RE: Profoundly Disempowered

[Guest guest]

Yuka,

You always have a wonderful way of telling these stories and I really love

reading them.

This one in particular really got to me and I feel it relates to Jack. When

you describe a younger you could be talking about Jack. He is also

fully integrated in mainstream school and is a very hardworking and studious

child. He takes everything so seriously and works so hard in class and also

worries about being able to his maths etc.

He never complains and is also such a cheerful wee boy but it brakes my

heart that he has to try so hard and that he seems to know himself that he has

to

try so much harder than his peers.

He has also started to realise and notice that he is 'different' and he said

the other week something about when he grew up and was a 'normal' boy that

he would be able to do the things he can't do just now

I'll be looking out for further messages from you and any ideas you have to

deprogram as I will follow suit with Jack.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

Dear Yuka,

It is a heartbreaker to actually " see " , and feel what our kids go thru.

But what I see in your story is TRIUMPH of spirit, and personal SUCCESS.

And that horribly sad feeling, I believe, belongs to us, not to them.

No doubt they wish their bodies, minds, worked the same as everyone else's,

but in Spirit, we are all the same, nothing can compromise that.

Grace has allowed them a level of acceptance, and of determination to do all

they can with what they have, oftentimes much better than people without

challenges who don't appreciate or respect what they do have. I know you've seen

inspire others to take stock of themselves, and what they are

accomplishing.

, also, is strongly motivated to academic success, and she is excited

and

optomistic about her future, because she trusts that motivation, and can

look back and draw strength from meeting all those challenges. I know the

stone walls she'll face-and like U-I will try to make sure that it's me who

will

confront them, not her. And yet, there will be many each day that we cannot

save them from.

As said himself, it builds character, and in the end, will be a good

thing. Wow, what genius. (I have to stop and breath on that one.)

, and all our children, are the athletes in the game of life, and they

are all gold medal winners. there's one more thing I'd like to say, on a

page 2. (here goes Ms.Wordy!!)

[Guest guest]

Hey Yuka,

When I read this post, I think it's similiar to my experience at work place

(at highschool and college, well, not really). Cuz, I remembered telling my old,

former highschool teacher from the D.H.H. program, Cannon and her husband

this past xmas about my problems at work. Remember, I used to complained/whined

about my problems at work? Cuz, no one is giving me enough chance, right? I used

to groom and bathe the dogs, but I stopped doing that ever since new workers

kept on coming in, sigh! Yeah, I know what you mean about when he was in

elementry school. Sigh, I wish that this world would be a better place, where

everyone would accept who we are. And let us do stuff what we want to do, and we

got rights ya know!

I can't believe that 's highschool send you a letter saying he's not

gonna graduate in 2007!? What were they thinking!? If I were you, I would go

over to his school and have a talk with them, or send them a letter (or you can

do both). My mom would do that, if that did happened to me back at highschool.

Anyway, those are my thoughts and suggestions. Take care, adios amigo!

Chip

Yuka Persico wrote:

Ok, here is my sad story.

When was in fifth grade, he was mainstreamed for Social Studies. They

were studying World War II. For reasons I cannot begin to fathom, the

teacher asked the students to line up in two lines - one for the kids who

were " for the internment " and the other line for the kids who were " against

the internment " . was the only child who lined up for the internment.

The teacher thought it was funny. I did not. (there are other brilliant

stories about this wonderful teacher of regular ed. She asked to

stand up and tell the class what it felt like to be disabled. She made his

mailbox impossible for him to reach and expected him to ask a classmate for

help several times a day to reach his papers....) I asked why he did

that, and he explained to me that even though it was unfair and unjust it

would build character and in the end be good for the person. It was the

first light I had of how my good natured roll with the punches boy

internalized some of the conditions of his life.

Recently I was watching a video of 's fourth birthday party. I never

saw the things then that I could now. I saw , four years old,

pretending to eat from an empty plate among all the other kids. I saw a

look in his eyes I never recognized before. I didn't notice that sometimes

he felt left out. I never noticed how hard he worked - tirelessly,

constantly. We all just admired his dynamo, and his cheeriness. It was all

we could do to keep up with him and care for him.

