Just back- GAC!-Autism related

[SueM in MN]

We were at wdw in January and were first time users of the GAC. My 4 yr old son has luekemia and was on ALOT of chemo at the time. They gave him 2 weeks off and we went to WDW . Our GAC was to use his stroller as a wheelchair. We expected to push the stroller through the lines but most times we were told to go through the wheelchair line. Almost all of the CM's were excellent. I won't mention the one old man CM at Indiana Jones that argued with me about my son's cancer or another one who questioned us using a stroller as a wheelchair even though the pass and the big red sticker on the stroller said so. I felt guilty using it because he CAN walk he just can't stand or walk for more than 20 ft at the time. You should have seen some of the looks we got as he got out of the stroller on his own and onto the rides. It was awkward to me but I knew in my heart that if those people knew what my son had and was currently enduring they would push him to the wheelchair line theirselves. At the end of the day I felt we did the right thing utilizing the GAC otherwise we never would have had such a great time (he wouldn't have lasted 2 hours). He still talks about it daily and is making his wish soon to go see Shamu and go to Disney. sorry I rambled.

I just wanted to point out that for most attractions there are no 'wheelchair lines'. Most of the lines are designed so that wheelchairs can go thru the regular lines with everyone else.
A few attractions do have a wheelchair line or exit, but those are almost always ones where the regular line or entrance has something that makes it not accessible, like stairs or a turnstile.

 

[katdocnorf]

I am glad to see this post also. I did not read everybody's responses for lack of time, but here is my story. I have a couple actually.

I remarried about 3 years ago and my husband has an autistic son now 19 almost 20 years old. He also has underlying other diabilities but they can not determine those because his autism is so severe that it off shoots the others. Anyway, they had never been to Disney before, and I love Disney of course.

First Trip -- Was actually on Cruise. Disney Magic on Eastern Carribean. I let the CM at desk at check in aware that our son is Autistic and sometimes he gets load and likes to also jump when he gets excited. I just wanted them to know as it may disturb other guests and just so they could make them aware in case they get complaints or calls. Low and behold one night, he was very excited after a fun filled day and was on the veranda jumping. I guess a neighbor must have complained and we had security at the door. He seemed semi-rude. I am not going to say rude because it was severe. Just kind of was acting like 'yeah right' type of attitude. I went to front desk and complained and also explained that I had told CM at check in the circumstances. This CM said it wasn't in computer, etc. and she apologized. So I guess even the first CM didn't care or what have you. They gave us some Shipboard credit for the hassle but still. And also I can agree that they need something for the ship for this also. We were waiting in one of the areas set up for excursions and because of asking you to be there so early we had to wait a while before leaving this holding area to go on the excursion. Well son got into total melt down having to wait 45 min - hour and also waiting in line to board.

Next Trip -- I did not even think to say anything at the gate to get special entry. I probably should have but I always thought that should be for WheelChair people. But actually a couple of times I sure did need it. Same circumstances, he gets kind of anxious and upset at crowds and sometimes total melt down. That only happened a couple of times though. Most of the time he was just happy to be is Disney....just as others stated though, with autism some days are good, some are not, and sometimes the situation causes them to melt down and sometimes it doesn't. I would prefer to have it just in case though. But we are going back in August, which will be a lot more crowded then last visit. So I may have to inquire on getting it, just in case of the TOTAL MELT DOWN.

THANKS FOR THIS THREAD..... They should keep a special thread for Autism. And I can fully understand about abusing the passes. I see stuff like that everyday and it is just sad that people abuse things which makes it difficult on the people that actually need the services.

 

[SueM in MN]

THANKS FOR THIS THREAD..... They should keep a special thread for Autism. And I can fully understand about abusing the passes. I see stuff like that everyday and it is just sad that people abuse things which makes it difficult on the people that actually need the services.

