Q&A with Peter Shears-British Special Needs Activist

 

 

Q&A with Peter Shears-British Special Needs activist

As you well know by now, this blog deals with the different aspects of blending travel and autism. In the last few years, a new trend has emerged in the travel industry known as Volunteer Travel, which successfully combines the exploring of countries while helping the local population in their fight against poverty, diseases and other socio-economical problems. This interview describes (in their words) the plan of two young English students on a mission.
Peter and his friend David are starting out from Munich in late June, and will be travelling around the post-communist Eastern bloc,  to raise awareness to the plight of over a million special needs minors in countries such as Romania, Hungary, Kosovo and Serbia.

 

 

 

What are the reasons that made you decide to go on your trek?

Well, the actual idea started about three months ago. We had bought tickets to a music festival in Germany and planned to continue traveling for a few weeks, after the festival.
However, two days after we purchased our tickets, my brother, who is severely disabled, was hospitalized with a stomach bug.  Most of us would recover after a day, but due to his disabilities, he couldn’t fight it and was hours away from dying.

What ended up saving his life, were the qualified the medical staff and equipment he received while in the hospital. That got me thinking about children with the same needs and troubles as my brother, but without access to the treatment and facilities that saved his life. I’d seen feature films on the troubles facing physically challenged children in Eastern Europe before, so I suggested to my friend and partner, Dave that we visit and work as volunteers at institutions that deal with such children while documenting our journey.

Why did you choose to include these particular countries?

The map we have up is only a rough draft. We chose a selection of some of the poorer countries in Europe and set about trying to find institutions to visit. So far, it looks like we’ll be spending most of our time in Romania, Kosovo, and Serbia with brief stops in Bulgaria, Bosnia, and Hungary.

 How does one prepare for such a journey?

We’ve done a bit of physical endurance training, so on average, we walk about 5 miles a day. That’s been the easy part. Getting publicity to our trek, and finding institutions has been the hard part. We decided to split the roles—I’ve taken the PR part and tried to advertise the trek as much as possible including contacting local media sources, the Facebook group, and handing out flyers.
Dave has taken on the role of finding institutions and has worked incredibly hard, sending countless e-mails and making numerous phone calls. Eventually, our persistence and hard work have paid off, and we’re happy with the publicity and contacts we’ve gained.A special mention to Amy Brett, Lucy Wallace, and Marija MJ for all their help with our trek.We could not have done it without them.

I understand you are traveling with a partner—could you please introduce him to our readers?

David Parlour, like me, has a physically challenged sibling and his mother and works in close collaboration with physically challenged children, so it’s a cause close to both of our hearts. A student is studying at Keele; he’s admirably split his time between his studies and preparing for the trek, as well as bankrolling the majority of the trip.

What do you expect to accomplish by your trek, and do you see any others in your future?

We hope to bring the plight of these children and the amazing work done by those who help them into the mainstream media’s attention. It surprises me that even though there are so many charities about, and yet we hear so little about these people and children.

Hopefully, this will spur people on, to donate and help any way they can. We’ve discussed doing treks in Asia and Africa in years to come, but there’s nothing at all being prepared just yet. All we can say for sure is this is going to be a life-changing experience, and we hope others will follow in our footsteps.

 

 


Q&A with Keri Bowers Film Producer and Autism Advocate

What made you decide to become a filmmaker?

I have been a disabilities advocate for 21 years doing many things to improve options and quality of life for kids with disabilities, their families, and professionals. But I can’t take credit for becoming a filmmaker. It is my son who was the muse and inspiration behind our first film, “Normal People Scare Me.”

Q&A with Keri Bowers Film Producer and Autism Advocate

photo credit Keri Bowers

On the eve of Taylor’s 15th birthday – which is also Christmas Eve., Taylor was involved in a holiday giving a project. I had always used community service as a way for Taylor to learn to relate to others, learn skills, and “think” about what helping others means. For over ten years, he had volunteered in many capacities in community giving. That particular year, Taylor surprised me when he said to me “Mom, this year I want to pay for the gifts .” I was stunned.

