Q&A with Dr Stephen Mark Shore- Autism Advocate


Dr. Stephen Mark Shore was a typically developing child until around 18 months old, when he was, in his words,“ hit with the autism bomb”.
He became nonverbal, but due to the early intervention by his parents, his speech ability began to return at the age of four.
Refuting the doctors recommendations for institutionalization, his parents continued their intervention to help their son in his schooling and life.
Nowadays, Stephen is an internationally renowned author, an Autism and Asperger Syndrome advocate, and a professor of Special Education at Adelphi University.
I recently had the honor of interviewing Dr. Shore about his travel experiences.

 

Q&A with Dr Stephen Mark Shore- Autism Advocate and Author japan

How do you prepare for a trip to a place you have never been before?

I get my trip arrangements made well in advance, and I try, as much as possible, to plan ahead to avoid extra layers of hassle that might arise.Since most of my travels are business related (conferences and speaking engagements), I will ask the organizers for someone to pick me at the airport and drive me to the hotel, so I don’t get lost. Sometimes you need to advocate for yourself and ask for that extra help.

For example, when I went to Paris to speak at a conference, the organizers suggested I take the subway. I knew it would was noisy and a sensory overload. Additionally, since I did not know French, there was a high probability of getting lost.Therefore, I requested my hosts to provide transportation (or, at least, send someone to go with me on the subway if need to be).

Staying within my comfort zone is important to me, so I try to prepare for transitions by researching visual aids, like videos, on the Internet. I found that especially important for countries where the food and atmosphere are so odoriferous and different like Thailand or India.

Most of all, I know my limitations, and if I do need help I will ask for it!

What are your preferred methods of transportation?

I’ve tried many different types of transportation depending on where I’m going. Trains are excellent as they provide more space and legroom. They don’t require any seat belts, and there is no restriction on when you can get up and stretch, which is always a major plus for me.

I do drive occasionally, but never internationally. Unfortunately, renting a car while you travel comes with two additional layers of uncertainty –when you rent the car as well as when you return it.There is also added unpredictability with road conditions where the car can break down, and that you can get still lost even with a GPS system.
I also have to say I do like cruises as an option since, in addition to providing comfortable transportation, there are additional fun activities to help occupy your time while you travel.

Q&A with Dr Stephen Mark Shore- Autism Advocate and Author parrots

 What is your packing philosophy – over pack or under pack?

I would call myself an under packer.  I like traveling light with only carry-on. I don’t want to deal with lost luggage or have to wait extra time around the conveyor belt especially after long haul flights. I agree to travel with carry-on luggage does have its limitations, so I have my “bag of tricks” for how to bring on stuff I need and somewhat bypass weight limitations.

My two favorite tricks are putting items I need for my flight (like a jacket, book, drink, and snack) in a separate plastic bag and wearing a Scottevest that has multiple pockets to carry electronics and extra stuff. Sometimes I take an extra backpack that I can later pack in my carry-on. I’ve also learned to leave certain things like heavy shoes at home and take lighter substitutes like sandals most of the time.

What is the one electronic device you refuse to travel without?

I travel with multiple electronics, all of which I use. Nowadays I use an iPhone since it can multitask, and a laptop for my work.

The one place on a plane you won’t sit in?

I avoid the very back next to the toilets, where it smells and passengers either leans on your seat or bump into you while waiting their turn.

What is your favorite pastime on the plane?

I don’t have a favorite pastime per se. I do the usual mix of reading working and watching movies.

Q&A with Dr Stephen Mark Shore- Autism Advocate and Author australia

 

Which hotel amenities do you look for when making your lodging arrangement?

There are distinct features I always look for. A non-smoking room is important, as, outside the U.S., many properties still permit rooms smoking. Abroad, that sometimes means they just aired the room after the previous occupant smoked in there. Noise can also be an issue – anything from elevators, a wall unit A/C or even a refrigerator can bother may be people with autism, so noise proof walls are a plus.As a frequent traveler, I also appreciate properties that offer chemical free rooms, decent water pressure, and soft bedding.

If money was no object, what would be your top criteria for selecting a hotel at a destination?

It would depend on if I were looking for a boutique or chain hotel. I would get one close to the attractions or landmarks. Another feature I look for is for hotels to be close to outside food venues, so you don’t depend on pricey hotel restaurants or cabs to go anywhere.

Many hotel chains are now trying to cater to travelers with autism. What would be your tips to make their properties more “autism friendly”?

One of the most overlooked things is the cleaning process, which usually involves powerful chemicals. An autistic room should be cleaned with chemical-free products to minimize allergies, and have soft bedding, noise proof walls, and is away from the elevators.Many travelers with autism now use iPads and other electronic devices, so several outlets in the room are useful.

How has traveling made a difference in your life?

 It made me more aware of cultural differences. I try to promote autism awareness and get in contact with different autism organizations worldwide wherever I go.
One of the things I like to do, especially on Friday night is look up the local Habad House in the various countries and attend their Friday night services. That gives me a sense of familiarity and belonging to the community.

Q&A with Dr Stephen Mark Shore- Autism Advocate and Author chabad

 Why would you recommend traveling with a child on the autism spectrum in spite the challenges?

 I think it is important for kids with autism to be exposed to as many different situations as possible, so travel is an important tool Parents can use to educate their children. However, I would like to advise them to plan their trips in detail and allow adequate transition periods between activities to avoid sensory overloads and possible meltdowns.

 

 

 

Q&A with Donna Ciccia Parent and Nutritionist

 

 

What made you chose a skiing vacation for your family?

We wanted to have a family “White Christmas” experience.
Coming from Australia, we only get hot summer Christmas’. My mother wished to experience a traditional White Christmas, and we decided to include skiing with this experience.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist forest


How did you prepare your son for the trip?


We didn’t do all that much for preparation. We pointed out what snow looked like, described to him that it would be cold and showed him movies of skiing and showed him pictures of places we would be visiting. He was looking forward to going to the Intrepid & F.A.O Schwartz in New York after skiing.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist stairs


Did you buy your son anything in particular for the trip?

