Autism Awareness at WDW: One Mom's View

[dreamsofdisney]

As we count down the days until our much-anticipated trip to WDW, I thought I would take a few minutes to post this in the hopes that it might increase awareness for my fellow DIS fans.

Maybe you’ll see us this July. You’ll look over at the roped off section for It’s Tough To Be A Bug, or Muppetvision 3D and see a Mom, Dad and teenage boy standing in the wheelchair accessible section. Or we’ll be walking down the EXIT ramp at It’s A Small World. Maybe you’ll roll your eyes and wonder why we’re trying to cut the line when we’re obviously not using a wheelchair. Perhaps you’ll see us going through the Fast Pass lane with a different looking card instead of Fast Pass tickets and think to yourself “What makes them so special?” or say, “Must be nice!” with a sarcastic tone of voice. After all, you can’t see any reason why we should be allowed to have a shorter wait. All children hate waiting in lines!

Let me introduce you to my family. I’m a 30-something-year-old Mom who recently married a wonderful 30-something-year-old man. Together, we are raising my bright and challenging 13-year-old son. My son is growing taller than me by the minute, has a deep love for Disney and Star Wars, a quick wit and great and sense of humor. He also happens to have Autism. You can’t see his Autism, but he lives with it every day. There are daily struggles to understand basic social interactions. He often responds inappropriately in social situations. He might yell out something, speak too loudly, or growl and say something rude if he’s feeling anxious. He’s been known to get very upset if he perceives people to be talking about him (although they’re probably not) or if he thinks they’re standing too close. You might see him talking (at length!) about the ride we’re about to go on. Many children with Autism can talk! But the slightest thing can set him off and we might need to make a break for the nearest exit. The long lines and close proximity to large groups of people is just too much for him. We’d love to be able to go during a less busy time of year, but he can’t afford to miss any therapies during the school year.

My son works very hard all year to get through the little steps that your child takes for granted. There are no play dates after school to ride bikes with the kids down the street. No lacrosse games or soccer tournaments. No ballet recitals or band concerts. No school dances or sleepovers. (Although some children with Autism do have these wonderful experiences, they are not feasible for my son.) Instead, he has Speech and Occupational therapies, countless doctors appointments, and attends a special school with social skill training groups and intensive, individualized education. Every vacation our family has taken this year has ended in tears after the stress of change has proven to be too much for him, and he’s had more meltdowns than I care to count. Our annual Disney trip is the one time that my son gets a break. Where he gets to be treated a little extra special and has his moment of magic.

So when you see us (or someone like us) on your next trip, please remember that you don’t know what it’s like until you’ve walked a mile in someone else’s shoes. And take a moment to appreciate your child and all of his or her special gifts. I know I’ll be doing the same with mine!

Thanks and have a Magical Vacation!

 

[angelbaby29871]

i wish you all a wonderful vacation and hope your son enjoys his magical time at the world.

 

[Stitch1404]

You brought tears to my eyes. We will be in WDW starting on July 23rd, maybe you'll see us. Just today I got a call from my sister that my 5 year old nephew was diagnosed with autism. We knew there was something wrong with him but now we have a name for it, and hopefully some ways to help him. I wish you and your family the most wonderful magical vacation, you sound like an amazing mom!

 

[gshumaker]

THANK YOU!!!!

Our DS15 has autism also and you descibe him and lots of other with autism exactly.

We will be visiting WDW in August and we get "those looks" too when we are waiting in the handicapped lines.

If only everyone could only see how special our kids are!!

 

[tacomaranch]

Have a wonderful trip. I have tried to explain a hundred times to our neruotypical parents who think it is great that we get "fass passed" that I would wait 100 hours in 100 degrees not to have to use our GAC.

I agree, walk in my shoes a day, any of our shoes and then folks would never say a word other than what I say to you...God Bless you and your family.

Have a wonderful trip.

 

[dreamsofdisney]

Have a wonderful trip. I have tried to explain a hundred times to our neruotypical parents who think it is great that we get "fass passed" that I would wait 100 hours in 100 degrees not to have to use our GAC.

