When Mom Crosses the Finish Line
When Mom Crosses the Finish Line
Raising a child with autism is very much like running a marathon. However, participation in my particular 26.2-mile event required even more endurance than the average “athlete” needs these days.
Don’t get me wrong. Every autism parent is running a marathon. The challenge and distance we face are the same. But when I crossed the start line, less runners were on my course. In the 1990s, when my son was diagnosed, autism was less prevalent. They actually didn’t even accurately track the statistics back then and began retroactively! But experts estimate autism occurred in about 1 in every 150 births. In 2018, the CDC reports 1 in 59 children have ASD. That’s a pretty significant increase!
Since the marathon I was registered for wasn’t such a popular event in the 90’s, my course had more potholes. Many more unanswered questions. Since there were fewer runners, there were also fewer spectators. My sidelines were not crowded with sign-wielding cheerleaders. It was lonely at times. There was also less support in the form of much-needed services compared to today. Conferences, therapies, and sensory friendly events are in abundance now. My course had less volunteers to hand out water, sports drinks, and snacks. The route also wasn’t as flashy. No one was “Lighting It Up Blue” in the 90’s.
With all these factors, miles 1-8 were quite bumpy for me. I felt like I wouldn’t reach the finish line. Actually, experts told me I wouldn’t reach the finish line. They told me all the things my son, Jack, wouldn’t be able to do. They predicted Jack wouldn’t be able to be meet the requirements necessary for a Bar Mitzvah. They told me he wouldn’t be able to live independently and that he would not be able to hold a job. Now he’s 24, he’s grown up, continually progressed, and proved each of these statements to be wrong. But, trust me, this wasn’t easy on me or him. Miles 12-20 were filled with a lot of trial and error. And A LOT of searching for needed therapists, tutors, job coaches, and other professionals.
Now I’m at a confusing place in the marathon: I’m at mile 26. I can see the finish line. Only two tenths of a mile are left. Jack is an adult. He lives by himself and has a job. He’s moving back to New York soon to spend time with his father and I’m faced with a “typical” parent problem: Empty Nest Syndrome (Or, I guess in my case Empty State Syndrome?). Now I find myself wondering just what the medal means to me. For so long, I’ve dreamed of crossing the finish line. For so long, my whole life has revolved around research, therapies, and fighting the good fight. The funny thing is, I’m afraid to reach the end of the race. Yes, I’m sore and exhausted and, in some ways, I’m grateful to be finished. But I’m left asking the question: What now?
It wasn’t my idea to register to run this event. But much of my struggle as an autism parent is over as my child enters adulthood with many independent and functional skills. After a race, most runners wait until the pain fades away and any injuries heal. Then they sign up for their next event and training begins. I guess I’ll have to take some post-race recovery time to figure out what event to register for next.
Adriene Fern MSE, CPM, has a multifaceted background, as a special education teacher, case manager, advocate, and certified peer mentor with the Christopher Reeve Foundation. She is also life coach and mother of two.
- Early Intervention: First Steps in the Right Direction
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs
- Advocating: What You Need to Know to Become a Better Advocate
- Empowering Your Child’s Best Advocate: You
- Developing Your Own Network
- How Do You Talk to Your Child About Their Diagnosis?
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This post originally appeared on our July/August 2018 Magazine