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| Fri, 08-25-2006 - 9:50pm |
I am mulling ideas for what to do with and for Malcolm, now that we have no placement and are not likely to get one we are comfortable with by beginning of school. I know we can get at home tutoring while we look and am considering other options of what else we can go after from BOE when we meet in a few weeks... BUT I want to make a bigger difference for my boy RIGHT NOW and my sense is we may be in position to go after BOE for lots of extras, under guise of emergency situation, with the goal of working him into a leaster restrictive environment some day -- I want to try to help him possibly (big maybe) be able to move into an NT private school with small classes or even one of the high-functioning autism programs that at LONG LAST the NYC BOE seems to be starting, very small number of classrooms around City at this point, and I need to find out more, but I know they ARE creating them. One of Malcolm's past swimming instructors is now team teaching an 8 kid Asperger's room in Brooklyn with careful mainstreaming, elementary school, and she says it is going well.
I have contacted a receptive language intensive program called Lindamood Bell that works with autism and other learning disabilities -- to see if doing an intensive for a month or 2 might be beneficial to Malcolm. Receptive language is still a difficulty for him, one that he masks and even special ed teachers don't figure out where he is missing information. Doing the testing to find out if this might be useful is expensive in itself and actually, our neuropsych will know lots about this program and also knows Malcolm well -- so when she gets back from vaca, I will ask her opinion about the pg. for Malcolm in hopes of finding out in advance if testing for this pg. would be a waste of time and esp. $ or a good idea and one we might propose to BOE... Anyone know anything about this program?
I am seriously thinking of also going for 3 or 4 hours a week of OT, one trained in SID and maybe also one who uses How Does Your Engine Run. Malcolm does need much more work in regulation and self-calming, and so far all these special ed school OTs (2 half hours a week, often in group of 2) seem to be a HUGE waste of time!! While Malcolm was falling apart in classroom this past 6 mos, the pop tart OT was working on him tying shoelaces --- which Malcolm could already do, he just didn't LIKE doing it. OK, now he enjoys it... I want some serious OT for SID, the big root of problems here, now.
I also am thinking of proposing that BOE also pay for ASD school RDI consultant to work with Malcolm one-on-one, or maybe enroll him in some social skills classes being run around the City by some serious experts. I figure why not see if we can give him an even bigger leg up!!! He can do so well in groups of NT kids, except of course when he doesn't. My theory is that Malcolm is learning so much so fast, but he gets overwhelmed when he doesn't know what to do and he needs much more social practise and more guidance.
If we really load him up, I will pull back on afterschool activities except horse riding -- that I will up to at least 2xs a week and going swimming with his friends, no lessons, probably keep Tae Kwondo once a week as well. We shall see what else he wants to continue, baseball lessons, basketball lessons, etc. But tutoring will never be more than 4 hours a day plus no hour each way on the bus -- so I figure we have a new commodity -- more time!!!
Of course, I'm also dreaming a bit as well, who knows yet how much we can really get -- but we are paying big bucks for big guns and I'm trying to look at all this as maybe a big opportunity!!! And I'm trying hard to think WAY outside the box for the future of my gorgeous, smart, funny amazingly-tall 9 year old dude.
What do you think? If you had to pick what would help a high sensory child with lots of language and growing social skills to really learn to self-regulate and self-calm, what would you think would be the most important thing(s) to try?
Sara
ilovemalcolm

Yeah, thanks, LR. Malcolm has tons of expressive language now and if it is just the 2 of us or all very familiar people, I can use reason with him very effectively. So can other people he trusts, I notice even his girlfriend or other best pals can reason with him and they are also 8 - 9 years of age. But now he is starting to step out on his own, act and react more independently of me, and when he feels wronged or misunderstood or unfairly accused, well, he can really overreact. And this overreaction happens esp. if he is not comfortable with the person(s) and hardly ever when he knows and trusts people. Even if I am there, often he won't listen to me. He doesn't want me to step in and help, he wants to figure things out for himself.
But how to assist him in his growing independence? If he doesn't get in situation where he really loses his temper, his other coping mechanism, the older one that he uses alot less now, is to withdraw. THat was what he always did when little, and he GOT lots of help with that mechanism and now he copes and uses his withdrawals reasonably well, as a tool. He is very verbal now about needing downtime, he reads books or puts on his headsets. It is obvious when he needs this and ISN'T giving it to himself, because everything turns into a distraction. If I observe him being very distracted, I will tell him to TAKE a break and relax -- many times he can relax even for 15 - 20 minutes and then rejoin an activity and reconnect.
