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Posts Tagged 'Epilepsy'

Epilepsy Awareness Day at Disneyland – 079

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Brad Levy, Event Director, discusses the 3rd annual Epilepsy Awareness Day at Disneyland – 11.05.2015

“This amazing day at Disneyland was founded to unite the epilepsy community, to bring epilepsy out of the shadows, and to stomp out epilepsy stigma. We can inspire a nation in which 1:26 people will have epilepsy in their lives by bringing awareness and stories of wonderful people working and playing together.”

  • RAISING AWARENESS
  • STOMPING STIGMA
  • UNITING EPILEPSY COMMUNITIES

…and providing days of inclusion and joy!

Epilepsy Awareness and Education Expo – 11.04.2015 – Disney’s Paradise Pier Hotel

The FREE expo was added to put patients and families together with Epilepsy professionals, in order to get everyone as much support as possible. The EXPO features over 80 Non-Profit support groups, several hospital Epilepsy Centers, Pharma companies, Epilepsy devices and more!

EADD

epilepsyawarenessday.org

Please visit the above link for official information about Epilepsy Awareness Day at Disneyland!

For event information, contact Candy Levy, Event Coordinator at candy@epilepsyawarenessday.org

For sponsorship information, contact Brad Levy, Event Director at Brad@epilepsyawarenessday.org

Thanks for listening!

Kathy

 

 

 

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Disneyland with an Autism Service Dog and More! 070

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Today’s feature chat is all about Autism service dogs. We’ve discussed service dogs at the Disney Parks and on the Disney Cruise Line in past episodes, but this conversation is specifically about Autism service dogs. So if you either have or are hoping to obtain an Autism service dog, you will definitely want to listen to this conversation!

My guests are Katie Wolfe, Placement and Training Director at Autism Service Dogs of America and Christine Johnson, who recently had an autism service dog from this organization placed in her home to assist her son. Christine tells us about the experience AND all about her family’s recent trip to Disneyland with their new service dog.

ASDA header

 

Our service dogs provide physical safety and an emotional anchor for children with autism. With their child tethered to a service dog, families are able to engage in activities as simple as going to the park or going out to eat as a family. When out in the community, a service dog increases safety and helps families feel secure. The service dog’s calming presence can minimize and often eliminate emotional outbursts, enabling the child to more fully participate in community and family activities. In many cases, the service dog accompanies the child to school, helping with transitions between activities and locations. Having a service dog helps increase opportunities for the child to develop social and language skills with others.

Visit their website at Autism Service Dogs of America.

 

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Tip of the Week:

Our family will be heading down to Walt Disney World in about 3 weeks’ time and this just happens to be our first vacation with multiple iPhones and an iPad. Billy is no longer interested in the more portable handheld video games, unfortunately, so he will be bringing his iPad with him to the Parks to entertain and distract him when waiting in the various lines that we are oh-so-familiar with.

And what with the need for the My Disney Experience app and social media apps and perhaps some use of the voice recording app that I would like to use for the podcast, I anticipate that we are going to be using up the battery life on our respective devices rather quickly each day.

So one of the items that I will definitely be packing with us for our trip is the 4-port USB charging hub that I gave to my husband as a stocking stuffer this past Christmas. This particular one is by the Sharper Image.

This device fits into any wall outlet, and features one 2.1 amp USB port for fast-charging tablets and three 1 amp ports for most other USB-compatible devices.

I’m planning to use this in our resort room, of course, but it’s extremely light and has a 5’long cord, so I imagine that I’ll be able to use it in the parks as well and I’ll only need one cord for all 3 of our devices.

 

Mousekeeping:

Some Walt Disney World news to share that will be of interest to guests traveling with a person who has a feeding tube and is making pre-paid dining reservations. As you may or may not know, many dining experiences at WDW require pre-payment of all meals at the time the reservation is made.  This applies to character buffets like Chef Mickey’s and the Crystal Palace, dinner shows like the Hoop-dee-doo Review, and family-style dining at restaurants like O’hana.

In the past, Disney Dining required that every person attending the meal be charged for the meal, including people who were not actually EATING the meal because they were tube fed. So, guests would have to appeal to the server at the time of the meal and request that the charge for the tube-fed person be removed. I’ve rarely heard of anyone being denied this request, but nevertheless, why should anyone have to spend time and energy doing this while on vacation?

So, official word given to Disney Travel agents is that Cast Members at the Disney Dining reservation system have been given the OK to employ a procedure to get around this policy.

How will it work?

First, Disney Dining will book the reservation for the total number of people in the party. They will book the adult or child with the feeding tube as an “infant” so that person will not be charged for a meal. Then Disney Dining will place internal notes on the reservation stating that one guest will not be eating due to special needs.

Please note that this is an internal workaround that applies to pre-paid dining reservations ONLY: it has nothing to do with the Disney Dining Plan travel packages which are attached to park tickets.

The advantage of this is new procedure is that it removes the awkward tableside negotiating regarding the check. A small change, yes, and one that you may argue has been a long time coming, but, it is a positive change nevertheless and one that I am happy to share with you.

* * * * *

We’ve been given a first look at this year’s Food Allergy and Celiac Convention that will be held at WDW on October 18, 2015.

The main event will be an Illuminations fireworks Dessert Party completely free of gluten and the top 8 food allergens.  The Dessert party will be held at the France Pavilion inside the World Showcase at the Epcot and theme park admission is required.  Visit Celebrate Awareness for information regarding ticket sales, travel packages, and more.

