I few days ago, I was in an online forum where someone mentioned the possibility of not vaccinating (or changing the vaccination schedule for) a child to avoid having that child become autistic. Whenever I hear something like this, it's very hard for me not to take it personally and not to become angry. Because what is always lying beneath the surface, unspoken, is: "Autistic people are damaged, they're 'less' than other people. And I don't ever want a child like that. I want a nice, normal, whole child, not a strange, sad fragment of a human being."
On the one hand, I understand where these parents are coming from; if you had asked me ahead of time, I wouldn't have chosen to have a child with special needs. I wouldn't have chosen to go through all those doctor visits and IEP meetings and therapy sessions and battles with insurance companies. I wouldn't have chosen to worry about whether or not my child will be able to take care of himself. Of course, I didn't have a choice in the matter and "normal" isn't quite where I ended up, after all.
But now that I'm here, I'm so thankful that I am, and I wouldn't choose to change a thing. I wouldn't "cure" my son if I could. I can't separate him from his autism. He's beautiful as he is and the way he sees the world is beautiful. He has enriched my life and made me a better person in ways that knowing a whole host of typically developing children never would have. Why wouldn't I want all that? (Should I answer my own rhetorical question? Oh, why not.) I think part of what I was scared of was the unknown. Well, not entirely, it was the unknown and hard work.
I feel like instead of getting a child who was born to speak English, I got one who was wired to speak Turkish. It's different. It's more work. But it's not bad. To my surprise, I'm putting a lot of effort into teaching him "English," something I thought kids just picked up without any effort on their parents' part. And am now learning "Turkish," which has turned out to be wonderful, if difficult and frustrating for both of us at times. I have the opportunity to learn this whole cool new language, to expand my world, to see things in a new way, to learn. My son may never learn to live in the English speaking world, and the English speaking world may never learn to accommodate his Turkish, but even so, his life will still be worth living and will still enrich the lives of those around him.
All this gives me an uncomfortable feeling when people say they don't want to vaccinate their children, because they don't want them to end up autistic. It's as if they are saying they don't want their children to end up to being minorities, being unpopular or gay or left-handed or atheists. They're saying they don't want a child who is different; they're saying they don't want a child who requires extra thought; they're saying they don't want a child like my son. And they're saying it's in their power to control that.
i was talking to someone the other day who had a son that was just diagnosed as autistic. she and i were discussing vaccinations. she firmly believes that that is NOT what caused it. she believes that, due to mothers nutrition and also, advancement in medicine...some babies that may not have survived, such a major premies, are surviving now which is perhaps why there is so much autism. i have a good friend who, out of her 3 kids, her oldest and youngest, both have autism. she doesn't believe it to be vaccines, either!
take care. your son is so lucky to have you!
p.s. don't get mad but...i'm tagging you, ok? just seven random facts about yourself. i don't have very many blogging friends, like the girl who tagged me so...please?
xoxo
Right now I admit that I say, I would like a "normal" child. I've examined this "desire" and I'm pretty confident that it's not because I think people with disabilities are any less human or that us "normal" folks are superior. I'm quite scared that I would be a horrible parent to a child with needs, as in, I wouldn't know what to do and that I wouldn't provide enough care and special services. However, I know that if I'm lucky enough to conceive a child, that will be the child I'm meant to have. If the child is born either with or without special needs, I'll know it happened for a reason and I'll rise to the occasion and do what needs to be done. I know in my heart that I would never love a special needs child any less than a child without special needs.
MPJ,
My son has a friend who is autistic and whose family IS Turkish! (ha ha - I guess they're learning Mandarin, too.)
I believe it is not that much the wish of the parents to have a "normal" child, but the hope to spare their child some of the challenges that special needs will throw in his way.
Parents here in Germany are now getting vaccines for their girls to possibly prevent cancer later in life. I sometimes wonder where that will end.
