Summer update - longish
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| Mon, 07-10-2006 - 12:32pm |
Hey all. Thanks for all the replies to my Shoe tying/bike riding post. I think we're just going to be very laid back about both. I've removed the training wheels from the bike, which Sam is quickly outgrowing. He tries it on the pathway to our back stairs. He refuses to try it on the grass....too hard. I'd like to have him try tying his shoes once a week, but we'll see how that goes.
Sam started Extended School Year today. We visited his class/teacher Friday. She has a daughter dx PDD. She teaches an Emotionally Disturbed labelled class at another school. It is mainly kids with severe ADHD and AS; the more mainstream, streetwise, socially cabable ED kids are in a different ED class. She has the kids from 3-5th grade. I am so happy to hear that this placement will be an option for Sam. I've been trying to find out if something like this exists anywhere in the city, but noone wanted to let me in on the secret, I guess. She said I was more than welcome visit the class next year.
I am very happy about the ESY for Sam. There are 3 Paras in his class!!!! 3!!! And I think only 15 or so kids. He's used to mainstream 24 kids with no Para so this will be totally different for him. They only allow 2 or 3 kids at a center too so sociallizing will be much easier for Sam. And the whole class staff goes out to the playground......I am soooooo going to be gunning for recess accomodations next year.
We got back the results of the FBA the school did. Not particularly long.
the Psych. only visited a handful of times. But it does look like most of the inappropriate behavior is coming from a need for attention in and out of class.
Sam's pushing kids...etc at recess to get them to interact with him. The Psych. recs included no one of one contact with the child directly after and incident so the inappropriate behavior wouldn't be reinforced. Sam has been apologizing directly to the child involved. He Psych. is recommending that he write a letter to the child and then hand it to the teacher......I wonder if this guy realizes that Sam is reading disabled and isn't able to write a coherant letter. I 'm not even sure that anyone could get him to do it inside the class. I'm not sure how I feel about the FBA yet. I'm still mulling it over.
We've started seeing a Psychologist and a Psychiatrist out of the local children's Psych. Hospital where Sam was dx'd. It was difficult getting him in actually. Our Pediatrician actually filed a complaint because she kept getting the run around about Sam....and her DH is an MD there!!! We have started him on Adderrall to deal with his severe ADHd symptoms. He's on a really low dose right now but it's really helping him focus. He kicked my butt at Connect Four this morn. He's actually taking his time deciding where to go and strategizing....amazing. But the meds have also brought into clearer focus his differences and how difficult life is. He's been complaining about not wanting to work or do anything. Saying he hates himself, wishes he wasn't born, he's stupid....etc when he's frustrated. He's also in private reading tutoring recommended by the NeuroPsych. so he has a full plate this summer. But, I don't see anyway around it. He either does all this now or the you-know-what will hit the fan eventually.
I hope that keeping him busy will help some. He hasn't wanted to go outside much. He just wants to watch tv and build with his Bioncles. The meds seemed to have helped him focus even more on his obsessions, a side effect I'm not enjoying. We went to the beach yesterday with alot of surf. And despite being afraid of the water some, getting water in his eyes, over his head....etc. he loves this beach and we can barely get him out of the water long enough to eat and get more sunscreen on.
I'm the one freaking out a bit about running him all over the place and worried that he's going to lose it. Plus how we're paying for all this stuff and I'm not working. And how I can fix it so working is even possible. And would it really be worth it if I'm going crazy trying to work, do all this stuff for Sam, make enough money to pay for daycare for the 15 month old, and all the other stuff I have to do because of DH's longer summer hours?!?! Sigh......I don't know how you guys who work do it....I can't even figure out what I'd do with the kids if I work past school hours or what I'd do to make enough money to make it worth it. If I had the time I 'd try to get the freelance illustration going so I could actually use my degree, but who has time for that?!?!
Chrystee.....hoping at least the next week goes smoothly!


Chrystee,
You sound BUSY! We did that with our summer as well.
I understand your point about the FBA. Mull it over and make sure you agree with it. We didn't agree with Mike's but since we were able to make changes in class and his teacher really is awesome we didn't persue the independent assessment the district OK'ed. Now I am wishing I did as the FBA will follow Mike and it is a bunch of JUNK! We are working on getting it updated with his triennial next year.
I typically don't like ED classes for ASD kids but the one you are looking at sounds pretty darn good. I hope it works out.
I do have to share my concerns about the stimulant meds with you. Those are the same initial reactions that Mike got with concerta and all the other stimulants he was on. At first it helped the concentration but he became more obsessed with things and more withdrawn. Soon he wasn't sleeping well and his anxeity and sensory issues got worse as well. Soon he became an extremely withdrawn, obsessive/compulsive kids with lots and lots of outbursts.
Cait was similar but even more extreme. She tried a very low dose of ritalin once at 3 yo for 3 days. The first day was amazing. It was the first day ever she was able to do a shape sorter or ring stacker and was so attentive. Then she only slept 2 hours the next 2 nights, because extremely OCD like and anxious. On the 3rd day she jumped on Mikes back (then 1yo) and bit him latching on and wouldn't let go. She had never before been agressive at all. Needless to say she has never been put on another stimulant.
Your talking about him not wanting to go out and play with bionicles all the time is exactly how Mike started out. I just wanted to let you know our experience because sometimes it just doesn't work out for our kids. It does work for some others so you may just want to keep an eye on it.
Thanks for the update.
Renee
Renee
Thanks so much for your input...I value it greatly since I know you've BTDT and Mike and Sam always sound so similar.
I'm torn with the stimulant meds because Sam's attention level is sooooo impaired that he cannot read for even 2 minutes. And with the reading disability he really needs to work hard to be able to someday read independently and I just don't know how that will happen if he cannot focus long enough to sound out any words that aren't familiar to him. And of course, most words are unfamiliar to him right now. He's still getting caught up on "the" and every time he has to stop and think, he has to start allll over again. It's excruciating for everyone involved.
Getting him motivated to read is another story all together. Even pre meds anything that was hard for him was nigh impossible to get him to do. And reading is so important...I'm really worried and angry at him at the same time. I feel like we are doing all this work so he can read and be more independent and he has absolutely no interest in it at all and whines about everything. I think he is scared about becoming more independent. It's way to comfortable having us around doing everything for him. He knows that learning to tie his shoes, ride a 2-wheeler, read, write....etc are all steps to eventually (way in the future) moving out and being on his own and that is freaking him out a bit so he doesn't want to do it. He has actually said that he doesn't want to grow up. He's 7 and he's just now really been BM potty trained and now will dress himself without much of a fuss and we've been working on that for at least 4 years. So I guess by the time he's a teenager he'll be reading, tying his shoes, and riding a 2-wheeler, right?
The Dr. we are working with is very familiar with Dev. Delayed kids and knows how cautious we are feeling about the meds (specifically the stimulants.) We are going very slow.
Thanks.......Chrystee
Dear Chrystee,
Just to say that one of Malcolm's best pals has been on Ritalin now for a period of time AND has finally learned to read on it. He is more obsessive, does stim out pretty hard going off it at night. But his focus is better in school and during homework. His dx is also PDD-NOS, same as Malcolm's. He also has had to have quite a bit of tutoring in order to really finally be able to read, BUT he can now read very well. He is 8 years old and super smart. His parents resisted drug therapy til now, did diet interventions, etc. etc. etc.
So yes, it can work.
Sara
ilovemalcolm