Re: MDA camp

[Guest guest]

In a message dated 1/14/2001 4:24:59 PM Pacific Standard Time,

liliwigg@... writes:

<< http://www.mdausa.org >>

Thanks G . I will call .. I hope camp dosen't scare Adam.. Seeing kids that

are worse off etc... Any advice?

[Guest guest]

In a message dated 1/14/01 5:12:02 PM Pacific Standard Time, jacee17@...

writes:

<< I hope camp dosen't scare Adam.. Seeing kids that

are worse off etc... Any advice?

>>

,

Our experience with MDA camp came with mixed feeling from . She and I

went up for the day to see if she liked it. We are cautious parents and

thought if she liked it for the day, we would sign her up the following year.

Everyone was very nice, friendly and helpful. But it scared to death.

She saw kids on ventilators, the whole range of MD disorders are well

represented. The philosophy is marvelous; give caretakers a respite. It just

was not for her; she wants to be as normal as she can be and I think the

reality slapped her in the face. Every year she is invited back and ever year

she declines. I wish you and Adam the best as you investigate this.

a

[Guest guest]

,

In my area you sign up through your area MDA.

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

From: jacee17@...

egroups

Sent: Sunday, January 14, 2001 05:05 PM

Subject: [] MDA Camp

I am thinking about sending Adam to the MDA camp. Anyone have any idea

where/how we sign up?

eGroups Sponsor

[Guest guest]

> I am thinking about sending Adam to the MDA camp. Anyone have any

idea

> where/how we sign up?

>

,

Contact your local MDA chapter. They will be able to give the you

date for the MDA camp in your region and also the application form

when it is available.

My Katey has been to MDA camp three years - this summer will be her

4th. She is 10 and has absolutely loved it. The camper-to-counselor

ratio at our camp is generally 1:1. In other words each camper

usually has their own counselor. The first year Katey attended she

had 2 COUNSELORS all to herself!!!! Last year they were short on

counselors so they paired Katey with another camper since Katey is

fully ambulatory and does not require much assistance.

It has been a tremendous experience for her. I highly recommend

trying it for any of your children that have been diagnosed,

especially since there is no cost to the families. I would imagine

the MDA camps vary from region to region just as the MDA clinic

experiences have varied amongst the group. But I can report

that we have been extremely pleased with the MDA camp experience here

in Eastern North Carolina.

Be sure to sign up as soon as they have applications available since

space can be limited based on volunteers available and funds

available in your region.

Ruth Warren

[Guest guest]

In a message dated 1/14/2001 5:38:59 PM Pacific Standard Time,

mikerobertac@... writes:

<< Every year she is invited back and ever year

she declines. I wish you and Adam the best as you investigate this.

a >>

a you answered my question.. Adam would feel the sameway.

jenny

[Guest guest]

> In a message dated 1/14/2001 4:24:59 PM Pacific Standard Time,

> liliwigg@s... writes:

>

> << http://www.mdausa.org >>

> Thanks G . I will call .. I hope camp dosen't scare Adam.. Seeing

kids that

> are worse off etc... Any advice?

>

,

One other thing about MDA camp - you do have to be a registered MDA

patient to qualify. I can't remember from previous discussions about

MDA in the past if you and your kids go to an MDA clinic already or

not.

My experience with my daughter is that she has not been scared seeing

kids with very wide degress of disability. If anything, it has given

her a better perspective on life in general and compassion for all

humans. She has mentioned to me more than once that she wants to be

a counselor when she is old enough to qualify. She loves hitching

rides from her camp friends on scooters and electric wheelchairs and

was laughing just the other day when we had a conversation about how

she took a " test drive " in a scooter at camp and kept bumping into

things! I suspect she tried on other kid's braces and tried out

walkers and other aids that she doesn't use, because she does that at

home with my AFOs. I think being around the other kids takes away the

fear of the unknown (in my opinion.) The kids at camp are just kids -

they want to laugh, play and have fun just like everyone else. An

interesting fact at our MDA camp - the boy campers outnumber the girl

campers at least 2-1. I'm not sure why.

Feel free to ask me any questions about our experience with camp.

Ruth Warren

[Guest guest]

a, just read your post. Your approach was a good one. I'm

curious how old was when she went to visit that time. I think

age plays a factor. The pre-teen and teen years are especially

challenging. Katey was 7 the first year she went to camp. She's

always loved it, but I am prepared if she decides one year it's not

for her. She will becoming a preteen very soon and I have always

wondered if her persective would change when she entered middle

school. Only time will tell... I will say that her contact with

other kids, regardless of their ability/diasability, has been

nothing but positive for her. But if she decides one year she

doesn't want to go, then she won't go. At the moment, she wants to

be a counselor some day.

Ruth Warren

........Original message................

> ,

>

> Our experience with MDA camp came with mixed feeling from .

She and I

> went up for the day to see if she liked it. We are cautious parents

and

> thought if she liked it for the day, we would sign her up the

following year.

> Everyone was very nice, friendly and helpful. But it scared

to death.

