What do I bring for rare diagnosis for GAC?

[ladbrandy]

Hi,

My almost 3 yr old daughter has a chromosome disorder called partial tetrasomy of chromosome 21 (same one thats duplicated in Downs)
There are only 5 other reported cases. Right now she has significant receptive and expressive language delay. Motor ability is normal. She does not stay in the stroller or stay next to you when walking, wont hold hands. I tried a harness but she lays on the ground or crawls and makes me embaressed that she looks like a dog. She is also allergic to suntan lotion, discovered last WDW trip. Can I just bring in a copy of her diagnosis?
For when she stays in the stroller it would be good to use it as a wheelchair, and when she is on the harness, it would be good to have lines to a minimum.
She may have cognitive impairment also, she is too young to know.
I am afraid if I have to talk much to the GAC person , I will start crying.

Karen

 

[3DisneyNUTS]

Hi,

My almost 3 yr old daughter has a chromosome disorder called partial tetrasomy of chromosome 21 (same one thats duplicated in Downs)
There are only 5 other reported cases. Right now she has significant receptive and expressive language delay. Motor ability is normal. She does not stay in the stroller or stay next to you when walking, wont hold hands. I tried a harness but she lays on the ground or crawls and makes me embaressed that she looks like a dog. She is also allergic to suntan lotion, discovered last WDW trip. Can I just bring in a copy of her diagnosis?
For when she stays in the stroller it would be good to use it as a wheelchair, and when she is on the harness, it would be good to have lines to a minimum.
She may have cognitive impairment also, she is too young to know.
I am afraid if I have to talk much to the GAC person , I will start crying.

Karen

Karen my one experience speaking with the cast member at guest services about Chris could not have went better. She was empathetic and did not need me to explain things in detail. She handled herself and the situation with incredible professionalism. You could tell she was appropraitely trained in helping people with these issues. I just took a survey from Disney where I wrote down all of this about her.

I got choked up when speaking of what we were going through. I did not have any medical documents but I do carry Chris' seizure meds with us so I could have used that as "proof" however it wasn't needed. Our experince with WDW and the gac was amazing. Every cast member at the attractions were accomodating and made our days easier even though Chris was having 3-4 seizures a day.

So don't worry too much about how they will be. They were amazing for us and all I needed to do was explain our situation. It isn't formal to where you need dr notes and medical paperwork.

 

[SueM in MN]

Most of the CMs in Guest Services are very nice and will try to be helpful to you.
Some people find it hard to talk about their child's difficulties. At least one person has psoted here that what they did was write up a little information to help them get thru talking to the CMs. Just helps to keep your thoughts focused. One actually wrote up her information and asked the CM to read it because it waqs hard otherwise for the parents to discuss it in front of their child.
Just keep in mind that the CMs generally want to help you. It's just that they don't know what you need, so you need to explain your child's needs in a way that lets them know what you need.

 

[salbythec]

I always save my GAC and show it for the next time I go. It works out well, I don't have to keep explaining and I get the right card.

 

[LisaBi]

Remember - the diagnosis itself is not what they need to know to issue the GAC. What they do need to know is what your NEEDS are to allow you make the most of your trip.

BTW - What is "tetrasomy"? I've never heard of it! (My son has Down Syndrome.)

LisaB

 

[riu girl]

I was the person who typed up a letter for the CM at guest services to read. I was afraid that I wouldn't be able to explain the situation correctly (especially with my daughter standing right beside me) without getting overly emotional. DD7 has no idea that she is different then other kids and this was not the time or place for her to find out.
I just kept the letter short and first listed the diagnoses and then I listed the stamps I was requesting (and why).
The entire letter was maybe 3 pragraphs long.
Believe me, I am very emotional when it comes to my daughter and the letter made all the difference.
Also, I have saved the GAC (as well as the letter) for next time.
btw, the CM was a very kind individual and was most helpful.
Have a wonderful holiday.
Suzy V.

 

[ladbrandy]

Hi,

Thank-you for your replies.

What are the various "stamps" that I could request?

tetrasomy means she has 4 copies (2 extras and 2 normal ones) of the chromosome 21, but it is partial, so not the whole chromosome is duplicated.
So she will have some DS features and not all. There are only 5 other reported cases so basically they dont know what is in store for her.
Right now she cant communicate that well at all. Single words and rarely used, age almost 3. I dont know if that is more delayed than someone with DS or not. I decided to take her out and we went to a Chuck E Cheese type place and she ran right into a bigger girl and went flying onto her back and head.

Karen

 

[SueM in MN]

Rather than asking for a specific stamp, it's better to just know what sorts of problems you expect to encounter (like does she have a hard time with being in close proximity to other people, on medication that can cause her to burn severely with sun exposure, etc). Some people with kids with special needs, do find it helpful to be able to bring a stroller into lines with them. This helps from several standpoints; separates her from others, provides a "safe" place with less stimulation to retreat to, saves energy for someone with low muscle tone.
If you are able to explain her needs to the CMs, they will be able to choose what sorts of adaptation will be helpful.
They don't need to know her diagnosis, they need to know her needs.


