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Hi Chris. My son is 17 with OCD and still has a problem erasing or using

white-out until he feels the letters are formed perfect. This has been a hard

one for us to conquer and hope you have more success. As they get older, of

course, the computer for school work is helpful, but in my case, my son's

fingers in anticipating touching the keyboard brings on aniexty. He can't

seem to win here. I just wish I had an answer to this one too. I have a

daughter who has Tourettes and some OCD, but manages it well, who does not

want anyone to know she is under special ed. She is 12 and is into being

very self aware of being different and how kids don't accept differences

until taught. Anyway I have tried to tell her to be accepting of herself and

to not care so much what people say or think and to only rely on her feelings

of self confidence because that is the only way sometimes to get through

things. I do believe kids with any type of disability must have thick skin

to get through and that is just the way it is. It doesn't help I know, but I

feel it is better to teach reality than anything else. Pam

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Hi and List

Something to be considered as we send our posts to this List is to also send

a copy to our medical care professionals [if we know their email address].

I often find myself writing and receiving messages which are very

informative about our OCD. And although I may have or hopefully will be

able to share it with those on our health care teams, I am not always sure

that I will.

In my case, I frequently send copies along to Jim Hatton for his files for

our family. I have discussed this briefly with him and he has never

indicated that I should stop my practice. In fact in one instance before

joining , he suggested that I mention to another person here

in San Diego [but not Roman] to copy him on posts concerning their

children.

What a great opportunity for us to keep our doctors updated on our daily

crises without having to actually call them on the phone or to leave a voice

message.

Just a thought

Jim in San Diego

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Hi Chris:

Kelsey is doing very well having 1-2 bumps a week instead of daily. It

sounds like the erasing compulsion is kinda up there on her hierarchy right

now. Just like any kid I think many of our beloved OCDers can't wait for

the end of school and summer.

Unfortunately the truth is that our OCD kids are " different " . This is

something they generally have to learn to live with if they are to face

their OCD and find the determination to recover. Not wanting to be

different is really hard for our pre-teens and teens. It is so hard to

watch them struggle with this. For Steve with his perfectionism OCD it is

really a toughie. The up side of this is that it is a great motivator for

them to overcome their OCD.

Perhaps you could get Kelsey's teacher to let her dictate her journal

writing into a tape recorder, or use a computer. That way she is doing the

work but not having to get caught up in the erasing and rewriting.

Sometimes Steve just needed a short break from doing his CBT. He would hit

a plateau and even fall back and it was time for us to be patient and wait

until he felt a bit stronger to tackle more tough stuff. This could be

happening to Kelsey with the erasing. Then suddenly one day you will see a

breakthrough.

You might want to let her know that when she has bossed back the OCD her

handwriting will go back to being its usual beautiful self. She is a very

brave and determined girl, you must be very proud of her achievements. I

tell Steve, 25% of adults can't do what you are doing. Since he is very

competitive this is a powerful motivator for him to keep trying. Good

luck, aloha, Kathy (H)

kathyh@...

SAt 10:24 AM 5/25/99 -0700, you wrote:

>From: Roman <ChrisRoman@...>

>

>Hi all,

>

>Well, I was hoping we could make it through the last three weeks of school

>without having to work out a plan for accomdating Kelsey's OCD. But now I'm

>not so sure. (We seem to be having 1 or 2 big bumps in the road each week,

>but I have to remember they used to occur daily.) We've found it very

>difficult to make progress on Kelsey's erasing issue. I think the CBT in

>that area isn't too effective because she's spending so much of her day

>failing at resisting the compulsion to erase during school hours.

>Hopefully, she can do better this summer when she's experiening success

>with the CBT on erasing and not having to do a lot of other writing.

>

>Now she tells me her stomach starts to hurt at just the thought of school

>and all that erasing. Same thing when I tell her it's time for homework.

>Yesterday she came home crying about how her work looks so sloppy and her

>teacher probably hates it. (This from a child who had some of the neatest

>handwriting I'd seen!) This morning she got in the neighbor's car to go to

>school and had an anxiety attack when I tried to say goodbye because she

>didn't want to go.

>

>I don't think I need a formal plan for school at this point, because her

>teacher is very understanding and willing to help and there's just a few

>weeks left, but I'm wondering if any of you have suggestions I could make

>to the teacher to reduce some of the pressure so that she'll continue to

>go. She's also concerned about being singled out as different if

>accomodations are made (other kids might ask why she gets an oral spelling

>test or to skip journal writing but they don't). Those of you with 504

>plans and IEPs, how do your kids handle this?

