Non visible disabilities

[JohnnySharp2]

Our son Joshua now age 6 is autistic, and on our first visit 3 years ago we were very self conscious about others would think when we use the GAC. But after many trips I don't remember any bad comment or event. We like many of you only use it as a last option. My feeling is that you are there to make sure that your family is having a good time. Do what you can to make it enjoyable. As long as you are not rude or obusive towards the system, most people don't mind (they are enjoying their own vacation.)

Now we do use a stroller for him and we even got one to handle him now that he has gotten bigger. We use mainly as we walk through the park. He can walk, but this is more for us to keep him from running off and to help him have a place to himself.

Enjoy your trip.

That sounds very similar to what we do with our son, who is 11, also called Joshua

As I say earlier we have had comments from CMs in the past, unfortuntely it does happen - but as you say the important thing is to remember we are there to have a good time.

 

[scojos]

hey my son who has Aspergers is also called Josh!
Nice to see you around Johnny, hope you, julia and josh are well.
We had printed t shirts too, be warned turns into a bit of an obsession not sure if you seen this i did post in back in aug when we got back...
Josh loves stitch as "he has autism too" , we had bfast at ohanas with matching tshirts, except josh split OJ down himself just as stitch arrived!

all the shirts say 1:150 , my "son/brother" has autism.
we had lots of positive comments about the shirts, people were very nice and kind, no one questioned josh being in a stroller or his behaviour when we were wearing the shirts.
The 1 day we didnt have a printed t shirt on, josh freaked at CS as he wanted something not on the menu, against my better judgment i insisted we stay there and eat, he ran off and i had to pin him against the wall, body blocked, until he calmed down. That day i felt like an awful mother becuase everyone watching made very lo9ud comments. annoyed and in tears that my son, was distressed i turned around and politely told them to judge someone else i was doing what was safest for my autistic child.
safe does not always mean best, and i probably could have handled the entire situation differently but i didnt.
i feel the general consensus at WDW is unless you bend over backwards to give your kids everything you are a bad parent.
im a bad mother, but my son was safe and that was all that mattered. Ramble over!

 

[stampin_fool]

all the shirts say 1:150 , my "son/brother" has autism.
we had lots of positive comments about the shirts, people were very nice and kind, no one questioned josh being in a stroller or his behaviour when we were wearing the shirts.

Scojos

May I ask where you purchased these shirts? My son loves stitch and I think these would be perfect for our upcoming trip. Also, did they have anything on the front of the shirt or just the back?

Sorry for the thread hijack!

Ronda

 

[ireland_nicole]

Stampin Fool;
go to the disign threads in the communities forums (on the Disboards). Look for any post by rumblytumbly. in her sig are the links to her photobucket account. She has a section labed autism designs. then you can get to all her designs. She has fantastic ones! (Some I gave her the ideas for, BTW; if it mentions "neurodiversity" it's mine hehehehe) Then I used the Avery T-shirt transfers and the rest is history.

FWIW, I'm sure there is a much easier way to get to rumblytumbly's stuff, I'm just, how do you say, not very tech savvy, i guess.

 

[scojos]

Scojos

May I ask where you purchased these shirts? My son loves stitch and I think these would be perfect for our upcoming trip. Also, did they have anything on the front of the shirt or just the back?

Sorry for the thread hijack!

Ronda

not a thread hi jack at all.

ireland nicole is right, rumbly tumbly disigned them, she is no longer active on the boards, but if you do a thread search you will be able to find her work. Kari is an amazing disgner and much missed...
Donatalie another one of the disigners on the disigns thread also has some amazing stuff, she is active and will change any requests you have.
The disigners over there are amzing and give their time to make other peoples holidays magical, all they ask is you post photos of your work
tracy

 

[MinnieVanMom]

Our DS also has Autism but is high functioning. At our airport the TSA got down and said to him "Aren't you too big for a stroller?" I was shocked and immediately told him that DS has autism. His face just went blank. No apology but hopefully he will think before saying something.

I also use to look at situations and judge others. Lucky I never said a word, just thought it. But as we all know, in thought, word and deed. So I was guilty as charged.

Now, when I see a Mom, Dad, person having rough time of it, I will just ask if I can do anything to help. Even just holding a handbag so they can handle a child helps, opening doors, putting groceries in the car while they deal with kids. Or just saying Hi helps. I look at life so different now.

We get a GAC and stroller tag each time. I have a waterproof pastic holder attached to our lanyard and I put our room keys in with the GAC on the back side. Then when need to show it we just flip over our holder. It is indiscreet and easy to use.

I wish I didn't care about the LOOK but it still bothers me. I feel like I am the worst mom in the world and everyone is staring. I wish it didn't still hurt.

 

[ireland_nicole]

Minnie Van Mom; and the rest of us, too

 

[JohnnySharp2]

Nice to see many of us with the same thoughts.

Scojos - hello again dear friend, Julie and Josh are fine thanks - trust you are all well too.

 

[LuvsTinker]

I came to this board because my DH had a stroke recently and I was thinking about posting a question. Then I came across this thread.

My first thought was "Who cares what others think. What does it matter what some insensitive person thinks."