I'm glad you have found this thread helpful.
And I wanted to point out that once a thread is on here, it doesn't go away.
I just might not be on the top pages where you can see it.
Threads stay at the top because they are active (ie people are posting on them).
You will find links in the disABILITIES FAQs thread to some of the threads that people have said were helpful in the past. That makes them easier to find than having to search for them. As time permits, I add more information to that thread and I do plan to revamp the FAQs thread. But since all the moderators are volunteers, sometimes time does not permit us to do all the nice things we want to add because we are too busy moderating or are too busy in our personal lives.

 

[katdocnorf]

I'm glad you have found this thread helpful.
And I wanted to point out that once a thread is on here, it doesn't go away.
I just might not be on the top pages where you can see it.
Threads stay at the top because they are active (ie people are posting on them).
You will find links in the disABILITIES FAQs thread to some of the threads that people have said were helpful in the past. That makes them easier to find than having to search for them. As time permits, I add more information to that thread and I do plan to revamp the FAQs thread. But since all the moderators are volunteers, sometimes time does not permit us to do all the nice things we want to add because we are too busy moderating or are too busy in our personal lives.

Oh believe me I know you guys stay busy. And we all on the boards appreciate what you do. And I didn't really mean thread, I mean Forum. Autism just keeps growing and unless someone has first hand experiences with someone with autism, they just don't comprehend. Like even going out to a restaurant sometimes as a family. Most people see how lovable DSS is and just eat it up, but some sit and star or make off handed comments. One time someone in WalMart made a crude remark and my DH barely heard it but DSS heard and actually understood and then DSS turned around and got in the person's face and made some comments of his own that he had picked up from a movie that I guess he felt suited the situation. I wont repeat them, but then that persons husband came over and said you need to control him and DH told him "my son isn't going to make comment like that unless he is provoked."

Anyway I am kind of rambling.. But a forum on Autism would be helpful for parents to vent and tell of issues and helpful things for the parks and other travels/situations.

I will try to keep this thread going and BUMP whenever possible myself. AGAIN THANKS MUCH FOR ALL THAT YOU DO..

 

[Cheshire Figment]

But a forum on Autism would be helpful for parents to vent and tell of issues and helpful things for the parks and other travels/situations.

I will try to keep this thread going and BUMP whenever possible myself.

In effect we do already have such a forum, it is the "disABILTIES Community Board" which is a subforum of this one. One of the purposes is to allow people to vent about disability-related problems.

And we prefer that people not "bump" threads that have been dying just to keep them at the top.

 

[SueM in MN]

I just wanted to point out one thing about bumping threads. It is OK if you have something to add to an old thread (or in the case of an old, old one I bumped about boarding rides, it is something that has a lot of general useful information).

One of the things that we have seen in the past that cause problems is people posting just to bump something up to the first page every time it ends up on the second or third page.

One of the other problems happens because of the little 'related threads' box that comes up when you read a thread.
People assume that those come up because they are recent, but sometimes those are years old. So we end up with people giving hints to an original poster who finished their trip more than a year ago. Some of the advice is very good and some of the posters are obviously very concerned about the OP, but don't realize it's an outdated thread. Sometimes those go on for several more pages before anyone realizes that it was a thread from 2004!
So, if you do see one of those, check the date of the first post. You will need to open the thread to check that. The date in the 'related threads' box is the last post to the thread, not the starting date.

Thanks

 

[DisneyDreams4P&B]

Sue,

I was wondering if we could start a new thread, dedicated to Autism Apectrum Disorders and WDW. I would love to gather ideas, tips, etc. on everything from the parks to the best hotels/rooms to stay in for ASD families. What I would really like to do is gather as much info as I can and then put together in a easy to read .pdf or word doc, that could easily be emailed to parents planning a trip. That way, they can easily find the info they are looking for (threads can get very long)

What do you think?