> She saw kids on ventilators, the whole range of MD disorders are

well

> represented. The philosophy is marvelous; give caretakers a

respite. It just

> was not for her; she wants to be as normal as she can be and I

think the

> reality slapped her in the face. Every year she is invited back and

ever year

> she declines. I wish you and Adam the best as you investigate this.

>

> a

[Guest guest]

Hi Ruth,

You said--< She has mentioned to me more than once that she wants to be

a counselor when she is old enough to qualify. >

--------------------

One year they didn't have enough counselors, or one on one help,and I

volunteered. They wouldn't accept me--since I have CMT, and was not

covered by their insurance. Afraid Iwould fall, or hurt myself, trying

to help someone.

, what age is Adam? The reason I ask, I feel that sometimes the

younger ones are more afraid of what they see, than the older (10 up) who

understand a bit. Even showing Adam pictures in Quest magazine, might

help prepare him. As Ruth said, they are all there to have fun.

The first year my daughter went, she was 11-12. She fought me all the

way there--didn't want to go. I promised her, if she didn't like it, I'd

never ask her to go again.

When she came home, she just stood and looked at me. I thought " Uh-oh,

she hated it " . Then she said " Mom, I had so much fun, I don't know where

to start " !! She went every year after that, until she was too old for

camp.

Theresa

..

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[Guest guest]

In a message dated 1/15/2001 11:10:54 AM Pacific Standard Time,

benember@... writes:

<< , what age is Adam? The reason I ask, I feel that sometimes the

younger ones are more afraid of what they see, than the older (10 up) who

understand a bit. Even showing Adam pictures in Quest magazine, might

help prepare him. As Ruth said, they are all there to have fun.

>>

Adam is almost 9. He is counting down the days. I am really torn abt this. I

don't want him to go and make other kids uncomfortable if he is afraid of

them. On the other hand he may love it and after he got used to the kids he

may learn many things. If he saw someone in a ventilator I don't know what he

would do. When I was in Jr. High School I had a special PE class. We had some

messed up kids in there. I was the least effected. I went 2 times. After that

I felt so guilty that I was not as bad off as they were. I couldn't go

anymore. The P E teacher read my thoughts. This is the same PE teacher

Spencer has this year. He is very insightful.

[Guest guest]

In a message dated 1/15/2001 6:42:12 PM Pacific Standard Time,

mikerobertac@... writes:

<< a here,

Boy, do I feel guilty and feel like I opened a can of worms. I will try to

respond to Ruth, , and Libby in one fell swoop. >>

a, I asked for opinions. I needed to hear every side of this camp. I

think Adam is like your daughter.

Thank you don't feel bad. I needed to hear it all.

jenny

[Guest guest]

a,

Why do you feel guilty? No need to. You were simply relating your

experience with and camp.

My feeling is, not every experience is the right solution for

everyone. There is no " one size fits all " answer. 's

experience at camp is just as valid as anyone's. It's important to

see all sides of the issues that come up on this forum. Your honesty

on any issue helps others consider all possible angles. There is no

unilateral right or wrong approach to living with CMT. There are

options we can explore, and then accept or reject based on what works

for us as individuals.

sounds like such a cool kid. And she has a great mom!

Ruth Warren

> a here,

>

> Boy, do I feel guilty and feel like I opened a can of worms. I will

try to

> respond to Ruth, , and Libby in one fell swoop.

>

> was 9-10 the first year. I am going to be brutally honest

here. She

> was/is tall, is 14 and 5'9 " people mistake her for 19. When we got

there, a

> 19 yo male followed her around trying to get to know her better. He

was

> persistent. I would not let her out of my sight. I finally let it

be known

> how old she was and he went away. Everyone was nice, and seemed

wonderful.

> The kids were happy. They tried to include her in every activity.

In this

> particular camp, they break down the activities into the below

teens and the

> above teens which includes people up to age 21. Well, some of the

people are

> very " friendly " out in the open, mostly the older kids but she was

seeing it

> " all " . They told me there were not enough kids to break them down

into more

> age appropriate activities so the younger kids did get involved in

some of

> the older kids games. For example, she was put in an slightly

older group

> where most of the people were in wheelchairs. They played a hockey

type game

> with the counselors pushing the kids. She HAD to go into a

wheelchair if she

> wanted to play and she declined. She declined everything. Maybe the

group in

> our part of the country is not big enough, I don't know. It was in

a

> beautiful setting in the Cascade mountain range. The kids there

that were

> participating were very disabled, on ventilators, etc. They had to

be hoyer

> lifted into the pool. She was scared to death. Some of the kids

were

> ambulatory like her but she could not get past those images.

> I asked the director about the necking/making out couples that we

stumbled

> upon and she said it was a little problem because they have older

people too,

> not that is a problem but is not the visual stimuli I had in mind

for my

> daughter.

> Now having said that, is strong willed and won't consider

going back

> though I ask every year when the invitation arrives. I think it

would be good

> for the kids with the right mindset; seems to have those

images burned

> in her mind and doesn't want to be reminded of them. I think she

even

> destroyed the pictures of camp that I had taken.

> asked for opinions and I just wanted to be honest. I hear

very good

> reports every year on the Telethon so it is serving many people.

Lesle just

> won't allow herself to be served.

>

> a