Re: Elec. chair?VENT-Long

[Guest guest]

Cindy,

you may infact get better help and information by going to the

airport in person and refusing to leave until you get all of the help

and information you need in advance of your trip. You need to explain

to these people that this is a newly disabled person/ young adult and

this trip could make or break how he feels about himself and his

disability and it needs to run smoothly to show him that he has his

independance back.

You need to see if they can organise for Dylan to use his chair to

the gate and then have yourself or someone else collect the chair

from the gate and place it into the cargo area, and then to have it

ready again for him at the gate ASAP. They need to organise this to

run smoothly so that Dylan can see that he can cope with this himself

if you weren't with him. Then you need to make sure that they can

accomodate the chair in the cargo bay and that they understand this

this is not just something like a canoe or bike that is for

recreation they are dealing with someones independace (esentially

someones legs (I mean this is the same as dealing with someones

prosthetic limbs etc). They need to load it last so that it is

available first at the other end.

If you go in person before hand you can demand help and information

becasue you are there in person and they can't just ignore your call

etc and if this person can't help then demand to see there supervisor

even if you have to go so high up that you have the head person this

is IMPORTANT and really you should NOT have to go to these lengths to

get the information that you need (it is not as if you are travelling

with a nuclear device here you are traceling with a disabled young

adult who uses a power chair (big deal) lots of people use them and I

am SURE this is NOT the first disabled person they have ever dealt

with and NOT the first power chair either.

Good Luck and keep demanind help and information.

Here is hoping the experience is a good one (after you finally get

the help and information you need) and that Dylan realises that now

with his chair he can go anywhere by himslef he has his independance

back.

Once you have donethis once I am SURE it will be easier to do again

in the future and once you have done it sucessfully once (or even if

you have hiccups) then you now what to do or not do next time and can

then teach Dylan hat he needs to know to do this for himself.

This is a HUGE learning experience for both of you as before you

never had to deal with or even think about how to travel if you or

your child was disabled.

Good Luck

Sharon

>

> From: Debbi Brown

> To: ceda

> Sent: Sunday, June 20, 2004 12:16 AM

> Subject: RE: Have you flown with a Elec. chair?

>

>

> Have you called the airline that you have your flight?

> They MUST have detailed information for you.

> Have you tried to ask for a supervisor and then THEIR supervisor.

> This should not be this hard as I am sure it happens all the time.

> Hope to hear from you soon!

> Debbi

> ***********

> I have called the airlines and have not gotten anywhere, I do

have a friend, calling a friend, to call me, She works in baggage at

the airlines we are flying. If I don't get any straight answers, I

guess I'll have to go to the airport and get some! I'm tired of the

run-around. I wouldn't think this was such a big deal. This happens

every day, right? I will go as far far as I have to to get this

worked out. There has to be a way to work this out.

> I know I can use the airport's manual chair and the hospital's,

but want I want to show Dylan is the freedom this chair can give him.

To go anywhere, with no one having to push him. I want him to feel

the independance. He doesn't need to know how hard this is too figure

out, well, not just yet anyway. First I want him to know the freedom

it can give him, before he knows how hard it is to make these

arrangements. Only then will he have the will to fight for it

himself. This is so hard to deal with a boy that is 17, nearly an

adult, knowing what to hide from him and knowing what to teach him,

so he can do this for himself soon. It all happened so fast. Ohhh...

I'm venting again.... Oh well. This is the place.... But I know I

have to learn the system, before I can teach him. I want this trip to

let him feel the independace the chair can give him. Ya know? Like if

he gets really mad, and wants to get away, he can. And he can come

back. He will not rely on me to get him from point A to point B,

Well, I don't know where those are yet either I have talked to

Mike, about the empowerment these trips are giving me. I haven't left

home alone for 12 years. This syndrome has taken me out my safety

net. The thought of flying with a handicapped nearly/adult child in a

wheel chair, trying to show him the way, when I am lost, is hard. But

I know I will find my way. I have been a mom for 28 years. 5 boys.

I've had lots of trials and tests, but EDS is tough. I just feel this

experiance with his E. wheel chair and this trip can make or break

his feelings on what it can mean to him. My gut feelings are never

wrong.

> Debbi, this isn't for you to respond to, just me venting,

thinking out loud. Guess I'm a bit scared too, just like him. Where

are we headed? Where are we going, and where will it lead us? " One of

those nights "

> Cindylouwho

>

>

>

>

>

>

>

>

>

>

>

>

> So. Cal. EDSer, in the Pink!

>

>

>

> Have you flown with a Elec. chair?

>

>

>

> Any of you taken your electric chair on a plane? I'm having

trouble getting

> the info I need. I have called the airlines and looked online and

I still

> have questions.

>

> 1. It has to fit in the door of cargo, well how big is the door?

> 2. all parts must be labeled, How, with what?

> 3. What do I do with the battery charger?

> 4. Some chairs are allowed in the passenger area in a chair

space, well

> which chairs? How do I get to be one of those? I want my eye on

this if

> possible.

> 5. They want me to have instructions on how to dissemble the

chair if

> necessary....

> now that would make me nervous.

> 6. I'm worried about damage to a $19,000 chair. Can I get

insurance, just

> for like a

> month and drop it? I can't afford the year price amount.

>

> The problem is this chair is very tall. The top of the back is

45 " off the

> floor. And there is a removable head rest that goes on. Any body

know any

> of these answers?

> Cindylouwho.

>

>