The Airing of Grievances

posted Wednesday December 6th, 2017

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Sophie’s lawyer asked me to write down some concerns in anticipation of her annual IEP meeting next week.

(IEP stands for Individualized Education Plan — the living legal document that guides/dictates the educational life of a kid with a disability.)

I smirked. Perfect timing for an airing of grievances.

I started this blog to catalog Sophie’s kindergarten year — and kept going. This past August she started high school, and I’ve been uncharacteristically quiet. Yes, it’s natural to pull back on the details as your child gets older, or stop writing altogether. There are a lot of parenting blogs gathering dust out there in cyberspace. But that’s not what this is about.

I haven’t known what to say. At first I didn’t know what to say because as high school approached, I didn’t have a care in the world. This terrified me because the last time I feel that calm was right before Sophie was born and diagnosed with Down syndrome and a heart defect.

We’d spent so many months years planning, stressing, applying, questioning — there was nothing left to do but shop for school supplies.

And then, two weeks before school started, Sophie’s lawyer called to say she was closing her practice. I hung up the phone and sobbed. This woman had been Sophie’s only legal representative — we’d waited till third grade to hire an advocate to fight for a classroom aide and to stop the emphasis on test scores that said so little about my kid. “You’ve got this,” the lawyer promised. “You don’t really need anyone.”

It’s true that at that point, everything was in place. School started okay. Sophie was on Cloud Nine, fueled by the fact that she had left the middle school dress code behind. As we pulled into the school parking lot the first day, she cranked a Taylor Swift song on her phone:

You take a deep breath
And you walk through the doors
It’s the morning of your very first day
You say hi to your friends you ain’t seen in awhile
Try and stay out of everybody’s way
It’s your freshman year
And you’re gonna be here for the next four years
In this town
Hoping one of those senior boys
Will wink at you and say, “you know I haven’t seen you around, before”
Sophie’s aide was waiting in the appointed spot — definitely not the image conjured by Swift’s independent teen lyrics. I drove away with tears in my eyes, rueful over the fact that Sophie’s high school experience looks so different than it does for most kids, but happy that she seemed excited about it. She tried out for cheer and the spring musical and didn’t make either, but loves her choir and dance classes, and, I’m told, knew pretty much every kid on campus after the first month
And then, six weeks after school started, Sophie’s aide left her job.
This woman had been Sophie’s only aide, the one hired after we’d brought the lawyer to that third grade IEP meeting. The aide — one of the most amazing people I have ever met — had followed Sophie from elementary school to middle school to high school.

Just like that, one day she was gone.

(This was not her fault — and her leaving had nothing to do with Sophie.)

Without the lawyer, without the aide, I felt like I’d been instantly transported to a tightrope miles above the city, Sophie in my arms. Sophie’s small for her age, but by no means can I hold her these days. Definitely not without solid ground beneath me.

The free fall hasn’t been fun.

I had no power over who Sophie’s next aide would be. But I did get to pick her next attorney. I met with a friend who’s also a special ed lawyer. “I can’t help you,” she said. “I’ve never known a kid with Down syndrome who’s been mainstreamed in the classroom as long as Sophie has.”

Today we have a super lawyer; hopefully she will still be our super lawyer after she reads my list of grievances.

And Sophie has a new aide. The woman seems sharp and kind. Sophie likes her. They do not have the rapport that only comes after six years together all day, pretty-much-every-day. But they’re getting there.

The damage of three weeks of substitute aides and what I’ll euphemistically refer to as “communication challenges” has not been undone. High school is hard, really hard. I think it can work. I hope it can work. It can work. I need to make it work for Sophie. She loves the school; I just have to make sure it loves her.

Easy, right? If you’re looking for me, I’ll be the one holding my breath till after that IEP meeting.

 

 

 

 

 

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Tags: Filed under: Down syndrome, Uncategorized by Amysilverman

2 Responses to “The Airing of Grievances”

  1. Good luck with all of this, Amy. I marvel at all Sophie has accomplished.

  2. Sophie is a gem who is well-loved. No child has ever had a finer advocate than you. I am proud of your efforts. I will hold my breath with you. xo

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