>

>As always, thanks for your help,

>

>in S.D.

>

>P.S. I went public today with one mom and guess what? She has a friend AND

>an in-law with OCD and was quite understanding. I plan to talk to the girl

>scout leader too. You were right about people perceiving them as generally

>highly functioning and it not being such a big deal. Maybe that's why they

>recommend (in the March protocol for How I Ran OCD Off My Land) that kids

>tell at least one peer when they get better...because they'll see that

>they're not perceived as so " weird " after all. Anyway, thanks for your

>responses on going public. They really helped me screw up my courage.

>

>

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Hi

I'm sorry that Kelsey suffers from the schooling. That sounds like a natural

response to the probelms and difficulities she has now. My son is a 16 year old

and his school performance dropped from high ranking to almost failing. He,

too, lost his motivation for study and also tried to escape from the school. We

tried with home schooling for two weeks. Since the doctor wanted him to get the

social part of the school, we went back to the school. He has the same promblem

of messy hand writing. We solved this by using the computer. His typing is

very fast and neat. Yes, when he types, he still erases and re-types. But,

that's ok, the end result is still neat.

You are lucky that Kelsey's teacher is willing to reduce her homework to

accomodate. Our teachers are so stubborn and are not willing to reduce any and

hence the work load is tremendous and frustrates Chris. As far as the concern

about being singled out, maybe she can try to do the homework, but in a much

less loaded fashion. For instance, writing the journal means to write one line

about her mood that day.

Hope you find some way to get around with this issue. Take care.

TC

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Hi

I'm glad you had such a good experience when you told your friend about OCD. I

have often found that when I tell someone they know someone or have a family

member or know someone who has a

family member etc.

As far as being the same or treated the same as other kids in school, it's a

touch and go thing. Ava doesn't like to be singled out and she doesn't want

people to know she has OCD, and

usually that's easy because it's not easily noticable for her at this point. One

thing I've always done (and do even more now) is talk about what " fair " means.

I do this with my preschoolers

too. Fair doesn't mean everyone getting the same thing, it means everyone

working together to make sure that everyones needs (not wants) are met. We all

like to shop: I'm willing to park

farther away from the store so the other people who also like to shop but are

handicapped can park closer. Everyone needs to complete their work: everyone

gets to work under the best

conditions for their particular brain.

It takes time to introduce this concept of fairness based on needs being met

rather than everything being the same but once kids get it, that their needs

will be met too, they like it. A

good place for kids to learn about how different brains do different things

better, worse or just different is from material at this website:

http://www.allkindsofminds.org.reaching.html

My daughter has read some of this stuff because a friend I knew worked in the

office and gave her the books. They don't mention OCD, it's mainly about LD, but

the idea that it's ok to be

different is there. And the social skills " catalogue " is great.

Dana in NC

Roman wrote:

> From: Roman <ChrisRoman@...>

>

> Hi all,

>

> Well, I was hoping we could make it through the last three weeks of school

> without having to work out a plan for accomdating Kelsey's OCD. But now I'm

> not so sure. (We seem to be having 1 or 2 big bumps in the road each week,

> but I have to remember they used to occur daily.) We've found it very

> difficult to make progress on Kelsey's erasing issue. I think the CBT in

> that area isn't too effective because she's spending so much of her day

> failing at resisting the compulsion to erase during school hours.

> Hopefully, she can do better this summer when she's experiening success

> with the CBT on erasing and not having to do a lot of other writing.

>

> Now she tells me her stomach starts to hurt at just the thought of school

> and all that erasing. Same thing when I tell her it's time for homework.

> Yesterday she came home crying about how her work looks so sloppy and her

> teacher probably hates it. (This from a child who had some of the neatest

> handwriting I'd seen!) This morning she got in the neighbor's car to go to

> school and had an anxiety attack when I tried to say goodbye because she

> didn't want to go.

>

> I don't think I need a formal plan for school at this point, because her

> teacher is very understanding and willing to help and there's just a few

> weeks left, but I'm wondering if any of you have suggestions I could make

> to the teacher to reduce some of the pressure so that she'll continue to

> go. She's also concerned about being singled out as different if

> accomodations are made (other kids might ask why she gets an oral spelling

> test or to skip journal writing but they don't). Those of you with 504

> plans and IEPs, how do your kids handle this?

>

> As always, thanks for your help,

>

> in S.D.

