Re: Education: I really need some help with this one.

[Guest guest]

I don't know how you psrents deal with all this plus raise happy kids. I can't

believe you encounter these issues at the schools. Aren't these programs

regulated by US Dept of Education? Isn't there some govt. agency at some level

who could assist you in making these schools toe the line and give your kids the

education and services that they deserve? Or am I really being naive! My

illness was late onset so, while I wasn't super coordinated, I got along fine

until my mid 50's. This is heartbreaking and maddening that these kids are

forced to walk long distances, do stairs, etc. and no concessions are made for

their limitations. Is there something we, as individuals who deal with this

disease, can do to help?

Jeanne

[Guest guest]

Wow - you really have your hands full with this decision.

I spent 10 years working in private schools and the past 4 working in the county

public school system. The difference in availability of accommodations both

under a 504 or an IEP are staggering between the 2 systems. It has been our

experience that private schools - unless specifically designated to be a school

for kids with special needs - do nothing to help facilitate kids with physical

or learning disabilities because they are not governed by the same laws as

public schools. I don't want to start a fight with anyone here...private

schools can be wonderful...but it has been OUR experience that they are not the

best places for kids with physical disabilities.

" They won't allow Adam to use the closest gate. " - is absurd. Fight it! If that

gate provides the least restrictive access to campus and classes then they MUST

give him that accommodation. Elevators are a hassle for kids however, even at

the private school they let us have a key to the elevator so that didn't

have to wait for assistance. In high school that should not be an issue. And it

should be written into his plan that he is allowed extra time to move between

classes. We have over 3,000 students on our campus and kids receive passes to

use the elevators when they are injured...kids in wheelchairs have free

access...that's the law.

spent the better part of the past 3 years in the hospital homebound

program. He would start each school year great and by late Oct/Nov was too

tired to get to school every day. For us, in our county, the program is a

farce. The first 2 years they sent a teacher to the house to teach math and

science, math and english for a whopping 2 hours a week. Then he had to

teleconference in to a class for the other subjects twice a week. He is gifted

and these phone calls were very frustrating to him because he was ahead of the

class and hospital homebound would not offer gifted classes. Last year, he was

on something called PLATO classes. He is basically teaching himself and calls

into the teachers one a week for 30 minutes each. Absolutely ridiculous and

provides no social interaction whatsoever.

I got him into summer school for Algebra and he just completed that course. He

made it through 6 4-day weeks, from 7:10-12:50 each day! He is working on PLATO

to get English and Biology done so that he will be on track and a sophomore like

he's supposed to be when school starts. I have enrolled him in the public

school closer to our home, where I work. (Last year we tried a public school

designed for technology, you had to apply for acceptance, and it had a much

smaller student population with a smaller campus. He still got exhausted, it

was in a not so nice part of town and he was so far away when he got sick in

school for me to just pop over and pick up.)

needs the socialization as I am sure Adam does. I would not recommend the

medical leave. Another point to consider is that it becomes a logistical

nightmare for standardized testing, and coming close to the time of ACT's and

SAT's nothing replaces being in a classroom.

Perhaps you could get them to do a modified schedule? Do the Math, English,

Science, whatever else he needs to graduate on campus and find alternative ways

to complete electives. Does your state have a virtual school?

Sorry this is so long...but the subject of schools and making things more

accessible to disabled kids has become a central focus of my life.

Keep us posted.

[Guest guest]

Hi Jeanne!

Unfortunately, laws are subject to subjective interpretation.

It is my thought, that we do need to crusade to Washington like the folks

involved in the Autism issues have done. Someone needs to get the attention of

our government and have them understand exactly what it's like to be a unique

kid in a unique situation. My CMTer looks like a healthy kid. He's 6' tall and

well built. But when he starts to walk...you know something is wrong. Now he

needs to use a wheelchair to get around school and that puts a stigma on him.

Teachers and administrators don't know what it's like to have a kid come home so

tired that they have trouble using a utensil to eat dinner. Or see them fall

asleep before they leave the parking lot on the ride home and sleep until dinner

and then struggle through hours of homework.

I don't want my son to get his education by breezing through. But I do think

that if a student can prove they have grasped a concept in 2 problems, there is

no need for them to do a set of 50!!

I am happy for you that your CMT didn't manifest completely until later in your

life. Unfortunately 's has accelerated faster than anyone thought it

would. We deal. He is a happy teenager I think. He has a great sense of humor

and helps out when he can. He's looking forward to starting a new school year at

a new school and making some friends other than the ones he has online.

Maybe we can add this subject of schools and accommodations to the next big

meeting for CMTA and see what happens with it? Gretchen - any ideas?

[Guest guest]

,

 

This is really cool. I hardly get time to read mails, but read yours

today. I think the topic is amazing and of utmost importance. Please follow it

up.

 

Best wishes!

 

Reema

[Guest guest]

,

Thank you so much for your email. It was so helpful. I called Dept of

Education Civil Rights and the attorney said that he will back me 100% on this

issue. He also said that using a razor scooter can be written into the IEP and

if they won't do it to file a due process and OCR will help me. I am so glad I

kept fighting I think I can win now.

Thanks Again

[Guest guest]

,

I was at a few colleges with my daughter and several students use them to get

around campus. Adam's school was built by prison architects not school

architects so it is very spread out. The paper has been doing stories to cover

up the mistake by saying its a large campus to accommodate growth when in fact

the school district is shrinking. They don't have enough security to man the

building to they are doing all this PR to make this seem like a good idea.

In a message dated 7/31/2009 4:59:28 P.M. Pacific Daylight Time,

phantomsec4@... writes:

<I've never heard of asking to use a razor scooter around campus, but that's a

great idea. <

[Guest guest]

- That's great news! I've never heard of asking to use a razor scooter

around campus, but that's a great idea. I hope you are able to get it approved!

Stick to you guns and keep on fighting! One by one we can make a difference for

our kids!

>

> ,

>

> Thank you so much for your email. It was so helpful. I called Dept of

> Education Civil Rights and the attorney said that he will back me 100% on this

issue. He also said that using a razor scooter can be written into the IEP and

if they won't do it to file a due process and OCR will help me. I am so glad I

kept fighting I think I can win now.

>

> Thanks Again

>

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