Re: Social development

[Guest guest]

Kim-

I, too, struggle with what " behaviors " to try to " extinguish " . Aubrie is such

a joy just as she is. And she has friends who love her just as she is. Does

she really need to change herself to gain more " friends " ??

This am, we had a talk about pretending. She sometimes plans to pretend at

recess around something that only she knows -- like the play " Big River " that we

saw but no one else did. She totally understands that she needs to pretend and

play with friends around a topic that they share. If it's something that only

she has a memory or experience of, then they can't participate fully. She gets

that no one else can get inside her imagination. I am thankful that she has the

communication to talk about and understand such abstract concepts.

I really think our kids are the most self-aware individuals. We could all

benefit from such introspection at a young age. I wish I'd had the forethought

to talk to in-depth with my son from the beginning!

For now, my thoughts are to help her adjust what she does and when so that she

will be able to hold a job and function in society in ways other than socially.

She is happy socially. I think she'll always have friends on her own terms and

in her own way. So my goal is not to change that or change the essence of who

she is.

That's not to say I don't have moments of fear and pain that comes from my own

" mother feelings " . I sure do. But I am thinking that those are more of my

making than Aubrie's.

My goal is to help her adjust herself to the requirements of society in order

to be accepted at work etc. Still -- we wish the world would accept us as we

are -- but we all need to modify ourselves for the situation in order to be

successful. That is adult reality.

This is a hard piece. It's so subjective and hard to wrap my brain around. I

think talking it thru with each other helps to think it thru completely. I know

that my thoughts on this are in process. I'm glad you shared your thoughts and

initiated more thinking and sharing.

Michele W

Aubrie's mom -8 yrs

[Guest guest]

I too struggle with the firend issue. Tim just had a playdate over the

weekend with a friend from school. she is not in his class , but on the bus

with him. they had fun and it went well--problem--she is in the next town

over--well, a 1/2 hour away. so, it's not easy to plan getting together.

the girl who lives here in town also not his age and is attending regular

shcool this year--she only has hearing issues and they feel she will do

better there. so although she is in town--she is regular now and different

schedule.

no neighbor hood kids really to speak of those that are are in sports and

way abouve tim socially--and so the pattern goes on.

Re: Social development

> Kim-

> I, too, struggle with what " behaviors " to try to " extinguish " . Aubrie is

> such a joy just as she is. And she has friends who love her just as she

> is. Does she really need to change herself to gain more " friends " ??

>

> This am, we had a talk about pretending. She sometimes plans to pretend

> at recess around something that only she knows -- like the play " Big

> River " that we saw but no one else did. She totally understands that she

> needs to pretend and play with friends around a topic that they share. If

> it's something that only she has a memory or experience of, then they

> can't participate fully. She gets that no one else can get inside her

> imagination. I am thankful that she has the communication to talk about

> and understand such abstract concepts.

>

> I really think our kids are the most self-aware individuals. We could

> all benefit from such introspection at a young age. I wish I'd had the

> forethought to talk to in-depth with my son from the beginning!

>

> For now, my thoughts are to help her adjust what she does and when so

> that she will be able to hold a job and function in society in ways other

> than socially. She is happy socially. I think she'll always have friends

> on her own terms and in her own way. So my goal is not to change that or

> change the essence of who she is.

>

> That's not to say I don't have moments of fear and pain that comes from

> my own " mother feelings " . I sure do. But I am thinking that those are

> more of my making than Aubrie's.

>

> My goal is to help her adjust herself to the requirements of society in

> order to be accepted at work etc. Still -- we wish the world would accept

> us as we are -- but we all need to modify ourselves for the situation in

> order to be successful. That is adult reality.

>

> This is a hard piece. It's so subjective and hard to wrap my brain

> around. I think talking it thru with each other helps to think it thru

> completely. I know that my thoughts on this are in process. I'm glad you

> shared your thoughts and initiated more thinking and sharing.

>

> Michele W

> Aubrie's mom -8 yrs

>

>

>

[Guest guest]

Michele,

I feel that I want to add something to what you have posted, but am at a loss

for words. Perhaps you have said it all and that might be why I am at a loss.

Knowing " our " kids like we do we all do want everyone to love them as we do. I

also agree with you that their " quirkiness " is what makes them so special (for

the most part!) and we want others to appreciate it like we do. Alas, this is

not to be for the most part. Guiding them to understand their own actions and

how it impacts their social relationships is a delicate dance. We want them to

be " free to be " --Lord knows they fought hard enough just to " be " --but the " free "

part can get them in trouble. Another thought needs to be here, but I am

having trouble formulating it. So...I will end on this rather vague note!!!

pam

[Guest guest]

Pam,

I think the piece that is hard to formulate and is hard for me is respecting

them where they are as we move towards the next level; not accepting the

status quo of their quirks, but also not forcing the square peg of CHARGE

into the round hole of " societal expectations " and harming the child in the

process.

Kim

> Michele,

> I feel that I want to add something to what you have posted, but am at a loss

> for words. Perhaps you have said it all and that might be why I am at a loss.