I agree, walk in my shoes a day, any of our shoes and then folks would never say a word other than what I say to you...God Bless you and your family.

Have a wonderful trip.

Thanks! I always say the same thing to NTs. They get a "special pass" every day, whether they realize it or not. My son works hard every year, and this year has been especially difficult for him. Thirteen is a tough age for any kid, but seems particularly tough on kids with ASD. This will (unfortunately) be our last trip for at least 3 or 4 years, so we hope that it will go fairly smoothly. Just thought I'd try to increase awareness a little.

 

[3kidsmommy]

Thank you for putting in words the life I live every day with my wonderful 8 year old son who just happens to have autism! He, also, is verbal and really I think that makes his disability that much worse. People expect so much more out of him---than he truthfully can give. We went to WDW over spring break. He loved it. We utilized the GAC and got many, many glares. The CM at It's a small world was not going to let us go in the exit even though the GAC was clearly marked with the alternative entrance stamp. We informed her that my son would not be able to ride, then. She just glared at us and finally let us through. We told her we would love to be able to wait a million years in line, if she would be so kind as to tell us how to cure autism.
A note about your dh---HUGS to him from me. My dh is also my ds's stepfather and has been a wonderful asset to our lives. We are so lucky to have him advocating for my son...our son now. I hope you have a wonderful trip!

 

[mlwear]

Very well written.
I get tears, too, when I think of the challanges my son takes on like a champ. His summer "break" includes school, therapies and a private tutor from 8:30-4:30 five days a week. It's hard, but he prefers the structure. I would love a summer of relaxing at the pool, camps, playdates, even ME getting to spend time with my son, but this is our path. The ONLY time we get to take a vacation is mid-August: teachers get a break A break is hard on him, but last year at WDW we found this to be less true and he was able to truly enjoy his time off. Definitely something magical there and in reference to the OP, if it takes using the GAC a time or two so that he can experience that one week of joy, I hope others can understand. Autism is not the same for everyone or probably anyone. My son is also verbal. (Although I know many don't like the portrayal from Dustin Hoffman in Rain Man, his character is so very much like my son -- minus the savant counting thing and that DS is 8 and not middle-aged ).

Anyway, THANK YOU for posting.
BTW, seems like there are some awesome stepdads out there

 

[disneyelaine]

This was just beautiful and brought tears as well. Very moving.

We are another family you may see in July. July 21 to 25 at BWV. We don't spend much time in the parks, maybe 2 hrs a day tops, but Typhoon Lagoon and the pool we will be there!

 

[jennobrn01]

This is the first time I visited this board, and your post title stood out to me. Thanks so much for making me aware. May your vacation be full of joy.

 

[JohnnySharp2]

Our son is 9 and is also has Autism - we visit Florida from the UK every year.
Many of the things you say I can relate to.

 

[dclfun]

For the person who said the CM glared at them at Small World...I certainly hope you reported that person. I have received less than "welcoming feelings" before at the bus stops and upon entering attractions with my wheelchair... and my disabilities are visible. When you're supposed to be in the midst of the magic no one should receive less than magical service and a warm welcome at each attraction from a CM. There should be no question at all as to the use of your GAC. To the OP, thanks for writing such a moving story and I hope you have a wonderful vacation!---Kathy

 

[XYSRUS]

Everyone's human...if a CM wants to roll their eye at you, kill "em with kindness. That get them every time!

 

[XYSRUS]

To the OP...thanks for the eloquent explanation of what we go through every day. My son asked me just yesterday why he doesn't have any friends...breaks your heart. Thanks also for reminding me that I must never give up on telling those around us about autism..Last week I saw the Autism Speaks commercial...1 in 16,000 become pro baseball players...1 in 166 are autistic...you do the math. Who needs more funding?

 

[CHRIS_PRESTON]

DeamsofDisney,

Just come in from work and read your post, sums up what I've often tried to say.

Best Wishes from one mum to another.

