Comments on: Maybe Sophie Knows Best

By: Moe Loughran

Moe Loughran — Sun, 24 Jan 2016 01:12:05 +0000

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….

By: Amysilverman

Amysilverman — Sun, 27 Dec 2015 13:54:13 +0000

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

By: Amysilverman

Amysilverman — Sun, 27 Dec 2015 13:50:43 +0000

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

By: Cole

Cole — Mon, 21 Dec 2015 13:41:42 +0000

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.

By: Meg

Meg — Thu, 19 Nov 2015 21:54:04 +0000

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.

By: Liz

Liz — Fri, 13 Nov 2015 21:10:55 +0000

“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!

By: Christine

Christine — Fri, 13 Nov 2015 16:34:59 +0000

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.

By: teeps

teeps — Fri, 13 Nov 2015 12:55:25 +0000

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.

By: Jo Chopra McGowan

Jo Chopra McGowan — Fri, 13 Nov 2015 09:52:31 +0000

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.

By: Kathleen Frye

Kathleen Frye — Fri, 13 Nov 2015 03:36:22 +0000

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.