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!

Another Controversial Special Needs School Story

I’ll admit it. I have a bad habit. Especially on blogging days. Our days start so early, a mug or three of coffee help me get to lunch time. But this morning, a quick glance at the news did the trick. It was another story of yet another Special Needs student and a controversial situation involving the school.

Sure, these stories always get to me, but this one still has my blood pumping. First, the snapshot. Literally. According to WCNC.com, a special ed teacher placed a student into a cardboard box in order to calm him down. (Click HERE for the story and the photo, by Dianne Gallagher.) A fellow parent took a photo of the box, asked the teacher about it – then relayed what was learned to the student’s mother.

Believe it or not, the box is not the part that has me so exasperated. Yes, “exasperated.” This post isn’t about debating the alleged “merits” of being wheeled into a cardboard box. Or the psychological damage doing such may cause.

(And, for the record, the school did acknowledge that putting a child inside a cardboard box is not an approved form of discipline. Raise your hands if that admission is of surprise to you. Yeah, thought not.)

This is about school.

What irks me to no end is the lack of communication between school and home.

Listen, does this story sound familiar to you:

Student: “Guess what happened to me in school today?”

Mom: “What?”

Student: “They zipped me up in a bag, including my head.”

Mom: “What do you mean, ‘zipped you up in a bag?’ ”

Student: “They put me into this body bag, and zipped me up. Don’t worry, mom, I could see out of it and breathe just fine.”

15 Minutes in the DARK, by Julie Clark

For those who have read my book, you’ve heard it, and it was actually an amusing tale, but we are talking about a proven method; the Body Sox™. We knew OT was around the corner, we just weren’t alerted to when. So, although this was a surprise, once things were explained everything was good to go. But for many families, the converse applies. You may even be one of those families. (If so, please share your story in the comments below.) It is never acceptable for the school to administer unapproved treatments to a child.

Let me repeat.

It is NEVER acceptable for the school to administer unapproved treatments to a child.

I’ll be honest, I hear a lot of teachers complain about parents, and, honestly, many times they have a point. We can be some of the best micromanagers on the planet, while others think it’s up to the school to raise the kids. Both make a teacher’s life difficult. But I’ve also heard teachers admit they will treat a child as they see fit, whether it’s on the plan or not, whether the parents (or even doctors!) approve or not. It infuriates me to no end, and these particular individuals have their minds made up, and a level of arrogance that astounds me.

Of course, most teachers do not act as Jacob’s teacher did, but I want you to watch this and know that some do. And this happens all over the country – and not just my country. Thanks to modern technology, we now have the ability to document these instances for those who doubt, thinking we’re just paranoid parents.

But there’s the other piece of this story that has me, as we say down South, “madder than a hornet.” According to the mother, the principal was not only familiar with the incident(s), but knew that….get this…the mother did NOT know. Can anyone else infer, then, that the school not only knew, but made a conscious decision NOT to inform the parent? Somebody, please explain this to me. If I am wrong, I will amend this post.

If the school determines something unacceptable has happened to the child, I firmly believe the school has an obligation to contact and inform the family of the incidence(s) in a timely manner.

Let me repeat.

If the school determines something unacceptable has happened to the child, I firmly believe the school has an obligation to contact and inform the family of the incidence(s) in a timely manner.

This school failed on two counts.

What’s the phrase? Epic fail?

Watch the video. Pay attention to the mom as it nears the end. Feel her emotion. Have you been there? Are you concerned that will be you someday? Joy Amatuccio is right. When we send our children to school, we expect they will be taken care of, “100%.”

Take this video as an alarm. If you see a child being treated in an unacceptable way, speak up. If you hear teachers go on about how they go “off plan” because they “know best”, question them, and be prepared to go “up the ladder” if need be. And I’m talking to fellow teachers, too. Do what’s right. Help kids, especially those who are not in positions to help themselves, as that’s what we are here for – to help them.

Work to keep the lines of communication open between home and school. That’s right, I said, “work”. It is work. And it takes both sides for it to succeed. There’s no reason to go in with a list of hard and fast demands, as that’s the surest way to start off on the wrong foot. However, it is perfectly acceptable, even necessary, to be involved in your child’s time at the school, to get to know the school. To demonstrate a willingness to work together, as a team.

Life isn’t a video game, a reality TV series, or best used for social media fodder. It’s meant to be lived. To grow, to learn, to help one another cultivate our potential. And we all have potential. Every. Single. One. Of. Us. 

Please, if you agree, share their story.

(This post is dedicated to all the parents who have lived this, and to teachers who stand up and do the right thing in very difficult situations. You are amazing!)

How Far She's Come; A Look Back

College. A word that drums up so many memories for both my husband and me. We each had fabulous experiences at our respective institutions. For me, my “safety school” turned into an incredible place for growth as my school of choice remained financially out of reach.

College. A place I’ve considered returning to, pursuing a Master’s or a different degree, when life isn’t consuming me.

College. A place that is no longer about me, but my daughter.