>

> Knowing " our " kids like we do we all do want everyone to love them as we do.

> I also agree with you that their " quirkiness " is what makes them so special

> (for the most part!) and we want others to appreciate it like we do. Alas,

> this is not to be for the most part. Guiding them to understand their own

> actions and how it impacts their social relationships is a delicate dance. We

> want them to be " free to be " --Lord knows they fought hard enough just to

> " be " --but the " free " part can get them in trouble. Another thought needs to

> be here, but I am having trouble formulating it. So...I will end on this

> rather vague note!!!

>

> pam

>

>

>

>

>

>

[Guest guest]

Kim,

Truly!!!! And with the kids that these conversations can happen with, some

" headway " can be made because there is a different level of understanding.

With the kids who have not developed this understanding yet, it is a whole

different experience.

And you know, it just occured to me that so much of what this thread has

triggered in me is that the kids, in general, are so sure of themselves and

happy with themselves but it isn't our experience of life. We know what

friendships and relationships mean to us and how much we may crave the

companionship; we would naturally assume that our children--ANY child--would

want/feel the same need. But this is not true sometimes and maybe that is the

hard part to understand, too. Their most importand companion? THemselves!! I

think Michele alluded to this, also.

pam

ps. I am going to bed, but my head is still churning over this.

[Guest guest]

Pam, maybe you are getting closer to the question. Do we want to teach them

to desire what we want, when under best case scenario it may not be possible

to achieve that goal? Dylan is happy with himself and his life. And I

believe humans are programmed to emotionally thrive on competence, and on

belonging, so mastering new things and having a place to belong are very

important to him remaining happy in himself. I do want him to be able to

work, to make decisions for himself about what he wants to do for a living,

where he wants to live, who he wants to spend his time with and how - you

know to be self-determined. But in the process of getting there, I don't

want to make him unhappy with himself (any more than a bit of teenage angst

perhaps). Kim

> Kim,

> Truly!!!! And with the kids that these conversations can happen with, some

> " headway " can be made because there is a different level of understanding.

> With the kids who have not developed this understanding yet, it is a whole

> different experience.

>

> And you know, it just occured to me that so much of what this thread has

> triggered in me is that the kids, in general, are so sure of themselves and

> happy with themselves but it isn't our experience of life. We know what

> friendships and relationships mean to us and how much we may crave the

> companionship; we would naturally assume that our children--ANY child--would

> want/feel the same need. But this is not true sometimes and maybe that is the

> hard part to understand, too. Their most importand companion? THemselves!! I

> think Michele alluded to this, also.

>

> pam

>

> ps. I am going to bed, but my head is still churning over this.

>

>

>

[Guest guest]

maria alluded to the problem that ive had soem of the people are more

socialy up there than me mor interlectualy like when you look at us charger

and compare us to the rest of the non disabled people you will find weve had

all the life experiences they havent and theyve had all thos we havent if

that makes sence thats how mum often says it anyway and also as maria said

some of the people we can talk to live to far away one of my friends is an

hour away location often gets in the way of these things and i knwo all my

friends lvoe em for who i am they often try to make it so we see each other

when we can but ti does get hard the comunication barrieerxs are often

factors like some people i dont hear and stuff as for my friends ive got one

really good frined who i chat to on msn everynight she cant really talk shes

got cp and in chair but she understand me and we know taht its crazy like

one time we and another freind were they were at my hosue and the mums was

talking and our other friend mum was like how will i do this when we finnish

school and the thing is a normal mum would not ask how she is going to go

and get her vegies no she wouldnt ellen

>

> Pam, maybe you are getting closer to the question. Do we want to teach

> them

> to desire what we want, when under best case scenario it may not be

> possible

> to achieve that goal? Dylan is happy with himself and his life. And I

> believe humans are programmed to emotionally thrive on competence, and on

> belonging, so mastering new things and having a place to belong are very

> important to him remaining happy in himself. I do want him to be able to

> work, to make decisions for himself about what he wants to do for a

> living,

> where he wants to live, who he wants to spend his time with and how - you

> know to be self-determined. But in the process of getting there, I don't

> want to make him unhappy with himself (any more than a bit of teenage

> angst

> perhaps). Kim

>

>

>

> > Kim,

> > Truly!!!! And with the kids that these conversations can happen with,

> some

> > " headway " can be made because there is a different level of

> understanding.

> > With the kids who have not developed this understanding yet, it is a

> whole

> > different experience.

> >

> > And you know, it just occured to me that so much of what this thread has

> > triggered in me is that the kids, in general, are so sure of themselves

> and

> > happy with themselves but it isn't our experience of life. We know what

> > friendships and relationships mean to us and how much we may crave the

> > companionship; we would naturally assume that our children--ANY

> child--would

> > want/feel the same need. But this is not true sometimes and maybe that

> is the

> > hard part to understand, too. Their most importand

> companion? THemselves!! I

> > think Michele alluded to this, also.

> >

> > pam

> >

> > ps. I am going to bed, but my head is still churning over this.

