RE: talking about CHARGE

November 13, 2004

Jeanie,

You could certainly try to broach the subject with her. When I explained to a

group of kindergarten kids in the class I worked with about the little boy who I

work with, I simply told them that when some kids are born, they aren't as

healthy as other kids and they need things to help them like glasses, hearing

aids, etc. Would she understand the concept of healthy though I guess is the

question...it's worth a try to start introducing the topic, you could use

pictures of babies, some with no medical stuff around them and some with medical

equipment around them to introduce healthy and not healthy when born. Let me

know how it goes; maybe I could get something ready and when I come down to

visit you at Christmas, we could do it with the girls together so Kennedy could

be another girl we could tell her who wasn't as healthy and needed help with

some things when she was born. We could then tell her about some babies that

didn't need help with some things and were healthier when they

were born. Let me know what you think...

Lis

Jeanie Colp wrote:

For several months I've been trying to come up with a way to make MacKenzie

be more accepting of the necessary modifications (especially in school)

needed to help her function. This is a major problem for her. She will not

accept any different paper work, devices or even presentation from what the

other kids get. Although I'm glad that her social awareness is so high, her

work is suffering and in turn she becomes frustrated with that as well.

I'm wondering if it's not time to TRY to explain CHARGE to her. She

certainly knows that there are things that are different about her, but I

think she sees this as a bad thing. This is going to be something that

she'll have to cope with forever and I'm wondering how to help her embrace

her differences and help her to help herself.

I know that CHARGE itself may be over her head, but when did your kids

realize that they have CHARGE. Is age 6 to early to tackle this? Keep in

mind, MacKenzie's favorite TV show is Trauma, Life in the ER. So she's very

interested in people that have similar life experiences.

Jeanie Colp

mom to MacKenzie 6 CHARGE

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November 13, 2004

Jeanie-

I don't think it's necessarily too early, although each child is different.

Aubrie understands that she has CHARGE, that her ears and eyes don't work

well without help, that her hips weren't working so the dr fixed them, etc.

She's got a very accepting personality so she doesn't have a problem with

having her aid, preferential seating, etc. She told me the other day, " Now

I walk like everyone else " -- and she does -- her gait is much more " normal "

after her hip surgery. I asked who told her that and she didn't know so I

don't know if someone said something or if she came up with it on her own.

She's seen her baby pictures and I've told her about how sick she was and

nurses helped me take care of her. We still see most of her nurses and

therapists from infancy -- either they are still on her team at school or we

see them in the community. So she is fully aware of all the people in her

life from early on and why they were there. Plus she's been to CHARGE

conferences from the beginning. She's met Patty too.

For us, it's been a part of our conversations from the beginning. She

hasn't yet expressed dismay at being different, wishing she didn't have

CHARGE, etc.

So-- I don't think it's too early. But how to help MacKenzie accept and

understand her differences... that I'm not sure. It's surely helpful to

have Kennedy as a friend so that she isn't the only one in her world like

her. I'm sure there are many others on the list who will be waiting to hear

what you find that works so that they can be prepared with their child as

the time comes. Good luck-

Michele W

Aubrie's mom 6 yrs

November 13, 2004

My nephew has CP, which impacts the right side of his body. The muscles on

that side are very tight making use of his hand etc. difficult.

In 5th grade he was on a basketball team. During one of the breaks he sat

on the bench to tie his shoes. One of the other boys leaned over and tied

Dylan's shoes for him, then the two got up and went back out on the court.

There was no awkwardness, no being embarrassed, no teasing. It was so

natural between the two of them, but we couldn't help but cry.

I heard another kid ask this same nephew why his hand didn't work and he

just shrugged and said, " That's just how I was born. " I know that his

self-accepting matter of fact attitude is what lead to the basketball

experience being no big deal.

Later he rode bulls in high school rodeo. He was never a child who was

victimized or picked on by other kids.

I don't know how he came to that matter of fact attitude. I don't think it

was taught to him. It just was.

On a side note, Doe(Intervener)was concerned about a social situation at

school for Dylan where she felt the other boys were " ditching " Dylan. I

told her he could still participate and that I would celebrate the day when

he knew he was being ditched.

Kim

Re: talking about CHARGE

Jeanie,

You could certainly try to broach the subject with her. When I explained to

a group of kindergarten kids in the class I worked with about the little boy

who I work with, I simply told them that when some kids are born, they

aren't as healthy as other kids and they need things to help them like

glasses, hearing aids, etc. Would she understand the concept of healthy

though I guess is the question...it's worth a try to start introducing the

topic, you could use pictures of babies, some with no medical stuff around

them and some with medical equipment around them to introduce healthy and

not healthy when born. Let me know how it goes; maybe I could get something

ready and when I come down to visit you at Christmas, we could do it with

the girls together so Kennedy could be another girl we could tell her who

wasn't as healthy and needed help with some things when she was born. We

could then tell her about some babies that didn't need help with some things

and were healthier when they