Re: & ABA

[Guest guest]

" That day there were 10 attorneys

to our 1 attorney and

Mel's victory was huge "

I'm speechless Robin as this update is just incredible good news. As

you know we went through this -just not as intense or so long -with

our public preschool prior to Tanner being placed in out of district

placement. The school professionals at that time didn't suspect

Tanner was autistic -but believed he had selective mutism. They used

some ABA approaches and back then I didn't know how inappropriate

they were in theory for apraxia -I just know that my child was left crying for

hours until his throat was hoarse saying " ma " " ma " " ma " over and

over. They felt Tanner was being " manipulative " because he didn't

take his socks and shoes off for OT so they told everyone to ignore

him and not help him...left him there crying while they did OT -then

all the kids that day had a " special snack " as one of the parents

brought in bagels -and ate them in front of Tanner while he sat on

the floor and cried " ma " " ma " over and over. How do I know this

story? The *^%*# teacher told me the story to " Prove " to me how

manipulative Tanner was that he " refused to take off his socks and

shoes even when OT was over and they went for snack time " She was

encouraging me to follow through with this at home and not give in to

his manipulative behavior. Thankfully one visit to pediatric

neurologist Dr. Trever DeSouza who we scheduled an emergency visit

with ended that. He put in writing for us way back when that it's

inappropriate to punish a child with a motor planning disorder and to

give Tanner the benefit of the doubt.

Like Mel -Tanner never had behavior issues -ask Zimet or any SLP or MD

that worked with him.

If a child is nonverbal -and being told they have to do something

that they just can't do...I just can't imagine. I do know that the

day I picked Tanner up from school that day and heard that story and

saw his swelled up eyes and hearing his hoarse voice saying " ma " I

went home and threw up. It made me sick to know that I actually

brought him there and left him with these incompetents.

Thank goodness that was the worst story...and we got him out.

What types of speech therapy are they doing now for Mel? I had

thought that Mel was talking a little bit...she doesn't talk at all

now? And for those that don't know who " the Little Mermaid " is

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

=====

[Guest guest]

Hi Robin,

Your story about is so difficult to hear. So sad what she

went through. In my book, the problem should have been stopped the

moment she started having behavior problems which were non-existent

prior to this. It is the job of professionals to recognize this.

Unfortunately, in the professional world, sometimes a closed mind can

be helpful, and sometimes it can be harmful. If a patient is sent to

a neurologist, a developmental pediatrician, a Speech therapist, an

ABA therapist, and a behavior therapist, there is a great chance that

there will be AT LEAST two or three different diagnoses. Specialists

look for problems they are familiar with. An ABA therapist who views

their job as treating behavior problems might mistakenly tune in to

the behavior problems immediately and focus on that. They might miss

the fact that the behaviors never existed before the therapy started.

That should have been a red flag to them that somebody clearly

missed. It started off a whole series of problems, it sounds like

that just made things worse and worse.

I know for my son , (bad behavior issues are part of his

syndrome, but in the school he had been in for a full year they have

NEVER seen them), if we had tried to use ABA before he had any

speech, and given him expectations he couldn't fill, the behavior

issues would have arisen immediately. A professional has a

responsibility to know when their treatment isn't working and to say

it's time to move on to something different. The best prevention for

this is being lucky enough to have a pediatrician, therapist, teacher

or some individual who looks at someone like your daughter as an

individual. As we read here on this board, many people are missing

any one person of knowledge involved in their child's care to

advocate for their child. Therefore, the job falls on the parents who

can't possibly know all the ins and outs of diagnosis, treatment,

etc. It's a horrible system. And when your daughter was young, there

was so little knowledge about treating apraxia, autism, ... that even

professionals were doing the best that they knew. Probably not much

of what they did made things better, so they didn't really expect

improvement,many times. They were just trying so they could be doing

something, anything to try to make things better. This is not usually

a good approach, but when it's all people have, it's what tends to

happen.

