PLEASE HELP ME

December 2, 2004

HI dear

Do you live in Louisville KY?

I live in LouisvilleMy son 3 late talker

We could meet and talk Let me know

Lana,Preston mom

December 2, 2004

It just gets to me when somebody posts " please help me " because my

first post for Tanner was " Help for Tanner " and I know how desperate

you have to feel to beg for help from an online support group not

knowing where else to turn. Well you are in luck because getting

children with severe multifaceted communication impairments like

apraxia in a hearing impaired school/program through " out of

district placement " which means paid for by the public school, is

something that became the norm after my son Tanner -at least in NJ, at both The

Summit Speech

School as well as through Mountain Lakes. Of all the children I

know that went to Summit Speech School with Tanner -all are doing

amazing in school today. Out of those in the mainstream...well we

know the stats. Of course as the public schools got/get up to speed

(which was/is cost effective for them to do so) on appropriate

therapies/teaching for children with severe multifaceted

communication impairments like apraxia -more and more children are

being school successfully in the school's preschool disabled

program, and beyond.

To me there is a great difference between preschool placement and

kindergarten and beyond placement. A child is entitled to be

schooled in " the least restrictive environment " which to me means

the mainstream. At least try that placement and give the benefit of

the doubt they not only can " make it " but like my son Tanner and may

others -can rise to be one of the top students.

http://www.cherab.org/information/familiesrelate/letter.html

Here are two archives to help:

About the classification of MR. Since I don't know Kayla's history

and she is now 6 it's hard to know if this is inaccurate. I do

believe in parent gut reaction -so my guess is that Kayla has severe

apraxia of both speech and body, and has yet to receive appropriate

services and due to receptive and/or cognitive testing which becomes

more and more verbal based as a child ages in comparison to

preschool years testing -she is testing as MR today. In addition, a

child with motor apraxia of the body will not test accurately on

many nonverbal tests. Some children like my son Tanner can have

mild motor planning deficits of the body and still test high on

nonverbal tests, it really depends. In some cases the child's

receptive ability and IQ is viewed to increase 'coincidentally' in

direct correlation to their motor planning ability skils improving.

I myself did not use my own views of Tanner to advocate for him in

school to get him out of inappropriate placement in his preschool

through the town school. Yes of course my husband Glenn and I let

them know what we saw in Tanner, but understand that I knew that

they would view most that I said about Tanner as a " parent in

denial " if they viewed him as anything different than us. So when

Tanner was three and they wrote in his IEP that he was manipulative

and would speak more as his self esteem " increased greatly " , and

when the preschool teacher told me " you have to forget this apraxia

thing and treat Tanner like a normal child " and the lack of any

mention of motor planning, DSI, hypotonia in his IEP -it read like

they viewed Tanner as an elective mute with psychological problems -

and from feedback -due to possible emotional abuse from us! Just

like you, my husband Glenn and I were of course horrified by this,

and didn't agree one bit, and didn't sign the IEP -neither of us

did. They lied -it does matter if you sign it.

Tanner always had an incredible self esteem, and he was far from

manipulative. Tanner as most of you now know from The Late Talker

had not a clue he had apraxia -we treated him like any other child -

and acted like it was normal to go to speech therapy because after

all " everybody learns to talk " All Tanner's private therapists

described Tanner as " so sweet " In fact Tanner's Early Intervention

therapist Zimet CCC SLP who now works with EI in Georgia was

just as horrified as us at what went on. loved Tanner.

is still a special person in our lives -and is part of this

group. She may not read every email however so I'll have to

remember to call or email her for input.

So just want you to know Kathy that it's expected to be emotional

and upset, and even outraged! -and OK to cry, but that's not the

face you want to show the school -you need to show you are not just

an emotional parent. You also need a plan.

My brother is a partner in a law firm -and he advised us to separate

emotions from facts. I'll let you know what we did and fill in

Kayla's name instead. Create a paper trail, write down Kayla's

history up till now and each event that happens now, phonecalls with

date and time and who you spoke with, letters or emails. Hard copy

every conversation by following up with a fax, email or letter.

Secure documentation to support an accurate diagnosis and placement

for Kayla.

We had signed a report to get Tanner into the preschool summer

program, he turned 3 June 11th -and somehow that became his IEP that

fall even though it's all questionable how that even happened if you

check the paperwork. What we then did however is request a meeting

to immediatly reopen Tanner's IEP based on " change in diagnosis " and

state we didn't agree with is current placement due to documentation.