We purchased a lot of warm clothes & ski goggles & tried everything on to get the feel of it.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist sled


How did your son react to climate change?

He was not used to the cold but adapted very well.
The school helper ‘Nanna Barbara‘ knitted all the kids beanies (hat) as a Christmas present and it worked well for us as he was excited to wear it.

 

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist ski


Did you ask for any food accommodations?

No, as he will try most things and has no allergies. We were traveling with a lot of kids, so we knew we would be eating to accommodate them all.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist ice cream


How did your son adapt to the clothing and equipment needed for skiing?

We were lucky that he adapted well with all of the changes in clothing & climate. He was excited to get his ski’s & helmet etc.

Did any other family members/friends join you and help out?

We had all my family with us. My parents,  brothers,  sister and their families. So all sixteen of us traveled together.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist dinner


How do you find any time for yourself during vacation?

We had this as a family vacation although we did split up into groups on numerous occasions. We all traveled from Sydney to Beijing (transfer only) and then onto Vancouver. We spent a week in Vancouver and then all traveled together in a privately hired bus to Kelowna & Big White Ski Resort for ten days. Some family members returned to Australia; others went to Seattle, and some stayed at Big White for another month. We then traveled with my parents to New York and met up with some other family members there. We spent another six days in New York and two nights in Beijing on the way home.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist christmas


How did your son enjoy the experience?

He loved every minute of it!

What do you think he got out of the experience?

Every time we travel he matures and is curious about different places and is always asking “Can we go there next?”

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist nyc


Would you consider doing this again and why?

This vacation was a once in a lifetime trip- we traveled for one month which was fabulous but may be a hard thing to pull off again anytime soon.

Best moment on the trip?

Too many to just name one.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist china


Worst moment on the trip?

Hurting my knee skiing so I could ski with the rest of the family.

 

If you had the chance for a do-over; what would it be?

Stay longer on the East coast of the US so we could explore more places. Maybe that’s the next trip.

 Q&A with Donna Ciccia Autism Parent & Homeopathic Nutritionist beijing

 

Travel Memories of a Teen with Autism

Guest Post by Ryan Comins

One of my most memorable family vacations took place during the summer of 1997.  My dad had just graduated from college with a bachelor degree, so he treated my mom, my brother, and I with a two week trip out west.
We first drove out to my grandfather’s house in Illinois.
After that, we went on to Iowa, South Dakota, Wyoming, Montana, Idaho, Minnesota, and Wisconsin before taking a ferry to Lake Michigan and driving back home.
We saw many sites that I will never forget: the Badlands in South Dakota, Mount Rushmore, Old Faithful, and many more fond memories.

Travel Memories of a Teen with Autism VOLCANO
While driving along a highway in Wyoming, we hit a deer as it slammed into the side of our car, sending the right side mirror sailing into a corn field. Being on the autism spectrum with a fascination for animals, I was more preoccupied with whether the deer had been hurt than by the near miss we had just experienced.
Through some twist of fate, the people driving behind us stopped to see if we were alright. It turned out that they lived in the same town we did. Here we were in the middle of Wyoming talking with some people who lived across town from us in Michigan.

Travel Memories of a Teen with Autism MOUNTAINS
The sky turned black while we were in a hotel in Minnesota as a tornado came within five miles of our hotel.
That close call ramped up my anxiety.
Before taking shelter on the part of the hotel, I remember standing outside as my dad called up to a guy on a nearby tower, asking him if he could see a funnel. As far as I can recall, the guy could not.

Travel Memories of a Teen with Autism WATERFALL
Travel Accommodations? I didn’t get any

I never really received any accommodations for my autism spectrum disorder.

The issues that I faced were related to my anxiety, during the tornado for example and my preoccupation with animals, which was shown by my reaction when we hit the deer.

Also, I had a tendency to be in “my little world,” which was why my dad gave me a pep talk before getting out of the car for a picnic in the Big Horn Mountains in Wyoming.

He told me that if he said so, we were to go back to the car and leave behind the food. He was worried about a bear coming up to our picnic and didn’t want my brother or me to get hurt.
Thankfully, nothing happened, and we enjoyed our picnic without incident.

Travel Memories of a Teen with Autism HOUSE

My future plans include Travel!

Someday in the future, I would like to travel out West again by myself or with a close friend.
This time, I have a different objective in mind.
For the past eight years, I have been writing my fantasy series.  I would like to experience the environments I saw when I was younger to gain story inspiration.
I would like to watch the sun rise over the mountains and note the chill that may or may not be present in the air.  I would also like to witness the sights, sounds, smells, and the feel of the air, the presence of insects, and all sorts of things that would make my writing all the more detailed, colorful and vivid.  I plan to take this trip in the next five years or so.

Travel Memories of a Teen with Autism LAKE
Ryan is a writer, podcast host, and autism advocate.  He was diagnosed with autism at age 12 and now at 25, he.is doing well and committed to using his writing skills to help others to understand autism better.

 

 

Q&A with Karen Bower of ‘Railman’ Blog

Our guest this month is Karen Bower from the UK.
Karen is an industrial chemist by background, married and busy stay at home mom to Harry and Imogen and steps mom to Hannah and Issy.

When did you start traveling with your kids?

We began quite early; Harry was two, and a half and Imogen was barely eight months.

What was your first trip?

Our first adventure was to EuroDisney.
In hindsight, I already knew that Harry was not neurotypical.
Even though I couldn’t articulate it at the time, travelling with Harry and Imogen was such an enjoyable experience.
There were no meltdowns. No tantrums. No screaming fits because we’d done something terrible like turned right instead of left!
However, the first time where I understood that I could use trains to connect with Harry and facilitate his learning was during our Lands End to John O’Groats  trip in 2012.

Q&A with Karen Bower of 'Railman' Blog chair

What is your favourite type of trip?

For us, sleeper trains work brilliantly.
The children sleep very well on trains, and Harry adores both waking up in a train station and also being somewhere new. For Harry, the thrill is traveling, and I like the fact that sleeper trains provide time to explore our destination.
I tend to do quite a bit of research on our destinations and will have a planned activity – to see a zoo or a park or a museum and, again, that seems to work for us. I try to make sure that we do something relevant to the city we are in and also something the children haven’t done before. While in America, we will take a tour of the White House, see whales and even take a tour of a submarine.

