Need advice: Getting a GAC without emphasizing stigma

[Kitty-chan]

I just have to start by saying I am so glad there's a message board here where I can post this question!

I need some advice. DS9 has recently been diagnosed with Asperger's Syndrome, which has made all sorts of puzzling behaviors more understandable. We just found out in July, so I'm still in the process of grieving, the first stages of learning, and trying to make what small adaptations are helpful. (We're also working on various interventions/treatment options, but I really don't want to stumble into flame-war territory, so I'd rather not go into that.)

We've been on many Disney trips together, just the two of us, and are planning another in December (hip hip hooray!). We've done great together on all these trips -- I know his triggers well, and have been adapting to his particular, specific needs for years, long before we had a diagnosis for his quirkiness. (When I first got the news I thought, "I can't possibly handle parenting a disabled child!" and then realized, "wait a minute . . . I've already been doing it for nine years! Surely I can keep muddling through.")

But for the first time, I find myself wondering if I should get a GAC. Most of the time he does fine at Disney, and I'm guessing he'll continue to do fine, but as he gets older people respond differently to him (behaviors that would have been tolerated in an apparent 6-year-old aren't treated so kindly when the kid appears to be much older -- and my son is very tall for his age, so not only does he have AS, but he's commonly perceived as being 2-3 years older than he is!). As he gets older, I get more and more of the "what's wrong with you, can't you handle your own kid?" kind of looks, and he gets more and more of the "you should be acting better for someone your age" kind of treatment from strangers.

So, I'm thinking about getting a GAC, in case he has a meltdown at an inconvenient time (like, oh, in the middle of a ride, or in the middle of Main St when it's time to clear out for a parade) (well, as if any time is convenient, right?). I do a lot of things to try to manage his well-being, to keep meltdowns to a minimum, but they can't be 100% eradicated. I'm thinking that if he really melts down badly, it would be helpful to be able to show a nearby CM my GAC, and maybe they'd be able to offer a little extra assistance of one kind or another. And as it's always just the two of us on these trips, I don't have any other adult to help me if he goes off the deep end. (DH hates theme parks, but that's a topic for another thread!)

But my dilemna . . . I don't want to make a big deal of DS's AS, and make him feel like a different, "sick" child. He's not used to getting any special treatment anyway. And I'll need to take him with me to request the GAC. So . . . could those with experience tell me what the process is like of getting a GAC, and how they've handled it with their child without emphasizing the child's "outsider" status? Also, tales of the usefullness of GACs during Aspergian meltdowns would be nice to hear -- it might help me know whether it's worth it to go get the card.

(BTW, I do have a copy of his diagnosis to take with me if necessary.)

 

[riu girl]

I am in a similar situation. DD8 knows that she has "behavioural/attention challenges" and we work together to deal with them. At this point I have never told her of her true diagnosis (mild ADHD, highly elevated anxiety , with some sensory and ASD tendencies).

At disney last year, I did not want to have her hearing about her issues being discussed with a complete stranger.
So I simply typed up a short point form note and handed it to the guest services cm and asked her to read it. At first she asked me to simply tell her the situation and I nicely asked her to read the note. She did and within two minutes we had a GAC.

Having the GAC was nice. At disney, DD did well most of the time. She is a very bright kid and she can sense when the anxiety was getting too much for her. At that time I simply left the regular/standby line and found the first cm and showed him/her the GAC. Besides anxiety I don't think she had much difficulties with adhd/sensory stuff since we brought a lot of stuff in the lines to amuse her. But I can sense when the anxiety was getting to her.

My advice: get the GAC (using a note for the cm to the read so your DS won't have to hear you talk about his issues.). And just use the GAC when/if you need it.
Suzy V

 

[Michigan]

FYI did you know there are lots of famous people with Asperger's Syndrome? Bill Gates, founder of Microsoft and billionaire, Albert Einstein possibly Issac Newton. There has even been talk by people that were close to John Lennon that he to had it.

