Autism, Strollers and 1st time to Disney

[tacomaranch]

Hi,

We are going for the first time to Disney on 4/29. Our DS who is 3 yr. old is autistic, runs without fear and is very fast! He is usaully good when we are out our home but this is big.

Do they have strollers for rent that will fit a very small 3 yr old? Should we bring out umbrella stroller? Should we bring the larger Graco stroller?

Will we be judged if we attach our retractable dog leash to his waist belt? I know it sounds crazy but he is just so fast that once he gets going I don't know if I can get him with all the people. It is for his safety. He could just run into something or someone and get hurt.

Should we get a card so that he doesn't have to wait in line? I hate to think of the screaming. We also don't want to not wait our turn but with Hunter, he has no concept of wait yet.

We are so happy to be going to Disney. It is our first trip with Hunter and it involves a long flight and a new place to stay. We were upgraded to OKW with a 1 br suite. We have 3 days to play or have the most expensive swimming trip ever.

Thanks for any support, April

 

[KathyRN137]

My autistic DS is 8 yrs old; our 1st WDW vacation was when he was five and we have been back every year since!! He was a bit large for a stroller at 5 yrs, but each park has strollers that should fit your needs. If you plan to ride the WDW buses, I heartily recommend that you leave your own stroller at the resort...the buses can get very crowded and we saw so many families struggling with stroller, backpack, diaper bag, trying to hold kids' hands, etc. It just seems plain easier to rent!

If you think you will be safer using the child "leash", go ahead. I've learned by now to care less about what other people are thinking and only about what's good for my family (we have a DD,10 yrs, who is "normal").

The GAC (Guest Assistance Card) is a real blessing, but, you are mistaken if you think it will allow your group to go to the head of every line!! The GAC allows your group to use the Fastpass queue for Fastpass attractions without getting individual Fastpasses throughout the day. Your family will have a shorter wait, but a wait nonetheless. There is no special accommodation for non-Fastpass attractions, so you will have to check the posted wait time and decide if Hunter can handle it. The GAC also comes in handy for shows; allowing you to sit in the "handicapped section" if you so desire. Again, you can decide based upon the estimated wait time. Just don't wait too long, though, the handicapped sections fill up fast. We really only needed it for the nighttime spectaculars such as Fantasmic! at MGM.
You will need a note from your son's MD. Present it to Guest Services at the 1st theme park you visit and it will be good for your entire stay.

If you have time, pick up an excellent new guidebook, "Passprter's WDW for your Special Needs", by Deb Wills and Debra Martin Koma. I got mine from Barnes & Noble. It has a whole chapter devoted to ASD.

You're all going to have SUCH a great time!!!

 

[tacomaranch]

Dear Kathy,

Thanks so much for the advice. I am still extremely new to this so I don't know what to expect. We are just trying to find things that work for us. The leash was just something we thought would help and it will keep him safe and that is what is most important. He is so darn fast it is scary.

Because I am new I spend too much time crying right now and we have been asked not to go to the post office since Hunter likes to move the metal door in and out. A lady told me to make him behave and at the time I didn't know why he didn't understand. So it sticks with me.

We leave in just under two weeks and are hoping for the best! I have our letter with the diagnosis and recommendations. I also have a referral letter from the ped. Should I just bring everything?

Hunter loves speed, movement and high sensory issues so we pray he likes this. He can ski faster than me and loves to get rides on DD RMK 800 long track. He is just a thrill seeker. I guess it goes with the sensory issues.

Wish us luck, I think we will just rent the strollers if we can.

Thanks for the great ideas! April

 

[Grace&Carolinesmom]

Hi April

We are going to WDW for our first trip on May 1. I would suggest bringing your own stroller if your DS likes to ride in one. I just bought a MacLaren Triumph umbrella stroller for our upcoming trip for our DD(5) who is autistic and has a mild muscular disease that makes her get tired easily. It will be much easier to get around at the airport and the resort grounds with a stroller. If your DS likes to "run away" you will have the peace of mind to know that he is strapped in when you are busy checking luggage, fumbling for tickets, itenerary, etc.

Hope you have a great trip

 

[KathyRN137]

You're welcome, April! Don't feel bad about the crying part...it's been 5 yrs since my son's diagnosis and I still cry sometimes (but not so often, now). WDW is SO GREAT to autistic families. I wrote a 3 pg letter to them after our 1st trip because it was so incredible Do you have any other questions??