Q&A with Karen Bower of 'Railman' Blog SIGN

Do your kids enjoy trying new dishes?

Um, no!!
Food is a massive issue.
Harry will only eat a very limited number of foods. His first line of taste buds, I am sure, are in his fingers. Food is rejected for a vast number of issues. Too hot, too cold, too hard, too soft or simply (his favourite excuse!) too yucky.
I bring pre-packed pureed fruit with me. Buying it en route is not acceptable to Harry, it must the brand he likes otherwise he won’t touch it.
Other than that, Harry can survive solely on bread, pasta, pizza and diet coke!!

Q&A with Karen Bower of 'Railman' Blog HARRY

What made you plan your long train trip?

This trip comes at a special moment for our family.
It is the last summer where all the kids are at home. Or, more accurately, on the road. And it is the first summer when we aren’t scared of autism.
Plus there is the flight issue. The one part of the trip which will be stressful will be the flight so it made sense that, once we were out there, we might as well stay for the summer!

Who is going on that trip?

I will be taking Hannah (18), Issy (15), Harry (5) and Imogen (4)  to NYC, Washington and Denver.
My husband Richard will join us in San Francisco. Then, Richard will take the elder girls to Las Vegas while I will be head to Canada with the little ones.

Q&A with Karen Bower of 'Railman' Blog SKI

Do you make your travel arrangements?

We have used Ted Blishak, who has recommended suitable layovers and hotels and made sure we have the right tickets and documentation, like a letter of authority for Issy, who is a minor and for whom I do not have parental responsibility.

Do you typically ask for special accommodations anywhere?

Only on the plane.
I have informed them of Harry’s disability so that we can get bulkhead seats (at least for myself and Harry.) This is because Harry WILL kick the seat in front of him and any attempt to stop him will increase his stress making it even more likely he will kick the seat in front of him!

Q&A with Karen Bower of 'Railman' Blog SAIL

How do you travel- light or with everything but the kitchen sink?

I’d like to answer light, but I have a feeling Hannah and Issy won’t agree.
One thing that I am clear on, though:  ‘If  YOU want to bring it, YOU have to carry it !’

What items do you pack to entertain your kids on the long train rides?

I-pads!
I understand that there is an enormous debate over whether children should be allowed to have I-pads, but honestly, I couldn’t rate them more highly.
If there is one benefit of having a child with autism, it’s that debates like this no longer apply to me. I do what is right for my family.

How are you preparing your kids for the trip?

We talk a lot about the places we will be visiting and what we will be doing in each city.
I try to make it relevant to the movies they watch.
So, when we visit  New York, we won’t be touring Central Park Zoo but the Madagascar zoo!!

Q&A with Karen Bower of 'Railman' Blog TRAIN

Have you sorted out the travel logistics yet-laundry, food, places to see?

We have a reasonable plan.
We will buy clothes as souvenirs on the way.
When Richard flies out, he will bring extra food for Harry and take home any souvenirs we’ve accumulated but don’t want to take with us.

Will anyone else be joining to help you on the way?

Because the elder girls are flying home from Las Vegas, my sister is flying out to accompany us on the return flight.
During the trip, I need someone to care for Imogen as Harry will need my absolute attention.

Q&A with Karen Bower of 'Railman' Blog BOAT

 What souvenirs will you be bringing home?


I’m planning to collect cloth patches and t-shirts from the various places we travel and then make them up into a throw which we can keep.
We will also take millions of photos, and I’ll make them up into a photo book when we get back.

Where do you see yourself travelling with your kids five years from now?

I don’t think I’ll ever put a timescale on it.
Much to my mother’s dismay, she never knows where we are going to go next!!
We will travel while it works for our family.I like to capitalise on Harry’s interests.And I find that the more we explore, the more things we find we want to do.
I’ve learned not to make assumptions when it comes to Harry.
I have started to plan a couple of adventures for later this year.
This Christmas, I’m planning to take the kids to Rovaniemi by train. We will take the sleeper from Helsinki. Personally, I think this is a much nicer way to meet Santa Claus – our very own real life Polar Express.
The only thing I know for sure is that we do what’s right for Harry and us as a family. Where ever and whatever that happens to be.

Q&A with Karen Bower of 'Railman' Blog BOY

 

 

Q&A with Jesse Saperstein Autism Advocate

Jesse Saperstein is an author, speaker, and autism advocate.Autism is something that is near and dear to his heart because he has been diagnosed with Asperger’s syndrome, a form of autism.
He is also a leader in the antibullying movement, and in 2012, completed his first skydiving jump that he called “Free-Falling to end Bullying”.
I talked to Jesse to get his perspective on both bullying and autism travel.

Inspiring the younger generation of Autism :Q&A with Jesse Saperstein

photo credit jesse saperstein

What attracted you to skydiving to make a statement against bullying?

It is close to my home so people that know me will show up to express their support.It is also receives more publicity since people know me and like my work.

What brought you to skydiving?

 It’s to keep in good shape.
I also do power walking that helps me maintain my weight and be healthy. Adventure sports attract more attention from media, so I thought that would be a great platform for me to try and further challenge myself.

When people suffer from a visible disability, people are more merciful and take a different perspective to those who have invisible ones. Being ignored as a person with hidden disabilities is a subtle form of bullying.
People with invisible disabilities are perceived as being weird, and I’m out to prove to the world that we just want to be accepted and that it society should meet people like us halfway since there is so much more to us than just our label.

How did travel impact your life?

Travel made me less reluctant to try new thing.
As an autistic; you always want to stay in familiar territory as it is your comfort zone, but you should and need to prove that you are capable of accomplishing certain things. You need to have the foresight and always focus on the bigger picture, so I learned to get delayed rather than instant gratification when I set to do something.

Unfortunately, in today’s travel world reality you don’t necessarily get what you want at the speed you want it.Many times you need to wait for flights, or your turn in places like theme parks or restaurants.

