Autistic grandchild

[SadieQ12]

Our family will be visiting WDW in January and my 5 yr. old grandson is autistic. He talks, but not well enough to help if he should get lost. He also can disappear in a second. I need tips from other autistic parents and grandparents of how to help him get the most from his visit. We have considered leashes but I think he would really balk at that. We have also considered - in case he gets away from us - a medical ID bracelet that identifies him as autistic and has his father's or my cell phone # on it. Hand holding will work for him for a limited time. Any suggestions, ideas or tips would be most appreciated.

 

[BethanyF]

The medical bracelet idea is great.
You should also consider renting (or bringing) a stroller. It will be a good 'safe' place for him...it is somewhere to get away from the people and activity plus its nice to have somewhere to put all your stuff Not to mention there is a lot of walking involved.
On our last trip my son was almost 6 and he loved having a stroller to kick back in if his feet and legs got tired.

 

[dbal]

I would do the above mentioned things as well as have someone designated to watch him at ALL times. It is so easy to get distracted on vacation. It might make it easier if all the adults had a game plan on who is his "buddy" for the day or some similar type of plan. Good luck and I'm sure you all will have a blast!
Deb

 

[AJKMOM]

My autistic son hated wearing a bracelet. I pinned his name,diagnosis, our names and where we were staying (before cell phones were so popular), on the back of his shirt in case he got away, and he did, several times. The good thing about WDW is that there is so much to capture a kids attention, so they don't go so far. If I were you, I might try taking a hand-holder (leash) for the times he isn't in a stroller. He may forget it's there if he is looking at something like a giant Mickey or Donald Duck. The CM's are especially trained to help look for lost kids.

 

[SueM in MN]

Welcome to disABILITIES.
This website has a lot of specific hints for travel to WDW with someone with autism.
As was already mentioned, there areother ways besides a bracelet to put identification on him if he won't wear a bracelet. Some of the things they make for joggers, like a small pocket that attaches to the front of the shoes or even putting the tag from a bracelet onto his shoes by threading shoe laces thru it before tieing may work.
Another suggestion I saw for people with digital cameras is to take a picture of the child at the beginning of each morning. That way, if he does take off, you can eassily show the picture to the CMs so they can see who they are looking for.

 

[saymama]

several things that I have either tried myself or have gotten tips for others. I have 2 boys with autism and this May will be our third trip with both of them and their grandparents.

If you get a bracelet, get it early enough to have them wear it for a little bit everyday. That's what we did. We made a huge deal out of it and by the time we went to DW, they never took it off.

Take a pic of the child before leaving the room (digital cameras really help here). Heaven forbid something really does happen, you have exactly what they looked like that morning.

Name tags- you can bring as many sticky name tags as you like and slap one on his back every morning. Or I heard of someone printing up temp tattoos and placing them on the arm or some other place that wouldn't bother the child. One year, we got them shoe tags off the net.

I actually have a dog a collar for my oldest. The collar part fits just like a belt. The leash part can be taken off as often as needed. My oldest got very used to it.

Get a stroller. We jumped through hoops last year to get a medical stoller for my monster 4 yr old. I so wish I would have had one for my oldest as well. He has hypotonia and was so tired just from walking from the bus, that we had to rent one for him.

If I think of anything else, I'll list it as well.

 

[Teris]

My youngest daughter is autistic, and when she was 4 (ten years ago), we went on our first trip to Disney World. I purposely dressed her in clothes that were fairly unique, and very bright, which was helpful in locating her if she were to get away from us. She was good at getting away from us, particularly when it would rain, and the yellow ponchos would come out. Get a uniquely decorated poncho for your grandson should the need arise. Maybe even let him decorate one in his own fashion with stickers, or waterproof markers, to make it stand out in the crowd of ponchos.

 

[gritzel4]

I have a 6 yr old Autistic son. When we are at WDW I place a business card with my name, cell phone #, resort name and a note stating that he is autistic in his pants pocket. If I place it in the pocket prior to him getting dressed he will leave it there.

 

[Nik's Mom]

I have a 5 year old on the autistic spectrum. We have a medic alert bracelet, but he won't wear it. Try having something on him that identifies who he is and your cell #. Use a stroller where ever possible. With the GAC, it will allow you to take the stroller in lines with you. Your grandson will have a great time!

