Tomorrow's IEP meeting (long)

December 16, 2001

Dear Phyllis,

You've just done everyone on this list a huge favor. Just walking

everyone through the whole maze in one message is so helpful. I can't believe

how lucky the world is to have people like you, who take on the system in an

organized, thoughtful manner and end up changing things for the better.

One quick thought though - I was surprised to read that the parents

of gifted kids in your district have no complaints. As the mother of a

profoundly gifted kid I can assure you that the problems are just as

intractable and nasty for these kids, only people are even less willing to

hear about it. Not to get up on MY soapbox, but this is a huge issue. My

daughter's OCD issues pale in comparison to what I deal with in my son's

life. Teachers can kind of put her in a " box " - she's a bit off, but

basically can learn like the rest of them (obviously her OCD is not a huge

problem at school and she doesn't have many additional problems), but no one

wants to deal with highly gifted kids and the prevailing idea is that they

will just do fine - they don't need special services. People are sympathetic

about my daughter's needs but they think I have some inflated idea about my

son and that I am " bragging " . In fact, I would give anything to have more

" average " kids. At least school would be something other than torture.

Anyway, this is a big topic and I'm NOT trying to open a can of

worms. I would just hate to think that your amazing, wonderful advocacy will

not extend to gifted kids in your district. Sometimes it's helpful to

remember that a kid with an I.Q. of 160 is as different from an average child

(whatever that is) as a profoundly retarded child with an I.Q. of 40, and

those children aren't expected to attend regular school for 18 years.

Enough. Shut up . I have a meeting about my son's education tomorrow, so

that's the mode I'm in.

Kudos to you Phyllis. You're amazing.

Good luck tomorrow!

December 16, 2001

Good Morning Everyone,

I have an IEP meeting for my daughter, Chelle, tomorrow morning. Chelle has

been diagnosed with TS, ADHD, moderate to severe OCD, Depression, and ODD. She

also has other difficulties such as a math learning disability, skin picking,

trichotillomania, and she totally lacks executive function skills.

From what I'm reading on these lists, there are a lot of new parents who have

children who have recently been diagnosed with either TS or OCD or both and/or

other disorders. I'm writing this for those of you who don't know about the

educational services that your child is entitled to from your local school

district so that you can gain some insight about your child's rights. Children

with those disorders qualify for special education services under the " Other

Health Impaired " category. I'm also writing it to help clarify my thoughts and

get my ideas gathered together. I don't profess to be an expert; I'm learning

as I'm going.

An IEP, or Individual Education Plan, is what children with special needs get by

federal and state mandate to assure they receive a free, appropriate public

education, known as a FAPE. The IEP is a legal, binding contract between the

school district and the parent for appropriate educational services for the

child. These services can start at pre-school level and are called Early

Intervention Services.

Tomorrow's meeting, an IEP meeting, is so very important because my

almost-sixteen-year-old daughter, Chelle, is going back to the public school

after 2 1/2 years in a much smaller alternative school. She will be going from

a school of 50 students to one with 1,100 students. Needless to say, we both

are anxious about this. Because of her disorders, she needs a lot of special

support in school which she has not really been getting. Also, as a typical

teenager, she doesn't want to be known as needing special services. What a

conundrum this is! I'm trying to balance my daughter's educational needs

against her emotional needs.

We had a meeting in October, and the school district hadn't even done the

educational testing on my daughter to determine where her current educational

levels are, what her learning style is, and what kinds of behavior modifications

need to be implemented. We refused to accept the plan and granted permission to

implement it for 30 school days while they completed the testing.

Since that meeting, I contacted the executive director of the PA-Tourette

Syndrome Association, and we are extremely fortunate in having her coming to the

meeting as Chelle's advocate. If anyone knows what my kid needs, she does. She

has been advocating for TS kids for more than 20 years.

Needless to say, I'm looking forward to the meeting with much anticipation,

stress, and anxiety. Most school districts traditionally try to fit special

education students into their own frameworks of education and do so whenever

they can. The " I " in IEP stands for " Individual " and that is what I will have

to remind them when planning my daughters Education Plan. Because of the school

district's attitude, I feel as though too much responsibility is placed on my

shoulders to assure that her appropriate educational and emotional needs are met

in school. They say that we are a team, that we are both working in the

child's best interest, but the truth of the matter is that most of the time

parents have to fight to get what their children need. Sometimes, and I know

parents who have done this, they have to sue the school district to get the

appropriate educational services that their children are entitled to under

federal and state laws.

As a person with disabilities, my daughter is protected by the Americans with

Disabilities Act. I have already decided that once we have the new IEP in

place, any violation by the school district will be reported to the state board

of education; any violation of her civil rights -which includes teasing or

harassment because of her disabilities - will be reported to the PA Human

Relations Commission. I am no longer going to tolerate the school district not

meeting their obligations to my daughter, educationally and emotionally.

A couple of really good things have come about because of my dissatisfaction

with the results of the last IEP meeting. The first is the formation of a

support group for parents of special education students in our school district.

