Re: Little comments

[Guest guest]

Hi

I think this is something we all have dealt with and believe me I do

it in many different ways.

I think I learnt early on that children only say things inocently

and I was quite willing to explain that Liam has a little face and

body not a big head. We dont see Liam as anything but normal, in

fact Liam had an early intervention teacher who came to the beach

with us one day and couldnt believe the stares and questions we got

from people mainly because he is so small and had all the kids on

the beach ordered around(thats RSS kids for you) but when you know

him you just dont see the physical things.

Saying all that somedays life just gets to hard,I was in the middle

of moving house and Liam had not been well and my worst moment was

when an 8 yr old boy had Liam bailed up after school showing 3 other

kids Camerons brother with the big head. I told Liam to come away

and this kid asked me very loudly why he had a big head.I got very

close to the boy and said 'why do you have a big nose?' the bravo

went out of him very quickly as he said he didnt, I said 'Oh really?'

There was nothing wrong with the kids nose and Im guessing he went

home and examined it for a while. And I still feel really bad for

coming down to the level of the school yard bully.

Some days you cope and others you dont, but in 4.5 years Liam has

always coped, thats what gets me threw sometimes, I just know he

will deal with it probably better than me

Have a good day, I will try not to pick on anyone younger than me

Jody(mum to Liam RSS and Cameron)

>

> Greetings everyone....

>

> I would like to wish everyone a happy new year.. I know it's not a

happy

> new year for several, but hold on the hope that it will get better.

>

> I had an exerience yesterday that I wanted to share.

> A girl friend oand I took our oldest daughters out to play and her

> daughter who is 4 made a comment about my who has RSS. Her

> daughter blurted out, " She's such a cute alien baby! " The comment

didn't

> bother me at first.. in fact I laughed! My friend almost scolded

her

> daughter for saying that... but I told her not to worry. I like

kids

> being so honest. But her comment got me thinking..... Does

everyone

> think this about my daughter? Am I blind to the way she really

looks?

> How do ya'll handle comments like this?

>

> is still a happy, healthy RSS baby. She's almost 7 months

old and

> not rolling over and not really playing with toys. I have been

looking

> at the doctors milestone charts and is way off. I know there

is

> some delay in the development of RSS kids... Is there a chart to

show

> when they should be doing diffrent things?

>

> Again I want to wish everyone a happy new year.... Y'all are great!

>

> Pickett

>

> >

> >

> >

>

[Guest guest]

,

I'd like to say that the comments go away, but I'm afraid they

don't. Kids have this natural tendency to hone in on those who

look, act, dress differently and it's really hard to deal with -

especially when we know that our kids already have " something " that

makes them unusual in so many ways.

When Max was 2.5 months old, he had bright red hair, green eyes and

pointy ears. He was in the hospital for failure to thrive for more

than 3 weeks. I remember dressing him in a green jumpsuit and I

thought it looked so good on him with his red hair. The nurses

began to refer to Max as the little leprechaun. Needless to say, he

never wore green in that hospital or for a long time after.

Max still has pointy ears, especially his right one. It's difficult

to hide with a boy unless he has dreadlocks or something and Max

won't go that route for sure. Every once in awhile someone will

point them out, and he just lets it go. He's heard it for so many

years that he is more or less accustomed to it, or as well as he can

be.

The biggest problem we run into now is that people do not believe

that he is 17. A year ago, before he shot up 5 " , he really looked

small. Even now, he is small compared to the other 17 year olds in

his school, but he is the second tallest in this house, so he is

happy about that. (And if the size of his feet are any indication,

he is still growing!) His features are young-looking and it does

get to him. He hates being challenged. And other kids do that.

Not really at his school because he doesn't bother anyone and has

his own group of friends there, but out in public it happens. And

adults can be really crass. Why do they have to comment on his

age/size/looks? They just blurt it out.

The good news is that you will, and I promise this, you WILL become

hardened to this and just take it as part of your life. It will

take a LONG time, however. It's taken me probably 15 years. I

think it helped when Max found his own voice and was able to talk up

for himself and let the comments roll off his back a bit.

Every single person in this world has his/her own, individual

features. If we looked the same, we would be rather boring. Out of

their own insecurities, others tend to point out those who look a

little more " different " just to make themselves feel better. Yes, a

4 year old girl can, too. It is not out of malice, most of the

time, anyway.

Just enjoy your precious little girl. Know that we have all been

there and we are in this together. It sure does feel lonely at

times, but it's so true. I don't know how I would be dealing with

some of the issues that I do if I did not have all of you. And I

hope you learn to feel the same.

Jodi Z

[Guest guest]

Hi .

My son didn't start doing alot of these things until just recently and now

he's just taking off!

I'm a firm believer that all kids will do things in their own time. Brockton

didn't sit up on his own until he was 13 mo. old. He STILL doesn't bring

himself to a sitting positioin from a lying position. He rolls over to his

belly and then pulls himself up. Seems like the hardest way possible to me!