However, you can turn that flaw into a strength if you work on it and use it to accomplish objectives. Now I’m better and more patient as I understand that it will help me get from point A to B.

I also learned that putting yourself in new positions teaches you a lot about life even when your outcome isn’t positive, so I fear the unknown less and try to remind myself that life is a learning curve especially when you are away from home.

What’s your favorite type of vacation?

I love slow paced vacations where I don’t feel under pressure to rush through anything.
I don’t take many vacations, especially now as an adult. I do get to travel places to promote my book, but I don’t regard that as an actual holiday,

I enjoy taking cruises since continuous eating and lazing on the beach combo is fun for me.
My last vacation was with my family in 2009 to Del Rey Beach, but we had to attend a funeral. When I go on more vacations, I will definitely seek more adventure-based ones.

I advise parents and adult with autism to have a plan A and B when planning travel. What’s your take on that?

I always look at the bigger picture instead of the details, so if a plan doesn’t work, I’m not that phased.
I try to think of some motivation instead of dwelling on what went wrong.
For example, when I travel on my book tour and I get a lousy seat on the airplane, or I dislike the hotel I’m staying in, I remind myself that my publisher is paying for it and that I get to meet more of my readers and promote my book.

As an Aspergerian, I do understand the dire consequences of meltdowns on flights for instance, so I try to occupy myself and not bother anyone.

Did I mention ,I’ve had an incident when I missed my flight and security had to accost me off the gate as I was not acting appropriately.Now THAT taught me a lot.

 

Q&A with Savannah L. Breakstone,autism advocate

 

Do you remember your first trip on your own; where did you go? 

I don’t remember my first trip on my “own”, but I do remember my first flight alone. Or rather, I remember being on the first flight on my own.  I think it was to visit my biological father, but I”m not sure. It was, though, within the last 4-5 years.

Is your travel business or pleasure related?

I usually go to do advocacy work or for training or conference. Most of my in-state travels right now are with a group called Self-Advocates United as 1 (SAU1), which is a PA based disability group that focuses on Developmental Disabilities. I go to Harrisburg, do training for other self-advocates across the state (including in the state centers), and attend meetings or training.

Every couple of months I go to Washington D.C. for related advocacy purposes, and I stay with friends.

Travel Challenges of Adults with Autism Q &A with Savannah Logsdon-Breakston CHICAGO

I also get invited to conferences and training across the country from time to time.
Because of my financial situation, I don’t have the money to travel to things that aren’t paid for by someone else or by fundraising.

I’ve gotten to go to Chicago, Denver, Seattle, Kansas City, and Oregon in the past couple of years. This week.I’m  leaving tonight for Dallas, TX, followed by Amherst, MA.

On the Seattle trip, I stayed extra time because of being able to stay with some friends after the summit was over. Because I normally don’t have much time that isn’t used by whatever brings me to a place, it is nice when I go someplace where I can spend a few extra days if there is someone I trust in the area.

 How do you prepare for your trip?

I used to be more detailed with my packing regimen. I had a structured order. Today, though, I’ve traveled enough, so I have a looser order.

I have a list of what I will need, and at this point, I have a version of those things that are ‘stored ‘ in my bags.
Some events might also offer packing lists. If you aren’t sure what to bring, and there is an event organizer, ask what the weather is like, and if there are any needs, you might not anticipate.
Since most of my travel arrangements are made by third parties, I  don’t need to manage my travel budget right now.

When another person is setting things up, they will need to know the logistics of the events are and coordinate your flight schedule accordingly.
They’ll deal with the details of using your correct name as it appears on your approved photo ID, your date of birth or any additional needs you might have.

You should let people know in advance if you require further accommodations  Depending on your method of travel; there are different types of things that they can do to help you have a more accessible trip.

Travel Challenges of Adults with Autism Q &A with Savannah Logsdon-Breakstone PROFILE

Photo credit S. Logsdon-Breakstone

You should also keep your needs in mind to determine what type of transportation you should use.

In the past, I  used to be able to travel any which way, but I now diagnosed with fibromyalgia which makes taking certain types of transportation very painful, especially if I can’t move around or have space to stretch.
Also, I also suffer from car sickness, which means buses aren’t an option for me.

When I can, I get a low scent or “allergy friendly” hotel room, but that is not always an option in budget friendly hotels.
Though this isn’t a big deal for me, I do know that for some people this can make the difference between a meaningful participation in the day’s schedule or sitting in your room for most of the trip.
I  wish more people would avoid heavily scented products when they are travelling, especially on public transportation like planes and trains.
Sensory over-stimulation or extreme allergies, people usually have a good reason to request a ‘scent-free’ environment.

 

When I travel, I like to look up the layouts of the airport, hotels, and other venues so that I avoid unexpected difficulties.
I also work with event organizers or people sponsoring me to make sure I understand where my ground transportation is and how that process works.

Don’t be afraid to ask the people who work for the airlines or trains for help if you need it. I learnt for example that those wearing red caps at Amtrak are there to assist passengers who need assistance.You may or may not have to disclose that you have a disability, but you shouldn’t need to specify beyond what is directly relevant. (Examples: “I have a condition that makes crowded areas very disorienting, so I need help” or “I have a condition that makes long-term movement difficult. What sort of help is available?”

Check and make sure a station or shuttle is accessible for you before booking through there. Even though Amtrak is supposed to be wheelchair accessible, many stations still aren’t updated, especially in rural areas.
Also, if you or someone you are travelling with uses a wheelchair, don’t assume that because something meets ADA standards, it will be accessible- ask or have someone help you ask specific questions.

It can suck to get someplace only to find that your room isn’t convenient for you!

 

Travel Challenges of Adults with Autism Q &A with Savannah Logsdon-Breakstone train


How stressful are airports and security checks for you?

TSA is… Well, I dislike the crowded and the loud part.
But the biggest issue with TSA for me tends to be when I travel through a TSA  checkpoint I haven’t been to before.