For a long time I felt there was a need for such a group. The school district

got me so distressed and upset at their lack of preparation, that I started one.

They just pushed me to action.

Every parent that I have spoken to whose child has special needs, except those

of gifted children, have expressed dissatisfaction either with the services

their child receives or the process involved in securing them. I have several

recruits already, and we are having our first meeting on January 9, 2000. A

meeting announcement will be in our local paper in their 'Community Calendar'

section. Flyers announcing the meeting are going to be distributed to stores,

businesses, doctor's offices, and churches the week after Christmas. We are on

line with Groups and ready to unite to assure that the special children of

this school district receive the appropriate education that they are entitled to

and deserve.

The other good things that came of it are my searching and finding an advocate

experienced in TS, and, through her, I was able to locate an excellent

psychiatrist who specializes in child and adolescent psychiatry, one with vast

experience with Tourette Syndrome. For the past 2 1/2 years, I have had

Chelle's neurologist managing her medications because I have had such poor

experiences with psychiatrists and therapists who don't understand my daughter's

disorders. I've had a couple of phone conversations with him, and I think I

have finally found someone I can trust and have confidence in (beside her

neurologist) to take care of my daughter's medical needs. Chelle has an

appointment with the new psychiatrist this Tuesday morning! I have always known

there is a silver lining behind the dark clouds, and once again it has been

proven to me.

OK- I'm putting my soapbox away for today. Thanks for listening. That made me

feel better and got me focused for the day's work of finishing my preparations

for the meeting. I have to take copies of some of the paperwork to the advocate

this evening so she has time to review Chelle's records and reports prior to the

meeting tomorrow morning. I hope that it served my purpose of educating the

new members a little bit. Wish me luck!

Progress, not perfection

Phyllis

ppepe40@...

December 16, 2001

Hi ,

.. . .I was surprised to read that the parents of gifted kids in your district

have no complaints. As the mother of a profoundly gifted kid I can assure you

that the problems are just as intractable and nasty for these kids, only people

are even less willing to hear about it. . . but no one wants to deal with highly

gifted kids and the prevailing idea is that they will just do fine - they don't

need special services.

Oh, no . I'm sure there are some of those parents who have complaints, I

just meant the parents of gifted students THAT I SPOKE TO did not have any

complaints about the process or what services their children are receiving. Our

school district may be rather unique in that they favor the gifted students over

other special ed kids. They seek these kids out early in the elementary

schools, parents rarely have to take the initiative to have them classified,

they are put in advanced classes, etc. They cost the district very little in

extra funds compared to a child in a wheelchair, or one who is profoundly deaf,

or blind, or severely retarded, etc. Those types of disabilities cost big bucks

for special schools, aides, smaller classes, and extra transportation. Most of

the gifted kids ride the same bus that regular kids do and go the same schools.

The service that they receive is usually internal in their individual school

buildings.

The school district looks upon the gifted children as an asset, which they are,

because the gifted kids boost all the averages in the statistics that schools

use to show how good they are. Gifted kids are good publicity because they make

the papers with their accomplishments all the time around here. I applaud that

they are recognized the way they are. The sad thing is that our s.d. is not as

aggressive in identifying and providing services for the other kids, the ones

who won't go on to prestigious colleges and won't make the papers.

The director of pupil services, as soon as I told him that Chelle would be going

to the public high school rather than an approved private school, started to

tell me what they could NOT do for her. Didn't say that it would be a challenge

to meet her needs, but they would try their best. Just started in on what they

could NOT do. Of course, I didn't pay any attention to him. The school

district will meet her needs whether he wants to or not. Remember, the " I " in

IEP stands for " Individual, " and that's what Chelle's IEP will be - tailor made

for her. I'm really optimistic, aren't I?

I would just hate to think that your amazing, wonderful advocacy will not extend

to gifted kids in your district.

Perhaps I said it wrong, or perhaps you misunderstood, but the gifted kid's

parents are not excluded at all. As a matter of fact, I specifically sought out

and recruited one of the parents of a gifted student because I know she is an

activist in our community and will be an exceptional addition to our group.

I know first hand what you are speaking of. I have a son who's IQ was in the

high 170's in school. The school did not meet his needs and he never graduated

from high school. Ten years out of high school, he owned his own business, now

has several employees, has made a lot of money, spends and saves it wisely, and

has gone way beyond the school that wanted him to fit in their little box. He's

an exceptional young man.

Thank you for the encouragement, and good luck to you too . I'll let you

all know how things turn out.

Progress, not perfection

Phyllis

ppepe40@...

December 16, 2001

HI Phyllis:

Thanks for sharing your tremendous story. What a wonderful

initiative to get SE parents together involved in mutual support.

YOu are right, you are on the team, but only because the law says

so. It is best for us to have no illusions about sharing the same

interests about our kids' educations. Being realistic about this

can save many tears along the way.

Please keep us posted on progress, take care, aloha, kathy (h)

kathyh@...

> Good Morning Everyone,

>

> I have an IEP meeting for my daughter, Chelle, tomorrow morning.