I know it's scary. You just don't know what to expect. You feel like she's

so far behind but,SHE WILL DO IT! She's little. It's WORK for her. All

these things that just come naturally to so many other kids are work for our RSS

kids. She is so beautiful!!!

We get comments on Brockton's size all the time.................and his ears.

Perfect strangers feel comfortable saying things like..... " He's so tiny! I hope

he grows into those ears! " My reply is..... " We think he's perfect. Ears and

all! " Sometimes I'd like to say something like.... " He's got big ears and you've

got a HUGE mouth. " ........but I contain myself. LOL

Do you have Early Childhood Intervention available where you are? You should

look into it right away. DEMAND it if it's available. Brocktons therapists

have been wonderful and instrumental in his rapid development. Take advantage

of the help that is available to you. It's SO WORTH IT!

Keep us updated.

Jeanie (mom to Brockton, 16 mo., RSS and , 18)

wrote:

Greetings everyone....

I would like to wish everyone a happy new year.. I know it's not a happy

new year for several, but hold on the hope that it will get better.

I had an exerience yesterday that I wanted to share.

A girl friend oand I took our oldest daughters out to play and her

daughter who is 4 made a comment about my who has RSS. Her

daughter blurted out, " She's such a cute alien baby! " The comment didn't

bother me at first.. in fact I laughed! My friend almost scolded her

daughter for saying that... but I told her not to worry. I like kids

being so honest. But her comment got me thinking..... Does everyone

think this about my daughter? Am I blind to the way she really looks?

How do ya'll handle comments like this?

is still a happy, healthy RSS baby. She's almost 7 months old and

not rolling over and not really playing with toys. I have been looking

at the doctors milestone charts and is way off. I know there is

some delay in the development of RSS kids... Is there a chart to show

when they should be doing diffrent things?

Again I want to wish everyone a happy new year.... Y'all are great!

Pickett

>

>

>

[Guest guest]

Xander said something to one of his friends once that I was

incredibly shocked about. His friends mom was okay with it - but,

it's amazing what our young ones come up with. Although, it can't

be as bad as the time I asked a woman when she was due - and she

told me she had the baby 2 weeks ago! Insert foot in mouth. I

never talk to woman (unless their my friends) about their

pregnancies any more!

- H

> >

> > Greetings everyone....

> >

> > I would like to wish everyone a happy new year.. I know it's not

a

> happy

> > new year for several, but hold on the hope that it will get

better.

> >

> > I had an exerience yesterday that I wanted to share.

> > A girl friend oand I took our oldest daughters out to play and

her

> > daughter who is 4 made a comment about my who has RSS. Her

> > daughter blurted out, " She's such a cute alien baby! " The

comment

> didn't

> > bother me at first.. in fact I laughed! My friend almost scolded

> her

> > daughter for saying that... but I told her not to worry. I like

> kids

> > being so honest. But her comment got me thinking..... Does

> everyone

> > think this about my daughter? Am I blind to the way she really

> looks?

> > How do ya'll handle comments like this?

> >

> > is still a happy, healthy RSS baby. She's almost 7 months

> old and

> > not rolling over and not really playing with toys. I have been

> looking

> > at the doctors milestone charts and is way off. I know

there

> is

> > some delay in the development of RSS kids... Is there a chart to

> show

> > when they should be doing diffrent things?

> >

> > Again I want to wish everyone a happy new year.... Y'all are

great!

> >

> > Pickett

> >

> > >

> > >

> > >

> >

>

>

>

>

>

>

>

>

[Guest guest]

, , and all,

Okay, girls. I just had to reply. First, had a big

head....well, still does, but man was it much more noticeable at

birth and the few months after. Especially when he didn't have

hair. I have a Christmas picture of my two boys when the were 2 and

7 months. Adorable and it is my favorite picture. I need to post it

in 's folder. Anyway, 's head was so misshapen and

looked " alien-like " . It was to the point were he almost needed a

helmet to shape it, but we didn't do it. So, I can relate to what

you are saying.

And, , I too, have ears that stick out and have been teased

about them. I was very self conscious about it and couldn't wear my

hair back much because of it. but, now I don't care and my hair is

long, and thick now, so I pull it back ALL the time, especially in

the evening when I am so busy. I say, screw what other people

think. They'll get over it and I don't care anymore! ;o)

Jodi R.

>

> I am not on too often these days, but I wanted to say that when

Jonah was first born, a little girl in Kindergarten blurted out the

same thing about Jonah looking like an alien and I almost cried, I

think I did later on. I still don't like hearing it, but I know now

that it is ok and that he is the cutest think ever!! As Jonah has

gotten older and gained some weight, he does not look so out of

proportion. I think that when they don't have clothes on, that makes

a difference too.

> Anyway, I just wanted to say that it took me years to wear my hair

behind my ears because I was teased so much because my ears are big

and pointy and I don't have ROSS. I kind of grew into them, but they

are still big. People think Jonah has my ears. I was called Dr.

Spock...I survived that and it has not affected my life. Rest assured

and keep reminded your children how beautiful they are.

> , Jonah's mom

>

>

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