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Joe's Mom
01-31-2005, 09:03 PM
I had a meeting with my son's counselor at high school today. We were trying to figure out why his scores on his PSAT were lower than any formal test scores he has ever had before. The issue of having to remain seated at a desk for a couple of hours without any break came up and it occurred to me that at home, he never sits at a table or desk surface to do school work . . .always reclines on a couch or in a lazy boy chair. He does sit at table for meals and is very much humped over (He has kyphoscoliosis, btw).

So, I began to wonder if anyone out there has ever had help with adaptive seating for kids with kyphosis in the classroom?

His counselor told me that if the doctors issue a statement that his kyphosis can result in problems remaining seated for lengthy times, he will be qualified for Title 15 which simply means that adaptations to his day/program/seating must be made.

Anyone out there with any experience or ideas? When I asked my son if the seating at school is comfortable, he said "no". I asked him what he does and he said he slouches sideways all day in the desk. Now that can't be good, can it?

Alison
02-01-2005, 03:52 AM
Could you perhaps make a visit to the adaptive equipment/disabled equipment place where you live. Your doctor or physical therapist should be able to help you here. There might even be one at the local hospital. They would probably be able to help you with stuff such as seating/slope of work surfaces etc.

In Western Australia the place is called "The independent Living Centre". In case I'm not making much sense about what such a place is, here's its website http://www.ilc.com.au.

We visited the place when I was in the last lot of bracing, and just after I had surgery (for scoliosis), they were a great help, and came up with a few things.

I agree with your son, seating at school is far from comfortable. The chairs are usually very hard and you can't quite "fit" in them properly, especially if you have any curvatures in your back. And you feel the stress on your neck from looking down all day. And when you get sore, you get wriggly, and your concentration goes haywire...................

For about a year after surgery, I had adaptive equipment in the classroom (I hated it and was embarassed but it did help). I had this support cushion thing that hooked on the back of my chair (it was molded and had webing through it. Heres a picture of it, we flippped it upside down. We took one of the school chairs to the appointment to make sure if fit ok. Sometimes I would also swap chairs with the teacher (they had ergonomic chairs)

http://www.ilc.com.au/item.php?id=546

I applied to have adaptive equipment for my exams (mid year and end of year) ones from Year 9 to Year 12. I found that I could not sit comfortably for long enough, and I would get a stiff neck and wriggly and the seats were yucky.

For my "senior exams" (Year 11 and Year 12) I was supervised in a separate room from the main exam with the other "special exam" cases. The things I applied for were

: An angled writing board (sloped board that fit on the desk)
: An ergonomic chair that had a height and slope adjustment
: 5 minutes per half hour of the exam, of "non working time". This was where I got to get up out of my chair, close my exam paper and stretch/walk around the exam room.

We had to supply the adaptive equipment (I use them on my desk at home so it wasn't a problem), but it was definetly worth it. When I did Year 12 the first time, I had sligthly different arrangements (due to long term illness through year 12) and wasn't able to get up and move around (because I had extra writing time, and the rule in WA is that you can't have both). My final school rank was 65.85 (which is quite low). When I did it the second time round I had extra non-working time and my school rank was 84.10. Part of the increase was because of doing it again, but I firmly believe it was partly due to the diferent arrangement, in my situation.

Throughout Year 9 to Year 12, the arrangements were tweaked/trialled in "less important tests" to see how they went and whether they were effective and to see if they had to be changed.

In normal class time, I carried around a lever arch file and leant on it, which was my substitute board because the board was too heavy.

I know this was for scoli stuff, not kypho, but hopefully its given you some food for thought and perhaps some things to explore

Regards

Alison

Mary Lou
02-01-2005, 06:37 AM
My daughter just had surgery for her Kyphoscoliosis eight weeks ago and her school has been great! I would think Joe could be treated the same as say a child returning from surgery or a child with a broken foot...make whatever changes/accomodations he needs. I'm sure they will want a note from his doctor, but that shouldn't be a problem either. As for the comfort of the seats in school, Jamie never complained, but then again it seems like they have a different type of desk in every classroom, so maybe that helped.

Talk to your son's doctor and guidance counselor. Maybe they can do something as simple as letting him use a pillow or get up and walk around a bit more than usual.

Mary Lou

Carmell
02-01-2005, 01:07 PM
I'm not familiar with Title 15. I'd check into that before agreeing to allow the school to pursue any accommodations under this law.

I am familiar with the 504 plan which is a federal law that requires all public schools to provide the necessary accommodations for children with physical needs to get an equal education. My Braydon has a 504 plan set up with his school. He is only in 4th grade, but I plan to continue the 504 plan throughout his education. Braydon's 504 plan states that the school must provide a pillow on the back of each chair Braydon sits in. He is also never to lift anything more than 5 pounds. His PE class is modified to include no jumping or any exercises that would potentially jar his spine, etc. Each 504 plan is set up with the parent(s), the principal, the school/district nurse, and any teacher involved with the child.

Joe may not need something as "permanent" or long-lasting as a 504 plan, but IMHO its nice to know this is available for kids who need some adjusting of their physical needs.

Good luck and keep us posted.

mamakay
02-03-2005, 06:05 PM
Joes mom!
I can hardly type fast enough to answer this and share my experience.
It's your right.
Yes I think you most certainly qualify for Tiltle15 or 504 that Carmell mentioned. My dtr just was released from the "handicap tutor 504 or Tiltle15 as you said. I don't remember the exact name, but yes all those questions were asked and documented and the school is required (if you met the requirements ie: Dr's note) to accomodated AND adjust the study correculum accordingly.
That means your child has the clearance to get a pillow, stand up or change positions in the middle of a class or testing and have extra time bc of physical exhaustion at sitting for extended period of time bc of the physical problem.
These departments are seperate within the same school at my dtr's but they said after her tutoring (which was pretty lousy) and returning to school that with the Dr's note she could continue under a different program.
I felt her teacher's are very accomodateing and she can sit pretty long or can get up so I have not requested the specialized programs. You do have a legal right to these and every time we even had a meeting I had to waive my right to a lawyer or 5 days notice.So!! Find out from the school system and I wonder why they didn't do this for you already? Didn't your son miss alot of school and they wondered why?
Or if he has not done the surgery I'm sure you have a Dr that will fill out the paperwork (one page) as we did.
I don't know if Texas is different on all this but I'm really sure it's the same everywhere.
Keep us posted on it!!!!!!!!mamakay

Joe's Mom
03-11-2005, 11:11 PM
Update on the 504 plan . . . after my discussion with guidance counselor and researching 504 plans I realized that it WAS the school's job to do this plan, not the orthopaedist, so I contacted the director of special ed at my son's school. With some difficulty, I was eventually able to get the secretary to agree to have her call me. One week passed, and no return call. I was ready to pay an in-person visit, when the counselor called me back to see what I wanted. I told her, I wanted a 504 plan for 2 reasons . . . to keep the school from lowering his phys ed grade because he can't do sustained running and to get what he needed to allow adaptations to the SAT/ACT test. Again, she was dumbfounded as how they would do this. So I pulled up a site I visited for the American College Testing group and emailed it to her. Within an hour the director of special ed called me. She at first asked me if I even knew what a 504 plan was! Hah! I explained to her exactly what it was and what adaptations I was seeking. She said I was exactly correct in my understanding and she is setting up a team meeting next week.

So, now I have to get a PT/Adaptive Seating referral/eval, but it seems we are on our way. Hope so.

BTW, the phys ed teacher who lowered my son's grade last year was fired about a month ago! Not because of what he did to my son, but due to some irregularities in grading of students this year!