Crisis update
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| Sat, 07-22-2006 - 5:59am |
School cannot keep him. Physical escalation is out of control, they feel. And yes, there has been more than one incident, but it does seem to me to be related to the drug therapy AND this school has not been able to really get through to him on a consistent basis, although they have tried very hard! But we still have awhile to get the drug levels therapeutic and he manages for a long period of time, and then WHOMP!! Although the escalation does also seem episodic and it is just so hard to tell what is going on, because his difficulties are not consistent enough! So we will keep him at school 2 more weeks. Then literally I am not sure what we will do.
Very likely we will keep him home and homeschool awhile until we get his drug therapy under control. He could go back to ASD school probably, but I am NOT sure that is the right thing to do. We might need to get these behaviors under control before considering THAT even. Well, I mean, I might want to. He hates school right now. Of course he doesn't hate it when he is being successful, but this last few months, hell, year at both schools, has not been good for his love of learning... And his therapist is away in France for 6 weeks as of today, BAAAD timing, dammit! We can reach her by phone and email, and will.
BUT the school also recommended several day treatment programs to help him with his splinter social and behavioral skills and dealing with his temper while still working on the drug levels, because they will also have a clinical component. Because of course we have never had Malcolm out of control before, we don't know anything about these programs and I am willing to consider them. We need to set up appts. and start doing research, lots of people to talk to, etc.
The only really good news is that dh is always brilliant in a crisis (although dreadful at the day-to-day slogging) and so he is calling people, making appts., bringing me chocolate, playing with Malcolm HARD and making him laugh, making me laugh, back in HIS body and pithy and insightful, LOVE this man in a crisis. Not that I am happy we are having one...
more as we go,
Sara
ilovemalcolm

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Sarah,
So sorry that you are going through all this. That is hard. I sure know it is. I am still surprised that Mike's school didn't give him the boot in 3rd grade when he went through a really extra tough time.
I am sure you guys will make the right decision and get everything worked out. I hope it begins to work out really soon for him.
One thing that helped us almost immediately in the short term was to make life less stressful for Mike. We nixed all activities that were providing extra stress even if they seemed like the should be fun or theraputic for him. By simplifying life for a bit and taking away lots of those social stressors it did help and now we are adding them slowly back in (probably alot of the reason we are seeing a bit of an escalation but not nearly as bad as in 3rd grade)
Don't know if that would work for you or backfire. Just a thought while you are trying to get meds under control.
I understand your frustration with the inconsistency too. Mike is the master of inconsistency. What will make him throw a tantrum today he can easily handle tomorrow. Sometimes we plan on something being a problem and we plan really hard for it and it is no big deal. Other things we think are going to be no big deal cause a crisis. Have no ideas there that you aren't already doing, just lots of sympathy.
Sending the wine and goodies your direction with the resident cabana boy.
Renee
(((((((((((((Sara)))))))))))),
I was seriously hoping you would post an update to the effect that the school would keep him and everyone would redouble efforts.
visit my blog at www.onesickmother.com
Sarah,
what med is Malcolm on?
Hi Sara..
I live out on Long Island so I know our school systems may be different. But have you tried the BOCES programs? They are set up for kids with issues. Some quite like yours, others better, others worse. I admit I don't know enough about it.
But I dod know if I am not mistaken. It is part of the public school system, so I don't beleive there is a cost factor.
Some are really good others well. But being that it is part of the school system they can not throw your child out.
www.nassauboces.org/
http://eboces.wnyric.org/wps/portal/E1B
www.pnwboces.org/
This should be the link to their general web page. I know Nassau county and WEstchester have BOCES programs. But research it out a little bit to see if they have a program worth it. That might fit Malcolm. And ifthey do maybe fight with your home school to have him placed there. I am not sure where in the city you are. But Queens is not to far from Nassau and Bronx with Westchester.
But again it is a public school. But set up to Assist and educate.
Rina
Rina,
Where on The Island are you?
visit my blog at www.onesickmother.com
I live near Port Jefferson. If you are on the border of Nassau/Suffolk thenI would say I might be about 20-30 minutes east from you.
I was just checking out another interesting website.. www.aha-as-pdd.org
They have support groups and other interesting info. I think at some point I migth check out a support group. There is one over at Stony Brook so it may be not a bad idea. Plus I found thta BOCES does have a program for kids with Asperger's/. I am not sure if we need it or am up to that point. So far our school district hasn't been too bad and I need to see what 6th grade will bring. He will be inan inclusion class so for us that is big thing he had always been in a regular class. But It may be fun to meet mid way.
Rina
Josh aspie age 11 1/2
Ethan the charmer age 7
Jeremy the trip age 5
Thanks, everyone! Love you guys.
I may be tying up the services of more than a few of our Cabana Boys for awhile, but as they are studly, superhuman beings and I have to sleep sometime...
Well, we don't want the school to keep him. We went in prepared to fight them with all our might and reason -- which as you all know is formidable and they wouldn't have stood a chance -- demand a aide, wait out the drug trials, redouble their efforts, etc. And when I saw them all sitting there waiting for us, I never wanted him to attend that school again. They were completely unwilling. End of story. And I knew any effort I made would end up bad for Malcolm no matter what. End of story. they will keep him til end of ESY and we are willing to let them, because they will do everything in their power to have him finish in a blaze of success. We have to work with school on what we are saying to him, but as he is leaving a week before summer session is over --- well, we have to figure out what we are saying.
