Walt Disney World and Accommodating Autism Spectrum Disorder - the Guest Services Card

Taking someone with an Autism Spectrum Disorder on vacation provides its own challenges, which are unique to each family. In fact, for many families, concerns over new places, new experiences and unpredictable food choices can stop a vacation before it even starts. Let’s face it, who wants to go on vacation prepared to explain your child’s flavor of autism throughout the trip? Or worry that disaffected workers will not be able nor want to answer questions about park attractions and food options? Enter Disney. The Disney staff is well trained to accommodate families with special needs, both “visible” and “invisible” (think Asperger’s, juvenile diabetes, etc.) One way they do this is through the Guest Assistance Card (GAC).

The Guest Assistance Card, though well known to those who frequent Disney, isn’t well known to most, and is a little tricky to find on the website, if not impossible (I'm not sure it's even there). What is it? It is a card that can be used to identify someone with an “invisible disability,” allowing them certain specified accommodations. (We've only used it once, so take our advice as one family's experience and feel free to share your own! Always check directly with Disney for current policies and guidelines.)

How can it be used? Let’s start by stating what it is not. It is not, contrary to my daughter’s hopes, a get-to-the-front-of-the-line, with no waiting, ever, pass. One thing it can do is allow the guest (and a limited number of those in the party) to use an alternate entrance or waiting area (often the handicapped entrance), which will, indeed, result in a much shorter wait. Sometimes, no wait at all. (And, yes, in some cases they will be ushered to the front of the standard line, as it all depends on the ride and who is working at that moment.) For shows, it can mean an alternate seating area. This is very helpful for those who have significant difficulty standing in line or other sensory concerns. However, if FASTPASS is available, per Disney, do choose to use it first.

What are other ways it can be used? For us, we used it as a conversation starter. As we were unfamiliar with many of the Walt Disney World attractions, this allowed us to easily approach staff to ask about whatever our concerns were. (Sure, questions can be asked without a card, but for parents of older kids, it makes the situation much less awkward.) For rides, we’d pull it out (as a subtle way to show she has an invisible need without verbalizing her autism to fellow tourists surrounding us) and ask about certain sensory components of the ride so she could make a choice as to whether or not it was worth a try. Another time, we used it to ask about ride duration (from waiting in line to the end of the ride), where the exit was, and if there was somewhere safe she could wait while my husband and I rode.

(NOTE: We let our daughter wait for us as she is old enough and responsible enough. Not all kids will reach this level of independence. Only choose this option once or twice, as it is a family vacation, where everyone should enjoy themselves. And, for goodness’ sake, never ever leave young kids alone! Also, Disney staff is *not* responsible for watching your children – unless you are paying for their childcare services. But you already knew that, didn't you. :) )

One thing we did find is that the card cannot be used for character meet and greets. However, we did use her card as a speaking tool to chat with the character escort when one line closed before she could get in it. We asked for tips on how to meet certain special characters, and that particular Disney staff member was quite helpful – and understanding. Again, subtly pulling the card out (most guest have absolutely no idea what the cards are for) enabled us to start a conversation without drawing added attention to our daughter’s situation. It also demonstrated to the staff there is a true as opposed to perceived need, which is wonderful when your child is a teen or older, as it is uncommon for kids that age to have difficulty reining in their disappointment, etc.

Unfortunately, many unscrupulous adults do apply for these cards as a means to receive special treatment, etc., when no true disability exists. (Ironic, huh? We go through life with folks like that giving us raised eyebrows and rude comments, but when they have the opportunity to take advantage of something that gives us a needed breather – they do. Anyone shocked…?) In fact, the only negative interaction we had with any of the Disney staff at Walt Disney World was when we were applying for a GAC for our daughter. I was a little uneasy approaching the counter, thanks to so many who have abused this system. After reading up on it, I did bring paperwork from Kristina’s doctor to back up her diagnosis. Unfortunately, as we approached Guest Services, the woman working there already had a scowl on her face (very atypical for anyone working at Disney!). As I mentioned why we were there, handing her the paperwork, she shoved (yes shoved), the papers back at me, firmly stating she cannot look at personal forms. (This, of course, has me scratching my head as to how they weed out the imposters.) After giving her the required information, we received the card and went on our way – with the lady never even hinting at a smile. To be honest, in some respects I can’t blame her as I can’t even imagine what fabricated stories she has to deal with on a regular basis. Still, I am hoping this is not the norm, as it threw my Disney experience for the first part of the day.

