Thanks to Everyone

[Guest guest]

Dawn,

I hope you win BIG. I think it is so terrible that we have to get

attorneys to support our love and advocacy for our Asperger/ASD loved

ones. It makes me so mad.......uuurrgggh.

Keep doing what you are doing.........your son has the best going for

him. A mom who understands him, supports him, knows how to advocate

and won't accept anything less than the best for him.

You are doing the right thing. Asperger is the autism

spectrum......it is a medical condition. You have every right to

voice your love, concern and advocacy on his behalf.

Just so you know, I too have an attorney and my has to do with

a " jerk " supervisor who abused me and my requests to help my son.

Sometimes, I wonder why people are so insensitive and callous to

Asperger and the Autism Spectrum.

I guess I will never understand people who do so little (nothing

sometimes) for our ASD loved ones. Best Regards.....

Mark

>

> Hi Everyone!!

>

> I just feel the need to say thanks to everyone in this group

> for " validating " everything my family and I have been experiencing

> for 14 1/2 years. My son was diagnosed with Autism at age 3 and

> Asperger's at age 8.

>

> I moved from Baltimore, MD, a little over a year ago where he was

> getting wonderful services, to a rural area in Delaware. Big

> mistake. Trying to convince the people around here that my son's

> issues are not the result of his upbringing (yes, there are people

> out there who still think that way) and are real and valid is a

> chore. They have a great school here called the Sussex Consortium

> that is a wonderful place for Aperger kids, but getting your school

> district to agree to send them there is a whole other issue. We

have

> an IEP meeting on the 31st to give that final fight to get him into

> the consortium. This one is involving lawyers.

>

> It just makes me breathe a sigh of relief when I read your posts.

It

> allows me to say to myself and my family " see, there are others

just

> like us . . . we're not the only ones " .

>

> God bless everyone. Keep posting!

>

> Dawn

>

[Guest guest]

Nicki, Just a thought, but have you thought about contacting Disneyworld and asking if they have something that you could rent that is big enough? I live closer to Disneyland, and remember seeing something like that there, although, it was a long time ago. Another idea is to check into the Disneyworld office when you arrive to get a pass so that your family does not have to wait in lines. They give this free to those who cannot stand for long periods of time, or who tire easily or cannot do stairs. ' & a 12 jia/uveitisnicolestiltner <nicolestiltner@...> wrote: i just wanted to tell everyone thank you for all of the support that you have given my family since i joined just a few short days ago. right now i think this group is what is keeping me sane through all this madness.i just hope that all these doc app. get the girls under control before july. we have a family vacation to disney world scheduled for the middle of july. i hate to think that their first trip to disney would be tainted by this stupid disease. we have already purchased one of those three wheeled strollers but unfortunately even though it is the biggest one we could find my oldest daughter can not fit in it. does anyone know where i can find a stroller that will fit a child who is 4 ft tall and about 50 lbs. and that doesn't cost a small fortune. i would like to take a stroller for each of my

girls so that even if they are flared they will be able to go and have fun.thanks again for the supportnicki

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Nicki - Have you checked with insurance? Look at your local medical supply store (the one's that carry wheelchairs) and see if you can get an adult size stroller. Maclaren makes one for the older kids and it folds up like an umbrella stroller... Insurance should pay for it, but it takes some work..

Good luck!

Alia and Caroline, age 6, poly and uveitis

thanks to everyone

i just wanted to tell everyone thank you for all of the support that

you have given my family since i joined just a few short days ago.

right now i think this group is what is keeping me sane through all

this madness.

i just hope that all these doc app. get the girls under control before

july. we have a family vacation to disney world scheduled for the

middle of july. i hate to think that their first trip to disney would

be tainted by this stupid disease. we have already purchased one of

those three wheeled strollers but unfortunately even though it is the

biggest one we could find my oldest daughter can not fit in it. does

anyone know where i can find a stroller that will fit a child who is 4

ft tall and about 50 lbs. and that doesn't cost a small fortune. i

would like to take a stroller for each of my girls so that even if they

are flared they will be able to go and have fun.

thanks again for the support

nicki

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

You actually may be able to have Disney help you with this. Believe

it or not, they have a fabulous customer service record and

especially with special needs. Their strollers are very solid and

may work or they may have something else available for rental. I know

how hard it is to travel and think of all the necessary arrangements

on big vacations like this --- I have found that Disney goes out of

their way to help so give them a call first.