> >

> >

> >

[Guest guest]

Kim,

The greatest thing I remain fighting for is Patty's self confidence and sense

of belonging. We fight for acceptance and push for continued learning. We

are thrilled with who and what she is but do not accept limitations placed on

her. It's such a weird thing. So far we have kept her feeling happy within

herself while also accepting her differences. Nothing makes her more or less of

a person. It's incredibly hard but not impossible.

Patty is happy who she is. As we go through this life we can see that most

adults who have CHARGE are. It is one of the greatest things about them.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Pam-

When that thoughts gets more concrete, be sure to share. I, too, feel that my

thoughts on this are not fully developed. It's so hard to put words to it. I

feel pretty confident that we are on the same page, but it certainly helps to

find a way to put it to words in order to share with the " team " at some point.

We still have no socialization goals on Aubrie's IEP! I just realized that!!

Argh!

Michele W

[Guest guest]

Kim-

Well-said -- and it is an incredibly difficult and delicate balance.

Michele W

Kim Lauger wrote:

Pam,

I think the piece that is hard to formulate and is hard for me is respecting

them where they are as we move towards the next level; not accepting the

status quo of their quirks, but also not forcing the square peg of CHARGE

into the round hole of " societal expectations " and harming the child in the

process.

Kim

[Guest guest]

Pam & Kim-

Yes -- this is an important piece -- how much do they crave the friendships

and how much is it just that we think they must? On the one hand, Aubrie is

hugely social and loves her friends. I think she'd be devastated if she felt

friendless or if one of her friends were mean to her. But she doesn't need them

in the same way that I did at her age -- she doesn't rely on them for her

validation -- she doesn't need their input every day -- she doesn't need them to

have fun. She needs them in her life, but in a different role than the way that

I need my friends. Again, hard to describe, but do you hear what I'm getting

at?? Maybe one of you can say it more clearly.

This morning, Aubrie told me that one of the boys at school was calling her

stupid yesterday. This is a difficult kid who, I think, has been seated next to

Aubrie as a strategy to help him. She invited him to her birthday party but he

didn't come. When I asked what she did, she said she just ignored him cuz

that's a bad word and she didn't want to say it back. When asked how it made

her feel, she said bad. So we talked about telling him that it makes her feel

bad when he says that and friends don't hurt each other. I'm not sure what

she'll do today if he does it again. I don't think she took it personally. She

seems to get that some kids just do naughty things. This kid is one of them.

My guess is that she's not the only one he's mean to -- in fact, he's probably

spared her up until now. So I was pleased that she seems secure enough in

herself not to take his words as a personal attack.

Enough... but this is an important topic to continue exploring.

Michele W

[Guest guest]

Ellen-

I like this observation. It's true -- your life experiences are not those

that most people your age have experienced. And you haven't experienced things

most kids have. So there's a difference in backgrounds and experiences. I see

that with Aubrie. Our experiences frame who we are and how we understand the

world. So if your experiences are vastly different than the " norm " from birth

on, of course, your understandings will be different too. People tend to choose

people with similarities when they look for friends. So how can you build

friendships when there are few similarities? The answer is that you can and

that it can be very rewarding for both parties, but it's not the easy road. Now

that I'm older, I seek friends with different life experiences cuz I know we can

connect on a basic level and then we can learn and enrich each other's lives

with our differences. But when I was younger, I just gravitated towards the

easy, comfortable route.

Hmmm...

Michele W

[Guest guest]

chiming in )

Up until middle school, was the happiest kid in the world. We called

him " skinamarink " because he was so light hearted and easy going.

Delighted just moving through the day - seemingly endlessly grateful. He

took nothing personally. He was driven, focused, and absolutely certain he

was popular. He had what I called " Yorkshire Terrier " Status. Everyone

waved at him and said " Hi " , but no one " hung out " with him. I noticed he

sat alone. I noticed no one at school included him in play. I noticed that

few at school (deaf or hearing) initiated casual/optional conversation with

him. I worried, but he seemed fine. I thought maybe he was just a " quiet

type. "

Fast forward to Middle School. Now he was aware he was alone. He was

definitely not going to find anyone his age to listed to him perseverate or

postulate on space travel and Mars, Digimon and Pokemon - melding Science

with fantasy. He wasn't that strong at give and take conversation. I would

see kids mature enough to be polite stand and listen, start to move away,

wait, and then walk away. I would see continue talking - to himself.

It broke my heart.

Put him in a group with a purpose - leadership camp, space camp, group

projects at school - where the subject is defined - so he is on subject, and

he is so bright and hard working, that in these contexts he would " succeed. "

But that only made it worse when these people would wave, say " hi " and then

go sit somewhere else to have lunch.

When I go back to his middle school (where his two younger brothers go) all

his former teachers always ask how he is. He is always so enthusiastic,

dedicated and alive in classrooms. I thank them, and mention that he is

still lonely. They never knew. He is so well liked. I reply " Yes, he is

well liked in class, but he always eats lunch alone. " That was something

the teachers would never have been able to figure out. They liked him. The

kids liked him. He must be a popular guy.