 

What a great lesson he had learned over the years!

“What can I do to earn some money, mom?” he asked. “Well, you can clean the swimming pool,” I suggested. With a sigh, a gasp, a roll of the eyes, and heavy breath (a typical reaction for a teen,) Taylor retorted “Nagggggggh! I want to make videos and sell them.”

As a former paralegal in the entertainment business, I had an idea what it takes for someone to make a movie, a record, or create success by writing a book. So I replied, “Taylor, you can’t make a movie! You need to go to college. You need to know how to do it…” Blah, blah, blah, I went on a diatribe about why a kid could not make a film. And then, I caught myself. As I turned and looked at Taylor, so trusting of my words and my attitudes, staring at me, believing me, a thought raced through my head… “Yea and they said you might never walk or talk, and we sure showed them.”

I took a breath and said, “Taylor, everything… everything I just said is a lie. It is not the truth. You can make a movie. I don’t know how to do it, but I will help you to get it made if it’s what you want to do.” He was now smiling. “I understand that people should write about – or create a film about what they know. You and I know autism;  how about that for a topic?” I asked. “Yea, I know autism. Okay.” He replied. That night he came to me and said, “Mom, I want to call the film Normal People Scare Me.” And the rest, as they say, is history.

Within one week, the universe presented Joey Travolta to us, and within a month, he had agreed to help mentor Taylor to make (at first) a student short film. The film’s screening at a local high school where Joey’s daughter Rachel was a senior was so successful it got awards and press attention. A couple of articles in the Los Angeles Daily News brought in an email from all over the world. Within months, we began filming the feature, 90-minute version of Normal People Scare Me.

Q&A with Keri Bowers Film Producer and Autism Advocate sleepy kids

Photo credit Keri Bowers

How did becoming a filmmaker change your view about traveling and new people?

With the tremendous success of the film, we were asked by organizations, hospitals, colleges, Universities, and other agencies all over the world to come and screen our film and often, facilitate “mom and son” talks and workshops. Taylor and I had previously traveled to Canada, Europe and short trips to various places in the US, and each time we had issues – sometimes major issues – with different aspects of travel. Long lines, waiting our turn, being on time (many arguments about this one), losing items or leaving them behind, etc., but nothing could prepare us for the learning curve of traveling as advocates on a regular basis.

Airlines, flight attendants, hotel personnel, taxi’s, subway systems, currencies, food, etc., presented daily challenges for Taylor and me.

Taylor is 6’10”, and even so stature was often an issue as well (small seats on planes, beds, and door jams that are often lower in some countries.) It was clear that we both needed to learn and adapt to new strategies for the “rules” of travel, including how and what to pack, how little – how much, etc. But many other things were even scary for us. On several occasions, TSA officers got in our faces and asked us to “step aside” because Taylor responded to a question in a “weird” or “suspicious” manner. Then there were the times in Chicago, Manhattan, London and (a few others) when Taylor got lost, sometimes for hours! And then there were the times we nearly missed flights because Taylor needed to use the restroom at the last minute as the plane was boarding.

Then there are the arguments.

We’ve had many – and still do, over what I call his “ism” and rigid thinking, and my need to – oh, say – not miss that plane; or not want to pay for a new telephone charger he left behind…

Once, Taylor left his backpack on the bullet train in Japan containing over $600 worth of college books that Taylor insisted on lugging around Hiroshima. He never meant to read any of them but insisted “They needed to be in there mom, or I will lose them” But Taylor, they will be right where you leave them on your bed when we get back.” He insisted they needed to be with him. Again, this is his rigid thinking.

Q&A with Keri Bowers Film Producer and Autism Advocate chalk festival

Photo credit Keri Bowers

We have developed many strategies, some that have worked very well, and others, not so much. It’s a trial and error thing. I could go on to write a book on this subject or make a film – which is already in the planning stages called “Autism Travels.” But here’s a short list of 8 things a parent can do – and practice doing over and over, if necessary, to help with travel.

