Re: I need advice

[Guest guest]

Debby,

Have you thought about discussing this with Adam, telling him how the growth

problem of these people is different and doesn not responsive to GH, and asking

him whether he would like to attend or not? He may be hearing about it later

from his friends anyway, so it may be best to take a fearless, pre-emptive

approach. Adam sounds like he is getting pretty bold and wise about handling

these remarks - he sounds like a fun kid!

Inga

At 10:37 PM 10/30/2001 -0500, you wrote:

>

> Hi all

> I really need you all to put your thinking caps on and tell me what you think

> about this dilemma I have. I am really at a loss as what to do.

>

> Here in Toronto we have a group that goes from school to school doing

> performances. These adults are dwarfs. Now their performance is to poke fun

> at themselves and at the same time play a game of basketball against the

> school's staff. Think the Harlem Globetrotters. But their message is no

> matter what your size, shape, colour etc. you can do whatever you want.

> Nothing can stop you from fulfilling your dreams if you set your mind to it.

>

> I guess by now you know what my dilemma is. First should Adam see this

> presentation? My concern is that his peers, who have accepted him as

> normal/small kid will now think he's going to grow up to " look like them " .

> And we know he won't.

> Second how will Adam react? They will explain that they had a birth problem

> that has prevented them from growing. Well that's how Adam understands RSS

> but he will NOT be a dwarf as an adult. Will this scare him?

> Finally, I personally don't think I can handle being there and seeing it. I

> hope that doesn't sound unsympathetic to people with disabilities, but my

> heart is fragile and very raw over this. It probably always will be. I'm the

> one who had to leave Dr. H.'s presentation in Chicago because I began to cry.

> I am still in a strange place of acceptance/denial.

>

> So what is best for Adam? What would you do? Don't forget he is only 9.

>

> As an aside, tonight we were at the hair cutter's getting Colette's hair cut.

> Adam, in his typical form, started to talk to another boy there. So the

> conversation goes to " how old are you?'' The kid is 5. The kid asks Adam and

> he says " I'm 9 " . The mother looks at me as if to say " oh come on, he's

> lying " . And I said " no he is 9 " . This woman says to Adam (oh man I was

> mad!!!) " well you certainly are a small kid for 9 " (lucky the scissors were

> not in arms length of me at that point).

> What was neat, was at that point Adam leaned towards me and covered his mouth

> to whisper " mom tell them I have a growth problem and I have to take

> needles " . He gave me permission to explain, obviously without embarrassment

> to him. So I explained, and Adam went into this long explanation of how he

> gets his needles and how he screamed the first time (all with the high

> pitched scream as a demo!!!!) to the point the kid started to move off!!!!

> But I was proud of him, I see that as acceptance and a feeling of OK with

> himself.

>

> So what do I do about this? I spoke to the principal and he said " do you want

> me to cancel? " And I said " oh no, but I'm not too sure at this point if I

> want to be here that day or for Adam to be " and we decided that I would call

> the coordinator to see what exactly their program is. But he hasn't given me

> the number yet.

>

> Please tell me what you think you would do in my situation.

> I would appreciate it. I am really torn on this one.

>

> Thanks in advance

> Debby

>

>

>

[Guest guest]

Hi Debby,

I've had a bit of a think about this and have come up with a few

suggestions.

Firstly echoing s idea about doing some research on the

internet - from what I've heard about Adam - he would relish that!!

I think you are in a really good position being a teacher at the

school - it will be much easier for you than for a regular parent to

really have a say in what happens...

Would it be possible for one of the members of the theatre company,

one of the dwarfs to talk to Adam before hand - they could explain to

Adam first hand about how their condition differs from his.

perhaps at the beginning of the show when they are explaining that

they all have a birth problem that prevented them from growing they

could also explain (without overtly mentioning Adam or RSS) that

their condition was different to other growth disorders because it

could not be treated with medication such as GH or periactin.

I also know that any teacher worth their salt - especially if they

had a child with a growth disorder in their class would do a bit of

work with the class before the show and afterwards - explaining what

it was all about and following up any questions it may have raised.

All the teachers could restate the fact that soem growth disorders

can be treated - ie RSS - and some cannot.

maybe Adam could have an opportunity here to explain to his

classmates the difference between RSS and achrondoplasia.

I also think forewarned is forearmed and that there is a big

difference between Adam being faced with this completely out of the

blue and having to deal with the questions it raises in his

mind...and Adam facing this with heaps of prior knowledge about what

to expect and an understanding of the differences (and similarities -

in that he IS small too at the moment) between his situation and

theirs.

So I KNOW you will do a great job of preparing Adam for this - he is

really lucky that you have the foresight to see the potential problem.

And the fact that the principal suggested canning the whole thing

suggests that you have a supportive staff at your school.

Anyway good luck and do keep us posted.

