Hand to Hold's Official Blog: Written by Parents for Parents

Traveling with a Special Needs Child

A family Thanksgiving trip to the mountains

A family Thanksgiving trip to the mountains

Traveling with children is stressful.

Traveling with children with special needs is even more stressful.

Traveling with children with special needs during the holidays is even more stressful.

I remember the first time we traveled with Joseph after his 228 day NICU stay. Although I was thrilled to feel like a “normal” family traveling, I don’t know that I ever really relaxed on that trip. What if we forgot something? What if he got sick? What if we ran out of formula even though we packed extra cans? What if his g-tube came out and the replacement we brought was faulty?

Planning ahead is key when traveling with a special needs child. Spontaneous trips become a thing of the past. Waiting until the last minute to pack almost guarantees that some important item will be forgotten. I will admit – if we can’t get there via a short car trip, we don’t go. We have not yet ventured into flying with all of his equipment.

Start making your list well in advance. Go through your daily routine and write down every single piece of equipment and medication you use. Even if you think you have it memorized – write it down. You will be surprised how you can forget the simplest of things. We once forgot the pill crusher for Joseph’s medication. While it wasn’t something major to forget, we still forgot it because I thought I could pack without a list.

Do you have enough medicine for the trip plus a few days extra in case something happens and you don’t make it home as planned? Do you have extra medical supplies such as nasal cannulas, oxygen sensors, g-tube, apnea monitor, syringes, gauze pads, suction equipment, feeding bags? Do you need to order any supplies or medication before you leave? Always take extra supplies.

If you have a feeding pump or apnea monitor, did you pack the charger? Do you need to take the pole with you that the pump goes on or are you going to be creative in hanging it when you get to your destination? In the beginning, we traveled with the pole for Joseph’s Joey pump. That is one sure way of getting some strange looks in a hotel! We decided that was one thing we could travel without and we now take the travel backpack instead. We prop it up with pillows at the end of the bed each night when traveling (Joseph is on continuous g-tube feeds at night).

If you have oxygen in your home, even if your child hasn’t used it in three months, take it. The one time you don’t take it will be the one time you need it. It is much safer to pack it and not need it than to get three hours from home and not have it.

I always research the destination where we are going. Is there a children’s hospital nearby? Could we get there quickly if needed? Is there a pharmacy that can fill any emergency medications? Don’t forget your insurance cards! Last Thanksgiving, we were traveling to a cabin in the mountains for a week. I mentioned it to the pediatrician when we were at a check up and she gave me a prescription for an antibiotic “just in case.” I packed the prescription amongst all of the other equipment not thinking we would need it. (Note: I know doctors all have different philosophies on this. We have been with our pediatrician for so long and have a great rapport with her. She knows that we know when or when not to use an emergency prescription).

As we were driving to the cabin, Joseph just didn’t seem himself. He was coughing, pulling at his ears, lethargic – all of his classic signs of getting sick. We found a pharmacy en route that filled the prescription. I am so glad we had it. Had we not, our trip would have been cut short due to some nasty bug.

Does your child wear hearing aids or have glasses? Joseph has one cochlear implant and one hearing aid. We always have extra batteries with us but when traveling away from home we have to pack an extra processor, cables, and a coil. If any of these devices malfunction, Joseph will not be able to hear.

Does your child have food allergies? Do they require an Epi-pen? Do you need to take food for your child or will there be food for them at your destination?

With a little planning and making a list, traveling can become “easy.”

Oh – don’t forget clothes, diapers, and wipes. You will need those as well.

Most importantly, don’t forget to have fun, enjoy your family, take lots of pictures, and savor every moment.

Laura Martin About Laura Martin

Laura B. Martin (GA) is the NICU Ambassador Director at Graham’s Foundation and keeps parents connected with their NICU by serving as a liaison between the NICU and the foundation. She is a former middle and high school teacher and is now mom to Joseph, Campbell, and Emily. Joseph and Campbell, fraternal twins, were born at 24 weeks gestation. Campbell lived for 23 beautiful days. Joseph spent 228 days in the NICU and also experienced a near fatal bout with NEC that left him with Short Bowel Syndrome. He also has a g-tube, auditory neuropathy, hypotonic cerebral palsy, asthma, vision impairment, hypothyroidism and multiple food allergies. Even still, he is a happy and active child. Laura can be reached via email or her personal blog.

Comments

  1. Great tips here! Just another thought or two to add:
    Once you’ve made your list, laminate it! Then, you don’t have to figure it out again from scratch each time (increasing the likelihood for forgetting something). Use a dry-erase marker and you can wipe it off easily for re-use.
    Talk with your equipment/supply company. Some are good about shipping things to your destination (so you don’t have to bring every single thing) or there could be a branch office nearby that can help you out if there are equipment companies.

Speak Your Mind

*