I DON"T WANT THIS THREAD TO GET INTO EXACT SPECIFICS OF WHAT TO SAY OR ASK FOR, since I have been told that people without disabilities have used information from boards like this to know what words to say to get a GAC. If you can explain your needs, the CMs will try to help you. If the specific GAC that you get doesn't seem to meet your needs, you can always go back to Guest Services and explain again.

 

[MommytoMJM]

I DON"T WANT THIS THREAD TO GET INTO EXACT SPECIFICS OF WHAT TO SAY OR ASK FOR, since I have been told that people without disabilities have used information from boards like this to know what words to say to get a GAC.

Oh my goodness, please tell me this isn't so, isn't our life with disabilities hard enough without this kind of crud??? Blech!

 

[SueM in MN]

It (unfortunately is true).
I have gotten some PMs from peeople who have acquaintances who did it!

And, our family actually witnessed someone with a fake Make A Wish button.

 

[LisaBi]

Fake Make-A-Wish button? That's as low as you can go!

LisaB

 

[3DisneyNUTS]

OMG Sue if my posts have said too much please take them off. I will PM anyone who wants the info KWIM?

 

[kandeebunny]

I bring a letter from my Dr explaining my condition and my needs. I am capable of it myself, but I have the issue that I "look" healthy as I have no physical deformities, but all my muscles are slightly deformed. I have had no trouble getting what I needed, if one CM doesn't help you, ask to speak to someone else. I also save my previous GAC's and bring them with me as well as a new and updated letter.

Good luck and enjoy your vacation!

 

[torianne31]

Sue, if you're looking right now, can I pm you with a question?

 

[3DisneyNUTS]

delete sorry

 

[SueM in MN]

Sue, if you're looking right now, can I pm you with a question?

I'm PMing you.

 

[Mish]

When we went in September CM's were great. My son has a hip condition that causes pain and if you look at him he looks perfectly healthy. I brought a letter from the Doctor and was given a GAC pass. They stamped my pass saying we could use our stroller as a wheel chair. Most cast members recognized my stroller as and Special Needs Stroller and I think only one time we were questioned. People on the line looked at us since it doesn't look like anything is wrong with him.

 

[bradleysnana]

We used a GAC last time we went for the first time. My Grandson is autistic but does have some verbal skills so it is somewhat difficult when you only spend a few minutes with him to know anything is wrong. 10 minutes and there is no doubt. It was the first trip since we have began taking him that I actually enjoyed. He becomes very physical when he is in a crowd of people. Everyone looked at us like we were terrible and why couldn't we control him. With the GAC, we were able to wait in an area where it was not crowded. Much Better!!!
I love the idea of keeping your GAC. I wish we had done that. We are going back in a few weeks and even though I know it is better with the pass-it is emotionally draining to request one.

 

[jnrrt]

I am new to this board, so please let me know if I'm not following any protocol, but I had a question.

First, I think it's absolutely despicable for someone to fake anything to try and get ahead. On the other hand, I know we went once, and I needed a wheelchair because of an injury, and many people were quite harsh to me, assuming that I was just trying to skip lines (and you can't possibly explain to everyone that you don't get to skip any lines, they're just all different). So now, I always assume that I just don't know the problem, and think the best of people. And I was so impressed with the level of accessibility at the parks!

But now I've gotten off subject. We're going on a trip in the fall with my father who is terminally ill. His disease is very rare. He will be wheelchair bound, but also becomes exhausted very easily, and cannot be out in the heat for long periods of time, etc. We're going in the fall to try and mitigate crowds, temperatures, etc. He will have almost no mobility. We are trying to take a trip with all his grandkids before he is unable to travel.

I know very little about this card. Would there be any reason for us to try and obtain one for him, or would we be getting most of the available help simply because he's in a wheelchair? You can certainly PM me if you think it's inappropriate to answer on the forum.

Thanks for any help.

 

[SueM in MN]

We're going on a trip in the fall with my father who is terminally ill. His disease is very rare. He will be wheelchair bound, but also becomes exhausted very easily, and cannot be out in the heat for long periods of time, etc. We're going in the fall to try and mitigate crowds, temperatures, etc. He will have almost no mobility. We are trying to take a trip with all his grandkids before he is unable to travel.

I know very little about this card. Would there be any reason for us to try and obtain one for him, or would we be getting most of the available help simply because he's in a wheelchair? You can certainly PM me if you think it's inappropriate to answer on the forum.

Thanks for any help.

Very sorry to hear about your dad.
Since you are going in the fall when the parks should not be so busy, he may not need a GAC.
He would not need one in order to use the wheelchair in line, but a GAC might be helpfull for allowing him to wait in a cooler place out of the sun.
If you go to Guest Services with him and explain his needs, the CMs will help you out.
You can always get a GAC and sort of use it as insurance. If the lines are short, he may not need to use it at all. If it is busy, he can use it to get a more suitable place to wait and conserve his energy for having a magical time with his family.

If he needs a place to rest for a while, you can take him to First Aid in any of the parks. They have nice cots to use for resting. If you have 2 cell phones in your group, he can call the rest of the party when he is done resting. We have found with our DD that sometimes going back to our room took a lot more energy than just staying in the park and resting in First Aid.

Here's lots of pixie dust for a great trip and lots of good mem\ories.