Water Level

I’m in over my head right now—there is a lot happening with Joey, and I’m overwhelmed and stressed out and sad. So I’m not writing. Unhelpful.

Joey is going through the process of being evaluated by the school district to determine his eligibility for special education. I had a tiny internal panic the first time that a school administrator explained that they are taking six weeks to determine “whether he is eligible for services” as well as what services he might, hypothetically, be qualified for; his service providers all assure me that he will qualify, but in the meantime, I can’t quite accept their reassurance and instead lie awake at night wondering what would happen if he didn’t get speech therapy ever again. We do know that he will continue to get ABA, behavioral therapy, at least until he turns six, for which I thank God. His health insurance has been shut off again, and I have reapplied, but he needs more shots and a TB test before he can start school.

I don’t really talk to the other moms at Joey’s ABA group; I am the only poor woman, and the only one wrangling another child. But last week, one of the mothers found herself with no one else to talk to, so she came to join me, Kit, and a woman whose son was attending for the first time. All three of us have autistic preschoolers, and our sons make up a spectrum of their own: Luca is extremely high functioning, speaking in sentences and not chewing his hands or spinning in circles; Joey, of course, spins, flaps his hands, mouths things, and speaks in a double handful of poorly articulated single words; Alex does not speak at all, does not seem to register the presence of other human beings except as large environmental obstacles, and eats only three foods. Luca is turning three today, and has been denied further services; his mother is appealing the ruling, and we talked a bit about the process of evaluation. She said at one point, “I can’t imagine where they would go to preschool!” She named a handful of schools in the district–this one doesn’t have preschool, and that one doesn’t have preschool. . . . I said, hesitantly, that Joey is having his adaptive PE assessment at Blackberry, so perhaps . . . ? “Oh,” she said, “But Blackberry is all special ed.” And I didn’t know what to say anymore because, lady, my kid is going to be in special ed—and if yours isn’t, that’s probably why they’ve decided not to offer him that service, right? Luckily, awkward silence is totally my thing, so I didn’t say anything baffled or hateful; I just focused on Kit for awhile.

Both other mothers spent some time staring at Kit and commenting on how “typical” he is; it would have sounded pretty weird to outsiders, I guess. “Oh, he has such great joint attention! Did you see when he . . . ?” Both of those women have one child apiece, and there was a little longing in the way they looked at the Kittlebug. They both talked about choosing not to have other kids because they didn’t think they’d be able to deal with having a second autistic child—and I’m right there with them. I feel lucky that we had Kit before we knew about Joey, because I can’t imagine my life without the both of them. But it scares me badly to think that Kit could still regress, start losing words in a couple of months and then stop looking at me.

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9 thoughts on “Water Level

  1. I never have anything useful to say and I always want to be useful because I so wish I could somehow make things easier for you. I am always reading. I think of you and your boys often. I wish things were not so hard.

  2. That sounds really stressful and I’m so sorry! I hope it doesn’t take long for Joey’s health insurance to get reinstated, darn it all…and six weeks of uncertainty is too long with respect to the speech decision.

  3. Susie, please write. I wait for your next word, I know that it is hard, but even if it is the raw lament of your heart, know that the rest of us moms understand. While our child may not be autistic, each of us has battled something and we do empathize with you.

    Your struggles, your navigation of the ‘processes’ are helpful to someone. You never know who will read and be encouraged by you, even if it is just knowing someone else is struggling.

    I wish we could help you more. I wish you were here so I could sit and listen to you talk about how hard it is being a single parent, with little resources, trying to ‘do right’ by a child who needs his mother to be an advocate.

    Know that I am cheering you on from Kansas. And will pray each time you cross my mind. Because my dear virtual friend, you deserve all the support in the world. ❤

  4. Always reading as well and always sending you love. Wishing we could meet up for coffee and that we had done more of that when we could. oxox.

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