>

> P.S. I went public today with one mom and guess what? She has a friend AND

> an in-law with OCD and was quite understanding. I plan to talk to the girl

> scout leader too. You were right about people perceiving them as generally

> highly functioning and it not being such a big deal. Maybe that's why they

> recommend (in the March protocol for How I Ran OCD Off My Land) that kids

> tell at least one peer when they get better...because they'll see that

> they're not perceived as so " weird " after all. Anyway, thanks for your

> responses on going public. They really helped me screw up my courage.

>

> ------------------------------------------------------------------------

> Having difficulty getting " in synch " with list members?

>

> Try ONElist's Shared Calendar to organize events, meetings and more!

> ------------------------------------------------------------------------

> The is sponsored by the OCSDA. You may visit their

web site at http://www.ocdhelp.org/ and view schedules for chatroom support at

http://www.ocdhelp.org/chat.html

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Sorry, the website is:

http://www.allkindsofminds.org/reaching.html

Dana Carvalho wrote:

> From: Dana Carvalho <clayvon@...>

>

> Hi

> I'm glad you had such a good experience when you told your friend about OCD.

I have often found that when I tell someone they know someone or have a family

member or know someone who has a

> family member etc.

> As far as being the same or treated the same as other kids in school, it's a

touch and go thing. Ava doesn't like to be singled out and she doesn't want

people to know she has OCD, and

> usually that's easy because it's not easily noticable for her at this point.

One thing I've always done (and do even more now) is talk about what " fair "

means. I do this with my preschoolers

> too. Fair doesn't mean everyone getting the same thing, it means everyone

working together to make sure that everyones needs (not wants) are met. We all

like to shop: I'm willing to park

> farther away from the store so the other people who also like to shop but are

handicapped can park closer. Everyone needs to complete their work: everyone

gets to work under the best

> conditions for their particular brain.

> It takes time to introduce this concept of fairness based on needs being met

rather than everything being the same but once kids get it, that their needs

will be met too, they like it. A

> good place for kids to learn about how different brains do different things

better, worse or just different is from material at this website:

> http://www.allkindsofminds.org.reaching.html

> My daughter has read some of this stuff because a friend I knew worked in the

office and gave her the books. They don't mention OCD, it's mainly about LD, but

the idea that it's ok to be

> different is there. And the social skills " catalogue " is great.

> Dana in NC

>

> Roman wrote:

>

> > From: Roman <ChrisRoman@...>

> >

> > Hi all,

> >

> > Well, I was hoping we could make it through the last three weeks of school

> > without having to work out a plan for accomdating Kelsey's OCD. But now I'm

> > not so sure. (We seem to be having 1 or 2 big bumps in the road each week,

> > but I have to remember they used to occur daily.) We've found it very

> > difficult to make progress on Kelsey's erasing issue. I think the CBT in

> > that area isn't too effective because she's spending so much of her day

> > failing at resisting the compulsion to erase during school hours.

> > Hopefully, she can do better this summer when she's experiening success

> > with the CBT on erasing and not having to do a lot of other writing.

> >

> > Now she tells me her stomach starts to hurt at just the thought of school

> > and all that erasing. Same thing when I tell her it's time for homework.

> > Yesterday she came home crying about how her work looks so sloppy and her

> > teacher probably hates it. (This from a child who had some of the neatest

> > handwriting I'd seen!) This morning she got in the neighbor's car to go to

> > school and had an anxiety attack when I tried to say goodbye because she

> > didn't want to go.

> >

> > I don't think I need a formal plan for school at this point, because her

> > teacher is very understanding and willing to help and there's just a few

> > weeks left, but I'm wondering if any of you have suggestions I could make

> > to the teacher to reduce some of the pressure so that she'll continue to

> > go. She's also concerned about being singled out as different if

> > accomodations are made (other kids might ask why she gets an oral spelling

> > test or to skip journal writing but they don't). Those of you with 504

> > plans and IEPs, how do your kids handle this?

> >

> > As always, thanks for your help,

> >

> > in S.D.

> >

> > P.S. I went public today with one mom and guess what? She has a friend AND

> > an in-law with OCD and was quite understanding. I plan to talk to the girl

> > scout leader too. You were right about people perceiving them as generally

> > highly functioning and it not being such a big deal. Maybe that's why they

> > recommend (in the March protocol for How I Ran OCD Off My Land) that kids

> > tell at least one peer when they get better...because they'll see that

> > they're not perceived as so " weird " after all. Anyway, thanks for your

> > responses on going public. They really helped me screw up my courage.

> >

> > ------------------------------------------------------------------------

> > Having difficulty getting " in synch " with list members?

> >

> > Try ONElist's Shared Calendar to organize events, meetings and more!