Never over pack!.Also, carrying bulky luggage adds tremendous stress, expense, and weight to your travel and anything that is not calming should be eliminated wherever and whenever possible while traveling.

Put your name and number on any electronics, computer or game gear, beach towels and other things that get lost or stolen. I suggest that the words “My child has (name disability). If you find this item, my son lost it. Please call…” A lot of people will be more likely to return things if they feel connected to the seriousness of the loss.

Call ahead at least 24 hours to the airport and tell them you will be traveling with your child. Ask them what special accommodations they can make at the airport for your child’s individual needs (lines too long, etc.) Call ahead to request special seating on planes, in restaurants; to seek special hotel accommodations, to places you will be visiting (sightseeing, museums, parks, etc.) Though not all will accommodate you, many are happy to support accommodations – we’ve even been given free stuff (food, tickets, etc.) because people want to help others in need. Calling in advance helps you know what to expect, and also takes that off your “to do” list while at your destination.

Have your child carry a “lost and found” card. You can make it on your computer and laminate it. I like the kind that says something to the effect: “I have (name disability). If you are reading this, I am lost. My parent’s names are.List contact information, where you are staying, some someone back home (just in case your cell phone dies, or you are out of cell service for example.)

Q&A with Keri Bowers Film Producer and Autism Advocate family hug

photo credit Keri Bowers

You should always carry with you a written itinerary and directions of where you are staying as well. Keep a short, written note attached to your plan – and on your person at all times explaining your child’s condition just in case something happens to you, and you are unable to speak for yourself. The itinerary can help others who may encounter your child and your emergency situation while you are traveling to understand at least something about your child at a glance.

Bring something memorable and comforting for your child from your home. A  special blanket, small pillow, small stuffed animal, a favorite small framed picture; something that can fold and packed. When you get to your hotel or another lodging, if you can, get into your hotel room before your kid does. Have someone traveling with you watch him/her in the lobby or distract them at the door long enough to get into the room to place the “surprise” item on their designated bed. Then make a grand entry and say to the effect “Look what’s on your bed! How’d that get there?”

Parents should try to establish familiarity in the new environment. Bring a small “sensory bag” on the airplane. Don’t just bring the toys, game gear, computers and other things parents naturally bring on trips, but rather a ‘sensory’ bag contains things that calm with touch, smell, squishy things, etc. Things like a brush; a squishy toy, a mirror for viewing emotions, a small puzzle, special socks or slippers, or a washcloth to wipe off tears.

Know Your Destination. Once you decide where you are going, research the area(s), local transportation, review local maps, and everything else you can think of in advance. Sitting in your hotel room and saying, “where do you want to go now?” or asking the Concierge about theater tickets at the last minute causes stress for everybody.

What is the message you want your audience to discover in your films?

The central message of my film is hope.

Expect miracles. If it appears that you are not getting “your” miracle today, delight in someone else’s miracle. Together, my films have over 100 interview subjects in them. Young, old, boys, girls, men, women, some with lower abilities and others with higher abilities (there’s never really a way to say that and be politically correct for everyone is there?) On one level or another, audiences will relate to at least one subject in my films. It’s always good to relate isn’t it? My films are meant to educate, inspire, connect, make people laugh and cry, but most of all, to let people (you) know you are not alone in this thing called disabilities.

Q&A with Keri Bowers Film Producer and Autism Advocate hug mom

Photo credit Keri Bowers

What would be your ideal film location if money was no object?

I want to go on an autism cruise to shoot it! All my life I have loved to sail for fun. Now I’d like to travel and work! Presenting my films and workshops for family enrichment while on board – all while filming it all for my travel film project would be ideal.

What would be your advice to our autistic travelers?

Learn to be “zen” – at one – with travel. Keep your breathing regulated, and breathe into the experiences good or bad. Show your child you are calm and in control – even if they are not.