-Hadley (Isabelle, 4 yrs. Pauci, , 19 mos., n, 15 yrs.

and Katharine 13 yrs.)

>

> i just wanted to tell everyone thank you for all of the support

that

> you have given my family since i joined just a few short days ago.

> right now i think this group is what is keeping me sane through all

> this madness.

> i just hope that all these doc app. get the girls under control

before

> july. we have a family vacation to disney world scheduled for the

> middle of july. i hate to think that their first trip to disney

would

> be tainted by this stupid disease. we have already purchased one of

> those three wheeled strollers but unfortunately even though it is

the

> biggest one we could find my oldest daughter can not fit in it.

does

> anyone know where i can find a stroller that will fit a child who

is 4

> ft tall and about 50 lbs. and that doesn't cost a small fortune. i

> would like to take a stroller for each of my girls so that even if

they

> are flared they will be able to go and have fun.

>

> thanks again for the support

> nicki

>

[Guest guest]

oops, just realized that had the same idea! Silly me, a well,

good minds think alike right? lol!

> i just wanted to tell everyone thank you for all of the

support that

> you have given my family since i joined just a few short days ago.

> right now i think this group is what is keeping me sane through all

> this madness.

> i just hope that all these doc app. get the girls under control

before

> july. we have a family vacation to disney world scheduled for the

> middle of july. i hate to think that their first trip to disney

would

> be tainted by this stupid disease. we have already purchased one of

> those three wheeled strollers but unfortunately even though it is

the

> biggest one we could find my oldest daughter can not fit in it.

does

> anyone know where i can find a stroller that will fit a child who

is 4

> ft tall and about 50 lbs. and that doesn't cost a small fortune. i

> would like to take a stroller for each of my girls so that even if

they

> are flared they will be able to go and have fun.

>

> thanks again for the support

> nicki

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

[Guest guest]

thanks for all the ideas.

the only thing is that for emotional reasons we are trying not to

associate wheelchairs with this disease if at all possible and disney

doesn't have anything except wheelchairs. if that is what we have to

do but i wanted to exaust all of the other options first.

thanks,

nicki

> >

> > i just wanted to tell everyone thank you for all of the support

> that

> > you have given my family since i joined just a few short days

ago.

> > right now i think this group is what is keeping me sane through

all

> > this madness.

> > i just hope that all these doc app. get the girls under control

> before

> > july. we have a family vacation to disney world scheduled for the

> > middle of july. i hate to think that their first trip to disney

> would

> > be tainted by this stupid disease. we have already purchased one

of

> > those three wheeled strollers but unfortunately even though it is

> the

> > biggest one we could find my oldest daughter can not fit in it.

> does

> > anyone know where i can find a stroller that will fit a child who

> is 4

> > ft tall and about 50 lbs. and that doesn't cost a small fortune.

i

> > would like to take a stroller for each of my girls so that even

if

> they

> > are flared they will be able to go and have fun.

> >

> > thanks again for the support

> > nicki

> >

>

[Guest guest]

What's the difference between a big stroller for a big child versus a wheelchair? Sorry, I just HAD to ask because I think half of the reasoms people reject people with disabilities who are in wheelchairs is because we perpetuate so much stigma on it instead of making it a normal part of life that just happens sometimes.... and make it int oa bigger deal than it is....

Issadora

On Tue, May 6, 2008 at 12:52 PM, nicolestiltner <nicolestiltner@...> wrote:

thanks for all the ideas.the only thing is that for emotional reasons we are trying not to associate wheelchairs with this disease if at all possible and disney doesn't have anything except wheelchairs. if that is what we have to

do but i wanted to exaust all of the other options first.thanks, nicki> >> > i just wanted to tell everyone thank you for all of the support > that > > you have given my family since i joined just a few short days ago.

> > right now i think this group is what is keeping me sane through all > > this madness.> > i just hope that all these doc app. get the girls under control > before > > july. we have a family vacation to disney world scheduled for the

> > middle of july. i hate to think that their first trip to disney > would > > be tainted by this stupid disease. we have already purchased one of > > those three wheeled strollers but unfortunately even though it is

> the > > biggest one we could find my oldest daughter can not fit in it. > does > > anyone know where i can find a stroller that will fit a child who > is 4 > > ft tall and about 50 lbs. and that doesn't cost a small fortune.

i > > would like to take a stroller for each of my girls so that even if > they > > are flared they will be able to go and have fun.> > > > thanks again for the support

> > nicki> >> -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

[Guest guest]

i personally don't see the problem with a wheelchair but i live in a

very backwards area and the stigma of a wheelchair is very high.