A few weeks ago the special ed department sent us a letter saying that

would not be able to graduate in 2007 because he had not met two

requirements. This letter was in error - as had more than exceeded

both requirements. I knew better than to mention it to before I

resolved it. After resolution (including much laughter between me, the case

coordinator and the high school counselor) I decided to share the whole

story with . He burst into tears. Even though it had been resolved -

he was emotionally prepared to just have to meet the requirements all over

again. That was his solution to wanting to graduate with his class. I

realized that when unfair things happen to he has the strong feeling

that he has to deal with it - that he has no choice in it. That is just how

it is.

I am wondering exactly how far and how deep this runs in his psyche and what

I can do to deprogram a lifetime of medical intervention and superhuman

efforts (on his part).

This is a boy who is fully mainstreamed at the highest testing high school

in our area and is 19th in a class of 270.

It just broke my heart.

with love and hope-

yuka

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

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

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Yuka,

I can't imagine how to go about changing the way he thinks about dealing with

things. I know I see Kennedy working so much harder than the other kids (her

homework is sometimes 95 mins at night when the others it takes about 20-25 and

she is in grade 2 -- but she WANTS to do it all the same as the other kids, she

KNOWS what they are doing and wouldn't have it another way...sigh!). I can

certainly, like Elaine, forsee her being like in some respects and I will

be curious as to you all go about this. It's so hard, especially when they

start to " realize " the difference - she asked me a few weeks back about her

thinning hair area under her hearing aid band, " momma, do the people see that? "

She didn't want them to...just the tip of the iceberg, I know ...

The Kings & Queens of Compensation these kids are - it just breaks your heart

sometimes all they have to do just to make it in " our " world...

Hugs to you & he,

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

Thank you for all your words and the heart behind them.

My concern is that draws the line at what he is willing to accept and

willing to overcome far too generously. He doesn't have to fix it all by

his own efforts. He doesn't have to yield to the demands of everyone who is

in authority.

I think in a way it is worse because he has succeeded so well so far into

the process.

I look at my two medically unremarkable children and I marvel at the

autonomy and self expression built into them from an early age in so many

aspects of their lives. From clothing preferences, food preferences,

independence and opportunity to make error at school and distance and

permission required from physicians. None of these have been built into

's life. Specialists and aids in the school and in the medical field

all take charge, ask, prod, demand and decide - often forgetting the person

in their efforts to best serve the childs needs as they see it.

Without taking anything away from 's willingness, perseverance, efforts

and wonderfulness - I also want for him to have a better sense of where the

line could be. To not always be doing his best - but sometimes just doing

what he enjoys )

Does that make much sense?

Yuka

Re: Profoundly Disempowered

> As said himself, it builds character, and in the end, will be a good

> thing.

[Guest guest]

Thank you for all your words and the heart behind them.

My concern is that draws the line at what he is willing to accept and

willing to overcome far too generously. He doesn't have to fix it all by

his own efforts. He doesn't have to yield to the demands of everyone who is

in authority.

I think in a way it is worse because he has succeeded so well so far into

the process.

I look at my two medically unremarkable children and I marvel at the

autonomy and self expression built into them from an early age in so many

aspects of their lives. From clothing preferences, food preferences,

independence and opportunity to make error at school and distance and

permission required from physicians. None of these have been built into

's life. Specialists and aids in the school and in the medical field

all take charge, ask, prod, demand and decide - often forgetting the person

in their efforts to best serve the childs needs as they see it.

Without taking anything away from 's willingness, perseverance, efforts

and wonderfulness - I also want for him to have a better sense of where the

line could be. To not always be doing his best - but sometimes just doing

what he enjoys )

Does that make much sense?

Yuka

Re: Profoundly Disempowered

> As said himself, it builds character, and in the end, will be a good

> thing.

[Guest guest]

Thank you for all your words and the heart behind them.

My concern is that draws the line at what he is willing to accept and

willing to overcome far too generously. He doesn't have to fix it all by

his own efforts. He doesn't have to yield to the demands of everyone who is

in authority.

I think in a way it is worse because he has succeeded so well so far into

the process.

I look at my two medically unremarkable children and I marvel at the

autonomy and self expression built into them from an early age in so many

aspects of their lives. From clothing preferences, food preferences,

independence and opportunity to make error at school and distance and

permission required from physicians. None of these have been built into

's life. Specialists and aids in the school and in the medical field

all take charge, ask, prod, demand and decide - often forgetting the person

in their efforts to best serve the childs needs as they see it.

