Re: kids and school

[Guest guest]

We had a situation come up with our oldest non LP adopted. We are

pituitary and at about age 10 she came home and asked the question. Are

you and mom midgets. This was in the 70's and the word was OK in those

ancient days. I told her yes but then asked several questions. Do

these kids live in any nicer house than we do. Do they drive a better

car. Do they take more vacations than we do. The answer was no to all

of them so my reply was that I guess it doesnt make any difference then

does it. That was the end of it and it was never brought up again.

Today she is 5'10 " and 45 years old and still my georgeous amazon. My

advice to her has always been to stand tall and proud. We have a great

relationship and neither of us would have it any other way. Hope this

helps. Super Elf

nuist@... wrote:

>

> I've got a non LP son, age 4. Some of his classmates have made a few comments

> about his old Dad ( thats me) that have bothered him.

>

> We've had a little talk and I think everything is cool again, but does anyone

> have some good thoughts on what to say to make him feel better as it will

> likely happen again and i just would like to be prepared.

>

[Guest guest]

Lori,

This is my experience as a kid with CMT in school.

Although it was in the 60's, in Jr. High we also had a " presidental fitness "

program. While I could play minimal basketball and volleyball, the rest of PE,

like running the track, etc. overwhelmed me with fatigue.

I complained to my parents, Mom got a letter from my neurologist giving me a

medical excuse to be exempt from PT. And instead of PT, I was assigned to the

library, where I could do homework, read and help the librarian, which I loved.

I just couldn't do the whole 'team' concept. No one at the school ever bothered

to suggest an individualized program (like what I was already doing - swimming,

biking, horsebackriding on my own)

As for writing, I developed my own unique style which in a way was a precursor

for calligraphy. When first learning to write, I picked up the pencil with my

left hand, it was natural. But the teacher insisted that was wrong, grabbed the

pencil and shoved it in my right hand. Not natural and confusing. At school I

was mandated to use my right hand, at home I did homework and wrote letters with

my left.

I had private PT at home 2 or 3 times a week in the evening during Jr. High

Never had OT.

In high school, when my peers had time on the tennis courts, I had an extra

study hall to do homework, again exempting me from P.E. by a doctor's letter.

Years later in college, I never bothered to register for P. E. My senior year,

the registrar said I could not graduate without taking P.E. - one credit! I

bitched about that BS, I had more than enough credits to graduate, my parents,

the Registrar, the Dean met Coach and we came up with a plan: Since I had been

biking the campus for 4 years, I would write a 5 page paper on the merits of

biking. I loved that, what a no brainer, I got the P.E. credit, and also an " A "

in P.E.

There were simple solutions all along the way for me, without alot of hassle or

fuss and it was all pretty low key and unobserved by my peers or made public. My

peers and friends caught up with me on weekends, biking, swimming and

horsebackriding.

Gretchen

[Guest guest]

Hi Lori,

A 504 plan is modifications done in the classroom setting. IEP's are for

children that need resource help .

My thoughts are you need a 504 plan and a health care plan. Iwouldn't go a day

without a 504 plan or IEP in our school system. They are legal documents that

protect my children. Not every teacher is

understanding and not every teacher will accommodate. I have learned that the

hard way with Adam and at 17 I am still fighting the school for his rights.

Our schools do not offer OT and that is fine with me because I wouldn't want

them to have OT at school anyway.

I have a 504 plan for and an IEP for Adam. 's 504 plan is under

the code OHI. Other heath impaired. has some classroom modifications

like handwriting fatigue, adaptive PE, tardy excuse, extra time on assignments

if she needs it. Option to use

a keyboard. She is an honor student in high school and from time to time a new

issue will pop up and we adjust the 504. We have a new school with STAIRS this

year ugh! Until now for the most part she has really only used the tardy pass.

Now with stairs she will need more modifications.

Adam has more involved CMT and is dyslexic so he needs an IEP to address

resource issues.

The schools here also do a healthcare plan. The healthcare plan address the

cold/heat sensitivity the stair issue and a 5 min extra passing period, along

with other issues that effect the day with CMT.

[Guest guest]

Hi Lori!

Kudos on getting a jump on the pre-school preparations! Our family/school

experience has been one that has been riddled with ups and downs. Kingergarten

through 2nd grade were years of great fun and alot of learning and very little

difficulty for our son.

Without going into great detail and long post, let me just say that we had to

fight tooth and nail for an IEP for our son because we were dealing with a

school principal who refused to believe that such a healthy " normal looking kid "

as she put it, was unable to walk around campus carrying books and playing PE

like all the other middle school boys. Even with documentation from our

neurologist, info from MDA and CMTA, this woman accused us of enabling his

disabilities which by middle school were very visible. He could no longer write

legibly at all, and therefore could not take notes, could not show the work in

solving mathematical equations or do scientific notation, couldn't trust his

hands when holding glass beakers or anything like that. He also required the use

of a wheelchair as each classroom was in the opposite part of the building from

the preceding one, so he was always going back and forth.