> > ------------------------------------------------------------------------

> > The is sponsored by the OCSDA. You may visit their

web site at http://www.ocdhelp.org/ and view schedules for chatroom support at

http://www.ocdhelp.org/chat.html

>

> ------------------------------------------------------------------------

> How many communities do you think join ONElist each day?

>

> More than 1,000! Create yours now!

> ------------------------------------------------------------------------

> The is sponsored by the OCSDA. You may visit their

web site at http://www.ocdhelp.org/ and view schedules for chatroom support at

http://www.ocdhelp.org/chat.html

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  • 2 years later...

In a message dated 2/3/02 3:45:10 PM Pacific Standard Time,

writes:

> I have documentation that s' gone downhill and that they are having to

> use the Rifton chair to control him. And they say a one on one aide would

> cause regression because of the high employee turnover and the fact that

>

> would know he was " different " if he got all that attention from one

> aide????

>

> I can't wait for his ARD meeting end of this month! We're in Texas.

>

>

>

,

You may want to contact your dept. of health and human services (or whatever

Texas calls it) and find out what their guidelines are on using manual

restraint is for hospitals and community programs for individuals with

developmental disabilities.

It may take some digging but here in Wisconsin our state Medicaid has

guidelines for their providers.

I think sometimes schools don't see that putting a child in a positioning

chair is a restraint but it is and can be dangerous if not supervised

correctly. It can also be reinforcing certain behaviors that are

" maladaptive " .

While the school doesn't have to follow state regs. other than dept of educ.

they may have a greater understanding of your concerns. (If they receive

State medicaid payments for therapies they may need to follow medicaid

guidelines in all areas).

Just some ideas that I've seen used around here.

Karyn

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  • 5 months later...
Guest guest

Hi Ezra, Contact your local arthritis foundation they have a pamphlet called when your student has arthritis and they will send you as many copies as you need. Hope that helps,

Ellie and Riley 4 poly

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Guest guest

Hi Folks,

Our six year old son with systemic jra is entering first grade in

september. I have a meeting on friday with his teachers to talk to them

about jra and how it might affect him in the classroom. Any suggestions

or sites I can access for the information? I thought I would copy a

brief description of systemic jra and then add stuff that his

kindergarten teachers saw last year. Thanks in advance for your help.

and Ezra (six year old systemic)

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Guest guest

Hello ..school is such a topic..when it comes to jra.

Make sure you set up a plan with them..like let him get up and move around if he is sitting to long..so his legs don't stiffen up on him..I know my daughter, who is 17 now..would get stiff from sitting to long, she couldn't sit on the floor..so she had to use a chair. Plus make sure you mention that your child..may miss alot of days and also get the rheumy to write an excuse covering days missed from the jra..believe me..schools will use this against a child no matter what reason if it isn't covered by the rheumy.

Someone mentioned about contacting the arthritis foundation for a pamphlet..they do have those..but with Tab..I got the schools to contact the dr. or his nurse..I have had my ups and downs with Tab regarding schools...just when you go make sure you have all bases covered..even sit down and think of questions to ask them..what they have to offer..they have to provide a handicap bus if needed, physical therapy, and occupational therapy..anything that is needed to make your childs stay in school a safe and pleasant one..please don't do what I did with a couple of schools that Tab went to..I let them bully me and call the shots..not anymore..lol!!

Hope all goes well

karen(tab17..poly)

From:

Reply- Subject: Re: School issues Date: Wed, 31 Jul 2002 16:25:02 -0400

Hi Folks,

Our six year old son with systemic jra is entering first grade in september. I have a meeting on friday with his teachers to talk to them about jra and how it might affect him in the classroom. Any suggestions or sites I can access for the information? I thought I would copy a brief description of systemic jra and then add stuff that his kindergarten teachers saw last year. Thanks in advance for your help. and Ezra (six year old systemic)

Send and receive Hotmail on your mobile device: Click Here

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Hi ,

Check out the artritis foundation web site. It has a lot of information there. I 'll try to add the link but I mighth fail.

http://www.arthritis.org/resources/classroom.asp

Okay, I think it worked. Go there and read all the information about kids and school. Then print some off. I signed a waiver with the school so they could get my daughters records. Keep communicating. It is hard to anticipate all that your child might need. If he didn't do an all day program last year he may become much more fatigued this year. He may also need to stay in on cold days because of increased pain. Like I say it is hard to anticipate everything. Just tell them what type of things he needs help with at home (buttoning, being carried at times, etc) we are going to face a fight this year with switching to the high school with 100 minute classes, crowded halls which make using her rolling backpack a problem etc. Call frequently, check in with the teacher, counselor and nurse. and definetly let them know he may miss school like said. And check in with your child to make sure no one is teasing or tormenting. We had that problem last year and she was in 9th grade. e, with 15yo daughter joe with poly

