website statistics

“I don’t know.”

It started as a good afternoon, a father/daughter trip down to a far away city see Schuyler’s godparents and enjoy a few days of fun. We were having lunch at a nice restaurant, and Schuyler was using her iPad to order her food.

I must admit, she was doing so under slight duress. When Schuyler is around people who mostly understand her impaired speech, she shies away from using her speech prosthesis, even now that she’s using the iPad instead of a dedicated speech device. She’s twelve, almost thirteen, and her powerful desire to pass for neurotypical has become a force of nature. We encourage Schuyler to be herself, but she has little use for neurodiversity as a philosophy in her own life. It’s heartbreaking, because “passing” is almost certainly going to lead her down a sad dead end road. If she succeeds 90 percent, she’s still a little girl with a broken brain and a disability that sets her apart from others. For now, however, as she begins to navigate the already difficult waters of her teen years, Schuyler remains deeply disinterested in exploring her differences.

But I pushed her to use her iPad, and it was going okay. The iPad affords her a needed measure of cool that her speech device never did, enough that using it publicly doesn’t cause her a great deal of embarrassment.

Well, not until her PRC LAMP Words for Life speech app began to crash. Repeatedly. And not until some basic design problems with the app and its layout caused her to accidentally clear the screen and force her to start over more than once. Schuyler was fine until technical issues (which I will most likely discuss in detail in a later post) became an embarrassment. Everyone was very patient, including our server, but still. Schuyler was desperately trying to complete a very simple communication task, and her device was failing her. It was making her look incompetent.

It was humiliating her.

As soon as she finally managed to place her order, after the server left, Schuyler’s meltdown began in earnest. Sensing where this was going, I took her away from the table, and as soon as we were away from everyone else, she began to cry. She didn’t cry gently, or cutely, either. Schuyler was sobbing, clinging to me, soaking my shirt and shaking while she cried. She was hurt, and she was angry. Angry at her iPad, angry at me for making her use the device when she could have just as easily pointed to something on the menu so that I could order for her, angry at everyone for being kind and patient while she worked through her technical problems. And angrier still at her monster. She kept pointing to her head and then signing “angry”.

Her brain was mad at her, she said.

After a few minutes of unrelenting tears, I grew concerned. Well, I grew more concerned, not about the crying but by the fact that it wasn’t stopping. I stepped back from her and put my hand on her chin, bringing her eyes to mine.

“Schuyler, ” I said, “why are you so upset? Why are you still crying?”

“I don’t know,” she said sadly, desperately.

Not casually, in the way that kids will say “I don’t know” because they’re not allowed to say “Kiss my ass.” Schuyler’s answer was a kind of pleading, a lack of understanding. They were words of desperation, born from mystery. Having said it, having expressed her confusion and her aimless rage, she began to calm down at last. long enough for me to get her to laugh through her tears and to break the terrible spell.

She didn’t know, but I can imagine why she was so upset. Schuyler lacks the words to say what she’s feeling sometimes, and she probably lacks a complete grasp of where her emotions are taking her in those moments. She’s too innocent, too guileless, to clearly understand what she’s raging against. I believe the frustration she wants to express might just be that she simply wants to be able order her stupid lunch with her own voice, just like everyone else around her, just to be able to say “I want the chicken chipotle enchiladas” without having to type it, and then retype it, and retype it again, on a device that she wishes was hers to play Angry Birds on, not to try with mixed success in some wholly inadequate and embarrassing way, to simply speak. To speak. Like people do. People who aren’t broken, who never think twice about how to say the simplest things. She cries, she rages against the world and her iPad and me and God, because we’ve all failed her. She cries because her monster is unfair, and she knows it, and the unfairness of it rankles her. If these concepts are unclear to her now, I suspect they won’t be forever.

Schuyler says she doesn’t know.

But I think perhaps I do. And knowing doesn’t help, not one damn bit.

————

Please visit Build-A-Bear Workshop’s blog, where co-founder Julia Roberts shares her daughter’s special needs journey. We’re grateful to Build-A-Bear Workshop for supporting this community over the past year.

Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.

7 Comments
  1. October 29, 2012 | Reply
  2. Ian Gordon
    October 29, 2012 | Reply
  3. PeggySu
    October 29, 2012 | Reply
  4. October 29, 2012 | Reply
  5. October 29, 2012 | Reply
    • rebecca
      October 29, 2012 | Reply
  6. October 29, 2012 | Reply

Add a Comment

Your email address will not be published. Required fields are marked *