Before I start this post, I want everyone to know we will soon be updating LSFX with more fun pictures! We just got a new camera, but I haven't loaded the software onto my computer yet that will allow me to upload the photos.
Anyway, I was thinking that I hadn't said much yet about Quinn's new school, and it might be of interest to folks who are exploring educational options for their little ones who have FXS.
Quinn's new school is a lot like his early intervention program, which we loved, though the new school is a little less warm and fuzzy.
The program, designed for kids with autism, is about five and a half hours a day and uses ABA, PECS, TEACHH and other teaching techniques. It has a 1:2 ratio. Though Quinn does not have a diagnosis of autism, he seems to benefit from these techniques. He recently did get a diagnosis of PDD-NOS, which I don't entirely agree with, but that's a topic for another post.
Quinn's also still getting occupational, physical, and speech therapy, so no complaints there. We did recently have a 30-day IEP meeting in which things were cut slightly from our previous IEP, but, well, you have to pick your battles.
One thing I'm finding tough is that I feel like I know very little about Quinn's days at school. We have a "home-school communication system" (that's a quote from the IEP, folks, most of us would call this "system" a notebook), but the teacher's notes are rather brief - often just 1-2 sentences every few days. For example, one day the note was, "Please bring extra pants." And it's not like I can ask Quinn about his day. His old school teacher wrote long notes in his "home-school communication system", we met weekly with a parent educator who talked with us about Quinn's progress and ways to incorporate more learning at home, we were encouraged to hang out and observe anytime, and the staff in general were more chatty at drop off and/or pick up.
So that's one thing I'm struggling with a bit - it's hard to rant or rave about a program that I don't know much about. Any suggestions from others about how to get more info on what my kid is doing all day at school?
Gregg Bissonette wishes Quinn Merry Christmas
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10 months ago
9 comments:
Web Cam? Can you leave a camera for you to observe for an hour make a video? Do they have any observation rooms? It must be tough. The extra therapy you mentioned, is he getting these at home during non school hours? Or at school. Is the school system covering all of this? My speech therapist advised me to send Holly to pre-school at two to help her develop a routine and learn to follow directions, work in groups on activities, have structure, ect. She also recommended George Miller, said I should visit and its an amazing program, but my regional center case worker said they have nothing to do with pre-school and I should call bananas to get a list of local pre-schools in my area. Sigh, the school thing is so stressful. But if he seems to be making progress and is happy, then they must be doing something right. Did you like your regional center case worker? My Speech therapist suggested I look into switching, as mine seems to lack experience or support. Hopefully we can all talk more about school and all of this stuff next week at our playdate. Can;t wait to see more pictures.
Quinn receives all of his services now at school, including PT, OT, and ST. This is good and bad. Good in that we don't have to deal with the scheduling, etc, but bad in that we aren't really involved anymore in what's happening.
Interesting idea re: the webcam. I think that might make folks feel weird, but probably I can set aside a morning sometime to hang out for an hour or two to observe more. I'm sure they'd allow that if I asked; it's just funny that it's not encouraged as it was at George Miller.
We love(d) our regional center worker (we now have a new one because Quinn is 3 - I don't even know his/her name yet). She was our third one. The first one was awful, so I guess there is a lot of variation. Anyway, I will email you the name of our most recent worker, the one we liked. It is not true that RCEB has "nothing to do" with preschool. RCEB helped pay for Quinn's first preschool, a mixed program for kids with special needs and typically developing kids. Unfortunately that school closed, and I don't think there are any similar programs. Also, with the budget cuts, they may no longer pay for that. George Miller's 0-3 programs are "early intervention", not "preschool" (but they are actually quite school-like - just don't say "preschool" when asking to be placed there). I'm not sure if Holly would qualify for George Miller - so that's something to look into. Basically you would need to demonstrate that she requires intensive intervention and/or would be unsuccessful in a "normal" preschool. This might be harder to do since the budget cuts.
As a preschool worker who writes in such notebooks, I say you need to just ask for more information. And make sure that you share what's going on at home as well (how well he sleeps, changes in routine that may make him "off"), that way it's a give and take. A friendly exchange. =) Make sure you let them know that you are interested in what he works on every day, how well he cooperated, if he ate well at lunch, if he was in a good or a bad mood, ect. As long as you ask politely, which I'm sure you will, I don't see why they would have a problem obliging. They probably haven't thought about it from your point of view.
ps -- that was punkin's mom =)
Hi Erika,
Thanks for the great suggestion. I just wrote a longish note in the notebook very politely asking for more info, and specifying what I especially want to hear about. We'll see how it works out!
PDD-NOS? That doesn't seem to make sense. I thought that diagnosis was given when a child was "close" to things such as FX and autism, not a child who HAS FX.
frustrating, Sarah. I hope your note works. I know very little about diagnoses, but Quinn's not the first child I've know who had a known underlying developmental issue and was also given the diagnosis of PDD-NOS. I wonder if they play fast-and-loose with that one b/c it gets them more funding or something.
It's easy to be suspicious of diagnoses, but most not done for a malevolent reason.
Ask to observe, with as little notice as possible. Drop-in?
Barbara
As a teacher myself, I would just tell you to ask ask ask. The squeaky wheel gets the oil. Understand that the teacher has lots of students so maybe you can't get long notes everyday, but maybe ask specific questions for her/him to answer.
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