Re: son finally diagnosed/apraxia diagnosis

[Guest guest]

Hi Alison, na, and all the new members!

Welcome to our group! We are all so happy as well that you finally

found us and will be able to learn some of the strategies that we are

finding successful with helping those with communication impairments

or delays. The strategies used for apraxic children I have been told

by a few experts will most likely benefit any late talker -no matter

what the reason. I can tell you that it's never to late to begin,

and there is always hope no matter what the prognosis or diagnosis.

Some of the " unbelievable " success stories I've lived through, or

read here, just give me chills.

A shared point for most new members is does your late talker fit the

label of apraxia. Alison, your son's SLP is correct in that the term

apraxia used to be only used in the adult population, like aphasia,

however for many reason that's not always the case and one doesn't

have to look far to find literature about apraxia in the pediatric

community. And the apraxia label is being used, and being lectured

about by PhD's and MD's, etc., perhaps due to the rising number

of " late talkers " who are not " just starting to talk " like they say,

which they either choose not to see or choose to ignore. Due to the

rising awareness, apraxia and this diagnosis has also opened the door

and given hope to those children that were unfortunately mislabeled

and/or believed unable to communicate for cognitive or genetic

impairment reasons -or due to autism, or PDD, which now many more

parents and professionals are finding out that in treating the

apraxia, which in many cases overlaps in other diagnosis's, these

children can learn to talk.

Alison, your son is 11 years old and has 15-20 words and is an

example of the sadness of not seeing the " label " apraxia. With the

label hypotonia, CP, and PDD, the SLPs that worked with him continued

to assure you that group therapy is best for him -for years and

years. I'm just a parent myself, not an SLP, but shouldn't any child

who is not responding to group or " inclusive " therapy (or ABA therapy

alone) be given the extra help of increased amounts of one on one ST

and OT at " some " point? There are articles that can be printed off

the ASHA website (now only if you are a registered member which as an

SLP your son's therapists should be) that talk about inclusive

therapy and how it is the best for those children with mild delays to

perhaps moderate delays in speech. The experts in these articles do

not recommend inclusive therapy (a fancy name for group therapy) for

those children with " severe delays " in speech, which would encompass

an 11 year old child with only 15 to 20 words in his vocabulary. As

na brings up, did they provide Ian with alternative means of

communication like sign language, PECS, or augmentative devices -a

way for him to communicate?

With the PDD, CP and hypotonia diagnosis you probably already have

therapies in place and insurance willing to pay. If you are new to

apraxia however and do not yet use some of the following with your

son you may want to explore some of these as well. You may want to

explore oral motor therapy, touch cueing therapies like PROMPT, the

Kaufman techniques, Omega 3 and Omega 6 supplements like ProEFA -the

one from Nordic Naturals, multisensory approaches to therapy such as

therapeutic listening, cranial sacral therapy, physical and

occupational therapy, and other gross motor " therapies " like

gymnastics, dance, karate, and swimming. Of course there are many

other wonderful programs out there worth exploring like Fast For

Word, and other educational computer programs. You may also want to

seek out (if you have not already) private evaluations from medical-

such as neurodevelopmental, speech (and possibly also OT, PT) and

educational (for reading, testing, etc.) professionals that are very

knowledgeable about multifaceted communication disorders like autism

and apraxia -that you pay out of pocket for if you are able to. I

appreciate that you can in many cases get the school to pay for these

outside evaluations -however I don't fully believe that they are

really " outside " then, and I know at least one or two professionals

that will agree with me on this point including an attorney for

special education.

The child late to talk at two is comfortably viewed as a " late

talker " by most of the world. If that child is not just a late

talker though, the same child years later at seven or nine may in

some cases be found to have cognitive delays due to ignorance and

inappropriate testing to explain why he is unable to speak. Apraxia

does not affect cognitive ability, even though it could overlap with

other disorders and impairments. Amazingly -once some essentially

nonverbal children receive the controversial diagnosis of apraxia and

begin to receive appropriate therapy for the first time -their

cognitive and learning ability increases -or is that just because as

they begin to communicate more they test better and are viewed

differently -I keep forgetting which.

