We love to travel. Honestly, it can be challenging but with careful planning, patience, and some help along the way, you can make it happen. The most important advice I can pass along to you is to leave yourself plenty of extra time both while traveling to your destination and when you get there. It is also important to keep your expectations realistic. It took us some practice to realize what would work (or not) for our child while traveling.  Take some time to make a list of the areas (physically, mentally, emotionally) that require extra time, care and attention, and think about how this may affect your travels. What do you need to do ahead of time to make your travels easier and more enjoyable? This will help you organize yourself and prepare not only the practical and material items for your trip, but you will also need to mentally prepare yourself. Now when we prepare to travel we think ahead of time the potential issues we may face along the way. **You also may wish to visit our recreation section with accessible/adaptive activities including links to travel guides and camp directories http://cpdailyliving.com/activities/

Where can we go?

Here are some resources that may help you figure out places to visit that suit your family.

Sites founded by families that have children or relatives who are wheelchair users (three have CP):

1. Accessible Travel Reviews-This website  was recently created by a mom whose eldest daughter has CP and uses a wheelchair. Their family loves to travel but has a modest budget so their family was always scouring the internet for information on the most accessible and affordable places to travel. Unfortunately, a marketing description isn’t always as reliable and detailed as first-hand feedback from a family or individual with a disability who has been there. With this in mind she took the leap to start Accessible Travel Reviews. Very exciting!!!

2. Have Wheelchair Will Travel-This is a facebook page started by a Sydney, Australia based family who loves to travel and whose teenage son has CP and is a wheelchair user. Their passion for travel led them to create this virtual space detailing their personal travel adventures and insight on traveling to places with their son.

3. You also may wish to check out this blog “Kellisa’s Path”, written by a dad who is the father of a young disabled girl and his determination to push his daughter along as they share a passion for travel and adventure. There website will be moving shortly: http://www.kellisaspath.com

4. Disabled Travelers website: A site developed by a younger brother of a woman with cerebral palsy and cognitive disabilities who uses a wheelchair.

5. Euan’s Guide: Based in the UK, this website and related social media venues, offers an opportunity to share and/or read  reviews of accessibility for places you have visited or wish to visit.

6. Access Anything: An online travel resource for people with disabilities. They began in 2003 and published two guidebooks in 2005 and 2007. With their partners at Adaptive Adventures, we helped bring three inspiring adaptive sports camps to our home in Steamboat in 2006, which we turned over to STARS (Steamboat Adaptive Recreation Sports) during winter of 2010-2011 as it stretched its wings as a new non-profit organization.

Other Resources:

39 Theme Parks with Special Needs Access Passes-New!! Summer 2015 by Friendship Circle of Michigan

NBC’s Best Vacation Spots for Special Needs Families 2013

Travability-A fantastic website dedicated to providing accessibility information for some of the world’s best travel destinations. They have a wonderful facebook page as well.

Access Anything-Adventure travel for people with disabilities

We went to Disney World and had a fantastic experience. Here is the blog post I wrote about it. *Please note that the special needs program at Disney has changed since I wrote this post.

Morgan’s Wonderland-An accessible amusement park in San Antonio, Texas.

What to bring

What should I bring in my purse or carry-on bag?
Lots of wipes, tissues, fidget toys, emergency medication, a juice box holder with one juice, (some TSA agents will argue this one so be prepared to give it up unless you have a doctor’s note) easy to grab snacks for your child, flexible straws, and an empty sippy cup if you can fit it somewhere.

What should I bring in my diaper bag?
Diaper considerations: We use cloth diapers but when we travel I sometimes choose to have Maya wear disposable diapers with a cloth diaper shell over top. This was my mom’s bright idea because no matter what we tried (disposable or cloth) everything leaked. This combination has done the trick for us. For more information on cloth diapers see the “potty training section” of the website. 

Changing pad or blanket depending on your child’s age

Anti-bacterial gel and/or wipes. Make sure the gel is not over 3oz for air travel, and be sure to keep anti-bacterial wipes and/or cleaning wipes separate from the wipes you use on your child!

Bring a change of clothes or two. It is awful for you child to be stuck on an airplane or in the airport in wet/dirty clothes. This is a must have!!

Wet/Dry bag: Put dirty clothes in the “wet” portion of the bag or you can bring some plastic bags for dirty clothes as well.

