Wanted: Guardian Angel for Cute Kid with Down syndrome

This morning I snuck (sneaked? snook?) out of bed, leaving both girls snoring.

A real feat, the first time since Sophie’s been in her big girl bed. Every morning, it seems, she comes to us earlier. Ray calls it the “snuffle shuffle” and it’s true, she’s blessed with our noisy sinuses and who can blame her for dragging her feet at 5 a.m.? I know I do. (This morning it was 4:37, for the record.)

Usually the slightest movement from me wakes her and she’ll go instantly from deep sleep to “I’M AWAKE I’M AWAKE I’M AWAKE” at eardrum bursting decibles. A colleague at work said, “It’s like that coyote ugly thing where you wake up the next morning and have to chew your own arm off to get out of bed without that person you slept with noticing.”

That colleague does not have children. Still, I get her point.

I didn’t get the hour alone I’d hoped for, but I did get enough time before Sophie’s head popped up in the kitchen door to read a good book. The title: “My” by Sophie.

With no prompting from her or anyone else, I was able (though to be honest you might not have been) to tell that she wrote about “My family,” “My bed” (why don’t you stay in it if it’s worth writing about, was my thought there) and “My teacher.” Here’s the teacher one:

my-teacher

Not bad, huh?

I had a comment from a reader today who wanted to know why Sophie’s IQ was tested at such a young age.

I did a piece on this last summer for This American Life. (It’s the third piece on this show: http://www.thisamericanlife.org/Radio_Episode.aspx?sched=1249)

I think I have a clearer  (still muddled, but less so) answer to the question now, though. Probably the short answer is that I suck as a parent and didn’t fully investigate my legal options before signing the paperwork.

The long answer is two fold. It involves the school system, and also state services. And the option of hiring a lawyer, making  a lot of enemies and enduring a protracted battle (years, maybe) to get what Sophie really needs.

From the school perspective, a year ago when this all came up, I wanted the option of sending Sophie to our neighborhood school, where she could have Ms. X (pictured above, sort of), who had been her older sister Annabelle’s teacher and already knew Sophie and wanted her in her class. But the district was pushing us to send Sophie to a pull-out program for special ed kids, held at another (I’d say inferior, and the stats on the school bear that out — more important, it’s not the village we’ve been building/gathering for our family) school.

In that case, it behooved Sophie to not qualify as mentally retarded. She doesn’t technically qualify for that program. I know, I know, you can make your IEP say whatever you want it to, but not under our principal — and while in the abstract I’d always pictured myself as the parent who would sue, picket, scream, etc., it’s just not the same when your kids are involved. They have to face these people — these people you’ve snarked at, or worse — every day at school without you there.

I’ve had to temper myself. And if you know me, you know that’s not my style. I mean, I take no prisoners when it comes to cab drivers, store clerks, waiters. That’s not to say I’m still not bitchy in IEP meetings. I am. But I try not to, as I’m fond of saying at work, “freak the fuck out” on anyone.

So we wanted Sophie at the neighborhood school, mainstreamed. Yeah, I would have loved to have an aide. (I probably did wimp out too early on that one.)

That’s the school. Now there’s the state. And that’s where we’re really screwed. The state of Arizona has standards for providing services to developmentally disabled children. You have to fall into one of four categories: cerebal palsy, epilepsy, autistim (NOT PDD or Aspergers), or mental retardation.

Having Down syndrome doesn’t qualify a kid as developmentally disabled in the state of Arizona. From what I hear, this has accounted for some nice cost savings for the state and it pisses me off to no end because Sophie desperately needs speech, occupational and physical therapy and I don’t personally see the cognitive link alone on any of those — her other challenges that come from DS account for those needs.

When she was 3, the qualifications were not as stringent; a caseworker screened her quickly and approved her for services. At 6, it’s a higher hurdle. They want an IQ score if there’s any question. I asked the pediatrician, can you just write down that she has DS and is retarded? No. In the end last year, the school psychologist wrote on the paperwork that it was believed Sophie was mildly retarded due to early intervention services, but that won’t work. The  caseworker wants scores.

It could be that this is just the way it was going to be, no matter what we did. Or it could be that I majorly screwed up everything. Lately I’ve been thinking about advertising for a guardian angel for Sophie — she’s got a great teacher, amazing therapists, wonderful friends, good doctors and a family that loves her, but I’m not sure that’s enough. I need someone whispering in my ear, telling me what to do.

If you know one, please send him or her my way.

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3 Comments

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3 responses to “Wanted: Guardian Angel for Cute Kid with Down syndrome

  1. Sue

    Someone retired who worked with DD kids or a retired teacher…a volunteer. (Go to the retirement center closest to your home and ask) even 2 times a week would help. I Know that there is someone out there. My Dad read for years with kids at a Elem. school.

  2. Robert Polk

    Perhaps you can find access to an organization like this:
    http://www.advocacyinc.org/index.cfm

  3. That’s just weird. I don’t get why epilepsy automatically qualifies. I’ve certainly known people who had epilepsy but not developmental delays.

    Maybe there’s more to it, but I’m surprised that gets an automatic yes but DS doesn’t.

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