staying in a hotel independently, and forgot his travel alarm clock shaker. He missed his return flight, because he had nothing to get him up on time. No matter where we go, a processor can get lost. We have spent hours searching in children’s play areas, fields, parks, driveways, cars, beaches, and once even a sewer drain! My husband is an expert “finder” at this point, but there are times when it's not possible. For instance, when a processor is blown off your child’s head into a lake or falls out of your child’s hand into the crashing waves, even my husband cannot find it. My brother-in-law even found a diver to search for the processor in the lake, but to no avail. There was no point in even trying to find it in the ocean.
SAVVY TRAVELERS: (Above left) Ethan gets ready to board his train to Baltimore in 2019; (Above right) Ethan and Gavin at Rochester Airport, about to fly home for Thanksgiving 2022.
Planes, Trains and Automobiles
Ethan and Gavin are in college now, so our family road trips are not as frequent. Recently we had to go to Boston for their appointments at Mass Eye and Ear, so we decided to make it a long weekend and take the opportunity to check out the city. I am happy to say that I was not involved in their packing Though old habits die hard, so there may have been a few reminders (and I was the one who brought the outlet extender). They are already confident travelers, used to any type of transportation, and comfortable staying in different environments. I am certain that we have given them the tools they need to be prepared. They have flown independently and are comfortable using preboarding, because they are able to get to their seats with fewer people around them. We have taught them to talk to the flight attendants and let them know that they are deafblind, and that it is necessary to touch their arm to get their attention. They have been on a cruise and understand that
planning and organization is key. For trains, they need to be aware of the time and number of stops, because they might not hear the announcements. They embrace opportunities and recently have traveled abroad, This comes with the added challenge of needing an adapter (depending on the country) for charging their cochlear implants.
As Parents
As parents, we want to show our children as much of the world as we can. Dealing with a disability should not stop that. It makes it more challenging, even quite frustrating at times, but we all need what family vacations give us. It is a time to make memories
and bond over shared experiences. It provides memories we can look back on, when our children are older. As any parent of child with a disability has learned, we need to be planners, we need to be well organized and structured in our day to day lives and to always expect the unexpected. That is even more important when we travel, so all can go as smoothly as possible. I have even learned to remember that I did the best I could, and try to be a little more forgiving of myself when things go wrong. I have learned over the years that a ‘go bag’ helps when planning travel. This has had many iterations over the years, but about 5 years ago, I finally settled on a large photo storage container with smaller photo boxes on the inside to help organize. I did not come up with this myself. I think I saw it in a Facebook group. I use one of them to store extra parts for travel, so we can just grab and go. As Ethan and Gavin got older, it was important to transition to them grabbing and packing the extra parts on