Without taking anything away from 's willingness, perseverance, efforts

and wonderfulness - I also want for him to have a better sense of where the

line could be. To not always be doing his best - but sometimes just doing

what he enjoys )

Does that make much sense?

Yuka

Re: Profoundly Disempowered

> As said himself, it builds character, and in the end, will be a good

> thing.

[Guest guest]

Dear Yuka,

Yes, it makes perfect sense to me.

Just the other day, I included in a post some of 's most pressing

current challenges, and that was #1. How to protect herself from feeling such

anxiety about possibly not performing to everyone's expectations. How to not

be

defeated and depressed because someone who should have known better, passed

her teaching inadequecies onto , telling her, " I'm dissapointed in you. "

(Thank God, I am several towns removed from the school..) she is very

frustrated right now, because her counselor wants her to go on to college, and

she is TIRED of school. Not that she understands what she might face trying

to get a job, and performing there successfully after being SO led for so many

years. And not that she is a mature young woman, ready to strike out on her

own.

It's a double edged sword. She needed to be led, and yet look where thats

left us.

(and she too has suffered the ignorance of many people, as has , and

our other young adults.)

Even I did what I always do-and pretty much excluded her from the

conversation with the neurosurgeon, trying to shield her from what to me were

such ugly

facts. While we were downstairs waiting for the car, she said " So, are they

going to shave my head? " I said no, just in the back of your neck, and she

said " oh, I thought they were going to cut here-and she pointed from the top

of her head down to her neck. And it dawned on me, what a terrible injustice

I had just committed by robbing her of right to ask and to know for herself.

Sometimes, there are very few avenues for comfort or direction for our

hearts.

I know that she and I are soon going to face this surgery, and after that,

she'll be expelled out of those protective halls at Perkins, and into the great

unknown again.

She has such an inner strength, more than I. I have fear of the unknown. I

want to do the best job I can possibly do-and I am willing to pull from any

source of wisdom and mercy I can find. She has her cell phone, so she can

call whenever..and I try to give her insight into the dynamics of her current

experiences (try to show the bigger picture), so that she will look for the

same, but I have no real answers.

I am trusting that she'll make it through each day as she has the day

before. I trust that TIME is her biggest allie, and that problems won't come

in

bigger doses than we can handle. and that as time and maturity progress, she

will learn to think outside that box these kids have been in their whole lives

and be ready to live, successfully independent.

The one thing I see, is that her experience may have diminished her God

given right to self-expression, but it has not diminished her spirit.

The path I've chosen (again) is to bring her into awareness of her inner

self, her soul self, where guidance is available. Right now, its the only

thing I know to do.

[Guest guest]

Dear Yuka,

Yes, it makes perfect sense to me.

Just the other day, I included in a post some of 's most pressing

current challenges, and that was #1. How to protect herself from feeling such

anxiety about possibly not performing to everyone's expectations. How to not

be

defeated and depressed because someone who should have known better, passed

her teaching inadequecies onto , telling her, " I'm dissapointed in you. "

(Thank God, I am several towns removed from the school..) she is very

frustrated right now, because her counselor wants her to go on to college, and

she is TIRED of school. Not that she understands what she might face trying

to get a job, and performing there successfully after being SO led for so many

years. And not that she is a mature young woman, ready to strike out on her

own.

It's a double edged sword. She needed to be led, and yet look where thats

left us.

(and she too has suffered the ignorance of many people, as has , and

our other young adults.)

Even I did what I always do-and pretty much excluded her from the

conversation with the neurosurgeon, trying to shield her from what to me were

such ugly

facts. While we were downstairs waiting for the car, she said " So, are they

going to shave my head? " I said no, just in the back of your neck, and she

said " oh, I thought they were going to cut here-and she pointed from the top

of her head down to her neck. And it dawned on me, what a terrible injustice

I had just committed by robbing her of right to ask and to know for herself.

Sometimes, there are very few avenues for comfort or direction for our

hearts.

I know that she and I are soon going to face this surgery, and after that,

she'll be expelled out of those protective halls at Perkins, and into the great

unknown again.

