Maybe Sophie Knows Best
posted Thursday November 12th, 2015
Today’s one of those days where I wouldn’t mind having a good cry.
Not a burst-int0-tears-at-the-drop-of-a-hat cry, but the kind you schedule, like Holly Hunter’s character in Broadcast News — where she sits on the bed in the hotel room, unplugs the phone, takes a deep breath and lets it rip.
It started this morning when I stumbled on the fact that not only do the gifted kids at Sophie’s school get to take drama, they also have a journalism elective.
I guess that makes sense, I chuckled to myself. Given the state of my chosen profession it will take only the best and brightest to get us out of this mess.
No journalism for Sophie, or the rest of what I call the “general population,” the kids who didn’t test into the gifted school-inside-a-school. All the kids on campus — gifted or not — can take choir, band, visual art, home economics, computers, Spanish and P.E. But other electives, like drama, sustainability and journalism, are “project based” and reserved for the gifted kids who passed a special test.
Sophie really wants to take drama. And, now that it’s come up, journalism.
“I’m going to talk to the [principal of the gifted school] about it again today,” she told me in the car this morning.
“Oh no, please don’t. You’ve already –” I began. Then I stopped. “You know what, Sophie?” I said. “Say whatever you want.”
Maybe Sophie knows best. I’m beyond knowing what to do. Last week, she made the junior varsity cheer squad. I found myself wondering whether she would have been chosen if there’d been a way to mask the fact that she had Down syndrome from the decision-makers — if her loud voice, memorized cheers, coordination, ballet-inspired grace, high kicks and ability to do the splits would have gotten her in. Her merits, with no qualifications. I’ll never know. The skids were greased. And not in a bad way, necessarily, certainly with the best intentions. But they were greased.
Now the question is, where else to get slick? And that is what has me wanting to cry, because I don’t know the answer. Am I pushing too hard, or not hard enough? What is Sophie capable of? What does she need? When do all the requests for equality get obnoxious? Where is the fucking instruction manual?
After weeks of pleasant conversations at the district level, I’ve made no progress beyond the promise that maybe someone will sponsor a drama club again this year for all the kids at Sophie’s school. It doesn’t appear that anyone’s willing to budge on the question of fairness — explaining why the gifted kids get more options than the non-gifted ones. If a gifted kid can take Home Ec, why can’t Sophie take Drama?
And so I’ll take it up the ladder, hoping the conversations will stay pleasant, but knowing that’s not likely if I have a hope of achieving anything. (And by achieving anything I’m not referring to just Sophie — this is unfair to the hundreds of typical kids who also attend that school and have limited options for electives.)
It doesn’t end there.
Sophie’s been asking for a while why other kids at her school are going on an out-of-town trip to tour colleges. I mentioned it to a couple of staff at the school, who decided Sophie should apply to the program, which is designed for college-bound kids. (Which is sort of depressing — why aren’t all, or at least most kids considered college-bound in middle school?) So now I have another form to fill out. I don’t mind the paperwork, but I’m worried about the implications.
Every week, it seems, a new college program for people with developmental disabilities pops up. So yes, Sophie will be able to “attend college” in some form. But will it look anything like that out-of-town college tour? Hard to say. Am I just setting her up, showing her what will never be hers?
It reminds me of the conversation I had with her ballet teacher (who happens to be my mom) when I pressed on the issue of whether Sophie would ever be able to dance on pointe. My mom emailed back with a detailed explanation of the physical reasons it would be dangerous, and concluded, “Sure you could put her in a pointe shoe with lots of gel and stand her at the barre but it would be wrong in every way, especially that it would give Sophie hope that’s not realistic.”
For me, that ended the pointe shoe chapter decisively. I still look at pictures of friends’ daughters getting fitted for their pointe shoes with a little sadness, but both Sophie and I have moved on. (At least, she hasn’t mentioned it lately.)
