Re: Aubrie at church

[Guest guest]

Michele,

There have been so many positive posts and you know how I feel but there also

has to be reality here too. The world is hard. The world isn't that

accepting. It is a battle all the time for individuals who have disabilities.

You are getting to the point in Aubries age where the gap is going to grow.

You are starting to see that. Aubrie is a sweet little angel and you only

want what is what every one wants. And you should. And you are right. So did

I and so do I. But it isn't going to be that easy. You are going to have to

find some sort of strength within you that you never thought you had.

Patty too was such a cutie. We lived in a small town and she went to many

parties and play dates when she was little. She was on the park and rec sports

teams and was very included. But they included her because of her

disabilities, not because they wanted to know Patty. There is a difference.

There were

only a few who took the time to know who she was.

As she grew all these adults who were trying to support her were always with

her in school That seperated her from social opportunities. She didn't have

an intervener and she missed those subtle learning clues other kids learn and

grow on. As recess became more physical and sports changed with the

childrens growth Patty was unable to keep up. That excluded her. So beyond the

disabilities Patty lacked experiencial learning for social growth. She grew and

is

incredibly social, as you know but it took work. My oh my is she social! Oh

and goodness, she felt very insulted when people wanted to be with her

because of her disabilities. She is Patty. She wants understanding and maybe

empathy but definately not pitty.

Through those changes as that gap grew it was as though I was dealing with

her disabilities and accepting them all over again. And I was. But you know,

that is alright. I let myself feel, I would cry in the shower because it pains

your heart so to see your child excluded and hurt, but then I would put that

smile on my face and move on for Patty. People can be cruel, especially

teenagers. Patty would sometimes do things just to be accepted. Finally she

learned how to stand up for herself. It got her into trouble sometimes but at

home I would praise her for standing up to intollerance. I would tell her she

has disabilities but that doesn't mean she is any less or any more than anyone

else. All of us are different and I would point out peoples flaws, and then

point out their exceptions. There is something good in everyone and something

not so good in everyone. We are all created equally. Then I would talk to her

about how blind people can be to life and that she is gifted in so many

areas, especially her remarkable intuition.

Now that Patty graduated and is here at home still waiting for her life to

begin it is again obvious how difficult it is for a person with disabilities to

have the same or similar opportunities others have. Most of that is due to

outside forces. I can't tell you how that hurts me to see her, so full of life,

so able, so--- Patty! She has skills, she has dreams, she has a direction.

My job as a mother is still to try to find a way for her to seperate from us.

That is the scarriest ever but it is also what needs to be done. People

aren't accepting. She can't get a job, she can't to go to school college and

she

can't get into an appartment without outside help. That is just the way it

is. But also she can have a carreer, she can live on her own (with some

guidance here and there), she can have friends, she can, she can, she can do

almost

everything. We as parents just have to keep our chins up and make things

happen.

Life isn' fair. Life is hard. We get depressed. It is always outside

forces that make things the hardest. Right now you need to instill in Aubrie

confidance within herself. You have to show her how strong she is. You have to

show her forgiveness but not let things continually occur. And you do that also

by being a roll model. Walking away is the hardest thing Patty learned but

that just might be because that is one of my biggest flaws.

My strongest advice is to point out thingsto her like how funny she is, what

a nice person she is. Find her beauty and then run with it. And develop

further things she is interested in. Let her grow up to become that beauty she

is. She is now a bud growing into a beautiful flower. What kind of flower we

just don't know yet. Don't let people pull out her petals.

Then as life goes on let go of other peoples ideas and opinions. Show her

how to do that. Also show her there are tons of wonderful opportunities out

there for her. You know she really will be a happy adult. Getting there is the

hard part.

Take care,

Bonnie, mom to Kris 22, Patty CHARGE 20, and wife to

[Guest guest]

Thanks, Bonnie. It is very hard to balance enough optimism to get up in

the morning and function with a smile on your face and enough reality to

keep up with all the work. I guess I'm looking ahead trying to figure

out what I can do to make the way as easy as possible. I will keep your

post (and maybe share it with her IEP team) as a reminder of things to

keep in mind.

Can't think about it more now cuz it's almost time for the bus-

Michele W

[Guest guest]

you know... Aubrey's experiences mold your son's view of the world

too... he will grow to be an exceptional man because he too will know

what really matters in life -- and boy am i glad messy closets

don't!!!

Cole :-)

On Tue, 14 Dec 2004 21:54:00 -0600, Michele Westmaas

wrote:

> Cole-

> What wisdom! I no longer find the little things annoying that used to

> be big to me -- messy closets, wrinkled clothes, etc. My friends still

> worry about " normal " stuff, but my whole measurement of what is to be

> worried about, etc is different now. Of course, Aubrie is growing up

> with a different measurement than her peers. I knew that her

> experiences shaped her views -- but you said it in a way that clarified

> that for me. Since my first post, I have been looking at some friends'

> kids who are socially self-conscious and I really feel sorry for them.

> A child shouldn't be holding back. I raised my son to be comfortable

> with who he is also -- and he's a wonderful kid who is not a follower,

> who can make choices that contradict what his peer group is doing, and

> who can be friends with kids from all the different social groups. I am

> proud of that in him -- and of course I want the same for Aubrie.

