Re: discrimination

[Guest guest]

Hi Jeanie,

I am so sorry you and MacKenzie had to go through that! Its not just a small

town thing, its a big city thing too. I used to be an avid rider, and not

therapy, I mean jumping, barrel racing, the works. Loved it! As soon as I moved

to the big city, no place will let me just ride. Its very frusterating. I have

promised myself once Im done school and working full time Im buying my own horse

and no one is going to tell me what I can or cant do with it!!

Good luck with everything. I hope it will work out for you guys.

Nieder

discrimination

Today I feel like I've been slapped in the face from my community. The local

horseback riding club has been denied insurance to have MacKenzie participate in

their program. Although I was hoping she would theraputically benefit from the

riding, I mostly wanted it for her enjoyment and would have signed any waiver,

etc. Two hours later, the lady that we signed up with to take piano lessons,

called and politely changed her mind about taking on MacKenzie, she doesn't feel

comfortable with her and fears that we would be wasting our time.

I guess this is something that I wasn't expecting. Living in a little town has

advantages but many limits as well. This is kind of scary for me and I'm afraid

it may be the sign of things to come. Any thoughts?

Jeanie Colp

mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 10

[Guest guest]

Jeanie,

How sad that this kind of crap is still going on - this makes me sick. I can't

even imagine - we have NEVER had this kind of reaction with Kennedy so it really

surprises me. Did you put it right back to them (esp. the piano teacher) and

let them know how discriminating they were being? Sometimes people just need to

hear it....

Give me their #, I'd be happy to call.. not that it would probably do any good

but I think some people actually believe they aren't being discriminatory and I

think they need to know that they ARE...

Call me if you want,

Home: lisaweir@...

Work: lisa.weir@...

Phone:

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

[Guest guest]

Jeanie, I, too, am willing to call. I think, without even knowing it, we put up

with this sort of thing when was younger. There were various truly

terrible outcomes, as I think of them today. !) I was not comfortable

introducing to new activities (I remember our local sports group for

the " handicapped " (not Special Olympics but Sporting Chance) not being

able to figure out how to add K. to their basketball group, another time

when one very kind man understood that needed to see where the

ball would go while bowling, and on and on; in other words, it was a

mixed bag. I have come to the rather hard belief that discrimination has to

be called by its name. I feel ill at the battles, but know that you are far

from

alone. Martha

[Guest guest]

Jeanie-

Today I am having a pity party because I'm tired of running to appt

after appt instead of having an enjoyable summer. Then I read your

post. I felt that slap loud and clear. I can't believe it. We are in

a small town too and I haven't yet felt any real discrimination against

Aubrie. It's hard to believe that people can be that way. I am trying

to put myself in their shoes to even imagine that they are

well-intentioned. I don't know what to say. I'm as new to this as you

are. On the one hand, you don't want Mac to spend time with anyone who

is less than accepting of her, but on the other hand, she has every

right to participate in those programs! Do you have an equivalent to

our ADA (Americans with Disabilities Act)?

I am paid handsomely by the state to teach disability awareness to child

care providers. It makes me sick that they'd pay me so much to teach

people something that should be a given. I guess now I see why it may

be necessary.

Michele W

Aubrie's mom 7 yrs

>

[Guest guest]

Jeanie,

When something like this happens it is hard. We lived in a small community

too and it happened to Patty at times. I believe you do have to call it what

it is to their faces and everywhere else. But don't do it in an angry way or

the reasoning gets lost.

Stuff like this happens all the time. Sad to say the horseback riding isn't

something you can really legally fight if they are saying there might be

physical danger which they are not insured for. It isn't a " right " to take

riding

lessons and if the company is saying it is for insurance reasons then they can

say no. I know because I have tried to fight things like that. Anyway, run

fast from people like that. They wouldn't understand no matter how hard you

slap them in their own faces.

