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Down syndrome and Junior High: Here We Go

posted Sunday August 10th, 2014


All summer long, Sophie was obsessed with plays — buying them, reading them, casting them.

Because our local bookstore doesn’t stock any kid-oriented scripts, Sophie’s collection is a little odd for a tween: Our Town, the collected works of Neil Simon, and The Miracle Worker. Odder still for a kid with Down syndrome. I’m not honestly sure how much of this stuff she can actually read and comprehend. Enough, I figure.

Enough to ask some good questions.

“Where are all of Helen’s lines?” she wanted to know one day last week.

When I explained that Helen Keller doesn’t have any lines, and reminded Sophie of the details of the play — which we saw this summer — she shook her head and informed me she’d be writing some herself because she intended to play Helen, and it wouldn’t do for Helen to not have any lines.

“And Mrs. W. will be Annie Sullivan,” she told me.

“Perfect,” I said, smiling to myself.

Mrs. W. (we typically call her by her entire name, but I won’t here) has been Sophie’s instructional aide at school for the last three years, grades 3-5, and last week she joined her for sixth grade. She is the reason Sophie is being mainstreamed at our neighborhood junior high, in regular classes with typical kids.

That is a pretty strong statement, but it’s true. There is no way I could have sent Sophie off to school this way — absolutely no freaking way — without this woman by her side.

And not by her side, because that’s the beauty of Mrs. W. A lot of people will tell you that a one-on-one aide is a bad idea, that federal law prescribes that a kid with a disability be placed in the “least restrictive setting” and that an aide automatically precludes that from happening. They are wrong. What they mean to say is that an aide is automatically expensive. Very expensive. Guilt-inducingly expensive, if you are me.

And, if you are Sophie with Mrs. W., worth every penny of the government’s money.

We held back on asking for an aide for Sophie until third grade, at which point I hired a lawyer, deciding we had to make this happen quickly and decisively. To my surprise, the plan worked. Boom. Sophie had an aide. And to be honest, I knew I was playing with fire. The whole thing could have been a disaster with the wrong person. But along came Mrs. W. — they should use her as a role model in training aides (which doesn’t really happen, from what I can tell). Mrs. W. is experienced in education, calm but firm and knows when to push in and more important, when to pull back.

She also knows Sophie. As elementary school drew to a close, I spent several panicked months trying to figure out where Sophie should go to junior high. The neighborhood school was emerging as the only real viable option, but I was terrified of what I’d heard: more than 1,000 kids and not much history mainstreaming the way we wanted to mainstream Sophie.

And then one day I ran into Mrs. W. in the hall at the elementary school.

“You know,” she said quietly, “I’d be willing to go to junior high with Sophie.”

I got in the car and called my mom.

“Do you think I can I stop looking for a school now?” I asked, feeling the weight of Sophie’s future — her immediate one, anyway — lift from my shoulders. For the first time in weeks, I could breath.

Mrs. W. has been at every planning meeting. She asked for a copy of Sophie’s schedule so she could contact each of her teachers before the year even started. We attended “meet the teacher” together and coordinated morning drop-off and afternoon pick-up.

This school is very good. Better than I expected. Sophie has choir and visual art every day (her sister was jealous of the latter, which she doesn’t get at her fancy charter school) and from the principal down, as we entered the school year the staff was kind and responsive. The gifted kids are segregated in their own private building, but all kids at the school are considered on the path to college and the stress of that challenge shows on the faces of the adults charged with making it happen. Sophie’s school ID says “2025 college graduate” on it.

By the end of the first week of school, I was feeling cocky. Things are going so well, I marveled Friday afternoon as I walked up to the office for the first team meeting of the year — a gathering of administrators, therapists and teachers. Walking in, I realized that the only person I really knew in the room was Mrs. W. I took a seat next to her and took paper from my calendar to take notes, trying not to let anyone see how nervous I was.

Introductions were made around the table, and the first to speak was a teacher wearing a purple tee shirt with the slogan, “I’ve got college on the brain” printed on the front.

So you have Sophie here for the social aspects, not academic, right? she asked.

Here we go, I thought.

Well, I said, stammering a little, yes, sure, socialization is important. But I don’t want to give up on academics off the bat. Wouldn’t there be modifications made to the curriculum?

This woman just wasn’t sure about that. Understandably, it was the end of the first week; she didn’t know Sophie well, she explained. But then she went on, clearly having already made up her mind about my kid.  She explained that her class is very fast-paced, that by the end of the first semester, the students will have learned 6,000 new vocabulary words. That they were expected to take a lot of notes. The text book is tough to read, she said, adding that she’d reviewed Sophie’s scores and noticed her reading level was in the second to third grade range. She just didn’t see how this would work. Furthermore, she said, Sophie had actually gotten up out of her seat once during the week and headed for the door.

