Re: schools and accommodations

July 29, 2009

Hi ,

I've been thinking about this. Some ideas for you to ruminate over:

Form a grassroots coalition of like-minded parents. Some contacts here might be

supportive or good resources

http://www.nichcy.org/Pages/StateSpecificInfo.aspx?State=FL

Set up a meeting with the State Board of Education.

Let your congressional reps know the issues, ask their help and ask them to

attend the meeting. Invite the all the press you can.

Contact the US State Dept. of Education (U.S. Secretary of Education Arne

Duncan) and senior staff http://www.ed.gov/about/offices/or/org_directory.pdf

start with contacts at the top.

Think about this - next summer 2010, the CMT Consortium will be in held in

Washington D.C. If you started now, got organized and going strong, had good

press, you could perhaps tie in an event on the Hill about schools and

accommodation.

Gretchen

> 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.<

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?

>

July 29, 2009

Gretchen -

Thanks for these great ideas - there's alot of good information to wade through

to determine a game plan, but I cannot think of a cause more important to so

many.

I'll keep you posted...

July 29, 2009

we dont need a crusade.Its not that important.

> Gretchen -

>

> Thanks for these great ideas - there's alot of good information to wade

through to determine a game plan, but I cannot think of a cause more important

to so many.

>

> I'll keep you posted...

>

July 29, 2009

Oh but it is that important!!

Lori

From: [mailto: ] On Behalf Of

fittness35

Sent: Wednesday, July 29, 2009 11:46 AM

Subject: Re: schools and accommodations

we dont need a crusade.Its not that important.

> Gretchen -

>

> Thanks for these great ideas - there's alot of good information to wade

through to determine a game plan, but I cannot think of a cause more

important to so many.

>

> I'll keep you posted...

>

July 29, 2009

-

No one asked you to join a crusade to help kids get accommodations in school.

You are not a parent. None of us who might be interested in one needs a

confrontation with a defeatist attitude from the start.

In my experience all good parents want nothing but the best education for their

kids when at all possible. If a child is being deprived of that education

because a school refuses to provide the accommodations necessary to help that

child then something needs to change in the system.

It wasn't so bad for you according to your posts...well good for you. Not all

kids are that lucky and the parents who really care about their children want to

to do something to make life better for their children.

My experience on this forum is that if you have no experience relating to the

issue then don't post - especially when you have nothing to gain from it except

antagonizing others.

>

> we dont need a crusade.Its not that important.

>

> > Gretchen -

> >

> > Thanks for these great ideas - there's alot of good information to wade

through to determine a game plan, but I cannot think of a cause more important

to so many.

> >

> > I'll keep you posted...

> >

>

July 29, 2009

I've been reading the stories posted by moms for a couple of years now and it

certainly seems to me that this is important enough for a crusade.

Perhaps not everyone has had a difficult time in school, but many

have experienced significant problems. I didn't know I had CMT when I was in

school, but I had a tough go at anything physical. It was embarrassng and

humiliating. Like many, I thought there was something wrong with me and I

frequently got the message that I just needed to 'suck it up' and 'stop

whining'. What a relief it would have been if it had been known that I had CMT

and it was greeted with compassion, understanding, and accommodation by the

adults in charge. That's what our kids need. That's what they deserve. It is

the responsibility of knowing adults to ensure it happens. They need our

advocacy. Yes, a crusade to promote awareness and equality in educational

opportunity is needed.

Such a campaign wouldn't just be important to our children, who are so often

misunderstood, misjudged, and ill-treated in the educational environment, but it

could be of value to all of us with CMT. CMT is not a very well-known disease.

Raising awareness of the issues our children face will also raise awareness of

the disease itself, which would be wonderful. People respond more when the

issues of children are presented. That's why the MDA speaks more about 'Jerry's

Kids', when there obviously many adults who are also afflicted with the MDA

diseases. Raising awareness can help us all.

, you have my support. Please let the group know if there's something

we can do to help.

From: fittness35 <wahr@...>

Subject: Re: schools and accommodations

Date: Wednesday, July 29, 2009, 8:45 AM

we dont need a crusade.Its not that important.

