Questions about Wish Trips

[Andrina]

Hello everyone! Wow, it's been a long time since I've planned a trip! The last time my family went was EIGHT long years ago when I was pregnant with my youngest! Back then the site was young and alot different!

Flash forward and I know have a 7 year old disabled DD whose list of diagnosis is as long as my arm. (CP, Autism, siezure disorder, CVI, DD, MR blah blah blah) My neurologist suspects it is genetic but after every test known to man, we still don't know. What I DO know however, is that she is finally "awake" enough to enjoy Disney and she is the perfect age to finally go.

My pediatrician referred us to a Wish Organization (don't know if I should say names) After I researched them however, I found they were a bit unorganized and seemed to spend little money on the actual wishes. In fact, I think they were under scrutiny. My daughter is a nursing level of care, but not in imminent life threatening danger. She cannot walk, talk, feed herself etc. This wish organization accepted children like my daughter.

My questions are these: Do any of you have experience with Wish organizations who grant to children like my daughter? I don't want to be greedy, but as we only can have one wish in her lifetime, I don't want to do it wrong. And as I am on these boards, you guys know I don't want to do Disney wrong either!

I have searched a little, but am kind of a novice wading through all the information. Back in the early days, I think there were about 10 boards!

Anyway, would love to have some guidance about wish trips. In a perfect world, we would love to go in the spring of '09.

I would also love tips on where to stay, what to do, special things with a profoundly disabled child. She LOVES lights, lound noise, music etc--so I am thinking she is more of an EPCOT and MGM girl than Magic kingdom. I also have a 13 DD and 11DS who keep asking when we are going to take her.

Many thanks in advance!

 

[oklamomof4boys]

I'm not sure if I can be of much help. My youngest son has a heart condition and seizure disorder and has been referred to Make a Wish. In fact we just met with our pediatrician today ( we see the cardiologists and neurologist quite a bit but Nathan is otherwise very healthy so he hasn't seen the pediatrician in several months so he wanted to give Nathan a check up before he finished all the paperwork). I know with Make a Wish they have to have or have had previously a life threatening condition. Right now Nathan's heart is stable and he is, hopefully, not in any imminent but since that could all change tomorrow, he qualifies.

I know what you mean about not wanting to be "greedy" but also not wanting to "waste" your one and only wish. We debated quite a bit as to whether this was the right time for Nathan's wish, but this has been a difficult year for him for a variety of reasons so we decided to go ahead with it.

I'm not real familiar with other wish organizations but I do know there is a morning radio show that grants wishes to WDW for children with health issues( including ones similar to your daughter's)- but it is a group trip in November. The trip sounds absolutely incredible and we considered doing that but Nathan doesn't want a trip to WDW for his wish. Good Luck.

 

[alizesmom]

My son also has multiple problems (CP, profound MR, hydrocephalus, epilepsy, CVI etc, etc, etc). We took him on his Wish trip last Dec. I had guilt that maybe we were doing the trip more for us than him but we found he so totally enjoyed himself, cooing and smiling the whole time. This is a time to choose special memories. Go for it. Karen

 

[SueM in MN]

Hello everyone! Wow, it's been a long time since I've planned a trip! The last time my family went was EIGHT long years ago when I was pregnant with my youngest! Back then the site was young and alot different!

Welcome back.
This board started in late 1999 or very early 2000 and at first we only had a few posts a week. Look how we've grown!

My questions are these: Do any of you have experience with Wish organizations who grant to children like my daughter? I don't want to be greedy, but as we only can have one wish in her lifetime, I don't want to do it wrong. And as I am on these boards, you guys know I don't want to do Disney wrong either!

There are quite a few Wish granting organizations that might use Give Kids the World Village for stays (click here for link) besides just Make a Wish (one of the better known ones). So, one of the first things to do might be to see if your wish granting organization uses GKTW, someplace else, or allow you to pick the place.

I have searched a little, but am kind of a novice wading through all the information. Back in the early days, I think there were about 10 boards!