This week marked a milestone in my family’s life. I’m not an emotional person by nature. A mix of acrid life experiences and a driven personality allow me to see life objectively more so than most women, which is why shows such as soap operas, reality TV and the Hallmark Channel are as good as “Greek” to me. But in writing this, I’m finding myself pausing, holding back a tear or two as I gaze at a picture of my then three year old Aspergirl sitting askew on our mantel.

My goodness, time does fly. Whisps of blond hair, never to be contained, flowing as she darted from place to place. Knowing she’s about as strong-willed as her mother with a lack of social graces, wondering what on earth life would look like once she hit middle school. But middle school was “so yesterday,” and nothing like we ever pictured it would be. 

Thank goodness it wasn’t as her preschool teacher envisioned it would be. (Juvie my eye!) Staring at the same child, she envisioned a teen in trouble, with a record to make a mom wince. But the record she is acquiring makes her parents proud. Her grades are strong, and college mail confirms so.

Looking at her photo, I can’t believe how far we’ve come. Stimming in the hardware store. Feisty displays of personality in elementary school. Sensory overloaded times that try the most patient while making her life a living hell. Add to that ongoing social exclusion that rips a parent’s heart to pieces.

Now we’re halfway through high school, and she’s become her “group’s” party planner.

“Group” as in “group of friends”. She has friends. Real friends. And she’s had many of them since…middle school. That thought, alone, gives me pause.

This week, we attended an event where several colleges presented information on their respective institutions. It still hasn’t sunk in, which I’m sure is the norm with most parents sitting through the first college program! As much as we want our children to succeed, do we really want them to leave the nest? Regardless, with each month that passes, it becomes increasingly clear that she will be able to go to college, and live on campus.

Living Tree - Life amidst life's rushing waters

This is huge.

Although we never shared the dire tone of Ms. Preschool, we were also realistic in that Kristina had a ways to go before it would even be a consideration. Years passed where she would head to the bus, leaving the door unlocked – and wide open. Sensory concerns had us wondering if she would ever be able to cope in certain settings. Now, she attends movies with friends, and has a plan of action for times when her sensory world is overwhelmed. She’s involved in household chores and volunteers her time in the community.

So now, I sit and type, glancing up at the then lilac dressed child, envisioning someone who is setting herself up for college. No, it wasn’t an easy road. Our family did a ton of hard work to get to this point. Of the three of us, Kristina did the most work of all. It’s paying off.

The story is still being written. Grades and tests are far from set. And then there is continuation of community service and other components to round out her teen years. There remains a lot to be done.

My daughter has Asperger’s Syndrome. My daughter has Autism. My daughter is fully capable of contributing more to the global scene than most of her peers. And she will, in her time, in her own way.

Life isn’t often what we picture it to be. The clouds lining today’s sky may not forecast tomorrow. Envision a better life for your child. Know in your heart she will succeed and beat your wildest expectations. Tune out the naysayers while being sure to listen to those whose wise wisdom may pinch in the moment. Be willing to make hard decisions. And, most of all, have hope. These kids are capable of so much more than “they” will ever think possible.

And grab a box of tissues, for when that moment arrives, when she’s whittling down the list of schools to apply to, it’s nothing short of overwhelming.

~Peace

Julie Clark to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012

Without Asperger's, I'd be sitting here - or who knows where - with a closed mind and a limited view of pretty much everything related to autism. Before my daughter was born, I had a very restricted understanding of what autism was, let alone knowing it encompasses a spectrum.

My daughter was born with Asperger's Syndrome, an Autism Spectrum Disorder, and she has changed my life for the better. Also known as the "star" of "Asperger's in PINK", she is in the process of touching the lives of many, helping families understand what it means for a young child and her family to walk this path.

Could I sit here and complain about the lack of playdates, or coffees with other moms when she was younger? Or the hash glares and unkind words muttered and uttered about my daughter and her family? Sure. Everyone can complain about anything if they set their minds to it, can't they? Don't they?

Heck, my kid can just as easily complain about me. She's a teen. It's wired into teen DNA to gripe and want to "fix" mom, isn't it? Moms have an uncanny ability to embarrass their children in public, simply by saying something along the lines of, "I love you, sweetie pie!"

Especially if the "child" is old enough to drive.

(We've all been there in some form or another, haven't we?)

But Asperger's is an integral part of my life. It helps me rethink my wording. It causes me to view the world a bit differently. The way my daughter interprets the world around me is fascinating, and her intellect is astounding. If anything, it shows me how important it is to be who we truly are meant to be, as opposed to what "they" (whoever "they" are) tells us who "they" think we should be.

And that, is a good thing.

If you are reading this and wishing you did not have Asperger's, it's ok to take time to understand what it all means. But choose to listen to the myriad of voices who also have it, who understand why it can be a positive thing. There are many.

And if you ask my daughter, in particular, if she had the choice, would she remain an Aspie, she would say, "yes". 

Trust me, I have, and that's what she told me.

Us vs Them. Again.

On Friday, April 27, I will be a guest on the Autism Women's Network blogtalkradio.com program (see widget to the right --->). It truly is an honor. As anyone can see from viewing my blog, autism, including the "pink" end of the Autism Spectrum, is very important to me. Understanding it, increasing awareness about it, accepting those who are on it, and encouraging everyone to see each other as people.

