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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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Disney Frankness on Touring Walt Disney World with an ECV and Oxygen Therapy 048

Frank1

Frank Rogers, host of the Disney-themed vidcast “Mr. Frank’s Wild Ride,” discusses theme park touring with multiple disabilities. Some of the topics that came up during our chat are:

  • Using an Electronic Conveyance Vehicle (ECV) in the theme parks
  • Using portable oxygen in the theme parks
  • Disney’s accommodation of guests with disabilities
  • The importance of a positive outlook and a good support system for people with disabilities

Mr.Frank

Frank and his co-hosts deliver a healthy dose of “Disney Talk, Mayhem, and Mirth” on Mr. Frank’s Wild Ride, a podcast and vidcast. Check it out! Connect with him on Twitter @DisneyFrankness.

Frank asks that you kindly visit Thank You Walt Disney to learn more about the efforts that are being made toward the historical restoration of Laugh-O-Gram, Walt Disney’s first animation studio located in Kansas City, MO.

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Tip of the Week: This week’s tip(s) come from members of the Special Mouse Community Group on Facebook.

From Sam Tubbs: “Whilst we are all talking DAS, as a parent of two HF (High-functioning Autism) kids, I would just like to say “All hail Sorcerers of the Magic Kingdom!”
This was our God send. In fact-it even took over from wanting to ride!  It certainly kept us busy in areas whilst waiting for FP+ or DAS times to come up.”

From Sue Mickelson: “Here’s another one your kids might like: A Pirate’s Adventure: Treasures of the Seven Seas – an interactive game in Adventureland. We have not played it, but I have seen other people doing it and it looks like it might be fun.”

From Jeanette Lynne: “Wilderness Explorers at Animal Kingdom kept my kids very excited (even for my 13 year old.)”

The takeaway here is that it’s not only about “the rides!” Many children thoroughly enjoy playing these interactive games; particularly detail-oriented kids who find audio-visual elements of the games highly engaging.

The best thing? Participation is included in theme park admission.

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Don’t forget to enter our 50th Episode Celebratory Giveaway!

 Thanks for listening!

~ Kathy

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Cruising with OI and a Wheelchair on the Disney Cruise Line – 047

Mike_Greer

Mike Greer uses a wheelchair because of mobility issues related to Osteogenesis Imperfecta. He joins Kathy to discuss his experiences cruising with the Disney Cruise Line.

Mike, who hails from Ontario, Canada, has sailed on three of the four Disney Cruise ships to the Bahamas and both the Eastern and Western Caribbean. Some of the things we talk about are:

  • Pre-Cruise Planning
  • Boarding and Check-in
  • Accessible Staterooms
  • Safety Check
  • Accessibility around the ship/ship’s activities
  • Dining
  • Bahamas Itinerary/Accessibility of Port Adventures
  • Disney’s Castaway Cay Island
  • Accessibility of Shore Excursions on Castaway Cay
  • General thoughts about cruising with the Disney Cruise Line

Connect with Mike on Twitter and on Facebook.

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This episode is sponsored by by Scooter Vacationsthe only Orlando scooter rental company to provide concise weight ratings to ensure a 12-15 hour theme park ride time at Walt Disney World, Universal Orlando or Sea World.

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Our Tip of the Week comes from community member, Diane Leibold: “September is the best time of year to go to Walt Disney World. Less crowded and much easier on our special kids!”

(She really means it; her family is vacationing at Walt Disney World right now!)

I agree, Diane, and thanks for the tip! Our family’s first Walt Disney World vacation was in early September, 2003. And although we still had to battle the summertime heat, the crowd level was delightful. If your children are young enough so that missing a week of school isn’t detrimental, then do it! September at Walt Disney World is great.

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Join our awesome PRIVATE Facebook group by posting a request HERE. This is a friendly, safe place for listeners of the podcast to connect and share their thoughts on Disney travel with special needs and disabilities.

 

Thanks for listening!

~ Kathy

 

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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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What a Dog! Disney with a Service Dog 046

 

Lady and Tramp

 

Walt Disney World, Disneyland and Disney Cruise Line travel with your Service Dog.