For Tanner, as upset as I was my brother (the lawyer) said

something that I really enjoyed to pass on " Actually based on their

own IEP which so greatly deviates from documentation and history

about Tanner through Early Intervention and his private therapists

and doctors reports -they in their own writing have proven that

their own program is in fact so highly detrimental to Tanner that he

regressed substantially within two weeks in it and needs to be

removed from this environment and placement immediately. "

Each time something inappropriate happened at school -like when they

punished Tanner for not doing something he did the day before and

blamed it on him being " manipulative " and let him sit on the floor

and cry for hours (!) and ignore him -I would take Tanner to another

neuromedical doctor for his or her views and present that instead of

our own outrage.

I didn't stop with just an evaluation from Dr. Agin at that time

because back then I felt like we were drowning, Tanner was drowning -

and didn't know how to save him. Tanner went to see a slew of

doctors and therapists -each writing up reports. If in fact Tanner

was MR or autistic or an elective mute we would have loved him just

the same, so we wanted to know for sure what the reasons were for

Tanner's lack of speech, etc. for reasons outside of his school

IEP. We wanted to know how best to help him. In fact each report

came back the same -that Tanner's placement and classification was

inappropriate, punishing an apraxic child for something that may be

beyond their abilities is inappropriate, and that Tanner was an

intelligent child with a severe to profound motor planning disorder

both verbal and oral, with mild global hypotonia and sensory

integration dysfunction. We used the professional reports to

advocate for Tanner's therapy and placement. I recommend the same

for Kayla. Then you are no longer presenting your opinion of Kayla,

you are presenting reports from various professionals on what their

professional views are on appropriate diagnosis and treatment.

For us, the approach we did for Tanner secured out of district

placement for Tanner's preschool years at The Summit Speech School

for the hearing impaired and deaf. The most awesome school you

could imagine for an apraxic child. Tanner was not the only apraxic

child that thrived there and then transitioned into a mainstream

kindergarten class at six. (because the school went up to six -and

for hearing impaired children they already appreciate the benefit of

the additional year developmentally for a child with an impairment -

they set up the children for success by keeping them in preschool

until 6. Most with speech impaired children don't appreciate this

concept yet)

From: " kiddietalk " <kiddietalk@...>

Date: Thu Jan 22, 2004 10:05 pm

Subject: Re: hearing impaired class for apraxics??

Hi Toni,

As you probably already know I believe these type of schools for

apraxic children are incredible. And yes Tanner went to one during

preschool and is not hearing impaired at all -and is now in a

mainstream academically advanced first grade class with straight A's

(still!) and he is both Mr. Social and Mr. Cool. Even though Tanner

doesn't have any hearing impairment at all, if he still has a

noticeable speech impairment when he " grows up " and society is still

as lame as it is now about verbal disabilities and how they judge

those who have even minor impairments of speech as cognitively

inferior -I've joked I'm going to buy Tanner some hearing aids he

can wear when he doesn't feel like being judged! (or he can borrow

his cousin's who is hearing impaired and has a speech impairment)

Here is an archive:

" Mild hearing loss in a child however is different. Ability to hear

is critically important while speech is still developing. My nephew

also attended the Summit Speech School in New Providence, NJ

http://www.oraldeafed.org/schools/summit/ where my son Tanner went.

Even though Tanner and many of the other apraxic children in the

school had normal hearing -all of our children were schooled with

professionals who were fully aware of the proper way to educate and

provide therapy to a child with the duel diagnosis (which is not

uncommon) of speech problem/hearing loss. Lots of multisensory

approaches. Hence the base for The Association Method School.

http://www.usm.edu/dubard/associat.html

As I posted here when I posted one of my first emails -I first

thought of this type of schooling for Tanner within days of his

diagnosis (and at the time was shot down by this one parent who at

the time ran the only grouplist for apraxia who also tried to shoot

me down on EFAs and the importance of neuromedical MDs) As it ended

up a few years after Tanner and many others in our group in NJ

started to succeed in the Summit Speech School -and the Lakedrive

School http://www.mtlakes.org/ld/ , Dr. Joan Sheppard from Columbia

University

http://www.cherab.org/news/meetings/eventsmay2001.html did a

presentation at the ASHA conference on " Teaching

hearing apraxic children at schools for the hearing impaired and

deaf " to talk about how successful this is. (ASHA -is that the

organization that is now calling it childhood apraxia of speech and

that blocks out all the information to the public so only CCC SLPs

can read the information....I guess it's a wash then. Who wants

anyone to start using that stupid name childhood apraxia of speech

for a condition one does not outgrow?!! Can we send them a link to

276 month old (or if we want to talk about it in years -23 year

old) 's talking page update to put on their childhood apraxia

of speech page?)

