Niklas is a 19-year-old who exemplifies the spirit of love and happiness in all he does. While he was diagnosed at just 16 months with Fragile X, we have never let it define who he is, but merely offer insights into his world and how he experiences it.Looking back, probably the most difficult years were before his speech developed. He was extremely frustrated that he was unable to communicate his needs. Even with the support of Early Intervention, he did not begin to sign until age 2. We will never forget the turning point in our lives, when we realized how truly intelligent Niklas was, and how we, as his parents, had to re-train ourselves, to better understand how he thinks and perceives the world around him. Niklas used to have emotional outbursts when leaving our house and driving out of our neighborhood.
Being “typical” we were not bright enough to see there was a clear pattern to his meltdowns. After careful consideration and truly mapping out what we were doing, we discovered the pattern. Niklas only had a meltdown, which included banging his head against the window in the backseat of the car, when we made a right turn out of our neighborhood. Ironically, the only time we turned left was to see two people: his grandparents and his beloved babysitter. All right turns were uncertain and caused great confusion and anxiety for Niklas. With the support of ABA (applied behavioral analysis), OT (occupational) and PT (physical) therapists, we developed a system of communication that made sense to Niklas and allowed him to better understand what was going to happen. From that point forward, we began to train ourselves to see the world through Niklas’s eyes to allow us to better support his growth.
We haven’t looked back. From the day in the geneticist’s office when he candidly looked me in the eye to tell me, “Well, your son is mentally retarded. He has Fragile X Syndrome. It’s a genetic disorder that you gave him. He will likely need to be institutionalized. He may not walk, talk or potty train.” When I looked at him dumbfounded, and slightly numb to the blow he had just delivered, I merely asked, “Do you have a list of when children with Fragile X are expected to meet their milestones?” He responded nearly as dumbfounded as I had been a moment before saying, “Hmmm. Usually, people are crying by now. I don’t have a list.” If this was the best that I could hope for, I knew I had more searching to do. As a parent, it was my job to provide my son every opportunity possible to experience life in a manner that brought him joy and happiness.
Soon after, was when our journey began and our mission to finding a cure started to evolve. After connecting with Katie Clapp and Mike Tranfaglia, we were convinced as long as we were capable we would do what was needed to spread awareness and raise funds to find a cure. Now, after seventeen years after his diagnosis, Niklas has participated in two drug trials. We believe we saw improvements in his speech and his overall connectedness to himself and the world around him during these trials. We are eager to see the results from the recent research and hopes another trial is forthcoming.
After people have a chance to meet Niklas, a common theme emerges. “He is an amazing person!” He is often referred to as the “mayor” at a number of places. He would give Norm from Cheers a run for his money as he has several restaurants and clubs in the area with guests and employees who stop and shout “Hey! It’s Niklas!” as soon as he enters. Ron and I have become “Niklas’s mom and dad”, a title we couldn’t be prouder to have. Along this journey, not only have we learned more about who we are, how to be more open and accepting of others, but also we have learned unconditional love!