My kids and WDW...my favorite topics!!!!!

Kathy

 

[SueM in MN]

I have our letter with the diagnosis and recommendations. I also have a referral letter from the ped. Should I just bring everything?

If you go to the disABILITIES FAQs thread near the top of this board, you will find one of the posts on that thread is about Guest Assistance Cards (GACs).
You don't need a doctor's letter and the CM (Cast Member) will probably not even want to look at it. That said, some people feel more confident asking for a GAC if they hae a letter - especially for invisible disabilities. One of the things people have reported they find helpful is to have a GAC that allows a stroller to be used as a wheelchair. That means you can bring the stroller into lines and attractions with you.

The strollers for rent in the parks are a firm plastic at AK, MK and Epcot. The ones at the Studio are jogging strollers.
This is a picture of the MK strollers from allearsnet.com.

If the picture doesn't work, go to www.allearsnet.com and search for strollers.

Many kids with ASD like the WDW strollers. The firm plastic and solid sides of the strollers seem to be calming for many kids. You may find that the park strollers are good for while you are in the parks, but having your own at your resort and at the airport would also be helpful. You could bring the stroller along, but leave it at the resort and rent one in the parks or just in some parks.

If you do a search of this board, you will find a lot of posts about autism. One of the hints people often give is to use the monorail to get away from the parks for a break; it's also a favorite ride for a lot of kids with ASD.

We are members of DVC and OKW is my home resort. It is a wonderful resort - very quiet and calming. The bus service is good and you will seldom have full buses. Here's a link to the DIS board page about OKW.

 

[Nik's Mom]

Hi April!
Hi! I have a 6 year old autistic ds and a 3 year old ds with Sensory issues. We've been to wdw several times. I definitely recommend the strollers at wdw. It has been my sons "safety zone" when the parks get too crazy for them. I also recommend that you get to the parks early. We get there about 15-30 minutes before the gate open so we can get a jump on the crowds. Also, get a GAC to assist when your ds is having a bad day.

We always go back to the hotel about noon to allow for some relaxing time for the kids. This really helps to prevent meltdowns. Do you use PECS cards with your ds? These are basically cards used to keep the kids on schedule. You want to prepare your ds for what will be happening on the trip.

As for long flights, it's a 5 hour flight to Florida for us. We use a portable dvd player and some of the kids favorite movies to keep them entertained. Also, if your ds has some comfort items that he must have, make sure you bring those along.

Now, let me share with you some disney magic from our last trip. Our autistic ds was extremely attached to a rope. He carried it everywhere with him. Of course, he took it to WDW. When we were exiting MGM Studios, ds handed the rope to dh to hold for a minute. DH placed it on top of the stroller. Somehow it must have fallen off. By the time we realized it, we were on our way back to the hotel. DS had the melt down to end all melt downs. It was terrible. He cried like you wouldn't believe. We carried ds through the AKL lobby, him crying about losing is rope. Then I started to cry because I could see that he was heart broken. He cried himself to sleep that night. Next morning, we head to the park. We kept trying to find another toy to take the place of his beloved rope. Nothing worked.

So we returned to the hotel, only to find a brand new rope on the bed. DS's face lit up! I can only guess that some sympathetic cm must have overheard us and placed a rope in our room. Or maybe it was som odd coincidence. But in my eyes, it will always be WDW magic.

April, have a fantastic trip! Report back when you get home!

 

[SueM in MN]

So we returned to the hotel, only to find a brand new rope on the bed. DS's face lit up! I can only guess that some sympathetic cm must have overheard us and placed a rope in our room. Or maybe it was som odd coincidence. But in my eyes, it will always be WDW magic.

April, have a fantastic trip! Report back when you get home!

What a GREAT story.
I remember you were worried before you left about what difficulties you might run into with the rope (getting thru security, etc.)
I didn't realize the rope had actually gotten lost and a replacement rope showed up!

 

[tacomaranch]

I am running off to Sign language class right now but I wanted to say thanks for the stroller picture. It seems like a great thing to use along with a "leash". I will attach a ballon so we know it is ours and Hunter will like it. Maybe we will try the hand on to the rope and see if he can do it for Disney. I am so afraid he is going to run.

