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The Disneyland Measles Outbreak: How do I Protect my Family?

It seems as though the American media cannot get enough of the “Disneyland Measles” this week, and why not? Eighty-five cases of a highly contagious disease confirmed in seven states — all connected to Disneyland, “The Happiest Place on Earth” — makes for a tantalizing story. And there’s nothing that grabs the attention of an audience and polarizes it quite like pointing the finger of blame at already unpopular groups: the anti-vaccination movement, undocumented immigrants, and an ineffective public health system. And really, how many people – fans included — can resist poking fun at the giant Disney Company by sharing photo-shopped images of Mickey Mouse covered in red dots?

 

disneyland-measles

 

Of course, this recent outbreak is not Disney’s fault, although there are multiple reasons why Disneyland/DCA is the perfect incubator for it. The guests who contracted and spread the measles all visited during the weeks surrounding Christmas, when the theme parks are often filled to capacity with visitors from all over the world, including places such as Mexico, Europe and Asia where measles is still a problem.  Measles is highly contagious; the virus is spread via air droplets (coughing, sneezing) and it can live on surfaces for up to two hours.

As you know, I am a Registered Nurse and a mom. I’m also planning my family’s upcoming Walt Disney World vacation. Therefore, I want to discuss the ONE question regarding this recent outbreak that I believe is paramount: How do I protect my family from a contagious illness like the measles while on our vacation?

I am not going to bore you with the epidemiological history of measles, nor do I intend to debate the safety and efficacy of vaccinations. But, let me be clear. Measles is not a harmless childhood disease.

There is no cure for measles, just supportive care while the virus runs its course – which includes high fever, cough, sore throat, runny nose and a nasty, full-body rash. About 35% of children under five who contract measles are hospitalized with complications such as pneumonia and encephalitis. Encephalitis can leave you deaf, brain-damaged or even dead. According to the Center for Disease Control, the death rate for children is 1 per 1,000.

Whoops, I’m sorry. I did say that I wasn’t going to throw numbers at you. But that particular statistic is truly devastating if you happen to be the parents of that one child.

So, here are my tips for reducing your chances of contracting the measles on your next Disney vacation (which just happen to be in line with recommendations from the CDC.)

1. Make sure you are fully immunized against measles.

  • If unsure of your immunity status, discuss your travel plans with your primary health provider.
  • You should have your blood tested for measles immunity, especially if you were vaccinated prior to 1989.
  • Get a booster vaccination if needed. (Those vaccinated after 1989 received two doses of vaccine, older people received only one.)
  • No infants under one year of age should visit Disneyland until the current outbreak has subsided.
  • If un-vaccinated or under-vaccinated, STAY AWAY.* See California Department of Public Health recommendations.

2. Anyone with a medical condition or who is receiving medical treatment that weakens the immune system should consider wearing a protective face mask, available at most larger drug stores. You can even purchase these cute Disney-themed masks for kids from schoolhealth.com (75/Box, $17.50)

Disney Face Mask

3. Practice meticulous hygiene

  • Proper hand washing with soap and water is vital, especially after using the toilet, after sneezing or before eating or handling food.
  • If no soap and water is available, use an alcohol-based hand sanitizing gel.
  • Cover mouth and nose when sneezing/coughing, preferably with a tissue. If no tissue is available, use your sleeve and not your bare hand.

4. Know the signs and symptoms of measles and, if noted, seek medical attention immediately.

measles2

 

Cancelling a planned vacation can be extremely difficult, but for those without sufficient immunity to the measles, travel to Disneyland — or any destination where large numbers of people gather and there are a number of international visitors — would be highly risky at this time.

The views  expressed in this blog are not meant to be a substitute for medical advice. Please consult your personal physician or health care provider before undertaking any type of travel or new activity. Thank you!

~ Kathy

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Our Listener Community: Meet Bill! Traveling “The World” in a Power Wheelchair

 

Bill K.

 

Note: this article originally appeared in my ‘Faces in the Queue’ column on WDW Fan Zone.

 

The lift groaned softly as it hoisted its precious cargo higher and higher into the air. Three hundred-plus pounds of man and machine (mostly machine) locked into position with a shudder and a snap.  With mounting excitement, Bill prepared to board the Magical Express bus while seated in his power chair.  He chuckled to himself as he looked down… w-a-a-y down… at his nervous fiancé staring up at him from the pavement below.

Tracy caught sight of Bill’s face, saw the twinkle in his eyes, and realized she had been holding her breath. She exhaled deeply, willing herself to relax.  “I have to stop worrying so much,” she thought as she smiled up at her Prince Charming. Bill could always make her feel as though everything would be all right. “But I will never get used to seeing him hanging off the side of the bus like that!” she thought. Once he was safely inside, she boarded the bus that would take them to the Pop Century resort. But instead of sitting next to Bill, she pulled out her camera and slid into the front seat!  She just had to get that perfect shot of the sign welcoming guests to Walt Disney World!

Bill watched her making her preparations and smiled. Then his smile grew to an all-out grin as he anticipated her reaction to the flower arrangement that would greet her as she entered their room at Pop.  This romantic gesture had become a tradition for him and every trip it produced a satisfying flood of happy tears from his sentimental fiancé.

Bill had introduced Tracy to WDW in 2006, just a little over a year after they had begun dating.  Although he had visited the World several times previously, she had been a bit apprehensive before their trip and had thrown herself into a flurry of research.  Thirty-six years of living with the effects of Cerebral Palsy had strengthened Bill both mentally and emotionally, but Tracy wasn’t entirely sure he would be up to it physically.

Cerebral Palsy is caused by a brain injury that affects the way the brain controls muscle movements. Not everyone who has CP shares the same number or severity of symptoms, but all have problems with mobility and balance. Bill’s CP affects his muscles to such a degree that he is unable to walk and must be physically transferred in and out of his wheelchair. He has muscle spasms hundreds of times each day and constant pain in his right ankle. He only has the use of his left hand because his right hand stays closed and that arm is prone to sudden, involuntary movements… he calls it “Wild Thing!”

Every single activity of daily living is a challenge for Bill.  Yet here he was, asking his girlfriend… a self-proclaimed worry-wart… to go on what she thought would be a grueling theme park vacation! He used his best powers of persuasion and eventually Tracy decided it was useless trying to resist. “I look into those deep blue eyes and I just melt!” On that vacation she fell in love with Walt Disney World almost as quickly as she had fallen in love with him.  Four years later they took their eighth trip to Disney together.

I caught up with Bill recently and asked him about his passion for Walt Disney World and what his thoughts were on Disney’s extraordinary ability to accommodate guests with special needs.

BillandTracy

 

KATHY:  Bill, you recently visited WDW for the thirteenth time; I suppose you could say you’re a big fan!

 

BILL:  Yes I am a big WDW fan. My first time was my 10th birthday and enjoyed every minute of it.

 

KATHY:  I’d like to talk about how and why you’ve developed a passion for the World.

 

BILL:  The main reason is it is very wheelchair accessible. When Disney creates a new ride they always try to design it so users can stay in our chairs.

 

KATHY:  You have multiple physical challenges because of your CP: muscle spasms, balance & mobility issues, and speech that can be difficult to understand for those who don’t know your speech pattern. How do you manage all that and still have such boundless energy and enthusiasm for WDW?

 

BILL: I don’t let my disability get the best of me.  I try to live my life to the fullest, there is always a way to make the muscle spasms not as severe.  When I get to WDW I forget about the pain, there is so much going on my mind doesn’t focus on it.  As for having enthusiasm for WDW, I feel normal there.  Most CM’s [Cast Members] go out of the way to make me feel special but not because of my disability.

 

KATHY: Tracy has said that you two love Disney because you are accepted for what you are and not what you look like. Tell me more!

 

BILL:  People don’t talk down to me there, like I have a mental disability as well as a physical.  That happens a lot in the “real world”.  Many people in our town shy away from people with disabilities; they don’t know what to say so they don’t say anything.  At WDW people, both guests and CM’s, talk to each other.  No one knows a stranger, people say hi, if you have a button on you are congratulated.  People talk to me about my pins, if I am having a good day in the park, and ask me questions about accessibility.  I have even been mistaken for a CM 3 times in one day and that made me feel wonderful.  It let me see that people were more accepting of CM’s in wheelchairs.

 

KATHY:  Do you see yourself working as a Cast Member one day?

 

BILL: That is a dream of mine.  I would love to work in special events, coordinating the accessiblity of things.  It would be wonderful to work in the department that deals with accessiblity in the parks.  If we ever move to Florida Tracy and I really want to volunteer for Give Kids the World too.

 

Kathy: That’s an amazing organization.

[Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need.]

 Kathy: Another thing that I find amazing is that you’ve earned not one but three college degrees and recently completed you Master’s in rehabilitation management. Whew!

 

BILL:  I did get burned out at times, but I wanted to complete my degrees.  I wouldn’t have been able to do it without the support of my family and Tracy.  I am hoping with all my schooling a potential employer will look past my disability and see my mind, my personality, and that I go after what I want.

 

KATHY:  You’re a big, big Star Wars fan… and a fan of Yoda in particular. He’s known to have said, “Try? There is no try… do!  Do you think that describes your personality?

