SMA and travel
Spinal muscular atrophy Caregiver

Kate V.

Mom

Planes, trains, and accessible travel

Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

First tip: Pack as much as you can in your suitcase. I have often had the fees waived for being over the weight limit because of things like power chair chargers. The words “medical necessity” go a long way.

Have your child prepared for what is going to happen when you go through security. Explain to them the procedures and go over what will be done. I try to get through as fast as possible because they pull Leah off to the side to scan her chair and pat her down. She knows to listen to the security people and to cooperate with them. She also knows to keep her eyes on me and to stay put. The less carry-on luggage you have, the easier and faster all this will be.

Leah drives her chair all the way to the gate. The gate agents have always let us preboard and have always been very helpful. Surrendering the chair is always the hardest. I always explain how to put the chair in manual mode and I take off anything that may get lost (harness, backpack, etc). I know some parents wrap the chair in bubble wrap or put a note on the chair with instructions, but I never have. Taking a before/after picture of the chair is also helpful, just in case. Once you land, look over the chair and make sure it’s functioning. In all the times we have flown, Leah’s chair has only been broken once (knock on wood). It was a nonessential piece of plastic that was broken. Insurance covered the repair and we were given two free round-trip tickets from the airline before we even left the airport.

Flying is not the only mode of transportation. We have taken the train from Milwaukee to Chicago, and that is so much fun. We also love family road trips. When we are planning a trip, we check the local attractions for accessibility. Sometimes that works, sometimes it does not. Kudos to my nephew’s fiancé who took the cousins to the caverns in Virginia and carried my daughter up and down flights of stairs (I think 175 steps was the grand total) so she could go on the “accessible” tour.

One of the most important things is to find another family or SMA friendly hospital where you are traveling to. If you have an equipment malfunction, knowing another SMA family is nearby can be a great help. They may have the supplies you need or the number you need for repairs.

My biggest tip is: do not be afraid to travel. I have always found people are more than happy to lend a helping hand. Planning ahead and planning for different scenarios is essential. Leah has decided she wants to go on a cruise. She has started planning it and is looking into accessibility for different ports. It’s a great learning experience for her, and educational. Your next adventure awaits. Go for it and have fun!

Other posts by Kate

Chore time

I like to think we’re a well-oiled machine in our house every morning, but I may be delusional. Every morning is started with the best intentions, which quickly evaporate into controlled chaos, and ends with a sprint through the door, praying we didn’t forget anything.

READ MORE

Turning first impressions into teachable moments

People will talk about our kids. Little kids will ask them questions. Adults will ask them questions. Some will just point and stare. Cute little kids in wheelchairs are hard to resist. Teaching your child how to handle these interactions with strangers will make these interactions a lot less stressful, and even fun.

READ MORE