Taking son with downs syndrome to Disneyworld

[cardan]

Hi
We are going to Disneyworld on 24/10/03 for 15 days, our son is 9 and has Downs Syndrome. He uses a buggy most of the time on outings as he tires very easily, he does not like going into crowded rooms or halls (so shows could be a flash point) as he has sensitive hearing and queuing is a nightmare with him. As we are also taking our 16 year old daughter we are anxious that we minimise the problems as much as possible, so she can still enjoy Disneyworld to its full. Our son is very stubborn and strong willed which makes life a little frantic at times. If any one has any experience of being in Disneyworld with a child with challenging behaviour I would be glad to hear from them. The above description makes him sound awful when infact he is adorable just a little headstrong! 10 hours on a plane is another unknown quantity but he wont be able to get off so we will just have to deal with that as things crop up.

Sandra
PS I think we are more excited than the kids.

 

[SueM in MN]

Welcome to disABILITIES.
Here is a link to a website that should be very helpful to you. It has helpful suggestions for sensitive kids.
One thing that might be very useful to you is to be able to use his buggy (called a stroller in the US) in queues with you. There is a link on the page link I gave you above that talks about Guest Assistance Cards. You can request one at Guest Services in any of the parks. You explain your son's special needs to the CM in Guest Services so that they can make a card (the GAC) that shows what sorts of accomidation he needs. In your case, being able to have his stroller treated as a wheelchair would be a big help.
Even with a GAC, you will still spend time waiting in queues because it doesn't give immediate access. You can minimize your wait by using fastpass as much as possible. If you are able to get to the parks early, you can also go on a lot of rides quickly in a short time.
Another thing that might be useful to you is to have picture you can show him about the rides ahead of time. The DIS Board photo gallery has a lot of pictures and there are other websites that also have good pictures.
Feel free to ask any other questions you can think of.

 

[Talking Hands]

Actually he sounds like a rather normal Downs child. Have a wonderful time at WDW.

 

[pumpkinboy]

Planning in lots of time when your son can relax away from the crowds can help with the behavior. I have an Aunt with Down's (who is now 64!!) and though very stubborn sometimes, with enough quiet time she is just wonderful. Come to think of it, nearly all children (and many grown-ups) can use frequent breaks to calm down during the excitement of a WDW visit.

I hope that you are staying at a Disney property, since the transportation sytem will allow your older child to go off on her own, or with one of you parents, and the other can attend to the needs of your son. My 6 year old son is wheelchair bound, with rather severe CP, and he get Royal treatment alomst everywhere in WDW; he had private audiences with all of the toontown characters, which he loved!! Warm and wheelchair accessible are a great combination, and add in the warm special attentions of Disney CMs and you have a great vacation form our perspective. Is it anywonder we became DVC members?

I hope your son enjoys WDW as much as mine does.

 

[HopperFan]

I have a son with Down Syndrome who lives for trips to Disney.

Last year he had a tumor in the middle ear which had to be removed, reconstructive work plus prosthetic hearing device. Bottom line - the hearing he regained is now has highly sensitive. We did do Disney after surgery and had one melt-down when someone yelled in the que next to him.

We have found that by taking his personal CD player with us - everywhere - he is able to enjoy his music, which not only keeps him busy when bored (your que line) but it also blocks out sounds that would upset him. Take a few Disney CDs and he may be ready for some of the shows. If you go to the World of Disney at DTD asap you can get CDs with music and sounds from the attractions, shows and parades.

The CMs are so good there, explain to them the sound issue and they can probably put you in seating with the least amount of sound. Or let him wear his headphones during the show, without music turned on, it may buffer some sound.

Have a wonderful trip !!!

 

[s&k'smom]

As a matter of fact we plan to use a wheelchair for him next time even though his disability is not physical once he begins to tantrum he can be uncontrollable and being able to transport him will save us much frustration.

NOTE to S and K's mom: I am SO SORRY. I meant to QUOTE your post and I hit EDIT instead.......I realized it as soon as I hit SEND and tried to stop it, but it was too late. I am very sorry because you had lots of good stuff in your post and I wanted to add some information to a new post for you. There are hidden dangers to typing with a DD who does not want you to be on the computer.
Sue
I don't remember if you ever said how old your child is, but if he's small, you might want to rent a child or small adult size wheelchair from one of the outside medical supply companies:
Care Medical:
http://www.caremedicalequipment.com/

Walker Mobility:
1-888-726-6837
www.walkermobility.com

Colonial Medical
http://www.colonialmed.com/about_cms.html

I've also heard that
http://www.all-about-kids.com/main.htm
rents special needs strollers (sort of like very large umbrella strollers.

