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Selfish Desire

May 28, 2012

Verbal ability is a highly overrated thing in a guy, and it’s our pathetic need for it that gets us into so much trouble.
~Becky in Sleepless in Seattle (Rosie O’Donnell’s character)

A man should look for what is, and not for what he thinks should be.
~Albert Einstein

I am frustrated. I feel as though I am fighting with Mary’s team of ABA therapists. They think they know what is best for her. They challenge every parenting decision I make. They seem to think it entirely appropriate to warehouse her in a school that strongly resembles an institution.

They came late to this party. They didn’t know her before. They didn’t know the vibrant, smiling, signing, speaking, waving, engaging child that she was. They look at her as “low-functioning.” Those words churn my stomach.

I wonder if wanting her to speak is selfish. Then I wonder if accepting her as non-speaking is possibly more selfish on my part, as it seems to close so many doors for her. But is forcing speech on a child who cannot talk then the same as forcing our own ideals of what she should be onto her, instead of celebrating exactly who she is? It’s an important question to consider when discussing plans with these “experts.” I’ve wrestled with it repeatedly, and I keep coming back to the same conclusion. She doesn’t need to speak to be understood. She simply doesn’t. And that shouldn’t make her low functioning.

We looked at another preschool last week, if you could even call it that. It felt like a nursing home – and not a nice one. The transition director there wouldn’t put Mary in the autism classroom, because she felt that she would be “safer” in the classroom for children with neurological impairments. This school touts its strengths in adaptive communication devices, and the director assured me that many of the children in this class use them. They were in the middle of a lesson when we walked in, and not one of them had a device available to them. (huge red flag to me). I won’t go on and on about just how completely awful that school would have been for Mary – to the point of being damaging to her.

The thing that really boiled my blood was that her ABA team somehow seemed to think it was the perfect place for her. No one on her Early Intervention team agrees. It worries me that the people who are supposed to be taking the lead on her developmental progress seem to be throwing their hands up in the air, advising me to essentially institutionalize my baby girl. It would appear that they simply do not see the enormous potential she has. They think she should be warehoused.

I have tried to keep myself away from the computer. To keep myself from spilling this anger onto a page, but it is consuming me. In the midst of our extremely hectic end-of-schoolyear excitement, I have felt this pit of frustration building. Just because she doesn’t speak, she is labeled as less.

Meanwhile, it feels as though have been bombarded lately with requests for donations to her previous school. They are on a fundraising/ publicity campaign to raise awareness that any child can be a “speaking miracle.” Any child except mine, apparently. Obviously, they believe very much in their mission, that speech is necessary for communication. I can’t blame them for promoting their school. After all, it’s not personal, it’s business. But it stings. Each time I see one of their billboards, receive an email or read a Facebook posting.

Because they gave up on my girl. One more team who failed to see her potential, simply because she is without words.

And in the long run, that’s for the better. They couldn’t help her speak, and I never really agreed entirely with their philosophy. But the hurt is still there, the wound still open and raw.

And she is still without a village.

We are pinning our hopes on the School for the Deaf that I wrote about here. It is a risk. It is against the advice of some of her team, but heavily favored by other members of her Early Intervention team. If she can’t fit in there, I simply don’t know what we will be able to do further down the line.

One thing I do know. Right now, as confusing as this process is, I am so grateful to be going through it. I am so grateful to be planning her future. Just a little at a time. As I explained to one therapist who was set on sending her to the other school, I want her to have fun. We are still without a diagnosis. We still don’t know what we are up against. Every stumble, every hiccup, reminds me, that right now, she is well, and I have no way of knowing how long that will last. I want her to be happy. I want her laugh. I want her to smile. I don’t need her to be challenged as much as I want her to be celebrated, just as she is.

On that note, I will confess that part of the reason for my absence from writing over the past two weeks is that we have officially booked our trip to Walt Disney World for the fall. I have been busy snatching up reservations for various dinners and performances. The kids don’t know we are going. It will be a surprise that morning when we get into the car! I would love any tips anyone might have to offer. I will offer one of my own, a website I was referred to called Autism at the Parks, written by an autism mom with loads of great tips.

2 Comments leave one →
  1. mamabear99 permalink
    May 31, 2012 1:44 pm

    Hi. Thought I’d drop by and read a bit about who you are after your awesome comment to me this morning on Jess’s support page 🙂

    Thank you for the tip to bring a picture…I am definitely going to do that. That is awesome.

    Now, these are just general tips for Disney…not specific to people with special needs, but the lady who wrote them has been to Disney like 5 million times and she seems to know the ins and outs of practically everything. I hope there is something you find helpful in her tips.
    She has other things on her site too…you might check it out.

    Again, thank you for taking the time to leave me a comment. God bless you! I will keep you in my prayers too.


    • May 31, 2012 1:50 pm

      Thanks!! I will check that out. I am getting way too excited about it. My husband tells me I’m perseverating. 😉
      Good luck today. Let us know how it turns out.

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