Anyway, would love to have some guidance about wish trips. In a perfect world, we would love to go in the spring of '09.

The one place I would suggest you check (if you haven't) is the disABILITIES FAQs thread near the top of this board (it's marked with a green arrow). Post 3 in that thread has some links other websites and to past threads that might be helpful. There are some links there specifically about WISH trips.

I would also love tips on where to stay, what to do, special things with a profoundly disabled child. She LOVES lights, lound noise, music etc--so I am thinking she is more of an EPCOT and MGM girl than Magic kingdom. I also have a 13 DD and 11DS who keep asking when we are going to take her.

Many thanks in advance!

If you could give a little more information, it would be easier to suggest things she might like - for example, I'm assuming she has either a wheelchair or special needs stroller.
Would she be able to be lifted out of the wheelchair? Can she sit next to someone on a ride seat?
Is she able to go on some rides where she would be jostled, or not?
Is she afraid of the dark?

With what you posted so far, here's my take on the parks:
MK - has a lot of lights, music and action, but it is also the oldest park, so it is least accessible. It has a lot of very short rides (literally 2 minutes) and for many of those, you will need to transfer her out of her wheelchair/stroller.
Some rides I'd especially suggest:

• Small World (has a wheelchair accessible boat)
  The Many Adventures of Winnie the Pooh (has a wheelchair accessible ride car)
  Dumbo (need to transfer)
  Peter Pan (if she is pretty easy to lift)
  Mickey's Philharmagic - a 3D movie with lots of movement and GREAT music from Disney classic cartoons; can stay in wheelchair
  Haunted Mansion
  Country Bears (musical show with bears; can stay in wheelchair)
  Tiki Birds
  Jungle Cruise (can stay in wheelchair)
  Aladdin's Magic carpets - a ride similar to Dumbo, but can stay in wheelchair
  Buzz Lightyear (lots of lights, movement; can stay in wheelchair)
  The afternoon parade

It can be a very busy park, noisy, with a lot of distraction. If you are there in the evening, the lights are beautiful. It is truly a different park at night.
She would probably greatly enjoy the Spectromagic Parade - a night parade with music and lots of lights. There are handicapped viewing areas right at the curb.

Epcot - an older park too, but more accessible and in general, the rides are longer.
There is a 'work in progress' FAQs thread about Epcot that should be helpful.

• Journey into Your Imagination - not as good as before the original was renovated, but not too bad.
  Imageworks at the exit of Imagination includes a carpet that makes sounds as you walk (or roll) over it, music that you can conduct by swinging your arms (or someone can help her swing)
  "Where's Nemo" in what used to be "The Living Seas" - a ride 'under water' with the characters from Finding Nemo; wheelchair accessible car.
  Soarin' - one of the best attractions. Beautiful music, a movie that you 'fly' thru in a hang glider. One of the best attractions; easy to transfer to and feels very safe and secure.
  360 movies China and Canada - music and lots of movement in the movies; can park the wheelchair and stay in it (everyone else stands)
  Impressions de France - a sit down movie with really wonderful music (wheelchair can park on the end of a row)
  3 Caballaros (I don't think that's how it's spelled) in Mexico - music, movies and audioanimatronics in a boat ride (wheelchair accessible)

Hollywood Studio - you were gone so long they renamed a park

• Playhouse Disney Live on Stage - just what it sounds like
  Voyage of the Little Mermaid - combination of live action, movie, puppets and all the great LM music. Wheelchair accessible (theater is pretty dark)
  Beauty and the Beast - stage show - a shortened version of B & B. Wheelchair accessible; ask to sit in front.
  Muppets 3D - a 3D movie with lots of action, and quite a bit of music
  Afternoon parade - lots of music
  High School Musical Pep Rally - outdoor with lots of music from the movies
  Fantasmic - a nighttime show with Mickey. Lots of music. Can be scary because it is representing Mickey's Nightmare (as my nieces' DD said "I really hope Mickey wakes up soon. This is getting scary")

AK - the is the newest park and is more accessible than the older ones. It can get hot and humid.