's story is SO important. It needs to be out there for

physicians and therapists and parents to hear. It needs to be out

there so everyone remembers the immense responsibility they have in

taking care of people. Someone has to take the initiative to stand up

and take charge when someone is not responding to the system, and

even moreso when someone is getting worse in the system. All

professionals are first human beings, and are therefore fallible. Bad

things will happen to good people for no reason, because there were

mistakes made, and finally (and thankfully) rarely because someone

actually intends harm. Most people are good. Most people in the

caring professions have good intentions. If you want to read some

ideas of how you can protect yourself and your children, you can

Google Jerome Groopman, MD. He had an encounter with physicians that

could have cost the life of his young child - a misdiagnosis. Here

are a couple of links you might find interesting, if you want to read

more about how you can advocate for yourselves and your family.

http://www.pbs.org/newshour/gergen/jan-june00/groopman_6-8.html

http://www.idinchildren.com/200801/clinical.asp

Thank you for sharing your painful story Robin. I hope you have been

able to find the right people to listen to it. Good luck to you and

your daughter. By the way, have you heard of Barbara Arrowsmith

Young? She has quite an amazing story as well. Here's a link to her

story

http://www.aan.com/elibrary/neurologynow/?

event=home.showArticle & id=ovid.com:/bib/ovftdb/01222928-200703040-

00011

Again, thanks Robin and good luck to you. Gretchen

-- In , " Robin C. Ketchem "

<rcketchem@...> wrote:

>

> Hi ,

>

>

> had a very caring and wonderful ABA therapist that I had

> known personally for 10 years prior to receiving ABA

> therapy. The reason it did not work for Mel was due to her severe

> global apraxia. When was told to sit down, write her

name,

> tie her shoe, count to ten, say her name, or given another

> motor planning activity and failed to complete it the therapist

> would count it as a behavior issue. Prior to receiving

> this therapy she never had any behavior issues reported. Once

this

> program began , the ABA staff documented that was a huge

> behavior challenge. When's

> Mel's attorney challenged this document in a due process hearing

he

> was told by the ABA experts her behavior concerns were from not

being

> able to complete the motor planning task they wanted her to

> complete. They felt she could complete them but chose not to.

> During that hearing,

> I had one of Mel's private therapist come and explain severe

global

> apraxia and we won that due process hearing plus every other

hearing

> we were called to. We also won the federal lawsuit as well for

> . It took 4 years to bring our case to federal court due

to

> all the delays the

> school district and IU kept filing. Mel had her day in court and

at

> the end of the day the Federal Judge actually apologized to Mel

for

> the horrible treatment she had received and hoped winning the

> lawsuit would make her life easier. That day there were 10

attorneys

> to our 1 attorney and

> Mel's victory was huge! I still remember when the Judge asked our

> family to approach him at his bench and he had to ask which one

was

> from our three daughters. He later apologized to us and

said

> that he really was expecting to look much differently

given

> all the

> information he had received from the school district and the IU

the

> last 4 years. When he was apologizing Mel extended her hand out

and

> shook his hand and gave him a smile. Since Mel was unable to say

> thank you verbally, she found a way to still show her expression

to

> the Judge.

>

> I have a nephew who has autism and is currently in a ABA

program.

> His challenges are not motor planning so he is breezing thru their

> program and making great progress. I believe in ABA but not for

> those with severe global apraxia like Mel's. This treatment just

> further frustrates individuals who have severe motor challenges.

As

> Mel has explained recently to one of her doctors thru her typing

she

> has a brain and a body and both are not connected to each other.

> Mel's goal is to have the two become one. She is working hard

each

> day on her goals

> and has decided it is time for her to have a say in her therapy

> program due to Mel now being 24. With Mel's help a whole new

> approach and therapy program has been developed. Mel has a very

open

> minded medical/therapy team and support this new therapy program.

>

> The weather here is beautiful and Mel is trying to learn to motor

> plan playing tennis. This is a huge undertaking for the whole

family

> as we all play except for Mel. We would always offer Mel the hand

> over hand approach so she could play as well but until recently

she

> had refused. Now she has

> accepted the hand over hand approach and will play with the rest

of

> us. What stopped Mel in the past was that she did not like to

look

> different. That is why it has taken so long for Mel to accept a

> communication device. We had two prior evals to this last one

where

> Mel turned on the device typed

> " I want to learn how to talk " and turned off the device and handed

it

> back to the therapist. This last eval Mel was ready to accept the

> device and move on. is teaching me on a constant basis

what

> I want for her is not necessarily what she wants for herself. Mel

> still has a long journey ahead

> but I sure a lot will be learned!

>

> Well off the the courts!

>

> Robin

>

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