15October

Jack's Story

Jack's Story
They Don’t Come With a User’s Manual
Autism from a Parent’s Perspective
By Perry Noble

It seems like a lifetime ago when little Jack bounced and bounded out the doors for the last time at 2695 Jersey Street, known to those in the “family” simply as Firefly. My original story on Jack was a focus on how we struggled before we found Firefly and explained Jack in terms of where we had been until then, and how Firefly helped us find hope again.

As a parent with a newly diagnosed child with autism, so many things race through your mind. Everyday tasks become hurdles to overcome. A trip to the store can be a major ordeal, a meal in a restaurant becomes only a dream. Life is reset and perspectives change. With every success comes a new objective or obstacle to overcome.

Jack continues to surprise us all. I’ve always been a “glass half full” kind of person but I’ve learned something from Jack: that idiom is a falsehood. Why do we not consider a glass three quarters full? The trap in the glass half full is that the expectation is set low.

I can remember times with Jack where I thought, “if he could just… I’d be happy.” I never considered it from his perspective. He didn’t want to “just get by”, he wanted to succeed. There are so many things I put in my head that I thought would be beyond Jack’s ability, some of them small, some very complex. I’ve learned the hard way to stop setting those boundaries and have replaced them with, let’s try it and see what happens.

There are many things Jack had issues with that took a lot of effort to overcome. Going to a movie in a theater was a trial and error experience. There were times we bought tickets and never made it as far as the seats. Jack would freeze at the sight of the dark entrance but each time we would encourage him to take one step farther than last time. I’m certain we helped box office ratings for films we never saw. Then we discovered something that never occurred to us before: incentive.

Some would call it a bribe. If you think about it, a job is nothing more than a contractual bribe. If you come to work and do what we ask, we’ll give you money. With Jack things worked similarly. Jack understood the concept of reason at a very early age. So we would find something that he really wanted to do, like visit the Colorado train museum in Golden. We would strike a deal. If he would come to a movie, then we would go to the museum. It was like magic. It worked! Risk, reward, a simple concept that all of us take for granted every day.

Once we discovered what worked with Jack we started exposing him to anything we could. Jack took lessons in Brazilian Jiu-jitsu, he learned to swim, he was in Cub-Scouts. He writes stories about fictional characters he’s seen in cartoons or video games and so many other things we just never thought possible. Fast forward ten years and Jack is nearly 14. He attends public middle school with support and is doing well in many of his classes. He still struggles with abstract ideas, but then at times, so do I. He was placed in two elective classes which we thought would be disasters but as it turns out, he loves French and Drama. Who knew? He loves to travel and handles it well, better than most actually. He never gets bored or complains. He happily endured a six day (one way) road trip to Anchorage, Alaska with nothing but the scenery and his dog in the back seat (no electronics) for entertainment. The return trip was ten days and he weathered that just as happily.

Today Jack is a happy young man who takes life one day at a time. He enjoys school. He plays soccer on Mesa Middle School’s unified sports program, and recently trained for and completed his first 5k race through the Douglas County Adaptive Recreation Program. His next endeavor will be playing basketball on the Mesa unified team and at 5’ 8” in 8th grade I’m eager to see if he likes it!

Jack would not be the amazing young man he is today without the early diagnosis and subsequent early intervention treatment he received at Firefly. Those foundational building blocks that Jack was given and that we adopted have been the guide to “drawing out” the funny, complex, loving young man that Jack has become.

A diagnosis of autism is not the defining moment; it’s what you do with that information afterword. If there is one thing I could pass along from this journey it’s “never give up” keep trying. I spent countless hours on the floor with Jack when he was a toddler playing with Thomas the Tank Engine trains just to make eye contact. Parts of the journey are not pretty. It’s not easy. There are no short-cuts. Firefly has been a huge help. As parents we are not given a user’s manual when our children are born and if we were, it probably wouldn’t have a chapter on autism. The staff at Firefly helped not only Jack, but our whole family. We learned right along with Jack and built a plan and strategies and goals. Most of those goals Jack has far surpassed, while some are still on the horizon. Having something to strive toward is something we all need in life. Firefly helped us set up those goals and put us on the right path to reaching them.

This update is about Jack’s journey but I want to emphasize that the journey would look very different without Firefly. There is no cure for autism and the debates over its cause will continue for a long time. Firefly doesn’t focus on either. Their focus is how we can improve the quality of life for those impacted by autism. I say “impacted by” because it is not just the child with autism who is impacted. It is the whole family.

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