Yes, people.

Unfortunately, there is often too much talk (regarding those on the higher functioning end, such as Asperger's) about "fixing them".

Or, should I say, "fixing them".

Them

I never have liked that word. It draws a line in the sand and separates us into "us" vs "them."

And, if you'd ask my daughter, she'd say hers is not the group "in need of fixing".

And why does everyone need "fixing", anyway?

Personally, I'd like to see each other as, well, each other. Neighbors. Coworkers. Daughters. People who have so much to contribute to society, if only "us" would let "them."

From time to time, I ask folks on my book's Facebook page  or Twitter what it is about Asperger's that makes them happy. For many, it is an increase in perspective and a new way of looking at things. For some, intelligence. For others, it can be as complex as having help embedding some sort of technological contraption into some unpronounceable program, or as simple as pushing us to cut through the "fluff" of so many things in order to see the true picture. These answers come from both Aspies and their parents.

As Autism Awareness Month rounds out, let's choose to understand each other. To agree to disagree at times. To learn from each other. (Heaven knows my kid teaches me so very much!) To listen, truly listen to each other, whether or not "someone uses eye contact and appropriate inflection". Listening to different voices and perspectives does wonders to shape our own, doesn't it?

Where the Heck Have I Been?

Wow, sometimes, time flies. Other times, it runs away from you so quickly, it's as if you've entered a time warp.

Such has been late February through today.

2012 started with grand dreams, big plans and a vision that meant a full push forward on many fronts. Speaking engagements, new writing, new book work, growing my small business, and keeping track of a teen who is growing so fast I want to put my head in the sand.

Then February ended with a bang. Literally. As my regular readers know, my husband suffered a subarachnoid hemorrhage - bleeding on the brain. Thankfully, he is doing rather well. However, the recovery process has been quite slow, and left us reprioritizing so many things, as is often the case for anyone who has undergone anything similar.

Let's not forget writing one of THE most boring blogs of my life. Boring, but practical and important, nonetheless.

But it's time to pick up where things left off, moving forward with a new perspective and an increased drive.

So, what's on tap for the remainder of 2012? Here are the grand plans, and a few announcements!:

Photo of South Hall, Geneseo, from April speaking engagement

• Continue speaking on Asperger's and Autism Spectrum Disorders
• Interested in having me speak? Send me an email and we can go from there!
• Work on a second book
• Changing the name of the fiber side of my small business from "Julie Clark Art" to "Wave & Willow, a Division of Julie Clark Art". (After all, it's a bit of a stretch to call a tote a piece of fine art...)



Wave & Willow

• As far as my Etsy shop is concerned, it's just a name change. Typing in "Julie Clark Art" to find it should still work for a month or more.
• Watch for a new website for Wave & Willow to emerge, with a focus on giving back - but it will be a bit. It will be a combination of my practical and fine art pieces with an emphasis on Autism Spectrum Awareness, as well as sustainability. Stay tuned!
• The Facebook page will remain under "Julie Clark Art" as "Wave & Willow" is simply a division of my small business.
• For the remainder of April, a minimum of 5% of ALL sales from my Etsy shop will go to benefit the Autism Society of North Carolina!

  

  Ok, so it's sideways...

•  I've got a bran' spankin' NEW author page on Facebook! Click HERE: Author, Julie Clark to find it and "like" it.
• This is where to go to find information about upcoming interviews, speaking engagements, blog posts, as well as personal bits from time to time.

And, of course, there's more. Thanks so much for being a part of all this! Wishing you the best for the rest of 2012 and beyond!

~Julie

Celebrate World Autism Awareness Day!

That’s right – celebrate it! Yes, there are challenges. Yes, the more impaired the person, the more the need for services. And, yes, I fully understand wanting the ability to verbally communicate and take care of oneself.

But…

There ARE things to celebrate about someone you love who has autism.

Ask some with Asperger’s, if they had the chance, would they become neurotypical? Some might say “yes”. My daughter would say “no”.

I know, because we’ve talked about it, and she doesn’t think she’s the one in need of changing.

Today, my family celebrates autism. Having a child on the spectrum is making us better people. It is forcing us to see the world through another lens. For most with autism, it’s a blue lens, while for is, it’s pink.

I could go on – and I have. But you already know that.

We often spend too much time talking about what’s “wrong”, what needs “fixing” and what needs to be “modified”. It can really suck the energy out of us  to think like a repair person, with the individual getting lost in the middle of it all, right?

So, let’s celebrate our kids, ourselves, even. What do you love about the special person in your life who has autism? Do you have an Autism Spectrum Disorder? What is it you like about being on the spectrum?

For my daughter, it’s complex. Oft time, she’s living in a world where others chose to need more social skills that she does (ironic, isn’t it?), but knowing that no matter how hard it can be at times, she is who she is supposed to be.  A person with Asperger’s. A person who deserves to be loved, understood and a friend.

Are you wearing blue today? We are. And we’ll probably stick a bow in Mr. FrouFrou’s topknot, too.