I’m OK with the airport I usually fly out of. I haven’t been through Dallas’s yet, so that makes me nervous.
The bigger the airport, the more complicated it seems.
Make sure you follow the packing guidelines that are posted on the TSA website, have a contact person in mind if there are complications, and try to keep calm.

I haven’t been pulled out for more than a pat down when they couldn’t figure out what was causing the metal detector to sound  because I had long skirts or was covering my hair for religious reasons at the time.
They end up having someone wand you, and have you move your loose clothing around so they can tell if you are smuggling contraband.
When I covered my hair, they would pat down my hair and scarf or peak under it. Some places are more respectful than others.

If you DO have a negative TSA experience, write down all the details as soon as possible. There is a place on the national TSA website to turn to report any harassment mismanagement or discriminatory treatment at a particular location.

If they don’t get significant reports, they don’t know that there is a problem.
Some populations will have additional issues, statistically, with TSA than others.
It is a good idea to look up tips from others with similar demographics to get a sense of what to expect, and what/if there’s something you want to do to make it easier.

Travel Challenges of Adults with Autism Q &A with Savannah Logsdon-Breakstoe profile2

Photo credit S.Logsdon-Breakston

What attractions, events or venues do you like to explore?

I usually travel for advocacy events, so I end up spending a lot of time at the conference or other activities that I came for, and rarely have time to do additional travel.
When I do have extra time, it depends on. if the trip falls on a Saturday, I might check whether there is a synagogue I can visit.

I always try to find foods that I might not have access to, back home that are still within my dietary needs and restrictions. Comic book stores are another place I look for when I have downtime.

 

I’ll also look up if there is a Foursquare badge for a city and what I’ll need to visit to get it. I use Foursquare to keep track of when and where I’ve been, as my sense of time isn’t very good.
For someone like me, it also helps me avoid staying in a room by myself.
Even when there isn’t a badge, Foursquare can offer you suggestions for things you might like based on your user history.
When I traveled to New Orleans, I even went to a Jazz bar, though it was deafening.

I enjoyed getting a chance to see such many interesting things and beautiful buildings. When I’m overstimulated, though, my auditory processing is not as good and speaking is harder. I had my netbook with me, and I shared a hotel room with a friend and fellow advocate. She is Deaf, so our access needs kind of met up fairly well for that trip!

If you had the ability where would you travel to?

I  do have a list of states I haven’t had the opportunity to visit yet.
High on the list are California- and Florida which might happen this summer if I can raise the funds for me to attend the Society for Disability Studies conference this summer!
If I had money for fun travel, I’d also like to attend Vidcon in CA, but I don’t see that happening.

Obviously, Hawaii is also on my bucket list, but it’s a lot less likely to get a trip there than somewhere in the continental US.

I’d like to visit Israel someday, of course, as well as spend some time in England. One of my grandfathers was born in England and came to the US when he was just a boy. I have family there as well as in Spain.
My family is vital to me.
I also like history and architecture so touring places like Japan would appeal to me. Hopefully someday since at this point, money makes international travel unlikely.

Travel Challenges of Adults with Autism Q &A with Savannah Logsdon-Breakstone NOLA

 

Savannah Logsdon-Breakstone is an adult with multiple disabilities, including anxiety disorders, fibromyalgia, and hypermobility and autism.Savannah lives in rural northwestern Pennsylvania; manages social media for national disability non-profits, consults on policy at the state and national levels, and works as an advocate for both autism and cross-disability groups.
She is actively involved with ASAN, SAU1, and other organizations focusing on disability issues. She writes for multiple blogs, including Persephone Magazine, as well as her advocacy blog, Cracked Mirror in Shalott. Savannah has had essays and poetry published in anthologies such as Loud Hands and Perspectives 2.

Q&A with Michelle Conover, Neuropsychologist

 

 How does exposure to new places and experiences contribute to active learning?

With exposure to new experiences or people comes an opportunity for problem solving or communication.
When you are familiar with the person or the place, you have already learned how to navigate the issue, so there is not as much opportunity for further learning. However, when engaging in a new activity, your brain is more “lit up,” as it’s taking in as much information as possible to understand and assimilate into functioning.

What travel activities would you recommend for a person with autism?

  • On any trip, hitting the highlights of any place or country is a good start.
  • Places of interest, like museums, have the value of learning that’s concrete.
  • Observing your new environment is also important. Taking things in by sitting and relaxing is just as important as running around and fitting as many new activities as possible.
  • Trying new things, such as foods, within and outside your interests is also important. Sign up for a tour to gain additional information.
  • Visit other places you would not necessarily visit. For example, if you’re interested in politics, you can seek out the places that match up with your interests such as City Hall. However, make it a point to explore areas outside your interests to get a broader view such as visiting an old bakery or the fashion district. Anything that the brain is unfamiliar with allows for more connections to be established.
  • Participate in events that the local culture values. Connect with local people and see what they’re interested in. Festivals and other social activities are a great way to experience a new culture.

    How can parents keep the learning going after a trip is over?

  • Ask the child about their highlights/points of interest.
    It’s a good idea to ask at the end of the day and also to review once you get back home.
    A good activity to do is to pick the best photos of the trip and make a collage or scrapbook for a keepsake.
  • Once at home, parents can keep doing similar activities with their child.
    For example, if the trip forced you to try new foods, you can continue that at home and try different restaurants or items to eat. Cooking together also can facilitate this learning.
  • If the trip were to a foreign country, parents and children could continue to use the foreign language at home.
    For example, substituting basic words or phrases makes interaction less mechanical and more fun (“Ciao” for goodbye).Also, taking turns and writing out fun questions or phrases in a different language on the chalkboard or paper and having the family members guess the response makes mealtime more fun and interactive.

 

Traveling with autism sensory enhancing experience or overload?

There are pros and cons to exposure to too much information.
On one hand, sensory overload can cause meltdowns, anxiety, or panic, where the brain is processing too much information and has no way to regulate and thus the negative emotional output of anxiety.
On the other hand, for those who are under-stimulated, that could be a good source of awakening some of the senses. Parents should monitor how the child reacts to a new environment because if it causes a negative response, it can put

Parents should observe how the child responds to a new situation because if it causes a negative response, it can put a damper on the whole trip. Parents should prepare ahead by planning to become involved in new experiences but also plan to take some time to rest and relax in a quiet setting. For the person who doesn’t have enough stimulation, touch upon all senses (sight, sounds, smells, touch, and taste) as often as possible.

