Child with Down Syndrome

[kdws]

HAs anyone traveld to Disney with a child with Down Syndrome. My son is 6 years old. I have never been to Disney so I do not know what to expect. HOw would a GAC card benefit me. YOu all seem super protective of the card and its advantages....so I can not tell if it would benefit my son. I can not identify the needs he has and how it applies to going to Disney..since I have never been to Disney. So if some has a child with down syndrome how has this card benefited your child. I read about being able to take a stroler in line I never would have thoguht of that?? I would like to take a stroller in line because Aidan has a tendency to bolt right out of line!!!
Kim

 

[SandrainNC]

Hi! I have a son with Down syndrome who is also 6. His third trip to Disney will be this coming November. So I can only speak from when he was almost 4 for his first trip and just turned 5 for his second. Haven't done 6 years old yet.

He does really really well at Disney. He is really good at just going with the flow of what is going on. We had a stroller for him both times (and will be taking the sit n stand this time because he now has a little brother and I need something they can both ride on). We figure if he gets really sleepy we will rent a Disney stroller since he can't really take a nap on the sit n stand.

We do not get a GAC for him. He doesn't have any problems with the lines (well he gets impatient just like every other child out there), but nothing that I feel warrants a GAC like getting overstimulated, etc.

All children with Down syndrome are so different, so only you know whether or not your son would benefit from using the GAC.

We try to eat early so he doesn't get overly hungry. We do not go back to the hotel for breaks because we are usually there when the parks close early. So we find a quiet spot so he can nap. And then take turns going to rides and stuff while he rests.

Disney is where he really learned to hold our hand during that first trip. He has a tendency to run off too. We get those ID things for his shoes. I tried one of those fanny pack leash things the first time and made the mistake of not practicing with it first and he was dragging me around Sea World. So that is when we worked on the holding hands thing. And he is now pretty good at it. As long as you don't let go of his hand. Then he is out of there! We are also working on this right now.

Sandra

 

[HopperFan]

My son has Down Syndrome, is 23 years old, and starting going to the World very regularly when he was one year old. For 20 years we did WDW without a GAC. I honestly don't think there was anything that the GAC could do for us. Down Syndrome in itself is no reason to get one. We wanted him to treat him just like the other children and we expected the same basic behavior from him.

The stroller in line could possibly help, but really I think it would be more work than help since he is mobile. This was the time for him to stretch his legs while we were able to keep him close. We preferred he ride when we were out in the open so that he couldn't take off easily.

Now he has developed a multitude of other issues that make it necessary for him to have the GAC card. These issues are not because of Down Syndrome, they are issues of their own that manifested in his late teens.

 

[ashleypmo]

This is my first post. I am so happy to find a community dealing w/ WDW and special needs all in one place!

We are planning a trip to WDW in may2008 w/ our four kids, the youngest of whom will be 2-1/2 and has Down syndrome. My biggest concern is that because of his loose ligaments, carrying him is like trying to hold onto a 20 pound bag of water with a ferret inside, all covered in velcro. He can pull his legs up and flip his body around, and because he doesn't really do a good job of holding onto me w/ his legs, he usually ends up sliding halfway down my body before I can get ahold of him and hike him back up. Plus the whole time he's trying to grab anything (and anyone) within his reach (hence the velcro reference). The thought of spending hours holding him in line after line while I'm all hot & sweaty is scarier than the old Alien Encounter attraction (which, BTW, I loved, and my 7 year old is soooo disappointed that it's gone, because he was to little to go on it last time we were at WDW, and for 4 years now he's been anticipating it). So I am lovin' the prospect of being able to take the stroller in line.

I have considered getting a GAC when we go, just in case he has any unforeseen problems w/ the lines, aside from ordinary terrible 2s!

 

[SueM in MN]

This is my first post. I am so happy to find a community dealing w/ WDW and special needs all in one place!

We are planning a trip to WDW in may2008 w/ our four kids, the youngest of whom will be 2-1/2 and has Down syndrome. My biggest concern is that because of his loose ligaments, carrying him is like trying to hold onto a 20 pound bag of water with a ferret inside, all covered in velcro. He can pull his legs up and flip his body around, and because he doesn't really do a good job of holding onto me w/ his legs, he usually ends up sliding halfway down my body before I can get ahold of him and hike him back up. Plus the whole time he's trying to grab anything (and anyone) within his reach (hence the velcro reference). The thought of spending hours holding him in line after line while I'm all hot & sweaty is scarier than the old Alien Encounter attraction (which, BTW, I loved, and my 7 year old is soooo disappointed that it's gone, because he was to little to go on it last time we were at WDW, and for 4 years now he's been anticipating it). So I am lovin' the prospect of being able to take the stroller in line.

