The Future Happens Here and Now

Charlie at the supermarket (done up for Thanksgiving and Halloween) So I'm please to report that my meeting yesterday morning with Charlie's case manager went well and was productive. (After my heavy duty emotional display at the last meeting with the school district, no fireworks were strictly in order).

The case manager had typed up all the information about services, staff-to-student ratios, school calendar, behavioral support, etc. that we had heard on our visit to the
big autism center. She indicated that, depending on Charlie's needs, changes might be made. For instance, classes at the center have a maximum of six students with a teacher and two aides; the staff-to-student ratio can be 2:1 or 3:1. In the self-contained autism classroom that Charlie is currently in, there's one teacher and four aides, and four students–indeed, Charlie's classes have all had a 1:1 staff-to-student ratio since he started school in New Jersey when he was 4 years old, and I've really no idea about how this change might affect him.

While there were definitely plans about the administrative end of Charlie changing schools, there didn't seem to be anything specific involving Charlie himself. I asked about him visiting and the case manager thought that would be good. I mentioned that it's really important to find out the names of Charlie's new teacher and the aides and students. We also talked about taking photos of the teacher and aides and therapists, of the classroom, of the cafeteria, the different parts of the building. (While typing this, it just occurred to me that I should probably try to go to the school on my own and take all the photos myself with my trusty iPhone camera and then get a little crafty with iPhoto, and finally replenish the color cartridge on the printer.) (Or maybe I'll just send away for photo prints…..)

It was good to talk about plans for Charlie's new and future placement and it seems that he will be there in a matter of weeks. We continue to receive Incident Reports that mention restraints and holds and that arrive some two weeks after the fact(at least; one report that we just got this weekend was dated September 23rd). Of course it's hoped that Charlie will do better at a new school but he's not there yet, and (to judge by a particularly long paragraph in one report), he's having exactly the same difficulties, and the staff is responding in exactly the same way, as they have for months. At the September 25th meeting, Jim made a heartfelt statement about how restraints affect Charlie for days after; how awful, bad, confused, hurt, Charlie feels afterwards (no, he doesn't tell us that in words but there are some things Charlie's dad just knows). But ever since it was clear Charlie is definitely going somewhere else, little (nothing) has been done to remedy the day-to-day situation in the classroom. 

And rather than just say, "Charlie will be outta there soon, we'll just count down the days," we as his parents need to make things better for him now, where he is now. It's important to plan ahead for Charlie's new placement, but we cannot have him suffering one instant more. I mentioned all this to Charlie's case manager and asked if she could think of some way to have some sort of meeting about Charlie's IEP, as so much has changed since that document was
put together last May. Having made this request at least six times and gotten one no after another, I'm not too hopeful of getting a meeting, but Charlie's case manager talked about the possibility of adding an amendment to his IEP. There are some things that Jim and I wish to include in our parental statement and we'd rather change them prior to Charlie being placed out of district. We shall see.

As Charlie has gotten older, we've again and again heard that we need to "think about where we want him to be in 10 years," about the future, about his adulthood, about the next step and the next and the next. Believe me, Jim and I think of these things constantly. But being Charlie's parents, we also think a great deal—think most of all—about the boy in front of us, the
boy who is Charlie today, not yet 12 1/2 years old, still very young, and sweet, and always looking baffled and worried when he realizes he does something that he shouldn't.

As I walked out of the school, I saw a speech therapist who did her teaching practicum in Charlie's classroom years ago, did speech therapy with him after that, worked with him in our house. I had known that she works in our school district but had yet to run into her and was just really happy finally to see her. She wanted to hear all about Charlie and said she'd try to visit him while he is still at the town's middle school, on her lunchbreak. I mentioned the helmet, and that he does not wear it at home. "Oh, I believe you, of course he doesn't," she said, and added that she really hoped to see him and give him a hug. I told her, I thought Charlie would welcome this.

Actually, I'm quite sure he will.

8 Responses to “The Future Happens Here and Now”
  1. feebee says:

    I don’t think I’ve ever told you that you (and Charlie, to be sure) are why I am committed to not using restraints with Bede unless there is absolutely no other resort. It makes things take longer but it’s so much better.