Would my parents have given me vaccines to avoid my depression? To stay slim? Will parents try to influence the smartness of their child? Would a vaccine have influenced TJW's choice in men?
I know that while some parts of me can be difficult, they are still ME. I learn from those experiences - and who knows, there must be a game plan somewhere.
I think the real challenge lies in not just accepting what you cannot change, but love what was given to you.
That is what you have, and what your son has...
Bravo. You cover the ground where you stand.
I have a friend who has a very young recently diagnosed Autistic child. She gets a lot of support from a mothers groups for Austistic/Aspergers spectrum kids, and last week she said "Funny they're all older mothers" and continued "Guess that's what you get for being an older mother". Then I opened my big mouth (being an older mother myself) and said "Well I find a lot of older mothers who have had to wait, are so patient and just grateful to get a child at all" To which she said "Hrrumph" and I realised what I had said. I.e there is something wrong with an autistic child, but older mothers just have to settle for it.
My brother is autistic and my mother often blames it on a bad bout of measles he had before he was 1 (not the injection - but same theory). His development was very much as you describe. He was a seemingly normal, lovely looking child who started to learn to speak or seemed to and then just stopped developing, we kept hoping and it was years before he was diagnosed.
Im with you sister!
My son speaks marshan!
He's very lucky to have you
I particularly liked your final point. The amount that people feel they can control has really got out of hand now, in my opinion. Acceptance is key.
I am left speechless with this post mpj. You are very well spoken. It annoys me that people say such thoughtless things, and how we can attach to possibilites as quickly as we do with out really understanding (that's ignorant). I love my babies, my girls so much. From the second they were born a force came over me that was so overwhelming. All I saw was love. It would never have mattered to me what language they spoke, I would have learned it and we would have shared.
But, I also share the fear that I wouldn't do it good enough.
I feel ignorant talking about it all from the other side of the fence
But, from over here, I just see that you are a beautiful mama and wanted to share with you.
Strumpfkunst, if I could have been vaccinated against depression I would have chosen to do so. My weight? Maybe, maybe not.
I simultaneously feel gratitude that my child has avoided the challenges of autism or profound dyslexia or disabling anxiety, all of which I see in my community, and guilt over that gratitude. My relief is more about my own capacity than anything else, I think. Adoptive parents also end up with the kid we get, although people sometimes assume we have more control over the process than we actually do. But I didn't choose to adopt kids from the foster care system because I was afraid I wouldn't be able to effectively parent a child with those particular challenges.
So yes, I feel selfish and stuck-up and elitist, and sometimes I also feel as if I'm judging or belittling other people's children. What I feel most strongly is awe and wonder at the ability Mary has to give her son what she needs. Not her love so much, but her clear-eyed assessment of his abilities and his needs and her willingness to see and accept him as he is. He doesn't need to be different than he is in order to be loved, and that's a gift not all of us can give our kids - or ourselves.
This ached inside, it was so beautiful.
We just don't get to pick and choose. We love the whole, whatever that includes.
Powerful, powerful words you wrote here.
Turkish? That is so amazing to me. I think you are dead on about how enriching this experience is and can be if just allowed to be—which you are clearly and admirably doing.
There is a lot of new-agey, woo-woo information out there regarding the possibility that we choose our experiences before coming to this existence. I cannot help but feel your situation is a great example of the validity of this belief. The unknown and hard work is indeed a very scary thing but it is also a very rewarding thing.
I stopped going to online forums a long time ago because they're full of so many varying opinions and many hurtful ones. I'm glad you see your son as what he is: a beautiful gift.
Those things we don't understand, scare us. Especially when it comes to kids.
I can wade into a room full of junkies and alcoholics with all the confidence in the world- interventions, speaking, and writing it's my thing. But autism, what little I know of it wouldn't fill a thimble so I am wary... and unfortunately still have an opinion no matter how uninformed it's basis. But thanks to posts like this I am learning more.
Keep it up MPJ, you are opening doors and minds with your blog.