Traveling with a child with autism and other disabilities can be hard. Small situations can turn big, loud and ugly fast. Keep your wits about you. Have a friend back home whom you can call day or night at the “ready” to take a call from you and (in advance) agree they will not engage in your problem, but rather help you to relax around whatever the problem is.

In other words, a support system to keep you calm, focused, and ready to solve your challenges and not build them bigger than they are.

 

 

Q&A with Keri Bowers film producer of 'Normal people scare me'

Keri Bowers is a filmmaker, consultant, author, and workshop leader in disabilities advocacy, with a specialty in autism. Films include “Normal People Scare Me”,”The Sandwich Kid,” and “ARTS”. Books include “Mapping Transitions to Your Child’s Future,” and “Single Pregnancy, Single Parenting”.She is is Currently working on a new movie about autism and sexuality ‘Desire’.

 

 

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Q&A with Clive Ireland’s Autism Service Dog Extraordinaire

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire tulips

 What qualities are recommended for an assistance dog?

Assistance Dogs need patience, a sense of fun, a willingness to play and a great sense of responsibility. Assistance Dogs need to love children and accept and understand that they are working with children with special needs. Just like our cat knows Murray is special and the horses he rides instinctively know and understand Murray and his needs—I understand Murray, and we work well together. I was trained by Irish Guide Dogs for the Blind, who train dogs for the blind and visually impaired and for children with autism.

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire disney paris

I was puppy walked by a volunteer puppy walking family for the first ten months of my life and then I went back to the Guide Dog Training Centre where I had my intensive training to qualify as an Assistance Dog. I was thoroughly trained and working by the age of 18 months and was the first Golden doodle Assistance Dog in Ireland. My three brothers Clint, Chad, and Cash all went on to become Guide Dogs.

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire parade

What does an assistance dog pack in his suitcase?

My coat needs a lot of maintenance, so I always travel with a selection of brushes and combs to keep my coat in tip top condition. I also pack my favorite blanket that I sleep on when we go to new places.

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire friends

What transportation methods have you experienced, and which one is your favorite?

Planes, trains, and automobiles–I’ve been in them all. I’m in the car every day and love travelling with Murray. I lie beside him, usually on the back seat of the car, with my head on his lap so he can pet me. I’ve travelled to Belgium, France and Spain on planes and, as a service dog, I am allowed to sit at Murray’s feet on the aircraft. Every time we have travelled the airlines have been especially useful and have allocated an extra seat to us— so I have plenty of room. Planes are my favorite because it usually means a fascinating holiday!

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire ball park

How do you pass airport checkpoints?

On check-in at Dublin Airport, I just produce my pet passport, plus a letter from Murray’s doctor confirming that he is on the autistic spectrum and needs to have me travelling with him. I never have any difficulty flying out of Dublin airport or returning home to Ireland. Sometimes we have to answer a few extra questions, but usually, we get only help and assistance. At the security gate, I walk through ahead of Murray and the security officer often opens the pockets on my working jacket just to check what I carry inside (poop bags only!)

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire fountain

On arrival back in Dublin airport I have to check in with the vet at the Department of Agriculture office in the baggage reclaim section; the vet checks my pet passport, gives my micro-chip a quick read, and makes sure I had been tick and flea-treated within the previous 48 hours before I flew home.

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire mountains


Do you get any perks in hotels or restaurants?  

Usually not, I am a working dog and just expect to be allowed in to accompany Murray. I am not allowed to eat or drink in a restaurant—I have had my meals beforehand—and I always decline the offer of food or water from the waiting staff. Some will insist I need something to eat, but Murray’s mom always explains ‘not while working!’. Some restaurants can be a little hesitant about having a dog (even a service dog), and Murray’s mom has an ID card from Irish Guide Dogs, which she shows the staff, explaining that I am fully entitled to be there with Murray.

