When Todd and I were married, we dreamed of all the places we would travel to and the adventure we would share. Before we had children, we would take trips. We mostly traveled the Pacific Northwest and a few trips to Mexico. We did not have the finances to travel overseas. One day, after the kids grow up, we will have the time and money to travel. This was our grand plan, and then plans changed. Life Changes by Thomas Rhett describes beautifully making plans and then life changes. We had Emily. The plans to travel once our kids grow up and move out were canceled.
Emily is not a great traveler. She does okay in the car, but planes are a different story. When she was a baby (and toddler), we flew to Colorado to visit family a few times. I also took both kids to Washington when the kids were 4 and 5. It was a challenging trip to do solo. I may have bit off a bit much, but still, things were manageable. When Emily was eight, we flew to Colorado to spend Christmas with Todd’s family. It was awful. She vomited in the TSA line (it isn’t a trip until she does). Emily fussed the entire flight (people are not very kind when your 8-year-old is throwing a fit) and kicked the seat in front of her constantly (I still feel terrible for the tolerant women in front of us). My father-in-law was embarrassed by her behavior. I was so anxious and dreaded the flight home the entire stay. The low-level anxiety impacted the enjoyment of our time with family. I knew then we would never fly commercial again. I have no desire to be the headline on the six o’clock news, “family with disabled daughter kicked off plane for bad behavior.”
Travel is almost impossible for many families in a similar situation. Parents that have children with complex medical needs, intellectual and developmental disabilities, autism, and other disabilities, are often unable to travel or vacation more than a short distance from home. Boundaries are set that are difficult to traverse. Many cannot be far from the medical services that they depend on. The child may have rigid schedules and does not tolerate change well. There is a lack of appropriate housing, restrooms, transportation, and facilities to accommodate our kids’ unique needs. Often our children require equipment and supplies that add up to a lot of extra to bring along for the journey. There is fear and anxiety about dealing with behaviors, outbursts, and/or bodily fluid incidents. I am only touching the surface. There are many roadblocks to traveling.
Going on a trip without our children is not always an option either. Taking a family vacation without part of the family can induce sadness, guilt, and a plethora of other negative emotions. We worry about our children while we are gone. There is also a shortage of good, qualified caregivers to entrust with our children. The cost of such care can be prohibitive as well. The anticipation of the challenges often stops us from planning and executing a trip. Often one parent travels with the typical children while the other parent stays home with the disabled child. When Justin was seventeen we traveled to Disney World for a vacation. Todd stayed home with Emily. It is a world of divide and conquer. One parent usually feels like they got the short end of the stick. Again sadness and guilt come along for the ride. (For the record, Todd thought I got the short end of the stick that trip.)
There are many challenges, but the task is not impossible. We took two road trips last year with Emily. A three-week trip from California to Ohio. We visited so many beautiful places. Emily enjoyed the trip and rose to the occasion, but it was difficult. Todd and I will both tell you that it was not a restful vacation, but it was worth the effort. The entire family went camping and to Las Vegas last November. This trip was easier because we had Justin with us. He prepared our Thanksgiving meal. My friend (and accountability partner), Cheryl, was kind enough to host the family with open arms for Thanksgiving dinner. She is used to Emily’s noises and feistiness since we talk on Marco Polo daily. It was a safe and welcoming environment. Emily was also escorted out of two places by security because she is unable to comply with mask requirements on that trip. Just a bump in the road and a funny memory from that trip.
Last week I decided to renew my passport. It expired in 2020 with not a single stamp on it. The last time we traveled out of the United States was in 2008. Todd’s parents were still able to care for Emily. We took Justin to Costa Rica for a week. I would love to travel and explore new destinations. I am in a listening circle and we have been discussing a meet-up in the future. We are exploring destination ideas. I am not confident that I will be able to make a trip work, and Todd is less than thrilled at the idea of me traveling internationally without him. I am keeping myself open to the possibility. The possibility that quality caregivers will come into our lives and watch Emily for an extended time. Hoping that one day Todd and I will travel together and see new places. The possibility of meeting my friends in a fun or exotic destination. I told Todd this weekend that I am a dreamer. I visualize things that are difficult to imagine actually happening but are not impossible. Adults call this visualization but isn’t that daydreaming for adults? You never know. Because sometimes dreams do come true.
One thought on “Disabled Children and Traveling Challenges”
I’ll be honest, this one really pulled at my heartstrings. As someone who travels regularly for work and leisure, I know in my minds eye how difficult travel with Emily must be. However, knowing something intellectually is not the same thing as visualizing the experience. As I closed my eyes and mentally placed myself in your shoes, I was overwhelmed by a deep sense of sadness.
I have said before that I see you as one of my everyday superhero’s. I mean it now more than ever. The level of patience required for everyday living is beyond what many people are regularly capable of, forget about special circumstances like traveling…
Like many people, there are many areas of my life with room for improvement. I feel like I’m pretty good in the compassion department, but I definitely have an abundance of room to work on my patience as an example.
I know better than to compare myself to others, so I will simply hold the mirror up for myself and if I don’t like what I see in the reflection, I can always make an adjustment.
On the dream front, I think you’re right…
Earl Nightingale once said, “We become what we think about.” To me, that means if you are focused on creative solutions for travel, then creative solutions will present themselves for you to evaluate. I also believe that like it says in Big Magic, ideas will present themselves for action, and if we don’t act, they will move on to someone else for assistance.
I see you and Todd finding an enlightened caregiver who really gets it and who is also somehow mysteriously and energetically connected to Emily and her needs.
I see a passport with stamps in it because of the message you are methodically developing to bring to the world. In the Bible it says, “your gift will make room for you.” I see your gift making room for all of you and particularly for you and Todd, because you can’t pour from an empty cup…
Thanks for so vulnerably sharing your travel experience challenges with all of us. A little empathy goes a long way.
Your article is written in a manner that evokes empathy.
Bobby Kountz, The Earth HeARTist
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