> > > >

> > > > i just wanted to tell everyone thank you for all of the

support

> > > that

> > > > you have given my family since i joined just a few short days

> > ago.

> > > > right now i think this group is what is keeping me sane

through

> > all

> > > > this madness.

> > > > i just hope that all these doc app. get the girls under

control

> > > before

> > > > july. we have a family vacation to disney world scheduled for

the

> > > > middle of july. i hate to think that their first trip to

disney

> > > would

> > > > be tainted by this stupid disease. we have already purchased

one

> > of

> > > > those three wheeled strollers but unfortunately even though

it is

> > > the

> > > > biggest one we could find my oldest daughter can not fit in

it.

> > > does

> > > > anyone know where i can find a stroller that will fit a child

who

> > > is 4

> > > > ft tall and about 50 lbs. and that doesn't cost a small

fortune.

> > i

> > > > would like to take a stroller for each of my girls so that

even

> > if

> > > they

> > > > are flared they will be able to go and have fun.

> > > >

> > > > thanks again for the support

> > > > nicki

> > > >

> > >

> >

> >

> >

>

>

>

> --

> " Life- Like the flutter of wings... feel your hollow wings

rushing... " (AFI-

> Silver and Cold).

>

> my Flight in life is a metamorphosis of growth and this flutter of

wings is

> within me awaiting to find a space to find it's flow...

>

[Guest guest]

The stroller is basically a "larger size umbrella stroller" for those who know what they look like. It holds a much higher weight, it doesn't have all the bells and whistles a wheelchair can have and it is not electric so it is designed to be pushed. Check out the link http://www.1800wheelchair.com/asp/view-product.asp?product_id=2377 & s_cid=FROO_2377.....

Alia and Caroline, age 6, poly and uveitis

Re: Re: thanks to everyone

What's the difference between a big stroller for a big child versus a wheelchair?

Sorry, I just HAD to ask because I think half of the reasoms people reject people with disabilities who are in wheelchairs is because we perpetuate so much stigma on it instead of making it a normal part of life that just happens sometimes.... and make it int oa bigger deal than it is....

Issadora

On Tue, May 6, 2008 at 12:52 PM, nicolestiltner <nicolestiltner > wrote:

thanks for all the ideas.

the only thing is that for emotional reasons we are trying not to

associate wheelchairs with this disease if at all possible and disney

doesn't have anything except wheelchairs. if that is what we have to

do but i wanted to exaust all of the other options first.

thanks,

nicki

> >

> > i just wanted to tell everyone thank you for all of the support

> that

> > you have given my family since i joined just a few short days

ago.

> > right now i think this group is what is keeping me sane through

all

> > this madness.

> > i just hope that all these doc app. get the girls under control

> before

> > july. we have a family vacation to disney world scheduled for the

> > middle of july. i hate to think that their first trip to disney

> would

> > be tainted by this stupid disease. we have already purchased one

of

> > those three wheeled strollers but unfortunately even though it is

> the

> > biggest one we could find my oldest daughter can not fit in it.

> does

> > anyone know where i can find a stroller that will fit a child who

> is 4

> > ft tall and about 50 lbs. and that doesn't cost a small fortune.

i

> > would like to take a stroller for each of my girls so that even

if

> they

> > are flared they will be able to go and have fun.

> >

> > thanks again for the support

> > nicki

> >

>

--

"Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI- Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

WOW! That is expensive! Our doctor told us the best thing we could do for our daughter was to get her out of the wheel chair and get her walking. We have never gone back to one since....but I know how it is when they get tired or are in pain. One thing we did do, when she was little was buy a wagon. it was the best thing ever, we could use it for her and her friends, and we still use it now (5 yrs later) to move stuff around. I am not sure if they would let you bring it into Disney or not, but it would be worth a phone call to them. Besides, it would be much cheaper then the stroller.

Maybe if you went to Disney with no stroller, wagon, or wheelchair that when they got tired, you could see a show or sit down for a treat? We have to do that with our daughter when we go to Six Flags and such.