Some parents are quite reluctant to take their kids anywhere because of meltdowns-any tips you can share to help them travel more?

Meltdowns occur from different sources, whether it’s due to too much or too little information.
Even boredom can cause anxiety or irritability. You may find your child has poor frustration tolerance because they have to wait in a line or follow a particular protocol they did not expect.

  • Have the plan to implement in the event of a meltdown. For example, review with your child before the trip what is going to happen if a meltdown occurs. This is helpful in that it sets up rules for child and parent.
  • What can help is to give the child a small toy so that they can bring that out if they are feeling frustrated, angry, upset, etc. This little element can inform the parent that a meltdown is on its way without the pressure of finding the words for the feelings.
  • Know the triggers for a meltdown. Such as being cooped up for too long can cause meltdowns. Too much time with the little brother or sister can be distressing. Also, when parents become upset or anxious, the child will take on your anxiety and project it for you. Tip; never argue in front of the kids, save it for when you get to the hotel.
  • Don’t force situations, meaning if you have your itinerary, don’t be so rigid that it can’t change to accommodate. You may end up not seeing a museum you want to go to, but instead sitting by a lake watching the ducks.
  • Establishing a new basic routine prevents meltdowns. The expectation of what is going to happen always puts people at ease. It’s the unknown that we all struggle with.

    What can parents do when their kids on the spectrum misbehave on vacation?

    If your child acted out or behaved poorly, I think it’s important to speak to your child about how “disappointed” you are and that you know they can do better.
    Have expectations for your child and that he/she can do better job next time. Give them opportunities to correct a wrong and accept an apology; don’t hold a grudge.

    You can also take away their toy for the evening to reinforce a loss when they do something they know they shouldn’t be doing. Children with poor memory or attention should be asked to repeat the rules out loud so that they know what is expected of them.

 Successful trips start with careful planning how can parents get their kids to participate?

  • As you create your itinerary, get feedback from your child. Include activities they’re interested in. Even if your child cannot verbalize, but you know they’re interested in dinosaurs or the ocean, you can include relevant activities.
  • You may offer them the chance to make decisions between two museums or give them the opportunity to make a choice regarding what restaurant to eat at.
  • Give them the map and ask them to navigate. Trips to Disneyland or other amusement parks, for example, are a good start since the map is color-coded for easy tracking.

In today’s travel world stress might become an overwhelming factor for some kids- any thoughts on how to help children on the spectrum be less stressed?

  • Pack some of their favorite items such as toys or blanket.
  • If they play video games (coloring books, puzzles, etc.) at home, and they want to bring a pocket video game with them allow them to do that. It can make a long plane ride much more manageable, and also, it can be a real reward for a long day of sightseeing without incident.
  • For some kids, especially with spectrum disorders, a central routine is necessary. Establish a basic routine during travel. For example: get up, have breakfast, talk about plans for the day. This minimizes any anxiety of the unknown.
  • Review issues of safety such as what is the plan if someone gets separated from the group. Also, having a watch on is helpful so that everyone is mindful of the time.
  • Try to include physical activity, if possible. Physical activities help with stress. Consider walking to your destination if it’s a short distance and physically feasible, as this helps with anxiety.

What would you say to parents whose trip turns out a total disaster?

There’s always a positive and negative view of any situation. It’s important to see the good or you will dread family vacations. Also, problem-solve issues as they arise. While you may try to anticipate and plan for everything that can go wrong, you may not be able to do so. Let things go. Attempt to remember that you’re there to have fun. Being open and flexible will allow you to enjoy the short time you have off as a family.

 

 

 

Q&A with Michelle Conover, Ph.D.Neuropsychologist
Dr. Michelle Conover is a licensed psychologist and Q.M.E., trained at Pacifica, Fielding and UCLA.
She specializes in clinical and forensic neuropsychology with special training and experience with traumatic head injury and neurodegenerative diseases.  Dr. Conover has treated individuals with TBI, PTSD, Autism, Asperger’s, ADD/ADHD, learning difficulties, stroke, personality disorder, addiction and other complicating diseases such as Alzheimer’s. As the clinical director and owner of Southern California Neuropsychology Group in Woodland Hills, CA, she provides neuropsychological assessment, cognitive rehabilitation, and neuro-psychotherapy.

 

 

 

Q&A with Erika Villanueva from Viajes To Go Vacations

You recently organized a cruise for moms who have kids with special needs: what made you think of the idea?

Well, I had initially held a fundraising cruise for the Down Syndrome Research and Treatment Foundation in 2009.
That’s where I met Gail Williamson, who at the time was working with the Down Syndrome Association of Los Angeles.

A couple of years later she contacted me about an idea that they had to put together a cruise just for moms, and they needed some help with the logistics. I thought that this was a fantastic idea and did not hesitate to jump onboard (so-to-speak).
It is the ONLY group cruise that I arrange that I travel with and participate in.

Since you are a travel agent, did you prepare any special features or pampering for your participants on board?

Yes. Definitely. I arranged to have our group dine together so that we could socialize and get to know one another.

Also, we had a meet and greet presentation the first night where the director from the D.S.A.L.A, who gave a brief summary of what will be going on, and we had contests and gave away gifts.

One year we had a slide presentation with pictures of all of the moms and their families and each was able to give a brief introduction–it was an ice breaker of sorts. I arranged to have a group photo shoot on the ship’s atrium stairs, and everyone received a complimentary 8 x 10 photo to take home as a reminder of their weekend. Lastly, the last day before departure I arranged a complimentary cocktail party for the ladies where we were able to have fun and say our goodbyes.

 

 Q&A with Erika Villanueva from Viajes To Go Vacations ladies

Photo credit Erika Villanueva

How many moms ended up coming?

