Make A Wish trip to Walt Disney World 2012

On October 11, 2013, sweet Brayden was taken from this earth. Please consider donating a little to help pay for his funeral expenses and his sister’s medical bills.

In our ongoing efforts to shed light on the abuse of the special assistance Disney Parks provide guests with special needs, I thought I would highlight a family who has utilized Disney’s special assistance efforts and whose trips to Disney Parks would have been absolutely impossible without that assistance. Again, as in my last article on this issue, I ask you to put yourself in this family’s shoes and share our efforts to bring light to this issue by sharing our posts via social media. Our previous articles on this issue can be found by clicking here and here and because of readers sharing these posts, they have quickly become the fifth and sixth most popular posts in our five year history.

Cheryl, the mother who bravely wrote this article, is a friend of mine whom I’ve known since middle school. I am so proud to call her my friend and thankful that she has helped me with information for guests with special needs for both the blog and my book. In addition to being an incredible mom, she is the Southern California Ambassador for the United Mitochondrial Disease Foundation and fights tirelessly for those with mitochondrial disease. You too can help in the fight by clicking here.

Here is Cheryl’s story:

In the world of special needs, many of us bond together out of necessity. No one understands our world until you have lived it. People try to make you feel better by saying things like “I could never do what you do” or “you are so amazing.” Phrases that are meant to be a compliment, but somehow ring hollow. We are not super heroes, we are just people dealing with what life has thrown at us. Sometimes we do it well, and sometimes our “coping” comes across as ugly and inappropriate. But really, isn’t that true of all parents?

Just as there are normal parents who scream for attention when their child gets a paper cut, there are special needs parents who do the same. It’s one of the reasons I am very guarded when people ask me for advice on accommodations at Disney. Even the people I know in real life–people whose children have real disabilities. Is it because their kids aren’t sick? No. It’s because some people exaggerate their kids needs. And just like you, a parent of a healthy child, who cringes when that “mom” in your group exaggerates her kids need for special recognition of her talents – we cringe at the exaggerating mom amongst us whose child is “so much sicker” than ours.

What is my point? That abuse happens everywhere. The article about the rich mom paying a disabled person to use the guest assistance pass at Disney has brought a lot of negative attention. People are outraged that rich people are abusing the system. Some are outraged at the disabled person exploiting their own disability to make money in this manner. Sadly, I’m not surprised by this article. People, rich or poor, disabled or not, do bad things. There will always be a small number of people abusing what they can. Lets stop focusing on the bad, and instead focus on the good people and Disney does everyday. I would love to tell you an uplifting story. One that tells of the importance Disney – and their dedication to all needs – has meant for my family.

Although I grew up near Disneyland and was fortunate to have an annual pass most of my life, it was not something I thought I could share with my kids. Mainly because my kids have special needs and I just assumed Disney was another place my kids couldn’t experience. After encouragement from others that it would be okay, we found that Disney would opened up a whole new world for my kids.

On a more basic level, it was a place they could eat. I know this sounds silly, but it’s not. My kids were (are) allergic to a lot: milk, soy, wheat, eggs, chicken, tuna, and more. They couldn’t eat anywhere but at home. However at Disney we discovered restaurants with rice pasta and rice bread hot dog buns, and chefs that not only understood allergies, they understood cross contamination and why safe foods need to be cooked on a “clean” grill. The chefs are amazingly informative and absolutely willing to do whatever it takes to bring smiles to the faces of kids with limited food options. This meant my kids finally had a normal life experience – eating out.

Then there is the first aid staff, always willing to help out or give us a place to deal with all my son’s medical needs. When he was younger it was a place to give him tube feeds. As he got older it was a clean and quiet place to deal with IV meds, IV nutrition (TPN) that needs to be refrigerated, or just a place to lay down for a few minutes without sensory overload.

Fun at the Jedi Training Academy  back in 2010 when Cheryl’s son was still able to enjoy at day at Disneyland.

