Re: Helen-Longggg vent

December 13, 2000

I did a little surfing on Dyspraxia this morning and found these few sites. They probably won't tell you anything you don't already know but perhaps there's something here that you can show the Speech pathologist. It's a sad state when we parents have to teach the health professionals but unfortunately it seems to be almost the 'norm' these days. I get angry when I hear helath professionals trying to put children in the 'too hard' basket claiming they don't know how to help this child. My reaction is - if you don't know either learn or find someone who does know - they aren't allowed to just give up.

http://www.parentsplace.com/expert/pediatrician/general/qa/0,3459,1064,00.html

http://www.cs.amherst.edu/~djv/DVD.html

http://www.emmbrook.demon.co.uk/dysprax/homepage.htm

http://indigo.ie/~dyspraxi/

Do let me know if there's anything I can do to help!

Love

anneI believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly.

December 17, 2000

Hi Helen.

I ran into this same problem with Gracie...she has swallowing/breathing/chewing

issues that are affecting her speech. She has a forward swallow, which

is messing up the whole structure of her mouth. And of course, the therapists

are now telling me that they have no idea how to help one as young as Gracie

is with this problem. They know how to help older kids, ones that can imitate

tongue movements and follow direction better than Gracie can, but they

have never helped a younger child. So they want to do nothing about it

until she's older and they feel like they "know" how to fix the problem.

I said, so what?? You're not going to do anything at all?? You're just

going to let it keep getting worse until she's 5 or 6 years old and we

still can't understand half of what she says?? I don't think so!! LOL

Gracie is like Bre...I can understand a lot of what she says, but only

because I'm around her all the time. People that aren't used to Gracie's

speech can't understand even a quarter of what she says.

*hugs*

angelbear1129@... wrote:

Please

look after yourself Helen so I dont have to worry ok!!!

Love ish

#######

I will Mama!!!! (That's what the girls call me)

I've just had a bummer of a week is all. Went to the headache

neurologist

on Tues. He can't do anything more for the headaches that have

returned

until they get this mess with my heart staightened out. As a lot

of

the

medicine he would presrcibe can not be taken by heart patients he said.

Wednesday

I seen my regular doctor, he doesn't like the idea I have to wait

so

long to get in to see my cardiologist, so he ordered a heart monitor to

be

worn

for the next two weeks to find out what is causing the aahythmia, and

which

type it is. So I go in tomorrow and get that hooked up.

My blood

pressure

keeps going up for no reason that I can figure out. I take my meds

everyday

for it.

On TOP of all this:

The speech teacher called Wed's, from Bre's school. She's at a lost

as

to

what to do with Bre as far as her speech is concerned! She has done

everything

she knows to do for her and you still can barely understand her!

(She's

five now.) She has been diagnosed with Dyspraxia of speech and fine

motor

skills. The teacher told us of this Dr. in Ann Arbor, Michigan

that

does

evaluations on cases like Bre's and Maybe could tell the teacher what

else

she can help Bre do to learn to talk. She will take Bre their herself

as

long as we can pay for it, as it is expensive. Well Daddy contacted

the

pediatrician

and she gave the referall that we needed for the insurance to

pay

for this Dr's. appointment, as she has heard of this Dr. herself and said

that

this is about the only one left that will know which way to turn

with

Bre.

WELLLLL w! e get a return call from the nurse at our pediatricians

office

that we can't take Bre until we take her to see a pediatric

neurologist

to rule out any other problems. That's fine! But we can't get

her

in until the end of Feb.!!!!! Then it will take us a couple of months

to

get

her into this other specialist, then school will be out!!!!!

ARGGGG

Bre

is in preschool for the second year, only because she can't speak!

I

have

already asked them if she can still go into kindergarten this next

school

year, as she knows everything it takes to go!!! My answer from

them!!!!

Not unless she can speak!!! This makes no sense to me, as if she

never

speaks, is she not allowed an education??? What happened to sign

language???

But, I was told if she can't make the sounds with her voice she

will

not be able to go to the next grade!!!

On Top of All This:

Saedi woke up last night vomitting and coughing!! Today there was

no

school

because we got 8 inches of snow last night! And she looks like she

is

getting

larangitis(sp) she can barely speak!

