Re: Make-a-Wish/

[Guest guest]

In a message dated 7/3/2007 1:20:06 P.M. Pacific Daylight Time,

mongomustgolf@... writes:

>

> I wonder if people like that are embarrassed to have

> a disabled kid, ignorant or just plain

> lazy?

>

Unfortunately, some cultures view a disabled person as bringing shame to the

family. To prevent some of the shame, they hide them away from society.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Satori is adorable! My daughter, h, is 11 and also has type 2. She's a

spunky little thing, too.

Are y'all in Dayton Ohio? My friend Suzanne (mom to ne, 10 w/ type 2) are

planning on meeting in the Dayton area sometime this month to let the kiddos get

together. M. from this list is also going to come hang out with us if

she can.

Would you be interested in getting Satori together with h and ne?

Love and Hugs

Jeni

[Guest guest]

I would love to, but we are in Dayton NV. I wish we were closer to other kids

with SMA.

[Guest guest]

Boo!!!!! I was hoping for Ohio! Are there no other kids around your area? There

aren't many around here and the ones that are follow an incredibly different

treatment plan. It's hard for me to spend much time with them and see the kiddos

in the shape they are in. Wow that sounds harsh. I'm not that judgemental

really! It's just that there is one *almost* 12 year old who weighs 32lbs - her

Mom has been told repeatedly by the docs that she needs a feeding tube. At one

point they wouldn't let Mom check her out of the hospital until she had gained

2lbs. Mom won't have the tube placed because if she gains any weight she'll be

too hard to lift. There is also a 17 year old who is forced to live basically

confined to her bed or a recliner. Her parents won't " allow " her to use her

powerchair because they don't trust her in it. She's only allowed to go to

school for 1/2 day a week. She is totally isolated and dependent on her parents.

These are just two examples. These girls'

parents think I'm insane because I'd rather h be a good weight than easy

for me to pick up and because h is allowed (encouraged!) to be social and

live in the real world!

Ok... rambling again! Sorry ;0)

Love and Hugs

Jeni

Re: Make-a-Wish/

I would love to, but we are in Dayton NV. I wish we were closer to

other kids with SMA.

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[Guest guest]

That is horrifying! I had a teacher of Tori's just about call cps one day

because I told her that

I would rather Tori break her leg (which she has done twice) than live in a

bubble. The school

didn't want her driving " too fast " on the playground because they were sure she

would tip

over.

She weighs 65lbs and is very hard to lift. So what! She is healthy, happy and

strong (for

SMA) and when she gets sick, which isn't often, if she drops a little it isn't

dangerous.

She is a full time straight A student with lots of friends and is very social.

She even has a

Trax, and goes boonie-crashing around Lake Tahoe and on local fire roads with

her dad

when he mountain bikes. I can't imagine keeping her home all the time. She

would go nuts

(as would I!)

I wonder if people like that are embarrassed to have a disabled kid, ignorant or

just plain

lazy?

[Guest guest]

I agree with some of what you posted but some parents choose to keep their kids

home instead of sending them to school because their school is just plain

ignorant and the child is in harms way so to speak by going to school. A child

can have a very active and social life without going to a public or private

school. We do not have issues with our school but have heard many horror stories

where it is not in the childs' best interest to remain in the school.

Brett does go to school 1/2 the year, we choose to keep him home during cold/

flu season because he cannot handle the exposure to the viruses although we are

slowly closing that gap he is at home instead of at school. Brett leads a very

active and social life with or without school and we are always busy doing

things.

Just thought I would add that thinga aren't always so black/ white with school

that more things come into the equation.

BTW Tori sounds like she has a blast!

Kristal

Mom to Brett- SMA II- 7 years old!

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett

Buy Brett Gear at: http://www.cafepress.com/b4sma/2834914

Learn more about SMA:

www.smasupport.com

www.fsma.org

Re: Make-a-Wish/

That is horrifying! I had a teacher of Tori's just about call cps one day

because I told her that

I would rather Tori break her leg (which she has done twice) than live in a

bubble. The school

didn't want her driving " too fast " on the playground because they were sure

she would tip

over.

She weighs 65lbs and is very hard to lift. So what! She is healthy, happy and

strong (for

SMA) and when she gets sick, which isn't often, if she drops a little it isn't

dangerous.

She is a full time straight A student with lots of friends and is very social.

