In my intro to this series last week I pointed out that some have said that raising children is like a marathon. And I think that the analogy is apt for the most part. It takes a tremendous amount of preparation, endurance, will and patience to run a marathon. The longest race I ever ran was 10 miles, and that felt 9 miles too long. Parenting is challenging in unique ways, and it takes a long time to get to the finish line, if that is even a thing. And when you do finish every last part of you feels spent.
Kind of like a marathon.
And if parenting is a marathon, then parenting a child with autism (or any disability) is an ultramarathon. It feels twice or three times (or more) as long as a regular marathon. There are all sorts of other obstacles in your way. Everything is turned up to 11 all the time.
And if parenting is a marathon, and parenting a special needs child is an ultramarathon, then parenting a child profoundly impacted by disability belongs to an even narrower subcategory of endurance competition. It is such an extreme experience, and is so unlike the experiences of most parents and families that it is almost like it is from another planet. The struggles feel so unique and so isolating that it is hard to even know how to describe some of them. All you can do, it seems, is just take the next step.
I love Willie more than anything else in the world. And parenting him has been way more than just a marathon.
In 1977, James Earl Ray was serving his 99 year sentence for the assassination of Dr. Martin Luther King, Jr. in the Brushy Mountain State Penitentiary, deep in the Appalachian Mountains of East Tennessee. In June of that year, Ray decided he was done with incarceration and launched an escape. Ray was on the run for about 54 hours, his progress stalled by breaks to avoid air searches and the unforgiving landscape of the surrounding area. In his 54 hours of running, in fact, Ray only made it 12 miles.
A young runner who lived in the area named Gary Cantrell (later nicknamed Lazarus Lake) laughed when he heard the distance Ray covered. "Hell," he thought, "I could have done 100 miles."
It was in that moment that the idea for the Barkley Marathons was born.
A few years later, Cantrell (Lazarus) and his friend Karl Henn came up with the idea for an ultramarathon to be held in Frozen Head State Park, not that far from the Brushy Mountain prison.
The rules of the race were, on the surface, simple. It was 100 mile race over 5 days. Each day would consist of one 20 mile lap. The total time given to complete the race is 60 hours. If you complete 3 of the 5 laps (60 miles) in 40 hours, you get credit for having completed the "fun run."
100 miles in 60 hours. That's 1.67 miles per hour. It seems challenging to be sure, but it's doable right? I mean especially for elite endurance athletes, the race sounds - on paper at least - to be imminently doable.
And yet the overwhelming majority of the people who enter the Barkley never complete it. In fact, since 1995 only 15 (fifteen!) runners have finished the race. Most years no one finishes. Only a handful of years has more than one runner finished. Only two runners ever have been able to finish at least two Barkleys. There hasn't been a finisher since 2017.
It is a race that everyone should finish and almost no one does.
And that is because the race is about way more than just time and distance.
Only 35 runners a year are allowed to enter the Barkley. Application details and requirements are subject to change and they're also a secret. In order to even complete an application you have to know a guy who knows a guy. Then you have to send in a $1.60 application fee, along with an essay explaining why you wish to enter, and hope for the best. If you are lucky enough to receive a "letter of condolence" inviting you to the race, you have to bring a license plate from your state (another entrance requirement) and head to Tennessee. There is no set time for the start of the race. At some point between midnight and noon on race day, race inventor and organizer Cantrell lights a cigarette. That cigarette is the starting gun.
And all that is before the race even starts.
When it does start, the runners must traverse a 20 mile loop that has no markings and no aid stations. There are two water points along the way, but only two. There is no electronic tracking or timing. Along the course there are a series of books, and each runner has to pull out the page that corresponds with their race number to show that they have completed the loop.
The course itself meanders through some of the roughest country in the south. There are sudden drops, rocky terrain, and thick brush. The race course normally has somewhere around 10,000 feet of vertical climb for each loop, meaning that over the 5 loops a finishing runner will have climbed Mount Everest. Twice.
I think that Gary Cantrell may have described the Barkley best. Every ultramarathon, he said, has that one "signature" hill - that one place that separates finishers, the one obstacle that runners know that they will have to overcome. The Barkley, he has said, is all of those hills together, one right after another.
Willie was first diagnosed with developmental delay at 15 months old. By 18 months old, he was in intervention therapy. At two years, three months, and five days, he was diagnosed with autism.
At age three he had an Individualized Family Services Plan (IFSP) - essentially a preschool IEP. Due to Barb's relentless and capable advocacy Willie was the first child ever to get a full day placement in DoD preschool at Fort Bragg. He had an IEP from the moment he started kindergarten.
Over the years Willie has had speech therapy, occupational therapy, physical therapy, sensory integration therapy, and behavioral therapy. He has used the TEACCH model, attended social skills groups, and he's done floor time and read social stories. He has tried augmented communication devices, picture schedules, and had his day broken into 15 minute increments.
He has eaten gluten free diets, casein free diets, and has also eaten what felt like a Fruit Loops only diet. He has had a one on one dedicated person, be it parent, sibling, teacher, therapist, or professional caregiver, within arms reach, caring for him, for practically every single moment of his entire 23 (almost 24 year) journey on the earth.