Then I started reading some of the replies and realized that I've been one of those insensitive people. I don't know how many times I've looked at an older child in a stroller and thought that either the kid was lazy or the parent was. I have 5 children, all adults now, but the first time we went to WDW they were ages 3, 4, 6, 8 and 10. We never used a stroller and they did just fine. I guess I was fortunate.

While I'm sure there are some people who use a stroller for an older child strickly for their convenience, I will never judge again.

Thank you for enlightening me. Have a wonderful trip.

Thanks for your honesty and caring words.

My younger son is 8 and is on the spectrum - believe me I've learned not to judge anymore.

On our trip in Sept. I was checking out when a woman was sitting on the floor with her daughter (about 4 or 5) who was screaming and the older CM woman checking me out made a face and comment. I said "my son has autism and I've been in that position before" Hopefully that child just had a long day not a disability, but I wasn't about to judge that mother.

 

[SueM in MN]

I started reading the posts from the last few days and wanted to post some to individual posters. There are so many comments, that I think it's better just to give a bunch of hugs

 

[scojos]

Nice to see many of us with the same thoughts.

Scojos - hello again dear friend, Julie and Josh are fine thanks - trust you are all well too.

we are all well, thanks, just returned from a magical week in Turkey, not disney but very relaxing
Tracy

 

[sharadoc]

HI all,

I love reading these threads. It's making it so much easier for us to plan our trip with our son who is 13 with ASD. He is verbal, although around a 5 yo level. He will say hello, look you in the eye and shake hands on a good day, read a menu and pick what he wants to eat, and act pretty "normal". On other days, he will stim uncontrollably, repeat everything you say and make noises. Those days are much easier for the general public to comprehend his disability, but not the kind of day I want

We absolutely plan to get a GAC for him to handle his anxiety issues in case it's too crowded plus we want to sit at the back or near an exit for shows and want to explain his disability to characters in a simple way.

I'm thinking of making a button or something for the whole family to wear with an autism awareness message and the "my son/brother has autism, please be patient" notation on it. On the other hand, I don't want to advertise.

I like the business card idea, too. We gave up worrying about what other people think years ago, but we want to make sure everyone has a good time, too. I think making others aware will make our vacation all the more fun

All the best to all of you.

 

[maroo]

we are all well, thanks, just returned from a magical week in Turkey, not disney but very relaxing
Tracy

Cool!! I spent two weeks in Istanbul in 06...it was great! I have not met many people that have been to Turkey. Did you guy get to Ephesus by any chance?

 

[maroo]

And...to everyone on this thread...

Sue, thanks again for your expertise!

And to all of you guys that have kids with non-visible disabilities...I hope you all have a wonderful time at Disney. I can't think of a better place in the world to have your needs met and have your kids be so positively stimulated!

I am amazed at how each of you guys use Disney as an opportunity to allow your kids to get better...at waiting, or talking, or socializing...whatever it is...that a place like Disney would be a place where kids could get better!

Sometimes I wish we could educate the crowd all at once, though, you know...like scream from the rooftops...til everyone heard! "Wanna change places...PLEASE be my guest! But you have to take it ALL...so think carefully before you decide!"

I do think it is a good idea (within your comfort zone) to wear shirts or buttons...something that educates as you go...I loved the autism shirts that showed the 1 in 150 statistic.

Anyway...Be encouraged. You guys are awesome and an inspiration to all of us...

 

[lilyian]

Don't be concerned in the least bit! I suffer from a very rare disease called Idiopathic Anaphylaxis. While any attack could be fatal for me, on the outside I look just like any typical healthy mommy. You would have no idea that I have a hidden illness. I have been going to Disney multiple times for the past 10+ years, and I have always used the Guest Assistance Card. Yet, I have never gotten an odd stare or mean look. If anything, I just seem to get looks that say they think I am so lucky! (What I wouldn't trade to wait in line like everyone else and not have this illness.) Disney is so wonderful for people with disabilities, and you will have a great time! Don't worry!

 

[JohnnySharp2]

We are strongly considering wearing 'something' for our next holiday along the Autism Awareness lines.
Never have done before but we are thinking now maybe the time is right to, the reluctance comes mainly as we don't want to be thought of as different to anyone else, we want to queue for rides and just enjoy ourselves like everyone is doing.

I think anything we can do now though to get the message across is a good thing.

 

[BeckyScott]

Before our trip, I read somewhere (and I suspect it was here) about the whole special accomodations thing and hesitance to use it. Not wanting to stand out.

And I remember a response that I took to heart. Disney is one of those places where the word "special" isn't an insult. As parents of special needs kids, we've all been thru much more than we ever thought we would. We've all tried numerous times to take our kids to places or activities that it just didn't work out, but we keep trying. And many of us will meet another mom with a special needs kid, and we can just look at each other, and there's an understanding that happens that no "typical" parent has. Disney is one of the few places that acknowledges the road we've been on, and says okay you really are special.

 

[JohnnySharp2]

Well said.

 

[ireland_nicole]

Here's a pic of the kids in their shirts at AK (I think, it's my first time attempting to post a photo)

I put the design on the back of the shirt b/c I thought it would be more comfortable to wear. You can't really see it, but the caption at the top of the design is "Seeing the WORLD from a different point of view" in a Disney font.

 

[ireland_nicole]

ummm, o.k. it worked, but does anybody know how to size it smaller? They look a bit like Godzilla at the minute