My oldest daughter that has a spina bifida swam on a team with an adult that has Asperger's Syndrome. She has a masters in education and writes books and teaches at an online university.

I guess what I'm trying to say is find something that you child is good at and enjoys and you never know how far he can go.

 

[MommytoMJM]

I am off to celebrate my anniversary and halloween, but I will respond to this when we get back, we have similar situations with my dd4 and myself.

 

[dsmom]

Please get the GAC card and don't think twice about it! My son is seven and autistic and we get one every time. We go to city hall in the MK and it is so easy! I just hand the person behind the desk a note from my son's doctor and say I need a GAC. It only takes a minute and you are out of there. We have done this over 100 times and every time the person handing out the pass has been wonderful. The reason we go to Disney so much is because everyone there has always been so kind to my son. It is his favorite place in the world( and mine too! )

 

[taximomfor4]

it really would depend on what your son's needs are. The GAC's are pretty limited in what they can help with, but CMs can still be wonderful in helping with the occasional meltdown. The GACs really mostly help the attraction CMs direct you the correct way at attractions. It doesn't have any pull outside of an attraction. If you need help on Main St after parades, a better idea might be renting the Disney stroller. Your 9yr old might be slightly squeezed in it, but the hard back and sides would allow him to be somewhat sheltered in the mad press of people.

Going to the GS window and explaining his needs might help, if there is something you have not mentioned above but nothing you mentioned seems to have any GAC help to match, really.

Have a great trip, and keep your chin up, a diagnosis doesn't change your child...you recognized that a lot faster than I did, good job, Mom!

Beth

 

[Kitty-chan]

nothing you mentioned seems to have any GAC help to match, really.

Thank you, that's the sort of thing I wondered about after reading the types of assistance that a GAC can get you, and thinking that nothing we need is really listed. I mean, if he has a total meltdown on Main Street and I need help, I'm guessing that I'd be able to explain the nature of the emergency to the CMs with or without a GAC, and if there was anything they could do to help, they would. I mean, if you fall down and break your leg on Main Street, they're not gonna ask for a GAC before helping you!

The occasional horrendous meltdown has really been our only huge obstacle when we travel together. He's a trooper, and we've been on enough of the attractions to know what does and doesn't set off his sensory problems (don't even get me started on Stitch's Great Escape!!). And when it's a bad meltdown, it looks an awful lot like a panic attack.

Have a great trip, and keep your chin up, a diagnosis doesn't change your child...you recognized that a lot faster than I did, good job, Mom!

Thank you, that helps a lot.

 

[riu girl]

I agree with taxi mom about the stroller. We had one for DD last year and will again this year. She is 8, about 80 pounds and 56" and fit in one fine last year. If things got too overwhelming (sensory or anxiety) she simply went in the stroller and read a book. This always helps. She also had a favourite stuff toy in the stroller.

But if you and your son have done disney many times before without a stroller, he might not want to go in one. DD was the opposite, she hadn't been in a stroller for many years and thought it was a treat.

 

[Earstou]

We haven't told our DS about the Aspergers, so I too avoid him overhearing. I try to give him something to do, when I need to talk about it when he is around. Sometimes it's a new toy (but at age 12 toys are going by the wayside!), sometimes I'll give him a treat to divert his attention, sometimes it's a book or magazine, something like that. Would your ds listen to music with a radio or CD player and headphones? You could get some Disney music he likes and present it to him just as you are ready to get the GAC.

I've never gotten a GAC for my son, but after visiting DL this summer, realized this is something I really should do for him. He kept asking to go back to the hotel, didn't want to do anything. It wasn't until later in the trip that I realized the crowds had bothered him.
I'm still unsure how to handle my ds knowing/not knowing about his condition. His originial diagnosis was ADHD, and that's all he knows.

 

[taximomfor4]

I'm still unsure how to handle my ds knowing/not knowing about his condition. His originial diagnosis was ADHD, and that's all he knows.