I just don't get the piano teachers comment. She must be an idiot. What's

her problem? She would waste MacKenzie's time. I would speak up there too.

For both of these I would write a letter to the town paper, call your

Selectman to keep him aware of things, and talk about this often with people in

the

community. Small towns can be great but then again they can be HARD and

opinionated. I always voiced what is wrong and voiced even louder what was

right.

When stuff like that happened to Patty she knew. I always told her everyone

has something " different " to deal with. Some have disabilities others can't

see called ignorance. Those who learn will grow and thrive. Those that don't

will live in a world a hate. Don't let that in your heart.

Making people aware is enlightening for those who listen.

I am sorry for your day. I am sorry for MacKenzie. Go out and continue with

the good people and don't wast too much of your time and energy with the

fools. That's the good thing about small towns. You know who is who.

Bonnie, Mom to a 22, Patty CHARGE 20, and wife to

[Guest guest]

Ellen,

How right you are. You're great!

Bonnie

[Guest guest]

Jeanie,

I have no answers and can only express my pain and sadness that you have

been hit with this on top of everything else.

Kim

> Today I feel like I've been slapped in the face from my community. The local

> horseback riding club has been denied insurance to have MacKenzie participate

> in their program. Although I was hoping she would theraputically benefit from

> the riding, I mostly wanted it for her enjoyment and would have signed any

> waiver, etc. Two hours later, the lady that we signed up with to take piano

> lessons, called and politely changed her mind about taking on MacKenzie, she

> doesn't feel comfortable with her and fears that we would be wasting our time.

>

> I guess this is something that I wasn't expecting. Living in a little town has

> advantages but many limits as well. This is kind of scary for me and I'm

> afraid it may be the sign of things to come. Any thoughts?

>

> Jeanie Colp

> mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 10

>

>

>

[Guest guest]

Jeanie,

I would feel exactly the same as you. I feel so sad and angry that

may encounter barriers in accessing sports or activities in the future.

I think I would feel compelled to write a note to the Piano teacher simply

expressing disappointment and sadness that she won't get to teach and LEARN

from teaching MacKenzie. I'd also say I hope I will be able to find another

teacher who will not pre-judge / practise discrimination so my child will be

able to enjoy learning music just like every other child is entitled to.

A note would alert her to her discriminatory behaviour and it's effect on

others, and also have the added benefit for you of putting it all down on

paper, which I find can be so free-ing and energising once done. (Probably

why list servs work so well!) Taking a little bit of action, however small,

helps me feel less helpless and redresses the balance.

is

>

> Today I feel like I've been slapped in the face from my community. The

> local horseback riding club has been denied insurance to have MacKenzie

> participate in their program. Although I was hoping she would theraputically

> benefit from the riding, I mostly wanted it for her enjoyment and would have

> signed any waiver, etc. Two hours later, the lady that we signed up with to

> take piano lessons, called and politely changed her mind about taking on

> MacKenzie, she doesn't feel comfortable with her and fears that we would be

> wasting our time.

>

> I guess this is something that I wasn't expecting. Living in a little town

> has advantages but many limits as well. This is kind of scary for me and I'm

> afraid it may be the sign of things to come. Any thoughts?

>

> Jeanie Colp

> mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 10

>

>

>

[Guest guest]

oh how horrid i sometimes feel discriminated against by doctors eather

theyve heard of charge and thingit is retartdaytion not growth retard

or they just dont understand well hugs ellen

> Today I feel like I've been slapped in the face from my community.

The local horseback riding club has been denied insurance to have

MacKenzie participate in their program. Although I was hoping she would

theraputically benefit from the riding, I mostly wanted it for her

enjoyment and would have signed any waiver, etc. Two hours later, the

lady that we signed up with to take piano lessons, called and politely

changed her mind about taking on MacKenzie, she doesn't feel

comfortable with her and fears that we would be wasting our time.

