CJ and Maya

With summertime in full swing and vacations spots ready to explore, here are five tips for reducing stress and maximizing fun when traveling with children with special needs.

1. Do your research.

The more you know, the better prepared you’ll be. Research crowd sizes, wait times, guest assistance and disability guides for your destination. These days, nearly every popular tourist attraction provides information through an app, map or guest relations department that can tell you everything you need to know. Ample research before the trip allows for more focus on fun during the trip.

2. Share your research with your children.

Many children with special needs aren’t big fans of surprises. Let them know what to expect. Your destination should have a website with videos of its rides and attractions. If it doesn’t, check YouTube for videos previous visitors have shared. Talk to your child about what to expect to help reduce any anxiety, while also helping to build excitement about the trip.

3. Communicate with the staff.

maya and cj

I am a full-time language arts teacher and a part-time small business owner. I am also the mom of two children with special needs. Both Maya, age 6 and Christian, age 3 were born with a rare metabolic condition called Propionic Acidemia (PA). The genetic condition does not allow their bodies to process protein properly. Children with PA are on a very strict/low protein diet in combination with specialized formulas and medication. They require many appointments with a genetic team and need their health monitored closely.

Managing my children’s care can often feel like its own type of job, which has provided me with several skills I would have never predicted to be part of my everyday life. If my career as a teacher or small business owner does not work out for me, I can think of at least three other careers that I am highly qualified for thanks to PA.

1. Mathematician/scientist. While some children with PA are tube-fed, Maya and Christian both eat by mouth. Maya is allowed to consume 12 grams of protein daily and Christian is allowed 8 grams. Reaching these precise numbers requires a lot of counting, weighing and calculating. My kitchen often looks like a science lab filled with scales, measuring cups and food journals. For example, if Christian wants chocolate-covered raisins, I look at the nutrition label and see ¼ cup equals 2 grams of protein. Then I see that a ¼ cup is equal to 32 chocolate-covered raisins. After I watch Christian eat to make sure none of the raisins end up on the floor, under the couch, or spit out, I recount that he ate 21 of the 32 raisins which equals 1.3 grams of protein. I add it to the food journal. This meticulous counting continues all day, every day, for both children.

I recently read an article from The Mighty titled, "16 Secrets of Special Needs Dad”. These men shared what they wish the world understood about them. One of the quotes that stood out to me was from a dad who said, “As strong as I may seem on the outside, I’m scared as hell on the inside for what the future holds for my little guy.” This quote brought back a memory from one of my daughter’s trips to the hospital.

My daughter Maya was having complications with her propionic acidemia, and we had exhausted all other options. We had her on the “sick diet,” but she was still vomiting and presenting large ketones. The genetic team said she had to go in for IV fluids and monitoring. This is when I break down. I’m normally able to keep things under control and the household running smoothly.

Everything changes when I pack the hospital bag.