>

> We all butt in here whenever we have something to add -- even if the

> conversation isn't directed at us. Feel free to chime in anytime. I

> hope that we have all learned to be forgiving when someone (on the

> rarest of ocassions) says something we don't agree with. Usually it's a

> miscommunication rather than a truly hurtful intent.

>

> Michele W

> Aubrie's mom

>

>

>

>

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

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

I hope that he will be a wonderful man. Although I have seen that it

can go either way regardless of upbringing. It's a bit frightening.

But, for now, he is showing signs of " wonderful-ness " . He's a great kid

-- has his teen-age moments -- but they are minimal. With him and

Aubrie, I rejoice in the good and quietly wince, worry, and try to

forget the not-so-good (which is always just little minimal hints --

never anything truly awful for either of them). I am a lucky mom to

have 2 truly great kids. I tell them every day, but I don't think they

believe me. They just think I'm a sappy mom.

Michele W

[Guest guest]

they'll never believe YOU you're just mom -- someday someone in the

world will tell them -- a trusted friend or teacher or a stranger

who's quite perceptive and then maybe they will believe it -- they

might even admit it!

it's funny how even i find myself not admitting to the good in me --

even when other people observe it i think that they are just seeing

something that isn't there -- but i can spot it in other people

quickfast... with a little good fortune and a lot of tenacity your

kids will learn their places in the world - not in your time or thier

time but in God's time and Time's time.

just a thought

Cole :-)

[Guest guest]

This is all so true. I really appreciate your wisdom. How lucky we

are that you joined us this year!

Michele W

>

[Guest guest]

Michele,

God grant me the serenity to accept the things I cannot change

The courage to change the things I can

And the wisdom to know the difference

Many of the discussions we take on here lead me back to this prayer-

I'm not a very religious person but this fits. Maybe the answer to

what you need is endurance to sustain you over the long haul as you

fight daily battles one at a time. It will be hard for all of us-

if it were easy we would not need eachothers support- nor would we

appreciate small victories so deeply. Keep on keepin on... hee hee

Mark

> -

> It helps to realize that mourning that grief is natural and

necessary.

> Then I won't be so worried when those feelings come up. I can

accept it

> when it visits and then go on. I know that Aubrie will find a

place and

> I expect it to be an amazing one -- but it is so frustrating to

think of

> obstacles she will face. But, you know, I am wondering now if I

spend

> enough time worrying about my son's future and maximizing his

> potential! I guess with him I know that the only obstacles he is

likely

> to face are the ones he puts in front of himself. I try to raise

him in

> a way that will minimize those self-inflicted obstacles, but I

know that

> much of it is out of my hands. Now that I said that, why can't I

accept

> that much of Aubrie's obstacles, whether internal or external, are

also

> out of my control?

>

> I'm thankful for a safe place to think out loud and get supportive

and

> helpful feedback.

>

> Michele W

> Aubrie's mom

>

> >

[Guest guest]

Michele,

isn't negative either. I think it's part of their coping skills they

learn while trying to survive. It seem to be another part of CHARGE like the

" never give up " we hear about on this list all the time. It's easy for me to

say because I've been through it and is older but, try to " sit back and

live and love life " through Aubrie's eyes daily and just keep moving forward.

Lynn

Re: Aubrie at church

You are so right. She does love life to the fullest. And she enjoys

everything with her whole being. I hope that she keeps that as she

matures. It is such a wonderful way to be. If she could hold on to

that while still understanding social expectations -- then she could

choose to " fit in " or not, all the while loving herself completely. She

just knows nothing bad. She is full of gratitude, positivity, joy...

With all she's been through, I don't know how negativity has been kept

out of her.

Michele W

LEM wrote:

> Michele,

> I don't have any professional answers, but having spent some time

> with Aubrie at the conference, my observation is she is just

> uninhibited. She " loves life to the fullest " . I wish more of us

> could be like that so it would be the " norm " and being still and

> somber was " unusual " . Just my thoughts.

> I am so glad she feels " at home " in so many places. It is far

> better she be outgoing then shy.

> Blessings and Hugs,

> Lynn

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

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

i'm not wise -- just opinionated!

Cole

On Wed, 15 Dec 2004 09:46:48 -0600, Michele Westmaas

wrote:

> This is all so true. I really appreciate your wisdom. How lucky we

> are that you joined us this year!

>

> Michele W

>

> >

>

>

>

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

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

The same could be said for all of us who respond often, but I prefer to

think we are passing on experiences that may help someone else have an

easier path.

Kim L

>

> i'm not wise -- just opinionated!

> Cole

>

>

> On Wed, 15 Dec 2004 09:46:48 -0600, Michele Westmaas

> wrote:

>> This is all so true. I really appreciate your wisdom. How lucky we

>> are that you joined us this year!

>>

>> Michele W

>>

>>>

>>

>>

>>

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

>> the CHARGE Syndrome Foundation.

>> For information about the CHARGE Syndrome

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

>> please contact marion@... or visit

>> the CHARGE Syndrome Foundation web page

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

>> 7th International

>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

>> Information will be available at our website

>> www.chargesyndrome.org or by calling 1-. In Canada, you may

>> contact CHARGE Syndrome Canada at 1- (families), visit

>> www.chargesyndrome.ca, or email info@.... Thank you!

>>

>>

>>

>>