We had our monthly AAC Parents Meeting last night at Schuyler's school. It's always an interesting and humbling experience, spending time with other box class parents. It serves as a reminder that most of them (well, all of them, actually, if I'm not mistaken) have tenacious and smart kids who, in their own individual ways, are nevertheless either slightly or significantly worse off than our daughter. Schuyler is the luckiest of unlucky kids.
Before the meeting began, the two members of Schuyler's Assistive Technology team who have been working with her from the beginning pulled us aside and said they think Schuyler is ready to move up to the next level on her device. "She's reached the point where she needs more words," they said.
Her device is currently set to display 45 keys at a time. (I forget how many it showed when she first started using it, but she was moved up to 45 shortly after she started school in Plano.) This new setting will bring it up to 84 keys, which is the Big Box of Words' maximum setting. Schuyler will be using the same setting as adults who use the same device.
Well, I can't begin to tell you how happy we are, happy and proud and most of all vindicated. Last month, I was writing in the book about her frustrating days in her little Austin-area school two years ago, so the whole experience is still newly fresh in my mind. That old school district insisted Schuyler would be unlikely to be capable of using this advanced device. Although they obviously never said so, we always suspected the reason they kept lowballing her had as much to do with budget constraints as anything else.
Rather than admit that or deal with the funding issue head-on, they claimed Schuyler was incapable of using the BBoW at all. ("Not educationally necessary" was the phrase I remember most vividly.) Not even two years later, she's moving up to the most advanced setting. It's worth saying again, and if you're a parent out there with misgivings about what your kid's teachers are telling you, I hope you're listening.
They were wrong, and we were right.
And if we'd stopped fighting that fight, Schuyler would be sitting in a cramped little special ed class in Bugfuck, Texas, trying to teach sign language to her teachers who didn't know it and using little pictures on laminated cards to express the most remedial concepts. She wouldn't be educated so much as taken care of, and when she reached the age of seventeen, she would leave them, not as a high school graduate but rather as Not Their Problem.
Instead, she's in first grade with the other seven year-olds, doing the same work and taking the same tests and obsessing over the same Hello Kitty merchandise as all the other seven year-olds.
Her AT team set up the BBoW so that a button in the upper left hand corner would allow her to easily transition back and forth between the 45 count and 84 count setups. It's an all new language, the 84, and it's going to take some time for her to learn it. But Schuyler being who she is, spent the evening on the 84 side, exploring and trying stuff out, only grudgingly going back to 45 when she needed to say something. She's fascinated by the advanced mode. She's going to do what she did with the 45 and with the device itself when she first got her hands on it. She's going to figure it out and make it hers.
Underestimating Schuyler will bite you on the ass, every single time. She doesn't like being told what to do, and she doesn't like being treated like she's less. It's becoming clear that she might just be the smartest one of us all.
That is awsome! I always go with my gut. A favorite saying of mine is ... "those of you who say it can't be done are getting in the way of those of us who are already doing it."
ReplyDeleteRock on! :)
Yeah! Congratulations! That is awesome, and not at all surprising. Go, Schuyler!
ReplyDeleteWow! Wow! and Wow! That is awesome. Way to go Schuyler! I hope you realize how much that encourages the rest of us with younger kids who have CBPS to keep pushing and advocating for high expectations for our kids. They can do it!
ReplyDeleteWhen you get a chance, Rob,please email me and tell me how things are going in her 1st grade class with language arts, because that seems to be the thing Ryan's current teachers are most concerned with (as far as having him in a typical Kind. class next year)
I sure wish we had a BBOW parent group here. That is great!
Kuddos to you (for advocating) and to Schuyler for proving them wrong.
Best,
Krista
That is wonderful! She has made so much progress since I first started reading your blog!
ReplyDeleteI did wonder, and maybe you've addressed it before, but does Schuyler know any sign language, and have you thought about her learning it in addition to what she's doing with her BBoW?
Our son is slow orally (about 6 mos behind other toddlers in all oral areas) and has really picked up a ton of sign language which helps immensely with his frustrations.
Schuyler was learning sign language when she started using the device almost two years ago, but since then, we've concentrated on the AAC training rather than signs, for the simple reason that the device opens up the whole world to her, not just the signing community. She still knows a great deal of sign language, however, and uses the basics every day.
ReplyDeleteBrilliant news! Nice work, Schuyler - the sky's the limit, now. I really hope that someone from her old school sees all this, one day, and learns something from it.
ReplyDeleteYou go, girl! Don't let The Man push you down.
ReplyDeleteAmy :)
Outstanding! As much as Plano sucks, it is clearly the RIGHT place for Schuyler right now.
ReplyDeleteYeah to all of you!
Christ dude, that post pumped me up as much as a Raiders or a Kings win. (yes, I am shallow.....but I care)
ReplyDeleteGO SCHUYLER!!!!!!!!!!!
Mark G
Absolutely awesome and not at all shocking. She is marvelous and so are her wonderful advocates - her parents.
ReplyDeleteI had tears in my eyes as I read this. Go Schuyler! Prove the world wrong! As a former teacher who had a fascination with AT for my students, but was always told by the district that there was no money for it, I love hearing that sometimes the little guy wins. Your determined little girl will know her 84 in no time!
ReplyDeleteI hope you plan to send an autographed copy of your book to the damn school in Plano.
ReplyDelete"Underestimating Schuyler{'s Mom and Dad) will bite you on the ass" everytime.
ReplyDeleteSmiling big here for you guys!
ReplyDeleteWoo-hoo!
Screw limits. No limits on our kids.