Chelle has been diagnosed with TS, ADHD, moderate to severe OCD,

Depression, and ODD. She also has other difficulties such as a math

learning disability, skin picking, trichotillomania, and she totally

lacks executive function skills.

>

> From what I'm reading on these lists, there are a lot of new parents

who have children who have recently been diagnosed with either TS or

OCD or both and/or other disorders. I'm writing this for those of you

who don't know about the educational services that your child is

entitled to from your local school district so that you can gain some

insight about your child's rights. Children with those disorders

qualify for special education services under the " Other Health

Impaired " category. I'm also writing it to help clarify my thoughts

and get my ideas gathered together. I don't profess to be an expert;

I'm learning as I'm going.

>

> An IEP, or Individual Education Plan, is what children with special

needs get by federal and state mandate to assure they receive a free,

appropriate public education, known as a FAPE. The IEP is a legal,

binding contract between the school district and the parent for

appropriate educational services for the child. These services can

start at pre-school level and are called Early Intervention Services.

>

> Tomorrow's meeting, an IEP meeting, is so very important because my

almost-sixteen-year-old daughter, Chelle, is going back to the public

school after 2 1/2 years in a much smaller alternative school. She

will be going from a school of 50 students to one with 1,100 students.

Needless to say, we both are anxious about this. Because of her

disorders, she needs a lot of special support in school which she has

not really been getting. Also, as a typical teenager, she doesn't

want to be known as needing special services. What a conundrum this

is! I'm trying to balance my daughter's educational needs against her

emotional needs.

>

> We had a meeting in October, and the school district hadn't even

done the educational testing on my daughter to determine where her

current educational levels are, what her learning style is, and what

kinds of behavior modifications need to be implemented. We refused to

accept the plan and granted permission to implement it for 30 school

days while they completed the testing.

>

> Since that meeting, I contacted the executive director of the

PA-Tourette Syndrome Association, and we are extremely fortunate in

having her coming to the meeting as Chelle's advocate. If anyone

knows what my kid needs, she does. She has been advocating for TS

kids for more than 20 years.

>

> Needless to say, I'm looking forward to the meeting with much

anticipation, stress, and anxiety. Most school districts

traditionally try to fit special education students into their own

frameworks of education and do so whenever they can. The " I " in IEP

stands for " Individual " and that is what I will have to remind them

when planning my daughters Education Plan. Because of the school

district's attitude, I feel as though too much responsibility is

placed on my shoulders to assure that her appropriate educational and

emotional needs are met in school. They say that we are a team, that

we are both working in the child's best interest, but the truth of the

matter is that most of the time parents have to fight to get what

their children need. Sometimes, and I know parents who have done

this, they have to sue the school district to get the appropriate

educational services that their children are entitled to under federal

and state laws.

>

> As a person with disabilities, my daughter is protected by the

Americans with Disabilities Act. I have already decided that once we

have the new IEP in place, any violation by the school district will

be reported to the state board of education; any violation of her

civil rights -which includes teasing or harassment because of her

disabilities - will be reported to the PA Human Relations Commission.

I am no longer going to tolerate the school district not meeting

their obligations to my daughter, educationally and emotionally.

>

> A couple of really good things have come about because of my

dissatisfaction with the results of the last IEP meeting. The first

is the formation of a support group for parents of special education

students in our school district. For a long time I felt there was a

need for such a group. The school district got me so distressed and

upset at their lack of preparation, that I started one. They just

pushed me to action.

>

> Every parent that I have spoken to whose child has special needs,

except those of gifted children, have expressed dissatisfaction either

with the services their child receives or the process involved in

securing them. I have several recruits already, and we are having our

first meeting on January 9, 2000. A meeting announcement will be in

our local paper in their 'Community Calendar' section. Flyers

announcing the meeting are going to be distributed to stores,

businesses, doctor's offices, and churches the week after Christmas.

We are on line with Yahoo!Groups and ready to unite to assure that the

special children of this school district receive the appropriate

education that they are entitled to and deserve.

>

> The other good things that came of it are my searching and finding

an advocate experienced in TS, and, through her, I was able to locate

an excellent psychiatrist who specializes in child and adolescent

psychiatry, one with vast experience with Tourette Syndrome. For the

past 2 1/2 years, I have had Chelle's neurologist managing her

medications because I have had such poor experiences with

psychiatrists and therapists who don't understand my daughter's

disorders. I've had a couple of phone conversations with him, and I

think I have finally found someone I can trust and have confidence in

(beside her neurologist) to take care of my daughter's medical needs.

Chelle has an appointment with the new psychiatrist this Tuesday

morning! I have always known there is a silver lining behind the dark

clouds, and once again it has been proven to me.

>

> OK- I'm putting my soapbox away for today. Thanks for listening.

That made me feel better and got me focused for the day's work of

finishing my preparations for the meeting. I have to take copies of

some of the paperwork to the advocate this evening so she has time to

review Chelle's records and reports prior to the meeting tomorrow

morning. I hope that it served my purpose of educating the new

members a little bit. Wish me luck!

>

> Progress, not perfection

> Phyllis

> ppepe40@n...

December 16, 2001