Through that pain he has taken leaps and bounds in give and take

conversation, and when you just sit and chit chat with him he is charming,

empathetic and very funny. He still likes a good story - but he can be

redirected, and only on a bad day does he get annoyed at being signaled to

" wrap up " a lengthy dissertation. He now knows teachers like him and why,

and he appreciates this, and doesn't confuse it with popularity. He has one

friend who sees him at lunch at school - but it still isn't that deep

validating friendship he has with people outside of school. It definitely

helps to have had similar experiences - I know he feels so close to

Prouty and Chip Dixon, and some of that is simply they don't have to

" translate " their experience - they just start with who they are. He also

has some medically unremarkable friends. All of them are a few years

younger than him, and all are of the goofy - wild puppy variety - not the

serious broody types. They have always been the kids who just dealt with

straight ahead as though there never was a difference (as a matter of

fact, I swear they really are oblivious to it!).

I can see is starting to know more about who he is, and no longer

tries to make that match what he thinks he should be (from images on things

like " Lizzy Maguire " and other media ideas). This self-reflection is

something I see my other children started work on much earlier, but then

they were more uncomfortable earlier and making adjustments and realizing

awarenesses in smaller bites from an earlier age. (That is also so true of

independence skills! When our second son was in first grade, I was shocked

at the independence expected ofhim at school - here was in fourth

grade, and the teacher and aides made certain nothing slipped by - but at

the same time, gave him no independence!)

had so much work just standing, walking, breathing, being suctioned,

managing his pencil - all while excelling academically - processing sign and

voice - I guess the fluency of all that only settled in by the time he was

nine - and then he was only given independence from his health aides when he

was in sixth grade. Now, at such a tender and vulnerable time, when he

already has become aware shockingly that somehow he is different and he

doesn't have any friends he has to undertake a crash course in mastering

interpersonal skills and independence - things his brothers have been

working on in baby steps from the beginning......

Gee, I am not restimulated or in a quandary am I )

Welcoming any and all input and further thoughts-

Yuka

Re: Social development

> Ellen-

> I like this observation. It's true -- your life experiences are not

those that most people your age have experienced. And you haven't

experienced things most kids have. So there's a difference in backgrounds

and experiences. I see that with Aubrie. Our experiences frame who we are

and how we understand the world. So if your experiences are vastly

different than the " norm " from birth on, of course, your understandings will

be different too. People tend to choose people with similarities when they

look for friends. So how can you build friendships when there are few

similarities? The answer is that you can and that it can be very rewarding

for both parties, but it's not the easy road. Now that I'm older, I seek

friends with different life experiences cuz I know we can connect on a basic

level and then we can learn and enrich each other's lives with our

differences. But when I was younger, I just gravitated towards the easy,

comfortable route.

>

> Hmmm...

>

> Michele W

> Pam & Kim-

> Yes -- this is an important piece -- how much do they crave the

friendships and how much is it just that we think they must? On the one

hand, Aubrie is hugely social and loves her friends. I think she'd be

devastated if she felt friendless or if one of her friends were mean to her.

But she doesn't need them in the same way that I did at her age -- she

doesn't rely on them for her validation -- she doesn't need their input

every day -- she doesn't need them to have fun. She needs them in her life,

but in a different role than the way that I need my friends. Again, hard to

describe, but do you hear what I'm getting at?? Maybe one of you can say it

more clearly.

[Guest guest]

Wow sounds like my little guy, same thing in 5th grade now and

sitting alone at lunch! (Teacher has told me that she believes this is

how he wants it??) Maybe it is down time for him but it does break my

heart. Kids always say Hi and his friends outside school are all

younger too. And the Space and planets thing, wow my son is an addict

for sure could tell you all about the planets how far away from the sun,

how many moons, what type of atmospher you name it. And he can go on

and on and on. Did your son go to space camp? We visited Kennedy space

center in Nov. and now that is what my son wants to do? All he has on

his Chistmas list is planet stuff including clothes with solar system on

it. As far as school work he does fine but the social thing is a whole

other deal. I agree that he doesn't seem to need the kindship and maybe

the teacher is right maybe he wants it that way and it is just not my

" norm " . Kim/Michigan

Re: Social development

chiming in )

Up until middle school, was the happiest kid in the world.

We called

him " skinamarink " because he was so light hearted and easy

going.

Delighted just moving through the day - seemingly endlessly

grateful. He

took nothing personally. He was driven, focused, and absolutely

certain he

was popular. He had what I called " Yorkshire Terrier " Status.

Everyone

waved at him and said " Hi " , but no one " hung out " with him. I

noticed he

sat alone. I noticed no one at school included him in play. I

noticed that

few at school (deaf or hearing) initiated casual/optional

conversation with

him. I worried, but he seemed fine. I thought maybe he was just

a " quiet

type. "

Fast forward to Middle School. Now he was aware he was alone.

He was

definitely not going to find anyone his age to listed to him

perseverate or

postulate on space travel and Mars, Digimon and Pokemon -

melding Science

with fantasy. He wasn't that strong at give and take

conversation. I would

see kids mature enough to be polite stand and listen, start to

move away,

wait, and then walk away. I would see continue talking -

to himself.

