Input needed, please :)

September 3, 2004

Eileen,

I'm so excited for Becca!

Disney World is very stimulating, but there are some things you can do to

tone things down a bit. One is to go at a slow time of year, like early

December. Another example--you can go to a character breakfast instead of

standing in lines to see characters. If you stay right at Disney World,

you can take the parks in small bites, going back to your hotel to swim

or just relax. Does Becca like animals? If the Wish group would let you,

you could stay at Disney's Animal Kingdom Lodge where you can see

giraffes and other African animals from your room (you have to ask for a

savanah-view room); then, if Becca couldn't handle much of the parks, one

of you could take your other child to a park while Becca stayed and

watched the animals or went to the storytelling session or swimming. Or

if you stay at Give Kids the World, you could spend a lot of time there

and just go to the parks for a small part of each day--I've heard there's

lots to do at GKTW, and everyone says they've loved it there. I think the

Disney characters even come there, and the kids get lots of presents.

If not a trip to Disney World, what about taking a Disney cruise? I

haven't been on one, but I would imagine it's not as overstimulating as

the theme parks. There are Disney characters on board and Disney shows,

so it would definitely have a Disney feel to it. BTW, one of the two

cruise ships happens to be named the Disney Magic. Hmm!

Another thought--would she like to have her room made over with an

over-the-top Disney theme? Like a princess bed and a mural with Disney

characters. Or maybe she'd like a playhouse in the backyard that looks

like Cinderella's castle or Mickey Mouse's house?

Hope you find something that's just right for Becca--and the rest of your

family!

-- Mom to:

Emilie (18), mito--complex IV, cp, ld

Kaitlin (18), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

September 3, 2004

Kerry,

>What about the Disney Cruise??...The

>other thing to think about is time of year, maybe going off season less

>people will be around. If she is set on Disney World the least crowded

>time of year is right after Thanksgiving and before xmas. Don't count

>on a pass getting you to the front of every line though. I depends on

>what your needs are and a lot of parks are now trying to do away with

>handicapped entrances and making 1 entrance for all visitors. I have

>had a lot of problems at the Disneyland & Disney World Resorts when it

>comes to the " Guest Assistance Pass " . I am sure you will find a wish

>that she will love and that you will all enjoy. Happy planning!!

>

LOL! We were on the same wavelength with our ideas.

As far as the pass goes, I don't know this for a fact, but I've heard the

make-a-wish kids get more special treatment than the kids who have the

Guest Assistance Passes. I do know when we were there that they roped off

an area at the Epcot fireworks show just for Wish kids, and I have heard

they get more front-of-the-line treatment on rides.

Another thought, Eileen--there's a section called disABILITIES on

disboards.com where you could ask questions that might help you decide if

Becca could handle Disney World. I know there are a number of people on

the board who have taken kids who have autism.

Take care,

-- Mom to:

Emilie (18), mito--complex IV, cp, ld

Kaitlin (18), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

September 3, 2004

Becca has been accepted for a " wish " from Make a wish, and I have

asked her what she'd like if she could make a wish and she

said " Disney.. Magic " so that sounds to me like she'd like to go to

Disneyworld. I was thinking that's what we'd request, until

today... A friend of mine gave me free passes to a waterpark

outside of Catskill, NY and we went today. Oh, man, what a

nightmare!! She is developmentally delayed, and has a dx of

Atypical autism, which is mostly for her IEP. She is usually pretty

easy to get along with, when you give her what she needs/wants that

is. The noise of the water was driving her crazy and waiting, that

was a no go. I understand that I can obtain a pass at Disney to get

us to the front of the lines, but I don't know if I can take the

stress of taking her there and having her freak out because it's too

crowded, or too overstimulating or whatever. I also have a

typically developing 7yr old who wants to do what a 7yr old wants to

do, and she's pretty good about understanding our limitations as a

family, i.e., Becca, or my MS acting up and us needing to sit out on

stuff. What should I do?? I know we may never be able to get to

Disney any other way, financially and all, but should we pass up

this opportunity to save some stress, or go and live with it and

sedate as needed?? Me, not her :-)

Thanks for any information/input you can give me, eileen p

September 3, 2004

What about the Disney Cruise?? You can order their DVD or video. The other thing to think about is time of year, maybe going off season less people will be around. If she is set on Disney World the least crowded time of year is right after Thanksgiving and before xmas. Don't count on a pass getting you to the front of every line though. I depends on what your needs are and a lot of parks are now trying to do away with handicapped entrances and making 1 entrance for all visitors. I have had a lot of problems at the Disneyland & Disney World Resorts when it comes to the "Guest Assistance Pass". I am sure you will find a wish that she will love and that you will all enjoy. Happy planning!!

