RE: Re: LPA?

[Guest guest]

Thank you, enjoy Jimmy!

I know my question was short and if you guys can indulge me I have

another question.

Karl and I have said when people ask us what RSS is that it's a form of

DWARFISM..

Are we totally WRONG in saying that? I am wondering since no one on

here uses that term (don't flame me, I am NEW to this still)

We want to be PC (I mean we know how to handle situations in a mixed

race family and with a child who has autism.what is our prob here?)

THANK YOU!

Re: LPA?

,

I'm on bedrest after foot surgery and taking Percocet, so if I sound

kind of incoherent, please excuse me. I thought I was doing well

until my mom called and told me that sometimes I just sound strange

and out of it. And to think I thought I had it altogether.... I'm

not perfect after all!

When Max was a baby and we were just getting used to the idea of

RSS, we joined LPA. We were fortunate that one of their medical

directors, Dr. , was in practice about two hours from

here and we had sought his advice while trying to get a diagnosis.

(He said RSS from the beginning.) Then it turned out that the local

chapter's leader was in the next town over and she had a son who was

Max's age, but he had achondroplasia. My husband and I decided that

it was in the cards that we should join, so we did. I received the

newsletters, saw the pictures and tried my best to find a family

that we could relate to. But that did not happen.

LPA is really for people who are very short-statured and need

adaptive technology and appliances and everyday hints to get along

in a world that is not at their level - physically. Its membership

is for people who are under 4'11 " . With RSS, our kids do qualify,

but once they are on gh, most pass that limit and are considered in

the more average range of height.

The people there are VERY nice and helpful. But there was no

support for us, so we stopped being members. We did not see the

advantage for ourselves or Max. In fact, we were worried because so

many of the people we had met were not proportionate and needed so

many adaptive devices and we did not want Max to see himself that

way. (I hope this does not sound bad. I don't mean it to be mean.

They just had different needs than Max. Remember, it could be the

Percocet that keeps me from finding the right words to convey my

feelings.)

Do I think you should join? Why not? You may find someone or

several people who are very helpful and have a lot to offer you and

Lee Ann. If you eventually feel that it is not for you, well,

nothing is lost except a small membership fee. It's one of those

things that I think people should try - it adds to the list of doing

everything you can to educate yourself and help your daughter.

Now, Jimmy Buffet is on Ellen and he is singing Margaritaville. I'm

going to sit back and enjoy.

Jodi Z