I have considered getting a GAC when we go, just in case he has any unforeseen problems w/ the lines, aside from ordinary terrible 2s!

Your child would definately be benefitted by being able to use a stroller in lines so you don't need to try to hold him.
Strollers are not allowed in most lines or in some of the buildings (especially in Epcot). In order to be able to use the stroller in lines, you would need to get a GAC or a sticker that allows you to use the stroller the same as a wheelchair.
So, go to Guest Relations and explain your concerns/expected problems.

 

[SueM in MN]

HAs anyone traveld to Disney with a child with Down Syndrome. My son is 6 years old. I have never been to Disney so I do not know what to expect. HOw would a GAC card benefit me. YOu all seem super protective of the card and its advantages....so I can not tell if it would benefit my son. I can not identify the needs he has and how it applies to going to Disney..since I have never been to Disney. So if some has a child with down syndrome how has this card benefited your child. I read about being able to take a stroler in line I never would have thoguht of that?? I would like to take a stroller in line because Aidan has a tendency to bolt right out of line!!!
Kim

You have not been to WDW before, but you have had other experiences that would help you in figuring out his needs. Think about how he reacts in other lines because he will probably react that way in WDW lines.
Even without knowing that the 'stroller in line' was a possibility, if you told the CM that your child has a tendency to bolt in lines, chances are very good that the CM would suggest that as an accomidation.
You don't need to be an expert (or even know that much) about what is 'offered' at WDW. You are an expert on your child.

If you can't think of any needs he has, he might not need a GAC or any special accomodations (except maybe the stroller as wheelchair). One of the reasons people don't discuss the 'advantages' of the GAC is that there is not just one GAC that allows certain things. There is a GAC form that the CM adds stamps to, based on the needs you explain. So, there is more than one GAC.

Also, keep in mind that you don't need to request a GAC the first day. Some people who are unsure about their/their child's needs try it without a GAC. Some find that they do just fine and don't ever get a GAC.
Some end up needing a GAC and then are able to explain what problems they actually had in line instead of trying to figure out what problems they might have.

I don't know if you read the GAC information in the disABILITIES FAQs thread, but it you haven't, check it out.

 

[RACHELSMOM1]

This is my first post. I am so happy to find a community dealing w/ WDW and special needs all in one place!

We are planning a trip to WDW in may2008 w/ our four kids, the youngest of whom will be 2-1/2 and has Down syndrome. My biggest concern is that because of his loose ligaments, carrying him is like trying to hold onto a 20 pound bag of water with a ferret inside, all covered in velcro. He can pull his legs up and flip his body around, and because he doesn't really do a good job of holding onto me w/ his legs, he usually ends up sliding halfway down my body before I can get ahold of him and hike him back up. Plus the whole time he's trying to grab anything (and anyone) within his reach (hence the velcro reference). The thought of spending hours holding him in line after line while I'm all hot & sweaty is scarier than the old Alien Encounter attraction (which, BTW, I loved, and my 7 year old is soooo disappointed that it's gone, because he was to little to go on it last time we were at WDW, and for 4 years now he's been anticipating it). So I am lovin' the prospect of being able to take the stroller in line.

I have considered getting a GAC when we go, just in case he has any unforeseen problems w/ the lines, aside from ordinary terrible 2s!

Rachel is 3, and we had the same problem. We got a GAC in March and also requested to be able to use Stroller as a wheelchair. It was wonderful. We got a red placard to go on the stroller handle from Guest services when we got the GAC. We got to go in the wheelchair entrances and were accomodated well. For our June trip last week we had Rachel's wheelchair stroller (Convaid CX10) since it arrived 2 weeks before our trip. It is considered a wheelchair, and Rachel rode in it on the busses - the driver tied down the wheelchair. It was wonderful, no more waiting in line with our floppy baby and wondering if anyone would give up their seat on a full bus so she could sit in my lap and not slither to the ground or fall out of my arms. We even kept her in the wheelchair/stroller on the Great Movie Ride.