> Gretchen -

>

> Thanks for these great ideas - there's alot of good information to wade

through to determine a game plan, but I cannot think of a cause more important

to so many.

>

> I'll keep you posted...

>

July 30, 2009

In the 80s when I went to school.No one cared about a person with a disabilty.I

have CMT all my life.When I was in school the teachers and principles and the

students did not care about a student who have a disabilty.We where made fun

of.I went through it.The teasing,teachers not listening.I am not a parent,

however.

When I was a youth counsler I was teased by kids at the camp because the way I

walked.But you no what I know what it was like to be teased when I was small.

July 30, 2009

- Thank you so much for your support. I am going to spend time this

weekend trying to outline a course of action and then will post it here next

week. We'll see what happens from there.

I firmly believe that people can make a difference in the world and we need to

make a difference for our CMT community.

>

> From: fittness35 <wahr@...>

> Subject: Re: schools and accommodations

>

> Date: Wednesday, July 29, 2009, 8:45 AM

>

> we dont need a crusade.Its not that important.

>

> > Gretchen -

> >

> > Thanks for these great ideas - there's alot of good information to wade

through to determine a game plan, but I cannot think of a cause more important

to so many.

> >

> > I'll keep you posted...

> >

>

July 30, 2009

I went to school in the 70s and 80s and it was my experience that people did

care about those with disabilities, when they could see it and understand it.

For example, when I wore a scoliosis brace or when I was on crutches & a cast

after knee surgery, people understood my challenges and I received sympathy and

accommodation.

However, with CMT, a person can look quite normal, the disability is not

obvious, but the challenges are still very real. In this type of situation,

it's very common for there to be lack of understanding and accommodation. It's

also more likely that abuse and discrimination will occur. In addition, the

kids today seem to be more inclined to bully and abuse other kids than when I

was in school.

These are the types of challenges our kids face today and that's why awareness

needs to be raised.

July 30, 2009

I hear ya....and how I hated school! I even tried to skip kindergarten one

day.had fun until I got a good spanking. I wanted to learn but was so ignored.

I'm making up for lost time and want to learn/know everything I can. School was

not a good thing!

Geri

July 31, 2009

I enjoyed school. Sure I wasn't the best athlete but I tried and did the best I

could do. I have a friend with CMT too and he played HS football and baseball

wearing his AFOs. He never told the coach, he just wore tube socks that hid the

afo's and did his best. He told me he wouldn't give anything for the experiences

he had. Now he hunts and fishes, rides his 4 wheeler, and plays drums in a rock

band.

I'm afraid all of these special accommodations and equipment that some have been

seeking for their kids in school will just seperate their kids from their

friends and make them feel less of a student. Kids want to fit in. They want to

be like everyone else, not different with lots of special equipment or

limitations.

I'm sure these moms just want the best for their kids but sometimes its best to

let your kid be a kid. My orthotist has a saying, " the least brace is the best

brace " " . Maybe that applies to special equipment and programs too.

July 31, 2009

Hi there..

We have had an IEP for Gavin for several years and it has worked very

well. Under it they make accomodations for PE (he does his physio

then), fatigue during the day, scribing by an EA to save his writing

hand etc., extra set of books that stay at home.

It has come in usefull particularly in one year where we found a

teacher wasn't teaching to the IEP...she wanted him to do more

completion of exercises despite his being her top student in math in the class

(by her own admission). We were able to point to the phrase " work prorated so

long as student meets acceptable Provinical guidelines demonstrating

understanding of curricula "

He is consistently getting grades that are at or slightly above the provincial

standard...hence he doesn't need the additional work to grasp the material. It

was pointlessly tiring him out..after that meeting the fuss stopped.

Cheers

Sally

July 31, 2009

Hi Sally - thank you for sharing your experience in school with Gavin. I think

it's part of our job as parents of CMTers to help other parents become aware of

what their kids may go through in school and to share our experiences so that

they can help educate the faculty and staff.

August 1, 2009

Bob,

This story about your friend illustrates to me how important it is for parents

to be involved. Your friend was hiding his disability and in so doing, he was

taking a big risk with his safety and the safety of others. But thats the kind

of things kids do. It was very fortunate for him that he wasnot injured or that

he didn't injure someone else.