Things to consider

When traveling with Maya we have discovered the following considerations are important to us:

Where is the nearest hospital and how close do we need to be to it?
If you are choosing a vacation what type of vacation will be most comfortable for all of you? You will want to consider a destination’s accessibility (i.e. New York city is a tough one), what activities are available and will there be something for your child to do? We chose to go on a cruise when our daughter was a young toddler because everyone could participate in a variety of activities and you can organize your day around how your child is feeling (and yourself and family) without having to worry about traveling from one activity to another.

What medicines do we need to take for our child? Do we need to concern ourselves with keeping medicine refrigerated or below a certain temperature?

What does your child rely upon to sleep comfortably?  For example, does your child listen to music, like a certain blanket or stuffed animal etc.?

Do you need to arrange to have a car seat at your destination?
If you are renting a car you may choose to do this and ask the car rental company if they have them or if they work with a company who does.  If you are bringing your child’s car seat make sure you know how to install it. **In many cities having a car seat in a taxi cab is not illegal but it certainly is not very safe. Sometimes you will not have a choice like in fast moving cities such as New York where you take a cab just to go a mile. If you are calling a car service be sure to let them know you have a child with you who is in a wheelchair (if applicable to your situation) so that they bring a large enough car or know to bring a van if they have one. Also, make sure you tell a car service whether you need a car seat or booster chair. We had a company bring a booster seat because we did not specify what we needed. We have an extra car seat that we have purchased for Maya’s grandparents to use and for us to use when we travel. It is less bulk and lighter than what we use in our cars but it also has excellent safety ratings. If you intend to do a lot of travel and intend to bring your own car seat, it may be worth the investment to purchase another seat.

What entertainment do you intend to bring for your child?
Movies, magnetic games (great for an airplane), books, fidgeting toys etc, tray for the car.

Sending supplies/boxes ahead

Especially when Maya was a baby we would send a box or two to our destination and this took a lot of pressure off of trying to figure out how to pack everything we needed. We often sent or brought the following:

  • Bed Rails: We have successfully used Bed Bug Bumpers and have even been able to pack them in our suitcase. These are foam bumpers that fit under fitted sheets to help prevent your child from rolling off of the bed. We also put pillows on the floor for extra protection. Occasionally we have used an inflatable mattress or made a bed on the floor for her rather than having her sleep in a raised bed.
  • Supportive sitting chair: We have had some luck with the “Seat 2 Go” which has an option for a pommel. We have had some issues with this seat including the suede-like fabric on the outside which makes it harder to clean, and sometimes it does not provide enough support side to side for Maya. It is the best relatively compact piece of sitting equipment I have found. I am hoping the company will work on making it comply with FAA regulations because then it could be three ways including supportive sitting on the plane, use for general supportive sitting (ie. hotel room), a booster seat for use in restaurants. That would be fantastic! UPDATE: We just began using the Special Tomato Booster Seat and Back Liner for traveling. It offers much better support for Maya and it is easy to carry and clean. If you wish to have a lower profile seat, or if you child requires less support, you may wish to try the Special Tomato Seat Liner instead of the Booster Seat. 
  • Juice box holders: These have been life savers.  Our daughter could use a juice box at an early age but she always spilled it all over herself. This helps with that problem and is great for traveling. You can even find them in the grocery store:
  • Diapers
  • Baby food/Formula
  • Sippy cups and straws
  • Special Utensils
  • Bibs (disposable)
  • Extra wipes
  • Bathing chair
  • Portable booster seat: We had great success with the one associated with this link.
  • Books, small games
  • Portable potty: Sometimes we would use a foldable toilet chair for use while in transit and then use something a little more elaborate when we got to our destination such as the Baby Bjorn Toddler Potty Chair:

Air travel

Oh, adventures in air travel. Some days are better than others but the more preparation you do, the better off everyone will be. We have done quite a bit of air travel with our daughter since she was an infant. The most important thing you can do is prepare and educate yourself about what to expect on your trip and I will help you do this. You have extra responsibilities and gear when traveling, so bring lots of patience and recognize that as always in life you will be dealing with many different personalities. Some people are simply angels (like Maya from United who twice has helped us get from one Atlanta terminal to another and carried our bags!), and some make you want to scream (like the jerk from USAir who wanted to argue with me about FAA regulations instead of focusing on helping us figure out how to get on the airplane). I have traveled alone, with my husband, and also have arranged to meet up with a family member during a transfer. We have done it all when it comes to air travel, and I look forward to sparing you some of the stress and anxiety of our less than graceful moments.

