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Down Syndrome Archives - Special Mouse - Unofficial Disney Parks and Travel for Your Special Needs Special Mouse – Unofficial Disney Parks and Travel for Your Special Needs
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Posts Tagged 'Down Syndrome'

Autism on the Seas and the Disney Cruise Line! 085

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Today’s guest is Dr. Rachel Potter from Autism on the Seas!

Dr. Potter is co-chair of the volunteer Advisory Team for Autism on the Seas. She is a Board Certified Behavior Analyst and currently serves as Director of the Graduate Teacher Education Program at Mary Baldwin College where she teaches graduate courses in special education, autism spectrum disorders, and applied behavior analysis.

Dr. Rachel Potter

Dr. Rachel Potter

She is a parent of two children, one of whom has autism.  She has cruised with Autism on the Seas as both a client (with her family) and as a Group Leader and she is here to chat with me about this wonderful organization and how it supports the autism community. Dr. Potter describes how she became involved with Autism on the Seas, first as a client family and later as a Group Leader on Autism on the Seas Cruises (including several on the Disney Cruise Line.)

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Autism of the Seas provides a number of different services to special needs families:

  • Cruises with Staff – We discuss the various kinds of supports they provide in kids clubs and during activities while on the cruise. Another big question is toileting issues, and staff ARE able to assist with toileting.  We also discuss the special boarding, mustering and debarking procedures available for clients with sensory issues who are supported by Autism on the Seas.
  • Cruises without Staff
  • Cruise Assistance Package
  • Resort Vacations with Staff –  Autism on the Seas staff are available to assist families at Walt Disney World!

 

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Please visit the Autism on the Seas website for more information. You may reach out to Dr. Potter directly via email. 

Thanks for listening!

 

Kathy

 

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Chatting with Kellie, a Disney Lover with Down Syndrome

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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!

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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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Cruising With Autism on the Disney Cruise Line – 033

Cruising With Autism on the Disney Cruise Line – 033

Our celebration of Autism Awareness Month concludes with a visit from Jackie Psarianos from The Autistic World of Disney blog. She and her family, including her 14 year-old son with Autism, have cruised eight times with the Disney Cruise Line and are planning their ninth cruise this summer!

600-Disney-Cruise-Line-Galveston

Topics include:

How the Disney Cruise Line accommodates families with Autism

Tips for planning a Disney Cruise with Autism

DCL Children’s and Teens’ Programs and Autism (Oceaneer Club, Oceaneer Lab, Vibe)

Dining on the Disney Cruise Line with Autism and special dietary needs

You can read Jackie’s blog, The Autistic World of Disney, and connect with her via Twitter , Facebook , and Google+

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This episode of Special Mouse is sponsored by Amy at Up and Up Travel, a Disney Travel Agency dedicated to serving travelers with special needs and disabilities.

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Tip of the Week:  I’ve recently begun listening to a podcast called Building Special Families, hosted by Jared Buckley, father of a 4 year-old girl with Down syndrome. This is an informative and inspiring show for parents of children with all kinds of special needs.  In his latest episode, Jared discusses Disney’s Frozen and the lessons he gleaned from the lyrics of the Oscar award-winning song, ‘Let it Go.’ It’s definitely worth a listen!

Disney’s Frozen Teaches on Social Isolation in ‘Let it Go.’

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Remember to sign up for our monthly community newsletter!  Sign-up via the link in the sidebar, right.

If you enjoyed the show, kindly subscribe to the podcast and/or leave a review in iTunes — it is much appreciated!

Thanks for listening,

Kathy

 

 

 

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