Kathy is joined by Gordon LaGrow, an SNG-certified special needs travel advocate and owner of Vacation with the Magic. Gordon has abundant first-hand travel experience both at Walt Disney World and with the Disney Cruise Line accompanied by his medical service dogs, Tasha and later, Tasha 2.0.

   Tasha

Tasha 2.0

Some of the topics we discuss are:

1. What is the difference between a service dog and a companion dog?  What jobs do these dogs perform and in what ways do they help people with disabilities or health conditions?

2. What are some transportation considerations for guests traveling with a service dog — Veterinarian, TSA regulations, Documents, etc. Do trained service dogs need to be certified?

4. What are Disney’s specific policies regarding service dogs in the hotels, parks and on the cruise line?

5. Restricted locations/Break areas in the theme parks.

6. General tips: what to bring for a day in the park, how do you handle people wanting to pet your dog, the importance of ensuring that your dog gets adequate rest/hydration, etc.

You can connect with Gordon on FACEBOOK, TWITTER, GOOGLE+ and PINTEREST.

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TIP OF THE WEEK:  This tip comes from Facebook Community Member, Ashley Riggs: “Many resorts will allow you to ship essentials prior to your arrival, such as diapering items, wipes, dry goods. This will save you considerable room in your luggage! I plan to order using my amazon prime account, which includes free shipping right before our trip!”

Great tip, Ashley! Added tip: be sure the package is sent to the same name your reservation was made under.

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Thanks for listening!

~ Kathy

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5 Kids + 2 DAS Cards = 1 Magical Walt Disney World Vacation! 045

Walt Disney World with multiple kids and multiple special needs: Obsessive Compulsive Disorder (OCD), Social Anxiety, and Autism Spectrum Disorder (ASD).

Jeanette & Family

Jeanette & Family

Kathy chats with Jeanette, a fellow Jersey Girl (and R.N.) who is probably still unpacking from her family’s late summer vacation at Walt Disney World! She and her husband are the proud parents of: Brandon (13), Madison (9) who has Social Anxiety and OCD, Kate (8), Bree (7) and Brian (5) who has Autism Spectrum Disorder.

In this episode, Jeanette gives a trip report from the family’s WDW vacation in August, 2014.

(Intro music to the segment is “Go With the Flow” from Finding Nemo: The Musical, which can be seen at Disney’s Animal Kingdom park.)

The family had a short Universal-based vacation this past December, 2013, and had the opportunity to attend Mickey’s Very Merry Christmas Party (MVMCP) at the Magic Kingdom. At that time, Jeanette feels that the crowds and the inability to utilize FP+ had a negative effect on their experience at the Magic Kingdom, resulting in multiple meltdowns for her two special-needs children. This made her quite apprehensive about their upcoming Walt Disney World vacation. We discussed planning for the August vacation, particularly the use of the new FastPass Plus reservation system and the DAS, Disability Access Service Card, system.

Jeanette was pleasantly surprised at the ease with which she was able to obtain the Disability Access Service Card for her two children. A DAS card for each child gives the family of seven the ability to split up and continue to provide accommodation to their special-needs kids (or, to allow Jeanette the ability to return to the resort with one or more children if they have become overwhelmed and need a break.) She had made a point of contacting Disney’s Disabilities Relations Department and listening to the Special Mouse podcast in advance of her trip in order to familiarize herself with the Disability Access Service Card program.

We discussed Jeanette’s impression of their resort, Disney’s Old Key West, including the spaciousness of the accommodations and the quality of the resort and internal bus system.

The recurring theme of the trip report is that, despite the most attentive of planning, the family had a positive and enjoyable experience primarily because the parents adopted the attitude of flexibility and “going with the flow.”

Bree & Brian Jr. chatting with Elsa

Bree & Brian Jr. chatting with Elsa

Thanks, Jeanette, for sharing your trip and your lovely family with us!