The staying connecting and then fighting (even to escalation of physical, although he does seem to reserve this for pop-tart teachers and esp. those restraining him, lol) -- well, this is new, this year and even around time of starting the Zoloft in the Spring. I do look at this as development, maybe too fast and definitely without enough help. He also gets in fights, real arguments with reason and offense and defense with trusted friends, now, this is also new. He is becoming QUITE a good arguer, if he doesn't completely lose his temper, and even when he does lose it, he will often reconnect to coming up with good arguments. Of course, BEFORE, he would only scream, now he tries to argue, even badly, it's progress.
I wish I knew how to really help him with his "hot temper", but it is so unpredictable when someone is going to deeply offend him, and his reaction goes from 0 - 160 so quickly. And it really happens so seldom, except of course when he was in THAT SCHOOL.
Think, think, wonder, ponder. What will I ever do when he's all grown up and independent and not my responsibility anymore, dream, dream.
Sara
Phew, loads of stuff there.
I can say that Lindamood-Bell is THE BOMB! Great program. Not exactly sure how it works with kids who are already good readers as it is mainly a reading program but they do work alot on comprehension. Our school this year is going to be a LB school. You can go to therapy centers, they provide consulting and trainings to school to have a center at a school (like ours will be) or you can do a home based less intensive program. The center based program goes for like 4K-10K depending on what the child needs. I have heard nothign but great things.
Mike's SDC teacher uses the LIPS part of LB in her class and has for 2 years. She went for training in it to be an official LB teacher. That is for basic reading as her kids are that far behind and she raves about that part of the program. I don't know about it personally as I haven't used it for Mike. The kids are really good readers so I never considered using it. Mike has some difficulties in reading comprehension but he is really coming along with the approaches his teacher uses.
I want "How does your engine run" too but the OT's in our district are flipping LAME-O. (don't get me started!) Fortunately my company just got the contract to do some of the kids the 2 district OT's can't cover. One is Cait (YEAH - though the district OT is already trying to take her over to deny services) but we don't have Mike. The district OT that has Mike is lame and doesn't do anything, or rather does the bare minimum. She is my one complaint, but Mrs. M does all his stuff with him anyway.
The OT that did Cait's assessment (last outside contracted OT) actually recomended for me a book called Tools for Teens. I just got it in. I haven't read it yet but it is supposed to be the same idea. I will let you know.
Overall in this case I say go for some stars, the moon and a few planets. He does need intensive services, that is obvious since the episode at the last school has left him without an appropriate placement. Seems the will have to provide at least the level of services he was getting before since they don't have anything appropriate for him.
Renee
Sara,
I kind of agree with everything said. I know Malcolm has no issue with academics, and academics will be pushed at most schools. I think in your home program, you are right to concentrate on those areas of receptive language comprehension (which as LR pointed out, is
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wow, lots to consider!
I don't know anything about the Lindamood-Bell program, but it does sound great and what Renee said about it makes it sound even better. reinforcing the newly developed language can only help!
Weston has had lots and lots of "how does your engine run". The OT in WI was well trained in this program and worked with him to help get him regulated (tho the mainstream teacher really didn't believe in it and was a real pain). The OT here also has continued to use this program with him and has taught the teachers how to use it as well. The resource teacher is using RDI with Weston and is trying to get the teachers to use it as well. Anyway, the 4th grade teachers, OT and I all credit his ability to self regulate to the how does your engine run program. W/o this program I don't know that Weston would be able to have his special "Weston" program. We are a week and 1/2 into the school year and we're still tweaking his program. He has new teachers (5th grade) this year and they're having to work to understand his difficulties and his strengths. We use the how does your engine run at home all the time, too. When he's getting frustrated doing homework we talk about does he need to put on the headphones for some music, wrap up in his blanket, bounce on his hop ball? He regulates well at home, but he's also starting to get much better at regulating w/o intervention by an adult at school. We're starting to look for new outside activities with other people that don't know him. (I'm terrified! he can't wait).
I hope you get all you're shooting for. those big guns MUST earn their pay!
Betsy