<maltabet@...> wrote: Hi Folks,Our six year old son with systemic jra is entering first grade inseptember. I have a meeting on friday with his teachers to talk to themabout jra and how it might affect him in the classroom. Any suggestionsor sites I can access for the information? I thought I would copy abrief description of systemic jra and then add stuff that hiskindergarten teachers saw last year. Thanks in advance for your help. and Ezra (six year old systemic)

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you go girl :)

i have also had my problems with schools when parents have to go up against schools you have to take a stand and have someone behind you to say yes this happens this is why i always get copies of doctor papers reports and labs this covers my butt also keeping a calender for the child so if later in the school year something comes up you have it documented if your child goes to see the doctor make sure you ask for a paper stating the child was seen on that date also if the child is not feeling good call the doctor and have it on record you did so in the childs record schools will try getting you in trouble with Educational neglect due to absents this was one that cant be helped but if i had not kept the records they could have charged me with this and it really gets me to after i told them about s condition they still didnt believe me you have to dot all I's and cross all Ts lololol the pamplets that the arthritis foundation has are good if you hand them to each teacher and you tell them to READ them if they dont read them then you know your going to have a hard time with that teacher be prepared for anything from the school make your face known there

you have the rights to get your child a education without ANY problem but we still have to fight for that right because each school system is different well thats right BUT the Federal Law is for every school also and that goes far more than just the school system will be going back into the homebound school program just for precaution and work from there due to the winter is far worser than summer if you need any help just ask the group make sure you state anything that may come up as you do the IEP and 504 plans like this is all i can think of at this time unless anything else arises due to RELATED problems of JRA this kinda points to anything Robbin

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  • 4 weeks later...

They may not be able to afford the electric door opener. But it would

be a REASONABLE Accomodation if someone helped her with the door. if

it comes to the fact that she gets stuck outside or inside, maybe

there is an alternative door she could use...bang on or something for

someone to help her. Having someone help her open the door is a

Modification and a reasonable accomodation!

If this is a persistant problem, call the school board or the ADA

technical center at 800-949-4232

When I was in kindergarten, they had no problem helping me with the

doors. There was no way I could get them opened by myself, because I

wasn't tall enough or strong enough, even with stools. This was just

something I had to get used to and deal with. There will be

frustrations through her life, and mine. We have to learn to come up

with alternative ways of doing things. We can't expect everything to

be perfect.

a

> Well, yesterday was 's' first day of Kindergarten. NOT

HAPPY HERE!!

>

> They said that her 504 would cover any and all modifications she

needs in the

> classroom. The classroom is fine, but my concern is that she

cannot get in

> or out of the classroom by herself. We were expecting one of those

handicap

> push button door openers since the classroom is accessed from the

outside

> (there is no hallway, all classrooms at this school have outside

doors), and

> is too heavy for her to push or pull, even with the door knobs

lowered.

>

> They say they cannot do anything to the exterior doors.

>

> Can anyone point me in the right direction here??

>

> Thanks,

> Ay

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This is disturbing. Just from a personal perspective, we've had such

an easy time with our elementary school (suburban Boston). We've

never had to fill out a form or, for that matter, even investigate

what our rights are. We've just come up with proposals to make things

easier for Becky -- install a lower rail on the stairs, make some

modifications to the bathroom, buy a special chair with a built-in

stool -- and they've been done; end of story. Just yesterday the

principal called our home. He was a little agitated because some work

on a different bathroom that our daughter will be closer to this year

(she's going into fourth grade) won't be finished until the end of

next week, three days into the school year. We told him, no problem.

(The modifications are still there on the bathroom she used last

year, it's just that it's a longer walk.) But is that service or what?

Becky is achon. Does have a more disabling dwarfism type? Do

you have any insight into why school officials are being difficult?

For that matter, does she have to be able to open the classroom door

by herself -- isn't that something the teacher would be doing for all

the students, not just ?

Dan Kennedy

>Well, yesterday was 's' first day of Kindergarten. NOT HAPPY HERE!!

>

>They said that her 504 would cover any and all modifications she needs in the

>classroom. The classroom is fine, but my concern is that she cannot get in

>or out of the classroom by herself. We were expecting one of those handicap

>push button door openers since the classroom is accessed from the outside

>(there is no hallway, all classrooms at this school have outside doors), and

>is too heavy for her to push or pull, even with the door knobs lowered.