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This episode is sponsored by Amy at Up and Up Travel, specializing in helping families with Special Needs and Disabilities plan and create lasting magical memories , and by Scooter Vacationsthe only Orlando scooter rental company to provide concise weight ratings to ensure a 12-15 hour theme park ride time at Walt Disney World, Universal Orlando or Sea World.

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You can connect with Jeanette on Facebook HERE.

Join our awesome PRIVATE Facebook group by posting a request HERE. This is a friendly, safe place for listeners of the podcast to connect and share their thoughts on Disney travel with special needs and disabilities.

Thanks for listening!

~Kathy

 

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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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The Law of Attraction and Air Travel with a Power Wheelchair – 044

airplane-sunset-300x217

 

Kathy discusses special-needs Disney travel and the Law of Attraction, plus air travel with a power wheelchair on this “solo flight” episode! 

There’s no guest this week, so as Mr. Incredible would say, “you’ve got me monologuing!” I’m acting on one of the takeaways from Podcast Movement and giving you an actionable tip about keeping a healthy attitude towards travel with additional challenges by observing the Law of Attraction. In a nutshell: stay positive so you don’t attract negative stuff!

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This episode is sponsored by Amy at Up and Up Travel, specializing in helping families with Special Needs and Disabilities plan and create lasting magical memories , and by Scooter Vacations, the only Orlando scooter rental company to provide concise weight ratings to ensure a 12-15 hour theme park ride time at Walt Disney World, Universal Orlando or Sea World.

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One of the best things about the Special Mouse Podcast community group on Facebook is that it gives listeners a chance to ask travel questions of, and give valuable insight to, other members of the group. It’s especially helpful to hear from experienced Disney travelers who share your particular challenges. Recently we had a question that I thought would make for an excellent show topic so, here we go:

Tricia asks:  Hi everyone! It looks like our next Walt Disney World trip is going to be a little more special than expected — my sister-in-law and our niece are going to join us! Our niece has cerebral palsy and uses a power wheelchair. We’re not worried about her once we get to WDW, but has anyone had any experience with flying with a wheelchair? Will the airline let her stay in her chair for the flight, or will he have to transfer to an airline seat and check the chair in the baggage hold? Thanks!

The Air Carrier Access Act (ACAA) and the Americans with Disabilities Act (ADA) mandate all airports and airlines operating within the United States to be fully accessible to disabled travelers and for their assistive equipment. With few exceptions, power chair users should expect to receive these accessible services:

  • Wheelchair accessible parking near the airport terminal
  • Shuttle service to parking lots, airport terminals, and/or hotels
  • Access to  ticket kiosks, baggage check areas, security checkpoints, etc.
  • Accessible restrooms throughout the terminal
  • Complimentary wheelchairs for passenger use, as needed
  • ADA-compliant wheelchair ramps and/or mechanical lifts
  • Preferential pre-boarding and priority seating
  • Storage for power chairs, scooters and other devices
  • Assistance with luggage, boarding and deplaning

It is my understanding that travelers who use wheelchairs, whether motorized or not, are required to transfer to a seat on the plane and check their motorized wheelchairs as baggage. The airline may provide a folding wheelchair to help squeeze through the narrow airplane aisle.

Special Mouse listeners chime in with their advice:

Paula writes: “She can stay in the chair until boarding. They will gate-check the chair at no charge to her. I would take off anything that is removable and carry it on with you (no charge for that either). I would also take a picture of all sides of the chair. I’ve never had anything happen to mine, but it is always better to be safe than sorry!”

Tracy writes:  “Call the airline before your flight date to talk about their procedures and what you need to do when you get to the airport. Ask where you need to check the chair.

Once you get to the airport, you will fill out paperwork asking several questions about the chair such as color, weight, type of batteries, etc. You should note any damage or wear and tear when checking the chair in.

Take pictures of the chair before you get on the flight.

Take anything off that is detachable…seat, foot rests, headrest, etc. Stow these items inside the plane with you.

Give them instructions about how you want the chair to be treated. Bill has a custom back and we tell them specifically to NOT detach the back. I got some of the blank luggage tags at the airport and wrote, “Do not remove back” and placed them on several parts of the chair.