The strollers for rent at the parks are mostly adult size (they appear to have some child size ones, but in 17 years of visiting, I've only seen a couple). Also something to consider is a seat belt. The park rental wheelchair don't have them. For the few times when we have had to trade DD's non-folding wheelchair for a folding one, it is amazing how easily she can arch her back and pop herself right out of the wheelchair. She's very obsessive about only having her own wheelchair; even though she will agree to sit in another one, as soon as she is in it, she doesn't want to be anymore.

 

[cardan]

Thanks for all your replies; it really has given me some ideas. I just want it to be a holiday in a life time for my kids. They have had a tough year; both their nanny and great nanny have passed away. my son is also very strong and when he decides not to do something nothing can be done about it (my husband and I feel a little out of control sometimes) my mum is coming with us to lend a hand, so hopefully we should all be able to do everything we want even if my mum has to take Daniel off somewhere (she says she is not coming for a holiday just to help out, bless her).
I started making a book to show him what to expect, and getting him used to his CD player and ear phones.
We have been to Disneyland Paris and had a great time but that was 4 years ago and he was more manageable then. I have been told that Disneyworld Florida is beyond belief and I just can’t wait
4 weeks to go!!!

Sandra

 

[phillybeth]

I haven't traveled to disney with a child with Down Syndrome, but I have traveled extensively with my uncle who is now 56- pumpkinboy my uncle is one of the oldest his doctors have ever seen so I am sure it is the same with your aunt. I love going to Disney with my uncle, although it has been a few years. He retains that childlike sense of wonder and it makes it all new for me again, seeing it through his eyes.
Even back in the 70's, Disney was one of the few places my family could go and not be made to feel different because of my uncle. Disney was so wonderful and accomodating, and still is.
The heat seems to bother my uncle more than anything, so you might want to consider a GAC so you can wait in a shaded area. My uncle is scared of the water so a pool break does not work for him, but he definitely benefits from some downtime in the afternoon- not necessarily a nap but some time in the room, watching TV and relaxing. Try earplugs or earmuffs if your son will wear them for noise control.
As far as being stubborn goes, I remember my uncle plopping down in the middle of Main St and refusing to move after a parade because he was tired. There was no budging him! Fortunately the CMs were very understanding and got him drinks and ice cream until he was rested enough to move to a bench. It was probably only 10 minutes but it felt like forever!

 

[BCV23]

We have a 21yo son with Downs who like HopperFan's son lives for our trips to WDW. Although he has always been sensitive to noises for some reason most things at WDW don't bother him at all. The only time I can recall noise bothering him was when we did an Illuminations cruise some years ago. Our boat was underneath the bridge and maybe it was the extra reverberations but he hated that experience. Otherwise he handles the crowds and noise well.

At nine though I think he was still at the point that he refused to go in dark rides although he had enjoyed them as a baby and early toddler. Not that your son will be the same. Our strategy was to all go through the queue together and when and if he started to balk, my husband or I would just get out of line with him. That way our other two still enjoyed the ride with one of us and I think it also always tempted him to try that ride next time. He still refuses to go on Dinosaur...won't even enter that land but plops himself down on a bench right before the bridge or whatever it is. He also refused the one time I tried to take him on It's a Bugs Life. We don't do Alien Encounter either although he seemed to handle it fine the one time my husband and sons experienced it. Anyway my suggestion would be to just be open to his reactions. He may surprise you with what he will enjoy. I bet he will really enjoy the magic.

I totally agree with phillybeth about some downtime. We always take afternoon breaks. We all appreciate them. Sometimes our son just wants to hang in the room from that point on. If so I'm always happy to stay with him and perhaps your mother will be too. Other days he is ready to go back out for the evening.

I also agree with phillybeth about how wonderful the CMs are with special needs folks as well as siblings. Two of our three have special needs....our son with DS and type I diabetes juvenile onset and our daughter has cp. The CMs are always so kind with them but when our oldest was a child...he's now 23...the CMs seemed to go out of their way to give him a little extra attention too. That meant so much. I'm tearing up remembering it.

I hope your entire family has a very magical stay. Lots of pixie dust for you!

 

[Laney's Mom]

We were just there in Sept. with our 13 year old daughter with Down syndrome. She sounds an awful lot like your son. I am very pleased to tell you she did GREAT! Because it was our first visit we unknowingly went on practically every attraction. (there were no lines the first week of Sept.) Some of the rides she said there was no way she would go back on for a second time but she seemed to enjoy everything. I carry cotton balls with me where ever we go for her ears. Just the little bit they muffle loud noises seems to help her. We spent time every day doing what just she wanted to do for a little while. It was usually the teacups at MK or chumming with the characters but then she was happy to go on with the tour with her dad, 8 year old brother and I. The CM's were so great to her, They noticed her right off and always did something nice for her. WDW is magical, there is something about it that made our family closer, I hope you have the same wonderful time we had.

