Re: need help with IEP for my child

[Guest guest]

& Jeannie,

My daughter may or may not start kindergarten this year, and I too have been

researching the IEP procedures from the state's school system website. It all is

confusing to me, but from what I get from it you have a meeting with all

teachers that have contact with your child and discuss limitation, what you want

done and those types of things and make the IEP together.... is that right? I

definately understand what your saying about people not understanding the

disabilities since they are perfectly normal looking children.

I am so worried about PE and teachers being inconsiderate and degrading because

of limitations. The other top worry is with my daughter hand strength and her

balance, will she be able to carry her lunch tray? I can't believe how fast time

has flown and how terrifying this is for me.

[Guest guest]

Jeannie,

I wish I could help with your IEP questions as my son does have an IEP but that

is due to his autism. He does not have CMT so you will have different needs

then we do. My suggestion is not only find out what he is having problems with

but have him evaluated for OT as I believe that will be important to anyone with

physical difficulties. As for being tired all the time you can probably write

in an alternate PE program in the IEP based on your childs skills and as for

writing you can also write in for either less classwork/homework as to what he

can handle or possibly even get typing/computer printing on it instead of

writing as that should also solve the problem of tired hands. Good luck with

this and if there is anything I can do to help please let me know as we've been

doing IEPs for my son's autism for 4 years now so have a pretty good handle on

what you can and cannot add in.

In addition to all this make sure to have your child evaluted by the school or

get a Drs note saying what accomendations need to be made for him to be

successful. This goes for everything you want on the IEP, don't let the school

bully you and tell you that they don't have the funds or sources to do what you

need, it's the law that they must do what is needed (not always what you want)

in order to make sure he can do his school work and succeed.

Ron

[Guest guest]

My son has an IEP because he has CMT and dyslexia. My CMT daughter has a 504

plan.

I was a complete worried wreck when Adam was starting school. I was afraid he

would get left behind in line, worried he couldn't get up off the floor, worried

if he could stand in line for lunch, would he be able to get the doors open,

would he be ridiculed during P. E? You get the picture.

An IEP plan is an education plan that you come up with along with your team.

A team is made up of the parents, teachers, principal , school nurse, school

psycholosit, etc. I never sign the IEP or 504 plan unless I agree 100% with what

it says.

I never let the team question any part of CMT. I just won't let them argue with

what we live with. Only 1 year was it ever a problem. We had a strange school

nurse that insisted Adam take part in regular PE. Anyway I have added to

IEP over the years to fit his grade and correct certain issues.

Adam has a front of the line lunch pass, he is graded on quality of work not

quantity, he has a late pass that he keeps with his school I.D, on cold days he

is aloud to sit in a classroom to keep warm, his class needs to be closer to the

office not farther, he can take short cuts when walking across the campus, he

has a set of books for home so he doesn't have to carry a bunch of stuff around

etc.

One of my favorite modification is that I have 1 person that I

can talk to. I don't have to call a million people. One contact person and she

takes care of the rest. This is a new modification for this year in high school.

The front of the line pass doesn't always work. In first grade a lunch lady

called him a liar and sent him to the back of the line. He told her he had a

medical problem and that she was embarrassing him. She felt so bad she called

me to apologize. She also bought him an ice cream.

Anyway modifications do work! Adam has gone pretty smoothly through school. We

have had some bad years but for the most part we learned what worked and what

didn't work and he is a happy very well adjusted freshmen.

Again modifications do work and most teachers are more then happy to help. At

least in my experience.

If you have any question please ask.

[Guest guest]

Hi,

I've been reading about the problems dealing with schools. It can be

frustrating and confusing. I was a special education teacher and gave

it up to start providing advocacy. It's really difficult if your

child has an invisible disability to get people to understand.

My first suggestion would be to put everything in writing. If how your child

performs academically is not affected, but things like

participating in PE and carrying trays are difficult, you might want

to ask for a 504 plan. This is like an IEP but is more geared towards

modifications of the school environment. It makes it a mandate and

legal contract for the school to follow through on what the child

needs.

A first step might be to write a letter to the principal to ask for a 504

meeting. The decision to create a 504 plan is not up to one individual, but is

decided on by a team, which ideally includes the parents. The school might

suggest creating an Individual Health

Plan. This is good, but in my humble opinion should be written as

part of the 504 plan (again for the added legal protection and

obligation of the school district.

A good sight to look at would be wwww.wrightslaw.org. They provide

advice and also have samples of letters to schools requesting

services.

Good Luck,

[Guest guest]

I hated school, every single day, it was a nightmare for me as well as for my

dad who also had CMT. I hope things have changed for disabled kids today. If I

had a choice wouldn't care to go back an find out. I'm very bitter about my

school days, I can't describe how awful it was for me. I had no one that would

help me in my defense and understanding of my disability. When it came to

school I was on my own to fight the battles and bullies and teachers that didn't

get it! I should have been home schooled! Perhaps I would have learned

something!!!