But drama class, journalism class, the dream of attending an awesome college — those are not physical like pointe shoes, they are tougher pages. I’ll need Sophie’s help to turn them.
As I was sitting down to write, a friend posted this on Facebook:
“If disability awareness does not lead to inclusion and full integration and parity, then it is little more than tokenism.”
She’s right. Some days I think that if I see one more television news story about a young person with Down syndrome being elected homecoming king or queen, I’ll scream. I like the fact that people with Down syndrome are modeling, bring awareness and diversity to the runway, but I can’t help but think, “Really? That’s the best we can do?” And I’ll always be conflicted when it comes to cheerleading, no matter how much Sophie loves it.
But none of this is as simple as a status update. Putting Sophie on the cheer squad isn’t enough, I know that. So just what is enough? What does integration and full inclusion and parity look like? Where do we compromise and where do we refuse to stand down?
I don’t fucking know, and that’s the part that has me frustrated.
But I put on mascara this morning. So I’ll have to schedule that cry for another day.
“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.
I guess there is never any absolutely true, 100% right decisions when the future is an educated guess at best.
Try this out from the I Ching;
1. Childhood is a nightmare.
2. But is so very hard to be an on-your-own, take-take-care-of-yourself-cause-there-is-no-one-else-to-do-it-for you grown-up.
3. Love is not alone, but it sure helps.
4. How strange, that so often, it all seems worth it.
It does seem frustrating, especially about drama. I took a drama class in high school and Loved it. Sophie definitely should get the same opportunity. The drama class should be open to all, not just the gifted students. It seems discriminatory that they don’t have a drama class for people in the non-gifted population. Hope she gets to do it!!!!
“Am I pushing too hard, or not hard enough? What is [my child] capable of? What does s/he need? When do all the requests for equality get obnoxious? Where is the fucking instruction manual?
Oh so perfectly put. How did you get in my head?
thank you stef! xo
thank you. xo
Why the hell would only the gifted kids be afforded project-based learning? This is maddening. No wonder your heart is hurting.
Wow!
And I just worry about my sisters prescriptions being covered, whether her adult diapers will be prescribed/ordered/delivered, is she getting Alzheimer’s or just getting depressed.
Barbara is 57 now. School was over for her years ago.
As Kathleen’s comment makes so brilliantly clear, we’ve come a long, long way in the past 50 years. It’s hard for Sophie to be part of the vanguard of the new world, and harder still for you to have to watch it happening, Amy – but Lord, how much we all owe to you and her and those who went before you both – creating better lives for future generations of children with Downs, CP, Autism and so much else.
I live in India where it often feels like the America of Barbara’s childhood, but things are changing here too. Keep on keeping on. Much love to you and Sophie.
Great question, KimAZ. This IS segregation — all three examples. Where’s Mizzou’s football team now?! But the college field trip? I don’t get it. I teach HS and we don’t even take kids on college trips until the senior year (sometimes enthusiastic juniors ask and are allowed). Our focus isn’t really on any one “type” of kid — but we are definitely taking a lot of first-gen college kids on those trips, kids whose parents and situations might not otherwise allow/promote/afford a college visit (there is no “application” — just a permission slip). To me it’s not a matter of “what will college hold” as “what is the value — to 12 year old kids — of this field trip?” I know this school has been wonderful in so many ways for Sophie, but its priorities (like a lot of schools priorities) are all out of whack.
You are doing so much for Sophie and future generations. Perhaps there is an organization in the Valley that can provide drama classes for Sophie. My daughter was enrolled in activities outside of school because of the limited curriculum at her small private school.
Keep doing what you’re doing for Sophie and the many other children. You are an inspiration to all.
I’m glad I wore mascara today too.
“Where is the fucking instruction manual?” My heart aches with this right now. My daughter just turned 2 and I feel like I live this out every day. Thanks for putting it into words!