When I was in school, I wasns't so fortunate. While playing soccer in regular

PE, I had a serious knee injury. The injury changed the course of my life,

since it significantly limited what activities I could do from that point on and

it also set me up for a lifetime of pain. Of course, my parents didn't know I

had CMT at the time.

Ironically, however, I had just been placed in a full body scoliosis brace and

had the option of going into Adaptive PE, but didn't take it due to the desire

of both my parents and myself to remain mainstreamed. After the injury, I ended

up in adaptive PE class anyway for the rest of my school years, which is really

where I should have been from the beginning. If we hadn't placed such a high

premium on being normalI could have avoided this life-altering injury.

As for your concern that special accommodations will separate kids from their

friends, true friends really don't care. My friendships were maintained

throughout all my years of school, regardless of whether I was wearing a brace

or going to special PE classes or not. It made no difference to them and Ive

heard others here say the same thing. In addition, many of the special

accommodations being discussed aren't even visible to the other children.

Bob, I'm wondering if you are a parent yourself. Do you have children? I ask

because looking at this issue through the eyes of a parent is very different

than relating to it from the perspective of a child. Until a person is a

parent, he/she really cannot understand.

My own daughter is grown now and hopefully she doesn't have CMT, but when she

was in high school, she really struggled with PE class. She was very sensitive

to the heat and the sun. It would give her headaches and make her feel ill. She

and I had to work with the school to make sure that PE was her first class in

the morning. Although after awhile, even that became intolerable for her. Long

story short, as a result of this health issue as well as some life-threatening

bullying she was experiencing, she ended up in Independent Study for the last

couple of years of school.

Now, some individuals thought I was babying her too much. Others thought that

perhaps she was manipulating me to get out of going to school, but I simply

ignored the critics. What other people thought didn't matter.

The only thing that mattered to me was listening to my child's needs.

It is the parent's responsibility to be an advocate for their child and protect

them when it's needed. If the parent ignores their needs, who else is going to

listen? I would rather risk overprotecting my child thanÂ making a mistake that

causes her to suffer. In my view, if I was overprotecting her, the worst thing

that would happen is that she would know she was loved. If, on the other hand,

had I ignored or minimized her complaints, she may have suffered greatly and

perhaps even lost her life.

Like you said, kids don't want to be different, so if a child is asking for

help, then the parents are wise to listen and to take action. The risk of

inaction is far greater than action.

August 1, 2009

I wish that there were IEP's when I was a child. If accommodations were made I

would have blended in more. Never the less, my parents fought well for me.

August 1, 2009

,

I don't think he was hiding his disability at all. He shouldn't have to label

himself as disabled. He just did what he could as best as he could. That all

anyone can do. Whether you want to admit it or not you are being overprotective.

Sooner or later your kid will be out in the big bad world and have to live their

own life without mom making sure everything is ok. Kids want to be kids. Its

amazing they can work things out among themselves without mom remaking the rules

for them. Gretchen and many others in this group grew up the same way too. We

are not scarred from our childhoods due to mom not being there to make sure we

didn't fall or have some bad experience. I had AFOs. My parents made sure I went

to the dr and did what I was told to do, but then they let me grow up.

Bob

>

> Bob,

>

> This story about your friend illustrates to me how important it is for parents

to be involved.ï¿½ Your friend was hiding his disability and in so doing, he was

taking a big risk with his safety and the safety of others.ï¿½ But thats the

kind of things kids do. It was very fortunate for him that he wasnot injured or

that he didn't injure someone else.

>

> When I was in school, I wasns't so fortunate.ï¿½ While playing soccer in

regular PE, I had a serious knee injury.ï¿½ The injury changed the course of my

life, since it significantly limited what activities I could do from that point

on and it also set me up for a lifetime of pain.ï¿½ Of course, my parents didn't

know I had CMT at the time.