There are also all the Disney standard procedures, set up to accommodate without special requests. There is ample handicapped parking in the structure, wheelchair access at the tram or special wheelchair vans to get you to the park. Within the park there are wheelchair lines for the rides that can’t accommodate the chairs, a special viewing room for the submarines, wheelchair areas for Fantasmic! and World of Color, rides that can accommodate a wheelchair on the actual ride and really amazing workers every where who are always looking for ways to make everyone’s day a little more fun.

Disneyland 2010

And of course, there is the now infamous guest assistance card. It’s not something we used in the beginning. Back then, my son did fine as long as he sat in his wheelchair. So we had no idea a card even existed. Over the years, his needs intensified and the card was a lifeline to us. City Hall works really hard to figure out what the person really needs, and how to help you meet that goal. It is NOT a free pass. It should not be sought to use merely for a “front of the line” pass. It is a way to even the playing field so everyone gets to experience Disneyland regardless of their special needs.

Because of all the amazing accommodations, my son experienced a few years of incredible fun at Disneyland. He spent as many weekends as possible riding rides, eating food and enjoying the same experience I did as a child.

Of course, things weren’t quite the same. It takes about an hour to get him set up in his wheelchair, all his meds and needs packed into the chair, and then transported in his chair to the park. By the time we entered, we would spend another 30 minutes getting his pass and by that time it would be time to deal with meds or feeds. Typically we would make it on two or three rides, eat dinner and discover he was too tired to do anymore and so we would head home. That’s only two or three rides in as long of a day our son could handle and that was only possible because of Disney’s special assistance. These were experiences my son loved, and for a few years, it was the only consistent thing he would tell everyone about.

Make A Wish trip to Star Wars Weekend in Walt Disney World in 2012

Last May, my son was granted a trip to Disney World for his Make A Wish trip. Unfortunately, his health was so bad that the trip wasn’t exactly what we had hoped. Despite every accommodation Disney could offer, he was barely able to enjoy it. He spent two half days at Hollywood Studios and the rest of the week hotel-bound. His once in a lifetime trip sadly was not what we wanted, because he was just too sick to experience it. However he still has fond memories because to him – Disneyland or Disney World – is a place that allows him to be just like everyone else. For a few hours and when he can tolerate it.

Sadly, our time at Disney is over. Our family’s last annual pass expired last month. We didn’t use it once in the last year because our son spent more than half of the last year inpatient. When he is well, he still can’t sit because of

Make A Wish trip to Star Wars Weekend in Walt Disney World in 2012

physical pain. We had offered him a special birthday trip to Disney with his favorite cousin last September. (He was in the hospital for 6 weeks on his birthday, so it was an incentive for once he got out.) He has still not gone on that trip. He wants to go, but he knows it would require sitting – something he can’t do. Our last hope was a reclining wheelchair, something insurance says is luxury and denied. If we ever get him healthy enough to sit, we will try that one final birthday trip to Disney as long as the guest assistance pass still exists. And hopefully, he will tolerate a few rides before he’s exhausted. Hopefully he won’t be delayed by numerous healthy people abusing the system. I know that if they knew his story, they would let him go in front of them, but from looking at him, you have no idea that he is still here – on borrowed time – as his terminal disease slowly eats away at his body. Instead, you may assume he is a child abusing the system. I hope that doesn’t happen. I hope he gets that final Disney trip before his disease takes him from this earth, and I hope you remember his story, and how much Disney means to him. Remind your friends that waiting in line at Disney is a privilege many people can’t experience. Please don’t take that option away from our little heroes.


Thank you, Cheryl, for allowing the Babes In Disneyland

Cheryl and her beautiful children in 2012.

community to understand your family’s journey and what Disney’s special assistance has meant to your son and family. 

Cheryl’s son is once again in the fight for his life and was air lifted back to the hospital after a very short stay at home. We ask that you keep him and his family in your thoughts and prayers.