Let’s break it down:

·         Guest Assistance Cards are available at Guest Services locations.

·         Be prepared to show documentation of the disability, even if it is never needed - and explain why your child needs this.

·         The individual applying for the card must be present.

·         The Guest Assistance Card is not meant to be, per Disney, a line jump pass, though it definitely will give you access to an alternate entrance with little to no wait. (Per Disney, use FASTPASS when available.)

·         There is no extra charge for the card.

·         Do not abuse it. Respect it, or we’ll all lose it.

·         The pass is only good for the duration of your stay and is nontransferable.

The Guest Assistance Card is helpful for many families – and each family will have different reasons and uses for it. Disney wants to make sure the entire family has a safe, happy time, and this includes accommodating those with other concerns that do not qualify for a GAC, such as food allergies. (Have an allergy? Mention it when ordering, and don’t be surprised if the chef comes out to speak with you!) For us, it provided peace of mind and played a small part in a successful family vacation.

As with anything else, don’t be afraid to ask for help and to make your unique situation known to Disney staff. Disney truly wants each and every person who enters the Parks to have a magical, memorable experience!

Have you used the GAC? Feel free to add your personal tips below!

So, What Did You Find?

So, when you looked at the picture in the last blog post, what did you find? (Click HERE  for the initial blog with the photo, or scroll down a little on the main page.) Did you see anything that made you have second thoughts about crafting with a Special Needs Kid in the house? Anything that made you feel tense?

Add a comment, and I'll post it in the body of this post. Once we have a good number listed, we'll start going over them. Are you game?

Ready? Set? Tell me! :)


(Ok, in all fairness, in the US and Canada, this is a big vacation week, so I'll let this run for a good week or more before we delve into the details. Sound good?)

Creating With Special Needs Kids In the House – a New Series

This spring, I had a wonderful chat with Mark Lipinksi, and was also honored to be a guest on his radio talk show, Creative Mojo, where we talked about staying creative with a special needs kid in the house. As most of you know, I’m the mom of a Super Special daughter, who just happens to have Asperger’s Syndrome, as well as Sensory Processing Disorder. But, you may not know that Mark, who is a fantastic quilter and phenomenal person, is a special needs dad, himself.  Although our kids have different concerns, there is most definitely overlap when it comes to parenting issues, as well as crafting and the creative process.

We also agreed this subject needs more attention.

So, I’m starting a fantastic new series, which will be sprinkled among my regular blog posts, called, “Creating with Special Needs Kids in the House”, and I couldn’t be more thrilled about it!

Why the enthusiasm?

Well, why not? After all, it’s summer (ok, winter for my Australian friends!), and the perfect time to introduce kids to all sorts of crafting, quilting, etc., and the Arts! First, let’s take a moment to be honest, here, and do some fessing up; so many of us have a special needs kid in the house and we may not feel comfortable pulling out the play dough. Or, heaven forbid, paint.

And don’t even mention scissors…

Especially to my sister, whom I gave a haircut to way back when plaid and polyester paisleys actually went together.

“Yee gawds,” you must be thinking, “is there enough cleaner in the world to fix the inevitable chaos following my child’s creative process?”

Relax. We’re going to have fun. Trust me. (We’ll deal with the inevitable messes later.)

Are you asking yourself, “Does she mean crafting with my kid? Or does she mean how having a special needs kid under the roof affects my creative moments? I’m a little confused. I thought this was about me. Or is it about them?”

