Re: new baby

[Guest guest]

Cheryl,

I have been wondering if you all where doing okay....I have not seen you post

in awhile. I know, those triplets keep you busy...

Hope all in well.....You and have been in my thoughts.

..Shelby's mommy almost 4 with RSS....Periactin....21-22 lbs

[Guest guest]

,

We went throught the same thing when was born. His older brother

is unaffected & we had all the same concerns as you did. We told the people

who would listen (there will always be at elast one family member who knows

better) I even went as far as to print up info for some family, day care,

PT, and doctors who were unfamiliar with RSS. This worked well for us. I

also kept an extra packet of info including growth charts for ER visits.

This took a great deal of pressure off us at stressful times. Others will

follow your lead, we do everything possible not to treat Josh like the " sick

kid. " He is now 18 mons old & his brother will be 4 in three weeks, even

when they wrestle around or fight I try to let Josh handle it before I

intervene. This is not easy because of his size but he really handles

himself well! I of course step in when things get to rough. I know you

have a long way to go but even your older boy will follow your lead. Good

luck!!

[Guest guest]

Hi

I saved your letter to a time when I needed to get off my own problems and go

back to what makes me feel good......helping others.

My son Adam (8 years old in a month) is the size of a 3-31/2 year old. I have

had years of advice from well meaning friends (mostly the babysitter--I'll just

feed him and fatten him up!!)--like I don't??

But my course of action--I get asked daily for, it seems, ever-- " he's so

cute--how old is he? " That always comes first--because the physical dexterity

and the language coming out of this kid seems to throw everyone for a loop when

they assume he's 3. I use to enjoy freaking out other parents in the doctor's

office....the minute Adam started with full dialogue and sentences etc.

and he looked exactly like their two year olds (and he was 5) I would just smile

to myself as their faces hit the floor.

But for those who ask.....I find this works:

" This is Adam. He is almost 8 years old and is now in Grade 3. He's such a smart

wonderful kid (of course Adam is hearing this exchange too) but he is small for

his age. He seems to have a difficulty with growth and no one knows why. " That

shuts them up. Probably moreinformation than others here will tell you that they

give....but I am acknowledging Adam for exactly what he is. It

may sound slightly cruel (we certainly don't harp on it---but he knows he is

" different " but if he hears me say it in a " that's life " voice--I find he's OK

with it). I've even overheard him using the exact same words with his peers

(while I remain in the background wanting to chew their heads off for grilling

him--you can't be 8 etc. etc.)

Sometimes if I am feeling particularly chatty or I am not in a rush I will

elaborate further... " oh it's been such a struggle trying to find out the

difficulty (usually Adam has moved off by now) and you have know idea what it is

like..... " OK I've never got much further than that and I scare them off. I'm

sure these people are thinking " my God she's going to tell her whole life

story " .

It just depends on my mood. We have nothing to hide. Adam is what Adam is. The

explanation is simple. And I find most people are very quick to understand and

then the discussion is dropped. It's as if telling the whole truth (as opposed

to a quickie come back) gives them some dignity in a situation they probably

shouldn't have been into in the first place and everyone is relieved

to save face.

Again, it may not work for everyone. And some here, may really disagree with my

way of coping but it works for Adam and I. And it must or he wouldn't be using

the same lines with his friends.

Also when people find out its " just one of those things " that has no reason or

cure--it just happened and maybe some day he will grow--I think easies anyone

from thinking they " may catch " something.

Just my two cents on an especially rotten night. I thank you for your

letter...gave me some time to think of others again.

Debby

PS now that I've written this long thing.....I realize you have a baby. The

stories could go the same with some slight alterations on your part. Still I

find the quick, honest answer is the best for everyone. Saves all from

embarressment. It will happen all the time......and the way I try to look at

it....it gives me a chance to " brag " about my wonderful son to anyone and

everyone!!

Dane Garis wrote:

>

> I have a six-week old just diagnosed. I was wondering how to handled the

questions from neighbors and friends about his health. I was worried that he's

going to be labled, that's the kid with the disease, but the brother's normal.

Of course we want him to know that he's no different than anybody else, but

obviously we're going to get the questions soon enough about his size.

>

> Should I just say his health is fine but he's going to be small , no big deal

or say nothing at all about his size.

>

> Any advice about anything would be appreciated.