 

[Selket]

Allearsnet.com keeps a great FAQ for type 1 diabetes (thanks to Zurg - the badshoes here at Dis) and there is a FAQ there and other pages WDW planning for those with ASD: http://www.allearsnet.com/pl/dis_aut.htm There are also some other special needs issues dealt with in their FAQ's.

FYI

 

[SueM in MN]

allears does have a nice page about autism.
One thing that is nice about a thread is that things can be added easily, but that also leads to a bad thing - the helpful threads keep getting stuff added and all of a sudden they are too long to be helpful.

I think extrapolating out some of the information from threads is a good idea (that's kind of what the FAQs thread is). If people come up with a set of information that you want me to add to the FAQs, I am willing to put people's suggestions together and add it there - if you have more you would like to make available by email, I can add that as a contact in the FAQs entry.
You can email it to me as a word or pdf document.

 

[katdocnorf]

That sounds great...

 

[nikki1978]

my family just got back from WDW. Our son has epilepsy so we talked to his dr fearing he would not be able to ride any rides luckily that was not a problem but his dr. did suggest we bring a letter he wrote. we end up getting a GAC and what a life saver the heat was killer on our son but we were in shaded aqnd did not wait long for most rides woderful trip and a dream come true for our son it was a rough few months he was only dianoised with epilepsy in late FEb. lots of test lot of dr.disney is great at making a kid or a mom forget the and just have fun

 

[5dwarves]

Nikki - Glad to hear doctor Disney helped your family releive some fo the pressure that comes with a childhood illness. Hope all goes well for your son and your family!

 

[SueM in MN]

my family just got back from WDW. Our son has epilepsy so we talked to his dr fearing he would not be able to ride any rides luckily that was not a problem but his dr. did suggest we bring a letter he wrote. we end up getting a GAC and what a life saver the heat was killer on our son but we were in shaded aqnd did not wait long for most rides woderful trip and a dream come true for our son it was a rough few months he was only dianoised with epilepsy in late FEb. lots of test lot of dr.disney is great at making a kid or a mom forget the and just have fun

I just want to clarify for other readers that a letter is not necessary to get a GAC. Many people do bring one because it makes them feel more secure about asking for the accomodations/assistance they need. But, being to explain your problems is much more important.

 

[crazy_for_the_dis]

Nikki 1978, I'm in a similiar situation. My daughter was diagnosed with epilepsy in November, and I don't know if I should be worried about it for our upcoming trip. Technically, she is not clinically diagnosed since she only had one seizure (you need to have two to be clinically diagnosed I guess), but based on her EEG's, her neurologist explained it was not a matter of if she would have more, but when. So she started medication. Since she has been seizure free since then, other than remembering her medication every morning and night, it hasn't really had an impact on our lives, just something that is always worrying me in the back of my mind.

Her neurologist said the same thing at our last appointment to us, stay hydrated and out of the sun, etc. Has your son experienced more seizures since his diagnosis? I read sun exposure can be at trigger for epilepsy, but really I took the doctor's words as general advice for anyone going to Florida in August. Does the sun affect your DS because of his meds or condition?

 

[SueM in MN]

If you check out the disABILITIES FAQs thread near the top of the thread list for this board, there are some links to past threads that should be helpful to you in the post about links (post 3).

My youngest DD has had epilepsy for many years and has had some seizures at WDW. The biggest issues for most people with seizures are change in schedule (including not keeping the same medication schedule), getting overtired and dehydration. Sun exposure might be important to avoid because of medications or because it is another factor that leads to dehydration. All of these things lower the seizure threshold, which means it's easier for a seizure to occur.

My DD usually has one seizure during each WDW trip. Since she is in a wheelchair, we usually just tip it backwards and sit in the shade so she can rest. You can also go to First Aid in any of the parks. They are cool, dim and quiet and have cots in individual little cubicles where people can rest. We have used them when we were close enough to First Aid and found them to be great.