I mean both. Even with a child with good fine motor skills, there can be concerns when she works with certain tools. And, let’s be honest, for those of us who create for a living, a meltdown in the family room can really ding our personal creative energies.

There is so much to say about the subject, which is why this is going to be a series, rather than a blog plopped here for “blogging day”. For instance, we’ll cover things such as how to find time to create, keeping your child’s weaknesses (and strengths – don’t forget those!) in mind, as well as general safety. And, just like my Facebook page for “Asperger’s in Pink”, I want this to be an interactive series. I value your input as well as your insight. We learn best when we learn from each other, don’t we?

Are you ready?

First assignment, if you will (ok, I know school is finally out, and the last words you probably want to hear are “homework” or “assignment” – or that even uglier words, “test”…), is waiting for you. Look at the image from my studio and see how many hazards you can find. Depending on your child(ren), your answers will likely vary, and that’s ok. Feel free to post them in the “Comments” section, and I’ll reveal my own answers next time. And I’ll bet you see some I’m missing. So, are you in? Let’s do it!

Ready?

Set.

GO!

Introducing...Kristina

Those of you familiar with my artsy side have no doubt heard me mention my passion for Autism Awareness. In fact, a section of my ArtFire studio is dedicated to original pieces that either work to further Autism Awareness (specifically Asperger's Syndrome) or stem from that passion.

And those of you familiar with me from the autism community probably already recognize the name in the title of this week's post: Kristina.

Kristina has Asperger's Syndrome, an Autism Spectrum Disorder. She is also my incredibly strong daughter, and is often referred to as "the star" of my book, "Asperger's in Pink". When writing it, I, in essence, did the talking for her. But now she's a little bit older and it's time she speaks in her own words.

Kristina is blogging under Asperger's in Pink, right here on blogger. After all, it's her story, right?
Kristina is tweeting, too: http://twitter.com/Kristina_AIP

She's just starting out, and neither of us are sure how frequently she'll post or tweet, but when she does, you can rest assured that those words are 100% hers, and hers alone. She would love it if you would follow her on this portion of the journey. Meanwhile, if you have any questions, or concerns, even, feel free to direct them to me. I will continue to run this blog as I have been, posting about anything from art to autism, because, as I write in the book, life consists of more than just a few segments. That isn't changing.

As for Kristina? I'm looking forward to reading what she writes. And I am so proud of her that she is choosing to continue to share her voice with the world.

Welcome, Kristina! Welcome.

My Husband Will be a Featured Writer Here Shortly

Somehow, I've talked my husband into writing a blog post. Actually, it was surprisingly easy. I thought I'd have to pry him with all sorts of things, much of which would include me listening to all sorts of sports somethings, which typically go in one of my ears and out the other.

But all I did is ask - and he said yes.

(Hmm...what else can I ask him to do?...)

I'm not sure what he'll write, and I'm not sure if he does yet, either, but if you have any suggestions, I'll gladly pass them along to him for his consideration. My guess is it will be on Asperger's - but depending on what I put on the menu this week, it could be about my vegan-ish journey, and his take on that. And trust me, he does have an opinion on that!

~Julie

This Mother's Day Wish is For You

To all the mothers who could never rock their child to sleep
To all the mothers who fight back tears as their child's dance card remains empty
To all the mothers who wonder if their child - or their family, even - will ever be understood and accepted for who they are, not who others desire them to be 

You are incredible
You are strong
You are loved, even if your child has an atypical way of showing it

To all the mothers who know their child will continue to grow and succeed
To all the mothers who know their child will grow up to contribute so many amazing things to society
To all the mothers who do any and everything for their child, and who love them more than they ever thought possible

Happy Mother's Day
Happy, Happy Mother's Day!

Saturday is All About Autism

Saturday is World Autism Awareness Day, so I wanted to share a few simple notes from my personal relationship with autism.

