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posted Thursday November 11th, 2010

I’ve been thinking about Megan a lot, lately.

I don’t know much about her — only that she has Down syndrome, and she went to our elementary school for a while several years ago. I’m not even sure I’ve ever seen her, although for some reason I have a clear picture in my mind of an awkward little girl with disheveled dishwater blonde hair and round glasses, her head cocked to the side.

But Megan’s a real kid for sure, a couple years older than Annabelle, maybe even in junior high by now. She started in kindergarten at our school, just like Sophie did. And by third grade she was gone — off to the school that houses our district’s program for the mentally impaired.

That’s what happens in third grade. Those cute little kids with Down syndrome who were mainstreamed from the beginning — pinned with grand hopes of inclusion — fall behind academically, and it’s time for them to go.

Megan went.

I’m told Megan and Sophie don’t have much in common beyond dishwater blonde hair and Down syndrome, that Sophie’s “higher functioning” than the older girl, but still I can see the writing on the wall, or rather, the not-improving handwriting on Sophie’s incomplete assignment sheets, and I can bet what certain people at our school (even well-meaning people, people who love Sophie) have in mind for my little girl.

The MR room.

And that might be okay, it might be best for Sophie, it might even be that that particular program has improved dramatically since I took a tour and ran screaming from it when Sophie was 4 and we were considering elementary school options.

But I’m not sure. And to be honest, I’m also not sure that my feelings about this whole thing aren’t more emotional than practical — more social than academic. A couple weeks ago, we attended our school’s fall festival. Both my girls had fun, but Sophie truly had a blast. She hung out with her best friend Sarah, which was cool; but even better, everywhere we went, everyone knew Sophie. She knew them. And not just to give stereotypical DS hugs. This is Sophie’s world. She travels it effortlessly (I don’t kid myself that some days are harder than others, but still) and she thrives in it.

I feel so guilty. I feel guilty because in some ways, I worry I’ve set her — set us — up for failure and disappointment. I knew academics would get tougher, I know the school is unprepared, in so many ways, to keep Sophie, and yet I got attached. I got Sophie attached.

Now what?

The other night, when Annabelle was finding every excuse in the book to avoid her homework, I told her, “You put the `pro’ in procrastination.” I should know – too bad procrastinating’s not an Olympic sport. I’d win. But this time, for once, I’m not wasting time.

That special ed lawyer I mentioned last week? She came to the house this morning, to meet us, review Sophie’s IEP and talk about options. Things aren’t so bad, she told me, after our chat.  I know, I replied. But I need to be ready for third grade. Sophie needs to be ready.

I owe it to Sophie to figure out the very best place for her, and to get her all the resources she deserves. And if that means showing up at the next school meeting with an attorney (albeit a gentle-seeming one) I’ll do it. I’ve looked for years for just the right advocate; today I think I found her. (And if you live in metro Phoenix and you want her contact information, email me and I’ll be happy to give it to you.)  

This woman spent two hours with us. She reviewed Sophie’s goals, her test scores, her drawings, talked to Sophie — even submitted to a spelling test by Sophie — and asked her good questions. Asked me good questions, too. She talked about the resources Sophie will need to do well in third grade; she doesn’t think it’s so much, or too much to ask for. It’s true, Sophie’s reading at grade level. Her test scores aren’t bad. The lawyer left me with a managable “to do” list.

She was impressed with Sophie, even though when she asked her what she want sto be when she grows up, Sophie told her she wants to be a whoopie cushion. (What happened to wanting to be a phlebotomist? I asked in dismay. Sophie just smiled.)

At the end of the fall festival, we drove Sophie’s friend home. “I love you, Sophie!” Sarah called as she ran from the car to her house, saying it so naturally, so sincerely.

“I LOVE YOU BFF!!!!!” Sophie screamed back, full of more emotion than I thought any creature could hold.

I don’t know if Megan had a BFF at our school, or if she has one now. My mom told me the other day — always trying to make me feel better — “Remember, Sophie makes friends easily. No matter where she winds up, she’ll be okay.”

I know she’ll be okay. But I also know we all want her to be more than okay. I’m just not sure how to make that happen. At least we have a little time to try to figure it out.

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Tags: Filed under: Down syndrome, public school by Amysilverman

8 Responses to “Megan”

  1. I hear you! I have no idea how to make this better, either – but I hear you loud and clear. This makes me sad to think we have to even make these considerations. That, in and of itself, sets apart. Enough said.

  2. Amy,

    Do they not mainstream the kids in Arizona? They do in Connecticut. I just assumed that was happening everywhere. I can’t even believe that’s a possibility for Sophie. I’m in shock.

  3. they mainstream — somewhat. their idea of mainstreaming is to segregate all the MR kids in the district at one school, where they have a mix of inclusion with the typical kids at that school and pulling out. i can see many reasons why this is done — mainly financial. it means, however, that the child will likely not be at her home school. that would be the case for us.

  4. Can I ask what sort of accomodations the atty is recommending (or that you think she needs?)? An aide? If she’s reading at grade level, does she primarily need help with math? Is it a finishing-within-the-alloted-time issue? Or the “activities”? (my oldest is only in K, so not sure what the “activities” would be in 2nd grade….). Sorry I’m prying.

    Am also very curious about Megan. Sounds like you know people in common, or could find them? Since, you know, you’re a journalist (friendly pushing? Is that selfish?)

  5. Well, 3rd grade was indeed the hardest year for us and we got some vibes about changing to the school with a “resource classroom” but (and I won’t judge you whatever you do) we thought long and hard and decided that there is more to school for Kayli than academics, she is like Sophie in terms of this school is HERS and we could not take it from her without some really good indicator of need. Kayli is not suffering, she is steadily learning and 4th grade is turning out to be fabulous! She is not as good a reader it sounds as Sophie- I don’t care. At personal reading time the teacher has set it up that she and a peer read together, she goes out for one on one time happily for a total of about two hours, she joined band (her initiative and I can’t say how it’s going to go :) and she is a main member of the jump rope team. She has playdates and b-day invites. This year we presented to her class about DS and they loved it!
    If we had thought that the resource room option was the right one we would do it and who knows, perhaps next year will be different. But I’m holding out until middle school! The teen across the street went to the resource room and they loved it, felt it was a perfect decision for their child.
    I think that if you just ignore the pressure to go elsewhere and have reasonable requests for accomodations (we have a 1:1) than they should respect that. Hugs…

  6. You’re not prying! (And even if you are, I’m certainly asking for it!)
    We don’t know yet what the attorney will recommend, as it turns out I didn’t even have a full copy of the IEP in my files. So right now we’re in info-gathering mode. Then I’ll know more.
    And this might sound bad, but from what I hear, there’s not enough similarity between Sophie and Megan’s situations to warrant a meeting…. And to be honest, I’m not sure I’m prepared to hear what is going on with her. I’m pretty precariously balanced psych-wise, just dealing with Sophie day-to-day. I know that’s not the most self-flattering thing to say, but it’s true….

  7. why do my role models (in so many ways) have to live on the other side of the world, practically?! THANK YOU for this.

  8. I’ll write a post on our whole school process if it’s helpful.

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