August 22, 2011

Independence Day

Homecoming...
Okay, so I'm breathing again after a somewhat anxious day.

Schuyler survived her first day of middle school.

She seems to have done more than survive, really. She apparently had a great day. She jumped off the bus in a great mood, and was telling me about what they did in her band class before we even got the door open. She said she had a little trouble with her locker and needed some help, but she'll get it. She's already opened it a few times all on her own, after all, and she doesn't like to lose. Her lunch bag still contained the food she was too excited to eat at lunch, including her chocolate pudding, people. Chocolate pudding. She left pretty much everything at school that she was supposed to bring home, except Pinkessa, but otherwise she seems to have nailed all the big stuff. When I asked her how she did, she said "I listened to my teachers very carefully." She is trying very hard to get this right.

We've had a lot of anxiety about Schuyler going to middle school. The truth is that she's eleven years old, but she presents much younger. Schuyler has a developmental delay, but that doesn't tell her whole story. It's hard enough to track her intellectual growth, but Schuyler is also emotionally... naive is perhaps the best word. She's very sensitive and wants to help, to the point that she often invades personal space. She tends to play with kids a few years younger than she is, which worked out well enough in elementary school, but in middle school, she's among the youngest.

But it's not that simple, either. Schuyler is also very adaptable. We saw it last week at the school's open house. Schuyler is extremely sensitive to the behavior of those around her, and when she found herself surrounded by kids older and more mature than herself, she stepped up and she worked to fit in. I believe that's probably what she did today, too. Middle school might kick her ass a little, but it may just finally provide the incentive to grow up a little, too. Not too much, I hope.

There's an undeniable truth about Schuyler. She is mostly uninterested in embracing a world of neurodiversity. She wants to be like everyone else, and while we try harder than anyone really knows to celebrate who she is on her own terms, Schuyler works hard to walk unimpeded in a neurotypical world. She understands that she's different -- she's said as much -- but she also knows that she can pass for typical. I've written about the unique challenges of invisible disabilities, but Schuyler wouldn't have it any other way. I don't know how much success she'll have, and I suppose on some level she may be doomed to fail, but if anyone can do it, if any kid with a developmental disability can make her way through our world, it may very well be Schuyler.

At the open house, I watched her find friends and make a few new ones. I watched her as she puzzled out her locker, and I saw how she mapped out her classrooms. She memorized all the numbers she needed, and she did so without one bit of help. When confronted with a world of kids who are older and more independent than herself, Schuyler stepped up. I think she might just continue to do so.

Those of you who have been reading me for a while, particularly those who have read my book, you understand exactly how much it means to Julie and myself that Schuyler might one day be able to live independently. Entirely independently, too, self-supporting and on her own terms. Middle school is going to be a big part of that for her. She's got accommodations in place to help her. She's got assistants in most of her classes, except for PE and band, and she's got her medic-alert tag and a luggage tag on the little backpack that she uses to carry Pinkessa, so she can quickly tell people what they need to know. She's getting help.

But at the end of the school day, she gets on a bus and comes home. She'll have a key to let herself in if she needs to. As far as anyone who's casually watching knows, Schuyler will be the thing she dreams of being the most. She'll be just another kid.


35 comments:

  1. I have followed your for years. I have watched the struggles. I have cheered. This post made me bawl like a baby. Here is to independence. Good luck!

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  2. Yeah! I'm so glad she had a good first day. Awesome outfit, by the way.

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  3. Yay--here's to many more good days in middle school! Count me another huge fan of the outfit....

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  4. Congrats Schuyler!
    Middle school is an interesting experience, without any additional difficulties. It's already hard to be in that in between land..not a kid anymore but not a grown up either. Middle school is the first real taste of that weird limbo land. So immensely happy for you all that the navigation of those often rough waters was so easy! :)

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  5. Yay for middle school! Though I have a question. I am a music/special ed teacher and don't understand when there are no assistants in music classes. Was this by design and if so why?

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  6. Oh how I understand about the independence thing...and hopefully the step up thing. Our kids are very similar in their age/development/youngness and I do hope that G's day tomorrow is a good!

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  7. Schuyler FtW today!!!