My daughter has autism.

My daughter is awesome.
She is not sick.

She is incredibly strong.

She, and her parents, don’t “suffer from autism”, but we do “suffer” – if you will – from being perpetually misunderstood by others.

And that stresses us out.

We don’t like stress.

People tell my daughter they understand Asperger’s, but they usually don’t, as actions scream louder than words.

That makes us work even harder to hone our message about it.

Wednesday night is for pasta night, and no matter which restaurant you try to bribe my daughter to go to, it won’t work. It’s all about the pasta. It’s all about this thing called “routine”. When the restaurant rearranges the placement of the cheese, fruit and vegetables in her salad, she notices, and she points it out. She sees a movie once and has it memorized. And never, ever, ask her to wear anything with a button on it.

Autism is “high functioning” in our house, which means it is invisible to most people. Our story differs from those who will never talk, and never be able to take care of themselves, which means our perspective differs, as well. It’s important to note that autism is a spectrum. And although our stories are similar, no two are exactly the same.

So, please, don’t paint us all with one big blue brushstroke.

I could go on and on about it here, but I won’t. (Besides, if you read the book, you know a lot of our story, anyway.) Plus, time flies, my kid keeps growing up so fast that adulthood is a mere blink away, and if I, or anyone else, only see her as “a high functioning autistic”, what good have we done? What have we achieved? We need to see her beyond her label, to the gifted, unique person inside, who offers so much to this world. And she does have quite a bit to offer, which will only make this a better place for us all.

Sure, she has autism.

And I have asthma.

And some people have heart disease.

And others have trouble moving arms and legs, due to MS.

But there is more to us all than any one given aspect. I’d hate to have people only approach me in light of my asthma.

Unfortunately, we aren’t all aware. We don’t all have knowledge of autism spectrum disorders, and some of us will never bother to achieve it. In fact, some will loudly demand cures for those on the high functioning end of the spectrum, when a cure really doesn’t seem necessary. If anything, my daughter, and those like her, teach me more than I ever could imagine about life, the world, and myself, even, and that is a GOOD thing.

And that is all due to this thing called “autism”.

At my first book singing, a reader asked me if I thought I had Asperger’s (her daughter has it, and the conference had her wondering the same about herself.) Honestly, I don’t have the answer for that. But I can definitely relate to my daughter, and even Temple Grandin, at times. I do think in pictures. If I do have it, would I want people constantly campaigning to “fix” me? I know all that talk makes my daughter feel poorly about herself at times.

So this weekend, when you take a few moments to think about autism, remember that we are all different, and although a cure is very welcome for some and even necessary, for others of us, all we want is understanding and acceptance. And maybe, even, your friendship.

Don't you want the same?

Do You Know Autism, Or Do You Know Autism?

A long, long time ago, I studied French. I took it for many years, ending up with a Minor Studies degree in it.

Do I remember any? Un peu.

And that’s about it.

Well, not really. I can read it pretty well, but speaking it has become increasingly difficult. Over the years, I’ve discovered several words that just do not translate well into English. Words I wish we had in my native language, and which I translate (to French) in my own mind from time to time. Two of those words = one word in English. The English? “To know.” The French? “Connaître. Savoir.”

We use the phrases, “I know,” and “Do you know?” daily. But without context, those phrases cause confusion. For example, consider the phrase, “I know what you are going through.” That is typically followed by, “Thank you,” or even, “Do you?” There is knowledge of an intellectual sort as in, “You told me why you are having a bad day, so I now know it.” Then there is familiarity as in, “I know, because the same thing happened to me, and I understand.”

This is where the French comes in, and why I prefer it. The French use either savoir (for the former) or connaître (for the latter), and there is no doubt as to the meaning.

Many of us in the autism community feel the same way. Do you know (savoir) autism, or do you know (connaître) it? We tire of people claiming they “know” autism. That they “read about the struggles autistics face”. That so-and-so on TV has Asperger’s. But when push comes to shove, we are often left questioning, “…but do they really know it? They sure don’t seem to.”

