Adventures of Luke - Tornado Chasing

By: Daniel O’Neil

Chasing a Tornado?

Like most parents, Carolle and I have always encouraged our children to chase their dreams. When our neurotypical girls were young, they had the usual fantasies and dreams. My favorite was when one of my daughters put on her Christmas list that she wanted “a magical wand that really does magic.” As they grew older, their dreams matured and now the wannabe wizard is now happy to be a nurse.

Our son with DRYK1A, Luke, has always held on to his dreams much longer. When he was 12, we finally sat him down and told him that Santa wasn’t real. It took two years until he believed us. For the longest time, he desperately wanted to transform into a mermaid. He is quite good on the internet and was able to find websites and videos that explained exactly how to do it. We never figured out how to help him with that dream.

A few years ago, he became quite interested in tornados and extreme weather events. He saw a role for himself spreading the news of disasters and helping people to prepare. Almost a year and a half ago, he made his first video and has gone on to make over 150 videos on weather! There is a huge improvement from his first video to his more recent ones. We really think that making videos has helped improve his focus and his articulation.

His favorite weather YouTubers don’t just make videos about weather forecasts, they also are out in the field watching the storms. This became Luke’s dream—to actually see a tornado. Carolle and I looked into it and found that there are tour companies that take people storm chasing. Last year, for Luke’s 18th birthday, we booked a week of storm chasing. We figured that if we couldn’t help him become a mermaid, then at least we could help him to live out this dream!

Our storm chasing week was June 20-27 (unfortunately causing us to miss the Colorado meet-up). We knew that no matter what happened, Luke would have a great time. It was a chance to spend a week riding around in a van with a bunch of other weather nerds. Luke has a quirky personality and we knew that as people got to know him, they would accept his quirks. The week was a lot of time riding in a van, sleeping in cheap hotels, and eating in restaurants. We saw a nice storm on the first day and then nothing. Our van broke down and we ended up two nights in our least favorite of the hotels. The week was starting to look like a bust.

Then on the fourth day we had our storm. We drove a total of six hundred miles that day but we ended up exactly in the right spot at the right time. We saw a massive cloud formation that storm chasers call a “Mother Ship” because it looks like a gigantic spaceship. Then a massive tornado touched down! We were far from any towns and it didn’t hit any structures so we could just admire the strength of it. Luke was beyond thrilled. The video that we put together on the chase has become one of his most watched videos.

Raising our kids is tough. There is so much worry about how best to help them, how things will work out, and how to pay for it all. But there are also these moments of unbridled joy. Thinking back on that day still brings tears to my eyes. Luke was able to live his dream and he couldn’t have been happier.

Just as a side note, Luke is very proud of his YouTube channel and checks the number of subscribers daily. Luke would be very happy if you were to click the subscribe button on one of his videos.

Dad Reflects on His Son Luke's 18th Birthday as He Lives with DYRK1A

Author: Daniel O’Neil

Luke-camp.jpg

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.