Kerry

Plymouth, MA

Hailey 5 yrs Mito & FOD

Brenna 3 yrs Mito & FOD

-----Original Message-----From: Eileen Phelps Sent: Friday, September 03, 2004 7:26 PMTo: Mito Subject: Input needed, please :)Becca has been accepted for a "wish" from Make a wish, and I have asked her what she'd like if she could make a wish and she said "Disney.. Magic" so that sounds to me like she'd like to go to Disneyworld. I was thinking that's what we'd request, until today... A friend of mine gave me free passes to a waterpark outside of Catskill, NY and we went today. Oh, man, what a nightmare!! She is developmentally delayed, and has a dx of Atypical autism, which is mostly for her IEP. She is usually pretty easy to get along with, when you give her what she needs/wants that is. The noise of the water was driving her crazy and waiting, that was a no go. I understand that I can obtain a pass at Disney to get us to the front of the lines, but I don't know if I can take the stress of taking her there and having her freak out because it's too crowded, or too overstimulating or whatever. I also have a typically developing 7yr old who wants to do what a 7yr old wants to do, and she's pretty good about understanding our limitations as a family, i.e., Becca, or my MS acting up and us needing to sit out on stuff. What should I do?? I know we may never be able to get to Disney any other way, financially and all, but should we pass up this opportunity to save some stress, or go and live with it and sedate as needed?? Me, not her :-)Thanks for any information/input you can give me, eileen pPlease contact mito-owner with any problems or questions.

September 3, 2004

Hailey's trip was to Disneyland in California ~ she wanted to see Sleeping Beautys Castle. I have heard of a lot of families going to Disney World in Florida and speaking very highly about staying at Give Kids The World. I hear there is a lot to do right there. The reason I was thinking you might want to look into the cruise was that you won't have to go far to take a break in your room when needed. I also hear that the service is incredible. Getting to and from the Disney World parks is very exhausting.

Give Kids The World site:

http://www.gktw.org/

-----Original Message-----From: 31528@... Sent: Friday, September 03, 2004 8:56 PMTo: Mito Subject: Re: RE: Input needed, please :)Kerry,>What about the Disney Cruise??...The>other thing to think about is time of year, maybe going off season less>people will be around. If she is set on Disney World the least crowded>time of year is right after Thanksgiving and before xmas. Don't count>on a pass getting you to the front of every line though. I depends on>what your needs are and a lot of parks are now trying to do away with>handicapped entrances and making 1 entrance for all visitors. I have>had a lot of problems at the Disneyland & Disney World Resorts when it>comes to the "Guest Assistance Pass". I am sure you will find a wish>that she will love and that you will all enjoy. Happy planning!!> LOL! We were on the same wavelength with our ideas.As far as the pass goes, I don't know this for a fact, but I've heard the make-a-wish kids get more special treatment than the kids who have the Guest Assistance Passes. I do know when we were there that they roped off an area at the Epcot fireworks show just for Wish kids, and I have heard they get more front-of-the-line treatment on rides. Another thought, Eileen--there's a section called disABILITIES on disboards.com where you could ask questions that might help you decide if Becca could handle Disney World. I know there are a number of people on the board who have taken kids who have autism. Take care, -- Mom to:Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptomsIan (22) migraines...and wife to Tim, who has a heart of goldPlease contact mito-owner with any problems or questions. .

September 3, 2004

Dear Eileen,

I have been in your situation. I really cannot give you advice except I

can share our experience. Leanna, who is 7 got a " wish " from make a wish.

She had never been to Disneyworld or Disneyland (we live in LA). I have gone

to Disneyworld before I had children and I knew how stressfull and tiring it

it was for me an adult back then. Please remember, though, that our kids go

under different circumstances, get better treatment etc. We decided as a

test to take Leanna to Disneyland for 2 days. She liked it, but she did get

too tired even though we stretched it into 2 days and had a handicapped

pass. Leanna also loves swimming pools. She cannot technically swim but who

cares? When she got back, we gave her the choice. Because she cannot play

outdoors like other children in the heat, the above ground pool is the only

safe recreation for her. A clumsy child can't hurt themselves in water. Sure

enough, she chose the pool and they built her an awesome sundeck even with

wheelchair access in case the future holds that for her.I will tell you,

that was so amazing this summer for her. Of course, it depends on what your

child loves. The pool was a gift that keeps giving and I pray to God will

continue to do so for many summers to come. It cost the foundation just as

much as one week to Disney for us. However, I do know someone that went to

Disney and they told me it was amazing how much they accommodated them with

their needs. I guess you have to decide how much does your child love the

idea of Disney and how tired will they get. It is so individual because some

kids tolerate more than others. Leanna did not seem as excited about Disney

as we thought and so the pool was easy for her to choose. Good luck and if

you decide to go, I pray you have the best time ever. I have heard great

things about the Disney Cruise for sure. Hope that helps.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.Samya.org