>

>They say they cannot do anything to the exterior doors.

>

>Can anyone point me in the right direction here??

>

>Thanks,

>Ay

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Parents with school accommodation issues such as those listed below can contact

their state Protection & Advocacy System office with questions. (Each P & A has

web site and 800 number).

============================================================

From: Dan Kennedy <dkennedy@...>

Date: 2002/08/30 Fri AM 09:57:16 EDT

dwarfism

Subject: Re: school issues

This is disturbing. Just from a personal perspective, we've had such

an easy time with our elementary school (suburban Boston). We've

never had to fill out a form or, for that matter, even investigate

what our rights are. We've just come up with proposals to make things

easier for Becky -- install a lower rail on the stairs, make some

modifications to the bathroom, buy a special chair with a built-in

stool -- and they've been done; end of story. Just yesterday the

principal called our home. He was a little agitated because some work

on a different bathroom that our daughter will be closer to this year

(she's going into fourth grade) won't be finished until the end of

next week, three days into the school year. We told him, no problem.

(The modifications are still there on the bathroom she used last

year, it's just that it's a longer walk.) But is that service or what?

Becky is achon. Does have a more disabling dwarfism type? Do

you have any insight into why school officials are being difficult?

For that matter, does she have to be able to open the classroom door

by herself -- isn't that something the teacher would be doing for all

the students, not just ?

Dan Kennedy

>Well, yesterday was 's' first day of Kindergarten. NOT HAPPY HERE!!

>

>They said that her 504 would cover any and all modifications she needs in the

>classroom. The classroom is fine, but my concern is that she cannot get in

>or out of the classroom by herself. We were expecting one of those handicap

>push button door openers since the classroom is accessed from the outside

>(there is no hallway, all classrooms at this school have outside doors), and

>is too heavy for her to push or pull, even with the door knobs lowered.

>

>They say they cannot do anything to the exterior doors.

>

>Can anyone point me in the right direction here??

>

>Thanks,

>Ay

===

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For a dwarf child found to have a disability under Section 504, the public

school is obligated to provide her equal access to school programs and

activities. If they keep the classroom doors open all the time, that's

fine. If staff routinely open the doors for the kids, that's fine. If the

children open the classroom doors themselves, then they need to somehow make

the door accessible for the dwarf child. An automatic door opener is one

way. Lowering door handles and door pressure would be another way.

http://www.ed.gov/offices/OCR/504faq.html (see especially terminology

section at the end)

http://www.ed.gov/offices/OCR/docs/FAPE504.html (excerpted below)

Students With Disabilities Must be Educated With Nondisabled Students

Students with disabilities and students without disabilities must be placed

in the same setting, to the maximum extent appropriate to the educational

needs of the students with disabilities. A recipient must place a person

with a disability in the regular educational environment, unless it is

demonstrated by the recipient that the student's needs cannot be met

satisfactorily with the use of supplementary aids and services. Students

with disabilities must participate with nondisabled students in both

academic and nonacademic services, including meals, recess, and physical

education, to the maximum extent appropriate to their individual needs.

As necessary, specific supplementary aids must be provided for students with

disabilities to ensure an appropriate educational setting. Supplementary

aids may include interpreters for students who are deaf, readers for

students who are blind, and equipment to make physical accommodations for

students with mobility impairments.

Feel free to write me at ruth.ricker@... with specific questions.

Ruth

Ruth E. Ricker

Technical Assistance Specialist

US Department of Education

Office for Civil Rights

617-223-9680

The information and guidance provided by OCR does not represent a

determination of compliance or noncompliance with any of the laws enforced

by the agency. OCR provides technical assistance to interested individuals,

organizations and recipients of Federal Financial Aid in an effort to

acquaint them with the requirements of Federal civil rights laws. Staff

respond to inquiries or fact situations presented by interested parties. In

the context of the facts presented, OCR provides guidance on civil rights

compliance issues. Only a legally supported compliance determination made

in the context of an OCR complaint investigation or compliance review

represents an official determination of OCR of compliance with the civil

rights laws it enforces.

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  • 2 months later...

Im not saying this is the case, but I remember when I was in mainstream

education at that age - it was easy for me to escape lessons I didnt like

cos the teacher was accutely aware of the fact that I could easily tire or

get sick and as a result would let me " opt out " of some lessons. I used to

play to this fact and escape lessons I didnt like.

Took one very firm teacher and a summer vacation spent catching my reading

skills up to make me realise it wasn't worth skiving :)

As I say, not saying this is the case - but just a thought.

