Re: Global Dyspraxia/Verbal Apraxia & school concer...

[Guest guest]

,

I just went through something similar at Kayla's school. They wanted to

label her MR and PDD (multiple handicap). I was not going to sign anything,

before I went to see Dr. Agin in May. They had everyone sign the paper stated

what

went on in the meeting and that we are going to reschedule the IEP meeting

May. When I read what I was going to sign, it was written like I agree with

what they were saying. When I question it, they told me that they did not

need me to agree with what their label was, and I did not have to even be there

for them to label her. Then they told me I can write beside my signature that I

do not agree with the label. I need to find out if they can label her

without me agreeing with them. I feel that I should not have sign the paper

about what went on in the meeting, but since my husband sign the paper and we

have to do the IEP meeting, I felt at that time when I have more

information,

then it will be the right place for me to fight for what I know is true.

Because Kayla does not do the something at school as she does at home, they see

a

different child. She truly does understand when talking to her, but at school

they do not see the same child. Kayla is six years old and she still is not

talking. She does still have other issues, like fine motor delays, hypotonia

and still have other delays in her learning. Yes, she is not at a six year old

level with her learning, but I do not believe that she is Autistic and

mentally retarded. Kayla learns all the time, and I can speak to her the same

way

that I speak to any other child. If you have any advance for me please let me

know. The fish oil is not working for Kayla, but I am still giving them to her.

I also and having trouble stopping Kayla from doing some stimming behaviors

with her hands. Kayla does focus, well with her flash cards and listening to

her music. I believe that she will start talking if I can cut back on her

stimming off of socks and her hands. But if I tell Kayla to stop, she stops

right

away. What do you think about horse back riding for therapy?

Kathy

Laurel, land

[Guest guest]

Hi Kathy!

I'm not sure how professionals viewed Kayla when she was two, three,

four or five, or what type of placement she was in up till now. I

checked the archives but could not find much of her history outside

of the fact that recently you were looking for information on how to

secure an aid in the classroom to help Kayla focus, and seek therapy

coverage by insurance since 6. Just curious -did you read the book

The Late Talker and what do you relate to from Kayla's early years

or now?

Please let me know if I missed anything. If you didn't secure

evaluations from neuromedical and speech professionals prior, and

Kayla didn't benefit from early intervention services prior to 6, it

won't help to kick yourself now -just know that you are doing the

rights thing today in seeking a comprehensive neuromedical

evaluation from Dr. Marilyn Agin and in reaching out here for help

for Kayla. Dr. Agin was 'the' first neuromedical doctor to assist

me in advocating for Tanner, and she not only has helped Tanner at

this point -but hundreds of other children just like him. Dr. Agin

will help Kayla by securing an appropriate diagnosis and her written

report of appropriate therapies and placement. Apraxia does not

self resolve, and even though early intervention as early as

possible will secure the greatest results sooner which is always

better than later, Kayla is still only 6 years old and with all your

support and love she's in good hands!

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)

Older children seem to need 2 capsules of ProEFA -what dosage do you use? As

far as the EFAs not working, it sounds like that may not be the

answer for Kayla if you are not seeing anything at all. I suspect that the

rise in multifaceted communication problems directly correlates to

the majority of children who do respond to the EFAs. For those that

don't respond -there were always a rare percentage who would have

had apraxia (etc) anyway. All children respond to appropriate

traditional therapy even if it's slow without the EFAs. What type

of therapy, speech and occupational approaches do they use for Kayla

now? How often?

You are on the right path now. Just stay strong and know we are

here to support and help you to help Kayla.

=====

[Guest guest]

Thank you , , , Carol, Mari (and everyone else). I

appreciate you taking the time to share your experiences and giving

advice. I have a lot to consider.

,

I was wondering, in addition to 's current therapies, is there

something else therapy wise I should be adding to the mix?

currently does:

5 hours a week of individual speech therapy:

1 hour with the ish Rite Speech Clinic (free)

2 hours with our local university's speech clinic (minimal cost)

2 hours of private individual speech therapy

1 hour of Music Therapy (this is an OT that does this)

45 minutes of Hippotherapy with a PT

1/2 hour a day (2 15 minute sessions) of Samonas Listening Program

has done 110 hours of Tomatis & her protocol for the Samonas

is also done by Dr.Debra Swain (also an SLP) of the Listening

Centers in California where did her Tomatis.

's new private speech therapist uses the Beckman Oral Motor

Exercises and the Prompt Method and has been responding well

to this, making more responses on command than ever before. 's

Hypotonia seems to be all over.

Jill - Mom to (4)