If you randomly met me on the street, you’d never know I was the mother of a son with autism. You see, my son, Kyle, is a grown adult. He’s living and working on his own, with very minimal assistance, pretty much independently. He loves what he’s doing and is passionate about his work, his studies, his hobbies and his friends. He’s successful, too. Amazingly, all of these things are blended beautifully in his life today.
Now, if you would have asked me twenty-two years ago if I thought Kyle would be living on his own as an adult, my answer would have been “no.” It really makes me feel awful to admit that right now, but I remember feeling overwhelmed and unsure about his future. He was a young child labeled with a developmental disorder that we only could associate with the movie RAINMAN. That was a lot to handle, the very thought of it made me cry often and it all certainly put a big question mark on what he could achieve in his life.
Kyle was diagnosed with moderate to severe autism on his 3rd birthday. Not exactly the ideal present we had hoped for. We went ahead and continued our plans for the evening, having a small party for a few close friends and family members. We didn’t let anything stop us from celebrating Kyle and enjoying the moment. Even though he seemed uninterested, we still followed through with our day, just as if we had never heard the word “autism.” We did that each and every day from that day forward, and have not stopped doing things that way ever since.
Despite his reactions, or lack of reactions, with each experience we just kept on doing things, without excuses. From that very first day, this is how we lived with this autism thing – never letting it hold us back – never letting it get in the way. I only need to look at all the pictures I took to be reminded of what I know deep in my heart: we raised both of our boys with love, laughter and consistency. That’s not to say the road was always easy. There were several times I thought we just would never make it.
I’m not going to write about all Kyle’s symptoms and behaviors but I can tell you about a few. He had many sensory issues (clothing and food texture issues, sensitive to noise) and also enjoyed rocking back and forth on the floor. He could not put two words together at the age of three, yet he could read sentences and repeat back TV commercials verbatim (plus, sing the cute jingles perfectly)! He lined up Hot Wheels cars all over the house, but had no idea how to roll them on the tracks, nor did he try or care to (even when we showed him how fun it was to watch them go fast). When we traveled in our car, he screamed like a maniac if we turned right instead of left, or left instead of right, depending on the intersection. I think you get the idea.
Kyle didn’t put two words together until close to age four. He wasn’t completely potty trained until close to age five. His outbursts due to frustration were numerous. Each day certainly had its challenges. I think it is important to note that we also had another son three years older than Kyle who had ADHD. Yes, there were days I cried. I thought I couldn’t take it any longer. I would ask God, “Why? Why would you give me these two challenging boys?” Then I would remember the saying about how God never gives you more than you can handle. So, that would make me giggle to myself. Honestly, it was a sense of humor that helped us get through all those early years of parenting. We took every situation and tried to find something funny to help lighten the load. This is still how we handle things today, actually! Laughter and autism…yes, that combination really helped ease things on the bad days. Lots of laughter, we did have a good dose of that. We still do, too.
Make no mistake…we also got professional help, and lots of it! We went to family counseling and got parent training. Even our boys went to therapeutic play groups and summer camps for years. That’s how we all learned the consistency thing. Time out became as involuntary as breathing. Yet, even through the toughest of times, we were able to keep smiling. I don’t think it’s any coincidence that the very first thing Kyle was able to draw was a smiley face. That’s a testament to the way his life began, the way he continues to live today. Despite the challenges, he’s continued on (with our support) and remained happy.
We discovered that Kyle was gifted in music when he was five years old. Frankly, that is what got him through 12 years of school. We started him in piano lessons to help with his dexterity. It was just that simple. I thought of it as a therapeutic tool.
Kyle had trouble holding a pencil or crayon correctly, so therapists suggested occupational therapy. We noticed that his computer keyboarding skills were developing well at a very young age, which was another task that helped to build his fine motor skills, we thought, he found handwriting too difficult. About the same time, we noticed he loved playing with the electronic keyboards at Best Buy. That, and he also hummed tunes quite a bit, especially familiar ones from TV shows, cartoons and especially his brother’s video games. It made sense to us that piano lessons could help strengthen his hands, since it involved the fingers and since he seemed to really enjoy music, he’d feel more at home doing it as opposed to some other therapy. We were indeed going down the right path when we chose the piano lessons. His teacher discovered he had perfect pitch by his second lesson (yes, at age 5). By his senior year, Kyle made first chair percussionist in All-City Band. He even received a music scholarship from University of Texas at Arlington in addition to other scholarships to help him with his post-high school education.