>

> I guess this is something that I wasn't expecting. Living in a little

town has advantages but many limits as well. This is kind of scary for

me and I'm afraid it may be the sign of things to come. Any thoughts?

>

> Jeanie Colp

> mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 10

>

>

>

[Guest guest]

michelle i agree with you you in a small town me sydney bout the

size of new york wel never been there but i blieve it is big and sos

here well what im saying is that here in sydney aus i have had some

siscrimination so i dont think the size of the twon matters you get

people who talk to you as if you dont understand and then there are

people that i cant stop talking and asking questions of hope this

makes sense we have a anti discrimination act and some of my friends

participated in the international day of disablity celebratiions

last october i guess what im saying is that well the mthing for the

day was dont dis my ability so thats what i want to say to all those

out there dotn dis my ability!!!!!!111 ellen

> Jeanie-

> Today I am having a pity party because I'm tired of running to

appt

> after appt instead of having an enjoyable summer. Then I read

your

> post. I felt that slap loud and clear. I can't believe it. We

are in

> a small town too and I haven't yet felt any real discrimination

against

> Aubrie. It's hard to believe that people can be that way. I am

trying

> to put myself in their shoes to even imagine that they are

> well-intentioned. I don't know what to say. I'm as new to this

as you

> are. On the one hand, you don't want Mac to spend time with

anyone who

> is less than accepting of her, but on the other hand, she has

every

> right to participate in those programs! Do you have an equivalent

to

> our ADA (Americans with Disabilities Act)?

>

> I am paid handsomely by the state to teach disability awareness to

child

> care providers. It makes me sick that they'd pay me so much to

teach

> people something that should be a given. I guess now I see why it

may

> be necessary.

>

> Michele W

> Aubrie's mom 7 yrs

>

> >

[Guest guest]

ur great to bonnnie xxxx ellen

>

> Ellen,

>

> How right you are. You're great!

>

> Bonnie

>

>

>

[Guest guest]

is,

A letter to the music teacher is a good idea and goes against my initial

feelings of screaming and swearing at her. Thanks.

Jeanie

[Guest guest]

Kim,

It sometimes feels like we have to fight for absolutely everything to allow

our kids their rights and potential (medically, educationally and socially).

I guess it's a good thing I don't mind a good " debate " .

Jeanie

[Guest guest]

Martha,

That's why this list is our saving grace, THANKS CASEY, IF YOU'RE OUT THERE.

In my little town I am very much alone, MacKenzie is the only child with

such a range of issues. I guess I need to do more PR work. Thanks for

sharing youe experiences.

Jeanie

[Guest guest]

Michele,

I'm a bit unfamiliar with our laws but it looks like I'm going to have to do

some digging. I was so shocked that I really let this all slide in my

surprise, although it's like you said, I don't want her to spend time with

anyone that doesn't want her. It's funny because for the most part the

community has been great accomadating her and helping us as a family. Maybe

you should take a Nova Scotian vacation and give these people a little

disability awareness.

Jeanie

[Guest guest]

Marilyn,

WOW! If a child in grade 3 has the nerve to educate people about her

problems then maybe I'll have to get a little firmer. Thanks, this was

actually inspirational.

Jeanie

[Guest guest]

Bonnie,

Great advice, you're right, we do know who we can count on. Thanks.

Jeanie

[Guest guest]

Jeanie,

Let's say I have gotten much better at the diplomatic debate than my passive

wallflower adolescent self ever would have dreamed possible. Occasionally I

miss those sweet and innocent days, before I learned some of life's harder

lessons, but have no doubt I am a much stronger person from it. Picture

willow tree that looks like it will blow over in the wind, but is flexible

and goes with the wind rather than the massive oak that is rigid and can be

blown over.

Kim

> Kim,

> It sometimes feels like we have to fight for absolutely everything to allow

> our kids their rights and potential (medically, educationally and socially).

> I guess it's a good thing I don't mind a good " debate " .