Know how to turn the power off and on and how to disengage the motors to be able to put the chair into manual, they might ask you how to do this. We don’t mind if the airline keeps the power on to get the chair down on the tarmac; Bill turns it down to the lowest setting. Some people prefer to have them not use the power but some power chairs are extremely hard to push in manual so we don’t do that.

If the person is unable to walk there are aisle chairs to help. I am unsure how much the flight attendants can help since I am able to lift Bill and put him in a seat.”

(The answer is, no. Flight attendants are not required to assist you with transfers to either your seat or to the restroom. And in truth, you wouldn’t want untrained individuals assisting with transfers because they could hurt either you or themselves in the process. – Kathy)

“You will be one of the last people of the plane. I gather our belongings including all the detachables and place them just outside the plane door. When the chair arrives they will be ready for me to get Bill and go, but I take time to look over the wheelchair to make sure everything is okay. After re-attaching everything I place Bill in the chair. Once we are clear of the gate Bill makes sure that the chair drives correctly.”

Matthew writes: “I would add a few more things, as I have had my chair damaged when I went to Disneyland and Disney World. Trust me, you don’t want to get to the parks and have a power wheelchair not work. Take the control/joy stick off when she boards the plane, also take the cushion as she may be able to use it in the plane or you can put it in the overhead compartment. Dis-engage the drive motors when she gets out of the chair, it should have a lever on each motor.”

From wheelchair.com: It is very important to know how to disconnect the power from the batteries when you get to the aircraft. Locate the cable and mark each half of the connector with yellow tape. Practice separating and reconnecting the connectors. This may keep them from pulling your batteries out of the chair. If you cannot disconnect the joystick on your chair model, you may want to consider bringing along some bubble wrap and packing tape to protect it and any other areas that are likely to become damaged.

“When they bring the chair to you, look it over before you accept it. I have had damage done to part of the frame of the chair that I didn’t see, but my daughter did. So due diligence is needed when flying.

The airlines will ask what the chair weighs and also what type of battery it has. I would recommend having the information before you get to the airport. Always check in with the gate personnel when you get to your gate, as they will need to know if you need an aisle chair and what they can do to help you get to the seat, and the information about the chair. It can become stressful flying when your use a power wheelchair, but if you just do these few things and remember to have fun, you will make it much easier. I have found out that the more I fly, the easier it gets and the less stressful it becomes.”

From sath.org (The Society for Accessible Travel and Hospitality): There are two types of batteries used in motorized wheelchairs: wet acid batteries or dry cell (gel) batteries. If your wheelchair is older and has a wet acid battery you should check with the airline, as a leaking battery inflight can be dangerous. It will be necessary for baggage handlers to remove the battery and place it in a special container. This requires that you be at the airport at least three hours before departure.

Most modern power-operated wheelchairs have some form of dry cell safety battery so that they can be carried without risk of damage to the aircraft. However, it may be necessary for baggage handlers to disconnect the leads from the terminal and to cap them to avoid shorting. This may take some time, so you will have to preboard. It may be necessary to transfer you to a special aisle wheelchair in the air terminal, and be prepared for the fact that there may be a delay on arrival before your chair is available.

The airlines are responsible for ensuring that your battery is reconnected and that your chair is working on arrival at your destination.

Regarding the weight of your power chair, this is very important information because airlines have varying limits when it comes to weight. Each airline should be able to tell you whether the weight of a particular model wheelchair falls under the limits at the time of your ticket purchase.

In the event of a problem with airport or inflight personnel, you should require them to contact the Complaints Resolution Officer (CRO), who must always be available and willing to deal with your grievance. They cannot refuse. However, to avoid problems, make sure that you let the airline know your needs as early as possible. Also, make sure you have adequate insurance to cover damages to or loss of your wheelchair or scooter as well as personal injury.

Under the ACCA, U.S. airlines are responsible for all repairs to damaged wheelchairs. However, if the chair is lost or damaged beyond repair, the airlines are only responsible for the original purchase price. Therefore, it’s a good idea to know both the purchase price and the replacement cost of their assistive devices and to be aware of the difference between these two figures. If the difference is substantial, you may want to carry additional insurance with a high deductible to cover this gap.