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  8. I cried a little bit after reading this. I've followed your blogs since before a diagnosis, and I'm just so excited for Schuyler. I've always been cheering for her, and today was no exception. You should be very proud of her. :)

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  9. Wonderful news!! Way to go, Schuyler! Oh, I am so happy for all 3 of you!! ;-) I am so glad you had a wonderful first day.

    Carrie T.

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  10. I am a music/special ed teacher and don't understand when there are no assistants in music classes. Was this by design and if so why?

    I think because it's a beginning percussion class rather than a full band situation, and because she's ambulatory and won't need to take a lot of notes or write things down, the idea is that the band director should be able to assist her without any real problem.

    I'm a little more concerned about PE, since they'll be dressing out. That might be challenging for her, although I'm sure she'll be okay.

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  11. Thanks for the explanation on the band setting. I (sadly) often am left to teach full classes plus children who have 1:1 or classroom aides except the para is scheduled to take a break/see other students during music time and really hoped this was not the case for Schuyler. Best wishes to Schuyler for a long percussion career and many earplugs for mom and dad!

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  12. I just finished reading your book and I am so thankful to have stumbled across it! I loved it and was totally captivated over the last week wanting to find out what would happen next! I laughed, i cried, and even got pissed off a few times, but all came out wonderfully in the end. I am a graduate from Eastern Michigan University in Special Education and thankful that you found an amazing school for her...not many of them around that is for sure! Congratulations to Schuyler on her first successful day of middle school, definitely a big step for everyone! I look forward to continuing to hear of her many accomplishments! She is a beautiful young lady!!

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  13. Way to go, Schuyler! I am very proud of you. I know you'll do great in middle school because you are determined to make it happen. You are a smart girl! Have fun in band! :)

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  14. I, too, have followed your blog for years and have to say that she sure looks like a "normal" kid -- that dress is perfect -- her haircut is hip and cool (even by LA standards!) and that face, that face, that face! She has none of the awkwardness of the adolescent in her eyes -- and it's just so damn hard not to ROOT for her. I will be doing so as she and you and Julie struggle through this transition. Thank you for sharing it with us, as always.

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  15. Well done Schulyer! My son is 10, and autistic. In 12 months he will be off to High School (in the UK High School is 11-16) - and I am terrified at the thought of it. This year is all about "transition". So happy to see that Schulyer had a good first day at her "big school".

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  16. Wow, I have read your book and followed your blog since our little Hope(6) got her PMG diagnosis. Middle school is a way off for her, but to here how well Schuyler has got on with her first day gives me such joy.
    Yay for Schuyler. - and yes I also love her outfit!

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  17. What pride it must bring her to step into Middle School and to begin to find herself doing things she has wanted to do. I was just thinking of the term in the special Ed community of the 'dignity of risk' - that we deserve to give all our kids that, we put everything in place then we say 'game on' like we do with all of our children, typical and not so typical. Rob and Julie, you have given her the dignity of risk and look at the gain.

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  18. Awesome first day! Congratulations to all of you! I agree, Middle School is tough for all kids. And, actually, some of what you're experiencing is standard for some NT kids - my girls are thoroughly average in every way and present much younger. They are a bit naive and very trusting and not very wise in the ways of the world. And mine are short. So, sending the youngest one to middle school when she's smaller than your average 4th grader was a little scary.
    Sounds like Schuyler, like always, will surprise you with her wonderful-ness. Here's to a GREAT year for all of you.

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  19. Anonymous8:29 AM

    I have been reading since the beginning... and this one gave me goosebumps and cry like a baby. You must be beyond proud of her.

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  20. Aw, man, Rob! I am sitting here with big fat, hot, happy tears streaming down my face. This transition is so huge, so crucial and Schuyler is taking it in stride. I suspect she's going to be more than ok in the long run. Way more than just ok.

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  21. The tag on her/Pinkessa's backpack...is that another med-alert tag or is it something else? Am wondering bc we are trying to figure out how to label things for our son to take to school, too. He's got a VL, courtesy of Schuyler's story! it has changed our lives. Opened up incredible possibilities.

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  22. I read through my twitter feed in reverse chronological order so yesterday I got the one about calming her down enough to get the full story BEFORE I got the one that said she was hopped up EXCITED not hopped up TRAUMATIZED. Dicey couple of minutes while I scrolled down to find the real answer. I'm so glad she's finding joy in the new experience. It may get hard but I can't help but envision her kicking ass and taking names in middle school. In the best possible way, of course.