I must get to class, will be back.

Thanks so much, April

 

[1stluvispooh]

If you think you will be safer using the child "leash", go ahead. I've learned by now to care less about what other people are thinking and only about what's good for my family (we have a DD,10 yrs, who is "normal").

Amen sister

April don't let what other people's perseption of your son bring you down. My DD 5 was the same way. I was told only to bring her to the gym nursery between 1&2 because she liked to stay in her stroller and it "bothered" the other mothers who were dropping off or picking up! Things maybe hard right now but things do get better. Have fun. Rember Disney is the happiest place on earth!

 

[SueM in MN]

If you think you will be safer using the child "leash", go ahead. I've learned by now to care less about what other people are thinking and only about what's good for my family (we have a DD,10 yrs, who is "normal").

Amen sister

You will also not be the only parent using one of those child "leashes". Plenty of parents whose children don't have autism also use them.

 

[dj2]

i used a "leash" at wdw for DD when she was 18 mos. old (she's 10 now). we didn't use it all the time, but as needed. it was a special product sold for that purpose. we'd brought one for DD4 with us, too. DDs didn't have any special needs, we just didn't want to lose them.

no one looked funny at us, but then again, i'm sure i didn't waste any of my time looking at people's faces to see if they approved or not.

you do have to keep the length rather short at times when it's crowded (shorter in MK than some parts EPCOT, etc.), so other people don't get tripped up in it.
-dj

 

[winniethepoohsmom]

My 14 year old son is autistic and we've been through it all. You need to do what's best for your family and your sanity. I would definetly get a guest assistance pass, without it we could not do a trip to disney. I agree bringing a stroller from home is great for getting around the hotel, your room can sometimes be far from the main pool and the restaurants. It would also make it easier to get your food at the food court and not have to worry wear he is every second. You may also want to walk around at Downtown Disney or the Boardwalk for a relaxing stroll. Try not to overload yourself with seeing and doing everything, it's exhausting and disney is'nt going anywhere. One of the things that always works best for us is to take a mid-day break and go swimming. Sometimes too many hours in the park can become overstimulating for our special kids. I would recommend bringing snacks, drinks, books, toys, music with headphones if he likes that and anything else that may interest him and a magazine for yourself in case he surprises you and sits nice for a few minutes. I hope you have a great time, we went the last week of April last year and the weather was the best we ever had in florida, I would love to go at the time of year again!!

 

[tacomaranch]

I guess this is the most friendly and helpful board I have seen. Who would have thought on Disney! But why not, it is a place of dreams come true.

I am having a very bad day today. I need to get Hunter PECS software and I don't want to buy it because it is sooo expensive and I only need to get the pictures and print them out. I called the early learning center, 5 miles from my house and asked if I could come up and use theirs. NO! I chose not to send Hunter to their school because it was only 2.5 hours a week of daycare and I wanted more for him, so no, I can't use the software. They recvd 7K dollars in funding for having Hunter on the list but I can't use it. Back to the crying all the time. Still no software for his home based ABA program which I also have to pay for. Again, just a bad day! I have called everyone who I can think of but no answer to my questions.

We were in a very bad accident with our new minivan on Dec. 8th in which I hit a bull moose while going 60 miles an hour. It was at 6:45 am and very dark, I never say it. Then on Dec. 21st, we see in black and white that the professionals say Hunter is autistic, and he is. Then on Jan. 6th I get laid off because I can't remember what I did the day before. It has been a difficult 5 months and I wonder why God has such a sick sense of humor.

I am tired, I cry too much. I live in the middle of nowhere. If you have a problem the LDS church will solve it in my town. But I am not LDS!

I want an ABA Program for Hunter but there are none in the entire state of Wyoming. I have found a Dr. in Logan at USU who will be a consultant, I have hired a grad student of his who is in charge of the school district special ed program, both I have to pay. I have hired two college student to work for the summer and help do the ABA. We were given a huge waiver by the State but they cover ABA.

I am sorry I am on a rant but again, it is just a bad day. I am new to this thing I call my waking walking nightmare.

Hunter is a great, wonderful, active, smart, loving and beautiful child. I want only the best for him.

For now just going to Disney will be what I can today.