 

BILL:  I have that tee shirt, yes it describes my personality.   I don’t take no for an answer.  If there is one way I am not able to do something, I find other ways of getting it done.  A teacher once told our class “if you want something you have to go to it, it won’t come to you” and I always remembered that.

 

KATHY: I’m sure that this kind of attitude is born from a lifetime of overcoming so many obstacles that able-bodied people don’t have to contend with.

 

BILL: I was very lucky, my parents always supported what I wanted to do and helped me overcome things that got in my way.  I want to summer camps with persons with disabilities and it helped me see I could do things.  The object of the camp was to help me grow as a person and not be shy.  They helped me to see I could do many things if I worked hard enough.

 

KATHY: Yet our differences seem to blur at Walt Disney World… why do you think that’s so?

 

BILL: There is a common bond, our love for Disney.  They make it where able bodied and persons with disabilities can enjoy experiences together.

 

KATHY: And that’s why you’ve been back thirteen times! Tell me, how was your last trip compared to that first one way back when you were ten years old?

 

BILL: The parks are a lot more accessible.  When I went there when I was 10 there was only Magic Kingdom and Epcot.  Magic Kingdom wasn’t very accessible; the ADA [Americans with Disabilities Act] wasn’t in effect yet.  I transferred out of my chair so much more back then. I am more comfortable now since I can stay in my own wheelchair.  I feel a lot more independent now, I could go to the parks by myself if I wanted and ride many things.

 

KATHY: I think that’s the way Walt would’ve wanted it! Tell me about one special memory of Disney magic.

 

BILL: Tracy’s birthday special this trip, so I enlisted our friends Toni and Terry who were in WDW at the same time as us to help me.  Terry went with me to the Boardwalk area and I got Mickey head earrings and a necklace for Tracy.  Toni helped by arranging with the manager of `Ohana to let [me] have flowers delivered there.  I picked out the arrangement, gave Toni my [credit card] number and she made it happen.  I didn’t want Tracy seeing me ordering from the Disney Florist.  The day Toni and Terry left they had breakfast at `Ohana and dropped off the jewelry to be ready for Tracy’s surprise.  When the host took us to be seated, the flower arrangement was on the table with the two jewelry boxes opened.  We had a table with a great view of Holiday Wishes and had a wonderful evening.  It was perfect.

 

KATHY:  How romantic! And to think, you met Toni and Terry online at a Disney fan site! How do you think the social network… Discussion Forums, Twitter, Facebook, etc… has affected the way we approach our Disney vacations?

 

BILL:  For us it has added to our vacations.  Tracy is the one that goes on the DISboards, Be Our Guest, etc., and formed friendships there that evolved into wanting to meet people in the parks.  Our first DISmeet was with you and your wonderful family and showed us how you really could form a bond with someone over a common love for something such as WDW.  We have been blessed to meet amazing people that we would love to see again and again.

 

KATHY:  Well, Bill, I know the Special Mouse readers will enjoy meeting you! Okay, let’s finish with some rapid-fire Q&A about your WDW favorites, all right?

 

BILL: Okay!

 

KATHY: Okay…. your favorite park?

 

BILL: Disney’s Hollywood Studios

 

KATHY: Favorite thing to do at the Studios?

 

BILL: Toy Story Mania is my favorite ride for all the parks. We also have to see Beauty and the Beast.

 

KATHY: Okay! Now… your favorite resort?

 

BILL:  Port Orleans French Quarter.

 

KATHY:  Favorite non-park activity?

 

BILL:  Eating, LOL!  (Just kidding)  Resort hopping and buying pins in DTD [Downtown Disney.]

 

KATHY: I think I already know the answer to this next one… favorite Disney restaurant?

 

BILL:  `Ohana. [The Polynesian Resort]

 

KATHY:  Ha! I was right!  How about counter service eats?

 

BILL:  Sunshine Seasons. [The Land Pavilion in Epcot]

 

KATHY: Tough one, now… favorite Disney character?

 

BILL: Buzz Lightyear.

 

KATHY:  And finally… you’ve visited WDW at many different times of the year. What’s your favorite time to visit and why?

 

BILL:  After the Christmas decorations are put up.  There is nothing like going through the parks seeing the beautiful decorations and hearing the happy Christmas music.  The lights on the Castle are just amazing, it is beautiful.

 

KATHY:  Thanks so much for giving up so much of your Sunday night to talk with me! Would you like to add anything else?

 

BILL:  In my opinion, no theme park compares to WDW in accessibility and customer service.

 

KATHY:  I agree, completely!

 

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

 

The next time you visit Walt Disney World, keep a sharp eye open for Bill. It should be easy to spot him… he’ll be wearing a lanyard full of pins on his chest and a huge grin on his face as he zips along in his Quickie P-222.  Go ahead… say hello! Take some time to talk a little Disney with him. Just like you, Bill is one Special Mouse!

 

~Kathy

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Should Your Special-Needs Family Take Advantage of Disney’s Extra Magic Hours?

extra-magic-hours-logo

If you visit the official website, you will see that, naturally, Disney Parks guests are presented with a number of perks designed to persuade them to spend their vacation dollars on-site by booking their stay at a Disney resort. One of these resort-guests-only perks is Extra Magic Hours at Walt Disney World resort hotels and Magic Morning Early Entry at the Disneyland resort hotels.

 

These are touted as a major perk of staying on-site: “extended theme park hours that give you additional time in select Disney Parks with valid theme park admission.”  So, essentially, you’re getting more “bang” for your theme-park-admission buck.

 

Sounds like a no-brainer, right? Wrong!

 

For guests with special needs, the correct answer is: It depends!

 

Let me tell you how my family started out as EMH users and eventually converted to EMH avoiders.

 

I used to be a big believer in EMH, especially years ago when, like Disneyland, the perk was limited to early admission to a different park each day. Our children were small, so we knew we were planning to hit each park early and then head back to our resort after lunch so the kids could nap. Then, in the evening, we would hop to a non-EMH park for dinner and the nighttime fireworks or entertainment.

 

This plan worked well for us because of the simple fact that most guests – especially as their vacation progresses – find it difficult to get up early and make it to the park at rope-drop. So if, say, the EMH Park for the day was the Magic Kingdom, we would arrive at 8am and pretty much have enjoyed all of Fantasyland at a leisurely pace by nine. Interestingly enough, guests would still be arriving just before what would have been the “regular” opening time and after! By lunchtime, there was a noticeable increase in the crowd level but – no matter! After lunch we were out of there!

 

That worked well for several years until…

 

The Extra Magic Hours schedule changed! No longer did the parks taking turns opening one hour early. Now there was this mish-mosh of one park opening an hour early one day, and the following day another park would stay open three hours later. Well, naturally the evening EMHs worked well for folks who like to sleep in, but we found that the benefit of the additional hours was cancelled out by the huge increase in the crowd level. (Evening Extra Magic Hours are understandably popular!)

 

Also, staying out late the night before, added to the fact that our children had aged-out of afternoon naps, often made it difficult to get everyone up and out the door for rope-drop the following morning. Soon we discovered that we had better luck avoiding the early EMH parks! To me, it just wasn’t worth getting stressed out first thing in the morning because it can often set the mood for the entire day.

 

Sleeping Dalmation

 

So, here is where the controversy comes in: are Extra Magic Hours parks always the place to head when you want to get the most for your Disney dollar?  The answer is really a both a yes and a no. 

 

If you’re traveling with young kids with special needs I’d say, yes. Definitely hit the early morning Extra Magic Hours Park, but plan to high-tail it out of there after lunch and take that nap! If you have teens then perhaps you can entice them to getting up each morning by promising a “sleep-in” morning somewhere in the middle of the trip, followed by a visit to the park with evening EMHs.

 

For our family, it is important to avoid crowds because of my son’s sensory issues related to his autism. We find that “reverse psychology” works best. Most resort guests will instinctively head for the Extra Magic Hours Park, so that is the one we avoid.

 

As with most things in Life, there isn’t one clear-cut solution to fit everyone’s needs. So I say, play with it. Do some experimentation of your own and find out what works best for you and your travel party!

 

~Kathy

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Safety IDs for Nonverbal Kids to Wear on Disney Vacations

Lost parents sign

Over the years, with the help of ABA and speech therapy, our sixteen year-old with Autism has gradually gained more speech. He’s not quite conversational, mind you, but he can understand what is being said to him and is able to communicate his needs. And he can answer basic questions like “What is your name?” and “What is your phone number?”

This was not the case when we first traveled to Walt Disney World in 2003. At the age of five, he was practically non-verbal. So you can imagine how worried I was about the possibility of him getting separated from us in a busy theme park. Even if he did manage to find a Cast Member (we repeatedly showed the kids pictures of what their name tags looked like), he wouldn’t be able to answer any of their questions!

The most obvious intervention — one used by many parents of non- or low-verbal children — is to sew labels into the children’s clothing. Well, that idea wouldn’t work for Billy because of his tactile hypersensitivity – he couldn’t tolerate the feel of the labels in his clothes. They seemed almost painful for him. Ditto for any type of ID bracelet or “dog” tag.

My husband came up with the perfect solution. He ordered Billy a Road ID that could be worn on one of his sneakers. It was just like the one he himself wore when running. All of Billy’s emergency contact information could be placed on the Shoe ID and it would not touch his skin at all!