It’s also important to remember to report any damage to your wheelchair immediately. In most cases this means before you leave the airport. The airline may deny a claim if they feel it is not filed in a timely manner. Additionally, under the ACCA, airlines are not required to respond to complaints that are more than 45 days old.

If you are unwilling to risk damage to your power wheelchair there is another alternative — if possible, don’t bring it!

Skip writes: “I cannot fly commercial with the power chair. We take the Convaid stroller on commercial flights.”

The bottom Line: Do what is best for you!

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Links:

How to Travel by Air with a Wheelchair – sath.org

Air Travel Tips for Power Wheelchairs – wheelchairtraveling.com

On a Wing and a Prayer: Protecting Your Equipment – barrierfreetravel.net

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These were some valuable tips! If you would like to join our private group on Facebook, email me at specialmousepodcast@gmail.com.

Thanks for listening!

~ Kathy

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Sailing to Greece with Autism on the Disney Cruise Line – 043

Sailing to Greece with Autism on the Disney Cruise Line – 043

Guest Jackie Psarianos reports on her family’s recent Mediterranean sailing on the Disney Cruise Line, including multiple shore excursions in Greece!

Jackie’s family had previously sailed eight times on the Disney Cruise Line, enjoying all four ships in the fleet.  Her teenage son Andrew, pictured below, has classic autism. According to Jackie, “Andrew knows all the ships and can take you from bow to aft in a flash, with great ease and certainty, while stopping for some soft serve ice-cream along the way.”  That level of familiarity allows Andrew to move about the ships with a greater sense of independence as he becomes older and provides Jackie with a much-needed sense of security.

Of particular interest is the family’s overwhelmingly positive experience with the shore excursions booked through Disney. We discuss their visits to the Athens Acropolis, Rhodes, and Mykonos, as well as their tours of the ancient sites of Ephesus and the stadium at Olympia.

Having informed Disney ahead of time of Andrew’s sensory and behavioral challenges associated with autism, Jackie was delighted when many of the guides made her son feel valued and important by giving him the opportunity to lead the tour group by holding the Mickey Ears sign.

 

Andrew P.

 

We also discuss Jackie’s plans to apply for the 2015 Disney Parks Moms Panel, hopefully as a Disney Cruise Line specialist! The Disney Parks Moms Panel has answered countless questions from travelers planning Disney Parks and Cruise vacations since 2008.

You can read more about Jackie’s adventures on the Disney Cruise Line on her blog, The Autistic World of Disney. Connect with her on Facebook @Jackie Psarianos and on Twitter @JackiePsarianos.

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Please let me know if you are interested in joining our super-supportive private group on FACEBOOK! Email me at specialmousepodcast@gmail.com. You can also send any questions, comments or suggestions for future show topics to that address.

Thanks for listening!

~ 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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Disneyland Paris and Wheelchair Accessibility -042

ChrissyR

Guest Chrissy Roulet describes her experiences using a wheelchair at Disneyland Paris. She and Kathy compare and contrast Disneyland Paris’ system of accommodation with that of Walt Disney World, namely, that guests are required to provide written “proof” of disability at DL Paris — which in the American theme parks is prohibited by the ADA (Americans with Disabilities Act).

Here is a video link that offer more information about Disability Services at Disneyland Paris: Accessibility at Disneyland Paris

Here is information for guests with disabilities from the official Disney website: Visitors with Disabilities or Special Needs 

We also discuss how Chrissy is coping with and adapting to the diagnosis of hypermobility syndrome, a painful and less commonly known invisible disability, and how it has changed her method of touring and experiencing the Disney theme parks.

Hypermobility syndrome facts from MedicineNet.com:

  • The joint hypermobility syndrome is a condition that features joints that easily move beyond the normal range expected for a particular joint.
  • Hypermobile joints tend to be inherited.
  • Symptoms of the joint hypermobility syndrome include pain in the knees, fingers, hips, and elbows.
  • Often joint hypermobility causes no symptoms and requires no treatment. Treatments are customized for each individual based on their particular manifestations.