 

[pampam]

My d.s. daughter loves Disney World. We go every chance we can. She too doesn't like loud noises. I do believe they actually hurt her ears, although I have no way of knowing. The attractions at wdw don't seem to bother her too much. The sudden explosions at Illuminations bother her. Get the disabled guidebooks for each park. They explain if the attractions are w.c. accessable, or if there are loud noises. Since there are a few of you going, perhaps someone could go on the ride first, and then you may know if your son can handle it. Also, sometimes we go to first aid for a rest if she has had too much stimulation. They have cots and a quiet area where one can go for a break. When she has had a long enough rest, she lets me know. I stay right there with her.

 

[cardan]

Thanks for the reply, 1 week to go and ds is ill, he has flu so i'm hoping it dosn't go to his chest. He is so excited (we all are) he's been carrying mickey mouse around all week. I've got ear plugs walkman and everything else reccomended so we should be ok.
sandra

 

[BCV23]

I hope your son feels better very quickly and that all of you have a very magical trip!

 

[tigger2on]

Though I do not have a child with D.S., I do have a severly disabled soon to be 7 year old who loves Disney. We also have flown to the UK from Canada with her and have requested the bulkhead as it has more leg room (Ry kicks alot)and I can change her nappy while standing as the toliets are too small for us to do this.
the bulk head also has table like surfaces that fold down from the wall usually used for baby air seats/ bassienets. We used it for extra space for toys, snacks, books, diapers, wipes.... instead of having to grab a bag from overhead everytime.
We travelled BA last time and liked the fact that they had personal tv's so everyone could chose what they wanted to watch. They had 2 kids movies plus a cartoon channel as well. And they have great activity packs...and serve excellent kids meals before they serve the adults meals.
I would call your travel agent or the airline directly and ask for the extra room. !0 hours is long for an adult let alone a child!

 

[cardan]

Hi, looks like you arrive the day we get home, hope you have a lovely time. I've just finished packing ( can't believe only 2 days to go) we are travelling with American airlines and they will only allow 1 companion with a disabled person to sit in the bulk head ( we may get lucky with all 5 of us if we arrive at the airport early) I did have 5 seats in a row reserved with them but to cut a long story short the travel agent missed the deadline to issue tickets and our booking along with seats were cancelled, an issue still to be resolved with Airline network! we now have a 2 seat and 3 seat so that should be fun. I only found out last week when I phoned AA to see if our seats had a laptop port ! anyway we will get there early and try for all bulk head seats , its Concords last flight from Heathrow on Friday as well, so the airport will be busy. Airline networks did not seem to understand why I was so upset that they had ruined all our seating plans they even suggested that both my children were old enough to sit on there own if needs be 16 and 9 (obviously had no experience of special needs kids) . Travelling with any child can be difficult throw a disability into the equation and anything can happen (Daniel refused to get on the plane 2 years ago , and he is so strong it took 3 of us to carry him). Anyway I'm going to try to stay calm, not worry and fingers crossed we will get 5 seats together, Daniel will run on to the plane and love every minute of the flight. Well you can but hope!
Thanks for your help and have a safe journey.
Sandra

 

[Figaro]

Sandra, hope you all have a wonderful time! I have had great luck by showing up early at the airport and flinging myself on the mercy of the person who checks us in.

Northwest Air told me a few years ago that they couldn't assign bulkhead seats in case someone showed up in a wheelchair. Then when I was the person showing up in the wheelchair(smile), they said that they couldn't book bulkhead seats ahead of time unless the person needed to use an aisle chair on the plane. Well, since life has decided to see to it that I must have bulkhead seats(smile), I now have to use the aisle chair on the plane. It just seems sometimes that even when everything gets all settled, something comes along to make it more difficult.

Good luck on the flight and have fun at Disney!

 

[tigger2on]

That's too bad you won't be there when we are. We could have hooked up... Ryleigh loves other kids and it is always nice to have somone to chat with that understands what you're going through.
We had a three seater bulk head so if not five, you could fly 3 bulk head and 2 right in the seat behind you. We did that with my mom from the UK this past summer. that way we were able to take a break from Ryleigh and still have 2 of us to care for her.
This year we are flying Air Canada... they have given us seats way at teh back of the plane but we will go to the airport and they should give us them due to our needs. Ry is in a wheelchair and heavy. We are going in a one aisle plane so carrying here down the aisle, she'll be kicking people in the head ....
Post a trip report when you come home.... )
have a lovely time and good luck with the seats!
Suzanne