She even has a

Trax, and goes boonie-crashing around Lake Tahoe and on local fire roads with

her dad

when he mountain bikes. I can't imagine keeping her home all the time. She

would go nuts

(as would I!)

I wonder if people like that are embarrassed to have a disabled kid, ignorant

or just plain

lazy?

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

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Checked by AVG Free Edition.

Version: 7.5.476 / Virus Database: 269.9.14/885 - Release Date: 7/3/2007 10:02

AM

[Guest guest]

I'd guess all 3.

You sound like a great fighter for your daughter's

independence! Keep fighting the fight!

Mitch

--- tombaak <lfour@...> wrote:

>

> I wonder if people like that are embarrassed to have

> a disabled kid, ignorant or just plain

> lazy?

>

>

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Travel.

http://travel./

[Guest guest]

Tori sound just like me i was a wild child people think u can be caged if u are

in a wheelchair but it makes us so much more free we are givin electric

wheelchairs to be like " normal " kids and school constly put up barier just do as

i did and drive throught them lol and if u must run over the teachers toes if

need be lol x

laura

tombaak <lfour@...> wrote:

That is horrifying! I had a teacher of Tori's just about call cps one

day because I told her that

I would rather Tori break her leg (which she has done twice) than live in a

bubble. The school

didn't want her driving " too fast " on the playground because they were sure she

would tip

over.

She weighs 65lbs and is very hard to lift. So what! She is healthy, happy and

strong (for

SMA) and when she gets sick, which isn't often, if she drops a little it isn't

dangerous.

She is a full time straight A student with lots of friends and is very social.

She even has a

Trax, and goes boonie-crashing around Lake Tahoe and on local fire roads with

her dad

when he mountain bikes. I can't imagine keeping her home all the time. She would

go nuts

(as would I!)

I wonder if people like that are embarrassed to have a disabled kid, ignorant or

just plain

lazy?

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

Answers - Get better answers from someone who knows. Tryit now.

[Guest guest]

i dont think that people can use SMA to keep kids from goin to school i just did

it there for my full education and when i was ill or had hospital i would stay

off no problim however to home school or keep of to profent illness is not

something i would agree with i have never been one for proventing anything live

for today and if today i wasnt well i would stay of but if i was ok there is no

way i would stay off for a long time to provent illness i would be angery if i

looked back now and there were long periods of time i missed school live hard

enought with sma never mind alowing your education to slip in proventing a cold

or flu you might not catch

laura sma II

Kristal Koehler <kkoehler47@...> wrote:

I agree with some of what you posted but some parents choose to keep

their kids home instead of sending them to school because their school is just

plain ignorant and the child is in harms way so to speak by going to school. A

child can have a very active and social life without going to a public or

private school. We do not have issues with our school but have heard many horror

stories where it is not in the childs' best interest to remain in the school.

Brett does go to school 1/2 the year, we choose to keep him home during cold/

flu season because he cannot handle the exposure to the viruses although we are

slowly closing that gap he is at home instead of at school. Brett leads a very

active and social life with or without school and we are always busy doing

things.

Just thought I would add that thinga aren't always so black/ white with school

that more things come into the equation.

BTW Tori sounds like she has a blast!

Kristal

Mom to Brett- SMA II- 7 years old!

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett

Buy Brett Gear at: http://www.cafepress.com/b4sma/2834914

Learn more about SMA:

www.smasupport.com

www.fsma.org

Re: Make-a-Wish/

That is horrifying! I had a teacher of Tori's just about call cps one day

because I told her that

I would rather Tori break her leg (which she has done twice) than live in a

bubble. The school

didn't want her driving " too fast " on the playground because they were sure she

would tip

over.

She weighs 65lbs and is very hard to lift. So what! She is healthy, happy and

strong (for

SMA) and when she gets sick, which isn't often, if she drops a little it isn't

dangerous.

She is a full time straight A student with lots of friends and is very social.

She even has a

Trax, and goes boonie-crashing around Lake Tahoe and on local fire roads with

her dad

when he mountain bikes. I can't imagine keeping her home all the time. She would

go nuts

(as would I!)

I wonder if people like that are embarrassed to have a disabled kid, ignorant or

just plain

lazy?

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

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.476 / Virus Database: 269.9.14/885 - Release Date: 7/3/2007 10:02

AM