Geri in Minnesota

[Guest guest]

Hi,

It's been awhile since I've posted anything but if anyone has any IEP

questions email me, not that I'm an expert but I've been through quite enough

of

them to know some things. My email is _Shane71591@..._

(mailto:Shane71591@...) . I have 2 boys with CMT, one in high school and

one in elementary.

So, ask away, I'll help as much as I can.

Dawn Groothoff

Pinellas Park, FL.

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I would suggest a 504 which covers physical disabilites. I was told

we could not have an IEP for my son because he did not need special

education, basically his intelect was not an issue. My son was

diagnosed in Sept 2006, he is now in 9th grade. It took a year to

work everything out with the school and it was a long road.

We still have problems and I have come to the realization that it will probably

never get better. I requested the 504 and administration agreed. I brought

copies of all of Ethan's medical records, letters from his doctor and physical

therapist. He has to use a lap top because his hands are weak, I had to

purchase the laptop as well as jump drives to use to exchange information with

his teachers.

He gets extra time to walk from class to class (4 extra minutes!), he is

supposed to have a locker with a key lock instead of the dial but

this has never happened, he does not have to change for gym because

of his AFOs and he is able to tell the gym teacher what he can and

can not do. He is also supposed to have extra time for tests,

homework etc do to fatigue and he is supposed to be given notes (some

teachers don't have notes so he doesn't get any in those classes).

We always have problems with the gym teachers trying to push him,

last year they made him run the mile and he ended up in bed for 3

days. This year, Ethan had to tell the teacher that he didn't need

to change for a months before it sunk in and then the teacher asked

why each time in front of the entire class then he said well I still

think you could change.

I told the teacher if he wanted to put Ethan's shoes on and tie them then we

would think about it- he stopped after that.

The latest was a letter I received in the mail stating that he needs a doctor's

note if he is going to miss anymore school and that if there is a reason he is

missing school to let them know. I told them that had they looked in his file

they would have know the reason. He has missed 14 days this year. I could

continue to tell you stories but I fear I will write a book. Feel free to email

me is you would like more info.

Stay Strong,

[Guest guest]

Hi,

My son started school in Kindergarten Suffolk, NY in Sept and has CMT1A he has

an IEP. PT 1:1 2 times a week and OT in group of 3 also 2 times a week. I met

with the therapist prior to them starting and gave them info and explained as

much as I could.

The school has a lot of stairs and my son struggles on stairs so this scared

them when I stressed my concerns in the meeting. The height of the school bus

was also an issue.

In the first week of school I recieved notes from the school nurse that my son

had fallen over in the rush getting off the bus they took the inititive and have

him taken off the bus now by an aid first and walked in with the walkers.

I was happy with how they have handled everything as I could no longer be in

control which is what you are also concerned about and he wants to be part of

the crowd.

PE is interesting at this age it sounds like they have lots of fun. My son is

very weak but he also has strength and determination that he can do things and

keeps on trying. Other kids are the meanest but that can happen CMT or not and

can happen everywhere I witness it a lot in the playground where they want to

play tag with my son because they know he will never catch them. He does not

care.

My school district has a strong Special Education PTA (SEPTA) and they have a

group coffee where you sit with other parents and voice your concerns this is

great and you no longer feel alone I met with the head of SEPTA prior to my IEP

meeting and got some great ideas how how to word your needs and to learn about

who is going to be present.

I know exactly how you are feeling I was feeling the same way but he is now

doing amazing and from being with so many other kids with all sorts of

limitations and talents. I have learnt to let go a lot.

Hope this gives you some relief and if you like I can let you know what type of

things we have on his IEP. We also get summer services so that we have no

regression.

[Guest guest]

Hi,

I started noticing something was different w/ my daughter when she was 1 and a

half. No one was willing to consider what I saw - so I realized I had to be the

advocate on her behalf. She is now 13 and has an IEP that has followed her for

the last five years. It is not scary and it is so helpful.

There are still times when a teacher is highly insensitive and last year I had

to sit down with all of her teachers as well as the principal and nurse and

explain in detail what the problems were - they truly appreciated the

information and have since worked hard at making my daughters schooling

enjoyable and do-able.

Be your daughters advocate all the time - but remembering that many of us are

ignorant as there are so many different problems (disorders, diseases) out there

and we can't truly keep up on it all. (It is so much easier to teach one way

and wish that everyone fit into that one category. Unfortunately, or

fortuantely, we don't all fit one size)

Gentleness and a willingness to advocate will be your best strengths in seeing

your daughter through her years. Just be careful too that it isn't used as a

crutch - knowing the balance of what is impossible and what is just " not wanting

to " will be your responsibility to help your daughter figure out.

Best to you.

Ann

[Guest guest]

-

My son's IEP had provisions for occupational & physical therapy and

modifications in the classroom, and counseling -ie a floor sitter for

support when they sit on the floor, etc. OT covered things like

writting and his grip, tying shoe laces, etc. PT was for strengthening

and endurance exercises.

It helped that we had some outside evaluations and doctor's

recommendations.

