I'm going to post this, and then I'm going to probably clam up about the situation until it resolves itself.
Short version: after Schuyler had a another bad day at her summer after-school program, we checked the data log on the Big Box of Words (which records all her key strokes with time and date stamps) to see if there was some clue as to what she was saying or doing at the time of her conflicts. And that was when we discovered that during her time at the program, she did not use the device ONCE. Not a single time. Monday, Tuesday and Wednesday, there is a five hour gap from when she left school to when we picked her up.
The assistant site director asked me today what her speech device looked like. This was two days after we looked him and the director both in the eyes and said that yes, she needed to use it as frequently as possible.
Things have gone so well with Schuyler for the past two years that suddenly having this situation blow up in our faces has an extra bitter taste.
Schuyler, the little girl girl with the world's most positive spirit and the taste for fresh adventures and new friends, told us tonight that she doesn't want to go back. I don't blame her.
This gets fixed tomorrow, one way or another.
36 comments:
Sending all the positivity I have...
She didn't use it ONCE? No wonder she was upset. You go kick some a**...
Oh Rob, I'm sorry. And fuming on Schuyler's behalf! Her bright spirit shouldn't have to face this kind of sheer stupidity - especially after you've already met with the director to explain the situation! Go kick some butt for your monster-slayer. I'd join in with you if I could.
Oh, poor little love. Thank goodness you have the log file. I bet they didn't know that. Good luck.
Just sending my support..... cant understand how the staff could allow that to occur.. no wonder she was so frustrated.
hang in there
That's not cool. I know you'll get it resolved---and good for you---but I also know the resolving bit is always a tough process. Loads of support.
I went from tears reading your last post (the "I love you" part) to such frustration and anger on Schuyler's behalf reading this one! Do they realize that denying her access to the device is equivalent to (or worse than) taping a kid's mouth shut with duct tape for the day?!?!
Rob, I really hope this gets resolved. If not, maybe there's a molecular transmitter you could use to send her to MA for those hours? This 2nd grade teacher would welcome Schuyler's company.
Please let her know that we're all pulling for her!
Wow.... poor kid. Sending good vibes.
Why didn't she use it? Does she initiate this on her own, or is it a situation where she needs to be told to use it? I have been reading for a while, and I guess I thought she (perhaps wrong of me)initiated the use of it on her own. . .
I agree that the staff should be encouraging it as frequently as possible, but I also think ( from what I have read) that Schuyler is quite capable of getting things done for herself..
I think there is some very typical, age appropriate "STUFF" going on here! :)
As far as the staffers go. . I'm sure you'll take care of that.
At this stafge, it is still important that she be encouraged to use it. If you think about it, it's a fairly unnatural way to communicate, and AAC users, especially young ones, can be made to feel awkward in using it fairly easily. Two summers ago, when she had her horrible summer school experience in Austin, she stopped using the device until she started her Box Class. This is apparently par for the course with AAC users.
At the age of seven, Schuyler and her classmates are extremely sensitive to the signals that they are sent, which is why the Box Class environment is so important. Obviously that doesn't fly during the summer, so that peer support becomes even more important.
Also, from a purely logistical perspective, to use it, she has to have access to it, and from what we were told yetserday, that hasn't been the case.
yikes, i wish i could say unbelieveable, i am so glad that Schuyler has you to help with her fights!
I am so glad that Schuyler has you as her advocate.
Oh my fricking hell, I would raise Cain.
I can't write her what originally came out of my mouth when I read this. That's just ridiculous. I hope things get straightened out today.
Un-frickin'-believable.
Good luck Rob (& Schuyler!). So sorry to hear that the world can be so annoying and idiotic.
Ugh. That's horrible! Some folks simply just don't seem to understand this is a child's VOICE! It would be unacceptable for a teacher to tape a child's mouth shut, but somehow they just don't see how removing the device from direct access amounts to the same thing. Hope you're able resolve this quickly and painlessly.
Are you starting to warm up to the steel-toed boots idea yet?!!
I would take some time off of work and go hang around that place to find out exactly what is going on. Good luck Rob.
That right there is some SERIOUS bullshit.
I hope you can make it right & better. I'm sure between you and Julie those em effers will get it sooner rather than later.
So in other words they reached down her neck and put her vocal cords in a locker? Neato??? :/
Unreal. Taking her box away (or not letting her have access to it) is akin to putting duct tape over her mouth. They would never DREAM of taping a kid's mouth shut, what makes them think taking the box away is any different?!? Kick their shins, Rob, or let Schuyler do it. She had the right reaction, I think.