It broke my heart.

Put him in a group with a purpose - leadership camp, space camp,

group

projects at school - where the subject is defined - so he is on

subject, and

he is so bright and hard working, that in these contexts he

would " succeed. "

But that only made it worse when these people would wave, say

" hi " and then

go sit somewhere else to have lunch.

When I go back to his middle school (where his two younger

brothers go) all

his former teachers always ask how he is. He is always so

enthusiastic,

dedicated and alive in classrooms. I thank them, and mention

that he is

still lonely. They never knew. He is so well liked. I reply

" Yes, he is

well liked in class, but he always eats lunch alone. " That was

something

the teachers would never have been able to figure out. They

liked him. The

kids liked him. He must be a popular guy.

Through that pain he has taken leaps and bounds in give and take

conversation, and when you just sit and chit chat with him he is

charming,

empathetic and very funny. He still likes a good story - but he

can be

redirected, and only on a bad day does he get annoyed at being

signaled to

" wrap up " a lengthy dissertation. He now knows teachers like

him and why,

and he appreciates this, and doesn't confuse it with popularity.

He has one

friend who sees him at lunch at school - but it still isn't that

deep

validating friendship he has with people outside of school. It

definitely

helps to have had similar experiences - I know he feels so close

to

Prouty and Chip Dixon, and some of that is simply they don't

have to

" translate " their experience - they just start with who they

are. He also

has some medically unremarkable friends. All of them are a few

years

younger than him, and all are of the goofy - wild puppy variety

- not the

serious broody types. They have always been the kids who just

dealt with

straight ahead as though there never was a difference (as

a matter of

fact, I swear they really are oblivious to it!).

I can see is starting to know more about who he is, and no

longer

tries to make that match what he thinks he should be (from

images on things

like " Lizzy Maguire " and other media ideas). This

self-reflection is

something I see my other children started work on much earlier,

but then

they were more uncomfortable earlier and making adjustments and

realizing

awarenesses in smaller bites from an earlier age. (That is also

so true of

independence skills! When our second son was in first grade, I

was shocked

at the independence expected ofhim at school - here was in

fourth

grade, and the teacher and aides made certain nothing slipped by

- but at

the same time, gave him no independence!)

had so much work just standing, walking, breathing, being

suctioned,

managing his pencil - all while excelling academically -

processing sign and

voice - I guess the fluency of all that only settled in by the

time he was

nine - and then he was only given independence from his health

aides when he

was in sixth grade. Now, at such a tender and vulnerable time,

when he

already has become aware shockingly that somehow he is different

and he

doesn't have any friends he has to undertake a crash course in

mastering

interpersonal skills and independence - things his brothers have

been

working on in baby steps from the beginning......

Gee, I am not restimulated or in a quandary am I )

Welcoming any and all input and further thoughts-

Yuka

Re: Social development

> Ellen-

> I like this observation. It's true -- your life experiences

are not

those that most people your age have experienced. And you

haven't

experienced things most kids have. So there's a difference in

backgrounds

and experiences. I see that with Aubrie. Our experiences frame

who we are

and how we understand the world. So if your experiences are

vastly

different than the " norm " from birth on, of course, your

understandings will

be different too. People tend to choose people with

similarities when they

look for friends. So how can you build friendships when there

are few

similarities? The answer is that you can and that it can be

very rewarding

for both parties, but it's not the easy road. Now that I'm

older, I seek

friends with different life experiences cuz I know we can

connect on a basic

level and then we can learn and enrich each other's lives with

our

differences. But when I was younger, I just gravitated towards

the easy,

comfortable route.

>

> Hmmm...

>

> Michele W

> Pam & Kim-

> Yes -- this is an important piece -- how much do they crave

the

friendships and how much is it just that we think they must? On

the one

hand, Aubrie is hugely social and loves her friends. I think

she'd be

devastated if she felt friendless or if one of her friends were

mean to her.

But she doesn't need them in the same way that I did at her age

-- she

doesn't rely on them for her validation -- she doesn't need

their input

every day -- she doesn't need them to have fun. She needs them

in her life,

but in a different role than the way that I need my friends.

Again, hard to

describe, but do you hear what I'm getting at?? Maybe one of

you can say it

more clearly.

Membership of this email support groups does not constitute

membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada information and membership, please visit

http://www.chargesyndrome.ca or email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be

available at www.chargesyndrome.org or by calling 1-.

[Guest guest]

Yuka-

Way too much for me to deal with! Wow - what a journey. I can see Aubrie

developing in the same way. If you could go back, what would you do

differently?? Is there anything we can do? She is happy so I hate to make

something that's not a problem for her into one. On the other hand, by

being aware of what may be coming, I can frame my interactions and support

of her now to prepare her for the possible future. I guess just knowing

what may be ahead, may allow us to quietly set the stage and prepare for

it??? More thoughts later...

Michele W

Aubrie's mom

[Guest guest]

Michele-

You have asked the question that has haunted me for years......