> Hi all

> I really need you all to put your thinking caps on and tell me what

you think about this dilemma I have. I am really at a loss as what to

do.

>

> Here in Toronto we have a group that goes from school to school

doing performances. These adults are dwarfs. Now their performance is

to poke fun at themselves and at the same time play a game of

basketball against the school's staff. Think the Harlem

Globetrotters. But their message is no matter what your size, shape,

colour etc. you can do whatever you want. Nothing can stop you from

fulfilling your dreams if you set your mind to it.

>

> I guess by now you know what my dilemma is. First should Adam see

this presentation? My concern is that his peers, who have accepted

him as normal/small kid will now think he's going to grow up to " look

like them " . And we know he won't.

> Second how will Adam react? They will explain that they had a birth

problem that has prevented them from growing. Well that's how Adam

understands RSS but he will NOT be a dwarf as an adult. Will this

scare him?

> Finally, I personally don't think I can handle being there and

seeing it. I hope that doesn't sound unsympathetic to people with

disabilities, but my heart is fragile and very raw over this. It

probably always will be. I'm the one who had to leave Dr. H.'s

presentation in Chicago because I began to cry. I am still in a

strange place of acceptance/denial.

>

> So what is best for Adam? What would you do? Don't forget he is

only 9.

>

> As an aside, tonight we were at the hair cutter's getting Colette's

hair cut. Adam, in his typical form, started to talk to another boy

there. So the conversation goes to " how old are you?'' The kid is 5.

The kid asks Adam and he says " I'm 9 " . The mother looks at me as if

to say " oh come on, he's lying " . And I said " no he is 9 " . This woman

says to Adam (oh man I was mad!!!) " well you certainly are a small

kid for 9 " (lucky the scissors were not in arms length of me at that

point).

> What was neat, was at that point Adam leaned towards me and covered

his mouth to whisper " mom tell them I have a growth problem and I

have to take needles " . He gave me permission to explain, obviously

without embarrassment to him. So I explained, and Adam went into this

long explanation of how he gets his needles and how he screamed the

first time (all with the high pitched scream as a demo!!!!) to the

point the kid started to move off!!!! But I was proud of him, I see

that as acceptance and a feeling of OK with himself.

>

> So what do I do about this? I spoke to the principal and he

said " do you want me to cancel? " And I said " oh no, but I'm not too

sure at this point if I want to be here that day or for Adam to be "

and we decided that I would call the coordinator to see what exactly

their program is. But he hasn't given me the number yet.

>

> Please tell me what you think you would do in my situation.

> I would appreciate it. I am really torn on this one.

>

> Thanks in advance

> Debby

>

>

>

[Guest guest]

Deb,

I think it's fantastic that this group performs in schools. I would

be encouraging Adam to attend. You may need to point out to him

beforehand that his growth disorder is different from their's.

We have a theme park here between Brisbane and Sydney that

the 'Little People Ass. of N.S.W promote. It would be one of the best

parks I have been to, and as young kids mine loved going there. All

buildings are built nursery rhymes and built in proportion for

dwarfs, it is also staffed by dwarfs. We just happened upon it one

year whilst on holidays, and it had the most positive effect on

(he was only 6 at the time),as it let him see there were other

short people around who could achieve whatever they wanted.

I think Adam will only benefit from this experience. You'll probably

enjoy it as well.

Good luck

ne

----- Original Message -----

[Guest guest]

Deb

That previous message should have said, the buildings are based on

nursery rhyme themes.

I got distracted when typing.

[Guest guest]

Well, Debby, as is my usual stance, I am going to go against the general

opinion of those who have posted. I think that this group, while

well-intentioned, is inappropriate for a group of such young children. I

think that these kids are going to look at these people as comical and not

really get the message that they can do whatever they want despite their

size. I admit, however, I have not seen the program and only know what you

said, so I could be off-base.

Debby, what is the point of this assembly if it is going to possibly make

even ONE child in that school uncomfortable and possibly put him at risk for

teasing and feeling different? Is it that necessary that these kids see

this and possibly open this up for Adam? I would feel this way even if it

were not your precious child who is involved.

The bottom line here is this: Is this educationally necessary for these

children in your school? Aren't there other ways to open up the eyes of the

kids and have them learn about differences? Why are you being forced to put

your child in that position?

Now, you do have one great thing on your side - a son who has a level head

on his shoulders and will most likely handle this pretty well. It's a great

idea to explain it to him and let him decide whether or not he should

attend. On the other hand, you do not know how the other kids will react

and you and he need to be prepared for that. It is very possible that they

won't even associate Adam with these other people. They are strangers and

Adam is not. The kids may not put the two together.

Now that I have gone contrary to the rest of the posts, I hope I have not

added more turmoil to your situation. I just feel pretty strongly about

this and wanted to give you another point of view to consider. Of course,

no matter what you decide, I'm behind you all the way.