For US based travel: If you call the TSA Cares toll free number at 1-855-787-2227 72 hours in advance of travel they will arrange to have a representative meet you curbside and take you through security and to your gate! This would have spared me some frustration (even some tears) when I used to try and travel with Maya alone. There is a “Passenger Support Specialist” at every airport in the US so pass the info along!

“TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager at the airport when necessary.”-From the TSA.gov website

Having trouble with your seat assignments? If the general reservation’s agent isn’t able to help you, contact your airline’s corporate office. They often will make arrangements ahead of time to ensure traveler’s with disabilities and one companion are seated together, along with working to meet other requests such as a reserving a more optimum seat assignment for boarding and deplaning, or using the bathroom etc. Here is an Airline Consumer Contacts list.

Southwest Airlines Medical Transportation Grant Program

Applying for an exemption to FAA policies/rule-making:

I.E.: requesting use of a orthopedic positioning seat for your child’s use during take off and landing.
http://www.faa.gov/regulations_policies/rulemaking/petition/

Information from the FAA website about traveling with a disability:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1572.shtm

FAA update to policies regarding passengers traveling with disabilities:
http://www.tsa.gov/assets/pdf/special_needs_memo.pdf

The Air Carrier Access Act: The Department of Transportation has a rule defining the rights of passengers and the obligations of airlines under this law. This rule applies to all flights of U.S. airlines, and to flights to or from theUnited States by foreign airlines.  The following is a summary of the main points of the DOT rule (Title 14 CFR Part 382). You may obtain an accessible electronic copy of 14 CFR Part 382 or this fact sheet at http://airconsumer.dot.gov  or call DOT at 202-366-2220 to request a copy.

The USDOT continues to maintain a toll-free telephone number (including a toll-free TTY number) that consumers who experience disability-related air travel service problems may call to obtain information and assistance. The disability hotline is currently operational from 7:00 a.m. to 5:00 p.m. Monday through Friday, excluding Federal holidays.  Members of the public that call outside those hours (i.e. evenings, weekends, and holidays) can leave messages and those calls are answered when the office reopens the next business day. The hotline numbers are 1-800-778-4838 (voice) or 1-800-455-9880 (TTY).

TSA now has a toll-free helpline for travelers with special medical needs and disabilities: The helpline number  is designed to assist travelers with disabilities and medical conditions, prior to getting to the airport. Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.

Important lessons learned

It is not just travelers who are grumpy these days, it is also the people working in the airports and for the airlines. I do not want get into a whole discussion of why this is, but needless to say I have learned to save myself a lot of wasted energy getting upset over how inconsiderate I feel people are during the travel experience. Remember, people have their own problems, stressors, and distractions, and traveling is sure to make the most patient among us feel frazzled. When people go out of their way to offer assistance or a smile, I welcome it, cherish it, and have allowed myself to feel tremendous gratitude (rather than cultivating an attitude of entitlement) for their kindness. I will never forget the pilot who had tears well up in his eyes as he watched us get off of the airplane. He and the entire staff each grabbed a bag from me. It is people who go out of their way to offer assistance that can truly make travel easier for us and has left me with a tremendous feeling of gratitude.

Check with doctor to make sure it is ok to travel with your child, bring medicines and necessary supplies if so. If you are traveling into a different time zone ask your doctor about when to administer your child’s medication. You may take medication with you through security without the traditional limits on size. I carry all of our daughter’s medicines in my backpack style purse and I would suggest bringing syringes or anything else you may need to administer medication. You want to make sure you have access to it in case your plane is delayed and/or if your luggage gets separated from you.

“They moved our seats 24 hours before our flight and now we are not sitting together.”
This happened to us recently and we received an e-mail notifying us of the change. First my husband called and he was told we would have to work it out when we got to the airport. Since we have had difficulty with successfully handling issues like this at the airport, I called and explained our situation. I said we all needed to sit together because my daughter has a disability. Magically, our seats were changed. One of us was across a row but we were very close. This is one reason I enjoy flying Southwest. We do not have to worry about our seats being changed because no one has assigned seats. Also, for us it does not matter when we check in for our flight because we are able to pre-board (you must ask for pre-boarding services at the flight gate).

