Weird but perfect

Karla lives alone on 40 acres outside a tiny town about a half hour’s drive from work. It’s a peaceful, magical place where she can retreat each day to recharge after a long day of interacting with people. She knows that a lot of people think her life is weird. That’s only because they don’t understand it. She says that people ask her all the time if she gets lonely out there, and she finds the question amusing. Far from ever getting lonely, she relies on her farm as a refuge from the rewarding but draining day-to-day life of job, socializing, football games and advocacy work.

There is always something to do at the farm, whether the rest of us would recognize it as “doing something” or not. It’s a safe place to get immersed in a special interest, throw yourself into physical labor, take care of the horse, watch the dog chase squirrels, stay up late to see the Perseids in summer, listen to the frog chorus in spring, climb a tree, hike through the woods, sit by the fire pit, search for koi in the pond, enjoy the sunset over the neighbors’ cherry orchards and grapevines. Once you come out to the farm and see things through Karla’s eyes, you “get” it.

When your kids are little, it’s natural to ponder what their lives will look like when they grow up, and I think most of us imagine that they will live somewhat like we do. Then, when the realization comes that your kid is different, you start to wonder if he will be able to have a “normal” life, and it’s easy to get caught in a downward spiral of negative thinking: will he be able to have a job? Live independently? Pay rent/mortgage? Have friends? Have a partner, be a dad? And when you think about all the things he may never do, in the context of what you HAVE done in your life, you see things from a “loss” perspective, perpetuating the spiral of mourning.

With Karla’s help, I flipped that thinking around. I dismissed the context of my own life and started looking at possibilities for Nick from scratch. What kind of life will he WANT to have? A house in the city? A suburban apartment? A rural retreat? Will he want a career in high-tech or a job at one of his favorite hangouts, the local reptile store? Will he seek romantic relationships or be perfectly content without them? Truth is, I don’t know. The person Nick is now is not the person he will be at age 18 or age 30. But seeing the way Karla has set up her life to suit herself perfectly, I know that all I have to do is be open to any possibility. So my goal now is to help him set up his life in a way that works for him. I won’t see it as a loss or failure if it doesn’t look like the life I imagined for him when he was a baby, or if it doesn’t happen on the usual timeline.

My job is to support him, not try to fit him into a preconceived notion. In his school, I insist that he have the supports in place to get the education he deserves in his own way. It’s not a failure that he doesn’t attend a full school day; it’s a grand success that he is thriving and learning on his custom schedule, on track to graduate with honors. And it will be a grand success when he, too, has a lifestyle that is weird but perfect.

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Story of a fencer

Nick fell in love with saber fencing at 8 years old, when he had an introductory class at a local community center one summer. He decided he wanted to continue with the sport, so we enrolled him at the fencing club and he progressed, slowly and with a lot of anxiety, but with determination.

It was not an easy thing to support. While other parents dropped their kids off and came back an hour later, I stayed and watched the class, often with at least one other kid in tow. Fencing is a sensory nightmare—swords clanging, machines beeping—and involves constant interaction with opponents who tend to disagree about who got the touch every single time. More than once I had to decide he was done with class before it was over, and sometimes I didn’t catch him pre-meltdown because it’s harder to read him when he’s hidden behind a fencing mask and supposed to be fighting.

Tournaments were a source of huge stress. Nick’s anxiety would be heightened by 1000% and he could not accept input from anyone—parent, coach, even a cheering teammate—without blowing up. He’d get stuck doing the same move over and over again, and his opponents learned that, so he became easy to beat. When he was about 11, his coaches told me that he had hit a wall and would likely never get any better at this sport.

It’s important to understand also that at this time in his life, his dad and I were still stuck in the cure/fix mindset. So our ideal was that he would learn to participate just like the other kids, and while we did get accommodations for him, we equated the need for these with failure, a sign that he would never be a full-fledged team member. His coaches saw it that way, too, and while they were supportive and accepting, they did not see him as a team member who could do them proud. He loved the sport but it was a huge stressor for all of us.

He stayed with fencing until he started junior high (7^th grade). At that point school was such a nightmare that it took all his energy to survive the school day, and he asked to take a break from it. That break ended up being almost two years long and I honestly thought he was done. We spent those years navigating puberty, connecting with Karla, establishing a whole new IEP for Nick, and changing our outlook from mourning and conceding to acceptance and support. By the end of 8^th grade, Nick had gone from violently lashing out several times a week to thriving at a new school under his unique IEP with a solid support team.

That summer, he asked to go back to fencing.

My immediate reaction was like a touch of PTSD. I felt a kick in my gut as I remembered him raging during tournaments, other kids making fun of him, his dad storming off, myself in tears.

I was honest with Nick about my requirements for trying this again: there could be no explosions; he had other tools now and he would have to use them. If he yelled at people, lashed out, refused to listen to his coaches… we would be done. He insisted it would be different now. I wanted to believe him. He had come such a long way, and he was really eager to do whatever it took to get back into this sport.

So I agreed to give it a try. The timing was less than ideal, since school was starting in just a few weeks and that would be a transition on top of a transition. But he was super motivated, and I had a good feeling about it. Plus Karla was all for him getting more exercise and thought he was in the right place mentally to make it work.

We were welcomed back warmly, and everyone I talked to commented on how relaxed Nick seemed. There were many familiar faces and many new ones, and Nick was epecially happy to see one particular coach, who had never given up on helping him improve. This coach immediately asked if he could have Nick for private lessons (they are required to do these as well as group classes). After their first lesson together, he said he was impressed by how much Nick remembered from before. Yes, he does have that steel-trap memory going for him!

Group class was an adjustment, as it was with a new coach who did some things differently, but while Nick told me there were some things he didn’t like, he accepted those things as part of the package. True to his word, Nick had zero problems staying calm in class. He participated fully in every activity. Before I knew it, he was handing me a tournament schedule and saying he wanted to compete.

At his first tournament since his return, a very small local match, not only did he NOT explode, but he smiled between bouts, accepted coaching and cheering, and came away with a second-place medal out of four boys in his age division. His coaches kept telling me that he has matured in amazing ways from their perspective, that he is able to think on his feet and try something else when his tactics aren’t working. As his private coach put it, with some amazement in his voice, “He has learned to change his mind.” And instead of rejecting a coach’s suggestion with “that won’t work” because he tried it once and it didn’t work, he is willing to try again and use different strategies in different situations. Another coach said that he is not only “a very competent fencer” but he has the potential to continue improving indefinitely. The walls are gone from around him.

Is he just like all the other fencers now? Hell, no. He still needs accommodations—the freedom to leave class if he needs a sensory break, the hand signal that means “stop talking to me” if he can’t process any more input. He flew to the top of the waiting list for a locker so he wouldn’t have to stress about about remembering to bring the right things or risk someone moving his stuff during class. He paces regularly without anyone telling him to stop. And of course we still have our silent rides home.

The folks at the fencing club always liked him and treated our family well, but the difference now is that they don’t see him as someone they are accommodating despite his limitations. They see him as a full-fledged club member who can represent the club as well as any of his teammates, with just a little extra support.

So let’s sum up. Not just in fencing, but in life, I’ve had two ways to look at disability and accommodation.

Old view: Nick’s disability limits him, and his accommodations limit the extent to which he can participate.

New view: Nick’s accommodations give him access, so he can participate fully despite his disability.

I’ll keep the new one.