Another question re: telling kids about RSS

[Guest guest]

At what age did you start to explain to your child about RSS and

what it means? We are going to the conference again this summer and

I'm not sure how to explain it to him. Also, Colin is a twin and the

size difference has really increased lately since he hasn't gained

weight (and not much height) and his twin sister is 90%ile for

height. I hear her telling him " I'm bigger than you " all the time

and it makes me so sad for him.

Thanks,

Colin (RSS) and Hayden - 3-1/2

Grant - 5 mo.

[Guest guest]

Hi ,

We haven't explained RSS to Olivia yet (4.5 yrs) but we have a

running dialog with friends/family/strangers who always comment on

her size. Once they make a comment I say, " Olivia's tiny but she's

4 and gets to do 4 year old stuff. " It's worked wonders for Olivia

and now we rarely have to say it because she jumps right in and says

it for herself. We will be telling her about it this summer though,

before kindergarten starts. The psycologist (sp) said it would be

better for Olivia if we made her the " expert " on RSS. On the first

or second day of school I'll come in for circle time and Olivia

(with my help) will tell all the kids what RSS is, why she's small,

why she needs extra snacks, etc. and that she can do everything just

like they can. The psycologist said this wasn't so much for the

kids as they're still very accepting at that age but more so for the

parents who invariably will barage their kids with a host of

questions after school. Then these kids are also mini experts and

hopefully there will be more RSS education out there!

Her selfesteem also seems improved since we started agreeing with

her when she says stuff like my feet/hands are small. We used to

say, no your hands are big! But you know what? they're not!! We

don't want her to think that there's anything wrong with being small

so now we agree and go right into the routine... " but you're 4 and

get to do 4 year old stuff "

Hope this might help, it works well for us.

Leah, mom to Ash 9 and Olivia 4.5, RSS, OI, 19lbs, 33 "

> At what age did you start to explain to your child about RSS and

> what it means? We are going to the conference again this summer

and

> I'm not sure how to explain it to him. Also, Colin is a twin and

the

> size difference has really increased lately since he hasn't gained

> weight (and not much height) and his twin sister is 90%ile for

> height. I hear her telling him " I'm bigger than you " all the time

> and it makes me so sad for him.

>

> Thanks,

>

> Colin (RSS) and Hayden - 3-1/2

> Grant - 5 mo.

[Guest guest]

,

Most parents have a tendency to tell their kids too much when all

the kids want is a short, quick answer - just enough for their minds

to comprehend.

That being said, you have a great opening for Colin. You just have

to sit down and ask him if he ever wondered why Hayden is taller

than he is. Whatever his response, you can say that he has

something called -Silver Syndrome which means he has a harder

time growing than other kids. Leave it at that unless he asks

more. Keep it simple when you answer his questions or respond to

his statements. If you don't make a big deal out of it, then he

won't either. Once you have given it a name, however, that will

free you up to use it more and more and he will just let it become

part of his life. The last thing you want is for him to think there

is something " wrong " with him.

I hope this helps and is as clear as I intended it to be. Just

remember, most kids are happy with just a little info. They don't

want the book, just the story.

Jodi

[Guest guest]

We have always simply said that has a growth disorder called

Silver Syndrome, which means that without extra food and

without extra hormones via the shots, she won't grow very well in

weight or height. Her younger brother was always bigger than her

until this past year or so.

at age 8 is very open about it, and has no problem telling

people she has " RSS " . She often will ask things like if I am on the

phone with a mom " does her child have RSS too? " and things like that.

By explaining it openly, it allows the validity to be in the open --

YES, you are shorter and thinner, and it isn't your fault. And

there are other kids just like you!!!

Other parents do not ascribe to this belief about openness. One mom

whom I adore says that her daughter acts as if everything is fine,

and she is doing great in school, and she doesn't want her to worry

or anything. So they don't say anything (although I do think they

now say she has a growth disorder, they just don't use a name).

The studies I have read seem to show that openness and honesty is

best. As your child hits their teenage years, they may change their

mind and not want ANYONE to know, but day by day for now.....

The bottom line is that it is clear to your child, their sibling and

everyone else that something is affecting their height. There is no

reason to pretend otherwise, ya know> Kids are so smart!!!!

Jenn

> At what age did you start to explain to your child about RSS and

> what it means? We are going to the conference again this summer

and

> I'm not sure how to explain it to him. Also, Colin is a twin and

the

> size difference has really increased lately since he hasn't gained

> weight (and not much height) and his twin sister is 90%ile for

> height. I hear her telling him " I'm bigger than you " all the time

> and it makes me so sad for him.

>

> Thanks,

>

> Colin (RSS) and Hayden - 3-1/2

> Grant - 5 mo.

[Guest guest]

,

Storm was about 4 when we told him about RSS. He was noticing that

the other kids in Pre-K that were 3 were bigger than he was. He

didn't understand how they could be 3 and he was 4 and they were

bigger! So I just said to him that he was born extra special and that

he couldn't grow as much as other kids. He asked what caused it, and

I told him it was called Silver Syndrome, but he could call

it RSS, and that all it meant was that he just couldn't grow as tall

as the other kids, but that he could still do everything else they

did. He asked if there were any other kids with RSS like him, and I

told him about other kids and MAGIC, and that he would get to meet

them later that year.

He didn't believe that there were other kids when I told him. It took

going to the convention that year for him to believe me. Now he loves

the convention, because that weekend, he is " normal " instead of

different! What a blessing it is to have a few days of normal every

year!

Anyhow, I guess I pretty much waited until he asked, and then I just

broke it down so he could understand it and told him the truth!

I hope this helps,

Blessings,

Carmen, Mom to Storm, age 8y 9m, 52 pounds, 48 inches

[Guest guest]

,

I have told Owen since he was about 3 that he had a growth disorder

and that his bones dont grow as fast as some of the other

children..or as fast as his older brothers. I think the younger we

tell them and explain it to their level the better. Owen is now 5

and knows he has a growth disorder that makes his bones grow slow...

that is how he explains it. I just keep telling him that because he

is smaller that he can run faster and do stuff his friends cant cuz

they are just to big..he really likes that.

The cutest thing he ever said to me was one day he had a watch on and

he was able to put it on one of his wrist without untying it because

he is assymetrical. He asked me to put it on my wrist without

untying it..but of course i couldnt so he said..to bad your not like

me hey mom... cuz its cool to have one arm smaller than the other..i

almost cried..lol

owen,, rss 5 1/2 26 lbs, 37 inches, assymetrical

> At what age did you start to explain to your child about RSS and

> what it means? We are going to the conference again this summer and

> I'm not sure how to explain it to him. Also, Colin is a twin and

the

> size difference has really increased lately since he hasn't gained

> weight (and not much height) and his twin sister is 90%ile for

> height. I hear her telling him " I'm bigger than you " all the time

> and it makes me so sad for him.

>

> Thanks,

>

> Colin (RSS) and Hayden - 3-1/2

> Grant - 5 mo.