She has such an inner strength, more than I. I have fear of the unknown. I

want to do the best job I can possibly do-and I am willing to pull from any

source of wisdom and mercy I can find. She has her cell phone, so she can

call whenever..and I try to give her insight into the dynamics of her current

experiences (try to show the bigger picture), so that she will look for the

same, but I have no real answers.

I am trusting that she'll make it through each day as she has the day

before. I trust that TIME is her biggest allie, and that problems won't come

in

bigger doses than we can handle. and that as time and maturity progress, she

will learn to think outside that box these kids have been in their whole lives

and be ready to live, successfully independent.

The one thing I see, is that her experience may have diminished her God

given right to self-expression, but it has not diminished her spirit.

The path I've chosen (again) is to bring her into awareness of her inner

self, her soul self, where guidance is available. Right now, its the only

thing I know to do.

[Guest guest]

Dear Yuka,

Yes, it makes perfect sense to me.

Just the other day, I included in a post some of 's most pressing

current challenges, and that was #1. How to protect herself from feeling such

anxiety about possibly not performing to everyone's expectations. How to not

be

defeated and depressed because someone who should have known better, passed

her teaching inadequecies onto , telling her, " I'm dissapointed in you. "

(Thank God, I am several towns removed from the school..) she is very

frustrated right now, because her counselor wants her to go on to college, and

she is TIRED of school. Not that she understands what she might face trying

to get a job, and performing there successfully after being SO led for so many

years. And not that she is a mature young woman, ready to strike out on her

own.

It's a double edged sword. She needed to be led, and yet look where thats

left us.

(and she too has suffered the ignorance of many people, as has , and

our other young adults.)

Even I did what I always do-and pretty much excluded her from the

conversation with the neurosurgeon, trying to shield her from what to me were

such ugly

facts. While we were downstairs waiting for the car, she said " So, are they

going to shave my head? " I said no, just in the back of your neck, and she

said " oh, I thought they were going to cut here-and she pointed from the top

of her head down to her neck. And it dawned on me, what a terrible injustice

I had just committed by robbing her of right to ask and to know for herself.

Sometimes, there are very few avenues for comfort or direction for our

hearts.

I know that she and I are soon going to face this surgery, and after that,

she'll be expelled out of those protective halls at Perkins, and into the great

unknown again.

She has such an inner strength, more than I. I have fear of the unknown. I

want to do the best job I can possibly do-and I am willing to pull from any

source of wisdom and mercy I can find. She has her cell phone, so she can

call whenever..and I try to give her insight into the dynamics of her current

experiences (try to show the bigger picture), so that she will look for the

same, but I have no real answers.

I am trusting that she'll make it through each day as she has the day

before. I trust that TIME is her biggest allie, and that problems won't come

in

bigger doses than we can handle. and that as time and maturity progress, she

will learn to think outside that box these kids have been in their whole lives

and be ready to live, successfully independent.

The one thing I see, is that her experience may have diminished her God

given right to self-expression, but it has not diminished her spirit.

The path I've chosen (again) is to bring her into awareness of her inner

self, her soul self, where guidance is available. Right now, its the only

thing I know to do.

[Guest guest]

Yuka,

I don't even know what to say. I am going away for a week's vacation and am so

glad that my " stop mail " starts tomorrow--as so profoundly sad your post is, I

am so glad I did not miss it. And at that, I must stop because I am

speechless/wordless and need to think about this--you, , and what this all

means.

with an ache in my heart.

pam

[Guest guest]

Yuka,

I don't even know what to say. I am going away for a week's vacation and am so

glad that my " stop mail " starts tomorrow--as so profoundly sad your post is, I

am so glad I did not miss it. And at that, I must stop because I am

speechless/wordless and need to think about this--you, , and what this all

means.

with an ache in my heart.

pam

[Guest guest]

Yuka,

I don't even know what to say. I am going away for a week's vacation and am so

glad that my " stop mail " starts tomorrow--as so profoundly sad your post is, I

am so glad I did not miss it. And at that, I must stop because I am

speechless/wordless and need to think about this--you, , and what this all

means.

with an ache in my heart.

pam

[Guest guest]

Yuka-

My heart just drooped. I'm sure Aubrie shares some of 's

" disempowerment " . With all of the unusual life circumstances our kids have

to handle, it's amazing that they become the wonderful human beings they

are. I don't see how they can not have some underlying issues given all

that they have to endure -- whether it's medical procedures or other

people's attitudes. We, as parents, have to work so hard to get through

every day with a smile on our face, that I'm sure we miss many clues to the

internal struggles of our kids. Even if we are not in denial, human nature

would keep us from seeing some of it. I'm too tired after being away for

the weekend to give a proper response, but your post really touched me.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Elaine-

What a powerful clue that comment was -- about growing up to be a 'normal'

boy. I guess that's one a mom can't ignore.