>

> in California

>

>

[Guest guest]

Hi ,

I have 2-1/2 year old triplets, 2 boys and a girl. My son, , has RSS.

He's 19.4 lbs. and his siblings are 37 and 42. People ask me all the time if

they're triplets. I say, yes. Then they say, but he's so small -- Are they

triplets? Then I say, yes AGAIN. Then they say, but he's so small. The

conservation will go like this for a while and I know they're wondering Why

is he so small, but I figure if I ain't ever going to see them again, I'm not

wasting my time answering. Now, on the other hand, people that know us know why

he's so small because I've taken the time to slightly educate them. The easiest

way I find in answering questions when you want to be truthful but not open up a

can of worms is just to say he's a little small, but he's

fine. End of discussion.

Hope this helps!

Cheryl

Mom to , , and - all 2-1/2

Dane Garis wrote:

>

> I have a six-week old just diagnosed. I was wondering how to handled the

questions from neighbors and friends about his health. I was worried that he's

going to be labled, that's the kid with the disease, but the brother's normal.

Of course we want him to know that he's no different than anybody else, but

obviously we're going to get the questions soon enough about his size.

>

> Should I just say his health is fine but he's going to be small , no big deal

or say nothing at all about his size.

>

> Any advice about anything would be appreciated.

>

> in California

>

>

[Guest guest]

Hi Debby and ,

I was always amused when people would get a double take of

speaking, they see this tiny little baby talking like an adult and are

shocked. could talk before he could walk.

Danna

Debbie wrote:

> But my course of action--I get asked daily for, it seems, ever-- " he's so

cute--how old is he? " That always comes first--because the physical

dexterity and the language coming out of this kid seems to throw everyone

for a loop when they assume he's 3. I use to enjoy freaking out other

parents in the doctor's office....the minute Adam started with full dialogue

and sentences etc.

[Guest guest]

Hi -

Here are my two cents. My son is 16 months. He was diagnosed almost

immediately after birth - thank God! It took me a long time to get

comfortable with the questions of others about my son. The good news

is that I have.

First, I think we all have to realize that most people are truly and

sincerely taking interest. Inquiring about a person's child is one

of the nicest things we do for others -- we show interest! When you

have a " normal " child, you LOVE inquiries! When your a parent of a

child with something different, inquiries can make you

uncomfortable. But, recognize it for what it is. WE are

uncomfortable. No need to punish the inquirer.

I use to respond blandly, hoping to avoid further questions. I

sometimes lied about Bay's age to avoid issues altogether. I was

sometimes rude and ALWAYS inappropriately offended. Offended and

concerned that someone might think or judge me a bad parent. All of

this self concern.... Now, I proudly state his age " Actually, he's

16 months " and add -- with a smile -- " he's just small " . If I feel

it will be cathartic for me to add more and I that the person will

respond positively, I do. I've found people to be truly wonderful.

They don't ask more questions. They aren't out to judge. And, they

can be unbelievable supportive! Next time I see them, they'll lavish

over how well he's doing or has grown. They are sincere. It's very

nice.

So, my advise is this. It will get easier as you get more

comfortable with your child's diagnoses. And, people are not out to

hurt or judge you. There is little need to be anything but genuine

in your response. I found stating that he had a growth problem to be

cathartic for me!

When I realized my resistence to inquiries was because I was

concerned of being judged a poor parent, I realized I had an issue to

take up with myself! When I embraced myself as the good and caring

parent that I am -- and we all are -- I was able to be less

threatened by inquiries, respond pleasantly, enjoy random encounters

with strangers taking notice of my son, and meet lots of nice people

to boot!

Okay, so it's not all bliss. Sometimes an inquiry will make me look

more closely at Bay and remind me that he is REALLY small. The

positive thing here is that I forget! Yup! I get use to my little

RSS wonder! I've long since stopped the neurotic daily/weekly and

even monthly weight checks. As long as he is progressing as he

should developmentally and all, I am pleased, life is good, and I

actually FORGET -- AS I THINK I SHOULD!

It's hard to imagine when your child is first diagnosed, that your

RSS child is just small. Not by any means the worse thing to happen

to someone. I do realize some RSS kids have more serious issues, but

for those of us lucky enough to just have small kids - it really

isn't that auful, is it?

And, as for all of those tough medical question... Are they really

that tough? Mind you, I've only had to face two - Periactin and GH.

