Re: Different topic....looking for simlarities

[Guest guest]

, he sounds like my daughter. She has been in speech since she was 20

months and turned 3 last week. Putting her in speech was against my doctor’s

wishes but I felt I needed to do something. I have 2 older children and didn’t

think this was “normal”.

 

They first told me it could be apraxia or just a speech delay. Then continued to

tell me that apraxia was too difficult to diagnose at that age so they treated

her for speech delay. At 20 months she could only say mama, but cognitively she

was at the 35 month old level. As time went on she started producing more words

and forming sentences. She now has about 30 intelligible words, but will speak

in sentences which only I can understand. It’s kind of like she can make the

sounds (correct or incorrect) of the words with the correct amount of syllables

but can’t say the word. If that makes any sense.  Many people can figure out

what she is saying because she does a lot of pantomiming.

 

I recently had her re-evaluated through the school system (we have been doing

private therapy all this time) and that is when she told me “It could be

Apraxia, but I’m not the end all be all”

 

We don’t have a neurologist and just having moved to the city we are in I don’t

have a good pediatrician that knows my child.  In fact the pediatrician before

this told us she would eventually talk. I’m kind of lost and don’t really know

what to do next. I want to meet the “end all be all” person so I can get the

proper therapy for her.

 

 

ne

From: naturalforce76 <naturalforce76@...>

Subject: [ ] Different topic....looking for simlarities

Date: Thursday, January 22, 2009, 12:19 PM

I'd like to be able to speak with someone whose child is similar to

mine. My son has not been diagnosed with Apraxia although one of his

speech pathologists has suggested it as has his neurologist as well.

He started receiving speech therapy at 16 months and will be 3 next

month.

His receptive language skills are fine. His expressive language skills

depend on how you look at it. He has the vocabulary he should have,

the sentence structure... .things like that are on target for

development. However, he can't speak those things. Neuro said it

seemed as if the signal gets blocked somewhere between his brain and

his mouth.

He spent the first 20 months of his life talking with his mouth

closed. It was A LOT of work to get him to open his mouth when

speaking. He speaks only a few words (maybe 20) clearly now. Yet he

" speaks " every word you can think of though not understood clearly.

I've read and been told such varying things about Apraxia. I am

currently waiting for an appointment to open for an evaluation for him

but have been unable to find a speech pathologists with experience in

this field close by. The one I'm waiting on an appt for is over 2

hours away.

We're also going for an augmentative technology evaluation next month

on the 23rd to see about getting him something to help that way. He is

learning sign language and picks it up quick.

Lately, he's started giving up or not trying to talk at all when he is

around someone other then me or his siblings or grandmother.

I look forward to hearing from you.

[Guest guest]

,

My son started out very simliar to yours. He's always understood

everything we say to him. He would " say " only 4 words at age 22 mos

(mama,dada,(s)issy,(k)itty). When he tried to " speak " he had his

mouth closed, but would 'say " all of the syllables for the word he

was trying to say (ex. SpongeBob Square Pants -mm aa air an -

something like that). He always got the right # of syllables, so if

you happened to be there when SBSP was on tv, then you had an idea of

what he was talking about. He got into EI at age 2 yrs, his EI SLP

suggested the apraxia dx. He started using word abbreviations and his

vocab took off. I think his confidence rose b/c we were

understanding him more, so he " talked " more! I've not taken him to a

nuero. He is now 4 yrs (this month) and continues w/ 2x week ST at

our school, he attends a private pre-k 2/x week w/ typical peers. We

can really understand most of what he says now (his vocab is huge,

sentence structure is pretty good, occassional mix up of the words),

his pre-k teacher (reg ed) was concerned about having him, but says

she can understand most of what he says too. He can be a bit shy

around unfamiliar people, sometimes won't say anything, other times,

he'll warm up and talk after a bit. We still hear/see the

occassional " never min(d) " if he doesn't want to repeat something or

the whine b/c we didn't get it the 3rd time he said it, but... We've

worked really hard with him, he's worked even harder! He's not a

perfect speaker by all means, but when I look back on the past 2

years, wow! What progress he's made, I wasn't sure if he was going

to talk.

Good luck to you,

Bonnie

[Guest guest]

I know what you mean. Here I was told by the speech pathologists the

neurologist has to diagnose him....and the speech pathologists told me

the neurologists has to diagnose him!

I talked to the speech therapists I had found 2 1/2 hours away today.

She has agreed to evaluate him for Apraxia but says that I will have

to at least bring him in once a week to her (2 1/2 hours one way mind

you) for her to be able to work with his local speech therapists

successfully! All of the speech therapists around here have heard of

Apraxia....but don't really know much about the differences in

treating it, how it differs from typical speech delays, or how to

diagnose it.

The speech therapists did tell me that with Apraxia, the children

benefit from OT to. Our OT stopped services after 6 weeks cause she

felt he was to young and had to short of an attention span to benefit.

So, I'm just going to take him to the speech therapists 2 1/2 hours

away and see what she gathers from her evaluation (which she said will

only take 45 minutes ?? ). Guess I'll go from there.

My little man does seem to be ahead of the game with his cognitive

abilities. Honestly though....I think that makes it harder for him. He

has so much to share, and is so bright, and is trapped inside of his

own head. It's heartbreaking. I have two older children and for years

a special needs (FAS and PMG) stepdaughter. I knew each of them at 3

years old so much better then I know my son now. Quite simply, this

sucks.

I've seen some videos on Youtube of parents who posted their children

with Apraxia speaking. They all seem to do so much better then my son.

There is one who is in a car seat drinking a Pepsi.....he sounds

exactly like he is where my son is. (sigh)

Thanks for sharing your information with me. If ever you want to

chat...I'm on messenger at naturalforce76@...

>

> From: naturalforce76 <naturalforce76@...>

> Subject: [ ] Different topic....looking for

simlarities

>

> Date: Thursday, January 22, 2009, 12:19 PM

>

>

>

>

>

>

> I'd like to be able to speak with someone whose child is similar to

> mine. My son has not been diagnosed with Apraxia although one of his

> speech pathologists has suggested it as has his neurologist as well.

> He started receiving speech therapy at 16 months and will be 3 next

> month.

>

> His receptive language skills are fine. His expressive language skills

> depend on how you look at it. He has the vocabulary he should have,

> the sentence structure... .things like that are on target for

> development. However, he can't speak those things. Neuro said it

> seemed as if the signal gets blocked somewhere between his brain and

> his mouth.

>

> He spent the first 20 months of his life talking with his mouth

> closed. It was A LOT of work to get him to open his mouth when

> speaking. He speaks only a few words (maybe 20) clearly now. Yet he

> " speaks " every word you can think of though not understood clearly.

>

> I've read and been told such varying things about Apraxia. I am

> currently waiting for an appointment to open for an evaluation for him

> but have been unable to find a speech pathologists with experience in

> this field close by. The one I'm waiting on an appt for is over 2

> hours away.

>

> We're also going for an augmentative technology evaluation next month

> on the 23rd to see about getting him something to help that way. He is

> learning sign language and picks it up quick.

>

> Lately, he's started giving up or not trying to talk at all when he is

> around someone other then me or his siblings or grandmother.

>

> I look forward to hearing from you.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>