>

> Jeanie

>

>

>

> 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@....

> 7th International

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

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

[Guest guest]

Glenn wanted to take piano lessons about seven years ago. The first place we

tried I explained the situation prior to setting up the lessons. We got the

same response. The second try, we did not explain Glenn's challenges but just

set up lessons like anyone else would. Once the person met Glenn, he also

changed his mind and made the same comments you experienced. We did not give

up. We found a wonderful person in another city to work with Glenn. I

interpretted for him and Glenn took piano lessons for two years. There are many

ignorant people out there, but please, don't give up! There are just as many

opened minded people as well, you just have to find them.

Jeanie wrote:Today I feel like I've been slapped in the

face from my community. The local horseback riding club has been denied

insurance to have MacKenzie participate in their program. Although I was hoping

she would theraputically benefit from the riding, I mostly wanted it for her

enjoyment and would have signed any waiver, etc. Two hours later, the lady that

we signed up with to take piano lessons, called and politely changed her mind

about taking on MacKenzie, she doesn't feel comfortable with her and fears that

we would be wasting our time.

I guess this is something that I wasn't expecting. Living in a little town has

advantages but many limits as well. This is kind of scary for me and I'm afraid

it may be the sign of things to come. Any thoughts?

Jeanie Colp

mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 10

[Guest guest]

Kim-

Can I use your tree analogy in my presentations??

Michele W

Kim Lauger wrote:

> Jeanie,

>

> Let's say I have gotten much better at the diplomatic debate than my

> passive

> wallflower adolescent self ever would have dreamed possible.

> Occasionally I

> miss those sweet and innocent days, before I learned some of life's harder

> lessons, but have no doubt I am a much stronger person from it. Picture

> willow tree that looks like it will blow over in the wind, but is flexible

> and goes with the wind rather than the massive oak that is rigid and

> can be

> blown over.

>

> Kim

>

>

>

>

> > Kim,

> > It sometimes feels like we have to fight for absolutely everything

> to allow

> > our kids their rights and potential (medically, educationally and

> socially).

> > I guess it's a good thing I don't mind a good " debate " .

> >

> > Jeanie

> >

> >

> >

> > 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@....

> > 7th International

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

> > Information will be available at www.chargesyndrome.org or by calling

> > 1-.

> >

[Guest guest]

Marilyn,

WOW!! I, as well as many others I am sure, will be looking forward to you

telling us how this works itself out.

good luck.

pam

[Guest guest]

Michele,

Of course you can use it.

Kim

> Kim-

> Can I use your tree analogy in my presentations??

>

> Michele W

>

> Kim Lauger wrote:

>

>> Jeanie,

>>

>> Let's say I have gotten much better at the diplomatic debate than my

>> passive

>> wallflower adolescent self ever would have dreamed possible.

>> Occasionally I

>> miss those sweet and innocent days, before I learned some of life's harder

>> lessons, but have no doubt I am a much stronger person from it. Picture

>> willow tree that looks like it will blow over in the wind, but is flexible

>> and goes with the wind rather than the massive oak that is rigid and

>> can be

>> blown over.

>>

>> Kim

>>

>>

>>

>>

>>> Kim,

>>> It sometimes feels like we have to fight for absolutely everything

>> to allow

>>> our kids their rights and potential (medically, educationally and

>> socially).

>>> I guess it's a good thing I don't mind a good " debate " .

>>>

>>> Jeanie

>>>

>>>

>>>

>>> 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@....

>>> 7th International

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

>>> Information will be available at www.chargesyndrome.org or by calling

>>> 1-.

>>>

[Guest guest]

Me too?

Sharon from W Oz

>Kim-

>Can I use your tree analogy in my presentations??

>

>Michele W

>

>Kim Lauger wrote:

>

>> Jeanie,

>>

>> Let's say I have gotten much better at the diplomatic debate than my

>> passive

>> wallflower adolescent self ever would have dreamed possible.

