It's been a rather trying morning. Zoe-Mai spent the majority of it screaming and working herself into a frenzy that she has finally settled down. We've been having a good bit of cold weather so we spend most of our day inside bundled up and I can tell she's getting a bit of cabin fever.
Not much has gone on this week, but recent conversations have had me thinking a bit too much about one question- How do you talk to your closed off SO about your child who is somewhere on the spectrum?
The day it was confirmed that Z0e-Mai was autistic I came home from the doctor crying. I tried to put it as gently as I could to Jeremy that our beautiful little girl would have a very hard life ahead of her. That she wouldn't be normal and would likely be dependent on us for the rest of our lives. All that ended up happening was being set off into a tail spin of blaming ourselves- telling ourselves if we had done this differently, had we done that differently, had we sent her to daycare to have interaction with other children it would all some how have been different- and me trying to explain to Jeremy who knew very little about spectrum disorders at the time, that Autism does not mean retardation, it does not mean low IQ.
It just means different. Different way of learning, different way of seeing things, a different kind of love.
If you read the poem in my previous post, 'Welcome to Holland', it talks about the death of a dream, and in truth...that is what an autism diagnosis is. You suddenly see the life you had imagined for your child slipping away. The birthday parties full of her friends, school activities like spelling bee's and plays, the prom, college, the wedding, their future kids- it all seems so distant because the only thing you can think of is just how much harder life is going to be for them.
In a way, the diagnosis was harder on Jeremy. In my heart I had already accepted that Zoe-Mai was different. I would tell him that something isn't right, this isn't normal. He would say,"That's what everyone said about Kenzie and look at how far she's come!" I would tell him that she's showing so many signs, her spinning, flapping, screaming, and not talking, not wanting to be held, her weird pain triggers and how brushing her hair was more painful than her falling down. Jeremy's only words could be that everyone thought something was wrong with Kenzie, but look at how smart she is, look at how much she can do.
It's been well over a year since Zoe-Mai was first diagnosed. It's still painful for Jeremy to open up and talk about Zoe-Mai's autism. He doesn't like to watch the videos online or read any articles. I've noticed he doesn't really mention her future anymore. He use to joke so much about how all the boys were going to fall for her and how he thought she would be the first to be married. I think he realizes subconsciously that her future, barring any vast improvements, is with us.
I hope one day he will open up this part of our life to me because there is so much I want to tell him and so much I want to show him that Zoe-Mai CAN do. I don't want him to get so lost in the grief of all the things that she will probably never be able to do and forget that there are things she can.
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