And while I do not want to spend much time with negativity, especially on here. I do need to address something.
I touched on it briefly in the last post, well, the post before my Christmas letter "dilemma" (which did get written this year and hopefully it sounded nice and thankful and not depressing nor fake).
How do you know that what your doing is actually working?
There it is, folks. There it is. The question that has been resurfacing.
And it should be clear as day. It should be SO obvious that the question should have never left any one's mouth. But objectively speaking, someone walking into our world after not knowing Maddy for the last 2.5 years, probably does have a valid point............if they didn't believe a word that came out of my mouth about how she was.
This is what is so infuriating for me. I do not know a single parent that wishes their child had a disorder. None. No one sits around wishing and hoping for their child to have a special need so they can gain attention. If they do, they should be committed. But I can honestly say that ALL sane and good-intentioned parents DO NOT.
I didn't make up some story about how Maddy was before all of the intervention. I don't feel the need to seek attention this way. I would love to be doing a BILLION other things with my life. Really. I would. I would love to spend a fraction of the amount of time that I do on Maddy, with my other 2 kids. I would love to be able to go places and not worry that Maddy will get overstimulated. I would love to be able to brush Maddy's hair and know that when she tells me "OW, Mommy." it's because it's snarled and not because she cannot stand the sensory feeling of getting her hair combed.
How do I know it's actually working?!
Look.at.her.
Can she answer to her name? Can she make eye contact with you? Can she sit in a room with a bunch of other 2 year olds and make herself undisguisable?
The answer is yes. To all of those questions.
I'm sorry...i gotta let this out. It's been boiling in me for too long. I am trying very hard not to get overly defensive when it comes to Maddy and my role as Team Leader. I'm Mom first and I'm sure that does take alot of objectivity out of it. But I'm not doing this alone. I have 7 other people to make sure that I'm keeping things on track.
I think Catherine Maurice says it best here:
On the one hand, I understood some of this resistance. Anne-Marie was young, we had caught her condition very early, and we seemed to be already turning it around. It was hard for anyone who didn't live with her to believe that there was anything wrong with a two-year-old child who was now combining some words. They had no immediate way of knowing what her history had been, or how far from normal still was her overall social and linguistic development. How could they be expected to know about frequency of spontaneous eye contact, inflexibility of language, paucity of social overtures to people? They judged by what they saw, and to a casual observer she now looked perfectly normal. They thought it helpful to diminish and downplay whatever problem I was rattling on about.
On the other hand, their attitude inspired a certain defensive paranoia in me. Did they think I had made it all up? Yes, life is very boring on the housewife-mommy track. Maybe I'll con a few neurologists and psychiatrists and various other professionals into diagnosing my daughter as autistic. Create a little excitement around here.
Of course, the incredulity I was encountering at this point was nothing compared to the outright skepticism we found as Anne-Marie got better and better. It is impossible. This cannot be. This child was misdiagnosed. Autistic children do not recover. (Maurice, Let Me Hear Your Voice, 1993)Completely. Totally. How I feel.
17 years later. 17 years. 17 years?! Are you kidding me? In 17 years we have not progressed out of this? I'm still fighting the same battle that she fought....17 years later.
For arguments sake, are we still thinking the same things about cancer treatment as we did 17 years ago? I'm curious to know. (and really I don't mean to attack cancer. It's a horrible disease. Horrible. So is autism.)
I wish I could scream and shout at the top of my lungs and know that everyone was listening. Why does this need to be a battle? Why can't people just accept the awesomeness of what is happening? Why do they feel the need to argue?
Don't get me wrong, I have ALOT of people who are thrilled, amazed, excited, astonished at how Maddy is doing. I do. And I know not everyone is going to be on the same page, sentence, paragraph, page, chapter, book....as I am. I get that. I also understand that not every child will be as fortunate.
But don't tear down the ones that are.
How do I know that what we're doing is working?
Because I can look at my daughter, she can look at me, I can stroke her hair at bedtime and sing her a lullaby and when I finish, she can look into my eyes, say "nigh-nigh, Mama. Love you."
That's how.
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