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.

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Comments
12 Responses to “The Future Happens Here and Now”
  1. emma says:

    Maybe there isn’t much communication between the two schools as they are different districts? It’s definitely worth phoning the new center, they may actually be quite willing to provide photos names of new teachers and photos of the buildings, or to let you go round and do the photos.
    Ideally this change of address would be a good opportunity to eliminate/reduce restraints, which seem to be habitual where he is now. Although Charlie may find the change stressful, hopefully he won’t be associating the new building and staff with the use of restraints, which may help reduce some anxiety.
    It’s really nice his old therapist wants to hear how Charlie is doing! Once, I took Dimitri to visit an old therapy place, he checked all the rooms (with a frown on his face) but was kind of suspicious of his old therapist and didn’t want a hug (she was so happy to see him too, it was kind of sad), I think he found it confusing.

  2. Dwight F says:

    Onward you go.
    >> (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
    Just a note, they might be a little jumpy about you snapping pictures of students. I don’t know how privacy laws work in NJ but I’d be surprised if the school wasn’t legally abliged to not allow that without parental concent.

  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).
    Kate
    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.

  9. autismvox says:

    Of course they are not acting out of cruelty! But sometimes good intentions turn otherwise along the way. We have outlined and explained to Charlie’s teachers how to note signs of him getting upset, how to defuse these, but they have not indicated any interest in listening to us.
    Here’s how I handled one such instance; I was standing quite far away from Charlie.
    http://autism.typepad.com/autism/2009/10/contentious-topics.html

  10. Nicole says:

    C just transitioned to bed. Big, ugly transition most days. He started crying- if I would have walked up to him and gotten into his space I can almost guarantee that he would have kicked me. Because I’ve done it before.
    I’ve learned, though, that if I give him some space and then ask him if he wants a hug 99% of the time he’ll get a hug and then go to bed on his own. Recognizing patterns like this is very important when dealing with kids on the spectrum- if you don’t change how you respond you’ll just keep getting kicked.

  11. Jennifer says:

    @Jill — I have been teaching now for seven years (well, just began my 7th) and in all that time, I have used the basket hold (which is one restraint that Kristina has described being used on Charlie) exactly once — when a child suddenly, unexpectedly, had a tremendous “neurological storm” (I like that term!), bit another child, tried to bite a staff member, and then bit himself until he bled in several places. Although he had a history of aggressive and self-injurious behavior, this was orders of magnitude above and beyond what we’d ever seen from him before…if we had seen him through a scale of 1 to 10, this must have been a 15 or a 20.
    I have had other students with aggressive and/or self-injurious behavior, and while I have stood in front of and blocked them from leaving the area where they are, the incident above is the only time I employed such restraints, and to this day (five years later) I still wonder if I could have seen it coming, so that I could have taken him on a walk, given him some sensory input, or have done something else, to have prevented it before it got to that point.
    At least in my district (and by myself personally), restraints are to be used as an absolute 100% last resort. I would have rather have given up my lunch to take him on a walk (it had been raining for several days and this may have been a factor) than have that happen.
    (In the interests of full disclosure, I have had my hair pulled a few times, been bitten once, and have had several shirts…err…stretched…for me. However, I would rather err on the side of benefiting my students.)
    Certainly, there *are* crisis situations, but it should in no way be an “everyday” kind of thing, which it sounds as though Charlie’s current situation has become.
    I, too, have begun to wonder if Charlie just isn’t given any wiggle room whatsoever. I am hard-pressed to think of any student without disabilities that is expected to “perform” at all times — and perfectly, at that. What student hasn’t rolled their eyes at their teacher, heaved a heavy sigh, or “forgotten” to do an assignment?
    As regards the stomping — that was actually suggested by a behavior consultant that had assessed one of my students in my first year of teaching. In the year before I came, she had been having quite…significant…issues with a variety of aggressive behaviors. They said exactly what you did, Kristina — a little stomping is a whole lot better than the alternative, and if she couldn’t muster the cognitive wherewithal to say “I’M MAD!” then that was at least better.
    Finally, Kristina, if it helps, I have never once had a student who couldn’t be in a group of at least two others, and I’ve had students all the way through the gamut in terms of both abilities and significance of their disabilities. One girl did have to be taught how to share attention and how to work with another student, but that was a rare circumstance where she’d been almost totally isolated the year before. Certainly if someone is still on edge from an earlier upset, I might choose to pull the student and work one-on-one, but that’s rare.

  12. autismvox says:

    @Nicole, Charlie tells me “bye Mom” often now, when he’s showering, in the bathroom, settling into bed. This is a fairly new development over the past several months and a sign of his growing independence and wanting to “do things on his own.” He’s not ever alone of course but really has a growing desire for maintaining his personal space. And like C if I venture into that space (intrude) Charlie is (like many of us) liable to react.
    thanks, Jennifer—-have more to say in response—think Jim and I have been getting better and better at detecting the signs of anxiety building into Charlie prior to those “neurological storms” coming (I defused one pretty quickly this evening).

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