I am a parent of a child born with Fragile X Syndrome. My son has challenges in all aspects of his life, and easily becomes overwhelmed by his environment. That can lead to difficulty with communication and the dreaded behavioral meltdown. He was born with Disney loving parents who are determined to make our Disney trips a consistent part of our lives. Are we nuts? Perhaps. I tend to think of my family as goal oriented, determined, hopeful, persistent and perhaps, at times, incredibly brave. We were blessed with 2 additional “typically developing” children. We CHOOSE to live as “typical” of a family life as we possibly can.
Why would we knowingly bring a child who has such strong sensory (especially auditory) processing challenges to an environment with an overwhelming amount of input? As I mentioned above, when we became engaged at Walt Disney World, and my fiance’ (husband now) and I discussed our vision of our lives, trips to Disney Destinations was near the top of our list. Having a child with an overwhelming diagnosis, we easily could have said, lets put all of our resources and time into therapy and education. We could have stayed home where everything was controlled and familiar, but that isn’t real life. Life is full of unpredictability, as we learned when our son was diagnosed with Fragile X. It is overwhelming at times. It is also incredibly joyful, full of laughter and wonder. We are so privileged to live where possibilities are endless and we have a choice to pursue our dreams. After our initial shock and adjustment to a “diagnosis”, we CHOSE to continue on with our lives as we had planned!
While pregnant with our son, we had made a plan to visit Walt Disney World with him when he was 9 months old. We had talked about how exciting it would be to see the parks through the eyes of our child. Hokey? Maybe, but that was what we had planned. We loved being there with our son. We were “typical” that week. No therapy, no worries about his future. We lived in, and enjoyed the moment! It was a much needed break from our reality!We planned another trip when he was 15 months old. We were still navigating his diagnosis and immersing ourselves in learning how to help him in every way we possibly could. We looked forward to our trip because it was our relief, our motivation. While on that trip, our son certainly showed more challenges with being overwhelmed by his environment. Our expectations had to be adjusted on how we would navigate our time in the park. Arriving early and leaving to make sure we kept his nap routine. Frustrating at times, that we couldn’t follow our idealistic plan. Then the magic happened. Our speech delayed, minimally verbal child started to try and talk. He was trying to communicate what he wanted. His reaction to the monorail was priceless. We sat inside of Epcot just waiting for the next monorail to come through just to hear him excitedly try to communicate, as it would pass by! We were hooked! We are “lifers” now.
I plan to share our strategies that we have been forced to develop. Not all of our moments have been joyful, but we are persistent. My goal in sharing these experiences is to help families with a “diagnosis” be hopeful that a trip to Disney can be a reality! Stay tuned to read more about our lessons learned!