He has gone to Camp Royall and vocational centers and been in self-contained classrooms. He has done horseback therapy and pet therapy and he has participated in numerous drug trials. He has been to the beach and the pool.
We have gone broke caring for Willie. And I don't mean that figuratively. I mean it quite literally.
We said goodbye to Willie when he was not quite 12 years old. That's when he left for the Partners in Autism Treatment and Habilitation program at the Murdoch Developmental Center in Butner.
12 years old. And we had to send him to live with someone else because we had reached the limits of what we could do for him. And because he wasn't getting any better.
And that's the hard part. He has never gotten better. At 23 Willie doesn't talk. He never has. He still needs a massive amount of assistance for even the most basic tasks. He can feed himself, but not cut his own food or pour his own drink. He can get in the shower but not turn it on. He can put on his own shoes, but only if they are slip-ons.
He gets frustrated. When he gets frustrated he gets angry. And when he gets angry he gets violent. That was a problem when he was 12. Now he is 5-10, weighs 190 pounds, and is incredibly strong. He punches himself so hard that he has permanent calcium deposits on his jaw. His face is often swollen, misshapen and bruised. He pinches. He pulls on your arms so hard you think that you have dislocated something. He will squeeze your hands to the point you think they are broken.
Willie used to smile and laugh. He has a truly magical smile. And his laugh is so light and so cute that it can't help but make you laugh. Willie can light up a whole room with his joy.
I don't remember the last time he smiled when we visited. Or the last time I heard him laugh. Every time we go now it feels like anger and disappointment.
Parenting is a marathon. Special needs parenting is an ultramarathon.
It's the Barkley Marathons.
There are lots of reasons the Barkley is so tough. But I think Lazarus' description of the race as all the worst hills of all the other races put together in a role is probably the main thing that makes it stand out as a uniquely grueling experience.
Every kid with autism has a challenging day occasionally. Heck, every KID has an occasional bad day. Some even have them a lot.
What makes parenting a child with profound special needs so hard is that EVERY day is a challenging day. And I mean every, single, solitary day. That doesn't mean that every day is bad. It doesn't mean every day is devoid of joy. What it means is that every day is hard.
When you parent a kid like Willie you don't really sleep. When they fall asleep (and most kids with severe autism need medication to do that), you spend hours cleaning up all that got screwed up during the day, or doing all the things you didn't get to. The half-finished projects. The emails and texts you didn't answer. That bill you forgot to pay. Then you lay down to rest only to hear noises coming from their room because they are up again. It's 3AM you think. I guess it's time to start the coffee.
There are no breaks. There is never a moment off. I used to get irrationally angry at parents who could come to the park and sit while their kids played. That is not a thing when you have a kid like Willie. It feels like you never get to sit.
All this is not to say that there isn't joy raising a child like Willie. He has had moments where he has propelled joy in our family, when he has been the engine of bliss. Some of our best collective moments have been with Willie.
And I hold on to those moments. Desperately.
The last family picture we took with everyone in it was a visit to see Willie "graduate" from school in 2019. The school in Iredell County that he attended threw a wonderful party and we were all there. It was such a special moment. And like so many special moments, you don't realize how special it was.
Running the Barkley takes a special kind of runner. Raising a profoundly autistic child takes a special kind of parent. I have met the most amazing people on this journey, moms and dads and grandparents and siblings who do anything and everything to give their people the very best life they can.
One of the things that makes the Barkley work is the support from race volunteers. They work hard to create a meaningful experience, working long hours for no pay. Willie has been supported by caregivers for years. CAP workers, group home workers, the staff at Murdoch. These people work their ass off supporting the most vulnerable among us. They change adult diapers and help people like Willie bathe and eat and go to "work" at the vocational center. They are the ones who tuck him into bed. They are the ones there to say good morning, and get hugs. And they do it all for $11 an hour.
Through all this I remember one thing: as hard as it is to be a parent of a child profoundly impacted by autism, it is a hell of a lot harder to be the person impacted. To be trapped forever in a brain with wires scrambled and disconnected. I can't imagine how frustrated I would be. Willie is positively restrained compared to how I would be.
In the end people run the Barkley because they love it. There are a hundred reasons why, and each runner has their own. They run because the race is there. And that's enough.
I will care for Willie in every way I can until I no longer can. And I weep for that day because I don't know what will be next for him.
I will care for Willie because he is my son, and because I love him, and because I know no other way to be a father. I just try and do it all the way all the time. That means I make a ton of mistakes. But I never, ever stop trying. And so I will love Willie, always. And I will not quit until he does.
When a runner decides to drop from the Barkley, Taps is played. There is no Taps for parenting. You don't just drop out. You keep running.
One foot in front of the other. Focus on the small joys, and let them guide the way to more. Don't take anything personally. Fight like hell. Give until you have nothing left.
That's how you complete the Barkley.
And that is how you parent a child like Willie.
The sad truth is that some parents do drop out. Consciously or unconsciously. Give yourself credit for not dropping out, because it's not a guarantee all children enjoy.
Jim has been the taps player a couple years pre-COVID at the Barkley and told us stories so I have an idea about that race.
The comparisons click together perfectly.
We take wedding vows “til death do us part” that really we should take when we become a parent.