APRAXIA -- Where is the Study?

February 12, 2002

Hello to all in this great group. I am mother to Lucas (2.4 hypotonia,

apraxia, dyspraxia). We are fresh out of

Birth to Three mediation! All terms and conditions are supposed to be

confidential.

Here is my big concern.

The Lovas study was done for Autistic children. When parents of Autistic kids

go to a mediation or hearing, there is now lots of case law to support them.

ABA therapy (controversial that it still is) can be supported and lots of hours

roll out. This is very important and good for the both the child and the

parent.

Where is our " Lovas " study?? I agree that PROEFA needs to be investigated (we

are using it too -- tks to all of you herein).

However, nowhere have I seen it claimed that a child with APRAXIA is going to

get better without therapy. Indeed, frequency seems to be almost important as

quality (ideally PROMPT). Yet when I sat in a room with all of my independent

evaluations, PT reports, oral motor specialist reports, and my fabulous speech

therapist etc pushing for Speech 5x week, I realized that there is no official

recognition of PROMPT as a " best practice " . Further, you can look on the

website for apraxia, but there is no real " smoking gun " like they have in the

above mentioned study.

Therefore, we end up with less hours than recommended by Developmental

Pediatrician.

What about a study to show how dramatically kids improve with intensive

speech/(and ot/pt if other conditions present)?

Or is it not the case? In other words, is more better? (speech) or not? I

think it is. Who is to say that our children couldn't benefit from ABA therapy?

At one point I spoke with an advocate. I told her my son has hypotonia, apraxia

and dyspraxia. She said - yes, I understand, but what is your diagnosis????

Yipes. I am afraid that what you find when you dig deeply is a lot of people

with an equal number of opinions. Any hope for a study to help us get

somewhere??

The main point is that if studies were done to compare intensive therapy versus

non-intensive therapy could it be shown that children could consistently be

brought to " typical levels of speaking " with APRAXIA or is that not going to

happen?

So so long, but I really think all of our lives could be made easier with this

type of support!

lois

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