by Kathy Kelly
Help publish this special needs travel guide for families with autism; because the magic is for everyone!
About this project
Every parent dreams of the “perfect” family getaway — a chance to escape the daily routine, relax and have fun together. But for many parents of children with Autism Spectrum Disorder, planning a classic family vacation is anything but relaxing! When one or more of your children has autism it affects your family in a pretty significant way, and that includes how you travel and vacation together.
My name is Kathy and I’m Mom to a 17 year-old who has autism and a 19 year-old who does not. I’m “using my words” and asking you to help publish a book that I am writing; a special-needs guide for autism families traveling to the Walt Disney World Resort.
Why Walt Disney World?
Because the Walt Disney World experience, while potentially over-stimulating, can be a positive and engaging one for children on the autism spectrum, many of whom develop a particular fascination for Disney characters, songs and movies.
I’ve seen how therapeutic Walt Disney World has been for our family and I want to educate and inspire parents who worry if their children with autism would be able to tolerate, much less enjoy a theme park vacation.
That’s because children with autism have challenges that make vacationing difficult for them — and for the rest of the family. They’re often hyper-focused on daily routines and rituals; becoming anxious and irritable when those routines are disturbed. For kids with complex sensory issues, a visit to a theme park bombards them with sights, sounds, smells, and other sensations that can quickly overwhelm them, resulting in very loud — very public — behavior meltdowns. It’s no wonder that parents are apprehensive!
But here’s the main reason I decided to write this book now:
Recently, the Disney Parks made sweeping changes to their system of accommodation for guests with invisible disabilities like autism and no longer offer reduced wait time for rides and attractions. This has been a huge source of anxiety for autism parents.
Some people say, “If your child can’t tolerate loud noise and waiting on lines, then perhaps a Disney vacation isn’t for you.” I say that’s B.S.! Talk about exclusion thinking!
If I’ve said it once, I’ve said it a hundred times: that little card isn’t a magic wand, it’s just a tool,one of many we can use to make the experience more comfortable and enjoyable for our children with autism, their siblings and yes, even for ourselves!
Traditional guides offer excellent information for the general public, but they barely touch upon the issues and concerns of travelers with developmental disabilities. Sifting through dozens of specialty websites and blogs for information that addresses your concerns is not only time-consuming, but frustrating.
This is some of the actual advice you’ll find:
“My recommendation is to try to stay either on the Boardwalk or the Monorail if you can afford it.”
Well, we can’t afford it! ($576 – $866 per night, standard) Now what?
“Before your trip, practice waiting in line.”
How is that going to help? My son doesn’t understand the concept of time and lines always upset him!
“Bring a sensory toy, like a stress ball.”
A stress ball? A STRESS BALL?? A whole bucket of stress balls isn’t going to prevent my child from having one of his “monster” meltdowns!
Forget it… it’s not worth it… our family’s never going anywhere on vacation ever again…
That’s exactly how I felt when our youngest child was diagnosed with Autism in 2001. He had so many sensory issues — so many disruptive behaviors — that family outings were just too overwhelming for him and much too stressful for me.
Over time I came to realize that by avoiding potentially awkward social situations, I was excluding my son — and by extension, my daughter — from living fully in the world. I had dreamed of taking my children to Walt Disney World since before they were born and yet I would not attempt it because of my own fears.
So, after much preparation, our family finally visited “Mickey’s House” in September of 2003. We had our ups and downs that week, but the important thing was that we were there and making memories together, as a family.
We’ve been vacationing at Walt Disney World almost every year since…
How will parents use this book?
You may have heard the expression,”If you’ve seen one child with autism, then you’ve seen ONE child with autism.”
Well, when I explain autism as a “spectrum disorder” to someone who isn’t familiar with it, I tell them that autism is like a salad bar: every person on the spectrum has a different combination of symptoms and behaviors — and in varying amounts. No two “plates” will ever appear exactly the same!
That’s why the book is organized like a salad bar — take as much of the stuff you want and/or need and leave the rest. (Hold the raw onions, please!)
Oh, and one more thing — I am not claiming to know the secret of a 100% meltdown-free Disney vacation for kids with autism. (Anyone who says that is full of it!)
What I am doing is taking everything I’ve learned over the past twelve years and combining it with the collective wisdom of several Disney-loving autism parents. Then I’ll sprinkle it with advice from special-education teachers, behaviorists and therapists to create a guide that will give readers exactly what they’re looking for, whether it’s their first visit to Walt Disney World or their fifth. And by backing this project, you can take part in it’s creation!