Parenting is so hard....

Jodi

>

>Reply-To: RSS-Support

>To: <RSS-Support >

>CC: <MAGIC_list >

>Subject: I need advice

>Date: Tue, 30 Oct 2001 22:37:39 -0500

>

>Hi all

>I really need you all to put your thinking caps on and tell me what you

>think about this dilemma I have. I am really at a loss as what to do.

>

>Here in Toronto we have a group that goes from school to school doing

>performances. These adults are dwarfs. Now their performance is to poke fun

>at themselves and at the same time play a game of basketball against the

>school's staff. Think the Harlem Globetrotters. But their message is no

>matter what your size, shape, colour etc. you can do whatever you want.

>Nothing can stop you from fulfilling your dreams if you set your mind to

>it.

>

>I guess by now you know what my dilemma is. First should Adam see this

>presentation? My concern is that his peers, who have accepted him as

>normal/small kid will now think he's going to grow up to " look like them " .

>And we know he won't.

>Second how will Adam react? They will explain that they had a birth problem

>that has prevented them from growing. Well that's how Adam understands RSS

>but he will NOT be a dwarf as an adult. Will this scare him?

>Finally, I personally don't think I can handle being there and seeing it. I

>hope that doesn't sound unsympathetic to people with disabilities, but my

>heart is fragile and very raw over this. It probably always will be. I'm

>the one who had to leave Dr. H.'s presentation in Chicago because I began

>to cry. I am still in a strange place of acceptance/denial.

>

>So what is best for Adam? What would you do? Don't forget he is only 9.

>

>As an aside, tonight we were at the hair cutter's getting Colette's hair

>cut. Adam, in his typical form, started to talk to another boy there. So

>the conversation goes to " how old are you?'' The kid is 5. The kid asks

>Adam and he says " I'm 9 " . The mother looks at me as if to say " oh come on,

>he's lying " . And I said " no he is 9 " . This woman says to Adam (oh man I was

>mad!!!) " well you certainly are a small kid for 9 " (lucky the scissors

>were not in arms length of me at that point).

>What was neat, was at that point Adam leaned towards me and covered his

>mouth to whisper " mom tell them I have a growth problem and I have to take

>needles " . He gave me permission to explain, obviously without embarrassment

>to him. So I explained, and Adam went into this long explanation of how he

>gets his needles and how he screamed the first time (all with the high

>pitched scream as a demo!!!!) to the point the kid started to move off!!!!

>But I was proud of him, I see that as acceptance and a feeling of OK with

>himself.

>

>So what do I do about this? I spoke to the principal and he said " do you

>want me to cancel? " And I said " oh no, but I'm not too sure at this point

>if I want to be here that day or for Adam to be " and we decided that I

>would call the coordinator to see what exactly their program is. But he

>hasn't given me the number yet.

>

>Please tell me what you think you would do in my situation.

>I would appreciate it. I am really torn on this one.

>

>Thanks in advance

>Debby

>

>

>

[Guest guest]

Debby,

I haven't read what anyone else responded yet, but personally if it were here, I

would let Storm go. I have a couple of reasons for this, one is that all the

other kids will see it and may comment and I would want him to know what they

are talking about. And second, if it is the program I think it is, the kids love

it and it is fun, not serious! I would however let Adam know that it is coming,

and what it is all about and that what they have is different from what he has.

They can't take shots and get taller, he is lucky because he can!

Just my 2 cents!

Carmen

[Guest guest]

Debby,

I haven't read what anyone else responded yet, but personally if it were here, I

would let Storm go. I have a couple of reasons for this, one is that all the

other kids will see it and may comment and I would want him to know what they

are talking about. And second, if it is the program I think it is, the kids love

it and it is fun, not serious! I would however let Adam know that it is coming,

and what it is all about and that what they have is different from what he has.

They can't take shots and get taller, he is lucky because he can!

Just my 2 cents!

Carmen

[Guest guest]

Hi Deb,

I have been really going back and forth on your dilemna.. I think that Jodi,

and others have responded really well and brought up great points on

both sides.

My first reaction was, " Well, would I refuse to have Ray sing at a

school if my child was blind? " ...Of course not! Then, I realized that the dwarf

basketball players are going to be playing at a sport which is always

characterized by height, thus emphasizing how silly it is for them to be trying

it. So, then I took it further. Would we want a blind child attend a

performance where Ray CHarles was trying to throw a dart at a target? At first,

I thought, aha! It is wrong. Then, I thought again. Well, what if Ray

CHarles was able to hit the bullseye, and he was able to do it because he

practiced extra hard, was able to concentrate, wasn't distracted. Wouldn't it be

an inspiring story for someone to experience.

By the way, you should know that the Litle People of AMerica debate this issue

as well. So, there are no clear-cut answers.