 

[ashleypmo]

Thank you for the tip Rachelsmom!

I hope nobody minds if I think out loud for a minute here... We will have 2 stroller children (our 2 yr. old DS wDs!), and our 4 year old. So can we put the red placard on a double stroller, or should we get separate singles for each child?

Also, I'm concerned about what will happen on the days my mom brings DS back to the hotel for nap. She really can't carry him back to the room from the bus stop; do you think a cast member would be available to take them on a golf cart?

ashleypmo

 

[cathy_s]

Since you've never been and aren't sure what to expect, I'd suggest that you go to guest services and explain that you have some concerns about long waits in line and get the GAC. Just because you have it doesn't mean that you have to use it! If you find it isn't necessary, count your blessings! It's much easier to carry an unused card than to realize (when you are a very long walk from guest services) that you really should have gotten it when you had the chance. By the way, because it's your first trip, make sure that you ask for the pins at GS that say that it's your first time at WDW.

My DD 13 has DS and also has very limited vision (legally blind) and great anxiety in long lines with low lighting or stairs. Our family has annual passes so we do frequent short trips. Depending upon our plans for the short time that we stay, sometimes we get one and sometimes we don't. MK has more physical barriers for her and we always get one there. Epcot and MGM are mostly flat surfaces and easier to navigate. (AK is not really one of her favorites.)

All we do is go to guest services, let them know she has her vision issues and she gets 2 stamps...one is for alternate entrance and the other is for seating at shows (front row).

Enjoy your time at MK and remember, if you don't see everything you want because you're moving at a slower pace, you have a perfect excuse to plan another trip!!!

 

[SueM in MN]

Since you've never been and aren't sure what to expect, I'd suggest that you go to guest services and explain that you have some concerns about long waits in line and get the GAC.

In most cases, if you say you are concerned about long waits in line, you will be told that the GAC is not meant to shorten or eliminate waits in line and that Fastpass is available if you want to shorten waits (that is even printed on the GAC card). You need to be able to explain what about long waits in line concerns you.

Thank you for the tip Rachelsmom!

I hope nobody minds if I think out loud for a minute here... We will have 2 stroller children (our 2 yr. old DS wDs!), and our 4 year old. So can we put the red placard on a double stroller, or should we get separate singles for each child?

They would give you a GAC or a sticker for a double stroller, but then you have the problem of what to do if you separate.
If you have 2 single strollers, you will only be allowed to bring the one for your child with DS into lines. That should not really be a problem for the 4 yr old though because the stroller would be available for getting from place to place, just not in lines.

Also, I'm concerned about what will happen on the days my mom brings DS back to the hotel for nap. She really can't carry him back to the room from the bus stop; do you think a cast member would be available to take them on a golf cart?
ashleypmo

She would need to bring a stroller. There might be someone in bell services available to bring them to your room if they get off the bus at the check in area. There could be a wait for that though, so it would be better to not have to deal with it. Some people find that the trip back to the resort is a bit too stimulating; you leave the park with a tired child and arrive at your resort with a wide awake one. Also keep in mind that the buses travel on a less frequent schedule in the middle of the day, so getting back to the resort may take longer than you think. And, unless you have a special needs stroller that is meant for bus transport, using the bus tie downs could damage it, so you will need to take your child out and fold the stroller on the bus.

Another possibility would be to find a quiet place to nap inside the parks. First Aid or the Baby Care Center work well for some people; some people use the monorail to go to one of the resorts nearby to MK and hang out in a quiet place in one of the MK resorts.

 

[Scutapipig]

My son is 11 years old with Down syndrome. On previous visits, we would just take it slow and follow my son's lead on what his needs were. We let him set the pace and did not request a GAC. We really had no need for one since he wasn't doing very many things.

For our most recent trip we did get a GAC, but it was simply due to the fact that he was trying more of the attractions and has a tendency to bolt when startled or anxious.

We requested a GAC for back row, end seat so that if he did bolt, he wasn't running for the exit and trampling 100 people on his way out. We used it mostly for the shows like Muppets (which he bolted before the show even started and we left the show), Mickey's Philharmonic (bolted mid-way through and watched without the glasses next to the exit doors), and Voyage of the Little Mermaid (bolted just as the show started, but watched the remainder of the show from a bench near the exit doors).