Some critics of apraxia in children will argue that it's a

new " phase " -that just because a child is late in speaking they will

be given this new label now. Of course no matter what the diagnosis

there will be misdiagnosis as a given -however between them all, the

apraxia label provides late talkers with the best chance at a verbal

future in cases where they do not just have a delay. Children

misdiagnosed as apraxic who were really classic " late talkers " will

just start talking, the speech will come in as it should -and at a

young age -as it would have without therapy or ProEFA (In addition,

those same children will not stop progressing at the same rate or

regress when taken off ProEFA) so the downside would be the

temporary undue worry and expense. Children misdiagnosed as apraxic

who really have difficulty talking due to cognitive or many other

impairments -they will be given a better chance to communicate than

usual, so it's hard for me to even see a downside at all. On the

other hand, what do these same critics have to say about late talker

children misdiagnosed as mentally retarded or autistic?

For anyone looking for local support which is so important for many

reasons -if you check the support groups listed at the

http://www.apraxia.cc site you can see if there are any in your area

http://www.shop-in-service.com/affiliated_groups.htm. If not -we are

here to help you begin one -just let us know! And for ProEFA you can

find resources for that or Coromega, Efalex or Eye Q there too under

EFA resources at http://www.apraxia.cc or http://www.shop-in-

service.com/efa_basics.htm.

Again, welcome to our group and please continue to ask and share so

that we as a group can continue to help!

PS -ST and OT stand for speech therapy and occupational therapy.

=====

[Guest guest]

Hi ,

I might not have made myself clear last night. My son was

diagnosed when he was 18 mths old with delayed development (dd). He

started school at that time and received pt, ot and st. We moved to

the Atlanta area and I started taking him to therapy here at the

children's hospital. They gave him speech 1 on 1. All the time they

talked about the symptoms of Apraxia but they never called it

apraxia. His doctor then diagnosed him with hypotonia when he was

about two yrs. It wasn't until last week that he was dx with cp,

pdd and apraxia. What I don't understand is they all saw the

symptoms but none of them could name it. At his school today I was

talking to his teacher and st and the st told me he was doing better

this year because he was in a group. Until now we didn't know what

to do for Ian, but now I feel we have a plan ahead of us. Anytime

we asked about his future we were always told that they couldn't

tell us how Ian would do. Well of course not when he had a dx of dd.

He had other phsyical problems when he was younger, like he didn't

walk until he was 3yrs old. He did say hi at around 20 months, but

nobody else heard him. He wouldn't even say it for his father.

Finally right before we moved his teacher called me and told me that

I wasn't crazy, she had finally heard him. I think they all thought

that I just wanted him to talk so much that I thought I heard him.

They have always worked on sign language since he was in

kindergarten. He is just now really picking up on it. He wasn't to

good with his fine motor back then. Much better now. So I think that

is why he is better now. He had a Mawcaw. But he didn't really seem

to use it. I don't think it was user friendly with him because he

could only talk about the 12 things that was on the board. They

have one out that is called the Dynovox (I think that is what it is

anyway). It is like a little computer. That I think he would do

better with, maybe I should check into that again. The last time

they tried him with it was about 5 yrs ago when he stopped private

therapy. (lost medicaid and insurance wouldn't pay for it). I am

not sure what PECS is. He can communicate even though he has such

few words. Sometimes he will say a word and then not say it for

awhile.

Thank you for telling me about the different therapys. I didn't

know there were so many. I have read about prompt on the internet.

I will be sure to look into the rest.

We do use omega 3 and omega 6 (it is called udo's choice) it is in

oil form. He has been taking it for about a month now. We see only

a little difference so far.

Well it looks like I said enough for now. (Probably TOO much) Thanks

for letting me have my say. It is nice to finally be able to say

what is wrong with Ian.

Alison

--- In @y..., " kiddietalk " <kiddietalk@y...>

wrote:

> Hi Alison, na, and all the new members!

>

> Welcome to our group! We are all so happy as well that you

finally

> found us and will be able to learn some of the strategies that we

are

> finding successful with helping those with communication