And in hindsight, I would have tried to give him the same chance my other

two children have had - an exposure to a wider pool of children so that the

one he was attracted to - or the one that might have been attracted to him -

would be more easily able to find him. All three of my boys seem to be

uniquely crafted - way out of the realm of " within normal limits " - slightly

intense, very earnest, more literal than most at times, incredibly diligent

with great integrity and sort of a forthrightness that can be

awkward.....Our middle and youngest sons both have a nice core of close

friends - but it took years to develop them. And while working it out, they

at least each were able to find a " companion " throughout.

, on the other hand, was in a small DHH classroom of five to thirteen

kids which covered multiple grade levels (usually three) - that stayed the

same for nine years (2 years pre school, kindergarten and grades 1-6). When

he was mainstreamed, the school policy was to pull the children back to the

DHH setting for assemblies, roll call, pe, etc. Also, while in the

mainstream class - between the interpreter and moving back and forth to

different classrooms- where was the time for socialization? Those

opportunities happen during the in-between moments, and make themselves

available through repeated opportunity in predictable settings. No one was

going to seek him out while he sat alone at lunch, much less find common

ground or interests. But if he had a chance to be in a class of twenty for

three years and then a class of thirty for three - each year a slightly

different grouping, he would have had more of a chance. I look at the

classmates of my younger two children- and even the loneliest ones in their

classes weren't anywhere the area of lonely was... and all that

while, would have had multiple minute moments to learn what in him is

likable and attractive and comforting and charming......

with love,

yuka

RE: Social development

> Yuka-

> Way too much for me to deal with! Wow - what a journey. I can see Aubrie

> developing in the same way. If you could go back, what would you do

> differently?? Is there anything we can do? She is happy so I hate to

make

> something that's not a problem for her into one. On the other hand, by

> being aware of what may be coming, I can frame my interactions and support

> of her now to prepare her for the possible future. I guess just knowing

> what may be ahead, may allow us to quietly set the stage and prepare for

> it??? More thoughts later...

>

> Michele W

> Aubrie's mom

>

>

[Guest guest]

Yuka-

Interesting. At a training this weekend, the speaker talked about the need

for inclusion because kids who grow up in spec ed only learn how to

socialize in special ed. They don't learn the " normal " social skills that

happen in a regular setting. And if they do learn it -as in getting taught

as part of their plan - they don't get enough opportunities to practice it

on a regular basis in regular settings.

In my core, I know that I believe in full inclusion for all kids and adults

in school, work, and the community. How that can truly work for everyone is

what I struggle with. If we had all the money in the world to put in place

all the supports necessary, it could be a beautiful thing.

Michele W

Aubrie's mom

[Guest guest]

Well, such a discussion and such an important and stressful part of our

lives for Patty. Oh how in the world am I going to make this short?

When she was younger she was so cute. All the kids wanted to " help " her or

be her buddy. They fought over her. Going out in our community there were

tons of people I didn't know who would stop and say hi to her.

Then she got older. She never really did socialize with her peers during

lunch. She wasn't ever allowed to bring her FM there so she never could hear

the socialization going on. During recess they used to partner her up with

peers. She loved it. We also had her in softball, basketball, brownies,

gymnastics, tiakwando and anything else we could think of. She was included.

She

also attended birthday parties.

But the kids got older and her disabilities stuck out more. The gap grew.

She couldn't compete with her peers in sports. She was saddened that she just

didn't know what was going on and no one took the time to slow down for her.

The gap got bigger and bigger. I also heard of parties going on with

everyone invited but her. I kept quiet.

At first Patty was OK with it everything. Soon though she wanted friends

just like everyone else. Middleschool was horrible. That is a time where kids

pick on others even for the smallest of differences. Patty was picked on.

Or just avoided altogether. It was then that she got that tough skin she

has. That's when she learned to stand up for herself. But more than that

Patty

wanted friends just like anyone else.

There were attempts made by school personnel but they just didn't get that

Patty wasn't experiencing the would differently than thought they thought.

She didn't hear, see, or even feel the social things going on. She didn't have

appropriate learning social experiences other children have. Luckily I have

a large family that provided the personal connections she so desperately

needed.

There were tons of kids who were nice to her. But they were nice in front

of the adults and then mean when no one was looking. There were others who

were nice to the kid with the FM. But I can't tell you how many times Patty

would invite these friends over or to places and most often they said maybe or

even sure. We would make plans and she'd be so happy. Then moments before

they were due they would call and say they were sick, their moms had an

emergency, soemthing came up... And that's when Patty's perseverations began.

She

would get stuck on a person who old be nice to her. Then she would assume

they ere her friend when in reality they weren't.

There' s so much more. Patty always seemed OK with things. That is until

one night I was exhausted and could feel Patty being upset yet again and not

being able to find out why. Finally I told her, while I was really going to

go to sleep, that my room was " girl talk " safe and whatever she told me there

was something I would keep secret. Oh my, her feelings came out galore. I

can't tell you how many times she cried and asked why she was so lonely, why

didn't people invite her places ... and she would share what people said and

how they hurt her. It was then I realized I had to do nothing more important

in her life than to keep her self confidence up. That is exactly what I did

and continue to have to do.