 

[crazy_for_the_dis]

Thanks Sue. Prior to my DD's first and so far only seizure, her father gave her cold medicine, one on the list my neurologist gave me listed as "never give" to someone with a seizure disorder. But, at that time, we didn't know she had the disorder. Up to then, she had been a very healthy child. So, her neurologist still believes she had the seizure because her threshold was lowered due to the cold medicine.

We have gone to WDW before this all happened, and would open the parks and stay out on E-nights (how I miss E-nights!!) till 2 am. Her meds do make her tired (more so during the school year though) and cranky at times, or it could be adolescence, not quite sure. Again, we have not changed hers or our lifestyles because of the epilepsy. I think we put too much faith in the medication to keep her seizure free. I think on this trip we will maybe have to take it a little slower. I don't want to lower her threshold and risk experiencing a seizure at WDW if we don't have to. Thanks for the advice!

 

[debbiemomto4]

We just went through all the testing on my oldest dd who's 16. Her EEG came in as normal. She did have one seizure recently. They decided they needed to play it safe and tested her for a seizure disorder just in case.
She ended up having Hashimoto disease and now we are waiting for more blood test results. I am still worried since she hasn't started medication yet since she hasn't seen the endocrinologist. Her appointment is in August and we are going to Disney on 7/24. Not sure how she will hold up. I guess we'll see!

 

[atinkerbellmom]

Hi I am new to the dis"abilities" part of the board. I have read them from time to time, but wondered if the threads applied to us. I am a DM of a 9 year old DS with ASD and a 5 yr old DD with severe food allergies. When I have read the threads in the past, I did not see a lot. I finally joined the DCL board and have been living there for for a little time. Now that I see this thread, I will join you as well. Do not know what good I will be for you, here unless you have DCL questions. We have not done DW for some time because of our son, the obsessions to ride the same rides and the fact he melts down in line. Last time, we did get a guest assst. card, but always got pointed to the fast pass lane and did not think we had a right to go to the others without a FP lane. We also had a MAJOR meltdown to get on the bus at MK when the line was so long for the resort. Always have been afraid of others not understanding, due to our DX. As you say, our kids "look fine" and I am scared of people thinking I'm a Bad Parent.

 

[Christine43]

Tinkerbellmom, I would rethink this. Each ride has their own way of redirecting people with the GAC. Whether it's another entrance, or whatever, even if it is the FP lane, you have the right to go that way because you have a child with a disability and Disney says you can and they're the only ones who's opinion matters. If people do see you, they will probably just assume you're supposed to be in that line and if they don't, who cares? The only way Perry will see all of WDW is with that GAC and I don't consider it a privilege as much as a necessity that I desperately wish I didn't need. Don't let anyone else's uninformed comments or looks keep your family away, lives with family members w/any dx is far more complicated and heartbreaking than "normal" families and if this is what is takes to make this a happy vacation, I think it's terrific that Disney does this for us!! You're a great mom, don't let others rattle you.

 

[Piper]

Hi I am new to the dis"abilities" part of the board. I have read them from time to time, but wondered if the threads applied to us. I am a DM of a 9 year old DS with ASD and a 5 yr old DD with severe food allergies. When I have read the threads in the past, I did not see a lot. I finally joined the DCL board and have been living there for for a little time. Now that I see this thread, I will join you as well. Do not know what good I will be for you, here unless you have DCL questions. We have not done DW for some time because of our son, the obsessions to ride the same rides and the fact he melts down in line. Last time, we did get a guest assst. card, but always got pointed to the fast pass lane and did not think we had a right to go to the others without a FP lane. We also had a MAJOR meltdown to get on the bus at MK when the line was so long for the resort. Always have been afraid of others not understanding, due to our DX. As you say, our kids "look fine" and I am scared of people thinking I'm a Bad Parent.

Don't worry about what others think--you will never see these people again--their opinion of you doesn't matter in the grand scheme of things. Your doing what you need to do (withing the parameters of what Disney offers) to make the vacation the best one possible for your family is what matters!