I felt my face get hot. I knew Sophie had slipped below grade level a little in her reading, but I didn’t know how much. No one had ever told me that. I didn’t know what to say. “Don’t judge my kid by her test scores” seemed a little defensive. We were one person in and I’d lost my way in this meeting, begun to doubt this entire decision. I looked at Mrs. W.

She jumped in without missing a beat, explaining gently how Sophie’s curriculum had been adjusted during elementary school so that, for example, she might not learn every vocabulary word, but the most important ones. Heads nodded around the table.

Oh, and the door incident? Mrs. W. explained that. Someone had knocked, and Sophie had gotten up to answer the door. She’d returned to her seat as soon as she was asked to.

We all agreed that it was too soon to make any final decisions about modifications, that this was just a meeting to get acquainted and open lines of communication.

The rest of the meeting went pretty well, and I tried to focus on what the other teachers were saying as that first teacher’s words played on a loop in my head. I finally felt better when we got to the language arts teacher, new to the school this year.

Now, I AM NOT A RELIGIOUS PERSON. If you have read this blog at all, you know that. But this was one of those moments that makes you feel like the universe is looking out. The language arts teacher, who had slipped into the meeting late and is new to the school this year, explained that before becoming an elementary school teacher, she had two primary interests: teaching ballet and researching Down syndrome.

At my behest, she gave a quick but lovely explanation to the group of what it means to have Down syndrome — of how it affects every bit of your physical self, of what the cognitive challenges are, and of how much people with DS can accomplish. She told everyone how thrilled she is to have Sophie in class, that she had already purchased a wide-rule notebook to accommodate her handwriting challenges and that while she gives pop quizzes, Sophie would always have time to prepare. She feels confident, she told the group, that Sophie will succeed.

The school psychologist suggested that perhaps the language arts teacher could give a presentation about Down syndrome to the entire staff at the school. I think that’s a great idea.

After the meeting, I looked around for the language arts teacher. I wanted to talk to her more about Down syndrome, and ask her about her ballet training. But she’d disappeared, almost like an aparition. Instead, the teacher in the purple shirt scooted her chair closer. She wanted to tell me all about her own background training in special education and how, in fact, she trains special education teachers at a nearby university. (It’s amazing to me how often I encounter teachers and administrators who want to tell me about their special ed background — and how not all but many of them have not only left special ed but seem to have no idea what it should entail. In fact, “My training is in special education” has become my biggest red flag.)

I kept my mouth shut and tried to smile. It’s going to be a long year. Friday was an important reminder that it’s not going to be easy.

Thank goodness Mrs. W. has been cast in the supporting role.


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Tags: Filed under: Down syndrome, Junior High by Amysilverman

4 Responses to “Down syndrome and Junior High: Here We Go”

  1. Great post. keep ‘em comming. I love hearing about turning the tone around in the meeting.

  2. I, too, am (no longer) religious. Regardless, after you posted the before-first-day-of-school morning photo, I thought good thoughts or something, analogous to religious prayer. Then you posted the great after-first-day photo. With this story of Ms. W et. al., we have answered prayer. Please pass my hug on to her, and Sophie.

  3. I enjoyed this. My daughter just finished middle school and is headed to High School. I frequently tell people if I were looking for the easy path, I would have gone along with their recommendations years ago because it would be easier. We had a fabulous middle school experience. There were some bumps. Sometimes the bumps seem like mountains but overall it went well. Thanks for sharing.

  4. As I say on almost all your posts, I know nothing about the particular struggle you are facing. But I do know quite a lot about counselors who assume you have no ability to meet the “criteria” for some special thing (fancy college? any college? life?) and flat out tell you so. My high school college counselor told me not to bother applying to the university I ended up attending. He told me that they couldn’t consider me, and he had a whole list of reasons. i was a disorganized mess and I only happened to apply to the school because there was a leftover application in the box in the office, but I applied out of SPITE for this wicked, small minded counselor. I have never understood how little imagination and open-mindedness most people have. I have never understood it, and that pre-dates having a child of my own. People are just narrow-minded and unpleasant. Except for the ones who are lovely and smart and much wiser, like your Mrs. W. And the ballet dancer. (Take it from me, trust the ballet dancer over the other one, the negative one.)
    XO from the other coast!

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