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Input needed, please

Becca has been accepted for a " wish " from Make a wish, and I have

asked her what she'd like if she could make a wish and she

said " Disney.. Magic " so that sounds to me like she'd like to go to

Disneyworld. I was thinking that's what we'd request, until

today... A friend of mine gave me free passes to a waterpark

outside of Catskill, NY and we went today. Oh, man, what a

nightmare!! She is developmentally delayed, and has a dx of

Atypical autism, which is mostly for her IEP. She is usually pretty

easy to get along with, when you give her what she needs/wants that

is. The noise of the water was driving her crazy and waiting, that

was a no go. I understand that I can obtain a pass at Disney to get

us to the front of the lines, but I don't know if I can take the

stress of taking her there and having her freak out because it's too

crowded, or too overstimulating or whatever. I also have a

typically developing 7yr old who wants to do what a 7yr old wants to

do, and she's pretty good about understanding our limitations as a

family, i.e., Becca, or my MS acting up and us needing to sit out on

stuff. What should I do?? I know we may never be able to get to

Disney any other way, financially and all, but should we pass up

this opportunity to save some stress, or go and live with it and

sedate as needed?? Me, not her :-)

Thanks for any information/input you can give me, eileen p

Please contact mito-owner with any problems or questions.

September 3, 2004

I understand your situation! With several little kids, two with

special needs, myself with low energy levels with heat and walking, and

definite problems with the girls falling apart when traveling or too active,

we decided NOT to take any type of trip for Asenath's Make-a-Wish. We

thought it would be so much fun to take a cruise or to go to Disney World,

but knew it wasn't the right choice for our family, so....after lots of

thought and discussion with the Make-a-Wish staff we all decided a great

gift for Asenath was a wide screen television with surround sound system,

DVD and VHS system. They surprised us also with about 12 DVD's and VHS's

and a soft Tweety-bird pillow. You see, Asenath absolutely loves the " Land

Before Time " video series and with low energy (especially at the time she

received the gift) she would often sit and either watch the videos, on our

tiny television with one speaker broken, OR play on the floor with the " Land

Before Time " dinosaur toys she begged us to buy her. Needless to say, the

gift was a major hit with her AND the rest of the family. Watching a movie

is now like being in a movie theater and hopefully she will have many years

to enjoy the gift. We have already been able to enjoy it since March of

this year. It's been a hit!

I have heard of TONS of different ideas that have been granted. Pool,

hot tubs, trips, television sets, computer sets, redoing a bedroom or

playroom, play yards/swing sets, anything your child could desire! And if

they are too young to decide or are cognitively unable to decide for

themselves, the family is encouraged to discuss different ideas and make a

decision that they feel would best fit the child. There are sometimes too

many choices, but it often can be hard to think of one that doesn't include

challenges for a handicapped/special needs child!!!

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Input needed, please

> Becca has been accepted for a " wish " from Make a wish, and I have

> asked her what she'd like if she could make a wish and she

> said " Disney.. Magic " so that sounds to me like she'd like to go to

> Disneyworld. I was thinking that's what we'd request, until

> today... A friend of mine gave me free passes to a waterpark

> outside of Catskill, NY and we went today. Oh, man, what a

> nightmare!! She is developmentally delayed, and has a dx of

> Atypical autism, which is mostly for her IEP. She is usually pretty

> easy to get along with, when you give her what she needs/wants that

> is. The noise of the water was driving her crazy and waiting, that

> was a no go. I understand that I can obtain a pass at Disney to get

> us to the front of the lines, but I don't know if I can take the

> stress of taking her there and having her freak out because it's too

> crowded, or too overstimulating or whatever. I also have a

> typically developing 7yr old who wants to do what a 7yr old wants to

> do, and she's pretty good about understanding our limitations as a

> family, i.e., Becca, or my MS acting up and us needing to sit out on

> stuff. What should I do?? I know we may never be able to get to

> Disney any other way, financially and all, but should we pass up

> this opportunity to save some stress, or go and live with it and

> sedate as needed?? Me, not her :-)

> Thanks for any information/input you can give me, eileen p

>

> Please contact mito-owner with any problems or questions.