  2. Nicole says:

    I’m wondering if the lower staff to student ratio will give Charlie a chance to be more independent? I would imagine with such a high staff to student ratio they are pretty much monitoring his every move, which could, possibly, be actually causing them to intervene sooner than necessary rather than giving him the chance, and space, to self-regulate. Sometimes I really wonder, if in clinical settings, staff can over analyze and excessively confront behavior. Turning typical behavior into pathology.
    Anyway you could get an idea of his classrooms schedule to make a picture schedule before hand? Might be helpful 🙂 . Good luck!

  3. autismvox says:

    Oh, definitely won’t take photos of the students! But of the classroom and the teacher and staff if it’s ok with them—making a picture schedule in advance is a great idea, I’ll ask about that to.
    Jim and I have been thinking that a lower staff to student ratio might be more helpful. We give him a fair amount of “space” at home whereas, at school, I’ve never seen him without two staff trailing him. (Usually the two guys; both are shorter than Charlie.) I’ve been suspecting that Charlie is getting over-scrutinized and redirected for the slightest things—-his BIP specifies that “stomping” is a behavior that’s not “appropriate.” He has been stomping at home but I think it’s a way of calming himself; a sort of substitute, even, for things like head-banging. I’d far rather have some noisy stomping and jumping than the madness of restraints.

  4. Marla says:

    Wow. Lots going on with Charlie. I hope things move along quickly. I have not even had the energy to discuss on my blog the challenges with trying to get M services.
    Charlie is getting so big. Just like M! Just blows my mind.

  5. Kate says:

    Good grief! If I had two people following me around all day, I would be jumping out of my skin (at the very least).
    I know my guy is extremely sensitive in feeling pressure to perform and either shuts down completely or goes off the rails. It’s a delicate balance of expectation and support (which you and Jim understand but the district seems to disregard in order to follow the letter of a piece of paper(s) that are in the best interests of the district and not the student).
    Nicole put it very well “turning typical behavior into pathology.” Indeed.
    I am hoping that the transitions are as stress free as possible for Charlie (and you guys) and that this center fits Charlie and not the other way around (which your current district seems to expect).
    ps Stomping isn’t appropriate? Really????? That, right there, would give me a huge pause as to how much they really understand about autism – actually how much they understand about communication, sensory issues, self regulation and, above all, a strong, healthy tweenage boy who perhaps needs stomping as an outlet for all that is going on right now.

  6. AnneC says:

    kristina wrote: “Jim and I have been thinking that a lower staff to student ratio might be more helpful. We give him a fair amount of “space” at home whereas, at school, I’ve never seen him without two staff trailing him.”
    I was actually thinking this on reading your post — one of the biggest things I think a lot of disabled people deal with is being “hovered over” out of fear that something terrible will happen if we aren’t scrutinized every second. From first-hand experience I can say for sure that the scrutiny itself can be very exhausting to deal with. That kind of thing tends to keep me in a very hyper-vigilant state, and also a state where I just can’t DO a lot of the things I can do with less scrutiny. So it ends up looking like I am a lot more agitated than I really am, and have fewer skills than I really do.
    I would guess 10-1 that something like this could be happening with Charlie — you and Jim know he can do all kinds of things and that he isn’t constantly upset, but school personnel used to following certain dogmas about “how to deal with THOSE students” are unable to see that because they can’t conceive of being “part of the problem” themselves.

  7. autismvox says:

    I have to confess, I’ve been a main force pushing for 1:1 with Charlie. As currently practiced by the school, it seems to be more about watching out for potential trouble that may not happen. But (with the exception of Jim and Charlie) if I had anyone standing that close to me all the time….no thanks.

  8. Jill says:

    I hope the new school will be a better place for him.
    What should his teachers do besides restraining him when he loses it? I understand that heading off a wild scene by redirection is the best method but sometimes a rage just can’t be stopped. What then? His teachers can’t let him injure them or hurt himself.
    From what you reported that Charlie said when he was repeating their words at home after he had been put in a hold the teachers weren’t taunting or chastising him; they were trying to make him stop banging his head or whatever. I doubt his teachers are acting out of cruelty when they put him in a hold; they’re trying to stop a destructive or injurious behavior.
    So, what should they do? How to you handle rages when they happen at home? Clearly, offering him a treat to distract him will only produce more so-called behaviors. You mentioned stomping. One kid stomping isn’t bad but kids pick behaviors up from their peers and before you know it there’s a class full of angry stomping kids.
    I don’t have an autistic child; I’m just a reader who wonders about these things.

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