Billy tolerated the Shoe ID so well that when we returned home we just left it on his sneaker. It attaches with Velcro, so it can be easily transferred to another pair of shoes if needed.

RoadID

 

If your child will tolerate it, the Road ID can also be worn on the ankle, the wrist, or as a “dog tag.”

images

My friend Heidi (also an Autism mom) developed her own version of sensory-friendly identification which she currently sells on Etsy. Safety ID Stickers for Kids hide your child’s personal information while still being highly visible if they need help. Just stick one on your child’s shirt and go! You pick from the many designs available for the outer sticker and Heidi custom prints the inner sticker with the contact information that you provide her. The stickers are weather proof and the ink will not run even when submerged in water. The stickers stay on until you take them off and leave no adhesive residue on the clothing like tape can.

SafetyIDStickers

 

They aren’t my cup of tea (because the information is so readily visible to strangers), but many parents choose Tattoos With a Purpose. Simply attach the temporary tattoo to your child in a visible area and using the provided marker write down a contact number on the tattoo in case your child goes missing.

TempTattoo

 

Temporary tattoos are non-toxic, hypoallergenic, and can be removed with rubbing alcohol or baby oil.

Another ID system developed by an Autism mom uses smart phone technology. If I Need Help is a non-profit organization that provides a place where the multitude of information about a person with special needs can be kept in one place. This information can be accessed by whoever needs it at the time. Profiles can be accessed manually from any web browser or via scanned QR Codes. QR Codes can be read quickly by any smartphone. QR reader Apps can be downloaded for free from App stores.

qr-code-id-patchx2

These QR Code patches can be sewn onto favorite items of clothing or…

QR-tshirt-sml_10_BestBudsMyKids

You can purchase a variety of clothing with the QR Code patches already attached.

 

Utilizing a Safety ID system for your non- or low-verbal child is an effective way to reduce the stress associated with touring a crowded environment in which the child may wander and become separated from you. Choose a system that works best for you and use it to have a more enjoyable vacation!

How about you? Does your family use a safety ID system that you like?

The first person to write a comment on this blog will receive one QR Code Patch compliments of Erin from If I Need Help!

Thanks for reading,

Kathy

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Chatting with Kellie, a Disney Lover with Down Syndrome

Kelli

Kellie’s mother knew that something was up.  It wasn’t like her daughter to complain about aches and pains, and she seemed to be getting sick all the time.  Normally she was as bubbly and chatty as any other eight year-old girl; perhaps even more so.  She usually relished any kind of outing, whether it be shopping or going out to eat, and struck up a conversation with every single person she met along the way, always with the same question: “Have you ever been to Disneyland?”  Kellie made friends everywhere!  Now she seemed to be tired all the time… too tired, even, for a day trip to her favorite place in the whole world: the nearby Disneyland theme park.

So, Kellie’s mother took her to see the pediatrician.  Along with the genetic disorder, Down Syndrome, Kellie had been born with a heart defect and had undergone open heart surgery when she was very young.  Evette wondered if her daughter’s symptoms were cardiac in nature but another, more frightening thought soon took hold.  “Could it be leukemia?” she asked the doctor, hoping and praying that she would say no.  After all, hadn’t her youngest child been through enough?

Instead of rejecting that possibility the doctor opted to do a blood test, which Kellie endured without a complaint.  That night Evette and her husband, Lance, anxiously awaited their daughter’s test results.  The next morning, the doctor called.

“Which hospital do you want me to send you to?” she said.

Kellie was admitted to Children’s Hospital of Orange County, near Disneyland.  Further tests of her spinal fluid confirmed that she had acute lymphoblastic leukemia (ALL), a cancer of the white blood cells, the cells in the body that normally fight infections.

According to the National Cancer Institute, ALL is the most common cancer in children, representing 23 percent of cancer diagnoses among children younger than 15 years of age.  It occurs in about one of every 29,000 children in the United States each year, with a somewhat higher incidence for children born with Down Syndrome.

Kellie took her cancer treatment in stride.  “I don’t think she ever grasped how very sick she was,” Evette recalls.  “She loved all the attention everyone gave her, at the clinic, the hospitals, etc.  She never gave me a hard time about going and having chemotherapy, spinal taps (‘poke backs’ as she calls them), and shots.”

Now a young woman of twenty-four, Kellie recalls that period in her life (late 1996 to early 1999) as sometimes being hard.  “I had a central line and had to take a lot of pills and once I even got shingles on my leg!” she says.  But she also recalls the thrill of a special visit from her favorite Disney character. “Goofy sat on my hospital bed!” she gushes. Then the Make-A-Wish Foundation chose her to be the recipient of a special gift. Together with her parents and her three older brothers, Kellie was given a magical trip to Walt Disney World in Florida.

The family began planning her Wish Trip in the summer of 1997.  “Kellie is moderately developmentally disabled and really had no real concept of what a Wish Trip was,” Evette related. “We kind of made that decision for her. We knew she would love Walt Disney World because of her love of Disneyland.  Living in Anaheim, of course, we had been to Disneyland more times than we can count.”   She recalled when volunteers from Make-A-Wish came to the house to interview her daughter.  Kellie turned the tables and began to interview them! “Have you ever been to Disneyland?” she demanded. ”What’s your favorite ride?”  Evette laughs, “They knew right away [the trip to Walt Disney World] was her own wish!”

Kellie’s original Wish Trip ended up being postponed; a few days before they were about to leave she came down with a fever.  This was potentially dangerous because of her central line (a catheter placed into a large vein in the neck, used to administer medication.)  Instead of a trip to Florida, poor Kellie took a three-day trip to the hospital for intravenous antibiotic therapy. “I wasn’t well enough to go to Disney World,” she says, “and I was very sad.”  But the story has a happy ending; eventually she was well enough to make the big trip in January of 1998.

What a thrill it was for Kellie to ride in a limousine to the airport!  She and her family flew to Florida First Class and before the plane left the gate the pilot announced that “a very special young lady named Kellie in Seat 1-A was making her first trip to Disney World!”  For Kellie, one of the highlights of their stay at Give Kids the World Village was taking a carousel ride with Tigger. “She loved all the characters and all the attention she got as a Wish Kid,” Evette says. “Everyone was so lovely to us.  She loved going to the different parks, but I think Magic Kingdom was her favorite since it was so much like Disneyland.”

Kellie finished her chemotherapy in the spring of 1999 and has been fine ever since.  According to the National Cancer Institute, improvement in survival for children with ALL over the past 35 years “is one of the great success stories of cancer treatment.”  In the 1960s, less than 5 percent of children with ALL survived for more than five years. Today, about 85 percent of children with ALL live five years or more.

Kellie lives every day of her life with a sense of joy and wonder and an enduring love of all things Disney.  When I asked Evette if she and her daughter would be interested in doing an interview, she told me that Kellie loves to talk about Disney to everyone she meets… and boy, was she right!  The did not use Skype, so we had our interview via Instant Messaging. Kellie had as many questions for me as I had for her… so read on and you will learn a lot about me, too! We “talked” for almost two hours!  Let me share the highlights of our conversation with you. (Kellie’s mom helped by doing the typing for her.)

Hang onto your hats, folks. This interview whisks you down to Walt Disney World, across the country to Disneyland and then out to sea with the Disney Cruise Line!

Kelli2

KATHY:  Hi Kellie! My name is Kathy and I love Walt Disney World. Your mom says that you do too!

KELLIE: Hi Kathy. I like Disney World, Kathy!

KATHY:  I’d like to talk to you about Walt Disney World and then share it with some friends on the internet. Is that okay?

KELLIE: Sure!

KATHY: This is going to be fun! How many times have you been to Disney World?

KELLIE: I’ve been to Disney World 4 times.

KATHY:  Oh, so you are an expert!

KELLIE: The first time I was 11 years old and I was on my Make-A-Wish trip.

KATHY:  Tell me about Make-A-Wish, Kellie. Were you surprised when they told you that you could have a wish granted?

KELLIE: I was very happy when they told me I was going to Disney World! My three brothers were happy too!

KATHY:  I’ll bet!

KELLIE: I want to know your favorite ride at Disney World!

KATHY:  Oh, wow, that is so hard! I can’t pick just one! I love Soarin’ at Epcot and the Haunted Mansion at Magic Kingdom… What is yours?

KELLIE: My favorite ride is Big Thunder Mountain Railroad! I like Turtle Talk with Crush at Epcot, Indiana Jones Stunt Spectacular at Hollywood Studios and Dinosaur at Animal Kingdom.  Do you like Thunder Mountain?

KATHY:  I do, especially in the dark! Have you ever ridden it in the dark?

KELLIE: Yes we rode it at night when we visited in 2009, it was fun!

KELLIE: What is your favorite ride at Animal Kingdom?

KATHY:  I really love Expedition Everest but I also like wandering along the jungle trek and the forest trail to look at the animals. My son loves Expedition Everest, too.

KELLIE: What is your son’s name?

KATHY:  His name is Billy and he just turned 13.  He loves Dinosaur, but I think it is LOUD!  I always wear ear plugs on Dinosaur.

EVETTE: Kellie laughed when I said you wear ear plugs, she said you were silly… LOL.