Last night, my daughter opened up about gym class. She’s mainstreamed, and although she prefers for her peers not to know about her Asperger’s (think instamatic teasing, etc., despite the fact she is incredibly proud of being the “star” of a book about it), she does at times see herself as one of the “special kids” as the teens call it. She said that the “special kids – you know what I mean, Mom,” came to the gym to participate with her class. She said everyone was nice, but her peers seemed too soft with them. They weren’t giving them chances to fully participate. She thought they were being babied, as if they can’t “handle” whatever the game was at the time – and were never given a chance to fully try. And it made her frustrated. “How would you feel if you were one of them?” she questioned. “Wouldn’t you be upset? What if you wanted to be given a chance to play like the other kids? Sure, you might fall more, or drop the ball more, but wouldn’t you wanted to be treated just like everyone else? I mean…”

I bring this up as “we”, as a whole, need to go much, much farther than having a textbook knowledge of what autism spectrum disorders are. Why not try to mentally put ourselves in their shoes? We must not assume that everyone with autism is exactly like everyone else with autism. We are all individuals - autism or not. We must listen to the families who live under the same roof with it. We must look into the heart, the spirits of those who have it, and try our best to understand them, or if nothing else, see them as people with souls, just like us. For those of you unfamiliar, think how you would feel if someone treated you the same way you treat or talk about someone with autism.

There is someone “in there”. And they can hear you. And they have feelings. Please know that. (We are endlessly thankful for those of you who do.)

Nous devons le connaître .

We must “know it”.

Tears at the Dentist

Really, now. Who doesn’t love a trip to the dentist? Reclining in an oddly shaped chair, under a spotlight, under stress, with all sorts of pointy, shiny tools ready to do all kinds of things to us. As a kid, I remember being scared to death, but I always knew there would be a bowl of brightly colored lollipops to choose from at the end.

I guess that’s what you’d call ensuring repeat business.

But let’s face it. As a kid, I was pretty much scared of any and everything. (Pathetic, huh?)

Truth be told, until recently, our daughter has had positive experiences with the dentist. Then came the move, and, of course, changing every single professional in her life. Like most things, finding the right fits for her took time – and some switching around. This included the dentist.

Abstract Painting - Can you see the toothbrush?

No, I’m not going to get into why, who or how we switched. Besides, what doesn’t fit us, suits another perfectly, right? (And with a stack of supposedly waterproof cork awaiting me in the studio, that now has to be made waterproof, I’ll save the “what worked, what didn’t” for another time. That sheet I bought at the craft store has a proven penchant for soaking whatever’s underneath it. Ugh.)

But feel free to ask me. I’ve got plenty of words in my pocket and I’m not afraid to use them.

Recently, Kristina had her first visit with the new dentist, and we were both impressed – and relieved. After all, when you have Sensory Processing Disorder (SPD) in the family, trying new places doesn’t come easily. Throughout the cleaning, someone came and updated me on how she was doing. At one point, she mentioned to me that she had been tearing up during part of the procedure. But when they asked her if it hurt, she said it did bother her, but seemed to indicate that is was more than that. Then the hygienist asked if it was the sound the tools were making, and she said it was.

They voluntarily - and proactively - switched tools. Really. And my daughter was able to relax and complete the process much less stressed. And let’s face it, when she’s calmer, those working with her are able to be more productive, too.

And she didn’t “feel like a problem” to them. She felt respected and understood.

Later that evening, my daughter remarked that she found it amazing that instead of telling her to, quote, “Suck it up and deal with it, like they would have told me at other dentist”, they were sensitive to her sensitivities – and chose another option. The end result was the same: clean, healthy teeth.

Or was it?