 

[VeroBeachGirl]

.

We get those ID things for his shoes.
Sandra

What is the shoe ID and where do you get them?

 

[SandrainNC]

I got these:

http://www.whosshoesid.com/

But I have read other people going to one of those machines that prints dog tags and luggage tags and using those instead.

Sandra

 

[alaskamusketeer]

Our daughter is 12 years old with Down Syndrome. We will be going to Disney World for her 5th trip this October. We have never needed a GAC for her. She does a good job of waiting in lines. We just go at her pace when going around the parks, the slower pace is nice for us. We have always been able to do everything we wanted. She still likes to take breaks and go back to the hotel in the middle of the afternoon for swimming. She loves going to "the castle", she also loves flying (we live in Alaska so she gets plenty of airplane time). The minute we land at home she starts asking to go back to "the castle".

 

[LisaBi]

My son is 14. Our first trip to WDW he was 6. The stroller in line was the Godsend. He couldn't stand in line that long, and we certainly couldn't hold/carry him. As long as he could stay in the stroller, everyone was happy! We did have a few issues with him jumping out of the stroller in character lines and running right up. So we learned that one of us would stand on line, and the other would push him around where he couldn't see the character until it was almost our turn.

Now we go all the time with just him and me. When he was a little older (10/11/12), we had some issues that required a GAC (I won't post details, but please PM if you like.) Just being one adult, the "you divert his attention while I wait/get FP/etc tactics" just weren't possible.

I now use a wheelchair for him in the parks - he just doesn't have the stamina to do all the walking and standing. And I'm happy to report we've been able to travel GAC-less! I can explain to him in FP attractions "we have to get a ticket that tells us when to come back for our turn" and he's OK with it. We're back to just needing the ability to sit/ride instead of stand/walk.

 

[handicap18]

My DD will be 3 when we go in Nov, she too has Down syndrome. I doubt that she would need the GAC, but having not heard of it before it is nice to know that it is out there if it is needed. We went back in Nov '05 just after she turned 1, but she was small enough to carry around. We didn't need to have the stroller for anything other than normal use.

While she is a lot bigger now she is also very independent and is starting to run. Even with that I don't see the need for the GAC in our situation. We'll also have 5 adults to watch over 3 kids. But like someone else said, every child is different. Use your best judgement and go from there. And above all else,,,,,,,,,,,,, have fun!!!

 

[PatMcDuck]

My son with Downs and Autism is now 17. When he was younger, we got the GAC to use the stroller as a wheelchair, like many others here. I must say, the card is much better and easier to use these days. We used to have to get one EACH DAY, and for each park. I mean, each day wait on a line for it.

My son has issues beyond the DS. He is mostly non verbal, and autistic, so he will just wander off in a blink. He also has issues with balance, and had surgery on both ankles to fuse them 7 years ago. Scolisis makes him walk sort of off kilter, almost a limp, not in a straight line anyway. We now use a companion chair (wheelchair without the big side wheels) at the parks. His stamina is too poor to walk around the parks and stand on the lines. But, most kids with DS do not have these issues. We do not get a GAC now, since he seems to do ok in his chair, and we do not stay in the parks all day or for hours on end. (we go to WDW almost every August).

 

[RACHELSMOM1]

Yes, every child is different. My DD Rachel , is 3 with DS, and also has stamina issues (related to her sleep apnea and heart problems). She also wears orthotics, including new ankle braces. Because of her respiratory issues we always carry our nebulizer to the parks - I have used it at MK baby change center, first aid centers at all parks, in addition to our hotel room. We got her wheelchair/stroller this spring and used it at WDW in June. It was a nice change to have the wheelchair/stroller compared to the baby stroller. We used the GAC and this also made our trips thru the parks more enjoyable. I have learned to advocate for my child and her disabilities, and I am not one bit shy to ask for any help she needs. Off Topic:Going to Disney for my October birthday (a certified Disney Mom/Disney Nut) and we are all so excited!! I will be dragging my family DH , DD7 , DD6 , and DD3 ,also DS31 and DIL29 - all to CRT, 1900 Park Fare, and PSB - because it is MY turn!!!

 

[ashleypmo]

My DS1 (oohh--almost 2, in another month!) w/ Down syndrome doesn't (so far) have any other health issues.