There are two types of schools for the deaf -I like the oral based

model due to the wonderful speech models Tanner had. I would have

liked a bit more sign -but in the end it didn't matter.

Summit Speech School is an oral based school that does not encourage

sign -even though they will acknowledge it if used. As

Kanter who we all loved and now miss once told me -the theory is

that a deaf child that does not speak verbally by the age of 5 most

likely will never speak, while one can learn sign at any age.

As we've gone into in the past -there is a huge amount of

controversy in the deaf world on cochlear implants. Those that are

just into sign " deaf culture " say it's " mutating " the child. I like

the response from one of the MD dads in Tanner's class to this

comment when a deaf man " told him off in sign " due to his son's

cochlear implants " So if my child had a heart defect you are saying I

should just allow him to die? Is that also a mutation to try to

fix that? "

I know apraxic children that were schooled at both types of hearing

impaired schools and did well. However again I prefer the oral

based model based on personal observations of my own son and the

many others in this group who attended the Summit Speech School with

him.

Here is a list of websites for schools for the deaf

http://clerccenter.gallaudet.edu/InfoToGo/schools-usa.html

=====

December 2, 2004

i would first for your own sanity, write down what exactly you want for your

son, discuss this with his therapists that he had.(hopefully they will give the

time) get those professionals to back you up when asking for specific services.

that was great you did not sign the IEP, that was strong!!! I'm sorry you did

not get what you want, be strong and know your son will be ok because your

going to make it happen.

chris

ssshhh <saveglady@...> wrote:

Today was my second arc meeting to determine where my son will attend

school and when I left today it was no where near finished. I left

feeling so helpless and confused. My son is 3 yrs old and has been

determined elgible for Early Intervention thru our school system. He

speaks none as of yet, possible 7 words but even then they are not

full words. The problem arises when the school choices are discussed.

I want my son to attend the Louisville Deaf Oral school and they want

him in a regular school. I have been to both types of schools and I

still feel that my sons needs are best met at the Deaf School. There

are two other children already there that have Aoraxia and are doing

wonderfully. I have had my son is therapy since he was about 15 mos

old and when he turned three, as most of you know, all of that

stopped. As of now, my son is getting nothing. I know what my son

needs as do his therapists, but no one seems to be listening. What

can I do? I walked out of the meeting today and did not sign my IEP.

I just do not know what to do now. Please someone help us.

December 2, 2004

Reply to Please Help Me:

First of all, you need to go over all of your evaluations in terms of what

the findings are and what the recommendations are for treatment. At an IEP

meeting, you and the child study team must first talk about what your sons

difficulties are/ what his needs are and how these needs are going to be

met/remediated. You should never talk about placement until you have

determined specifically what the needs of the child are and how these needs

will be addressed. Make sure that you have all of the evaluations your

child needs to support his needs. In other words, a speech evaluation may

not be all that you need. Maybe you need a neuropsych eval or an

occupational therapy eval. If the school is paying for these evals and

using CST people, you can disagree with their findings and insist that you

want independent evaluators and they may still have to pay for these evals.

Make sure you communicate with them in writing and get a signed receipt for

every piece of correspondence so you keep a record of everything in a

notebook. Also, keep a log of phone calls... who you spoke to, date, what

they said.

Also, remember, the school district doesn't have to provide " best "

placement, only the " approrpriate " placement in the " least restrictive

environment " or in other words, where the child would be educated if he

didn't have a disability.

There are many parents who feel that inclusion in a regular ed class is the

only way to go no matter what, and many will fight for this. But, I know

from my own experience with my son, who has dispraxia and sensory

integration disorder (now, all under the umbrella of non-verbal learning

disability) we had to endure a year in public school and it was an absolute

disaster. He hated school, cried constantly, was full of anxiety etc. The

kids at the school basically ignored him and treated him like a non-entity.

The truth is, if we want disabled kids to be really included in public

schools, the schools have to committed to teaching empathy, not only to the

non-disabled kids, but to their parents as well, because many adults are

ignorant and intolerant, and they pass that ignorance on to their children.

Sorry to get on my soap box, but I just wanted you to know that I know how

you feel. I felt helpless and miserable because I couldn't " fix " my sons

problem. I was sick over it. I wanted to get him out and into a better

environment, but we didn't have the money for a private, special ed school.

We got help from a wonderful advocate in NJ. I can e-mail you privately if

you'd like her name. My son has a bright future now thanks to all of her

efforts.