KATHY:  It is the only way that I can ride!

KELLIE:  My Mom rents a wheelchair for me.

KATHY:  A wheelchair can really come in handy, there is so much walking at Disney World! Most people don’t realize how BIG it is!  I know that you can walk by yourself, so the wheelchair is so you don’t get too tired, right?

KELLIE: Yes, I use it so I don’t get tired.

EVETTE: She has low muscle tone due to the Down Syndrome and I believe the Chemo affected her legs too.

KATHY:  We took my husband’s aunt to Disney World. She was almost 80 and did NOT want to use a wheelchair. She changed her mind by the middle of the week! There’s a lot of walking…

KELLIE: What is your husband’s Aunts name?

KATHY:  Her name is Rae.  Kellie, do you think people treat you differently when you are in a wheelchair, or the same?

KELLIE: The people are friendly.

EVETTE: She may not know if they treat her different; she makes friends everywhere!

KATHY:  Any good stories to tell about friends you made at Disney World?

KELLIE: I like when the cast members ask if I want to go again on a ride and I don’t have to get off first. I really liked eating at 1900 park Fare and having Cinderella, Prince Charming, Lady Tremaine, Anastasia and Drucilla come to our table to talk to me and take a picture with me. The cast members are always very nice to me and take time to talk to me. I really liked meeting Ranger Stan at the Wilderness Lodge; he was so nice and I still talk about him to my Mom and Dad.

Kellie with Ranger Stan, who passed away in 2011

KATHY:  Oh! I met Ranger Stan when we stayed at Wilderness Lodge!  He is very nice.

KELLIE: I have stayed at Saratoga Springs and Bay Lake Tower. I like Bay Lake Tower best. I like to be able to go on the Monorail!

EVETTE: We are Disney Vacation Club members since 2008.

KATHY:  My husband thinks Bay Lake Tower would be cool because of the monorail!

KELLIE: What is your husband’s name?

KATHY:  His name is Ed; he loves Disney World, too.

EVETTE: She wants to know about everyone! She wants to know Ed’s favorite ride.

KATHY:  Hmm. I know he loves Soarin’ and Test Track.

KELLIE: Whooooo, like me!

KATHY:  Do you have a favorite park? I don’t think that I can choose just one!

KELLIE: Magic Kingdom!

KATHY:  Are you excited about the new Fantasyland they are building?

KELLIE: I am excited; I want to see the Little Mermaid ride!

KATHY:  Me, too! It looks amazing! And I want to eat at Be Our Guest in the Beast’s castle. Speaking of food, what is your favorite Disney restaurant?

KELLIE: I like Teppan Edo in Japan.

KATHY:  Oh, yes! Isn’t it fun to see the chef preparing the meal right in front of you?

KELLIE: Yes. I liked the chicken. Do you like the chicken too?

KATHY:  Yes, it is so tasty. Did your chef make a smoking onion volcano?

KELLIE: Yes. Did you have dessert there?

KATHY: No, we were saving room for gelato in Italy!

KELLIE: Did you see the fireworks?

EVETTE: (Illuminations)

KELLIE: I like Illuminations!  Do you like the Indiana Jones ride at Disneyland?

KATHY:  We’ve only been to Disney World, never to Disneyland.

KELLIE: Do you like Tower of Terror?

KATHY: Yes I do, but it took me until our 3rd trip to Disney World to get up the courage to ride it!

KELLIE: I want to go Disneyland and California Adventure next year. I want to go on the Indiana Jones ride with my Auntie JoAnn.

KATHY:  I wish that Disney World had the Indiana Jones ride. The show at Disney Studios is okay, but I think the ride would be more fun!

KELLIE: I like the ride better!

KATHY:  You used to live near Disneyland…

EVETTE: We lived within walking distance of Disneyland; Kellie really wishes we still lived there!!

KATHY:  I can’t say that I blame her one bit!

EVETTE: Yes, in fact her dad’s first job was at Disneyland. He was in the bicentennial parade in 1976.

KATHY:  Wow! So he was a cast member!

EVETTE: He also worked as a Janitorial Host on Main Street; he has some stories to share about that!

KATHY:  See, Disney in Kellie’s blood!

EVETTE: Right! I hadn’t thought about that… LOL.

EVETTE: I remember when my Dad would give my sister and I each $5.00 to go to Disneyland. That would buy our ticket book (yes, I’m that old), plus be enough to buy food for the day while we were there.

KATHY:  Kellie, what was it like to have Disneyland as your neighbor?

KELLIE: I loved going to Disneyland a lot, we had annual passes!

KATHY:  I would, too! How old were you when you moved away?

EVETTE: When Kellie was 15 when we moved to Kent, WA because of my husband’s job. We moved to Wheeling, IL in 2005 for the same reason. She can’t understand why some people have never been to Disneyland or Disney World.  She asks EVERYONE she meets if they have been.

KATHY:  Your mom said you were going on another Disney cruise soon; a cruise to Alaska!

KELLIE: I love Alaska!

EVETTE: We haven’t been yet, but she loves it… LOL!

KATHY:  Tell me all about the Disney cruise you took.

EVETTE: That was the Eastern Caribbean cruise on the Disney Magic in 2009.

KELLIE: I liked going to see Karaoke on the ship! One of the guests, a girl sang a song for me.  She sang ‘Beauty and The Beast.’

KATHY:  You meet so many nice people!

KELLIE: I liked all the Disney shows too!

KATHY:  There is so much to do on the Disney cruise.  When you get off the ship in Alaska, what are you going to do?

KELLIE: We are going to go whale watching, take a train ride and see a lumberjack show.

KATHY:  Wow!  What special shows are on the cruise you are taking this summer?

KELLIE: Toy Story and the Golden Mickeys.

KATHY:  I would love to see Minnie in her fancy evening gown and Mickey in a tuxedo!  Do you like Disney music?

KELLIE: I like to listen to my Disney CD’s in the car when we take a ride.

KATHY:  Me too!

KELLIE: I have Finding Nemo, The Musical CD and The Lion King CD from Disney World. Do you have those?

KATHY:  No, but I will have to get them. I love both those shows at Animal Kingdom. Which one do you like best?

KELLIE: The Lion King!

KATHY:  Me too. I could see it a hundred times and not get tired of it!

EVETTE: She’s now quoting some of the dialogue from Nemo…

KATHY:  The puppets in that one are amazing… I forget that there are actors underneath!

EVETTE: Now she’s singing ‘Hakuna Matata’ from Lion King!

KATHY: That song is so catchy! I will probably be humming that all day, now that it’s in my head!

EVETTE: (She laughed)

KELLIE: Who is your favorite Character?

KATHY:  Oh boy, I love so many characters. Probably Mickey and Minnie! How about you?

KELLIE: Goofy.

KATHY:  Gawrsh!

EVETTE:  (She laughed)

KATHY:  Kellie, thank you so much for spending time with me!

KELLIE: You’re welcome.

KATHY:  I’m so glad that you are my new Disney friend!

KELLIE: Bye!

KATHY:  Evette, let me ask you… why do you think the Disney Parks are so magical for your daughter?

EVETTE: I’ll try to sum up her feelings. I think she loves them because she still has a sense of innocence and wonder. She believes in the magic that being in the parks evokes.  Mickey Mouse and Goofy, etc. are real to her (she still believes in Santa and the Easter Bunny too.)  Disney World or Disneyland allows her to believe in and see the magic around her.

KATHY: Perhaps that’s a gift that God gives to our children with developmental disabilities… they get to keep the best of childhood forever!

EVETTE: I do believe that!

* * * * * * * * * * * * * * * * * *

(This interview originates from 2011.)

Thanks for reading,

Kathy

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Princesses with Pumps: Touring Walt Disney World with an Insulin Pump

Kayla (right) with her sister, Trinity

The three girls shrieked and squealed as they chased each other across the brick courtyard.  Princess Tiana and Prince Naveen were late for their meet ‘n greet in Liberty Square and the children were getting antsy.  One of the moms standing in line broke from her conversation and called out, “Kayla, sit down and check your blood sugar!”

That’s a new one.  When one of mine starts revving up I say, “Take a chill pill!” or “Cool your jets!”

The oldest girl immediately stopped running and sat down.  Whoa. “Check your blood sugar” just zoomed to the top of the Mom-isms list!

Kayla reached into the blue and white sport-pack at her waist and pulled out her cell phone.  Ah, typical tween!  Always texting.  But, wait.  That was no cell phone…

She wiped a fingertip with an alcohol pad, pricked it with a tiny lancet and touched it to the device.   After pressing a few buttons, she slipped it into her bag and ran off to play.   I had just witnessed a ten year-old managing her diabetes “on the go” in the Magic Kingdom!

Like three million other Americans, Kayla has Type 1 diabetes.  It’s a condition that occurs when the pancreas, an organ about the size of a hand, stops producing insulin. Insulin is a hormone that helps the body move glucose (sugar) from the bloodstream into cells throughout the body.  Without insulin the glucose stays in the blood, where it can cause serious damage to all the organs of the body.

For this reason, people with type 1 diabetes must take insulin in order to stay alive.  That means undergoing multiple injections daily, or having insulin delivered through an insulin pump, like Kayla’s.   In order to know how much insulin is needed throughout the day, the amount of sugar in the blood needs to be checked frequently.  Kayla must prick her finger and test her blood six or more times a day; even when she is in Walt Disney World.