“My child cannot sit up on her own in the seat with the regular seat belt and she is above age 2 (no longer a lap child).”
This used to be really hard for us. Since our daughter cannot sit up on her own we were constantly moving her up in her seat only to have her slide down again. I thought I came up with a great solution of having her use an insert or special seat only to find out that this was in conflict with FAA regulations for take-off and landing. You have to have only FAA approved seat belts and seating for the airplane. I did read about a caveat to this which requires some advance planning. You may read about it below. What we do now to help her is to place shelving paper (the bumpy foam kind) on her seat, we place half of a noodle under her knees, and then we use the CARES seatbelt system. You can look at it here: Kids Fly Safe. This seatbelt system is the only approved FAA alternative to the regular seatbelt on the airplanes. Once we are in the air and before landing, you may use an orthopedic positioning device. We have used the Seat 2 Go and the Special Tomato Booster Seat. The combination of the Booster Seat and the Kids Fly Safe seat belt is the best solution we have found for Maya. You may also use your car seat. We cannot manage carrying the car seat anymore with everything else we have to carry but if you find this works for you this item or something similar may help.

http://www.gogobabyz.com/product-i14550-c26-gogo_Kidz_Travelmate_.aspx

By the way…car seats travel free on all airlines but I would suggest purchasing a bag or covering them since we had ours damaged previously.

What is the easiest way to get through airport security screenings?

Be cooperative whenever possible. It often seems ridiculous to us to have our disabled children patted down in their wheelchair but that is the reality we face. I have never had anyone disrespect our child in the process. When she was smaller we used to carry her through the screening machine but she has gotten to big and it takes too long to get her in and out of her wheelchair.

If you would like your child to remain in her chair you need to ask for a “manual screening”. We have always had a same sex TSA security officer but apparently you may need to request this option. If you have someone else traveling with you have them go through the screening process and collect everyone’s belongings on the other side. One parent or person will accompany the child while they are being screened. Expect to have your child patted down head to toe and if possible they will lean your child forward to check their back. Recent update to TSA regulations now do not require children under the age of 12 to remove their shoes. If your child is older than 12, and you have concerns about removing his/her shoes, talk to the TSA rep or supervisor.

If you are traveling alone with your child you may ask a TSA security officer whether you should collect your belongings before they begin the screening.  It always makes me uneasy to think about my purse and other items laying on the belt with no one to look after them. Some security screening stations are more organized then others so once again you may need to speak up about and make them aware that you are traveling alone and that your belongings are on the belt.

**Do not touch your child’s chair once you have gone through the screening machine and before she has been screened. I had my head bitten off by an officer who said that I tainted the security screening by doing this. So I keep my hands behind my back and speak quietly and encouragingly to my child. If you are wondering about the reason for this, it is because if the child’s screening turns up something questionable (and I was touching her chair) we both have to be re-screened again.

**Remember if any of this makes you uncomfortable you may choose to carry your child through the screening machine but you will need to send their chair through the belt if it collapses.

How do I have my child eat comfortably in the airport terminal?

Will you have your child eat in his/her chair?  Do you need to bring a portable eating chair or can your child sit in a regular seat? I have found that it is crucial for my child to have a tray especially when I traveled alone with our daughter. I highly suggest bringing your child’s wheelchair tray or a booster chair with a tray if you your child is unable to sit up. Unless you have a lot of time, eating can be a bit stressful and sine many of your children may need extra time for eating anyway, you want to minimize your stress so that they can be comfortable. Here is a picture of the Fisher Price Healthy Care Booster Seat we used to bring before our daughter had a wheelchair with a tray. It has a long handle for carrying and a three point harness. It is also very compact which is my third most important consideration after my child’s safety and comfort.

How do I board the airplane?

Be sure to let the gate attendant know that you will need extra time getting onto the plane because your child is disabled. When our daughter used to use a regular stroller before we got her special needs stroller, we had to ensure people understood that our child was genuinely disabled and required assistance. If you are traveling alone I would suggest always requesting assistance when you book your flight.  You will see an option to do this when you purchase your tickets. I have spoken with Delta airlines about the confusion created by the limited options they list for doing this. There is no option for requesting assistance, and notifying the airlines or their contractor that we have our own chair. Very often the only option is “needs assistance and requires a wheelchair”.  So inevitably someone arrives with a wheelchair and is confused by what we need.  If you find yourself in this situation you tell the person, “I don’t need the wheelchair but I do need assistance because my child has a disability and I am traveling alone”. That is all they should need to hear. Fortunately Southwest makes these distinctions and makes it easier for us. Even if you do not feel like you need assistance if lets the airlines know they have a disabled passenger and they plan accordingly.