Tough, isn't it? My oldest dd (12, 8th grade) had NO idea she was diagnosed with ADHD. She knew she had gotten tons of testing done by many professionals all over town 5 yrs ago, and knew that the school adjusted her grade level then. But until her 8th grade guidance counselor sent home a paper for me to sign in dd's backpack, she had NO idea of a diagnosis. She was so upset at me! So I had the talk with her that I had to have with myself 5 yrs earlier...that putting a term on her doesn't change who she is and has been her whole life.

hugs for everyone, I feel lovey today.

Beth

 

[riu girl]

I'm in the same boat. Dd8 knows that she has "behavioural/attention challenges" but I have never mentioned ADHD (diagnosed at age 3). I think that she would use this label as an excuse for poor behaivour. I can just hear her now "I can't help it, I have ADHD".

At 8, socially she is MUCH younger, but academically she is WAY ahead, so I wonder when the time will be right to tell her about the diagnose. DH didn't accept his diagnoses until he was almost 40 (and he still now thinks most of the time that assessments/diagnoses are a bunch of crap). He just calls himself an eccentric genius (which he is along with having ADHD and anxiety issues).
to everybody going through this with their kids.

 

[Kitty-chan]

I'm new to all this, but I think the whole question of when/if/how to tell is very individual.

My son was a little sad when we first told him his diagnosis, but he also seems to find the information helpful. Especially about the sensory stuff -- it almost seems like before, he was wondering why we didn't smell/hear/taste the terribly strong things that were bothering him, and didn't understand why people were so convinced that he'd love certain Disney attractions that he knows full well would send him over the deep end. Now, he doesn't find other people's behavior so puzzling -- he knows that their brain just works a little differently than his. For example, there was a CM at DLRP this summer who just couldn't possibly believe my son wouldn't like certain rides, and DS was confused until we talked about his different sensory experience, and then he understood how the CM would be confused, and then DS didn't take it so much as a personal affront anymore.

In other words, DS has always known he was different, now he's just got a new label for it, and a new way to understand why people interact with him the way they do.

It's somewhat the same for me, from a different point of view: I find his eccentricies easier to take now that I know it's not like I'm crazy, he really does act differently from most kids.

Please understand I don't feel that everybody should handle things the way that we're doing it -- I just wanted to share my experience too.

 

[SueM in MN]

i just wanted to add the names of 2 very successful people, one with ADD and one with ADHD.
Mary-Kate Olsen (of the Olsen Twins) has had her problems recently, but no one can say that she has not been successful as a business and entertainment person. She mentioned in an interview when she was 17 that she had ADD; it was in the context of taking tests before college. She mentioned that because of her ADD, she got some extra time.

Another person who is very successful is Ty Pennington from Trading Spaces and Extreme Home Makeover. The first time I saw him, I thought if he had not been diagnosed with ADHD, he should probably go in for an evaluation.
Recently, I noticed that he is a spokesperson for one of the drugs used for ADD and (as the spokesperson) says how much it has helped him to deal with his ADHD.

 

[melomouse]

First of all - I am glad you are here, too and that this board is here.And I undertsand the grief work - I STILL have days that I struggle with the fact that I am going to Holland instead of Italy!

I can so much relate to your story. I am a widowed mom of 2 - DS(now 13) was dx'd w/ Asperger's when he was 8. We have just come back from our 6th visit to WDW and this was the very first time I got a GAC - in fact I posted here before we had left.His meltdowns have dramatically reduced in the last couple of years. Now it's more the coordiantion, awkwardness and the outspoken commentary due to social impairment as well as that lovely developmental phase - adolescence.He has also always has a very loud voice, can't stand sticky hands and intermittently hates germs. So.. it's a trade off.

We never had a problem with lines in Disney - either because of FP or because of how I structured or unstructured the days. CM's are so used to all kinds of disabilities and have been fabulous for Evan even w/o any GAC.This time, due to suggestions from his therapist whom he works with now. I got the letter, went to MGM next day w/o the GAC and picked it up at Epcot the next park day.