Unfortunately, college was less structured than high school, so this became a struggle and he had a hard time keeping up with the demands. We decided after one year of college, it was time for him to try working full time. He had held a part time grocery store position as a sacker in high school, so we thought he could turn it into a career. He could work hard and advance. But, working full time became a real challenge for Kyle. It was hard dealing with different people, longer hours surrounded by constantly changing personalities and comments. This made his days more and more uncomfortable. His escape was to come home and play his video games all day. This became the routine and how he managed his stress somewhat. You can imagine our reaction to this, however. I must say, we found it harder to find the humor in his behavior at age 21 than we did when he was younger! We were frustrated and so was he. What would his future be now? He was having a hard time keeping a job, an even harder time finding a new one when he did get fired, his self -esteem was getting lower and video games seemed like the only thing that brought him pleasure.
So, to help him understand his struggles, and to help us learn some strategies, we decided to attend a Future Horizons autism conference in the summer of 2009. While there, during one of our breaks, we were approached by another attendee and learned about a new non-profit organization that was forming. After the conference ended for the day, we met briefly with one of the gentlemen who was starting nonPareil Institute in Plano, Texas. As he told us about his vision and plan for the company, we sat there amazed. We could not believe what we were hearing; nonPareil Institute was to become a non-profit video game development company, a technology training program for adults with autism, where they would train, work and eventually live on a campus. They needed to find a few initial students they could attempt to train, to see if indeed this vision was something viable. We left that meeting and drove back to Arlington. It sounded like a dream to Kyle, and it definitely fit him perfectly. Could this actually be something that could grow and become a reality? Should we take the chance and let him become the FIRST student? Well, the answer to both of those questions is YES!
Today, almost 5 years later, nonPareil has grown to training about 140 individuals. My son, who started there alone, is now a full time instructor, teaching many other autistic adults video game design and programming. The company itself has been featured on both local and national news, most recently on NBC and CNN, plus an article just appeared in Family Circle magazine. Last year, there was a VERY successful KICKSTARTER project to raise funding for the full length documentary about this inspiring company. It is called Programming Hope, and it’s expected release date is within the next year. Go ahead and start sharing the news and pass this blog post on to those you know who need to hear this…every share would certainly go a long way in helping everyone become aware of how life can and WILL be for adults on the spectrum. The movie will be amazing. My family, our son and others like us will also be featured, as well as the story of the company’s founders, Dan Selec and Gary Moore. We couldn’t be more proud of nonPareil Institute and our son!
We are certainly glad that we attended the autism conference that day, but Kyle’s journey is not the only reason! There’s more to my story!
A few months prior to attending that conference, I had started my own personal journey. I was turning an active passion and hobby of mine into a business. I created my own company, aRoundJoy, where I began teaching hoop fitness to adults at my warehouse studio, The HoopShack, in Arlington, Texas. As I began to teach & share more about hooping with others, I discovered it was helping not only myself, but so many other types of individuals, on multiple levels. There was so much more about this circular movement than simply one could see. As someone with some firsthand experience dealing with autism, one connection spoke loud and clear to me: parents, teachers, therapists and even autistic individuals themselves can benefit from hooping! The hoop can be so calming and relaxing, it reduces stress, plus generates joy and laughter, too! It is definitely repetitious, and the spinning is a great way to get a child to engage with you. Hooping can be done in groups, but it is a GREAT individual activity, providing a physical release & wonderful physical exercise. It’s a nice way to get in more movement each day for overall well-being, but in a really fun & positive way. It’s not just boring exercise! Bottom line, hooping makes people happy, and we all can use some of that!
As I sat in the front row at the autism conference that day, on the very same day we learned about nonPareil Institute, all these thoughts began to swirl in my head about how the hoop could help the autism community! I began to imagine larger events where I could share this information with everyone. I would work on that, I thought. I would grow my business and make connections in my local area, so that someday I could find a place to bring hoop awareness to more people in one place. Since that conference day, over the last four years, I also have grown my company and have hosted events for autism awareness. My son and I have given talks to parent groups at schools. I have made invaluable connections in my local community, and hope to work with even more non-profits in the future, allowing me to help show others how the hoop can help their families. For some it’s about weight loss & getting active, but for many, it simply is a way to “connect” and “engage” in a playful way.
The more people I meet and teach, the more I connect with individuals and families who know all too well about autism. I am able to share with them my story. I am able to help them with some advice, some tips, some tools to help them cope or just listen and understand. All this developed over time. I didn’t start hooping or even my business, for that matter, with these goals in mind. Everything has simply evolved that way. My path has been open, and I have allowed it to roam where I am needed and wanted. Good things are on the horizon for the future.
I know my purpose…now…my “why”…my “why me”…God always gets it right.
AROUND JOY…yes, I truly am.