19 Tips from an LGS Family: Traveling When Your Child Has Special Needs – Part 1

Traveling is certainly possible and can be more relaxing with some pre-planning and organization.  Some of these ideas may not be applicable to you and your family.  I have compiled this list based on over 30 years of international traveling with our son Nick who has been diagnosed with Lennox-Gastaut Syndrome (LGS).

When he was born, I knew right away that there was something different about him. I was a young mom of 22.  He was my second son. Nick lives with his dad Arden and me, Eva, his mom in Carnation, Washington, USA. He is 38 years old and we take care of him. It is a big job. We have had a lot of help along the way.

We raised our four kids and quite a few other people’s kids, so he has a lot of siblings that love him. Nick has traveled with us to many beautiful places on our planet. He loves, loves, loves airplanes and airports, which is great for us.

Planning Your Trip

If you have not previously traveled to your destination of choice, one of the first steps is to gain information about this particular place.

Familiarize yourself with where you are going. The internet is a great resource. There are websites and blogs about most major cities. You can begin by using your search engine and type in the place name.

Ask other questions through your search engine also, such as: How accessible is the area?  What are your specific concerns? Many cities have companies that cater to individuals with special needs. These companies can be another great resource too. Just remember that they are for profit businesses. When we decide to spend a few days in Paris, France, we learned about a travel company that would create personalized day tours for those traveling with wheelchairs. We didn’t book this service ahead of time, although that was a possibility.

Eva’s son viewing the Mona Lisa

The hotel staff offered to help us find a cab who would give us the same service for a daily rate that turned out to be dramatically less than the travel company. We hired the individual cab driver for two days and had a delightful time. He waited in the cab stands for us to tour the various famous sites around Paris and even circled multiple times around the Arc de Triomphe. We loved the excitement of that portion of our day.

I recommend you keep a notebook with your findings.  You can refer to it while you are on your trip.

Create the Optimum Flight Schedule – Find out how long will the trip take including the layovers. Include in your travel time calculation not only the time you need to get to the airport but also remember you will need to get to the airport at least two hours ahead for domestic flights and three hours ahead for international flights. We try to purchase direct flights if possible or create an itinerary with the least number of layovers.

Many airlines will let you have an extra-long layover, up to 23 hours long and not charge you more for the flights. This can be helpful to avoid sleep deprivation when you are traveling long distances. We break up our trips to Europe into two days. We stay in a hotel that has a restaurant located near the airport with shuttle service. Be sure to add a wheelchair pusher to your itinerary for airport transfers even if you are traveling with your own wheelchair. These airport employees are familiar with the locations of the gates and other services. It is quicker and easier to get through the security check points and onto your assigned gate.

When making your flight reservations, be sure to check the airplane seat configuration.  You can phone the airlines and ask the airline representative to help you choose seats near to the onboard restrooms and/or near the front of the plane. Figure out ahead of time where it will be easier for you during flight time. Nick likes the window seat and it is easier for him to move to his right than to his left, so we try to sit on the left-hand side of the plane, one row away from the restrooms. The seats in the row right in front the restroom usually don’t recline. On long flights, this is a comfort factor. On short flights reclining seats don’t matter to us. We don’t typically choose the bulkhead seats because all of your hand luggage must be stowed in the overhead bins during take-off and Nick prefers to have his bag in front of his feet. Nick doesn’t qualify to sit in the exit row seats, so that is never a choice for us.

Review Prescription Medicine Requirements – Consult with your doctor.  I suggest that you have written information from your doctor explaining your specific medical condition. Our son has epilepsy, so we have the names of the medications he takes including the generic names. We have this list available with our travel documents. We work with our doctors to organize the medicine schedule when we are changing time zones. Be sure to have packed in your hand luggage ALL of your medication in prescription labeled bottles. In addition we travel with at least two more weeks of medicine than we will typically need for our trip. This is so we are prepared for possible dosage changes or medical emergencies. Most insurance companies allow you to request a “vacation” refill on the prescriptions to make sure you have enough medication. We often will begin adjusting Nick’s medicine dosage by 30 minutes to an hour earlier each day for a few days before we travel to minimize the disruption to the dosing schedule.

Read the Airline website –  While many airlines have similar policies, it is important to learn the policies for traveling with a disability and the accommodations that your airline does offer. Some airlines require doctor-signed medical forms for traveling with any medical equipment including CPAP machines and Vagus Nerve Stimulator implants. Other airlines don’t require this paperwork. Many airlines have brochures you can request or download from their website.

Get a Medical Alert Card or ID bracelet – your medical ID card or bracelet should include, First and Last name, Medical condition, Medications, Allergies, Emergency Contact Numbers, and Dr. Phone number.

Download a free card here. There are other systems you can check out here.

The Epilepsy Foundation has a first aid wallet card in their store. Keep the medical alert information and registration card for medical equipment such as the Vagus Nerve Stimulator or any other adaptive or assistive devices with your travel documents. We have created a seizure protocol list which we have put in a plastic bag with Nick’s seizure rescue medicines.

Packing – Eligible Accommodations There is no limitation for liquid or gel prescription medications that are properly labeled. Be sure to review both your particular airline requirements and TSA requirements. Often you can carry on-board medically necessary items that the general public can’t carry.

Luggage requirements – there are size and weight limitations that vary by location in the world. Review the exact requirements each time you are traveling as they can change quickly. We pack all medically necessary equipment in one bag. The airlines will carry medical equipment at no charge to you. In addition, we put a complete change of clothes for everyone travelling with us, a plastic garbage bag for soiled clothes, wet-wipes and two adult sized bibs in our hand luggage. If there are unexpected changes to our itinerary, we are prepared.

Check back tomorrow at 3:30 pm EST for Part 2!

About the Author: Eva Doherty Gremmert is a renaissance woman. She is a talented, published author, a successful business woman, a sought-after public speaker and a professional genealogist. Her first work of fiction, “A Cottage in Donegal. Mary Doherty’s Story,” was self-published in 2011 and has sold over 3,000 copies. It is an entertaining and evocative read written from Mary’s perspective. Her current project is a memoir detailing her journey raising her son Nick who was born in 1979 with multiple disabilities, and is scheduled to be published in 2018. Beginning this year, Eva has been publishing a blog on her website with short vignettes of her life experiences and lessons learned from parenting Nick. She owns a tax preparation and business development firm, founded in 1981. She’s assisted many non-profits over the years. Eva has researched and published five books on her family history and hosts two major genealogy research websites.She and her husband, Arden, have been married for 40 years. They spend their time between their homes in Carnation, WA and Carndonagh, Co. Donegal, Ireland. They have raised four amazing children and have ten beautiful grandchildren.


Are you going to the LGS conference in a couple of weeks? Use these tips to help travel!

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