• Festival of the Lion King - a great show, lots of music, acrobats, live singers; just great. Wheelchair accessible
  Safari - a tram ride thru a real wildlife preserve (not exactly Africa, but sure does a good job of looking like it). There is not a lot of action, but the road is bumpy, which she may enjoy.
  Kali River Rapids - need to transfer and may get totally soaked, but if she likes wild things, this is pretty wild.
  Triceraptop Spin - a format similar to Aladdin at MK, but themed with Dinos. can stay in wheelchair.
  Nemo - the Musical, really good, indoor theater show of Finding Nemo with good songs and colorful costumes.
  Afternoon parade

Hope this gives you a start anyway. Ask as many questions as you need to and if you fill us in with a little more info, we can help you better.

 

[Cheshire Figment]

And don't forget one very important thing: It is the child's wish! If the child is capable of verbalizing, the Wish Granter will discuss initially with the child what the child wants to do. Then they will work with the parents to determine how best to assist in having that done.

 

[MisMikiNikiLynne]

Let me add to that a bit... that there are "wish granting" organizations out there that are well know that will refuse a child his or her wish because they cannot verbalize it themselves. I am the parent of a non verbal, medically fragile, special princess. It also depends on the "wish" granter... We did finally find an organization that accepted our daughter but her wish was limited to something "tangible". She got a hot tub (that she dearly loves)!! I have no regrets, but it definately was a learning process.

 

[Camster0307]

Let me add to that a bit... that there are "wish granting" organizations out there that are well know that will refuse a child his or her wish because they cannot verbalize it themselves. I am the parent of a non verbal, medically fragile, special princess. It also depends on the "wish" granter... We did finally find an organization that accepted our daughter but her wish was limited to something "tangible". She got a hot tub (that she dearly loves)!! I have no regrets, but it definately was a learning process.

I had heard this about MAW - but my daughter is non-verbal and I was the one who told the MAW coordinator what we wanted to do. No one knows my daughter like I do; besides we go to Disney every year ourselves so I know how much she get out of it.

Like Sue said, if you let us know what your daughter's abilities are, we can give your more insight. I will say this: my daugher is 13yrs.old, non-ambulatory, non-verbal, trach, oxygen, g-tube, seizures .... and we have a FABULOUS time in WDW! We just had our own MAW trip in Nov. - went really well.

Just post your thoughts and concerns; there are many here who can help!

 

[MarieS]

My boys have a genetic disorder causing severe CP, MR, nonverbal and other medical needs as well. They both use wheelchairs too. They received their wish in 2005. We had a wonderful experience with our chapter of Make a Wish and the people at Give Kids the World. Give Kids the World was a fabulous place and there were all sorts of special activities and surprises. My boys really enjoyed being there--especially the accessible carousel!
We never actually met anyone from MAW since they are located down state, so everything was done by phone or mail. They sent us a packet to fill out about their wish. I used stickers to signify their choices ( ie Mickey, Donald, Buzz) and then wrote a couple short sentences. They were totally fine with this.

My boys need to stay in their chairs for rides, but there were several that they really enjoyed--Buzz Lightyear ( lots of sounds and lights) and Pooh rides ( sounds, plus wind, etc). They also enjoyed Small World and the Nemo ride at Epcot. Magic Kingdom was their favorite park so we did those rides multiple times as well as the parade. They really liked seeing the characters and we booked several character meals ( MAW let me do most of the planning--my preference-so I booked these myself). Their favorite meals were the Pooh meal at Crystal Palace and breakfast with Spiderman at Islands of Adventure. ( We received tix for Universal and Sea World along with WDW through Give Kids the World). We went around Halloween and also did Mickey's Not So Scary Hallloween Party. They wore costumes and went around trick or treating for the first time.

Just one last note, wish trips to WDW are very popular. It is the top wish for our local chapter and it can take some months for a trip to be scheduled ( though of course trips can be scheduled in a matter of days depending on the child's situaltion). Ours also depended on the chapters money situation and the number of kids ahead of us.