Especially when she is in Walt Disney World!

People with diabetes must carefully balance their food intake and their exercise to regulate their blood sugar levels.   This helps them avoid low blood sugar and high blood sugar reactions, which can be life threatening.   The balancing act can be especially difficult when a vacation messes with their daily routine.

My curiosity was piqued, so I introduced myself to Kayla’s mother and father, who were standing behind me in the queue.  Sarah and Chris were more than happy to talk Disney and Diabetes with me.  I learned that their second daughter, Trinity, has diabetes but Leah, the youngest, does not.  Trinity uses an insulin pump like her big sister.

I was especially interested in learning more about the pump. “It’s a Ping One-Touch,” Chris explained. (Men! They love to talk about technology!) He introduced me to Kayla.  She graciously opened her bag and took out the remote device that helps her manage her blood sugar.  I was amazed at how small it was!

I recall working as a Visiting Nurse in the early 1980’s; back then we carried bulky glucose meters that needed large “hanging drops” of blood to measure a patient’s blood sugar.   Let me tell you, getting that much blood out of a child’s fingertip is not fun.   I spent a lot of time teaching parents how to do it, as well as how to draw up insulin syringes and administer the injections to their children.  The injection sites need to be “rotated” around the body… the arms, the legs, the abdomen… to prevent skin damage from repeated trauma of the needles.   And then there was the issue of needle safety and disposal of the sharps.

What a difference with today’s technology!

Kayla and her dad told me how the two-part system worked.  Basically, the pump acts as a pancreas, secreting small amounts of insulin into the bloodstream throughout the day.  It is connected to the body using an infusion device.  Theremote is the cell phone-like gadget Kayla carries in her bag.  It reads her blood sugar using a tiny drop of blood on a test strip, then communicates the information to the pump using wireless technology. It can also be used to count carbs in a meal or snack!  This way, the pump can continually fine-tune the amount of insulin Kayla’s body needs as she goes about her day.

“That’s amazing!” I said to Kayla.  “You can work this thing all by yourself?”  She grinned.  “Sure, it’s easy!” she replied.  I was in awe of the technology AND the ten year-old.   With obvious pride, Sarah informed me that both Kayla and her sister, Trinity, are Youth Ambassadors for the North Florida Chapter of the JDRF (Juvenile Diabetes Research Foundation.)

You can read more about the program here:

http://www.jdrfnorthflorida.org/famnetwork_junior.php

After hearing that the family lives in Florida I asked Kayla how many times she had visited Walt Disney World.

“Oh,” she said, tapping her chin with her index finger, “about eighty.”

EIGHTY!  My mouth dropped open and they all laughed.  “We do come here a lot,” Sarah admitted.

Eighty trips may not be an exaggeration; the family lives only an hour’s drive from the World.  They take frequent day trips. “We must’ve spent three out of four weeks here last July.”   Sometimes they stay on property… on this particular trip the family was camping at Fort Wilderness in an RV.

“Do you ever mix it up and go to Sea World or Universal?”  (I had to ask.)

Chris smiled. “We’ve been there, but I would rather be here because they make it so easy,” he said.  “At one point Kayla developed celiac disease and required a gluten-free diet,” Sarah interrupted.  “At Universal they were, like, ‘what’s gluten-free?’ We had to explain everything!”

Chris continued, “Here at Disney, every restaurant accommodates my daughter’s special diet; you don’t have to explain, they just do it.”

That confidence in Disney chefs is invaluable; for Kayla it could mean the difference between life and death.   She has severe allergies to peanuts and tree nuts and would have a life-threatening reaction if they were ingested accidentally.   Her mom carries an EpiPen auto-injector in case of such an emergency.

You can learn more about the EpiPen here:

http://www.epipen.com/about-epipen

“That’s a lot to worry about,” I said.  “Has she ever had any medical emergencies at Disney?”

“Kayla had a diabetic emergency last year while visiting Hollywood Studios,” said Sarah.  “Her blood sugar dropped dangerously low.  I ran to a Cast Member and told him that my daughter needed juice right away.  He immediately stopped what he was doing, got the juice and gave it to me… no questions asked.”   Thank Goodness! Kayla’s Disney day could have ended in the Emergency Department had her mother not kept her under her watchful eye.

It was about this time that we were beginning to wonder if Tiana and Naveen had decided to play royal hooky that day.  (We soon learned from a passing CM that we had miscalculated the meet ‘n greet time by an hour!)  The little queue reluctantly disbanded, but not before Kayla’s parents agreed to let me take a picture of her.  I took out my camera and little Trinity jumped up and down with excitement.  “Can my sister be in the picture too?” Kayla asked.  Trinity looked up adoringly at her big sister. The girls wrapped their arms around each other and posed.

I got my princess meet ‘n greet after all.

~ Kathy

(This article appeared originally as a part of my Faces in the Queue series at WDW Fan Zone.)

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Celebrating Episode Fifty with a Giveaway!

We are fast approaching our 50th episode of the podcast — yay! Let’s celebrate with a giveaway! This giveaway will ONLY be advertised on the show, the Facebook Fan Page, and the private group on Facebook, so the odds of winning are very good! It’s my way of saying “Thank You” for being a part of the Special Mouse community. Best of luck! ~ Kathy

a Rafflecopter giveaway

 

 

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Pirates, Autism and Mickey’s Not So Scary Halloween Party

When my family had to choose our Disney-themed costumes for Mickey’s Not-So-Scary Halloween Party in 2009, we took our cues from my then-twelve-year-old son, Billy, who has Autism.  At first, he flatly refused to wear any costume. I’m quite sure that the only reason I was able to sweet-talk him into it was because we were going to Walt Disney World!

So, after weeks of getting “No!” “No!” “No!” as a response to “What do you want to be for Halloween?” he abruptly changed his mind. “Pirate!” he said. “I will be a pirate!”

“OK,” I said. “Billy will be a pirate.”

“And Mommy,” he declared. Okay…

“And Daddy,” he continued. “And Tricia and Catie!” (sister & cousin)

If Billy was going to dress like a pirate, we were ALL going to have to dress like pirates! Luckily, the rest of the family agreed to go along with the theme. (You end up doing quite a lot of this when living with Autism.)

As it turns out, dressing like a pirate is not that difficult to do and was an excellent choice for a group MNSSHP costume. It certainly helps that Disney has a long tradition of pirate adventure films:

For example, in 1950, Disney released Treasure Island, a live-action film adapted from Robert Louis Stevenson’s swashbuckling tale.

treasure_island

LongJohnSilverLong John Silver

 

In 2002, Disney created an animated science fiction version of this film called Treasure Planet.

Treasure-Planet

 

JohnSilverJohn Silver

Another well-known Disney pirate was Captain Hook, the villain in the animated classic Peter Pan (1953). The film was based on the play Peter Pan, or The Boy Who Wouldn’t Grow Up by J.M. Barrie.

PeterPan

 

CaptHookCaptain Hook

The franchise was modernized with Jake and the Never Land Pirates, a musical interactive animated children’s show, debuted on the Disney Junior channel in 2011.

IZZY, CUBBY, SKULLY, JAKE, PETER PANJake, Izzy, Cubby & Skully with Peter Pan

 

HookHook

(Have you ever noticed how may pirates have prostheses?!)

Of course, there are plenty of pirates in the Disney Parks:

POC_DLDisneyland

POC_WDWWalt Disney World

DL_POC

In 2003, the Pirates of the Caribbean attraction inspired a series of wildly successful live action films…

JackCaptain Jack Sparrow

Which, in turn, inspired changes in the attraction!

JohnnyJack

 There were plenty of fellow “pirates” at the party that night…

TiggerTigger wearing a pirate costume!

All in all, I think “Pirates” was the perfect themed costume choice!

MNSSHP_09Our “pirate” family!

I hope you have fun getting YOUR Halloween costumes together this year! Thanks for reading!

~ Kathy 

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Planning Your Special-Needs Disney Vacation: Go With the Flow, Dude!

 

Crush

 

It’s kind of funny how Life changes. At this moment I’m sitting in a hospital room watching my son’s chest rise and fall in an easy rhythm of sleep. Today is the start of Day Three of inpatient neurological testing and while the experience has been challenging, it hasn’t been nearly as difficult as I had anticipated. Today will be the kicker, though: eight hours of nothing-by-mouth-not-even-ice-chips, followed by the dreaded needle stick in his arm in preparation for an MRI. Dum Dum DUM!

But for now, my boy is hugging his pillow and sleeping peacefully and I sigh. We’ll cross that bridge when we come to it.

A quick glance at the calendar reminds me that, hey! I shouldn’t be “wasting” my time scrolling through my Facebook feed; I’ve got a Walt Disney World trip to finish planning! It’s what — seven? No, FIVE months (!) until our vacation and, other than our resort reservation and a rough idea of which parks we plan to visit each day, I haven’t done much trip-planning at all. Kind of ironic since I host a Disney trip-planning podcast!