And I will call the ASD school, but honestly, we have alot to sort out here and I think I WANT him to be at home and homeschooled awhile while we investigate and sort things out, work more on drugs and levels, with his psychotherapist, get him back reading and doing math, attending shows, listening to music and hanging out with his friends, still doing all his afterschool activities with his friends like horseback riding, Tae Kwondo, Chess Club, etc. We are very interested in considering having him in the RIGHT day therapy treatment program that will work with him on truly understanding his rages and how to self-calm and use strategies for a period of time, but we do not have the time to really investigate thoroughly and come up with something by Sept. No time at all, hardly, esp. as I am taking a 3 week break from NYC with him starting in 2 weeks. We all need it.
I hardly think popping him into ANOTHER school at this point is a good idea!!! And I do not think dh and I will clearly know what we think is best for our son by second week in Sept. when school starts up here, SO ...
I really feel that the cause of the outbursts is complicated and many-faceted. Part of it is definitely psychological, but the drug therapy is also messing with him some. He is SO much more connected on Zoloft. He understands so much more of what is going on around him and he wants to participate, be his own man, duke out his problems, well, literally and figuratively, unfortunately. His skills are way behind his intelligence. He gets much more stressed in his body! But then he also has more and more moments of startling, amazing clarity, even when very angry, skeaking so profoundly about what is bothering him, able to listen. He wants to be more a part of decision-making. He gets angry when he feels others are being unfair, making unfair demands, not listening to him And unless he finally loses control (physical restraint is often involved here, BTW) he keeps arguingand trying to win. He HAS been able to switch out of his "stuck" place and see another point of view even when very upset, this has been amazing to see him do. BUT it is all so very new, overwhelming for him sometimes.
And IMHO the REAL reason for the outbursts at school is .... THEY ARE SCARED OF HIM! And, dammit, he knows it. What power. I wish I'd seen that earlier. They are all little women, really, not so long out of college. He is huge, and he can go all the way in his rage, and they are completely terrified of him. I saw this clearly yesterday when he started having a mini-meltdown at end of field trip. It was a tiny one, heart wasn't too much into it, a little physical pulling/resisting but mega-LOUD, if you didn't know him you would be put off by the sheer noise -- we started a stuggle of wills 'cuz I wasn't having it and I wanted him to give it up immediately or consequences he wouldn't like. And several of those little girls with panic all over their faces came running out of classroom to ask if I needed help! I said firmly 'NO', got him to go under the table and gave him 3 minutes to calm down, during which I would not talk to him so he could do it. We were dressed in hat and backpack calmly walking down the stairs and leaving quietly together in under 2 minutes. OK, they were amazed. I enjoyed that...
Paula, I can't think of any food he is eating that is new, and we never had these outbursts before last summer day camp. I think it is more developmental and circumstantial and a little assisted by higher anxiety with drugs both physical and because of more connection, maybe still because Zoloft is not right drug but the evidence about that is really inconclusive at this point.
Anyways, that's my gut about why. I just HATE that my gut wanted him to go to this school in the first place... but maybe all will still be well and him better for everything. I sure hope so!!! Today he is doing great, off on a subway adventure with some of his pals, writing music, planning to whomp me at chess later. I had another little tussle with him about homework reading this morning, and I said to him "None of that crap here! I saw what you were pulling at school which got you OUT of things you didn't want to do and that will so not fly here." He immediately dropped it. Whined twice more and did as he was asked.
BUT I do get that what is under this behavior needs to be addressed immediately -- he hurt himself some little girl teachers -- and in my opinion, schooling and placement can just wait a little damn bit til we know what to do next.
Sara
ilovemalcolm
Sounds like a good plan to homeschool him until you know what the right placement is. That will probably dispell enough of the stress. If they are unwilling to try and are afraid of him you are right. It isn't a good place for him to be.
I know as a special ed teacher the WORST thing you can do is show fear. He may be big and strong for 9 but he is still 9. I have met some tiny women who could handle adult sized severely autistic people with behavior challenges and not show fear. The ones who did not show fear and treated the clients as people first always had the best rapport with the clients and had less problems with behavior. Those that were obviously scared had the most problems. They aren't monsters they are people.
There is this little elderly lady who brings 3 severely delayed men to horsebackriding each week. One bolts, (he is about 6'5"), one will self abuse on occasion. The other seems pretty mellow. They alldouble her in size and I have never, ever seen her afraid and she has the best rapport with those men. I know that they likely can get quite agressive. So I really don't feel badly for 20 somethings who are afraid of a 9yo.
That is one thing Mike's teachers never did. They never were afraid of Mike and they always treated him with kindness, compassion and even just loved him to death regardless. If they had been afraid of him or unwilling to try I would certainly have pulled him quickly as well. That will never work out.
I hope that some fantastic placement makes itself known to you soon.
Renee
Yes, thank you so much for saying that so clearly, Renee,
And I hadn't really figured that out with the clarity I now have until I saw it staring me straight on in the face, and honey, ALL Malcolm was doing was yelling really loud and lying on the floor, fer Pete's sake. OK, it was really really loud, boy can scream, can't imagine where he got those pipes from, assault on the eardrums and all that...
Now I am starting to really get angry. I am writing for complete records from the school, actually from both schools, in case we end up having to document where rages began to get out of control and how! I can't even speak much right now about all this because I start shaking. AND I am so ready for him to never set foot there again. I don't yet believe in my heart that he won't get past this and learn how to deal with his anger. He IS always learning, he's just the learning-est boy ever. BUT...
He did make some huge progress on some fronts there, but otherwise, well, they mis-treated him. I do have this problem with Malcolm, that is, he is so verbal and smart and funny and animated that --- trained special ed personnel --- forget. AND noone there really had his trust or went about to earn it. And of course yippy young pop-tarts with little experience -- OK, have to stop, can't write more, TOO ANGRY.
Malcolm took a chunk out of the pop-tart school psychologist. I should be appalled at what he did, but somehow, I'm just NOT.
Sara
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