Maybe I'm lucky -- or foolish -- but neither was tough for me. What

potential negative side effects do I need to worry about?? I

inquired with Dr.s at Children's Hospital in DC, Hopkin's

Hospital in Baltimore, the Magic Foundation, Dr. Harbison in New

York, and all available studies I could locate. Answer -- no known

negative side effects and both drugs in use A LONG time. What is

left to question? --Tough giving your kid a shot everyday? Yeah,

I'm sure it is. So what? Discipline is tough and I don't think

twice about that one either.

So, now your all glad I don't respond more often, eh? Well, I wish

you all lots and lots of luck! Please try to keep it in

prespective. Sometimes reading these entries I feel we make the

issues center around ourselves - how hard it will be for us to give a

shot each day, how hard it is for me to say my child is small, how

hard it is for me to decide, deal, and so on. Let's remember it's

really a lot more about them. Kids first, okay!

>

> >

> > I have a six-week old just diagnosed. I was wondering how to

handled the questions from neighbors and friends about his health. I

was worried that he's going to be labled, that's the kid with the

disease, but the brother's normal. Of course we want him to know

that he's no different than anybody else, but obviously we're going

to get the questions soon enough about his size.

> >

> > Should I just say his health is fine but he's going to be small ,

no big deal or say nothing at all about his size.

> >

> > Any advice about anything would be appreciated.

> >

> > in California

> >

> >

[Guest guest]

Hi !

I have a five month old with RSS and I decided to tell everyone (except for

family and close friends) that she is going to be small because she was

premature. Ultimately it is up to you but it does make it a lot easier.

Amy in Idaho

Mom to daughter Haven Leigh (RSS 5lbs. 5oz. G-Tube Nissen Procedure

A-Symmetry)

new baby

I have a six-week old just diagnosed. I was wondering how to handled the

questions from neighbors and friends about his health. I was worried that

he's going to be labled, that's the kid with the disease, but the brother's

normal. Of course we want him to know that he's no different than anybody

else, but obviously we're going to get the questions soon enough about his

size.

Should I just say his health is fine but he's going to be small , no big

deal or say nothing at all about his size.

Any advice about anything would be appreciated.

in California

[Guest guest]

Danna

Debby again. I think your mother in law and my ex mother in law must be related.

Except she'd never volunteer to take one of her grandchildren (God forbid) she

just doles out the useless advice of " you don't feed him " -- " look he's just

picking at his food " AARRRRRRRGGGG

Families should be more supportive. Then again my mother is in the clouds. " Well

dear, I think he's just going to suprise us all and shoot up to 6 feet literally

over night. "

Like you say.....nice dreams wish it were so easy.

Debby

Danna Payne wrote:

>

> Hi ,

> Welcome to the group! I'm glad you found out about RSS so soon. We

> waited 5 months and others have gone with a DX for much longer. When you

> know what it is, you know better what to do. You will find the best way to

> handle this problem, go with your gut feelings. Most people are just

> curious. They don't realize they are not the only ones that have asked the

> same questions. I've handled questions poorly and I've handled them well.

> A lot of how I handle questions depends on how the questions are asked and

> how I feel at the time. It all goes with the territory. Most inquisitive

> people are just making conversation and don't realize the stress YOU are

> under.

>

> My mother-in-law is the thorn in my side, she has made comment about

> how, if I let stay with her for a week, she could fatten him up. I've

> tried to explain to her that has a medical condition and will always

> be smaller that average. She always says I may be fooled and may

> end-up 6 ft. tall. Ignorance is bliss. In the mean time I deal with the

> everyday care and well being of my family, and thinking, " ya right " hope

> springs eternal.

> This must be my day to vent, sorry for such a long letter. I hope it

> helps just a little bit. If nothing else you know your not alone.

>

> Danna Mom to Carol, and 4 RSS.

>

> new baby

>

> >

> > I have a six-week old just diagnosed. I was wondering how to handled the

> questions from neighbors and friends about his health. I was worried that

> he's going to be labled, that's the kid with the disease, but the brother's

> normal. Of course we want him to know that he's no different than anybody

> else, but obviously we're going to get the questions soon enough about his

> size.

> >

> > Should I just say his health is fine but he's going to be small , no big

> deal or say nothing at all about his size.

> >

> > Any advice about anything would be appreciated.

> >

> > in California

> >

> >

> >