It’s October 7th, two days until Disney rolls out its new program for guest assistance, and the disabled community is waiting with baited breath. They have rolled out a new Resource Guide for Guests with Cognitive Disabilities Including Autism Spectrum Disorder. Disney was caught off guard (extremely unusual, as Disney seems to always be a step ahead of the theme parks and their issues) when news was leaked that they were looking at changes to the program that helps special needs families enjoy the Disney parks as best as they could. The new program announcement has created quite a buzz in the special needs community, and speculation on how it would affect these families, even the ones who have been selected for Make a Wish and other wish organizations.
There have been so many wonderful posts and blogs(and some not so wonderful comments) about the GAC passes. For those people who haven’t heard of these, GAC stands for Guest Assistance Card, not some sound your cat makes before gifting you with a hairball. They were intended to help those guests and their families have a magical experience.
I’m throwing in my perspective. Our daughter, Sophie, has a rare disorder and is medically fragile. Medically fragile and lives with a life-threatening condition. You see, there are so very, very few places that Sophie and our family can go to have fun. Together. Most days we go by the “divide and conquer” rule- one parent with one child. As Sophie’s brother gets older there is less need to take care of him in a physical sense, but he still needs the attention (sometimes more than Sophie) and love doled out on a regular basis. But especially for Sophie, and for all of us, Disney World truly is “The Happiest Place On Earth“.
When planning a family outing here is just part of the mental check list (ok, sometimes it actually is in the form of list after list after list…) that I go through:
–Is it accessible? TRULY accessible? Not just a curb cut here, a widened door there. I’m always amazed at the “accessible” stores that then fill their aisles with more things, to the point that a walking person has trouble navigating. Throw up a grab bar in the bathroom and call it a day. I know it’s hard to retro-fit older buildings, I spend more than enough time analyzing everywhere we take our daughter, sometimes visiting ahead when I can to access it personally.
— Is there a place to get Sophie down on the floor to change/catheterize/stretch without worrying about typhoid or MRSA, has it even been washed recently, or some other nasty? A place that is private and clean and big enough to house her chair and everything we need?
— Will it be cool enough for my daughter whose autonomic issues prevent her from sweating/cooling properly, or conversely stay warm enough? Is there shade? Is there air conditioning? Ignoring these issues can create life-threatening overheating. She cannot stay out in the sun too long, and sunscreens over 15spf will suffocate her skin creating more autonomic issues.
— Did I bring and do we have room for all of the medical equipment, pumps, clothing, etc ? Do I have back up, and how close are we to it when we need it?
— Is there any way we can bring a nurse or an extra set of hands who knows Sophie so I can have a little fun too?
— How much “down time” will we have? Sophie’s sensory needs make waiting very difficult.
Disney. Ah Disney. They have thought of just about everything. Bless those wonderful cast members, who always are helpful, always smiling. The first aid station and staff are our lifeline- a place to go to do all these crazy things we have to do for Sophie, to keep her meds safe and cool, or to just cool off, take a break. And these tasks take a huge chunk out of the day’s activities.
If you followed us through the park you would see this: Sophie becomes the tour director: with some suggestions and guidance she decides where we will go next. The various parks are listed in her talker, similar to the maps that are given out. She is in her element. She is queen for the day. And we have the smiles and pictures and memories to show for it. Many of the rides she cannot go on- it’s just too complicated with all of her lines and her oversized wheelchair. Sophie doesn’t eat, so going to the various eateries would be a lesson in how to ruin other’s memories. We do the fast and easy route, or tag team while one of us entertains the princess. Waiting in lines is another toughie. Will there be shade? Will it be too hot? Is it really worth the wait and if Sophie really would enjoy it? Do we have enough time to then get back to the 1st aid station to give her next medicine, to cath her, to cool off? She has a sleep disorder and with all that needs to be done/packed we get to the park by around 11am, and if we are very lucky stay till the fireworks.
Back in the days when we had a little money, we used to “invade” my aunt’s home that was close to the parks, set up camp, and then go to the parks for a day or two. Yes, we were lucky to do that. It was a huge expenditure that we didn’t take lightly, and at times probably couldn’t afford, but there is so little from which Sophie gets pleasure. Just to see that unforgettable look on her face when driving under the Walt Disney World sign, the excited words “Mickey Mickey Mickey” she presses on her talker while crossing into the Magic Kingdom, her body wiggling in delight. Knowing what she has had to endure over the years, you would do it too. We don’t know how long we will have her. No one knows this, but with a medically fragile child every day is a gift, and every chance you have to make them smile with pure joy is a goal.
Those wonderful folks at Make A Wish (and I’m sure other wish organizations) get this. More than get this, they live and breathe it along with us. Going to Disney is one of their most requested wishes, and for good reason. We waited almost too long (the age break off is 18, Sophie was turning 18 the year we were pushed to submit a wish.) We thought that wishes were only granted to those that were terminal, to find out that you must have a life-threatening condition. They took our requests with patience and more than a little understanding of the huge task this would entail to make the trip more than special. They took it up a notch, like 10-fold. We will be forever grateful for all of the memories. Something to tuck away and smile about when Sophie’s journey is over. And I’m positive there were a lot of reassurances to Make A Wish from Disney when this pass information hit the internet. MAW was surprisingly quiet, but I think they knew that Disney would make sure that the experience, the magic, would still be there for those families.
We will never be able to experience Walt Disney World that way again, not because of the changes, but because no one does it like WDW, Give Kids the World and Make A Wish together. It really is Where Dreams Come True.
We are forever changed from that experience. The happenstance of meeting a family with special needs who has taken us on a journey of better health for Sophie, a last moment with my Mom before she died, a much needed side trip with a treasured Aunt who passed away this Summer…so many memories to hold, and we will Remember the Magic.
We will go there again. Not sure how, not sure when, but we’ll find a way. Like the clock in the belly of Peter Pan’s crocodile, time is ticking away. As Sophie’s health has stabilized for now, I can hope.
And so the folks at Disney now have a new plan with a new name and some additional things in place to hopefully minimize the abuse that was happening. I try to believe there is hope that most people want those with special needs to live life to the fullest possible way. To not look at these systems as privileged treatment, or worse, have the attitude that “regular patrons” should be able to be “taken to the front of the line” if they can get away with it. There will always be those that take advantage of the rules. Let’s hope with some attention drawn to it, there is less abuse. To be gentle, respectful human beings.
I’ve got friends who are going to the parks this next week. They are understandably worried that it won’t work for their families. Disney President, Meg Crofton says in her letter that they will work with families and their special needs members individually to make it magical. And I believe in their magic.