My main worry about our trip [which is still 10 months away] is the "carrying factor." His ligaments and joints are sooooo very looooose! It makes him very hard to hold on to. I was trying to hold on to him yesterday during
DS8's b'day party, and it was like trying to hold onto 20 lbs of wet spaghetti. After a couple of minutes I had to put him down. Not only is it very tiring and uncomfortable, but I worry about safety, because it is going to be nearly impossible to hold onto him for 30 minutes waiting in a line. And the thought of holding onto him on the bus--especially if we end up standing (I was so surprised last trip how grown, apparently healthy men can completely avoid making eye contact with a woman standing on a bus with a small child).

To make matters worse, my DM will probably be bringing DS back to the hotel midday for naps, and she has a worse time holding onto him than I do. Even once he starts walking, he's so tiny that it makes it really hard to stoop down to hold onto his hand, and I worry about dislocating his arm if he tries to bolt [oh, that could never happen you say? Only to me--I disclocated DD12s arm back when she was 3, at the State Fair of Texas. I was holding on to her hand and she tried to bolt, and I didn't let go. Pulled her elbow right out of the socket. The State Fair staff had us transported by ambulance to the hospital, because she was screaming and it would have taken us a half hour to get back to our car, and we spent the next few hours in the Baylor Hospital emergency room. Ruined the day, she was in soo much pain until about 20 minutes after they popped it back in, and I felt like the 1st prize winner for Bad Mommy of the Year!

I would feel so much better w/ the wheelchair stroller so that we could fasten him down on the bus, but because he doesn't need it in our day-to-day lives, I really can't justify putting out the money for it. A wheelchair company in Orlando gave me the # of a company that may rent the wheelchair strollers, which would be great!

 

[RACHELSMOM1]

My DS1 (oohh--almost 2, in another month!) w/ Down syndrome doesn't (so far) have any other health issues.

My main worry about our trip [which is still 10 months away] is the "carrying factor." His ligaments and joints are sooooo very looooose! It makes him very hard to hold on to. I was trying to hold on to him yesterday during
DS8's b'day party, and it was like trying to hold onto 20 lbs of wet spaghetti. After a couple of minutes I had to put him down. Not only is it very tiring and uncomfortable, but I worry about safety, because it is going to be nearly impossible to hold onto him for 30 minutes waiting in a line. And the thought of holding onto him on the bus--especially if we end up standing (I was so surprised last trip how grown, apparently healthy men can completely avoid making eye contact with a woman standing on a bus with a small child).

To make matters worse, my DM will probably be bringing DS back to the hotel midday for naps, and she has a worse time holding onto him than I do. Even once he starts walking, he's so tiny that it makes it really hard to stoop down to hold onto his hand, and I worry about dislocating his arm if he tries to bolt [oh, that could never happen you say? Only to me--I disclocated DD12s arm back when she was 3, at the State Fair of Texas. I was holding on to her hand and she tried to bolt, and I didn't let go. Pulled her elbow right out of the socket. The State Fair staff had us transported by ambulance to the hospital, because she was screaming and it would have taken us a half hour to get back to our car, and we spent the next few hours in the Baylor Hospital emergency room. Ruined the day, she was in soo much pain until about 20 minutes after they popped it back in, and I felt like the 1st prize winner for Bad Mommy of the Year!

I would feel so much better w/ the wheelchair stroller so that we could fasten him down on the bus, but because he doesn't need it in our day-to-day lives, I really can't justify putting out the money for it. A wheelchair company in Orlando gave me the # of a company that may rent the wheelchair strollers, which would be great!

Hi, I have talked with you on these boards before. Last December we had the same experience on the busses with the people, even men, refusing to acknowledge the presence of a woman holding a disable child , and that is when we started our process of ordering our wheelchair/stroller. The insurance issue may not have worked out for you to help fund the purchase , and the wheelchair/strollers can be quite pricey, I know . The MacLaren Special Needs stroller is under 600.00, I believe. If you contact your insurance company thru your physical therapist you may be able to get funding for a Convaid chair . The wheelchair/strollers are not made to last a short time, rather they are made to fit your child for many years. ... Rachel rides on hers on the bus at WDW but we also use it everyday when we go places. It is a wonderful thing!!!