 

[SandrainNC]

My son doesn't have autism (he has Down syndrome) but we bought shoe ID tags that just velcroed to his shoes with our name, cell phone information and there was a place to write down special information. You do have to write very small though. I have heard of others getting the metal tags engraved (that you get for dogs), putting all of the information on it and attaching it to a child's shoelaces.

Also, we took a leash with us (the type I got was a fanny pack with the strap attached to it) and it lasted 30 minutes at the most because we hadn't practiced using it at home. He was dragging me all over SeaWorld!! So, my son got very good at holding our hands (and also learned if he took both of our hands and lifted his feet he could swing all over WDW!!). Have a great trip!! Sandra

 

[Nik's Mom]

SandrainNC,
Please share where you got those shoe tags. What a great idea! Did you buy them on-line or in a store?

 

[SandrainNC]

I bought them online. Here is the link.

http://shop.store.yahoo.com/kid-smartliving/whosshoeschi.html


Sandra

 

[JCTigger]

the most important thing if he does get away from you is not to loose your head and DO NOT split up your party that is the worst thing you can do like someone said cast member are trained to deal with lost kids... so the minute you know he is not with you go back to the spot you remember having him with you and flag down a CM dont wait because you think you might find him chances are a CM already has him and they can find you with another CM easier then you can find them and also alot of times kids dont know they are missing
hope that is helpful

 

[leise]

Hi there, welcome to DISabilities! My son is 5 and has autistic spectrum disorder. We've just got back from our second trip with him, and you will have a great time!
Definitely get a stroller! The Disney ones you hire in the parks are great, because they are easily big enough for a 6 year old, and they are really enclosed. They always make such a difference to our son, he loves having somewhere to retreat to when it gets a bit much. Once or twice we didn't get a stroller and he was climbing walls and running off in no time...different child with a stroller!
Second, get a GAC, and don't be afraid to use it! It will allow your grandson to experience things he may otherwise not be able to, and push back his boundaries.
On the subject of losing him, luckily this never happened to us, but just in case we had a little laminated card pinned to the back of his t-shirt (where any CM could see it if he got lost, but it didn't bother him) with his name and details (including that he was autistic and had difficulty communicating) and our contact details on.
To be honest he liked holding our hands if he was ever out of the stroller, the only really scary moments were when he was off playing in playgrounds with his brother. We had to make sure between me and my husband we'd agreed who was watching who....
This time, we found that visual timetables really helped our son get the most out of the holiday. There were so many things he wanted to do, that he really loved, that he would get a bit overwhelmed , and find it difficult to move from one thing to another. We had stopped using timetables at home cos he seemed not to bothered anymore. But when we'd been at WDW for a few days, and he started to look like there might be a meltdown, it was amazing to see the difference it made when I started his morning with some (very, very) basic stick drawings of what he would be doing that day....

 

[Nik's Mom]

Leise,
Oh, thanks for mentioning the visual timetable. We use the PECS schedules at home, and it helps so much during homework time, which used to cause major meltdowns! I never thought of bringing it with us on our trip. Thanks! I'll have to create some pictures that would apply to our trip.

 

[Carrieberry]

Wow what a helpful thread! We will be taking our 6 year old ASD son to WDW in a few weeks. We have taken him to DL in CA with the wrist leash and he tolerated it much better than I expected. He walked all day and then after a break we went back at night with the stroller. We bought a big jogger that we will be taking to WDW with us and he loves it. We looked into getting a medical stroller but since he does not have mobility issues it would have cost us way more than we could afford. We searched and searched and finally found one high enough off the ground for him so his feet would not drag. The joggers at DL were too narrow for his shoulders. We will be taking the leash again for this trip and I have printed up iron on labels to attach to his shoelaces. The are on strips of bondex , looped through is laces and then ironed together. They say he is autistic and deaf, does not speak and have our cell numbers on them. He would never wear a med alert bracelet. Before we leave I am going to wrap fleece around the wrist strap parts of the leash to make it more comfy and less irritating when he pulls me towrd something he likes (usually the gift shops!). Now if i could just think of some great ideas to keep him buisy during the 4 hour plane ride.........!

 

[Poohnatic]

I agree that the WDW strollers are great. My 8 year old son still uses the strollers-it's enclosed on three sides, so he can hide himself and cut down the excess visual stimuli.