Readers will learn:
- How to prepare themselves and their children with Autism for the intensity of the Walt Disney World experience, both mentally and physically
- How to involve your child’s teachers and therapists in the preparation process
- How to successfully plan for the logistics of a Walt Disney World vacation with their child’s special needs in mind
- How to manage specific sensory, behavior, communication and safety challenges while at the theme parks
- How to assist teens and young adults with Autism to cope with the demands of a Walt Disney World vacation while fostering their independence
- How to balance the needs of the entire family, including typical siblings and grandparents, with the needs of the child with Autism
- How to plan for and request dietary accommodations for Gluten-Free and other special diets
- How to access theme park services and accommodations, in particular, the Disability Access Service Card
- How to tour Walt Disney World with a Trained Autism Service Dog
- How to take advantage of local resources available to families with Autism
- And much, much more!
I know that I can help other families with Autism!
As creator and host of an unofficial Disney podcast and blog called Special Mouse, it has been my privilege to serve as a resource for Disney travelers with special needs, health challenges and disabilities for the past three years. My philosophy is one of inclusion; summed up in the show’s tagline — “the Magic is for everyone!“
Here’s what people are saying:
Funding Request and Goals:
Writing a book is the easy part. Getting it published, printed and into readers’ hands is a bit more involved and rather expensive.
I will be using the money from this campaign for independent publishing services with CreateSpace (an Amazon company) to produce a high-quality book, available in both Print and Kindle formats.
Professional Editing = $2,000
Layout and Design, Interior = $350
Layout and Design, Cover = $600
Graphic Illustrations = $400
Kindle Conversion = $140
International Standard Book Numbers (ISBNs) = $200
Professionally formatted back-of-the-book index = $1,000
Backer reward fulfillment = $3,500
Basic Cost = $8,290
Plus the Kickstarter Fee (5%) = $415
Plus the Payment Processing Fee (3%) = $249
Total = $8,954
Rewards that do more:
By supporting the book’s publication, you can help children with Autism, their siblings and their parents to discover the simple joys of making family vacation memories — together. But, that’s not all!
Most of the rewards offered in this campaign will be made and sold by people with autism or their parents. So, with each contribution, you are also directly supporting people living with autism.
- The Center for Independence in N.J. provides Real Life Choices and Self Directed Day Services for adults on the Autism Spectrum.
One of the services provided is a multi-tiered vocational program that offers adults with autism internships on-site and in the community, entrepreneurial enterprises and supported employment.
- Several of their talented artists will be creating and selling handmade book marks for this campaign!
- Safety ID Stickers for Kids are created and sold on Etsy by a fellow Autism Mom.
- These double-layer stickers hide your child’s personal information while remaining highly visible.
“Because my son has autism and my daughter has social anxiety I knew I had to get our cell phone numbers on them in case of an emergency when we travel; both kids wouldn’t be able to communicate their allergies or how to contact mom and dad if we were separated. So I came up with fun stickers that my kids could wear and give me peace of mind for their safety.” ~ Heidi W.
- The Bonus Book reward is a memoir by Ron Miles whose son with Autism rode Snow White’s Scary Adventures in Walt Disney World thousands of times over the course of ten years. With the help of some very special Cast Members, Ben was the last person to ride the attraction before it closed permanently on May 31, 2012.
- All proceeds from the sale of this book go directly to Ben’s special needs trust fund.
- Completely finished seams and hems
- No glitter or itchy underskirts or fabrics
- No buttons or ties to frustrate little fingers
- And are fully machine washable
- Costumes for girls and boys
Please Note: I am not affiliated with, authorized or endorsed by, or in any way officially connected with, The Walt Disney Company or Disney Enterprises, Inc., or any of their affiliates. All trademarks, service marks, and trade names are proprietary to Disney Enterprises, Inc., its subsidiary, affiliated and related companies, as the case may be.
Where do I get to choose if I want a digital or printed version of the book?
After the campaign has funded I will contact you via email and you can indicate your preference!
Risks and challenges
This is my first experience with self-publishing, so it is possible that there will be bumps in the road and it will take longer than expected to complete the project. I’m a special-needs mom, though, so I’m accustomed to taking all kinds of bumps in stride!
I plan to have the book available by November/December of 2015. I purposely chose to self-publish with CreateSpace because Amazon is a well-established company. With this program books are printed and shipped on demand, therefore I do not anticipate significant issues with fulfillment.