Helen

Re: Re: thanks to everyone

What's the difference between a big stroller for a big child versus a wheelchair? Sorry, I just HAD to ask because I think half of the reasoms people reject people with disabilities who are in wheelchairs is because we perpetuate so much stigma on it instead of making it a normal part of life that just happens sometimes... . and make it int oa bigger deal than it is....

Issadora

On Tue, May 6, 2008 at 12:52 PM, nicolestiltner <nicolestiltner> wrote:

thanks for all the ideas.the only thing is that for emotional reasons we are trying not to associate wheelchairs with this disease if at all possible and disney doesn't have anything except wheelchairs. if that is what we have to do but i wanted to exaust all of the other options first.thanks, nicki> >> > i just wanted to tell everyone thank you for all of the support > that > > you have given my family since i joined just a few short days ago. > > right now i think this group is what is keeping me sane through all > > this madness.> > i just hope that all these doc app. get the girls under control > before > > july. we have a family vacation to disney world scheduled for the > > middle of july.

i hate to think that their first trip to disney > would > > be tainted by this stupid disease. we have already purchased one of > > those three wheeled strollers but unfortunately even though it is > the > > biggest one we could find my oldest daughter can not fit in it. > does > > anyone know where i can find a stroller that will fit a child who > is 4 > > ft tall and about 50 lbs. and that doesn't cost a small fortune. i > > would like to take a stroller for each of my girls so that even if > they > > are flared they will be able to go and have fun.> > > > thanks again for the support> > nicki> >>-- "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI-

Silver and Cold).my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I prefer the stroller personally. A good stroller is cheaper than a

good wheelchair, for one thing. They fold up more easily as well. Since

is likely to get up and run around as much as he sits, the

stroller is easier. ly, yes, we do get some negative reactions

when I'm pushing an empty wheelchair and he's bouncing around beside

it. That happens less with a stroller. He is big enough now that we get

some reaction to still having a stroller, but it's less.

Misty & (9, systemic)

>

> What's the difference between a big stroller for a big child versus a

> wheelchair?

>

> Sorry, I just HAD to ask because I think half of the reasoms people

reject

> people with disabilities who are in wheelchairs is because we

perpetuate so

> much stigma on it instead of making it a normal part of life that just

> happens sometimes.... and make it int oa bigger deal than it is....

>

> Issadora

[Guest guest]

Thanks to everyone who wrote about their personal reasons for don't ask, don't

tell. I think we have to admire and respect each and every one for their

personal decisions. In Sue's case, she had to tell people in order to find a

match for BMT. Thank goodness she didn't have to go that route, but everyone

has a valid point and we can take from it what we want and as Bobby says, maybe

change our opinion of how we felt. In my case, I couldn't hide it because I

cried all of the time, and how was I going to explain that, perhaps a new

" crying disease " ? (Remember the song CRY ME A RIVER?) LOL There were some

people I wish didn't know because they felt so awkward when they were around me

and didn't know what to say.

MY 2 CENTS,

Lottie Duthu

[Guest guest]

In my case, I couldn't hide it because I cried all of the time, and how was I

going to explain that, perhaps a new " crying disease " ? (Remember the song CRY ME

A RIVER?) LOL There were some people I wish didn't know because they felt

so awkward when they were around me and didn't know what to say.

>

> MY 2 CENTS,

> Lottie Duthu

_____________________________________

Hi Lottie,

I could not hide it from work because I was working in a health center (on a

University campus) and for convenience that was where I had a follow-up blood

test done.......and the white count was 93K. The Med. Lab Tech (in charge of the

dept) told me that that was the highest white count she had ever seen (but it is

not really that high for cml). She took it to one of the docs before telling

me.....but I was expecting bad results because I had a full blown night sweat

the night before the test. My white count had gone from 21K to 93K in a month.

My own work group was great, but for the health center in general, I kind of

felt like the 'token cancer employee' for awhile. Now, when I meet anyone who I

am going to do anything physical with (like gardening), where my lower endurance

could be obvious, I usually tell them right away that 'I have leukemia, but I

have had it for 12 years, so I am not going to die on you'......and that seems

to put them at ease about the leukemia and I don't have to make excuses when I

need to stop and rest. It is simply over and done with. This works well for me.

and as your wrote, I think every person finds what works well for them, but I

would not want to be hiding or covering up for something that will really be a

life long issue.

C.