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  23. "The tag on her/Pinkessa's backpack...is that another med-alert tag or is it something else?"

    The kids aren't allowed to carry backpacks from class to class, only to bring their stuff to and from school. This is a small backpack specifically for Pinkessa, however, and it's provided for in her IEP. The tag simply says that the backpack is for her speech device, as a quick way to let teachers in the hallways know that she's allowed to have it.

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  24. She's amazing!! I too love the outfit and the pinkessa backpack. So happy to hear she had a great day. I better get shopping for a pinkessa bag for my daughters speech device the ipad. I have a small black bag right now that's not going to cut it is it.

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  25. Sherry, we had a hard time finding a backpack that would fit her device, until she had her ambulatory EEG last winter. They let her keep the backpack that held the EEG device, and it just happens to fit Pinkessa perfectly. We kind of lucked out.

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  26. Yay! You go, Schuyler! I am happy for all of you.

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  27. That's interesting that they're not allowed to take their backpacks from class to class. At my daughter's middle school, they're not allowed to use lockers. Instead they have to carry EVERYTHING with them all day. All their books. ALL DAY. I think it's absurd. Especially considering there are lockers on every wall in the damn building.

    I'm glad Schuyler had a good first day. I hope the second day went just as well.

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  28. Anonymous8:50 PM

    Can I hug you? Through this blog? This is such a big deal... And I thought Kindergarten was hard. You guys have given Schuyler the space to grow (and I know it's easier to talk about it than actually let it happen). Hooray!!!

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  29. Rob, she looks SO happy, thrilled even! And I love her dress.
    I hope your worries and apprehensiveness have subsided somewhat... I think she will be fine, and has sprouted her little wings.

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  30. 11 is hard.... 6th grade is hard. i have an 11 yr old, 6th grader who is 'normal'.. but...he is going to a new school.. he is asian and adopted.. so..'normal'...well...depends on the standard of 'normal' i guess.. tomorrow is his first day of 6th grade... i am hoping for a good day.. or at least, not a bad day. 6th grade is hard..

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  31. Schuyler rocks. That is all. :)

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  32. (I might have submitted this already... or it got lost in the ether. Hope you don't get two copies)
    I've had a happy little smile on my face since I read this post. It occurs to me that the day was so special because it was so ordinary. A large-ish number of kids had trouble with their locker, were too excited to eat lunch and left stuff at school that was supposed to come home. And a variety of other little moments of trouble that Schuyler *didn't have*. Congrats on having a lovely, ordinary First-Day-of-Middle-School.

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  33. Okay Rob, I'm speaking to you as a parent who likes to fit in and whose kids like to fit in. I get the impression that (apart from any issues with Schulyer) that's not how you and Julie see yourselves. Maybe I'm wrong but I see you as someone to whom that's just not that important. I think that is a fine way to be. I think it's ok to think that it's a good way for your kid to be. But I know you also want more than anything to do what's important to Schuyler so I'm going to make a suggestion. However if I'm reading this wrong and Schuyler doesn't care that much about being viewed as fitting in, the ignore my asshat advice!

    I would make the same suggestion (I have) to friends with NT kids where the parent views themselves as an iconoclast and one kid in the family just isn't comfortable with it.
    So...even if it takes some effort it would be great if you or Julie could befriend another parent with a kid the same age who is one of the "pack." This isn't to try to get Schuyler to be friends with this kid. It's do get information from them. How are most of the kids doing things. Schuyler doesn't have to do these things. But it's good for her to know. Do most kids use a backpack or is that viewed as "babyish." In one local school, wearing a backpack would really set you apart (the kids use nylon bags) at another you'd fit right in. At some the girls wear jeans everyday at other it's a certain type of sweatpants. Shoes too. I can understand thinking that "following the crowd" is silly. But it's always good to know when you are and when you are not especially when naavigating middle school waters.

    I hope this does not offend in anyway!

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  34. That's not a bad suggestion. It's probably not going to be a priority for a while, though. When Schuyler is trying to "fit", it's in much more basic ways. But I'm sure it'll become an issue before too long.

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  35. Pat and I are very proud of you Schuyler!

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