Evan has known about his dx a long time, and we continue to define Asperger's and not use it as an excusefor what he is unwilling to do.This kid would sometimes use ANY excuse - lol - his Dad died, his brother left - and not that these are not valid, but - no excuse!! So, when I went to get the GAC at Epcot, he said he did not want to be embarrassed and have everyone know about Asperger's. I sad no need to be embarrassed - that we all have something DD has eczema, I have neck problems, etc - and this might help us out. The firast time they let me in the FP line - at the CM's discretion - he was thrilled to have that GAC. Only used it, or tried to, 5 times in 7 days...it also helped us get out of the park quicker one night when he was very very tired and near meltdown - actually, was IN meltdown.

I hope this helps. Feel free to PM or email me....

melomouse

 

[riu girl]

If you don't mind sharing, would you please tell me how you used the GAC to exit a park quicker? I thought they could only be used at attractions/shows.
Thank you
Suzy

 

[taximomfor4]

If you don't mind sharing, would you please tell me how you used the GAC to exit a park quicker? I thought they could only be used at attractions/shows.
Thank you
Suzy

I was wondering the EXACT same thing! Without a GAC once, we got taken aside to a quiet area when it got really bad... but with GAC, there has never been any sort of accomodation at all for outside the attractions. Who would you show it to?

Beth

 

[melomouse]

Hi all -

It was a late night at MK and we closed the park. I try to usually never do this, or else I hang out really late til the crowd thins with ice cream near Plaza. DS was disintegrating from the time Spectro was over, spent the Wishes presentation in the restroom as DD and I watched outside near Small World - awesome spot, BTW -


We exited the park and found hugs crowds lined up even to GET to the monorail to the TTC. Then DS needed tissues because his nose runs and he was crying. Teo CM/cleaners came over and asked if they could help. I told them he has a disability and told them I even have a GAC card, but there wasn't too much to do except wait til the crowd thins. Showed them the GAC card and they glanced, then escorted him back in to go to the restroom and get some tissues.. mom had run out.When he returned, DD had lost her new $15 light up pin we had just gotten 2 days before. CM gave her coupon for a new pin, and offered to take us into Lost & Found if we preferred that. Then another, more "official looking" CM came over, saw the situation and told me to use the resort monorail - line vanished on that one by this time - and take the 2nd stop to the TTC. I had totally forgotten about that.

So that's what we did.

I think I also used it, or showed it, at some point by way of explaining his behavior - much as sometimes it is suggested to have business cards made up - but atm, I can't remember exactly where.

Hope this helps. I didn't think it was a big deal. But, OTOH, if using the GAC gets a CM to respond more quickly when I travel as a single parent, or they have suggestions - albeit simple - I am thrilled.

Hope this helps.

melomouse

 

[MadisonMom]

As president of our local Autism Society chapter (www.autismmadison.org), I've gotten to know/meet many adults with autism and Asperger's Syndrome. Almost universally, they recommend telling your child about his/her autism/Asperger's. As one adult on the spectrum put it, make it as common a word in your household as you can. Your child knows that he/she is different and understanding his/her challenges will empower them.

Shortly after my son was diagnosed, someone recommended a wonderful book that really helped me through the grief process. It is called, "Changed by a Child." It is not autism-specific, but rather a collection of essays written by parents of special needs kids covering a variety of topics and emotions.

-MadisonMom

 

[spiceycat]

Hey I have melt down.

when it is time to leave - it is time to leave.

I try to go in the off season - when the crowds aren't so bad.

that says.

are you staying in a WDW resorts? then you can get a wheelchair from Disney for free.

I started to get one when I had knee surgery.

I have continue to get one for my mother - but there are times when I still need to just get away from the crowds and the noise - these things are great for that. I bring a book and believe it or not a camera.

when I take pictures everything seems further away.

does that make sense?

hope everyone's children learns to deal with their problems. understanding parents can work wonders.

 

[JohnnySharp2]

We are from England and have an Autistic boy - we use the GAC passes on our visit each year.
They are there for a purpose , to enusre people with 'special needs' are catered for.
People or children with any sort of disABILITY are special.