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire view

When we travel abroad Murray’s Mom has made up an ID card in Spanish, French, and Flemish to show in the relevant countries. France is extremely welcoming towards services dogs, Belgium also, however, Spain is another matter altogether. This year, we persisted, though, and even got a Spanish hotel to accept me and allow me in the dining room every evening. This was a huge step for the hotel and staff, but I was so well-behaved that by the end of the week, they were totally converted to the idea of ‘working’ dogs staying in their hotels. We also appreciated the fact that they upgraded us to a larger suite when we arrived. We have also stayed in a lot of hotels around Ireland and our access laws in this country are regarded as some of the best in Europe.

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire seaside

Assistance Dogs for Autism have only been in Ireland for the past six years, and we were the first European country to Assistance Dogs. One of the things we always appreciate is how friendly, and welcoming hotel/restaurant staff are to me.Indeed, several times we have been upgraded to a larger room or suite (during check-in when they see how big I am!); we don’t expect or need it but it is very nice to get upgraded!

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire dublin

I have not travelled to the US before, so our holiday this July to South Carolina and New York will be a very exciting experience for us. Murray stayed in the Fairmont Copley Plaza in Boston last summer (because of Catie—their canine ambassador) as the family were worried about him missing me so much. This summer, however, we will all be together on holidays in Hilton Head—both Murray and I are very excited!

Q&A with Clive -Ireland's Autism Service Dog Extraordinaire castle

 

*Special thanks to Fiona, who acted as the perfect translator from Canine to English.

 


Jamie Grover of Autism on the Seas

Q&A with Jamie Grover of Autism on the Seas

 

Jamie Grover of Autism on the SeasHow did you start working with families with autism?.

I worked for UCLA and injured my back, requiring two back surgeries. My friend who happened to be the director of the university center for developmental disabilities asked me if I would work with him. I did, and I soon realized I had found my true calling.Needless to say, I’ve never looked back.


Can you describe a day onboard?.

Our kids are included with the assistance of my staff and Royal Caribbean’s Adventure Ocean (kids club) staff together with the typical children exclusive to our group on every cruise.Also, we have special events that are unique to our group of guests. Families can participate in any or all our private activities that vary depending on what ship we are cruising on. These activities include Galley Tours, Bridge Tour, Rock Wall, Ice Skating, Meet & Greet in the Ships Disco, playing bingo, doing crafts, and Pool Parties to name a few.


Describe your most gratifying experience on board so far.

This is an easy question to answer!
On almost every cruise, I hear the amazement in the parent’s voices when they see their son or daughter do something remarkable that they would never have guessed they would have ever witnessed.
Seeing their child ice skating for the first time, climbing the rock wall, involved in an activity with typical children in the Adventure Ocean group, participate in the Pirate Parade with the group, all things parent’s love to see! Totally priceless!

Will Autism on the Seas be expanding to other cruise lines, land vacations or shore excursions shortly?.

That’s the plan.

Autism on the Seas is currently organizing our first European Cruise in spring 2012. We also welcome hearing from our fans, friends, and families of cruise destinations they are most interested in. We have and are willing to customize any group cruise wherever there is a need and a group of folks requiring our assistance.
Jamie Grover of Autism on the Seas

I only host one shore excursion on our cruises, and that takes place our first day in port in Bermuda. I love Bermuda and know a fantastic place on the island that Is picture perfect for everyone, young or seasoned, in our group. Most families in other ports of calls buddy up and do excursions in small groups, and that’s  always fantastic to see.

Any advice you want to share with our traveling families with autism?.

Yes… The most valuable advice that I can offer is for parents to let go a little so both kids and parents can enjoy themselves on vacation.
We all want our children to be as independent as possible; most parents need to step back a little and give their kids some freedom to do just that!
As parents to special needs children we often let our FEAR take precedence our allowing our children the opportunity to flourish. Our kids do amazing things when given a little freedom and independence, especially under the watchful eyes of my staff and me on every cruise.

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