>

> Ironically, however, I had just been placed in a full body scoliosis brace and

had the option of going into Adaptive PE, but didn't take it due to the desire

of both my parents and myself to remain mainstreamed.ï¿½ After the injury, I

ended up in adaptive PE class anyway for the rest of my school years, which is

really where I should have been from the beginning.ï¿½ If we hadn't placed such

a high premium on being normalI could have avoided this life-altering injury.

ï¿½

>

> As for your concern that special accommodations will separate kids from their

friends, true friends really don't care. My friendships were maintained

throughout all my years of school, regardless of whether I was wearing a brace

or going to special PE classes or not. It made no difference to them and Ive

heard others here say the same thing.ï¿½ In addition, many of the special

accommodations being discussed aren't even visible to the other children.

>

> Bob, I'm wondering if you are a parent yourself. Do you have children? I ask

because looking at this issue through the eyes of a parent is very different

than relating to it from the perspective of a child.ï¿½ Until a person is a

parent, he/she really cannot understand.

> ï¿½

> My own daughter is grown now and hopefully she doesn't have CMT, but when she

was in high school, she really struggled with PE class.ï¿½ She was very

sensitive to the heat and theï¿½sun.ï¿½ It would give her headaches and make her

feel ill. She and I had to work with the school to make sure that PE was her

first class in the morning. Although after awhile, even that became intolerable

for her. Long story short, as a result of this health issue as well as some

life-threatening bullying she was experiencing, she ended up in Independent

Study for the last couple of years of school.

> ï¿½

> Now, some individuals thought I wasï¿½babying her too much.ï¿½ Others thought

that perhaps she was manipulating me to get out of going to school, but I simply

ignored the critics.ï¿½ What other people thought didn't matter.ï¿½

>

> The only thing that mattered to me was listening to my child's needs.

>

> Itï¿½is the parent's responsibility toï¿½be an advocate for their child and

protect them when it's needed.ï¿½ If the parent ignores their needs, who else is

going to listen?ï¿½ I would rather risk overprotecting my child thanÂ making a

mistake that causes her to suffer.ï¿½ In my view, if I was overprotecting her,

the worst thing that would happen is that she would know she was loved.ï¿½ If,

on the other hand, had I ignored or minimized her complaints, she may have

suffered greatly and perhaps even lost her life.

>

> Like you said, kids don't want to be different, so if a child is asking for

help, then the parents are wise to listen and to take action.ï¿½ The risk of

inaction is far greater than action.ï¿½

>

August 2, 2009

It would be impossible for any of my CMT kids to play football.

A: They can't run.

B: They don't have any balance.

C. They wear AFOs that prevent them from having a lot of movement in their feet.

D: Any coach would see the AFOs in the football uniform.

August 2, 2009

Bob,

You are completely wrong about my parenting skills. I was not overprotective.

I can say that because my daughter is now a well-adjusted, independent,

responsible 26 year woman, of whom I am very proud.

The part I think you may be missing is that I wasn't going out and proactively

childproofing the world so she never experienced anything bad. I was

simply believing her when she complained to me about things and taking the

appropriate parental action.

I'm not sure why you see your childhoold as so different. From what I've heard

your say parents were responsive to your needs, taking you to the doctor, get

you treated, etc. If you didn't need any help at school, that's great. Then

your parents acted appropriately.

There is a proper balance that all parents strive to achieve, allowing children

to experience the world while protecting them from unnecessary harm.

In my case, I was weaker than other kids and had a history of my kneecap

slipping out of place for many years. So, I really shouldn't have been putting

into regular PE when I got the brace. It was a recipe for disaster. Had my

parents known I had CMT, I'm sure they would have fully recognized the risk and

acted accordingly.

As for my daughter, it was important that I believe her. In certain situations,

when kids really believe something is a certain way, it can be psychologically

damaging for a parent to reject it. The issue is too complex to discuss in

detail here, but we need to trust that loving parents know their kids better

than anyone and are acting in their best interest.

I find it fascinating that people who don't even have children feel they are

qualified to give parental advice to others. I get it though. Before I had a

child, I used to look at parents and think they were doing it all wrong too.

But once you have a kid, you realize how much you really don't know.

From: robert cockerham <robert30@...>

Subject: Re: schools and accommodations

Date: Saturday, August 1, 2009, 12:31 PM