You and Sophie are both inspirations. In what is perhaps an inane response, I have to tell you that cheerleading was a great life experience for me. I learned to be comfortable on “stage”, learned how to handle attention gracefully (I hope), and learned how to work well with other competitive, athletic women toward a common goal. Interestingly enough, I remember way more about cheerleading camps filled with hundreds of girls and competitions than I do about cheering for games. I would love to see pictures of Sophie in her cheer uniform! And for what it’s worth I still love sports, including cheer.
So my latest version of this is realizing that the “mentors” we’ve had- the families who have fought for inclusion for their kiddos- and in theory won- and although it was hard work- their children do sit in a regular classroom and have since gradeschool- but at the junior high level- the work is hard and abstract- so they get their work modified- which means, wait for it….no diploma. No actual high school diploma. Because in our state work can’t be modified and you still get a diploma. I don’t know how I didn’t know this before now. And I know any actual education is better than no education. But still- I somehow thought they were taking basic level courses and while maybe they weren’t ap level- I thought they were still working towards a traditional diploma. I didn’t get that once you modify the work- then it doesn’t qualify as work towards that end. That made me realize that while our school has been accommodating once we got over the initial hurdle. That when we hit third grade will probably be the first time they press us to move her out of the general class and in to self-contained because that’s when the official standardized testing starts and even though NCLB ended- my understanding is that the replacement policy did not end that kind of testing. So there’s that- she won’t score well and once it matters to the schools income- I doubt they’ll be so inclusion-minded.
Nicole – Well, yes, in a lot of ways. I know it differs state to state and often even district to district (on smaller policies) but yeah, inclusion is harder as the kid gets older and from my experience (albeit very limited) it’s hard to tell exactly why at some points. Is it truly because the kid is falling so far behind? Is it because it’s impossible to modify the work — or if not impossible, then much more expensive? Is it because, as in our case, at 3rd grade it was time for an aide? Is it because of the standardized tests? In Arizona, at least, a child with special needs can take a version of the standardized tests that does NOT get counted along with the school’s overall scores. But we were discouraged from doing that, by behind the scenes advocates who felt it was better for Sophie to be pushed harder than that. Every kid is different, I learn that more and more, but I do believe in that philosophy — of course you don’t want to push TOO hard. And as for the diploma issue, I will admit that I have not gone there, I haven’t asked. It’s a good question. I guess in the end one has to ask how much it matters. It will piss me off, too, if it’s the case, but beyond the initial pissed off-ness, the question is, will it stop A and S from doing what they want to do in life? Will it keep them out of the college certificate programs for people with developmental disabilities that are so trendy right now? I hope that’s not just a trend, but who knows. Bottom line: A lot about our kids hits the schools in the wallet. But if you find the right school — not an easy task, but we did, and that’s in backward Arizona — and push hard, people will do the right thing. I’ve had to work really hard to focus on this on an individual level because as soon as I look at the policies I get pissed, whether it’s because they are crappy or because they are good but not enforced. Hope that makes sense, I’m pre-coffee and I apologize for the delay in responding, my poor blog is the victim of neglect! xo
Jo — I think about your note from the summer often, and need to clear the decks to read your blog, which I will, just know I am thinking about you and so looking forward to learning about how people with Down syndrome are approached in India…. Etc. xo Amy
I just wasted to let you know that my lead in my version of “the grinch that stoke Christmas”, my Cindy-Lou-Who had downs. She was brilliant. She hit only had a lead but a solo. She is high functioning as sounds your daughter (I just listened to American Life) and there is no reason why she could not participate. Emma also does glee with me. I am a vocal coach but started an after school program because my middle schooler wanted to have a signing program or a drama program. Because we didn’t have it at our school, I started it. Maybe someone can start it at your school as well? That part is perfect for a child with a disability. It’s a lead and coveted by all. It is also easily intergrable with all children. I knew she could do it and she did–like she knocked us all out of our socks!! Keep going — don’t quit….