I learned my lesson when we had an outbound flight in Atlanta that was late and since the gate attendant did not see a disabled passenger on her roster we wound up carrying our daughter and her wheelchair down lots of steps, onto a bus, and then carried her up steps onto the airplane.  Keep in mind that we could have refused to do this but my husband was with me and we felt pressured to get onto the plane. If that happened today we probably would have said “no”. She has gotten too big and it would be too dangerous. Do not sacrifice you or your child’s safety because of the unspoken (sometimes spoken) pressure to move everyone along at the airport. What we learned that day is that it is always best to state that you are traveling with a disabled passenger when booking your flight. If the airline’s website is too archaic to process information specific to your situation so be it. At least you will have done your part in notifying them that they may need to make arrangements such as having a lift for your child to get onto a plane (if you have a flight where they have passengers walking out to the runway).

How and when do I get off of the plane?

I generally find it easier to deplane last since I like to take my time and we usually have to wait once we are off of the plane for them to bring her wheelchair to us anyway. If you have to make a connection and are traveling alone, I typically ask the flight attendants if they would help me carry my bags off of the plane but they often ask. Also, you may ask them to let the gate attendants know that you are making your way to the next gate but you may need extra time. They may arrange to have transport pick you up and take you to the next gate.  If you have arranged for assistance someone will be waiting for you (probably with a wheelchair) at the entrance to the plane. I suggest offering a small (or large) tip once you have reached your next destination with the attendant. If you need to take your child to the bathroom the attendant will wait for you and are required to do this so do not feel pressured or guilty that you are making them late for the next person or task.

Using the airplane bathroom

New!! Check out this video about the new Space Flex concept by Airbus providing wheelchair accessibility aboard single aisle aircrafts! It’s already being used by European airliners such as Latam. http://www.runwaygirlnetwork.com/2014/12/02/new-video-drives-home-the-benefits-of-a320-space-flex-lavatory/

The following is an article from Amsvans, “Inaccessible Toilets on Planes ‘Humiliating’ for Disabled”

There are two pioneer airliners who reportedly have started planning/installing accessible restrooms on some of their airplanes. One is Qantas and the other is Singapore Airlines. Check out this blog post from Have Wheelchair Will Travel and their experience with Qantas.

Airplane travel questions you may have:

  • “My child has liquid medications that must come on the plane with us but they exceed the 3 oz limit what do I do?”
    See the following link to TSA’s website regarding special needs accommodations:
    http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm
  • “My child cannot drink out of a regular cup and/or has special milk, can I bring it on the plane?”
    Yes you can:
    http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm
  • “My child will be traveling with an aid with/out me do we have to pay for the extra seat”?
    I have heard that aid may accompany a disabled passenger at highly discounted rates. Check with individual airline carriers to find out about if this is true for them.
  • “How do we travel with our wheelchair and have access to it during transfers, boarding and deplaning?”
    Let the gate attendant know you would like a tag for your child’s chair or stroller. They usually know but make sure they understand you need access to it when you get off of the plan and you do not wish to have it go through baggage.

Advocacy/innovative ideas for improving airline travel for people with disabilities:

Check out the TravelChair developed in the UK by Meru (currently designed for use for ages 3-11). Some commercial airliners have started stocking them beginning with Virgin Atlantic. Although only currently approved for use in the UK, Meru is seeking FAA approval as well. Here is an article about the Meru travel chair that also has a video offering more information about its use.

There is also a UK based Try b4u Fly program for children and adults with disabilities and their families a unique opportunity to trial specially designed aircraft seating support for use on airlines. The Meru travel chair for children is one of the items available to try through this program. 

The following organizations may be interested in networking and/or hearing your feedback about improving airline travel:

Association for Airline Passenger Rights (AAPR)-This organization holds an annual accessibility conference

Airline Passenger Experience Association

Car travel

Other travel resources

Here is a facebook group for people with disabilities who love to travel. The founder welcomes parents and caregivers who wish to join.

United Cerebral Palsy tips for traveling:
http://affnet.ucp.org/ucp_channelsub.cfm/1/18/111

US government Department of Transportation disabled travel publication:
http://airconsumer.ost.dot.gov/publications/disabled.htm

An article from Parents Magazine on special needs travel:
http://special-needs.families.com/blog/flying-with-a-disability#