I have to also add that society has rules and boundaries. I had to make

sure Patty acted and reacted in a socially acceptable manner. I had to teach

her things other children just learn through experience.

She did have a couple of friends finally in her junior and senior year.

These were kids who didn't care about her differences. But they were also

loners. Then came the time she went to Perkins. There she found people who

had

things in common with her, a disability. There she grew socially and

emotionally. Oh it was grand. She even had a date for her prom.

But then Patty graduated. And we moved. She is once again lonely. She

cant drive or get around herself due to lack of transportation. We have to

bring her everywhere. How many 21 year olds have to go places with their

parents. But I wont give up. Patty is a great person and a great friend. She

grew

socially and continues to. She'll have friends she sees once again. She'll

date and she'll be happy.

I love Patty for who she is. She loves herself. She needs her space and is

fine with that, but she is a social person. And she continues to grow.

Oh I could write more here. This is just such an important topic. And it is

heartbreaking at times. My advice is to just make sure you find ways to

keep your children happy within themselves. Let them feel loved and valued.

They'll do the rest of what is right for them. We just have to follow their

lead.

Patty continues to lead me.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

Michele and Kim,

Tyler, up until this year has been in the regular setting and pulled for English

and Math in the " Resource Room " to make sure he heard/understood everything.

Tyler does not have and did not learn the social cues from his peers. He became

more socially isolated as they pulled apart from him.

The Speech Language Pathologist did her " Social Stories " that were also supposed

to aid in his Social Development. Nothing has worked.

Being in 100% Special Education hasn't helped Tyler either. I had been begging

for Social Skills help since 2nd grade. He is now in 6th.

At least where we come from, our public schools aren't the answer. I also

toured our ISD and ISB, I am not impressed with either of them either. ISB is

more focused on social skills but doesn't have any knowledge of CHARGE.

Good luck. I hope Aubrie is getting what she needs. I am getting closer to

having everything I need to submit my paperwork for Tyler's eval to Perkins.

The State of Indiana is lacking. I have a 12 year old capable of so much, it is

these " quirks " that are challenging.

There did come a time for Tyler too that he was very troubled by not having

friends. He still considers the friends he had two years ago. Now he only has

" helpers. " He interacts with his assistant and teacher. He doesn't know his

classmates names and he is fully capable of doing it. I think there are other

stressors.

I have enjoyed reading all these posts.

Kristy

Tyler's mom

RE: Social development

Yuka-

Interesting. At a training this weekend, the speaker talked about the need

for inclusion because kids who grow up in spec ed only learn how to

socialize in special ed. They don't learn the " normal " social skills that

happen in a regular setting. And if they do learn it -as in getting taught

as part of their plan - they don't get enough opportunities to practice it

on a regular basis in regular settings.

In my core, I know that I believe in full inclusion for all kids and adults

in school, work, and the community. How that can truly work for everyone is

what I struggle with. If we had all the money in the world to put in place

all the supports necessary, it could be a beautiful thing.

Michele W

Aubrie's mom

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or

visit

the web site at http://www.chargesyndrome.org<http://www.chargesyndrome.org/>

- for CHARGE Syndrome Canada information and membership, please visit

http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling

1-.

[Guest guest]

Kristy,

It is such a huge piece. I guess my concern is that there is so much we can

teach, yet there is much we can't and that even goes for our other kids too.

As a parent, it is always hard to watch when our children feel hurt or

others don't recognize their gifts. With CHARGE it is just so much more

complicated, no matter where they go to school.

I hope Perkins eval gives you some answers.

Kim

> Michele and Kim,

>

> Tyler, up until this year has been in the regular setting and pulled for

> English and Math in the " Resource Room " to make sure he heard/understood

> everything. Tyler does not have and did not learn the social cues from his

> peers. He became more socially isolated as they pulled apart from him.

>

> The Speech Language Pathologist did her " Social Stories " that were also

> supposed to aid in his Social Development. Nothing has worked.

>

> Being in 100% Special Education hasn't helped Tyler either. I had been

> begging for Social Skills help since 2nd grade. He is now in 6th.

>

> At least where we come from, our public schools aren't the answer. I also

> toured our ISD and ISB, I am not impressed with either of them either. ISB is

> more focused on social skills but doesn't have any knowledge of CHARGE.

>

> Good luck. I hope Aubrie is getting what she needs. I am getting closer to

> having everything I need to submit my paperwork for Tyler's eval to Perkins.

> The State of Indiana is lacking. I have a 12 year old capable of so much, it

> is these " quirks " that are challenging.

>

> There did come a time for Tyler too that he was very troubled by not having

> friends. He still considers the friends he had two years ago. Now he only

> has " helpers. " He interacts with his assistant and teacher. He doesn't know

> his classmates names and he is fully capable of doing it. I think there are

> other stressors.

>

> I have enjoyed reading all these posts.

>

> Kristy

> Tyler's mom

>

> RE: Social development

>

>

>

> Yuka-

> Interesting. At a training this weekend, the speaker talked about the need

> for inclusion because kids who grow up in spec ed only learn how to

> socialize in special ed. They don't learn the " normal " social skills that

> happen in a regular setting. And if they do learn it -as in getting taught

> as part of their plan - they don't get enough opportunities to practice it

> on a regular basis in regular settings.

