why all the hostility??

[Guest guest]

I just had to wonder after reading the last three digests.why so

hostile???

First of all, there is no cure all. There is never going to be any ONE

THING that will make apraxia, autism or whatever just go away and be all

better. That being said, therapies are a huge part of our everyday life

(and I'm pretty sure I speak for the majority here!) On top of that are

the supplements and any other interventions that seem to work well for

your child. Some people just emphasize different things in their chosen

path of treatment for their child. It is a MIX! And one that we are

always changing/modifying the recipe for. There is no cure for apraxia

OR autism. And yes, both of these disorders have quite a bit of

crossover - both in symptoms and treatments. This is not about labeling

or competing about which treatment is best. It is about trying to

recover our kids, our BABIES! from horrible symptoms they have been

cursed with. I love the support and ideas I get from this group. I

hope we never decide to turn our backs on progress and fresh hope!!

However, not every idea works for everyone. But how else would you

hear about some of these things?? We are a sounding board, among other

things.

P.S. If anyone ever has a question about acronyms, etc. JUST ASK! I

had to do it all the time on my biomedical list when I first joined.

But you learn, and for the veterans on the list it is mundane and just

unnecessary to write out the full words all the time. On that note,

DAN! Stands for Defeat Autism Now! And yes, the exclamation point is

part of the organization's name. Personally, I think it should have

about a hundred !!!!!!!!!!

Regards,

Cheryl Butterworth

Collin's Mama

cheryl@...

[Guest guest]

Hey that's just what I was thinking. :-) Some of the discussions on some

autism groups get a little hostile from time to time as well, but deep down

we all know that what works for one child may not work for another. The one

thing that helps Suzy Sunshine's child may not help Joe Shmo's. Apraxia and

Autism are very alike in two aspects. There is no clear cut, 100% proven

cause for either and there is no cure. To me that makes discussion of

anything that helps either disorder worth talking about.

Until Hope was diagnosed with Apraxia and I found this group, I had no idea

what EFA's were or that they MIGHT help until someone brought it up. Then I

got a copy of The Late Talker, searched through the archives for messages,

did some internet research on it, and then called Hope's doctor's to ask

about it. When we started EFA's we did see some improvement. Not to the

extent that some people did, but some.

Then back in May 2004 Hope was diagnosed as autistic. Yes she's one of the

kids who has both, a double whammy of sorts. All of a sudden doors opened

to therapy and treatments that werent even considered before and between our

private insurance and Hope's medicaid, someone was always willing to pay for

it. It was a compete turn around. In April 2004 we did get Hope some

speech therapy approved through the insurance companies, but they were still

relucatant. Once we had the autism diagnosis in May it was like they were

talking about a completely different child and were ready to pay for

however much speech, OT, and PT as was recommended.

Do we do biomed treatments as well? Sure. Hope is still on ProEFA and she's

on digestive enzymes along with a gluten free diet. Have they helped? We

still see a little progess. The gluten free diet is because she was

diagnosed with celiac as well. The most progress we've seen is when we got

her involved with a behavioral specialist (BSC) and therapudic support staff

(TSS). They started ABA therapy with some descrete trials, started her with

PECS. At her preschool they've been writing letters and reading short

books, and something just clicked. She's talking up a storm now, and other

people can understand the majority of what she's saying.

But everything that we're doing with her I found out about on groups like

this one. I'd hear someone talking about they did it and it worked for

thier child, so I'd do research and talk to her doctors and therapists about

it. Sometimes they say in her case they dont think it's appropriate or

she's already beyond that point, in others they say why not if it doesnt

work we can try something else later.

Now Hope is 4 1/2, she's still not potty trained but she's getting there

slowly. From the day she was born I was waiting for the day she would run

up, give me a big hug and say " hi mommy " . But it got to be pretty clear

that wasnt happening. She didnt talk and she certainly didnt run up and hug

people. She always did her own thing and preferred being on her own. Now

she's doing it. She's running over to people she knows, saying hi, hugging

them, and wanting to tell them something about her day, something she did,

or something that she thinks is funny. She still has a long way to go and

some of the things she does you can tell that something isn't quite " normal "

with her. But it's less noticeable and her speech is to the point now where

people just assume she has a hearing problem, especially when she starts

visually stimming on something and I have to literally yell her name to get

her attention. Do I still pay attention when people talk about what helped

their kids? Oh you bet I do.

Toni