in my opinion is horribly stated.
Most parents love their children unconditionally - and to insinuate that a parent doesn't love a child who's special, as much as one who's "normal" sounds like a a sad psychological state for the person making that comment.
I kinda got that feeling from reading that too. I believe the guy that wrote that is autistic,and I don't know what his experiences were in life. He is definitely writing to parents that "mourn" over their child's condition. I still would rather have my Tiger without the problems that go with Autism. Every parent mourns at first over things their child may not ever be able to do. Then, as the child grows, they celebrate and enjoy all the wonderful things they can do!
The Autism Society has this big campaign for autism awareness out now that is just terrible. They claim to be the "voice for autism." But I don't know anyone who is autistic that wants them speaking for them. While autism is a disability, people forget that Autistics are usually quite bright, and they understand things on many different levels. Its a big debate and I will be posting about it when I have read all I can about the subject.
Interestingly enough - I didn't realize my sister took my nephew to see a neurologist today...he was preliminarily diagnosed with PDD, one of the Autistic Spectrum Disorders. I'm so relieved...not to know his diagnosis - but to have him diagnosed so that he can receive the proper attention that he needs! His pediatrician infuriated me because she would just say he was developmentally delayed, when clearly - it was beyond that. She ended up at the neurologists because his preschool teachers insisted that he see a behaviourist because of his rages; the behaviourist was not someone my sister liked, so she took it upon herself to see a neurologist. However it happened, I'm thrilled, because he's 5 - and this is something he's needed for some time. They're already setting him up with a different team of occupational therapists who specialize with in this area. I'm thrilled!!!!!!!
Rebecca, I am so glad to see you here.
First, I’m glad your nephew is diagnosed and can start getting services now. Early help is what will make a difference for him. A more precise diagnosis will come in the future. PDD will do for early development.
Second, I’m sure that the small piece of what Mr. Sinclair said did get your dander up. Please consider the mitigating circumstances and who he is preaching to. The autism society of America is comprised of non autistics that frequently do and say things insulting to autistics. Also the environment has become hostile in light of parents murdering their children and being charged with manslaughter.
Autism is difficult. Some parents are weak. Many autistics have endured horrible things. They are frequently considered less than whole. I can’t blame them for being a little hostile. On the contrary, I am glad to see the spunk.
You are an aunt. You are involved. This could be ugly. But it is going to be rewarding. We are with you all the way.
Hi guys: Tiger is blessed to have parents like the two of you. I had quite a visceral reaction when reading that statement from the author, because I am not so sure that it is what parents are really truly saying. I, too, wonder what kind of experiences he had in order to get him to that point to interpret those remarks in such a negative and almost hostile way.
I am looking forward to getting to know both of you - and to share our stories about our "special needs" kids - as my oldest has lupus, and my youngest has ADD - and each of our kids is just plain "special".
Our son's doctor is a neurologist also. He's the one that finally gave the diagnoses of Severe Autism. We had early intervention though. The state of Texs will come out to assess your child if you even suspect a problem. Our first clue was the lack of words at 18 months. Anyway, its good to get professional help.
You can find the whole article here.
I agree with bigwhitehat's comment that the author is not attacking parents, but trying to help them recover emotionally from the distress caused by our society's ugly autism stereotypes.
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