? - Re: ABA with apraxia ? you guys are asking this again?!!

[Guest guest]

Suzi -you wrote:

" They also told me that they thought she was a selective mute. "

You are in California and same things you describe we went through

on the other side of the country in NJ when Tanner was in preschool

as you can read in just one archive I have below. (others in there)

I appreciate that people feel strongly about behavioral therapy and

for a good reason. I appreciate that wise people will incorporate

some types of behavioral approaches.

Parents,

http://www.teachmorelovemore.org/BestTrendsDetails.asp?faqid=201

teachers,

http://www.interventioncentral.org/htmdocs/interventions/behaviormenu.shtml

police officers

http://www.houstonspacesociety.org/ols/psyops.html

and yes speech and occupational therapists should and do use behavioral

approaches.

Incorporating some types of behavioral approaches is a good thing.

But incorporating some types of behavioral approaches doesn't mean

ABA therapy!

What I don't appreciate are those who ignorantly believe that you

can treat a psychical impairment with a psychological approach.

Where they so much want to shove your child into a box that instead

of recognizing an impairment because " obviously the child is bright "

that it can't be an impairment -it must be selective mutism or

something. So instead of helping -they punish because they assume

your child 'can' talk -and is just being " manipulative " which by the

way was the word used more than once in the IEP we never signed.

Your child and mine weren't the only two this happens to.

The lesson for all is don't assume a child doesn't want to when

perhaps they can't and need and want to be taught how to. Bad

behavior doesn't always come from not being able to speak -it can

and for us did come from being forced inappropriately by

unknowledgeable people. I'm know there are good ABA therapists -and

they too know that ABA is 'not' for every child that is not talking.

Here's an archive (just one) where you can see we went through the

same thing as you Suzi:

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

Date: Fri Feb 11, 2005 6:17 pm

Subject: Re: Am I being naive? SLP/OT issue kiddietalk

Hi !

You don't mention -but I'm going to assume the SLP and the OT are

school based? I mean otherwise the obvious advice for private is -

" Next! "

(there are tons of other professionals out there)

I found myself in the same situation as you with the school back

when Tanner was three. You don't even have to 'be' naive to know

it's fun to just 'act' naive when you are dealing with people that

are messing with your baby! (was going to say idiots but thought

I'd be nice)

Just remember the average person has average IQ -so just outsmart

them -and even use their lame info to help advocate for your child.

Let them say he's got a thin upper lip -instead of giving them a fat

upper lip. Get all of their " professional " reports in writing. In

addition -document their comments about why they disagree or won't

even consider the diagnosis already given to your child. Then use

that to go above their heads, superintendent of schools, to prove

that they don't have a clue about your child's condition, no less

how to provide appropriate therapy for him to give him a chance to

be mainstreamed as soon as possible. Be nice -not emotional. You

can even say " I'm sure they are wonderful professionals in dealing

with children that have conditions that they know about -like simple

delays and all " Use their documentation to prove just how clueless

they are in dealing with 'your' child. Back up what you say not

with what you believe -but with what the private professionals that

worked with him for __ years say. And add " I myself for example am

not a pediatric neurologist, I'm just a parent, but I believe when

Dr. ____ states that my child is not ____ and instead has _____ and

that _____therapy is appropriate, that the type of therapy the

school based SLP and OT want to do is highly inappropriate. By the

way I'm just curious -neither of them are going to medical school to

first become neurologists are they? " " Oh just wondering because

they seemed to disagree with everything that a respected pediatric

neurologist had to say and I wondered why " " My husband and I (or my

wife and I) have checked into appropriate out of district placements

for my child where he will be able to receive appropriate therapies

and placement with professionals who are knowledgeable about my

child's condition and who respect the neuro medical doctors and

private SLPs who work with him "

Request " out of district " placement immediately, follow up in

writing.

So yes -we were in that situation -and yes -Tanner was put into " out

of district " placement at The Summit Speech School for the hearing

impaired in New Providence, NJ. Most all of the apraxic children

that attend there from our group have no hearing problem 'at all'

Kanter (we miss you) let our kids in to this school because

she felt all kids had a right to have a voice -not just hearing

impaired. I hear today that's not the case for many of you. I say -

fight it - would have! just in case you don't know

since for some strange reason it's not mentioned anywhere anymore -

is the one that started the school -and made it what it is today.

passed away of cancer.

http://www.oraldeafed.org/schools/summit/

http://www.summitspeech.com/

's on this page from when we were on Inside Edition

http://www.cherab.org/news/insideedition.html

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

Kanter always told me in regards to IEPs - " you have to play

the game with them " I say -if you are going to play a game -might

as well have fun. I'd love to share some of the fun things I've

said at IEP meetings. I do have fun with it. (some of it is in The

Late Talker -have you read that?)

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