Kev

> school issues

>

>

> Hi all, just wanted to ask the older crowd about exhaustion in

> the school setting. Holli is in grade 1 and gets really tired in

> school. By after lunch, she is almost at the point where she may

> as well go home. Her teacher is a real driver, keeps the kids

> really busy. Excellent teacher, very supportive but very

> challenging. What aget did others get an in school computer to

> help with the exhaustion level. I want her to get the skills

> needed too. Holli's a solid type 2. Not weak and not walking.

> Just wanted to get some experience, thanks.

> Susi

>

>

>

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Well... when I was a senior in high school, we got a brand-spankin new 40

pound 4-function electronic calculator that had neon vacuum tubes for the

readout. It was for physics class. I kid you not about this thing. No

one was allowed to touch it. We had to keep to our slide rules and scrap

paper. Do I qualify as " older crowd? " <smile>

jv O ======---,-----,----,---,--,-, o

|--Q \ o

----\ \ o_

________ () ()\_ Fish to Live, Live to Fish -<_><

On Tue, 12 Nov 2002, Susi Vander Wyk wrote:

> Hi all, just wanted to ask the older crowd about exhaustion in the

> school setting. Holli is in grade 1 and gets really tired in school.

> By after lunch, she is almost at the point where she may as well go

> home. Her teacher is a real driver, keeps the kids really busy.

> Excellent teacher, very supportive but very challenging. What aget did

> others get an in school computer to help with the exhaustion level. I

> want her to get the skills needed too. Holli's a solid type 2. Not weak

> and not walking.

> Just wanted to get some experience, thanks.

> Susi

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Sounds very much like Jordan, type II in the middle, 13 years old now. He

fatigues easily too, so we spoke to the teachers and for the most part they

are very accommodating to his physical needs. For example, they don't

expect him to do the same amount of writing in the same amount of time as

all the other kids. He would either get some additional time, or less

writing to do. They just make sure he understands the work, not so much

that he can hammer through it because it's not realistic and has nothing to

do with how well he grasps the material. Also, a time released B Complex

helps (but taken with food or he gets a stomach ache and the day is ruined).

Jay

school issues

Hi all, just wanted to ask the older crowd about exhaustion in the school

setting. Holli is in grade 1 and gets really tired in school. By after

lunch, she is almost at the point where she may as well go home. Her

teacher is a real driver, keeps the kids really busy. Excellent teacher,

very supportive but very challenging. What aget did others get an in

school computer to help with the exhaustion level. I want her to get the

skills needed too. Holli's a solid type 2. Not weak and not walking.

Just wanted to get some experience, thanks.

Susi

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My brother, SMA II and 16 years old, has problems with getting tired while doing

school work. He writes really slowly, but he's even slower on the computer. His

IEP requires the teachers to cut down his work, assigning him less problems or a

lower word requirement or whatever. He usually has somebody else write for him

on tests.

When I was little, I can remember the therapists telling me how hard it was

going to be for me to keep up with the work and write and all that when I got

older, and they started making me learn to type when I was like five. The

advantage is I learned to type a lot earlier and faster than my friends, but I

can still write just fine. So yeah, everyone's different...

~e~

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Hi Susi,

It's been a long time since we last chatted, but I'm so pleased to hear that

Holli's still doing so well. ph hasn't started school yet (sept next

year) but at our meetings to discuss the adaptations needed to the school

they've agreed to put in a therapy couch/bed so he could have a snooze at

lunch time. Maybe that could be an option for Holli? I don't know how it

would work in practise but the theory seemed sound!

Debs Fleming

school issues

> Hi all, just wanted to ask the older crowd about exhaustion in the school

setting. Holli is in grade 1 and gets really tired in school. By after

lunch, she is almost at the point where she may as well go home. Her

teacher is a real driver, keeps the kids really busy. Excellent teacher,

very supportive but very challenging. What aget did others get an in

school computer to help with the exhaustion level. I want her to get the

skills needed too. Holli's a solid type 2. Not weak and not walking.

> Just wanted to get some experience, thanks.

> Susi

>

>

>

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  • 3 years later...

Why doesn't Elaney want her teacher changed? Does she already know the

teacher? Does she have friends in the homeroom? I think it would be better to

handle

the change before it becomes a problem. If it is done later, it seems that

she will have to explain over and over why her schedule is being changed. I

understand Beth's position in letting the child have control, but if It is a

change you are pretty sure she will need, it would be less disruptive to do it

now.