A baseball cap also helps in cutting down the visual, as does a towel. My son normally doesn't want anything on his head, but at WDW, he'll wear his cap. In fact, a few months back, he left his hat in the stroller at MK. We were leaving and they were doing Night of Joy. He was absolutely distraught. A CM at the gate saw the situation-and was wonderful. She escorted my son and me back in to try to locate the cap-no luck. We were given a 'no strings attached' to get him another one. He was still extremely upset, as he felt that his cap was the only one to help him.

Fortunately, it turned up the next day and we got it. Any parent with a child on the spectrum can imagine what we endured for those 15 hours!

I dress my boys in Orange shirts-it started because I only seemed to find Disney store Buzz Lightyear shirts that color, but then it became a routine to buy any orange shirts. It really makes it easier to find your child in the crowd.

If your child has food preferences, packing as many of the non perishables as you can to bring with you will also help. You don't have to worry about finding this things on vacation and it creates more room for the souveniers. We went through a yogurt phase-had to have yogurt (and a particular brand) at least twice a day. As a solution to that and renting a fridge, we bought a refrigerated travel cooler.

Plan for lots of breaks. Over time, we found that after 2 or 3 days, a non park morning decompressing at the pool bought us a lot more fun time later on.

There are several internet sites that stream WDW music (IIRC, live365 is one of them). Getting him familiar with the music he'll hear may also create comfort.

In the many trips (10+) before moving to Florida, and the frequent trips since moving, I've found many CM's to be very helpful.

Good luck-I'm sure you'll have great times while at the parks!

Suzanne

 

[Carrieberry]

Wow- it is so nice to hear from other parents of children on the spectrum. They are all so different yet the same! It makes me feel so reassured. My son is a lot like your Poohnatic. He absolutely needs to have something on his head, esp. when his gets overly stimulated! I can feel for you and honstly say that I know those 15 hours without that hat must have been a nightmare! My son has a blanket. We get the oddest looks (we try not to care what others think) since he carries this thing everywhere and he is 6 but he has to have it to put over his head. He hates hats! UGH!! As far as the food goes, since all the resorts now how fridges it makes it easier. Now this trip we decided to rent points from a DVC owner and get the one bedroom at OKW. We will have a full fridge and we are trying Wegoshop.com. They will deliver specific brands to the hotel. Up to $100 is only the cost of the items on the reciept plus $15. We plan to have all his faves delivered to us so we don't have to pack a ton. He will get all his special treats since it is a vacation.


I have to mention also that he makes extraordinary progress in every area whenever we go to Disneyland in CA so we are super excited to see how he does with an entire week at WDW. He used his first sign language sign at DL and his whole dimeanor changed. Oh yeah I should mention that he is Mickey obsessed. I am even going to attempt to potty train (he already knows what he is supposed to do when he goes to the potty we are working on him being able to tell us when he NEEDS to go)him while we are there since we will be using the bathrooms every couple of hours anyway and it is a good way to teach him the PECS cards in a fun enviornment. Wish me luck!

 

[SadieQ12]

Thanks a million folks for the very good suggestions. I particularly liked the shoe ID's and have ordered 4 for all of the grandkids. We will definitely rent a stroller even though he is a big 5 yr. old. I bet his 7 Yr. old sister will occasionaly like it, too. Is there an autistic chat room or board somewhere. It helps so much to share "horror" stories, tips and polite--but to the point--comebacks. So many people just don't understand and they think they are being helpful giving you advice. Thanks again for your tips. We are all looking forward to DisneyWorld.

 

[wide awake]

I have read so many threads where people say that their ASD child made huge progress at WDW. After reading those threads, and finding out that the restaurants are excellent in handling special diets...DS is gfcf...I have decided that we HAVE to go. DS is 14, has been to DL once and on two Disney cruises, but maybe he needs the full immersion. He is sooo close to being normal...only the language...everything else has always been age appropriate. He is the master of disappearing, but not with me...I watch him too close. My DH and my sister both lose him...my sister was furious, we were at Target and I told her to watch him, I had to look closely at quite a few items...she lost him three times, and by the end of our shopping trip was in a snit...DS made her look stupid. She is a teacher and has two children and DS left her in the dust.