>

> In my core, I know that I believe in full inclusion for all kids and adults

> in school, work, and the community. How that can truly work for everyone is

> what I struggle with. If we had all the money in the world to put in place

> all the supports necessary, it could be a beautiful thing.

>

> Michele W

> Aubrie's mom

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or

> visit

> the web site at http://www.chargesyndrome.org<http://www.chargesyndrome.org/>

> - for CHARGE Syndrome Canada information and membership, please visit

> http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling

> 1-.

>

[Guest guest]

and keep us posted on that perkins eval pams so great when you meet her if

you do youhave to give her a cuddle coruse shes the best on this list lol

bonnie i have and will say again me and patty are alike in many ways do you

see it in my posts i se it in you posts it encouraging that patty allways

tried thats what i alwasy did and still do my friends if they dont tak to me

ill think silly things but they still love me they are my true friends hugs

ellen

>

> Kristy,

>

> It is such a huge piece. I guess my concern is that there is so much we

> can

> teach, yet there is much we can't and that even goes for our other kids

> too.

> As a parent, it is always hard to watch when our children feel hurt or

> others don't recognize their gifts. With CHARGE it is just so much more

> complicated, no matter where they go to school.

>

> I hope Perkins eval gives you some answers.

>

> Kim

>

>

>

>

> > Michele and Kim,

> >

> > Tyler, up until this year has been in the regular setting and pulled for

> > English and Math in the " Resource Room " to make sure he heard/understood

> > everything. Tyler does not have and did not learn the social cues from

> his

> > peers. He became more socially isolated as they pulled apart from him.

> >

> > The Speech Language Pathologist did her " Social Stories " that were also

> > supposed to aid in his Social Development. Nothing has worked.

> >

> > Being in 100% Special Education hasn't helped Tyler either. I had been

> > begging for Social Skills help since 2nd grade. He is now in 6th.

> >

> > At least where we come from, our public schools aren't the answer. I

> also

> > toured our ISD and ISB, I am not impressed with either of them

> either. ISB is

> > more focused on social skills but doesn't have any knowledge of CHARGE.

> >

> > Good luck. I hope Aubrie is getting what she needs. I am getting

> closer to

> > having everything I need to submit my paperwork for Tyler's eval to

> Perkins.

> > The State of Indiana is lacking. I have a 12 year old capable of so

> much, it

> > is these " quirks " that are challenging.

> >

> > There did come a time for Tyler too that he was very troubled by not

> having

> > friends. He still considers the friends he had two years ago. Now he

> only

> > has " helpers. " He interacts with his assistant and teacher. He doesn't

> know

> > his classmates names and he is fully capable of doing it. I think there

> are

> > other stressors.

> >

> > I have enjoyed reading all these posts.

> >

> > Kristy

> > Tyler's mom

> >

> > RE: Social development

> >

> >

> >

> > Yuka-

> > Interesting. At a training this weekend, the speaker talked about the

> need

> > for inclusion because kids who grow up in spec ed only learn how to

> > socialize in special ed. They don't learn the " normal " social skills

> that

> > happen in a regular setting. And if they do learn it -as in getting

> taught

> > as part of their plan - they don't get enough opportunities to practice

> it

> > on a regular basis in regular settings.

> >

> > In my core, I know that I believe in full inclusion for all kids and

> adults

> > in school, work, and the community. How that can truly work for

> everyone is

> > what I struggle with. If we had all the money in the world to put in

> place

> > all the supports necessary, it could be a beautiful thing.

> >

> > Michele W

> > Aubrie's mom

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@...<mailto:

> marion@...> or

> > visit

> > the web site at http://www.chargesyndrome.org<

> http://www.chargesyndrome.org/>

> > - for CHARGE Syndrome Canada information and membership, please visit

> > http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email

> > info@... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling

> > 1-.

> >

[Guest guest]

ellen,

I'll take that cuddle from you!!

pam

[Guest guest]

Michele,

Oh yes!! I do think we are on the same page and I love that we are all sharing

in the writing of the chapter!

pam

[Guest guest]

soem of these talks should be included in the manual i think just my idea

michlle bonnie meg what do you all think bout puttng some of oru posts into

the manuals

>

> Michele,

> Oh yes!! I do think we are on the same page and I love that we are all

> sharing in the writing of the chapter!

>

> pam

>

>

>

[Guest guest]

Kristy,

You are sadly walking the path Patty traveled. Know there is hope. Patty is

incredibly social and confidant.

I do have to say although I implement social stories for a few of my students

and truly believe in them I would never have used any for Patty.

The ways Patty learns is not by reading, reciting, or even discussing the who

what where and when. Patty learns through EXPERIENCE! But the experience

has to be appropriate and facilitated. You then slowly step back bit by bit,

then totally. Every once in a while you have to step back in, but that's OK.

That is the crux of all of this! It is my belief that our children learn

almost everything through experience.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to