Author: Daniel O’Neil
Our son with DYRK1A recently turned 18 - a new phase in his life and a new set of challenges.
Like with Amarinsk’s brother, Luke didn’t get a diagnosis early in life. We went from specialist to specialist trying to figure out what made Luke different. We had a disjointed list of symptoms with nothing tying it together. When he was around two, a neurologist told us, “I don’t know what he has, but it isn’t degenerative. The more that you can do for your son, the better chance he has of living a full life.” Getting this news was both a wonderful blessing but also a terrible curse. Now anytime that we were not working with Luke, it felt like we were depriving him of having that full life.
When Luke started elementary school, he could only say a few words. Because he didn’t talk, people assumed he didn’t understand. We constantly fought to avoid having people underestimate Luke’s abilities. We focused long and hard on trying to get Luke to read and write. By the time he reached fifth grade, we finally gave up. That was painful.
By the time Luke reached high school, we finally had the DRYK1A diagnosis and Luke had finally started talking. His sisters give themselves credit for getting Luke talking. It clearly had much more to do with his desire to talk to others (especially girls!) than any of the therapies that we had tried.
We had also come to understand Luke and his strengths and weaknesses. We had given up on our dreams that he would grow out of his issues and come to accept his limitations. Like what Trotter wrote, our son lights up our day. He is funny, happy, engaging, and passionate about his interests.
The scary thing about having a child with special needs is the fear of the future. Luke dreams of being a meteorologist (and has his own video channel!) but he reads at the second grade level. He loves talking, but his diction is not very clear. Luke loves people but doesn’t really have any friends besides his family.
Luke has two older sisters who are wonderful people and have bright futures. My wife and I look forward to seeing them grow in their careers and to start their own families. As Luke enters adulthood, we fervently hope the same for him.