I chuckle, realizing that at this same point five or ten years ago I would have already created and revised several versions of our “Operational Plan,” as my husband used to call it, teasingly.  Oh, I was the consummate theme park strategist back then, list-maker extraordinaire, queen of the Excel spreadsheet, determined to ensure that our special-needs family would suck every last drop of magic out of our visit to Walt Disney World. How could things have changed so much in just a few short years?

Perhaps it’s not Life that has changed; I have.

I used to think a lot like MARLIN, Nemo’s Dad from Finding Nemo:

Marlin

“It’s okay, daddy’s here. Daddy’s got you. I promise, I will never let anything happen to you…”

Well, perhaps I was never quite as neurotic, but like Marlin, but in the beginning of our Disney vacation story my motivation to plan the “perfect” trip came primarily from a place of fear. Fear that my son would not be able to tolerate the sensory onslaught of the theme park experience. Fear that his behavior would affect his — and thus our entire family’s — ability to enjoy the parks. Fear that we would miss out on some of the “must-do” shows and attractions. Fear that the experience would be so negative that my husband would refuse to come back. The fears, anxieties and apprehensions had the potential of escalating out of control, much like my son’s behavior.

Eventually, I found myself following the advice of Marlin’s travel companion, DORY:

Dory

“We just keep swimming!”

This has actually become somewhat of a mantra for Disney-loving special-needs parents.  No matter what, we tell ourselves, we have to keep going — we have to just keep swimming. There’s a little problem with swimming constantly, however. It requires a tremendous amount of energy, especially during those times that are so stressful they make you feel like you’re caught in a rip current. If you panic and try to fight the current by swimming toward shore, you will exhaust yourself and perhaps drown.

When I feel like Life is pulling me out to sea like a rip current, I’ve found that the best thing to do is to act like CRUSH and go with the flow…

Crush with turtles

“Dude!”

Okay, so I’m not 150 years old, but I have been living on the special-needs-mom timeline for the past 14 years and have been a Disney trip-goer for ten. I’ve learned a thing or two about vacationing with my family, not the least of which is that you can plan and plan and plan some more, but there are always – and I mean always – going to be unexpected variables that will affect how swimmingly our day and even our entire vacation will go. I learned that, incredibly, I cannot prevent anything “bad” from occurring during our Disney vacation.

Let me repeat that:

I cannot prevent anything bad from occurring during our Disney vacation!

It seems like common sense, but it was a difficult lesson for me to learn. Why did I spend so much precious energy chasing after something that is impossible to achieve? Marlin tied himself up into knots worrying about bad things happening to Nemo — why?

Because he had been hurt deeply, of course. He lost his wife and all but one of his children. Like a panicked swimmer caught in a powerful rip tide he felt completely out of control when he was unable to prevent the tragedy. He vowed never to let that happen again. Funny thing is, by holding on too tightly to Nemo he caused the very thing he feared the most!

When something “bad” like a disability or illness or some other form of personal hardship befalls us, it’s natural to respond the way Marlin did. We feel out of control and in response we become control freaks — not all of us to the same degree, of course. But control freaks, nevertheless.

Over the years I discovered that the more I tried to plan, schedule, structure and otherwise “bullet-proof” our Disney vacation, the more things would fall apart anyway! My husband would become irritable, my children would balk and I would find myself in tears halfway through the week wondering what had gone so terribly wrong.

I was holding on too tight; I had to learn how to relax and to be more flexible. As I relaxed, so did my family and we had a much better vacation because of it.

Come to think of it, the more relaxed and flexible I am about my son’s autism, the better our family is able to adapt and cope with it.

So, if you are making preparations for your special-needs Disney vacation and feel yourself becoming overwhelmed, stop your frantic paddling and kicking. Try floating your way out of that rip current and taking leisurely swim back to shore. Try to go with the flow-o-o-o-o-o-o-o-o-o.

Lyrics to ‘Go With the Flow’ from Finding Nemo the Musical:

ENSEMBLE:
Dude
Focus Dude
Dude

MARLIN:
Ooh

CRUSH:
He lives!

MARLIN:
What happened?

CRUSH:
You took on the jellies, mini man. You saved Little Blue!

MARLIN:
Little Blue? Dory! Is she okay?

DORY:
Catch me if you can! Hi Crush!

SQUIRT:
Kowabunga dude!

MARLIN:
(Gasp!) I gotta get outta here! I gotta find my son! I gotta get to the E.A.C! Hey! How do I get to the E.A.C!?

CRUSH:
Dude
You have travelled far
Ya must be swimmin’ under a lucky star
You’re exactly where you’re meant to be
So grab some shell and surf the E.A.C with me
Go with the flow-o-o-o-o-o-o-o-o-o

ENSEMBLE:
(That’s the only way to do it. Just get on over to it)

CRUSH:
Flow-o-o-o-o-o-o-o-o-o

ENSEMBLE:
(That’s the only way to do it. Just get on over to it)

CRUSH:
Go with the flow-o-o-o-o-o-o-o-o-o

ENSEMBLE:
(Go with the flow)

CRUSH:
Don’t be a high-strung fellow
Kick back and keep it mellow
Woah woah woah
Go with the flow
(spoken)
Jelly-man, Offspring.

MARLIN:
Hi.

CRUSH:
Offspring, Jelly-man.

SQUIRT:
Jellies? Cool!

CRUSH:
Totally.

DORY:
Well, what are you waiting for? Jump on him!

SQUIRT:
Woah!

MARLIN:
(gasp!) Oh my goodness!

CRUSH:
Kill the motor dude
Why don’t you take it slow?
Let us see how Squirt does flyin’ so-ho-lo

SQUIRT:
Woah! That was so cool!
Dad, did ya see what I did?

MARLIN:
Well I’ll be a sea-monkey’s uncle!

CRUSH:
YOU SO TOTALLY ROCKED, SQUIRT!
You’re such an amazing kid

MARLIN:
Jellies, huh?

CRUSH:
It’s awesome
You’re eggs’ on a beach then
Cu-ku-ka-choo

ENSEMBLE:
(Cu-ku-ka-choo)

CRUSH:
They find their own way back to the big ol’ blue

MARLIN:
All by themselves?
But what if they’re not ready?
I mean how do ya know?

ENSEMBLE:
(how do ya know?)

CRUSH:
Well ya never really know
But if they’re ever gonna grow

CRUSH AND ENSEMBLE:
Then ya gotta let ’em go
Ya know?

CRUSH:
Just go with the flow-o-o-o-o-o-o-o-o-o

ENSEMBLE:
(That’s the only way to do it. Just get on over to it.)

CRUSH:
Go with the flow-o-o-o-o-o-o-o-o-o

ENSEMBLE:
(Rip it, roll it, curl it. Ride inside it, twirl it.)

CRUSH:
Go with the flow

ENSEMBLE:
Go with the flow

CRUSH:
When you’re raising sons and daughters
Try surfin’ the muddy waters
Woah woah woah!

ENSEMBLE
Go with the flow
Go with the flow
Go with the flow

CRUSH:
Get ready for Sydney, dude! You’re exit’s coming up!

MARLIN:
Oh wait I forgot. How old are you?

CRUSH:
Hundred and fifty, dude. And still young!
YEAH!

~ Lyrics courtesy of stlyrics.com

You can enjoy this number from Finding Nemo the Musical by clicking on the link.

Thanks for reading!

~ Kathy

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Meet Liz & Jeff From Allergy Free Mouse!

Picture a young family enjoying their first visit to one of the Disney parks.  It’s a blazing-hot afternoon in June and they’ve been touring since the park opened. The children are starting to get fussy – it’s time to head back to the resort for a nap. They whine at the mention of leaving, but settle down after the parents announce they will stop for ice cream on their way out of the park.

Sitting in her stroller, little Mary is attempting to eat her first Mickey bar all by herself.  Soon her face, hands, and bib are covered with chocolate. Onlookers smile. “Adorable!” they coo.  At the bus stop her father snaps half a dozen pictures of his messy girl. Mary begins to blink and cough. Her mother pats her gently on the back, imagining that a mouthful went down the wrong way.  She pulls out a sippy-cup filled with water. The toddler takes it, but the liquid makes her gag. “Mama,” she cries in a hoarse voice, rubbing her eyes furiously. Soon her face is covered with raised red welts and her lips have swollen to twice their normal size. The coughing turns to wheezing. Her parents begin to panic as they realize their daughter is having difficulty breathing…

* * * * * * * * * * * * * * * * * * * *

Mary is having a severe allergic food reaction, one that could even be life-threatening. (See ANAPHYLAXIS.)

Imagine the stress when contemplating a trip to Walt Disney World with a person who has such an allergy. Danger lurks in every restaurant, buffet, and food cart!  Even less serious food allergies can trigger or worsen asthma, eczema, and other disorders. That’s not very magical.

Never fear, a new planning resource is available to allergy families! Meet Liz and Jeff from Allergy Free Mouse!

The Atlanta, GA couple first visited Walt Disney World in 2009 with their then-five-year old daughter, who has a severe (anaphylactic) dairy allergy. “During our first trip I made some notes about things to remember for the next trip and added to it after the trip,” Liz explains. They had packed a lot of food for the trip, “just in case,” but ended up driving home with most of it. “Once we realized how great Disney is with food allergies we knew we were going back.”