I would, though, really listen to whatever the reason is that she doesn't

want the switch, especially if it is a friend issue. Boy, school starts early

where you are! Good luck. Kim

In a message dated 8/12/2006 7:38:01 AM Central Standard Time,

rebpick1artist@... writes:

I want to change her homeroom teacher BEFORE school starts, but

Elaney doesn't want me to. Should I let her keep the teacher and wait

and see what happens? By then it will be harder to change teachers.

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-

I'm in favor of requesting a homeroom teacher based inside the main school

building. By all means, Elaney's condition warrants it! Because she has an

IEP, as you know, it can be changed at any time, and getting the change on the

IEP under the " accommodations " section seems quite appropriate and

reasonable. I would definitely request an IEP team meeting asap, before school

starts. If the team does not yet understand that climate changes/pressure

changes

greatly impact arthritis, they need to hear it from you now!

I hope this helps Elaney! Please let us know what you decide and how it

goes.

Sincerely,

Beth Sekelik, Mom to , 5 years

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:

I'm sure you will get a lot of opinions on this one. Here is what Mike & I

have discussed with Hannah. Hannah needs to feel she has some control over some

her life decisions. We have told here the big medical decisions will be made by

us. She can decide much of the little stuff. If she wants to try something,

unless it screams Hannah will get hurt, we are willing to let her try. She

needs to learn her limits and when something is not a good decision. I feel if

we do not let her make some of these decisions this disease will not only take

over her physically, but mentally as well. I think I would let Elaney try it

and since you have the IEP you can always say we tried this and it's not

working, we need to make a change.

Please let me know how it goes, I'm sure we will be facing similar situations

with Hannah this year.

Beth (Hannah, 9 (almost 10), 6 weeks until 2nd opinion

Happy Thoughts...Be Well

rebpick1artist <rebpick1artist@...> wrote:

Here is the problem: Elaney has a homeroom teacher in an outer

portable

building. When it gets cold out she will have to go in a warm building,

out in the cold, into warm then back again. All the kids will need to

do this since the building is just to small. However, since Elaney's

homeroom teacher is outside that means she will have to do it more

often. I want to change her homeroom teacher BEFORE school starts, but

Elaney doesn't want me to. Should I let her keep the teacher and wait

and see what happens? By then it will be harder to change teachers. I

don't know what to do and school starts in 3 days. By the way, Elaney

has an IEP but none of this was considered at the last meeting because

the schedules were not out yet.--- & Elaney(12 poly)

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My Rheumatologist... well... ex pediatric rhemy always pushed the " making

your own decisions as early as possible' thing. I think it depends a lot on

the child and parent but overall, I agree with her.

I found that throughout many of my younger years, my parents made decisions

for me that I did not like and some for the best but some were also things

that I could do and yes, wanted control over.

You have very legitamate concerns.... but I think that if you layed it all

out to Elaney.... you know.. just questions.... what if you are unable and

than you have to change.... dealing with classmates.. friends.... Why she

wants to stay where she is?

In terms of the IEP and changing. I'm sure it will be harder to change after

the fact but at the same time, I suppose I feel like.. that's the point of

being disability accomodative... if A doesn't work.. than we go to plan B.

But o course that can be hassle. At the same time.... I think it's really

important for your daughter to make these decisions for herself as much as

possible as long as it isnt dangrous or something. Te downside with this

situatioin is that if you do let her do this but feel worried abouut it and

let her know. She might just push herself hard to not tell you if in fact it

does become a problem so that it isn't like.. I told you so.... Believe me,

I hav done this many times over the years.

So, I don't know..... that's a hard one.. well to me it is... b/c I feel

both sides of the coin but have a lot more bias towards making decisions for

self and learning from them with what one can and cannot do with this

disease.

I

On 8/12/06, mnmomof1@... <mnmomof1@...> wrote:

>

> Why doesn't Elaney want her teacher changed? Does she already know the

> teacher? Does she have friends in the homeroom? I think it would be better

> to handle

> the change before it becomes a problem. If it is done later, it seems that

>

> she will have to explain over and over why her schedule is being changed.

> I

> understand Beth's position in letting the child have control, but if It is

> a

> change you are pretty sure she will need, it would be less disruptive to

> do it now.

> I would, though, really listen to whatever the reason is that she doesn't

> want the switch, especially if it is a friend issue. Boy, school starts

> early

> where you are! Good luck. Kim

>

> In a message dated 8/12/2006 7:38:01 AM Central Standard Time,

>

> rebpick1artist@... <rebpick1artist%40> writes:

> I want to change her homeroom teacher BEFORE school starts, but

> Elaney doesn't want me to. Should I let her keep the teacher and wait

> and see what happens? By then it will be harder to change teachers.

>

>

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