My thoughts are this - You can never start too early. Work with the school to

establish an IEP that is broadly worded. They can be changed during the year if

needed. Have them include words such as " extra time to complete assignments " ,

accommodations for assignments (ie - every other problem, or no cutting of

materials...whatever you think might pose a problem at his age) " extra time to

move from class to class " " a home set of books " things that are grade

appropriate. Fatigue is what seems to get my son down the most. By the time

he's spent 6 or 7 hours in school he is ready for a 3 hour nap and yet we still

have homework...it becomes overwhelming then he falls behind and he never

catches up.

Feel free to email me if you want other suggestions on how to go about this.

There are several of us here who have gone through this and continue to work

with the schools to make sure our kids are receiving quality educations without

negatively impacting their health.

[Guest guest]

Thanks everyone for your insight and experience in this unknown area for me. I

had never even heard of a 504 plan but will look into before I approach the

school.

Lori

[Guest guest]

Hi Lori,

Our daughter has CMT and will start kindergarten in the fall. She has had

physical therapy for the last few years, and already has an IEP because of that.

We have already met with her new school and will definitely have an IEP in place

for her in the fall.

Both my husband and I are teachers, and firmly believe that an IEP is important

for her. An IEP is part of a federal law that requires teachers and schools to

make necessary modifications for any child who has disabilities. That way a

teacher must allow for his special needs, because it is written out in a legal

document (the IEP). For instance, he may not need to do all the handwritten

homework required, may be able to use computers to do homework, may be able to

have modified phy ed assignments, etc. An IEP protects his rights to an equal

education while taking into account his circumstances. That way he cannot be

penalized (say with a lower grade) because his modified assignments are written

into his IEP.

If your son has a medical diagnosis of CMT he is eligible for an IEP under

" Other Health Impaired " or " Physical Health Disability " (label can vary by

state). You should start by talking to the special education department at the

school. It has very little to do with your doctor - he just needs to verify the

diagnosis.

As you can see, I'm a firm believer in using the laws that are in place to make

sure our kids have the modifications that they deserve. Sounds like your son is

doing great, but I would encourage you to pursue this path, as it's better to

have something in place for when he does need more help. IEPs are written and

reviewed on an annual basis, by parents, teachers and the special ed teachers

involved so the IEP will change as his needs change. The parents always have the

final say, and need to sign the IEP each year before the modifications can be

put into place.

Good luck!

Sherry

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[Guest guest]

Hi Sherry

Thanks for the information. Could you just clarify for me the need for a 504 vs

an IEP? I really thought a 504 would cover the physical needs. Kind of thought

the IEP was for extra help with classroom work etc which he really does not

need.

Thanks

Lori

[Guest guest]

Hi Lori - I know I'm not Sherry, but I was reading the posts and saw your

question so I figured I'd throw in my experience for consideration:

A 504 plan is defined as follows:

The " 504 " in " 504 plan " refers to Section 504 of the Rehabilitation Act and the

Americans with Disabilities Act, which specifies that no one with a disability

can be excluded from participating in federally funded programs or activities,

including elementary, secondary or postsecondary schooling. " Disability " in this

context refers to a " physical or mental impairment which substantially limits

one or more major life activities. " This can include physical impairments;

illnesses or injuries; communicable diseases; chronic conditions like asthma,

allergies and diabetes; and learning problems. A 504 plan spells out the

modifications and accommodations that will be needed for these students to have

an opportunity perform at the same level as their peers, and might include such

things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a

peanut-free lunch environment, home instruction, or a tape recorder or keyboard

for taking notes. "

An IEP sets goals and objectives to assist a student with learning disabilities

be able to maintain the status in school on par with their peers. It is defined

on one site as : " The term " IEP " refers to Individualized Education Program, and

is most often used in conjunction with special services or for providing

instructional services for a child with special needs. An IEP is developed to

provide detailed information that provides for appropriate decisions to be made

about a child's educational placement. "

The way it was explained to us in our school system was that the IEP actually

has more clout than a 504. Now, I don't know that that's necessarily true,

however, we have learned from experience that if you do an IEP with Other Health

Impaired as a categorizer everything included in the 504 appears in the IEP,

plus there are the actual accommodations made within the classroom and for

homework etc. It doesn't happen the other way around. A 504 will not include

goals and objectives to assist the student in the classroom.

So, while your son seems to only need physical accommodations right now, in my

experience you should consider the educational obstacles that may be encountered

in the classroom if his CMT progresses and go for the IEP. Things that you and I

take for granted, like taking notes in class, or doing writing assignments, art

work, playing instruments in music class, adaptive PE are usually not included

in the 504. A written output device will help for note taking but is useless for

math and science. While the keyboard can be included under a 504 it doesn't make

the detailed specifications for math/science issues. That would be under an IEP.

I hope I didn't further frustrate you. No one I knew had any idea of how to help

us navigate through the school system so I learned this stuff by mostly error

and alot of trials.

Good Luck

[Guest guest]

Thanks ,

I emailed the principal to set up a meeting with special services. Now I feel

like at least I am not totally clueless about this stuff.

Lori

[Guest guest]

Good Luck Lori!

I've always found it helpful to make a checklist of everything I want to talk

about before walking into school meetings. It's been my experience that very

often they have a way of changing the subject so they can skirt giving you

direct answers.

Keep us posted.

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> Thanks ,

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> I emailed the principal to set up a meeting with special services. Now I feel

like at least I am not totally clueless about this stuff.

>

> Lori

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