Liz continued to take notes on their next visit. By the time the family had made their third trip to Walt Disney World, she realized just how many notes she had taken and how difficult it was to work all those details into planning a safe and successful trip.

“We guessed that other people probably had the same difficulty, even with the help of Disney’s Special Diets Team,” she explains. “That’s when we decided to put together the website.”

“It’s her brainchild,” Jeff says, “I’m just the tech guy!”

Planning is the key to any successful Disney trip and that is especially true for first-time visitors with food allergies.

“We have a whole section for planning a trip that links to other areas of the site, so that the reader can find the tips and [restaurant] reviews,” Liz explains. “And we have some sections specific to the top eight food allergies as defined by FAAN (Food Allergy and Anaphylaxis Network).”

What are the top eight food allergies?

*Peanuts

*Tree nuts

*Dairy, casein & milk

*Eggs

*Wheat / gluten

*Soy

*Fish

*Shellfish

It is possible for one person/family to have multiple food allergies. “Some food allergies are really complex. Some are mild, and some are very severe, like ours,” Jeff says. “We’ve always encouraged [readers] to share experiences; to share different perspectives [on] different food allergies.”

In addition to trip- planning tips and restaurant reviews, Liz and Jeff offer tips on avoiding inadvertent allergic reactions, such as contact with furry Disney characters:

If your food sensitivity includes skin contact, be especially careful when Character Dining. The Disney characters love to hug, as they walk around and meet the diners, but they may be carrying allergens from other kids who may not wipe their mouths or hands before their time with character. Therefore, be aware of this, and wipe your hands and face after a furry hug.

According to Jeff and Liz, allergy families should prepare themselves for interacting with another important group of Cast Members – the Disney Chefs. “We always tell the chefs that they are the real reason that we’re there, not for Mickey and Tinkerbell,” Liz says. “They allow parents to have a true vacation thanks to their commitment and the time [they take] to make sure you have a safe meal.”

Photo courtesy of Chip & Co.

“Only the chef really knows what he/she uses when preparing the food, and they will be the one preparing your allergy free meal,” Liz says. “Try to be respectful of their time as they are managing a very busy kitchen…”

“…but always make sure you’re confident of the responses they give you,” adds Jeff.

“They will be taking time away from their other meals to prepare your meal,” Liz advises. “Remember to always be polite and that you can’t say ‘thank you’ enough! They are usually really happy to help, but thanking them really encourages them for the next person with food allergies.”

The couple has plans to further enhance the site, including the addition of restaurant reviews for Disneyland and theDisney Cruise Line.  “Our website is currently available on mobile phones via the web browser,” says Jeff. “We are going to make it available in a downloadable app for the iPhone, since you can’t always get connected while in the parks.”

As far as Liz and Jeff are concerned, their most important goal is to get the word out: guests with food allergies do have options when they visit the Disney Parks!

“Often, when we were discussing our Disney trips with other parents of kids with food allergies, we discovered that they didn’t know you could get Divvies cookies and French Meadow Bakery items at Disney,” says Liz. “We’re really excited to have the opportunity to reach out to parents [of kids who have food allergies] so they, too, can have a real vacation.” Liz enjoyed helping others so much, she decided to become a Disney Travel Agent with Pixie Vacations!

If you or someone you love has a food allergy, I recommend that you visit Allergy Free Mouse and let Liz and Jeff help you make the most of your Walt Disney World vacation!

 Thanks for reading!

~ Kathy

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Tips to Make Your Flight Less Stressful When Traveling with Prescription Medications

Here are some tips to make your flight less stressful when traveling with prescription medications:

prescription-bottles-and-pills

1. Make sure you take enough medication for the duration of your stay — and then some! Bring copies of your prescriptions with you, just in case.

2. Pack your medications in their original bottles. The bottles should have your name, your doctor’s name and pharmacy on the labels. Liquid prescription medication is permitted on all flights. Make sure that it is in its original package.

3. Make sure that the caps are tightly closed, and place the bottles in re-sealable plastic bags so the screeners can see them easily. (It also helps if the bottle opens and the pills fall out!) Do not put any other items in the bag. Any liquids or creams should be in different bags in case of spillage and possible contamination.

4. Place medications that require refrigeration in an insulated cooling bag. You might be able to get ice on board to keep it cool if it is a long trip. Label the outside with your name.

5. Put your medication bag in your carry-on luggage. If possible, put it in the bag that fits under your seat, as opposed to the overhead bin. In some cases, the airline may ask the on-board staff to store your medicines and syringes during flight. Keep your medicines, syringes, and supplies together in a small travel case to make passing them to and from the flight staff easier with less chance of losing medications or supplies.

6. If you are traveling to another time zone, you want to take your medication at your normal time. If your medication needs to be taken at a specific time during your flight, inform the flight attendant in advance that you will need some water when that time comes.

Wishing you happy and safe travels!

~ Kathy

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Book Review – 3500: An Autistic Boy’s Ten-Year Romance with Snow White

If you are a Disney fan and you are looking for a light summer read, I suggest you try 3500: An Autistic Boy’s Ten Year Romance with Snow White.

Ron Miles has penned a heartfelt memoir about his son Ben — a profoundly disabled young man with Autism who rode the Snow White’s Scary Adventures attraction in Walt Disney World thousands of times over the course of ten years. Through the loving eyes of his father we see how Ben’s experience with ‘Snow White’ dramatically engaged and delighted him — and even led to his first spontaneous use of words at the age of nine!

Without ever becoming heavy or depressing, the book takes us on a sometimes weird but always wonderful journey with Ben and his family as they navigate the strange world of autism and eventually discover that, for Ben, a trip to the Walt Disney World Resort that included multiple rides on Snow White was “one giant therapy session.”

“3500″ is filled with several tales of magical moments created for Ben and his family by WDW Cast Members over the years, most notably the story of how a group of Cast Members and fellow Disney fans ensured that Ben was the last person to ride the attraction before it closed permanently on May 31, 2012.

If you have anyone in your life who has been touched by autism, or even if you don’t — if you love hearing tales of “the magic” you will enjoy this book. I highly recommend it.

3500-cover

You can purchase this book in either paperback or digital formats on Amazon or on Ron Miles’ website.

Thanks for reading!

~ Kathy

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Differently-Abled Disney/Pixar Characters: How Many Can You Name?

Here’s a post I wrote awhile back that was featured on WDW Fan Zone. I thought you might enjoy it!

Just for fun, how many Disney (or Pixar) animated characters can you think of that are different or differently-abled in some way? I recently posted this challenge to a group on Facebook and, surprisingly, we ended up with a fairly extensive list! I started the list with a few characters that came to mind right away:

dumbo1

Dumbo came to mind because of his ears!

Nemo and Dory

Nemo had a “lucky” fin; and Dory had short-term memory loss

From there, the list of characters simply grew and grew! Here’s what we came up with — do you agree with them all? Why or why not?

 

Pinocchio – made of wood; no strings

Donald Duck – speech

Carl Fredrickson – mobility; used a quad cane

Grandma Odie (Princess and the Frog) – visually impaired

Quasimodo – (Hunchback of Notre Dame) anatomical deformities

Piglet – anxiety and stuttering

Abby Mallard – speech

Dormouse (Alice in Wonderland) – Narcolepsy

Mad Hatter – mental health issues

Hook-Hand Thug (Tangled) – amputee/hook

Long John Silver (Treasure Planet) – amputee/peg leg

Chip (Beauty and the Beast) – damaged teacup

Lilo (socially awkward) and Stitch (anger and attention/hyperactivity)

Fa Shu (Mulan’s father) – frail and disabled

Willie – giantism

The Seven Dwarfs – Dopey (speech) Bashful (social anxiety) Grumpy (anger management issues)

Finding NemoPearl, the octopus, inks herself when she gets nervous, the seahorse was H2O intolerant, the sharks were in a sort of addiction-recovery (“Fish are friends, not food) and Gill from the fish tank had traumatic injuries.

Timon and Pumbaa were social outcasts.

 

Well, can you think of any more? I’d love it if you would list them in the comments section!

Thanks for reading,

~ Kathy

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A Walt Disney World DAS (Disability Access Service Card) Trip Report

Here is a DAS (Disability Access Service Card) Trip Report from community member, Sharon R.! Sharon was too shy to be a guest on the podcast, so she decided to share via our Community Blog!

****************************************************************

Sharon Raday

Hi there. Our family went to Walt Disney World the week of 4/25/14 – 5/3/14.  I want to pass along some of our first-time experience using the DAS.

Our Background:

Our 10 year old daughter, Molly, has significant cognitive delays and is nonverbal (no diagnosis). She uses a Dynavox to communicate fairly effectively with us. We are so proud of her! Seemingly unrelated, she also has mild brittle bones, low muscle tone, and somewhat clumsy coordination… nice combo, huh. We also have an 8 year old typically developing son. Our family went to WDW for the first time together in the Spring of 2012, and had a wonderful time. The magic got us hooked for sure! We went back that October, and then I took my son for Star Wars Weekend last May, and then the whole family went back down to WDW last month.