Each year it keeps growing. This past January we had eighty-two ladies. Most of the moms are from Los Angeles and surrounding area, but we have had moms coming from Texas, Arizona, Oregon, New Jersey, Oklahoma, and even Canada.

What ship did you go on this year?

We sailed the Carnival Inspiration. I set it up so that moms could choose what type of cabin that fit their needs/budget best. So, we had moms that booked inside cabins, others that had oceanview (picture window) and some that splurged and got balcony suites. No matter what type of cabin we chose the service was excellent. That’s what we came for; to have someone pamper us for three days.

Did you get to enjoy activities as a group?

Yes. There were the “dancers”, the “singers”, the sports enthusiasts and even the ladies who loved the casino.
The women would come together, make plans and meet at the different activity and entertainment venues. These were women that had just met and were all hanging out together as if they had known each other forever.

Meal times were the best. Eating great food, sharing experiences and lots of laughs.

 Q&A with Erika Villanueva from Viajes To Go Vacations table

Photo credit Erika Villanueva

What did you all do in Ensenada?

Some ladies didn’t even get off the ship deciding to savor the peace and quiet of the spa or pool. Others took some excursions to see the famous Blow Hole, visit one of the wineries or do some shopping.

How did you feel about traveling without your family for a change?

It’s always a little nerve-racking to leave the family.
My husband is great about making me go and reassuring me that he can hold the fort down until I get back.
However, I always take out travel insurance because I’m paranoid.

In the end, I’m always glad that I made that time for myself.

How did other moms feel about coming on their own?

Wow!
I saved an email that one of the moms sent after the cruise was over and I just have to quote here part of what she said since it pretty much sums up most everyone’s thoughts
… “I walked on that ship by myself, and I didn’t know a single person besides Gail.  I had no real idea of what I was getting into and it was scary. I was just now looking at our group photo, and now I can put names to soo many of the faces.  I walked on that ship feeling quite alone… I walked off feeling like I spent the weekend with family…”

 Q&A with Erika Villanueva from Viajes To Go Vacations casino

Photo credit Erika Villanueva

Would you recommend taking a moms only cruise, and why?

Yes. Definitely.
I know from personal experience how draining juggling work and parenting with kids especially special needs can be.
I  needed to have a few days to recharge and to feel refreshed to take on the world again. Words cannot describe the feeling of being amongst other women that understand where you are coming from and that do not have a puzzled look on their faces when you are describing your child’s behaviors, health, diets and anything else that goes on with raising a child with special needs.
It’s priceless.
This last cruise I took my mother along, and it also was great for her to meet other grandmas and ladies her age with similar experiences. Many bonds were formed, and we look forward to seeing each other and catching up next January again.

Erika is married and mom to a very energetic, neuro-typical nine-year-old daughter, and a ten-year-old son with Down Syndrome and Autism.

She is a Certified Accessible Travel Advocate providing specialized vacations for those with mobility, visual, hearing, and sensory limitations. She believes Autism can be very challenging and can limit a family from doing many things that typical families can do. She continuously tries to find ways to overcome some of those challenges by planning short getaways and day trips for her family as well as help other special needs families plan their getaways through her travel agency and Down Syndrome activism.

 

 Q&A with Erika Villanueva from Viajes To Go Vacations home

Photo credit Erika Villanueva

 

 

Q&A with Wolfie Blue of ‘Rainbow Mamas Circus’

Wolfie Blue’s is a unique autism activist residing in the U.K. Over the years she has traveled extensively with her family and performed in many outdoor festivals as a circus performer. 

She is a mother of four young kids, two of whom are diagnosed with autism as well as an educator(she homeschools her children) and an avid blogger lending much-needed tips to less experienced moms on how to cope with autism on a daily basis.

 

How did you come up with the ‘ Rainbow Circus Mamas’ concept?

It is symbolic for me.
The ‘Rainbow’ represents the Autistic spectrum, ‘Mama‘ is me, and we are circus performers. I wanted to create a space for moms and children at festivals to relax slowdown from all the hectic life around us and even learn while playing.


How do you find the time to do community work while taking care of four kids?

I homeschool, so time for me is immaterial. I’m always busy, so it’s not a case of fitting everything in but rather doing everything in the right order!  I’ve just published my book ‘Diary of an Autism Mother’ explaining how I get everything done. Though it gets stressful at times, I wouldn’t change anything in my life.

Q&A with Wolfie Blue,founder of 'Rainbow Mamas Circus' mom

Are any other family members involved in The ‘Rainbow Mamas Circus’ project?

Our kids are involved, of course, and their dad is the other part of the circus. We work in close collaboration with another group called “the naughty pixies” that have built a Yurt and inspired us to make one too.


How often do you travel?

We only travel when we have a booking somewhere, usually at a festival. We typically go a few days before the event and then head back home after helping to clean up and pack everything down.

 

Q&A with Wolfie Blue,founder of 'Rainbow Mamas Circus' merry go round

How well do you pack a family of six on short notice?

I’m a master at packing. Filling the minibus with everything takes me about an hour. I have lots of packing lists, to do lists and army drill style packing knowledge.

 

Where do you stay when you travel?

We sleep in our minibus; although when the yurt is finished, we’ll be a lot more comfortable sleeping inside. Festivals are outdoor events, so there are usually gas stoves and campfires for cooking.

Q&A with Wolfie Blue,founder of 'Rainbow Mamas Circus' playtime

Keeping young special needs kids safe in large crowds must be a challenge- How do you manage?

Having autistic children is a massive responsibility!
I watch the kids all the time plus their dad is on hand to help. I also have them wear ID tags in the isolated case they should wander off.

Are you raising money for a particular cause?

We don’t raise money; it’s purely volunteer work. Sometimes we get reimbursed for the fuel costs if we travel far. I have done some fundraising for the National Autistic Society recently- I got calendars made to sell and got everyone involved.

Q&A with Wolfie Blue,founder of 'Rainbow Mamas Circus' son

How are the shows received in the community?

We get bookings at family friendly festivals where we are well received. People know that we’re there to entertain them, and most children find playing with circus toys irresistible

How do your kids enjoy the shows?