This is how my week

has

gone so far... I have a major headache with all

these storms going

through

I still have a fever in my mouth where he pulled my tooth. I still

can't

chew on the other side as it is more sensitive now than it was before.

And

my other tooth that is now giving the fhantom toothaches is right above

the

one he filled and I can't stand any thing hot or cold on it, no air, and

there

is nothing wrong with it!!!! Helloooo it HURTS!!!

Now I'm tired!!!! it's 2:30 in the morning and I have to be back up

at

7am to get whoever is well enough, ready for school.

Blessings to all,

Tomorrow

Promises to be Brighter!!!!! ( Ice storm coming in!!!)

Lots of Hugs to you All

Helen

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December 18, 2000

Hi Helen *hugsssss*

"I've just had a bummer of a week is all."

Well bugger it, thats just not allowed!!!! No bad weeks for anyone anymore.... Wish I could do that

"Went to the headache neurologist on Tues. He can't do anything more for the headaches that have returned until they get this mess with my heart staightened out. As a lot of the medicine he would presrcibe can not be taken by heart patients he said. "

Maybe the headaches are being caused from the heart problem hon? Oh its so scary!!!

"Wednesday I seen my regular doctor, he doesn't like the idea I have to wait so long to get in to see my cardiologist, so he ordered a heart monitor to be worn for the next two weeks to find out what is causing the aahythmia, and which type it is. So I go in tomorrow and get that hooked up."

Are you hooked up now? How is it? Does it hurt? What have they done to you? How you coping hon?

"My blood pressure keeps going up for no reason that I can figure out. I take my meds everyday for it."

Stress?

How are things with Bre? Sounds like a nightmare. Education department in Aussie is a nightmare so sure yours must be also.

"The teacher told us of this Dr. in Ann Arbor, Michigan that does evaluations on cases like Bre's"

Are you going to see this Dr?

"I have already asked them if she can still go into kindergarten this next school year, as she knows everything it takes to go!!! My answer from them!!!! Not unless she can speak!!! This makes no sense to me, as if she never speaks, is she not allowed an education??? What happened to sign language??? But, I was told if she can't make the sounds with her voice she will not be able to go to the next grade!!!"

Home schooling an option?

"Saedi woke up last night vomitting and coughing!!"

*ugh* Is she better now?

How is your tooth from the dentist visit from hell? How are you doing in general? You sound like you are all in the wars... hope things get better for you and that you are not overdoing it!!

*huge teddy bear hugs to you*

Much love to you

Aisha

December 18, 2000

I have worked with elderly people who get the speech problems that are related to swallowing/breathing/chewing. They get special evaluations and special therapy. It really works!! The older people cannot really follow directions too well and are similar to children, in that way. I wonder if they can do something similar for little ones???

Lee

Hyten <whyten@...> wrote: I ran into this same problem with Gracie...she has swallowing/breathing/chewing issues that are affecting her speech. She has a forward swallow, which is messing up the whole structure of her mouth. And of course, the therapists are now telling me that they have no idea how to help one as young as Gracie is with this problem. They know how to help older kids, ones that can imitate tongue movements and follow direction better than Gracie can, but they have never helped a younger child. So they want to do nothing about it until she's older and they feel like they "know" how to fix the problem. I said, so what?? You're not going to do anything at all?? You're just going to let it keep getting worse until she's 5 or 6 years old and we still can't understand half of what she says?? I don't think so!! LOL

December 20, 2000

Lee,

I don't know, hon. All they have told me is that they can't

teach her to quit forward swallowing until she gains some kind of control

over her tongue, and mouth muscles, and she can follow directions when

they tell her to "put your tongue here" or "push your tongue on the roof

of your mouth"...right now, she can't do either of those things. I sure

wish they would do something though!! Thanks for the input hon!

*hugs*

l harris wrote:

I have worked with elderly people who get the speech problems that are

related to swallowing/breathing/chewing. They get special evaluations and

special therapy. It really works!! The older people cannot really follow

directions too well and are similar to children, in that way. I wonder

if they can do something similar for little ones???

Lee

Hyten <whyten@...> wrote: I ran

into this same problem with Gracie...she has swallowing/breathing/chewing