Sending thoughts and prayers your way. I can't imagine why they'd deny her access to something so important. I don't know whether your desired outcome today is butt kicking, resolution with her continued attendance, a change to a different program altogether or some combination of the above. Whatever it is, I'm hoping today's conversation results in a solution. There are so many of us who care for this darling girl, I can't imagine why they'd deny her this. I just can't.
Yikes. I'm sorry.
I suggest you start the meeting with a roll of duct tape. Duct tape their mouths shut, then demand clear answers for their behaviour. oh, and don't let them have pens/paper.
It would be a very quick object lesson.
Well that certainly explains a lot. Kick some ass, Rob. Ridiculous, bordering on abuse, unacceptable - and perhaps illegal (hello, IEP!)
I am on the edge of my seat waiting to hear from you on this one.
Bastards.
Yeah, kick some ass. That's outrageous. It's like these assholes need you to stand there hovering over them just to get them to treat your kid right.
(On the other hand it's kind of cool that you have the ability to go back over your kid's day like that. Sucks that you ever have to, but that's an ability I wouldn't mind on those days when my verbal kid comes home miserable and can't or won't tell me why.)
It is cool, although it's something we do very infrequently since it really is a pretty serious invasion of her privacy. Granted, she's only seven, but still.
It will become an even bigger issue as she gets older, obviously.
Not being able to express her feelings for 3 days is totally disgusting. I really do feel for the 3 of you especially you and your wife when you looked at her log that must of been devestating.
Hope you can get to the truth of the matter.
when you looked at her log that must of been devestating.
I don't think either of us were completely surprised. We thought there would be SOMETHING, but we didn't expect there to be much.
Damn! If they didn't let her have access to her box, that is just... mind-blowingly horrible! I just don't get why that would be hard for someone to encourage a little girl to talk via the only means she has to talk! I hate that anyone would either deny her access completely or make her feel bad for using her device. Whatever series of events led to her not using her device, I hope they straighten things out immediately over there. Jeez.
~Meg in Los Angeles
My first thought was that Schuyler herself was choosing not to use the box-- because I couldn't imagine that anyone would take it away from her. Then I read comments and realized what I was missing.
Clearly I'm a naive idiot. Holy. Crap.
Rob, I hope Schuyler had a better day today. It stinks that they did not give her access to her big box. It stinks that they put her into the situation before training their staff and strategizing with you and Julie and Schuyler about how maybe to discuss differences or stories or something to make is safe and even cool for her to use her big box with everyone.
I hope you had some joy today in resolving and fixing things. I hope Schulyer had a better day. She is my hero.
Is there anything you can threaten them with legally? I cannot believe that they would so flagrantly disregard-and obviously discourage-her from using her voice! I would love, love LOVE to be a fly on the wall when you confront them with the evidence that the BBOW wasn't used for hours during her time there. Grrr-I'm in Pennsylvania, but I'm ready to come down to Texas right now and go to town on those idiots!
Poor kid.
Wow, the summer program sounds better and better every time you write about it.
Ew. I just got sarcasm all over my keyboard...I should clean that up.
I think the question to be resolved is: Why was she not using the device? Was it taken away from her? By teachers or peers? If it was taken away by teachers, I'd go to town on them. If it was taken away by peers, I'd go to town on their parents (and on the teachers). If she didn't use it out of her own motivation, something else is going on.
Gah. Sending you good vibes that this situation resolves itself soon.
OMGWTFBBQ?!? All I know about the big box of words, I've learned from your blog. But I am not any sort of professional educator or childcare worker, and if a child who used an assistive communication device were going to be in my care, one of the first things I would do the day she arrived was to make sure she had the box and could use it easily and that all the adults in the room knew what it was and that it was important. And then I'd want to sit her down and ask her a couple of questions so that I could get a sense for how box-based conversations worked. This seems like an utter no-brainer to me.
There's a line I've read regarding the Bush administration that seems to apply to some of the people who deal with Schuyler: Sufficiently advanced forms of incompetence are indistinguishable from malice.
You know Rob if they didn't allow her to have access to her big box of words that is like expecting a child who wears an artifical leg to run an obstacle course. Wrong, wrong wrong. I hope you kick some ass and take names. And for God's sakes don't clam up about it, speak loudly and often on behalf of your kid. We all support you.
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