Today, in the van, I couldn't hear something was hollering up to me

from the back. He said, " You're deaf!! " . Aubrie replied, " , you know

what? I'm the one who's deaf. " Now, how do I perceive that? She is trying

so hard to understand who she is and how she fits into this world. I feel

at a loss to help her sometimes.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

-

Wow. Thanks for adding the positive twist to that. We all needed another

way to think about it.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

yep shes the one thats deaf LOL

>

> -

> Wow. Thanks for adding the positive twist to that. We all needed another

> way to think about it.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Yuka, I don't know what else to say but this: in all the posts I've

read that you've written, I've been so impressed by your strong,

positive nature and how that inevitably has to have affected your son,

. I have thought on more than a few occasions how I hope I can

be like that with Carmen, rather than feeling sad and helpless for

her. I've seen 's picture on the link for pics and have smiled

at him just in the few things I know of him through you. I see his

picture, read about him, and see how you've dealt with it and hope I

can as good of a job for my dauther. I don't think we as parents of

these special individuals can take away what they've indured--I can

only hope that we provide them with common sense and integrity as you

have so obviously done with . It's okay to feel sad about some

of this, however, I do think that many kids internalize and feel a

sense to overachieve due to their peers and over time that can help

them in their adult lives. This goes for all kids and perhaps

would have had some of this feeling regardless of his history. As for

his regular ed social studies teacher--it makes me cringe--and build

strength to be ready to deal with it if the time comes.

Take care and be proud!!!

..

>

> Ok, here is my sad story.

>

>

> When was in fifth grade, he was mainstreamed for Social

Studies. They

> were studying World War II. For reasons I cannot begin to fathom, the

> teacher asked the students to line up in two lines - one for the

kids who

> were " for the internment " and the other line for the kids who were

" against

> the internment " . was the only child who lined up for the

internment.

> The teacher thought it was funny. I did not. (there are other

brilliant

> stories about this wonderful teacher of regular ed. She asked to

> stand up and tell the class what it felt like to be disabled. She

made his

> mailbox impossible for him to reach and expected him to ask a

classmate for

> help several times a day to reach his papers....) I asked why

he did

> that, and he explained to me that even though it was unfair and

unjust it

> would build character and in the end be good for the person. It was the

> first light I had of how my good natured roll with the punches boy

> internalized some of the conditions of his life.

>

> Recently I was watching a video of 's fourth birthday party. I

never

> saw the things then that I could now. I saw , four years old,

> pretending to eat from an empty plate among all the other kids. I saw a

> look in his eyes I never recognized before. I didn't notice that

sometimes

> he felt left out. I never noticed how hard he worked - tirelessly,

> constantly. We all just admired his dynamo, and his cheeriness. It

was all

> we could do to keep up with him and care for him.

>

> A few weeks ago the special ed department sent us a letter saying

that

> would not be able to graduate in 2007 because he had not met two

> requirements. This letter was in error - as had more than

exceeded

> both requirements. I knew better than to mention it to before I

> resolved it. After resolution (including much laughter between me,

the case

> coordinator and the high school counselor) I decided to share the whole

> story with . He burst into tears. Even though it had been

resolved -

> he was emotionally prepared to just have to meet the requirements

all over

> again. That was his solution to wanting to graduate with his class. I

> realized that when unfair things happen to he has the strong

feeling

> that he has to deal with it - that he has no choice in it. That is

just how

> it is.

>

> I am wondering exactly how far and how deep this runs in his psyche

and what

> I can do to deprogram a lifetime of medical intervention and superhuman

> efforts (on his part).

>

> This is a boy who is fully mainstreamed at the highest testing high

school

> in our area and is 19th in a class of 270.

>

> It just broke my heart.

>

> with love and hope-

>

> yuka

>