* * * * *

Registration is open for the 3rd annual Epilepsy Awareness Day at the Disneyland Resort in Anaheim, CA. This event is for people of all ages with epilepsy, their families and friends, and those whose lives are touched by epilepsy or who want to raise awareness for epilepsy.

This year the event will be comprised of a free Epilepsy Awareness and Education Expo held at Disney’s Paradise Pier Hotel on Wednesday, November 4th, followed by, “a day of excitement at Disneyland, paired with the gathering of 2500 guests, all wearing the event T-Shirts and waving their signs” at the Disneyland resort, Thursday, November 5th.  Please visit Epilepsy Awareness Day for more information.

Epilepsy Awareness Day Logo

* * * * *

The first-ever Special Mouse Podcast listener WDW meet-up is right around the corner! We’ll be gathering on Friday, May 22 at the Contempo Café, located on the 4th floor of Disney’s Contemporary Resort, from 4 to 6 pm. Quick service refreshments will be available for purchase and I’ll be supplying some allergy-free treats from Erin McKenna’s Bakery for us to nibble on. If you’ll be in the area May 22nd, I hope to see you there.

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And finally, thank you to all who supported the Kickstarter campaign to publish Walt Disney World with Autism: A Special Needs Guide! The project was fully funded on May 7th and if all goes as planned, the book will be available by the end of the year!

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Magic Kingdom TR: First Visit for Child with Multiple Special Needs 069

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Today’s feature is a magical one-day mini trip report from Wayne Cordova, father of a 4-yr-old Emmalee, who has multiple special needs: cerebral palsy, epilepsy, hypotonia (muscle weakness) and developmental delay. Wayne enthusiastically shares his trip-planning strategy and how he and his wife, Tina, structured their one-day visit to the Magic Kingdom so as to ensure a successful experience for their daughter. Emmalee was able to access her must-do experiences (meeting Mickey Mouse and Anna & Elsa and riding it’s a small world) with help of the DAS and the stroller-as-a-wheelchair tag.

 

Emmalee Disney 5

 

 

Wayne believes that parents of children with multiple special needs have access to numerous planning resources that can help them ensure successful Walt Disney World trips for their families. He shares some of his resources here:

“Easy WDW was the first Crowd Calendar I looked at” –  http://www.easywdw.com/category/calendar/01-january-2015-crowd-calendar/

“The first blog I read about the DAS card” – http://temporarytourist.com/wdw-disability-assistance-serviccard-das-walt-disney-world/

“I then turned to podcasts for some info… and found WDW Radio episode 384” – http://www.wdwradio.com/2014/11/show-384-10-things-need-know-traveling-walt-disney-world-special-needs/

“Which led me to your podcast!”

Special Mouse #045 – http://specialmouse.com/5-kids-2-das-cards-1-magical-walt-disney-world-vacation-045/

Special Mouse #050 – http://specialmouse.com/disney-das-card-survey-results-050/

(I’m thrilled that our podcast was able to help the Cordova family!) You can connect with Wayne and Tina here:

Tina’s Blog  http://tinacordova.com/

Wayne’s Blog  http://www.waynecordova.com/

Wayne’s Podcast  http://www.geekpastor.com/

Social:

http://Twitter.com/WayneCordova

http://Facebook.com/GeekPastor

* * * * * * * * * *

Tip of the Week:

The DAS system is expected to go digital this week at the WDW resort and there will be a slight change in procedure. Our tip is to assist you during the transition period.

Here is how it will work:

1.) Visit Guest Relations in any park and request the DAS – The person in need of accommodation will need to have the entire party present.

2.) The Guest in need of the DAS accommodation will have a picture taken and his or her name will be entered into the system. (Up to now, the procedure is the same as before.)  Now the information will also be placed on the guest’s MagicBand.

3.) To use the DAS, the Guest will go to an attraction and have their MagicBand read via the Cast Member’s scanner. The photo and information of the Guest needing the DAS will come up and the CM will verify that it matches the guest wearing the MagicBand.

The scanner will then provide a return time.

4.) Upon return to the attraction, the Guest who had the DAS assigned to them MUST scan his MagicBand first, followed by the rest of the party. If not done in that order, it won’t register.

The picture and name of the Guest needing the DAS will then be verified by the CM before the group will be allowed to enter the attraction.

 

Naturally, there may be a few bugs in the system during the first week or two, so today’s tip of the week to help you through the transition comes to us from two Special Mouse listeners.  Maureen says,

“As a precaution so we don’t lose them, I’m going to take a screen shot of my FP+ times before I load any DAS return times into the MDE app. I know they are supposed to be in two different parts of the system, but they still have issues with FP+ messing up and I don’t want to take the risk.”

And this is echoed by Sue, who says,

“We’ve used the MDE for Fastpasses on 4 trips now and we always take screenshots.

You can go back to view them in the MDE app whenever you want, but sometimes the wifi in the parks is better than others.

So, rather than use up phone power trying to connect to wifi or use phone data time, we just do screenshots at the beginning of the day and each time we make a change.”

* * * * * * * * * *

MY sincere thanks to all of you who have pledged to support the publication of Walt Disney World with Autism: A Special Needs Guide and for tolerating the many, many messages about it that I’ve been sharing this month on social media. I promise that they will stop on May 7th when the campaign ends!

If you or someone you know will be traveling to WDW with a teenager or a child on the autism spectrum in the near future, pledging to the Kickstarter is a way for you to pre-order the book so that you have it on DAY ONE of its release.

There are lots of additional rewards for pledging and so I urge you to visit the page before the campaign ends on May 7th and thank you again for your friendship and your support!

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~ Kathy

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