Had she been with the previous dentist, the tears would have continued. Not due to discomfort, or the noise that no longer would be bothering her. But due to the fact that another group of people charged with her care did not take her sensory concerns seriously. Knowing that there ARE people who choose to and do know what it’s like to have sensory struggles, I can’t help but wonder if she ever has the desire to face those who’ve made her life more difficult by making clear to them who she is, then telling them…

“Deal with it.”

My Blog, Your Voice, Your Choice

Anyone who knows anything about me knows that I have an affinity for words. And I use them. Lots of them, all crammed together, spoken or in print. And many of you are kind enough to listen to them, to read them.

As I write in Asperger's in Pink, life consists of more than school, meetings and doctor visits. And this blog tends to reflect that, focusing on anything from Asperger's, to my studio, to that vegan-ish journey I've somehow landed on. In other words, my blog will never focus on just one topic. But sometimes an assortment of topics looks more like a jumbled closet than a tempting box of fine chocolates. (And everyone who knows me knows I'll take chocolates any and everyday!)

With that thought in mind, I'd love to know what you want to see here. What you would like to read more (or less) of. Which "chocolates" you'd like to see in this "box". More on Asperger's? Lighter on others? Add a new topic, such as a featured guest here and there?

To make it easy, I've positioned a poll up top ^  to the right --->. Can you see it? A few have told me it's been hard to find. But it's there. I'd love it if you would take a moment and do the talking. Let me know what you'd like to read, and I'll do my best to make it happen.

And if you've already voted? Thanks so much!

And thanks for stopping by. All this talking about chocolates is making me crave some. Drat.

Have a great week!

~Julie

Eye Contact. Or not. (That Perspective Thing, Again.)

After spending countless months transitioning from mom to entrepreneur, I finally decided to take a friend up on her suggestion to read a certain book series. Not for greater intellectual development, nor another, “how-to do this, that, and everything else,” read, but reading just for fun. And I’m so glad I did. What started out as picking up one book to read over winter break turned into hunting down an entire series.

The No. 1 Ladies’ Detective Agency series by Alexander McCall Smith have been such pleasant, quick and easy reads. And as someone keenly interested in the concept of “perspective”, the cultural differences from my own, stressed throughout the book, have given me much to think about. Namely, eye contact.

As an AsperMom, I’m all too familiar with the emphasis my present culture places on that thing called “eye contact”. We’ve had school and family complain how our daughter lacks it, and how that is a…problem. It’s also part of Asperger’s and quite frankly, in my not so humble opinion, there are bigger goals for her to reach than looking someone in the eye. Like grades. Or getting along with others. When to keep her thoughts inside, and when to express them. To learn how to live on her own.

But I digress.

I’m good at that.

Alexander McCall Smith’s series is set in Botswana, and he reflects on certain cultural expectations of the main character, Mma Ramotswe. One, in particular, had me. He writes of children and how they approach adults – with their eyes downward. Eye contact from a child to an adult is considered a sign of disrespect.

I mentioned it to Kristina, and she smiled. She abhors eye contact. It bothers her to no end. The thought that another culture discourages children from using it when greeting an adult made her feel…relieved.

To be honest, I am no expert on how eye contact is seen from culture to culture. But the thought that eye contact is not a universal social rule was…eye opening. (Bad puns, I know. They happen.)

Why is it that we spend so much time and energy teaching our kids to conform to social norms that, in the grand scheme of things, vary with the wind? How confusing is it to repeatedly practice “look me in the eye!” – only to visit another culture, and tell our aspie to disregard that “rule” for a moment?

Gosh, I’d love to devote time and energy to understanding all this. To further understanding of all of this. Of cultures. Of social rules. Of Asperger’s trying to make heads or tails of it all.

What do you think? Doesn’t it often seem that we make things more complicated and complex than they need to be? How often do we (unknowingly, even) "force" our culture on another, instead of making a conscious choice to understand it, instead? At the end of the day, what is it that really, truly matters as we interact with one another? And how confusing it all must be to our kids.