Re: Re: finally have a possible diagnosis of dyspraxia (not just a late talker)

[Guest guest]

I think there are sevaral reasons for a diagnosis of

apraxia. This may sound selfish of me, but without it

I would have to pay out of pocket for all of Kaeli's

therapy. With the " label " insurance considers it a

medical condition and not just a delay. Also, since I

would not have been able to afford to pay for therapy,

Kaeli would've had to wait another 2 mos to get

therapy started under our early intervention program.

Now that we can go the private route, Kaeli will be in

therapy in just 1-2 wks.

Also, I have read in sevaral places on the web that

traditional therapy does not work for apraxic

children. I think that is another very important

reason for an official diagnosis. Just having someone

that KNOWS apraxia and deals with it on a regular

basis makes me feel confident that this SLP will be

able to help my daughter learn to talk in a shorter

amt of time than someone who knows nothing about

apraxia.

I'm not relieved to have a " label " for my daughter,

but I am VERY relieved to know that we now have

someone that is going to be able to help my daughter

speak!!!

Bridget

mom to Kaeli (almost 2)

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[Guest guest]

I guess I should've phrased that as " in MY case, there

are sevaral good reasons for a diagnosis of apraxia " .

My daughter was not qualifying for ANY therapy or help

right now without it. I desperately needed her in

therapy because I KNEW she was not following the same

path of speech development that most children do.

Also, I didn't want someone to start out with the

traditional therapy that I've heard over and over does

not work for apraxic children. I didn't want to waste

another precious second on getting her on the road to

speech. I will be more than happy if someone

" changes " the diagnosis later on, but in the beginning

if there are definite signs of apraxia, then getting

the diagnosis sooner is better than later. Especially

when I have been screaming my head off trying to let

someone know that my child needs help and no one seems

to listen because everyone assumes that a child is

" just late talker " . Even when, like in my case, my

daughter has been trying desperately to talk since she

was 13 mos. No one seemed to pay attention to the fact

that she could not say any sound other than " buh " for

9 mos or that she used very ingenious ways of

communicating that even still amaze me sometimes. No

one wanted to believe me when I would tell them that

she REALLY wants to talk, but there's something

stopping her. Everyone I came in contact with ASSUMED

that she was either " a little einstein " or " lacked

motivation and would just talk when she felt the need "

simply because she showed such high receptive ability.

All in all, I don't think I was really searching for a

diagnosis of apraxia, I was just searching for someone

to say " yes, there seems to be a problem and let's

start therapy " . But, when the SLP mentioned apraxia

and I already knew it to be true in my heart. I guess

I felt somewhat relieved to finally be heard and to

know that there was someone extending a hand to help

my daughter. I FINALLY felt that my daughter wasn't

alone in this and had someone that knew how to help

and wanted to help her. I FINALLY felt that someone

understood the fact that my daughter wants to talk

more than anything and was willing to get her started

on that road. As of yesterday, I no longer feel alone

and isolated. I no longer feel that my daughter will

be pushed aside simply because her only problem seems

to be speech. Because she was " just a late talker " 2

days ago professionals or insurance companies did not

want to help her. But, because today she's

" dyspraxic " people will pay attention to her needs:

insurance will cover her and a therapist will help her

learn to talk. I didn't need my child to be labeled,

I needed her to be RE-labeled. Unfortunately, she had

already been labeled by people who didn't know a thing

about her other than the fact that she was slow in

learning to speak (therefore, she was labeled " just a

late talker " ). Which, in my opinion, is a label with

MUCH more to lose. (no one thinks a late talker needs

any help).

I'll admit I'm thrilled to have the diagnosis of

apraxia. Without it I'd still be on my own right now.

But, that's not to say that I even completely believe

it to be true. In all honesty, I'm a mixed bag of

emotions right now and I'm not sure what I believe

anymore. But, the one thing I do know is that this

precious child of mine is finally going to get started

in therapy within the next couple of weeks. I no

longer have to wait for her to get even farther

behind. I have someone that sees the same problems in

my child that I do and I feel like I have this huge

ray of hope that my daughter will speak what's on her

mind one day soon.

, you said exactly what I'm feeling. All I want

is for my daughter to be able to talk. I might meet

up with some disappointments along the way and wonder

if I ever will hear her talk, but I know for right now

we will be getting help SOON. And that's ALL that

matters to me.

Bridget

mom to Kaeli (almost 2)

__________________________________________________

[Guest guest]

Dear and Bridget,

I totally agree with you on labels and that every

child is a individual with different needs for

progress, I also on the other hand think every parent

like Bridget are so scared for their children that the

need for a diagnosis in the begining of this difficult

journey is also a just a need for themselves just to

know, grasp and absorb what is going on with our

children why they are doing what they are doing and

not doing. I also think that eventually parents do

realize that the " DIAGNOSIS " is absolutly not the most

important thing but that the therapy their children

are receiving is working and their children are making

progress. I know it took me 7 months to get a

diagnosis for JAck, I was obsessed to prove that I was

not crazy, that JAck had something else going on and

that I was not making a mountain out of a mole hill,

and now 5 months after getting that diagnosis I know

that it is not what is going to help my son talk. The

therapy that Jack receives works for him and he is

talking he is making progress with or without a

apraxia diagnosis, infact his EI slp has recently told

me she does not think he has apraxia but is just

delayed, I totally disagree with her but it is not

what is important, she works on his oral moter issues,

strengthening his muscles and he is benefiting and

that is all that matters and he has a prompt therapist

that is working wonders on him, so you are right it

does not help to have the confusing diagnosis it gets

confusing and a real pain in the you know what.I just

think every parent goes through that tough stage in

the beginning and we should just take it a little easy

on Bridget, she is just starting this journey and we

all know it is a learning process.

Hope you agree,

Sincerely,

Eileen mom to Jack and sean

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