Accessible Journeys’ (AJ) guest editor, Jennifer Allen of the Winter issue, interviewed Kristy Cook of Accessible Adventures about travels with her son Robbie.
AJ: Tell me about diagnosis day. What did that mean for you and how did it impact your family?
KC: When Robbie was nine months old he was diagnosed with a rare form of epilepsy called infantile spasms. These little seizures are known to be catastrophic to the development of children. The hardest part of this diagnosis was it gives no true insight to your child’s future. If cured quickly, children can have completely typical lives. But if treatment fails, it can lead to devastating cognitive delays, the need for a wheelchair, to be tube fed, etc. As a family we had no idea where his diagnoses would take him or how to prepare.
AJ: What happened next? How did you get from there to sharing accessible adventures?
KC: Robbie spent about five years battling up to 30 clusters of seizures a day. He tried every treatment available including a corpus colostomy brain surgery. His needs increased with his age and by the time he was getting close to seven years old we realized we needed a new plan. By then his seizures were changing and, although less frequent, he had atonic drop seizures and was hurting himself. He needed a new level of 24/7 care. We took a leap and moved from Florida to Colorado to access better healthcare for him and in doing so met his new neurologist. She was honored to refer him for Make-A-Wish as his continued daily seizures put him at critical risk. We started to explore and travel in the camper he received as his wish and realized quickly how much work went into finding accessible locations. I thought if more families knew how many places truly were wheelchair friendly more kids like Robbie could travel and get outdoors. This was the start of Accessible Adventures and us sharing Robbie’s story.
AJ: Can you share an example of an obstacle you’ve encountered while traveling, how it worked out and what you learned from that?
KC: Traveling with a disabled child means packing equipment and medical supplies. So many medical supplies. On one of our RV trips this year we each thought the other parent grabbed the additional packs of diapers and surprise–no one did. We were on day 3 of a 12-day trip when we noticed we had about half of the diapers we needed. We rerouted to find a bigger chain store, spent more money than I would like to admit on pullups and realized we needed to change the way we pack! From that trip on we created a list and now both of us check off all supplies to avoid any miscommunications.
AJ: If there was one thing you wish someone would have told you at the start of this journey, what would it be?
KC: I truly wish someone would have told me that even if my child didn’t hit those milestones, he didn’t walk or talk, he could have a happy life full of adventure. I was so stuck on what he couldn’t do that I was blinded to what we could do together. So much of the world is accessible to wheelchairs, and he can fully communicate in his own unique way when he is enjoying himself.
AJ: What advice would you give to parents who feel trapped at home, or don’t know where to start?
KC: If you aren’t sure where to start with getting your child outside or traveling, start small! Stay close enough for a trip home for anything you may forget. Look at accessible travel blogs for areas you want to explore. Have the equipment you need, a stroller/wheelchair, child carrier, or big play yard for breaks. Most of all, stay flexible!
AJ: Are there any tools or resources that you use that would help other parents who would like to travel with their child with a disability?
KC: We have a blog on Accessibleadventures.net where we map out specific areas we visit and accessible things to do on that trip. Our Instagram @accessible.adventures also has highlights organized by state and each reel or post is geotagged so you know the exact location. Follow us as we continue to share tips and locations!
. . . We realized we needed a new plan.
I was so stuck on what he couldn’t do that I was blinded to what we could do together.