>

September 3, 2004

Eileen,

I don't know about the wish part of it,but we just went to Disney World in

March. We got a pass,for Logan,and a stroller. We would have been able to get

him a wheelchair,but he is still small enough for a stroller. We really didn't

have any trouble getting to the front of the lines. On some of the rides,they

had the fast pass,,and that is where you go in. We didn't go to Epcot,so I don't

know how they were. I think that the Magic Kindgom was the best at the

passes,,and maybe Animal Kindgom coming in second. We didn't spend too much time

at MGM,either.

Depending on your child,,I will say that it is VERY overstimulating,,at

least for Logan. He has autism,,and alot of the autism traits,that we hadn't

seen in a while seemed to come back. We were constantly calling his

name,,everytime we stopped the stroller,he would get out and wander off. I can't

believe he didn't get lost. He also started the echolalia again. He was very

spacy,and if you look at his eyes,in the pictures,you can see that

look,especially the one with Goofy.(

http://www.picturetrail.com/gallery/view?p=999&gid=5006339&uid=2523945&members=1

)

All in all we had a great time,,I just hadn't prepare myself for the

regression . It took a good month before he was back to " normal " ,but I would do

it all again,in a heartbeat. He had the best time. I would hope that ya'll would

be in one of the resorts. We stayed in a house,so we had to do the monorail,then

the tram,then walk fro the tram,to the car. By the end of the day,the last thing

that Logan needed was hundrends of people squishing him. Plus,we had to leave

the stroller,at the gate,,so we had to walk a distance from the tram drop off to

our car. Several times I ended up carrying Logan,,and dragging Ethan. One

night,I decided to squat down and have Logan get on my back,LOLOL I have no idea

what I was thinking,because I couldn't straighten my legs,to get up,,,and kinda

fell over forward ! I was cracking up,,but he didn't think it was funny !! LOL

Also,,the character meals are definitely the way to go. That way you aren't

running all over trying to find all the characters.

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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September 4, 2004

Eileen

We went to disney with one Mito kid (), one autistic kid (Gaige) and one with mild CP(Bliss)...so maybe I can shed some light on it. It was 's wish.

Gaige was so happy to see all those characters and stuff he actually did pretty well. He was walking but we had three adults...each one assigned to a child. Gaige has no sense of safety so we ran into more issues with that. Had we had to wait in line that would have been extremely hard for him but we never waited in one line.

The best advice I can give you is to stay at GKTW. Even if you have to wait to get a spot, it is well worth the wait! They give you a button identifying you as a wish kid. So you get to skip the line. AND...the best part is the world stops when a character sees a button! They wont even have to wait in line for that! Duck kidnapped us and took us to this special place!

When you get to GKTW, the first night, one of the parents goes to orientation. They tell you how to use the button...and many other tips. They are very helpful. At GKTW, they have a few rides...a spinkler park...a movie theatre (they show videos on a theatre screen)...and arcade and an ice cream parlor that is open like 18 hours a day or something! YOu will also get a one day pass to Sea World and one day at Universal and a four day pass at Disney...maybe its only three...I forget now. They go into your room every day while you are out at the parks and leave gifts for all your kids...you get gifts when you arrive too. They have a cafeteria that serves bfast and dinner...and the ice cream shop has sandwiches.

didn't have a ton of energy either...so we would be there when the park opened and then we would stay a few hours...go back and have a sandwich and nap and then back out for a couple hours. One day he was really tired and we just spent the whole afternoon at GKTW. We never did eat dinner there but ate bfast everyday.

We went the first week of November and it wasn't too crowded and wasn't too hot. The only regret I have is that we should have spent all the time we wanted in the Magic Kingdom and not worried about the other parks until then. MGM and Epcot are really for older kids and adults. Animal kingdom was nice but we just did a couple things there (loved the Safari). Universal is largely for older kids and teens but they have all the nickalodeon characters which Gaige is much into so that was exciting. Also, thier kids section was really fun and bright and colorful! I love Seaworld when I went as a teenager and Gaige loves animals and fish and bugs a ton but it was pretty boring overall.

Of course all of this is just my opinion! Let us know what you decide! I am so glad we did it even though it was tiring and at times stressful...the memories are so important. My little Bliss who was only 18 mos old when we went looks at the pictures at least once a week...which is great to help her restore memories of .

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy. www.LifeofLoveProject.orgwww.HeartLiftersGallery.comCrazy Lizzies!! PURSES!

September 4, 2004

I forgot to mention at GKTW...on thursdays they have a character breakfast and one day they have a birthday party and one day santa comes to visit and they have a snow machine which is a joke but the kids are none-the-wiser. They are always doing special things!

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!

September 4, 2004

Darla,

What an awesome idea. I can see our children loving that since one of the

main activities(If you can call it that) they can enjoy is being a couch