Although Molly can walk, we typically keep her in a wheelchair for long distances, i.e. shopping trips & theme parks, due to endurance/fatigue concerns, especially since her sometimes poor coordination could lead to a fall, which would probably lead to a fracture. As a matter of fact, exactly 5 weeks before our very first trip in 2012, she had a mild fall and fractured her femur! We were unsure of how that would affect so many aspects of our trip. She got her cast off 3 days before departure, and it was a bit rough since we were not to allow her to bear weight on it. Swimming was tough, too. She wasn’t too heavy yet, so she was able to transfer to most ride vehicles by her dad carrying her over. She is not able to go on any of the thrill rides due to our fear of injury.  Keeping her in the wheelchair also helps keep her contained. On the rest of our trips, Molly gets out of her wheelchair to meet with characters, and to transfer to ride vehicles and show seats/ dining seats.

We easily obtained the GAC (Guest Assistance Card) for Molly on that first trip in 2012, and it worked wonderfully for us. Cognitively, there are many concepts that she will probably never grasp, and a long wait in a crowded queue is one of them. (She gets anxious and “grabby” when she becomes impatient, and we would spend a lot of our time reassuring her, “it won’t be much longer… hands down… , no grabbing … do not bite the back of your hand … hey, no smacking!” ) Due to all the buzz within the Disney community around the switch-over to the DAS card, we were very nervous in anticipation of our recent trip, so we did lots of “research” ahead of time. We learned a lot from the experiences of other visitors, and we were prepared with our strategy ahead of time. As it turned out, we got absolutely no pushback in obtaining the DAS card for Molly that first day at Animal Kingdom, and it was very easy to use. There aren’t too many headliners she is able to go on, so we didn’t need to use the card at an abundance of attractions. We used Fastpass+ for the rides our son is able to do with one of us, and we actually requested the rider switch card in many cases, while one of us waited with Molly. That worked well, too.

Our Trip:

We got my daughter her DAS card on Day 1 at Animal Kingdom (AK). Instantly, no issues. With the combination of attraction choices we made, FP+ and rides she simply cannot do physically, we only needed to use the DAS once that day, for Kilimanjaro Safaris. We had a big snag on Day 1 at AK: the Safari FP return line was very long. So after our 60 min DAS return time, we waited another 20+ min in the FP line before we even got to our special boarding area.

We did not request additional accommodations at Disney Hollywood Studios (DHS) on Day 2, nor did we have any issues that day. Using our family touring strategy of choosing low crowd times, picking recommended park days based on various blogs’ advice, and multi-tasking (Dad & son do thrill stuff, while Mom & DAS daughter do tame stuff), the day went fine using DAS return times in combo with FP+.

Without complaining, I relayed our AK experience to a Guest Relations Cast Member at Magic Kingdom (MK) on the morning of Day 3.  The nice CM (I assumed lead, based on his station location & no need to ask anyone permission) added 2 sets of freebie FP’s to all 4 of our MDE/bands for that day, to make up for the Safari experience.  (He said they are aware of that issue with the Safari and are working on it…) He typed and typed in the computer for AGES! He also said, the rest of the week, just let them know at GR that my daughter got some extra help at MK and she could get it again. Great experience with this!

Before leaving his desk, I also asked for a starter return time on the card, which he happily obliged. So we got an “Enchanted Tales with Belle” return time, and headed over. The CM there did not recognize the stamp “CH” and had to ask a coworker about it, who informed him that it was from “City Hall.” The first CM seemed surprised/confused to the point that I figured it was not as popular as I assumed, to ask for a starter return time at MK Guest Relations.

Things went great that day at MK. We had a special magical moment from a wonderful FP+ iPad CM (sorry, not sure what they are called, the ones with the blue shirts), which was completely unrelated to FP+ or DAS. Later that day, actually in the evening, while chatting with a line CM at Pooh, we saw a blue shirt CM, and chatted him up as well. My husband, really wanted to relay how he had been skeptical, but was pleasantly surprised how well the DAS/FP+ was working for us. (Lest he give Disney all the kudos, I need to also take some credit for excellent touring strategies, but I digress…  So the CM said, you are talking to the right person, thank you for your feedback, and he made some notes in his iPad, about our comments and about our experience with our magical moment earlier that day. The point of this part of the story is to say, that while chatting with him, I let him know that our FP+’s actually ran out, and he added them back on for us, no questions asked. AND, he said the freebie ones normally don’t work for character meets, but he added that ability for us. So we met a few princesses before we called it a night. (P.S. The CM clarified that the earlier CM was a light blue shirt, and he was a dark blue shirt… I did not notice this distinction, but evidently it matters!)

The next morning, at Epcot (Day 4), we had a different experience. At Guest Relations first thing, I relayed what the CM at MK’s GR said, about getting a little extra help, and I got some push back. She said it was probably only one-time help. I said, he typed extensively in the computer about my daughter, at MK, and please look into it, that he basically told us to request the same help the rest of the week. She behaved as though she could not find anything typed about us. I do not know if the MK Cast MemberM created a “file”, or what if anything, he typed about my daughter, but that’s the behavior I received. That the 20 min of time I spent at MK the day before was wasted, lost, no record of it. I didn’t know what to make of it, so I just pushed on about it, about my conversation with the MK Cast Member at GR, and after a few trips into the back, she brought me 8 paper “EPCOT Attraction Re-Entry Passes”, on which she wrote “DAS” across the top. So, we were on our way. As it turned out, the way our day was planned we did not use these. It’s a shame, too, because they were issued on May 1st, and stated “EXPIRES SAT MAY 1, 2014”.

So, our final day was at Magic Kingdom . I dread this part of the story, because I got so much push-back that I cringe thinking back to it. I did not like how I was treated, like I was gaming the system or something.  She said things like: the extra help was most definitely a one-time thing; do not expect it every time; that previous CM could not make that promise to me; etc. (I remembered his name, and relayed it to her, and the others during the week, and no one seemed to be able to relay to me what, if anything, he typed in on Day 3!) This CM brought other CM’s into the conversation to back her up, and even went into the back like 4 times and still came out sating the same thing. I didn’t budge, and pressed on about how [MK CM on Day 3] helped us and what he relayed to us, and finally she relented. My daughter was given 2 yellow slips, you know the “No Strings Attached” slips. I did end up requesting a starter return time, which she cheerfully (?) provided.

So, we had wonderful magical moments all over the place, but this is just to summarize our experience regarding what DAS accommodations we experienced:

Day 1:  we got the DAS for my daughter with no problems, and used it once. Return line was looong.

Day 3:  we got Fastpasses added to our account/magic bands, and a starter return time, at Guest Relations. Later that evening, we had Fastpasses re-added with the Character option added on.

Day 4:  we reluctantly received paper attraction “ re-Ads”, and a small lecture, but did not ask for a starter return time.

Day 5:  we begrudgingly received yellow “No Strings” slips, lots of attitude, and also a starter return time.

****************************************************************

Thanks for your submission to the Community Blog, Sharon!  It appears from everything I’m hearing that at this point in time, Cast Members at Guest Relations are less resistant to distributing Additional Accommodations such as ReAdmission Passes or “Starter” Return Times after the guest has attempted to tour with FastPass+ Reservations and the DAS and returns to Guest Relations sometime later in the day to then ask for additional help.

You are not alone in your experience with inconsistency among Cast Members regarding the distribution of Additional Accommodations.

 

Oliver

 

I certainly hope that your feedback to the “Dark Blue Shirt” Cast Member will find it’s way to Disability Services. It is inconvenient, not to mention unecessarily stressful, for guests with disabilities who are already managing extra challenges to have to return to Guest Relations repeatedly throughout their vacations!

To join our supportive community of Disney lovers on Facebook who either have or care for someone with special needs or disabilities, please contact me — Special Mouse Podcast  — and message me that you wish to be added to the group!  Sign up for our monthly community newsletter and receive my free gift to you: The Special Mouse Guide to Requesting Disney’s DAS.

Thanks for reading!

~ Kathy

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The Special Mouse Guide to Requesting Disney’s DAS Card

help

As host of Special Mouse: Unofficial Disney Parks & Travel for Your Special Needs, I receive many questions from listeners who are worried about requesting Disney’s Disability Access Service Card, or DAS.

One of the reasons there is so much confusion, anxiety, and apprehension surrounding the DAS is that there have been numerous conflicting reports from guests about their experiences with the DAS since it was hastily implemented in October, 2013.  Another is that the overall system for accommodating guests with disabilities at the Disney Parks in the U.S. has been a work-in-progress over the past several months.  Disney officials have been noticeably tight-lipped about specifying the full range of accommodations that can be provided, as well as when and why certain additional accommodations are not always “available.” 

When it comes to obtaining the DAS and subsequent access to attractions at the Disney Parks, the burden of responsibility now falls squarely on the guest who is requesting the accommodation.  That is why I have created a guide that will assist you with navigating the DAS process more effectively and, hopefully, with a lot less stress!

You can get this valuable guide absolutely FREE by subscribing to the Special Mouse monthly newsletter.  Don’t worry — I haven’t time to spam your inbox with daily information!

You will find the sign-up widget in the sidebar, RIGHT >>>>>>>>

I hope you enjoy your newsletter AND your Guide to Requesting Disney’s DAS Card!

Note:  The Guide contains images, so please check your “promotion” or  “bulk” folder! Also, the guides are mailed out in batches on the hour, so you will receive it within the hour of your request!

 

~ Kathy

 

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