Visit Chrissy’s blog, Disabled in Disney, on Tumblr. Connect with her on Twitter @DisabledDisney.

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This episode of Special Mouse is sponsored by Amy at Up and Up Travel, a Disney-dedicated travel agency that specializes in planning vacations for guests with special needs or disabilities, and by JoEllen at Orlando Scooter Rental, Serving Disney World & Universal Orlando – All Hotels, Resorts & Residences.

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I would greatly appreciate it if you would take a moment to review Special Mouse on iTunes!

Thanks for listening,

~ Kathy

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The Easy Guide to Your First Walt Disney World Visit with Dave Shute – 041

The-easy-Guide

 

Dave Shute, creator of Your First Visit discusses the process of writing  The Easy Guide to Your First Walt Disney World Visit with fellow theme park strategist, Josh Humphrey, creator of Easy WDW.  The book was tailored-made to meet the needs of the first-time (and perhaps one-time) visitor to the Walt Disney World Resort in Orlando, Florida. 

Dave shares a few tips on saving “time, money and effort” when planning a Disney vacation and in our discussion we emphasize the importance of pre-trip planning, especially for guests with special needs. This is the first 2014 WDW guidebook to include comprehensive coverage of FastPass+ system, “with sample itineraries and simple instructions for designing your own.”

The book, published by Theme Park Press,  is available at AMAZON.COM in both Paperback and Kindle formats. 

Since Josh was not available to join in the show, I’ve highlighted his website, EasyWDW in our Tip of the Week feature. I’ve used his free crowd calendars as part of my Walt Disney World trip-planning for years and they have never steered me wrong!

You can connect with Dave Shute on Twitter @yourfirstvisit and with Josh Humphrey @easyWDW.

Thanks for listening!

~ Kathy

This episode of Special Mouse was brought to you by Amy at Up and Up Travel – a Disney Travel Agency dedicated to assisting guests with special needs, and by Scooter Vacations – serving Walt Disney World and Universal Orlando.

 

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Jeffrey Ashe on Disney Vacations, Vlogging and Living with Miller Nager Syndrome – 040

Disney “Maniac” and self-proclaimed “Character King” Jeffrey Ashe is the host of a YouTube video blog, A Day In the Life of Jeff.  Because he uses a tracheostomy tube to breathe, Jeff chats with Kathy about his love of Disney using a communication device that turns typed words into sound — very cool!

Jeff poses with Belle in Epcot:

Jeff-Belle

 

For more information on Nager and Miller Syndromes, visit FNMS – The Foundation for Nager and Miller Syndromes, “an international support group dedicated to helping those affected by these two similar and extremely rare, genetic conditions which involve moderate to severe facial and limb anomalies, but do not usually affect intellect.”

Jeff REALLY wanted to share this picture of his dog, Nelly!

Jeff-Nellie-Raft

Jeff invites you to visit his You Tube channel: A Day in the Life of Jeff. 

Connect with him on Facebook and Twitter, too!

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Instead of the usual “Tip of the Week,” Kathy discusses her reaction to the divisiveness among the Disney-with-special-needs community by addressing a statement made by a recent visitor to Disneyland —  “I feel such guilt that I’ve manage to make the DAS work for my son while others are still struggling.” 

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This episode of Special Mouse is brought to you by Up and Up Travel, a Disney-dedicated travel agency that specializes in planning vacations for guests with special needs and disabilities.

And by Orlando Scooter Rental, serving Disney World and Universal Orlando – all hotels, resorts & residences.

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Please join us on Facebook; we have a private group for discussing topics of interest to those with special needs and health challenges who plan to visit the Disney Parks or cruise on the Disney Cruise Line!  Please visit the Public Page and comment that you would like to joint the private group.

If you would like to be a guest on a future episode of Special Mouse, send an email to specialmousepodcast@gmail.com.

Thanks for listening!

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…

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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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