Thanks for the support, April

 

[KathyRN137]

April,

You will find that there are a lot of families with autistic kids that love to vacation at WDW! They have done a wonderful job educating CMs (WDW employees are called "cast members") about autism and other "non-apparant" disabilities. I always feel very comfortable talking with CMs about my son's particular needs because they are so good about it. You are still in shock right now, and probably feel that Hunter will "stick out like a sore thumb" at WDW....but that will not be the case! Because WDW has such an inclusive atmosphere, it is very popular with special needs travelers. You couldn't find a more accommodating place....it really is MAGICAL!!

You didn't mention if you were staying "on-site" or "off-site". Staying at a WDW resort has lots of advantages for those of us vacationing with an autistic child. Where are you staying?

Kathy

 

[tacomaranch]

Hi Kathy,

We are staying at the Old Key West. We were blessed to be part of the upgrade for free. We have a 1 br suite. We arrive on the 4/29 and leave on the 5/3. It is fast but we have just a short time as two days are spent flying. It is a long way from Wyoming to Florida, but we are so in need of getting out of this little town.

I pray that our dreams come true and for a few short days we can forget the battles, the fights, the IEP's, and just be a family for a bit. Just "normal". I want to just enjoy being with Hunter and my husband. I hope Disney can bring us together without all the problems. Just for a bit.

April

 

[catherine1944]

April,I`m new here also.I just sent some links to your e-mail address I hope you don`t mind.They are some printable PECS sites and Autism cards you may want to print out for WDW.I`m grandmother of 12 yo non-verbal autistic grandson.When I tried to post the URL`s as a reply the message said I had to have a certain number of post before I could send URL`S so thats why I sent them to your e-mail.More soon. liz DW bound in May

 

[catherine1944]

There is also a wonderful Yahoo group all about DW and DL. I have learned so much there.But I can`t post URL`s yet.I`m still trying to learn just how to use the forum,Anyway maybe you can look up the group its themouseforless a yahoo group. liz

 

[SueM in MN]

There is also a wonderful Yahoo group all about DW and DL. I have learned so much there.But I can`t post URL`s yet.I`m still trying to learn just how to use the forum,Anyway maybe you can look up the group its themouseforless a yahoo group. liz

If you haven something you want to post a url for, I think you can send me a PM (Private Message) with the urls in. I could post them for you.
To send a PM to me, just click on my name and you should get a list of options, one of which is sending a PM.

This yahoo site is called PACT (Promoting Augmentative Communication Together) . They talk about everything from low tech (PECS) to high tech (computerized communication systems). There are quite a variety of people posting; professionals to parents of children with lots of different types of disabilities. I know in the past some people have posted links to free resources.

 

[KathyRN137]

Hi, April!

What a coincidence! We will be staying at OKW this November! It will be our 1st time at OKW, but we have stayed in the 1BR vacation home at another DVC resort and they are awesome!! Having a full kitchen is great, esp, if your son has a special diet, or is very rigid with his food selections the way mine is! We always eat a quick breakfast in our room, never in the theme park or at the food court, because it wastes valuable early morning touring time. You get much shorter lines during the 1st hour of the park...on our 1st visit in '03 we saw ALL OF FANTASYLAND in MK in 1 hour!!

Definitely take advantage of Extra Magic Hours in the parks (esp. the early EMHs). We tour until lunch, eat, then go back to the resort for a nap (the WHOLE family!). Believe me, you'll need it! Does Hunter like deep pressure? He'll LOVE the whirlpool tub in the room .

I was thrilled to have the washer/dryer in the room, too! We only had to pack half the clothes we would normally pack because it was so convenient to throw clothes in the wash while we were resting midday.

Another thing you can do to lighten your suitcases is to mail yourself a package (UPS) to OKW prior to your arrival. We send pull-ups, baby wipes, dry cereal, snacks, small packets of laundry soap, etc. You can ether pick up perishables such as milk and fruit on your way in from the airport (cheaper), or pick them up at the resort(more convenient).

The patio/balcony door locks, but we bring a string of bells and wrap them around the door handle so we can tell if he is trying to open the door. Bring nightlights. If you think you may need little childproofing gadgets such as outlet covers or cabinet locks, bring them along,too! It really is a home-away-from-home resort!

I thing OKW will be a perfect resort for our kids because it has a quiet, relaxed atmosphere, much like Saratoga Springs Resort where we stayed last year. I am so looking forward to it!