I was born and raised in Austin and will defend it to someone who wasn't to the death. But, damn, sometimes for such a big, progressive, "outside the box" city we can be small minded and just plain sucky sometimes!
ReplyDeleteWell, to be fair, it wasn't the Austin schools that let her down, but another local school district very nearby. Austin apparently wasn't much better for kids like Schuyler, but we never actually had any direct experience with them.
ReplyDeleteGod bless you all, Robert. Be sure and let the "old school" know how well she is doing. A letter to the Admin (ivory tower peeps) as well as the school, special ed coordinator and the teacher who had Schuyler as a student. Raise some H*** all over.... become an advocate for the "special child" everywhere!
ReplyDeleteDonna said...
ReplyDeleteActually, what you should do is call the school board and ask when the next school board/pta meeting is, and go to it, ask if you can speak, and then tell them what you've said here. Let everyone else know what happened, write an editorial to their paper, etc etc, and get the word out that this is what can happen to your child if you don't buck the system.
If the town was big enough to have a book store, I could have a signing there.
ReplyDeleteI'm just.not.surprised. Not surprised that she continues to exceed others' expectations of her capabilities. I had a tear in my eye, reading this post, but I am just.not.surprised. This girl is bigger than her box of words, and bigger than her monster.
ReplyDeleteHurrah for proving the doubters wrong!
I'm not surprised either. Schuyler is brilliant, in my really-not-humble-at-all opinion. She's a beautiful girl that's tougher than most adults. It wouldn't surprise me if she grew up to change the world.
ReplyDeleteROCK ON - all of you Rum-Huds!!! :)
ReplyDeleteJust got myself organised to add this:
ReplyDeleteThere is one level higher than the 84, but not on a Vanguard. Pathfinders can have up to 128 locations (the same Unity programming as the Vanguard but with static icons; successful Pathfinder users know where their every-day language is to the extent that they don't have any need or use for dynamic icons to find it) as well as a ?12-location dynamic touchscreen. Might be something for Schuyler to consider when she's a bit nearer adulthood.
I hope the new level has a key for Hello Kitty. :)
ReplyDeleteBut seriously, fab.u.lous, and yay hurrah y'all.
I'll have to actually take a look at a Pathfinder. It looks sort of daunting. I don't think I understand the static icon keyboard.
ReplyDeleteI just want to say that this is a great photo of Schuyler. She is a beautiful young girl who it's very obvious will grow up to be a beautiful young lady; inside and out.
ReplyDeleteShe has such strength and this is only what we know of her from you, here. If what we see here blows us away, you and Julie are very lucky to have her in your life.
Jenn
congratulations, Schuyler!
ReplyDeleteThat school system rocks from a tech standpoint (my husband used to do IT there). I'm so glad you were able to move so she could attend this school!
You and Julie deserve huge pats on the back for all you've done to help Schuyler, too.
Parents are ALWAYS a childs best advocate.. who else knows your daughter better than you? School systems basically suck - just some more or less than others.. I found that the TEACHER can make a BIG difference as well - a GREAT teacher is such a blessing .. We are witnessing that w/my son this year. My daughter however has had the same teachers 4 ALL highschool years - which is actually a BAD thing despite how good they are... Kids w/disabilities NEED change ! It teaches them to adapt for future... THUMBS UP SCHUYLER !! ;)
ReplyDeleteRob - at the moment, when Schuyler goes to say 'red' for example, she'll navigate through to a colours page and select it. On the Pathfinder, you effectively still go to that page, but there is no change of image. You'd select the colours icon - a paint can - and then the scary tomato-on-the-telephone, to indicate red. There's a much, much better explanation of it all, here: Minspeak FAQ. The sequencing will be similar or the same to what Schuyler already uses, hopefully, in terms of the picture cues.
ReplyDeleteHope that helps!
My childhood best friend, who was using Boxes long before a dynamic touchscreen was possible, was raised on Minspeak alone. She moved up through the Alpha and Delta talkers, onto the Liberator and now the Pathfinder. It's incredibly powerful - the most powerful AAC device around at the moment - and people with relatively good arm/hand function are faster, once competent, on the Pathfinder than on anything else due to the low hits/word - 1 or 2 for all core vocabulary.
Schuyler! I am so proud of you. You have reached your max on the BBoW! I am so thrilled for you and I am thinking of you today.
ReplyDeleteRob and Julie,
we celebrate Schuyler's victory with you!
Shannon :):)
PS: Uh, some goofball from her school district will see this one day. I hope they read it and it changes their views!
Can't think of a better way to start Monday morning! Schuyler continues to shatter the ceiling and prove that she can beat Everest. An amazing girl you have there, Rob--and the best part is, you know it. You are an extraordinary parent to recognize that gift you have in your daughter.
ReplyDeleteSo awesome for you guys! I had tears in my eyes reading it. Crazy how we can all care so much for this little girl without ever meeting her. Thank you for sharing!
ReplyDeleteRob,
ReplyDeletePerhaps this entry is the close of your book? How wonderful...
Trish
From what you've been telling us over the years, it's no surprise at all that Schuyler's reached this point so early. She is such a kick-ass girl, and she has the most amazing parents to help her with showing the world just how things should be done.
ReplyDelete"Underestimating Schuyler will bite you on the ass every time".... that was funny!
ReplyDeleteKinda reminds me of "never underestimate a woman with a Harvard degree and french nails"
Good for her, I'm really proud of her.
Go Schuyler! Rob, this doesn't come as any surprise to readers, since we get to see her through your eyes. It's extremely gratifying to me as one of the many donors to the BBOW -- we were all convinced that Schuyler could and would kick ass. *sniffle* *grin*
ReplyDelete