I'm not really sure what the difference between an IEP and a 504 plan

is, I'd be curious to hear from others who have gone through this

process.

Hope this helps,

Jim

[Guest guest]

A 504 plan would be modifications that can be made for the classroom and school

campus. The IEP usually has something to do with the resource class/special

education. I have a son with ADD he has a 504. My CMT daughter has a 504 and my

CMT dyslexic son has an IEP. He needs a lot more help and a lot more

modifications than the other kids.

Here is So CA we don't offer PT in the schools so I am not sure what plan PT

would fall under. I do this little trick where I basically write an IEP inside

the 504 plan.

[Guest guest]

Hello, I teach at a public charter school in California. I have

helped students receive modifications and qualify for services

through the schools. I am not a special ed teacher, though, so this

is my perspective on the 504/IEP. The IEP is an individualized

educuation plan. For students to qualify, they need something that

challenges their ability to learn in a mainstream classroom. They

need to demonstrate a fairly significant discrepency in order to

recieve services. The plan includes yearly goals that the school and

support services work towards. These are usually academic goals.

The school is required to meet the goals and fund the

tutoring/resource help, etc. to make the goals attainable.

Physical challenges are tough for schools because many schools do not

have an OT on staff and it is difficult to measure progress with

hidden disabilities. Unless academics are affected, it may be

difficult to get an IEP.

The 504 is a more flexible plan that outlines modifications for a

student. I encourage families with students that have challenges to

ask for a 504 because it provides a foundation for the teachers in

years to follow. I have not been to many 504 meetings, but I know

that teachers are required to know about all 504s in their class and

make the necessary modifications. As far as I know, the 504 does not

have the targeted goals and interventions of the IEP. The 504 also

does not require the school fund all of the modifications (such as a

laptop).

As a teacher, I have worked with students challenged with autism to

sensory integration dysfunction to dyslexia. I really appreciate

when parents approach me early with advice/history and successful

strategies for their students. Written information, like a page of

typical behaviors, frustrations, etc. help a lot.

Best wishes!

Lenka

[Guest guest]

Hi Geri here...

I got so mad when I read about your school and what your child is going through!

I'm in my 60s and I see things have not changed very much.

That's all I got was 4 min extra to get to class...if I didn't make it I got

detentions ... and I many of them! My walk home was three miles...I had blisters

on my feet that were bleeding by the time I got home.

I needed to defend myself some how...I said " if you are going to give me a

detention for just being late for class then you'll have to find me a ride

home...or I just be here till morning! I had started to become rebellious!

Gym class was a nightmare for me...why do they have to put kids down every

chance they get?

Teachers had fun drawing negatives towards me in front of others of

course!!!...is it any wonder I was bullied so?

How about your son, is he bullied and worried about telling you??...it kind of a

chicken thing to do when your a teen

ya know! Esp. a guy!!

The bus...I had to get on one knee to get up ...then had to pull hard with one

arm because I had loads of books to hang on too. I looked real nice by the time

I got to school esp. if it was a muddy rainy day or snowing.If I had time I

would wash up at school..but sometimes I couldn't as it might take longer then

the 4min.I was allowed!!

I also could write a book....there is so much more! Public school ruined my

life!! I did end up having home schooling but that's another story...it was also

one of the best days of my life...at last I excelled in everything with straight

A's How wonderful it was to know that I wouldn't be going back to a place that

sickened me each and every day!! For nine years!!!

Geri

[Guest guest]

We all want and have a need to be part of a crowd ...part of something!..but not

to be of feel less then others! Or others acting as though we are.

Having fun or taking advantage of our disability so that they can win or have

fun at our expense...is sad and not fun for us! Some will do what it takes to be

part of a crowd..after all who wants to be a cry baby, and we all need friends

no matter what! Do you know what it's like never to win? Never to be 1st,2nd,

but always last? Never to be picked?

I kept trying and trying also .....then I got tired! No doubt about it ...kids

with a disabilitys get picked on, bullied more severe then others..ask me! They

want to play tag with your son because they know your son will " never " catch

them and your son don't care! Amazing!!! One day he will...I promise. How old is

you son?? He sounds very brave...but for me it's very sad...because I've been

there.

Geri

[Guest guest]

Hi ,

His IEP includes PT and OT once a week in school (it is school based PT and OT,

such as how to climb stairs better, balance a lunch tray etc) modifications in

gym class if needed, but so far in third grade it really has not been needed.

Also misc. things such as if the class is sitting on the floor he is able to sit

in a chair, longer time to allow the class to get to music, library etc. Some

of these things may seem silly but are necessary for him. It took us 2 years for

the school to finally agree to an IEP. He had a 504 in place for first grade but

it did not work. A 504, I believe, is not monitored by the state like an IEP is

so they are not followed as closely.

Jeannie

[Guest guest]

Geri,

I completely understand the feeling. No way would I go to my 20 year reunion

this past summer! If my son ever starts to show any signs of CMT, I'll probably

homeschool him. I've been considering it anyway for other reasons!

Dawn