Re: First encounter with ignorance...VENT..Long-Dwarfism

[Guest guest]

and all

Explanation of my child's size is even harder for me becuase my

daughter has no official diangosis. So if I say the doctors cant

figure out why she is small I sometimes get the look as if I am

trying to hide whats wrong with my daughter. In terms of size my

daughter qualifies as having dwarfism (25.5 inches at 16 lbs at

almost 2), and although for she is not achondroplasia I feel bad

trying to avoid the term " dwarfism " because does that mean if she had

achondroplasia I would be uncomfortable (or worse, unaccepting) with

who she is? Do we need to avoid the term " dwarfism " because of the

negative perception, instead of trying to establish there is nothing

negative about being a dwarf or little person? Parents of

achondroplasia children get in similar if not more frequent negative

encounters compared to RSS/SGA parents, and they dont have the option

of avoiding the term " dwarfism, " but I am sure most handle it just as

well.

Personally, my husband is also very sensitive about this. Locally I

do not know any RSS/SGA/undiagnozed types, but I have come to know a

few families with the common type dwarfisms. The local chapter of LPA

is having a halloween party this weekend, and I thought it would be

good to start exposing my daughter to other small-statured children.

But my husband is dead set against attending these events because he

says our daughter does not fit with them.

This is one reason I am thankful that I had Naomi, otherwise I might

beone of those people who pity the parents of any child with a

difference.

Sabina mother of Naomi

> >

> > Hi All-

> >

> > We took Isaac on his first road trip to visit my father-in -laws

> > family in corpus christi(about 6 hours from where I live). All of

> his

> > brothers and sisters and his mother live there. Isaac did great

in

> > the car and we were having a great time visiting with everyone

> since

> > none of that side of the family had seen Isaac (only in

pictures).

> > Isaac is also " carrying on the Garza name " which is a big deal to

> > Art's side of the family. Anyway, we are all over at Art's

> > grandmother's house chatting with realatives and as I am sitting

> > there holding Isaac and Art's aunt starts asking questions and

> > talking about how " small he is " . I explained RSS and told her it

> was

> > a type of dwarfisim. Do you know what she said... " Oh so he is

> going

> > to be a midget, that's cool he can go work in the circus " . Since

> it

> > was a family gathering and I didn't want to make a scene I bit my

> > tounge but I could feel the anger swell in my throat. It is one

> thing

> > for strangers to make comments like that but family members? I

> > couldn't believe it! To make matters worse she has a son with

> Prader

> > Willi Syndrome so you would think she would be a little more

> > sensitive!!

> >

> > Besides that..the rest of the trip was great and Isaac was an

> awesome

> > traveller considering the 6 hour drive!

> >

> > Thanks for listening!

> >

> > Mimi

> > (mom to Isaac RSS, Hypothyroidism, 9 mos 12lbs 5 oz, 24 1/2 " )

[Guest guest]

I too do not use the term dwarfism to most. It is not because I am

ashamed or because I have negative feelings towards anyone who has

achondroplasia. It is just sipmly not an accurate picture of Coby.

Because achondroplasia is the most visual form of dwarfism that is

what people imagine as you explain your child to them.

Just my 2 cents.

le

[Guest guest]

I have sent an e-mail to the local chapter of LPA to see if they have

a parents group or anything and have not received a response. I sent

the e-mail about 2 weeks ago and have given up. Would it be better to

contact the national organization? I have also contacted arc about a

local group for parents with " special needs " kids but they haven't

sent me anything and it has been 2 months!! I love having this

listserve but I would really like something local also..sure would be

nice to have coffee with a mom that knows what we go through! I

dosen't even have to be RSS, a parent of a child with any type of

growth delay or small statured would be able to relate!!

I am still working on finding a contact somehow!!

Thanks,

Mimi

[Guest guest]

Hi Mimi,

I grew up in LPA, and with that organization, it sort of depends on where you

live. Some local chapters are much more active than others. Where do you

live? Also, I would try and make sure the contact info. you have is up to

date, because LPA is a volunteer organization and tends to have a lot of

turn-over. Also, a lot of the local chapters have websites where they keep

updated info. on gatherings and such. Let me know if I can help direct you to

the right place...I'd be happy to assist you in any way I can.

~Hillary

22, RSS