 

[Grace&Carolinesmom]

Very well written. It brought back memories from our first trip to WDW this past May. Our HFA DD(5) has similar issues and we had her in a stroller (being used as a weelchair) and our GAC and we would often have people look at us, turn their head and say "no strollers allowed in here" as if we didn't notice it was them saying such a thing. Don't people out there realize the CMs let us in these attractions with the stroller for a reason? That we would much rather be in the "normal" line than calling attention to ourselves by entering in the handicapped entrance? Most of the CMs were great but there were the few, usually the younger CMs, that looked confused and kept double checking our GAC. I am seriously considering making a sign for our stroller for next year to help inform others. Maybe something like...Autism on Board (instead of baby on board ) or maybe just a designation like autismspeaks.org so they will be challenged to visit the website and become aware.

Again, thanks for the post OP.

 

[Rosie]

Hi dreamsofdisney

we are on the same wavelength! WDW is one of the very few places we have ever visited as a family that takes account of our needs. DS 11 has Asperger Syndrome and ADD and DD9 is NT.

DS can't bear people to touch him accidentally and his facial ticks become constant in lines. When we were at WDW he memorised the DVD about the top 7 attractions and recited it unremittingly. For our DD and other people standing nearby it was extremely irritating and the thought of standing there with him doing it for 50 minutes plus was not an option.

We love our DS unconditionally and even we find some of his Autistic symptoms hard to deal with. Our DD finds it hard too if we have to leave or split up becasue her brother has a meltdown. Thanks to GAC the meltdowns didn't happen in the Disney parks.

What you say is very moving and also very encouraging for all of us. Together we can challenge prejudice and have a positive outcome for our kids.

All my best wishes for your vacation.

 

[dreamsofdisney]

When we were at WDW he memorised the DVD about the top 7 attractions and recited it unremittingly. For our DD and other people standing nearby it was extremely irritating and the thought of standing there with him doing it for 50 minutes plus was not an option.

My DS does this every year, too! Word for word! When we'd return from our WDW vacation and family and friends would ask him to tell them about the trip, he's launch into the whole monologue! Funny and kind of amazing the first few times. After that...NOT SO MUCH!!

Thanks again to all of you who have posted words of support. I have always appreciated the steps WDW takes to help make our trip not just more enjoyable, but even possible! While it's true that many people are becoming more tolerant and aware, it only takes one nasty comment or off-color remark to hurt. I try not to let things like that get to me, but it's harder to explain those comments and looks to my DS who already is feeling very self-conscious about his special needs. (Not to mention, he already perceives that everyone is staring at him or talking about him, even when they aren't!) He realizes that he can't manage to wait in the same lines for some attractions and it bothers him to "stand out," so we try not to utilize the Fast Pass or Wheelchair Accessible entrances unless we know it's a necessity. I only hope that maybe a few people will read this post and remember our words on their next visit to WDW...or anywhere out in their community!

 

[SueM in MN]

He realizes that he can't manage to wait in the same lines for some attractions and it bothers him to "stand out," so we try not to utilize the Fast Pass or Wheelchair Accessible entrances unless we know it's a necessity.

A lot of people (us included) have posted that they use the GAC more as insurance - there if you need it.
For some people, just knowing they can use it gives them enough control to be able to manage a lot of attractions without it.

Also, knowing when to go is very helpful. There are attractions that are busy right away in the morning, but by afternoon you can pretty much walk right on. There are others (like most of Fantasyland) that are not busy if you can get to the park the first thing in the morning. Knowing those types of things can help you to do more without "standing out".

 

[SandrainNC]

I hope you have a wonderful trip!!! My son actually has Down syndrome, so it is an obvious special need, but my nephew who is 19 has autism. He went with us back in 2004 and did pretty well (he loved Rock N Roller Coaster!) Anyway, when we would be packed like sardines before a show in one of those preshow rooms, you could tell by the look on his face that he was VERY uncomfortable and he gets really snuggly with my sister when he gets nervous. Which of course, if people don't know, they would wonder why my older sister is dating such a young man! He also did not like the characters because masks bother him. He was hiding behind my sister on our first day at Epcot. By the time we left he had a picture taken with Mickey though!

Anyway, I hope you have a great trip and look forward to the report.

Sandra