This is the second installment of a 2 part series that began last week. Read more about the series here.

Parenting a child with profound autism (or any acute disability or illness) is unpredictable, exhausting and challenging. As I explained last week, it is like every “worst” challenge laid out end to end. It leaves you feeling worn out and weak. You feel lucky just to be on the trail, much less finish.

Parenting a child like Justin is different from parenting Willie. Justin isn’t likely to assault us, although he has thrown some things and his fits can be intense. He’s also 6, so even if he did decide to take out his anger physically, I am not terribly worried.

Unlike Willie, Justin can talk. Believe me, he can talk. And he doesn’t just talk about space (although that is always his favorite topic). He is capable of discussing his feelings, and he can tell us - when calm - what made him get upset. He is social and outgoing. He loves to laugh and smile. He is hilarious and honest and is capable of being very very kind.

And he has autism. And that means that for all the things he can do, there are some things he can’t do. He can’t easily adjust to change. He doesn’t like loud noises or surprises. He will tell you that he “likes things to be the way I want them to be.” He is honest, to a fault. He will happily tell me that I am “too big” and “too old.” 

He is also brilliant. And I don’t mean Lake Wobegon “above average.” I don’t mean bright. I mean that Justin is capable of seeing connections that the adults around him don’t. He is capable of recalling distant facts and synthesizing information in new ways. He sees the world in a way that not many people do. His brain works in ways both prodigious and a bit scary.

Autism does not come with an off switch. Neither does being smart.

If parenting is a marathon, then parenting a child with autism (or any other chronic disability) is an ultramarathon. And if parenting a child with autism is an ultramarathon, then parenting a child with high functioning autism (and I really don’t like that term) belongs to an even narrower subcategory of endurance competition. It is so unlike the experiences of most parents and families that it is almost like it is from another planet. 

I love Justin. And parenting him often feels like way more than a marathon.

The Marathon des Sables (the marathon of sands) is held every year in Morocco. The race consists of the equivalent of 6 full length marathons over 7 days - a combined distance of 156 miles. The race has 6 stages varying in distance from 21km (13 miles) to 82km (51 miles). There are no aid or water stations on the course. Runners are expected to carry everything they might need in their backpack, along with required items. 

There are some climbs on the course, but they are minimal (especially when compared to the Barkley). The course is mostly flat. It is, however, covered in Sarahan sand and rock. That sand becomes like sandpaper in the desert wind, which can howl relentlessly. 

At the end of each stage, runners have the night to rest, treat blisters and other injuries, repack gear, and generally prepare for the next day. 

The race is challenging. It has been called the “toughest footrace in the world.” The Marathon des Sables is a world class pain fest. And there is one element of the race that makes it so monumentally painful.

The heat.

Run in April of each year, most of the race is run in temperatures in excess of 50°C. That is over 120°F. 

I don’t know if you have ever been in temperatures that hot, but I have been. I have spent more time than I would have liked in 120° heat. And I can attest that 120° is best described as “oppressive.” 

At 120° you don’t sweat. The temperature is so high that sweat literally evaporates when it reaches the surface. That means that your body’s best natural source of cooling is rendered moot. Heat injury is a constant threat. It starts with painful cramps and intense spasming. Nausea, fatigue and weakness comes next. At the final stage, confusion, seizures and even death are possible.

The heat is no joke.

And there is no escape from it either. It surrounds you like you are in a literal oven. In the desert there is no shade and the heat would still find you even if you were under shade. 

Sometimes, the only way out is through. Get through the day. Get to night, when there is some relief from the sun and the heat and the constant threat that something could get worse. 

The Marathon des Sables requires an almost sadistic level of dedication.

Autism (according to the DSM-5) is characterized by “persistent deficits in social communication and social interaction across multiple contexts.” Individuals with autism can struggle with social and emotional connection, verbal and nonverbal communication, and reciprocity of interaction (you speak, then I speak; you share, then I share). 

To put it in layman’s terms, those on the spectrum have an inability to “read the room.” In fact, they have the inability to read almost any social situation. It is important to remember that autism is a spectrum disorder, however. Some folks, like Willie, are profoundly impacted. Others, like Justin, are less so. There is a common tendency to call those who are less affected “high functioning.” While that may make sense when trying to establish relative severity, it is not an accurate descriptor.

It is like calling the Marathon des Sables an “easier” race than the Barkley because there aren’t as many vertical climbs or as much unpredictable weather. It’s not any easier. It’s just different.

So it is with raising a kid like Justin.

Just like the Marathon des Sables has its killer heat, parenting a child with autism comes with its own killer challenge - stress. Just like the desert heat pressing on all sides, stress comes in waves and from all directions. And there is no place to hide from it. 

With a neurotypical kid, you can be fairly certain that when you drop them off at daycare or school then you have the next several hours to do the things that you need to do - work, gym, errands. With a kid with autism you can never be sure. You have to have your phone on and ready. You can never fully settle into a routine because you don’t know when you will get a call saying your kid is having a fit and needs to be picked up. Playgrounds and pools require constant vigilance. You have to navigate a never ending series of systems and bureaucracies, each of which has unclear rules and expectations that you have to manage. 

All of this adds more and more stress.

And this is on top of the normal parent stress. Will my kid make friends? Will they not feel overwhelmed? Only autism adds stuff like “will anyone BE his friend?” Justin’s honesty is refreshing and sometimes funny as an adult. But sometimes the things he says strikes other kids as needlessly cruel. He can’t read the room. And when you can’t read the room you don’t know when you are being the asshole.

And here’s the real heartbreaking part. He may not know why, but he knows that sometimes kids don’t want to play with him. He knows he says and does things that frustrate us as his parents and the people around him. He can tell me exactly what strategies to use when he feels upset (slow down and breathe first, then choose what to do). He knows all of this.

And when he gets frustrated, he can’t stop. He can’t do the things he knows how to do to be a good friend. He can’t calm down, even when he knows he should, and knows how. He won’t lie to make someone else feel better, even if that means he loses the chance at a friend.

He understands himself and his choices better than most adults I know. And he’s 6. But all that understanding doesn’t help him make different choices.

Because of all the spaces he can’t read, the one that is the hardest for him to read is the space between his ears.

And for us as parents, watching all this, powerless to stop it? Stress, like the heat in Morocco. Pounding from all sides, all the time, fading only at night when rest brings respite and the promise of more struggle tomorrow.

In the end, parenting IS a marathon, and there is no easy marathon.  Having a special needs child is like running an ultramarathon. And if there is no easy marathon, then there is damn sure no easy ultramarathon. But the advice to complete any race that is unreasonably long or hard is much the same.

• Prepare the best you can, knowing that you can never really be prepared for a uniquely difficult challenge.

• Hydrate. Rest. Eat well. Take care of yourself the best you can when you can. 

• Run your race. This is about you, not the other runners.

• One foot in front of the other. Repeat.

• Find joy. The very first athletic thing you learned to do was run. It is as natural as breathing, and when we are small we do it for its own reward.

When you become a parent, you hold your baby in your arms and you wonder what they might become. You marvel at how they could be so perfect. And you feel love with no end, and no limit.

Parenting Willie and Justin is not easy. Parenting them together (along with 3 other equally amazing - and challenging) kids has at times felt impossible.

And there is no place that I would rather be than right here, with them. Taking each step together. 

To me they are the same as they were on the day they were born. Perfect.

May it ever be so.