Also, and I don't mean to be blunt here, but the only thing " little people " have

in common with RSS kids, is height. Their facial features are very distinctive;

their limbs appear blunted. Their proportions are much different. I have a

feeling that their " odd " appearance (I'm speaking from what a child might

think) is only partly due to height. So, my guess is that Adam isn't going to

look at the team and think, " wow, kids are laughing at people like me " .

And, once these folks start making baskets, and showing the kids that there is

some skill and talent behind all the humor, I think the kids will understand.

I'll tell you one story: I was recently walking with (turns 5 in DEcember)

on the boardwalk in Spring Lake, NJ. As we walked, a dwarf approached us. I

would say that he was in his 30s. started to laugh and point: " Look Mom!

A Daddy that looks like a kid! " . It totally blew me away. Even though he

himself is sometimes teased for being small, and has heard chants of " you can't

climb the monkey bars! " , he was still fascinated by the appearance of the dwarf.

I think the fact that the basketball players are adults, and are talented, and

put on a good show, entertain, and hopefully aren't laughed " at " , but laughed

" with " , are all good reasons for Adam to watch it and enjoy it!

By the way, what might have been a more genuine " performance " is to have two

teams of little people play each other, rather than pitting one team against

" tall " folks.

I probably have rambled and haven't helped at all...but just wanted you to know

that I understand the dilemna, but feel that it should be okay for Adam. If he

was the same kind of dwarf (I forgot the exact type.. mentioned

it...begins with an A), I would think hard about having him attend.

Oh, one FINAL comment! When you think about it, the kids will love to see their

teachers get beaten by another team. In one sense, kids can relate to the dwarf

versus " tall " adults, since kids love seeing the underdog win. TEachers are

authority figures, and to see them get beaten, or out-performed will thrill

them.

ANd, last comment: Have you seen the advertisement on TV which has some intense

music, showing an adult woman in some sort of martial arts class, beating the

butts off of her male opponents. It is a very emotional ad. I think for a

finance company. At the end, the music dies down, and she is out on a busy

street, clicking her cane. The surprise is that she is blind. Even adults like

seeing the underdog win.

Katy

" Deb B. " wrote:

> Hi all

> I really need you all to put your thinking caps on and tell me what you think

about this dilemma I have. I am really at a loss as what to do.

>

> Here in Toronto we have a group that goes from school to school doing

performances. These adults are dwarfs. Now their performance is to poke fun at

themselves and at the same time play a game of basketball against the school's

staff. Think the Harlem Globetrotters. But their message is no matter what your

size, shape, colour etc. you can do whatever you want. Nothing can stop you from

fulfilling your dreams if you set your mind to it.

>

> I guess by now you know what my dilemma is. First should Adam see this

presentation? My concern is that his peers, who have accepted him as

normal/small kid will now think he's going to grow up to " look like them " . And

we know he won't.

> Second how will Adam react? They will explain that they had a birth problem

that has prevented them from growing. Well that's how Adam understands RSS but

he will NOT be a dwarf as an adult. Will this scare him?

> Finally, I personally don't think I can handle being there and seeing it. I

hope that doesn't sound unsympathetic to people with disabilities, but my heart

is fragile and very raw over this. It probably always will be. I'm the one who

had to leave Dr. H.'s presentation in Chicago because I began to cry. I am still

in a strange place of acceptance/denial.

>

> So what is best for Adam? What would you do? Don't forget he is only 9.

>

> As an aside, tonight we were at the hair cutter's getting Colette's hair cut.

Adam, in his typical form, started to talk to another boy there. So the

conversation goes to " how old are you?'' The kid is 5. The kid asks Adam and he

says " I'm 9 " . The mother looks at me as if to say " oh come on, he's lying " . And

I said " no he is 9 " . This woman says to Adam (oh man I was mad!!!) " well you

certainly are a small kid for 9 " (lucky the scissors were not in arms length of

me at that point).

> What was neat, was at that point Adam leaned towards me and covered his mouth

to whisper " mom tell them I have a growth problem and I have to take needles " .

He gave me permission to explain, obviously without embarrassment to him. So I

explained, and Adam went into this long explanation of how he gets his needles

and how he screamed the first time (all with the high pitched scream as a

demo!!!!) to the point the kid started to move off!!!! But I was proud of him, I

see that as acceptance and a feeling of OK with himself.

>

> So what do I do about this? I spoke to the principal and he said " do you want

me to cancel? " And I said " oh no, but I'm not too sure at this point if I want

to be here that day or for Adam to be " and we decided that I would call the

coordinator to see what exactly their program is. But he hasn't given me the

number yet.

>

> Please tell me what you think you would do in my situation.

> I would appreciate it. I am really torn on this one.

>

> Thanks in advance

> Debby

>

>