The DIS boards were a huge help in planning the boys trip. I never knew about the First Aid stations before reading about them here. This was a huge help to my boys enjoyment at the parks since they could get out of their chairs and rest while I took care of tube feeds, etc. So if you have any questions, I am sure someone here knows the answer!

 

[momto2greatgirls]

Flash forward and I know have a 7 year old disabled DD whose list of diagnosis is as long as my arm. (CP, Autism, siezure disorder, CVI, DD, MR blah blah blah) My neurologist suspects it is genetic but after every test known to man, we still don't know. What I DO know however, is that she is finally "awake" enough to enjoy Disney and she is the perfect age to finally go.

Your daughter sounds a lot like mine...we had a wish granted by a local wish organization in CT. I have heard from other families with daughters like mine that each Make a Wish chapter is run separately and that some will grant our children wishes while others will not.


I don't mean to butt in here so ignore this if you like.........
You've said "every genetic test...." I was wondering if Rett Syndrome was in there....also, Rett can be diagnosed clinically as well. It's just that the combo of CP/Autism/Seizures sounds just like Rett Syndrome here's a link:
http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=13&Itemid=375

Good luck!

 

[Andrina]

Thanks for all the great information! Yes, the Boards have changed a lot but it is still an amazing place to get information. I love it here.

In regards to Wish organizations, my pediatrician referred us to a wish granting organization that received an "F" by a charity watchdog group. They look very official, the form is official, but they spend a lot of money on fund-raising and not much on wishes. We have a local Make a Wish and Dream Factory. Perhaps I should ask her (my Doctor) to try those. I have also heard of give kids the world. But my daughter is not medically fragile (right now) but she is confined to a wheelchair.

She is also non-verbal. She does use a very few pictures but I have no idea how I could get her to verbalize a wish. We figure Disney World is one of the best places to take her --and a family vacation for her older siblings too--because she reacts to sound, lights, colors and music. In fact, her favorite activity we do each year is go to the circus. She really responds to the lights and noise. Lots of laughing

I don't know if her inability to communicate will affect her wish--we would just like her to be able to communicate something! Maybe I could turn on a Disney video and show her reaction!

In answer to the Rett Syndrome question--it is one of the first tests we tried. It is not that. We still don't know We also did a chromosome test and even had a lawyer look into possible human error--nothing.

Thanks for all your help--I will keep you posted.

Becky and Liza

 

[alizesmom]

Thanks for all the great information! Yes, the Boards have changed a lot but it is still an amazing place to get information. I love it here.

In regards to Wish organizations, my pediatrician referred us to a wish granting organization that received an "F" by a charity watchdog group. They look very official, the form is official, but they spend a lot of money on fund-raising and not much on wishes. We have a local Make a Wish and Dream Factory. Perhaps I should ask her (my Doctor) to try those. I have also heard of give kids the world. But my daughter is not medically fragile (right now) but she is confined to a wheelchair.

She is also non-verbal. She does use a very few pictures but I have no idea how I could get her to verbalize a wish. We figure Disney World is one of the best places to take her --and a family vacation for her older siblings too--because she reacts to sound, lights, colors and music. In fact, her favorite activity we do each year is go to the circus. She really responds to the lights and noise. Lots of laughing

I don't know if her inability to communicate will affect her wish--we would just like her to be able to communicate something! Maybe I could turn on a Disney video and show her reaction!

In answer to the Rett Syndrome question--it is one of the first tests we tried. It is not that. We still don't know We also did a chromosome test and even had a lawyer look into possible human error--nothing.

Thanks for all your help--I will keep you posted.

Becky and Liza

Your daughter doesn't have to be medically fragile to stay at GKTW. It's for any child on a Wish trip. Good luck getting set up with a good organization. Karen

 

[SueM in MN]

Your daughter doesn't have to be medically fragile to stay at GKTW. It's for any child on a Wish trip. Good luck getting set up with a good organization. Karen

Many of the kids staying there are medically fragile, but the only requirement is that the child is on a Wish trip.