They are all naturally circus lovers, so it’s like a big sensory trip for them. My daughter loves art and helps out with the visuals.
My older nonverbal autistic son enjoys the loud music. As for fire shows -most kids I know are fascinated by twirling flames, mine included.

 

Q&A with Wolfie Blue,founder of 'Rainbow Mamas Circus' fire

If you had to choose a personal favorite; which festival would it be?

Hands down the best fire shows are at ‘Alchemy’ festival with more than 100 people who join in – an unusual sight!
But the best children’s atmosphere has to be the ‘beautiful days’ at the Levellers festival where all the kids run out of their tents down the hill to come and play with the circus toys, and everyone remembers everyone from previous years.

Do you see a change in people and their level of autism awareness after they meet your family?

Oh, yes. People remember us and after spending time with my autistic children, they learn how to respond in a much more positive way.
Since two of my boys are nonverbal many, people learn quite a bit about autistic behavior. Also, some of my art boards promote natural birth, breastfeeding, and autism acceptance, so other mothers learn new stuff too.

Q&A with Wolfie Blue,founder of 'Rainbow Mamas Circus' kids

Where do you see yourself five years from now?

I’m a planner! I sit and draw visual calendars with five-year projections. Aside from homeschooling my kids, writing my books and fundraising my ultimate dream is to expand the circus and get a bigger space for it.
I have people messaging me on Facebook asking for advice on their special needs kids, so I would love to set up an online support group to reach out to those who are just starting out and help them.

 

Q&A with Paul Cimins of Autism Radio

 

Many parents of children with autism approach me and ask me to share travel tips for vacation planning.

The truth is, it all depends on that family’s particular needs and vacationing style. While some families love to explore multiple new spots, others might have better luck returning to the same location year after year.

My friend, Paul Cimins, and his family is one of the latter group, so I asked him to share the benefits of vacationing at the same resort, Sea Colony Resort in Bethany Beach, Delaware, year after year.

Q&A with Paul Cimins of Autism Radio pool

 

Tell us about Bethany Beach 

Bethany Beach is not far from Ocean City, Maryland and is what I would label as a quiet resort. The best part about it, in our book, is the ability to drive there by car and bring everything we need.

We stay in a gated community resort there (sixth year in a row), which is less than 100 feet from the actual beach.

It was built in the late seventies-early eighties and boasts multiple pools for families to use, even an indoor/heated pool.
We have the choice of going to the beach or the pool during our week stay there, which ensures more flexibility if our non-verbal autistic son doesn’t feel comfortable with one particular setting that day.

 

 

Q&A with Paul Cimins of Autism Radio beach

 

What type of lodging does the resort offer?

  We rent a spacious three bedroom, 2.5 bathrooms, with a fully equipped kitchen timeshare rental apartment, so my parents can join us for the week and help with our kids with special needs.
The Sea Colony does provide bed linens, towels, and a maid service for an additional charge.

I’ve noticed that the best rental prices are the week before Labor Day, and the resort is a lot less crowded than in the prior summer weeks, so that’s the week we go.
We like to bring our own towels and linens to make things more familiar for our autistic son; he can have his favorite pillow and comforter and feel like he has a part of ‘home’ with him at nighttime.

Q&A with Paul Cimins of Autism Radio sand

 

How easy is it to follow a GFCF diet while you’re traveling?

That’ s another reason we ended up vacationing in the same spot for the past six years – the comfort.
There are several grocery stores outside the compound and we buy our supplies when we get there.

One store, in particular, carries organic items, as well as gluten-free casein-free ones, so it makes it pretty convenient.
My kid’s favorite spot is a donut place that has gluten-free casein-free donuts that are incredible, so we always go there for a daily break.

We do go out and eat since the restaurants are all within walking distance but I actually enjoy cooking for my family since I’m a professional chef by training.
One of the best bonding experiences we have is eating breakfast as a family on vacation. I make my own ‘secret’ gluten-free casein-free berry sauce and waffles recipe that I only make on vacations so you could say we’ve kind of developed our vacation rituals by now.

 

Q&A with Paul Cimins of Autism Radio breakfast

 

What is your kids favorite- beach or pool?

Our son started off with pools and slowly warmed up to the beach and ocean but putting on sunscreen is still a moderate challenge.
He is currently learning to swim in the sea. They have licensed lifeguards, the waves around there are rather calm, and the water is only about 4 feet deep with no jellyfish (so far).

He’s gotten better at sitting on the sand, which is swept on a daily basis, and building sandcastles with the toys we bring along. If he gets antsy, we swing by the small wildlife preserve area where you can watch dolphins, sand crabs, and sharks.

Q&A with Paul Cimins of Autism Radio family

What activities does your family enjoy while on vacation?

There are so many to choose from, so it depends on what the general mood is. Bethany Beach, like many other East Coast beach towns, has a fun boardwalk to explore. My kids have their special salt water candy store they like to go in and buy taffy from, and an old-fashioned ice cream parlor that has homemade gluten-free casein-free ice cream to die for.

There’s a tram that goes to the boardwalk from the resort itself for those who don’t feel like driving or looking for parking.

The resort itself organizes family social events like bonfires at night and treasure hunts, but there’s always watching TV or playing the WII that we bring from home.)
One of our family traditions is to go and shop at Ocean City MD outlets for school supplies.

Q&A with Paul Cimins of Autism Radio kite

How do you occupy your son on car rides?

He does great! It’s a 4-hour drive, so we bring a DVD along, and we tell him where we’re headed to get him excited. It’s when he returns home and realizes vacation is over that he cries.

Born and raised in  New Jersey, Chef Paul Cimins is a Culinary Institute of America graduate and owns Culinary Delicacies.
As a dedicated parent to two kids Emily (11) and Johnathan (8) with disabilities Paul has worked relentlessly within the autism community to help families of children with autism through his weekly podcasts entitled ‘Hope saves the day’ on Autismradio.org.
The internet has enabled Paul’s program to reach and support families  who want to share information on their personal experiences  globally.

 

Does your family have regular travel plans or do you change it up every year?

 

 

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