Remember, you have a certain time frame that you have to work with. In NJ,

you have 15 days to agree or disagree with an IEP. So, if you want to buy

time, make sure you send the district a letter within the 15 day time frame

stating that you cannot sign their IEP and state the reasons why. State

that they need to set up a date for another meeting to discuss.

If your school district says that they can handle your son's needs in the

public school and they come up with a legitimate plan, I believe that you

may have to at least give their plan a chance before you can challenge it

since this is your son's first experience with the public school. I know

this sounds horrible, but essentially, you have to allow your child to fail

and then get your evidence together and go before the CST and say, " Look, I

tried your way, and it didnt' work. Now, you have to try my way. " That's

why it is also important to have very specific goals and objectives in your

IEP that are measurable. You want to see evidence of progress and you need

real proof that the school's plan is working because if you think it's not,

you need to prove it. An example might be " In three months, will speak in

complete sentences 80% of the time. " I'm not sure if that's exactly right,

but I'm just trying to give you an idea of what I mean. " Will score 9 out

of 10 correct responses on the XYZ test of speech. " I think you get the

idea. In any case, if you can, try to contact a parent advocate in your area

who might be able to advise you and even represent you at an IEP meeting.

Some advocates volunteer their services, some charge a nominal/sliding scale

fee and some charge a lot.

There are also so web sites specifically for how to write an IEP that might

help. At least if your son is going to have to be in the public school

system for a year, you should have a really good IEP because that can help

you get him out of the school down the road. I'm not sure how to find these

websites. There are some other people on this list who may know. Perhaps

you can type in " IEP " in google.

Best of luck. Hope all of this helps.

Judi

>

> Today was my second arc meeting to determine where my son will attend

> school and when I left today it was no where near finished. I left

> feeling so helpless and confused. My son is 3 yrs old and has been

> determined elgible for Early Intervention thru our school system. He

> speaks none as of yet, possible 7 words but even then they are not

> full words. The problem arises when the school choices are discussed.

> I want my son to attend the Louisville Deaf Oral school and they want

> him in a regular school. I have been to both types of schools and I

> still feel that my sons needs are best met at the Deaf School. There

> are two other children already there that have Aoraxia and are doing

> wonderfully. I have had my son is therapy since he was about 15 mos

> old and when he turned three, as most of you know, all of that

> stopped. As of now, my son is getting nothing. I know what my son

> needs as do his therapists, but no one seems to be listening. What

> can I do? I walked out of the meeting today and did not sign my IEP.

> I just do not know what to do now. Please someone help us.

December 3, 2004

Hello:

I completely understand your frustration and heartache. It is

infuriating dealing with the school system. But try and stay strong

for your son. He needs you.

If I may suggest, it is extremely helpful to obtain an advocate for

your child. Maybe your local regional center can help you find an

advocate, try doing an advocate search online. Or someone here on

this site may know of an advocate in your city. A good advocate will

understand your frustrations, and help you get the appropriate

services for your son.

I was given some good advice, " Always have an advocate with you at

the IEP's " . In October, I had my daughter's IEP (she is 6) and had

an advocate with me. Having an advocate with me really made a

difference. However, it was a fight. I did not sign the IEP, like

yourself and I ended up going into mediation. However, in the end, my

daughter will be receiving the services/therapies that she needs.

And...the school district had to pay for the advocates fees!!!!!

Best of luck to you and your son.

December 4, 2004

Yes I do live in Louisville. I would love to talk with you sometime. I also am

in contact with two other parents of Apraxia children, we very much would love

to start up a support group and would love to meet more parents. You may im me

at saveglady@.... saveglady at

>

> HI dear

> Do you live in Louisville KY?

> I live in LouisvilleMy son 3 late talker

> We could meet and talk Let me know

>

> Lana,Preston mom

>

December 6, 2004

We would like to thank all of you who took the time to share you stories and to

offer ways to help us. Unfortunately, about an hour or so after I posted this, I

received a phone call stating that he would be starting at the Deaf School. I

was in shock for several days. The Arc meeting was horrible. I fortunately do

not have to repeat that nightmare until May. To any parent who is having

trouble, stick to what you believe in. I know some will say compromise, but do

what you feel is best, after having a well researched defense and educating

yourself on what is out there and what problems your child has and what other

information is out there. He will be starting his 1st day in a few hoursand I am

still a little in shock. I keep expecting them to call and say they were

mistaken. Thank you all very much.

__________________________________________________

December 6, 2004