>> Occasionally I

>> miss those sweet and innocent days, before I learned some of life's harder

>> lessons, but have no doubt I am a much stronger person from it. Picture

>> willow tree that looks like it will blow over in the wind, but is flexible

>> and goes with the wind rather than the massive oak that is rigid and

>> can be

>> blown over.

>>

>> Kim

>>

>>

>>

>>

>> > Kim,

>> > It sometimes feels like we have to fight for absolutely everything

>> to allow

>> > our kids their rights and potential (medically, educationally and

>> socially).

>> > I guess it's a good thing I don't mind a good " debate " .

>> >

>> > Jeanie

>> >

>> >

>> >

>> > 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@....

>> > 7th International

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

>> > Information will be available at www.chargesyndrome.org or by calling

>> > 1-.

>> >

[Guest guest]

---

You fine folks are going to beat me up when you see me in Miami, but

here goes. Maybe the lady had a previous experience and knows that

she doesnt have the patience or was accused by another parent

of " taking their money " . It sounds like she was honest. You dont

even get that all of the time with the docs. I would rather have

someone who was/is comfortable with my son than someone who wasnt!

Positive results come from positive relationships. The horse back

riding could just be that it is a major part of their income and

they just could not take the risk. We were looking for regular ole

health insurance for our family in case I get layed off and NO ONE

will insure my son. So I kinda understand the liability issues

around the horse back riding. Yes it is a bit of mis communication

on the their part. Your gain in more ways than one. Your a parent

of child with CHARGE and if you have as much resilience as your

child you will work around this issue. You probably already have.

In my opinion for ever person who is afraid to work with our kids

there are 10 who would love to! Yes, when a school system or the

likes boycotts our kids needs, that is wrong. But when an

individual who is ignorant to the real deal says " NO " educate them

and move on. Send them CHARGE brochures or something. I hope by

showing the other half of the glass you folks arent to upset with

me. Maybe silence would be golden in this case on my part, but

htose folks are not the corporate America that is constantly trying

to himhaw their way out of helping us help our kids. They are just

trying to make a living like us to provide for their families as well

Randy, Garlands Poppy

In CHARGE , ellen howe <ellen.howe@g...> wrote:

> ur great to bonnnie xxxx ellen

>

>

> >

> > Ellen,

> >

> > How right you are. You're great!

> >

> > Bonnie

> >

> >

> >

[Guest guest]

Of course you can, it just popped out that day, makes me wonder if I heard

it somewhere else years ago. Not that I can recall, but one never knows.

Kim

On 6/22/05 7:06 PM, " Sharon Barrey Grassick "

wrote:

> Me too?

> Sharon from W Oz

>

>> Kim-

>> Can I use your tree analogy in my presentations??

>>

>> Michele W

>>

>> Kim Lauger wrote:

>>

>>> Jeanie,

>>>

>>> Let's say I have gotten much better at the diplomatic debate than my

>>> passive

>>> wallflower adolescent self ever would have dreamed possible.

>>> Occasionally I

>>> miss those sweet and innocent days, before I learned some of life's harder

>>> lessons, but have no doubt I am a much stronger person from it. Picture

>>> willow tree that looks like it will blow over in the wind, but is flexible

>>> and goes with the wind rather than the massive oak that is rigid and

>>> can be

>>> blown over.

>>>

>>> Kim

>>>

>>>

>>>

>>>

>>>> Kim,

>>>> It sometimes feels like we have to fight for absolutely everything

>>> to allow

>>>> our kids their rights and potential (medically, educationally and

>>> socially).

>>>> I guess it's a good thing I don't mind a good " debate " .

>>>>

>>>> Jeanie

>>>>

>>>>

>>>>

>>>> 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@....

>>>> 7th International

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

>>>> Information will be available at www.chargesyndrome.org or by calling

>>>> 1-.

>>>>