April is Autism Awareness Month. It is also the month that marks the start of the PGA tour. What on earth do these things have to do with one another you might ask. Well, as the parent of a child with autism, who also happens to be a very talented golfer, my worlds collide in April. He is out on the golf course right now, with his dad and two young midshipmen we sponsor from the U.S. Naval Academy. If this round is like prior ones, my son will win with a score in the mid to high 70s. He will best these two young men who will go on to serve as officers in the Navy. And tomorrow his support person will show up to work on the “Choice Chart” for how to spend his downtime.
What’s important to highlight in this month of autism awareness, is that despite how genuinely different our voyages across the spectrum are, there is commonality in our shared experience of raising a child with this particular disability. My son can talk, he can live semi-independently, he can manage basic daily living tasks. That’s more than many people get. Yet as he ages into his mid-20s, the stark reality of his limitations becomes clearer: He can’t hold a full-time job, he can’t drive, he doesn’t understand money, he will always need a certain level of support.
I hid for a long time under the cover of having what I considered one of “the least disabled children” on the spectrum. And because in some ways my kid presented as the “least disabled,” I didn’t feel my story was worth telling. But if we want people to understand our kids collectively, it’s important that they understand this: Autism isn’t a missing puzzle piece. It’s a jigsaw puzzle that has 10,000 pieces and no picture on the box.
At the end of the day, my puzzle may look very different from yours, but as parents we are puzzlers to the death.
There is a famous essay written by Emily Pearl Kingsley about what it’s like to have a special needs child. It’s called “Welcome to Holland.” Kingsley writes about the experience of having a child as preparing for a vacation to Italy—you buy all the guidebooks and do all the preparations and talk to all of your friends who have been to Italy. And then, when you have child with some type of special circumstance, it’s like the flight attendant gets on the intercom when you land and says, “Welcome to Holland.” Holland isn’t a terrible place; it’s just different.
“Welcome to Holland” was written in 1987, long before the internet, and before social media. Kingsley wrote poignantly about the pain of comparing your situation to the situations of those around you. Nowadays I feel like desperately needs an update. In 1987, hearing parents go on about life in Italy was limited to conversations you shared at the playground or parties. Now you are not just hearing about everyone’s lives in Italy, you are forced to see it, like it and heaven forbid comment on how wonderful life looks in Italy.
I rarely post about Holland. I mean, if social media is our highlight reel, life in Holland often feels like an endless reel of stuff that was left on the cutting room floor—family parties ruined by unexplainable outbursts, days at the beach foregone because he can’t stand the feel of sand, Fourth of Julys spent indoors due to a pathological fear of fireworks…you get the picture.
Despite these challenges, I was blessed with the rare gift of dual citizenship: We lived in Holland, but we spend an inordinate amount of time in Italy because of my son’s remarkable golfing talent. At around three years old, my husband got him the cutest little set of Snoopy golf clubs, hoping to teach his little boy the game he loved. And I’ll be damned if Matt didn’t hit that golf ball on the second try—in the air! Not far—but in the air!
When you have a typical kid who shows promise in a sport, you go all in. When you have a special needs kid who shows promise in a sport, you go all in….and then some. I walked miles following my son in golf tournaments over the years. There were no compensations for disabled kids; you either could play in an AJGA or US Kids events or you couldn’t. No special rules and no special caddies. Our kid played.
If you are not familiar with the game of golf, I assure you that there is not a more stressful pursuit than watching your kid participate in an 18-hole golf match—and that’s if your kid have autism. An errant shot on any hole can literally blow up your match. I feel like it’s akin to watching a kid in a figure skating or gymnastics competition. Fail to land the double axel or fall off the balance beam and bam—game over.
I followed our son to our junior club golf championship, the high school county golf championships and twice to the high school state championship. It brought him—and us—so much joy. He was legitimately great at golf; not “good for a disabled kid.” The golf course was the great equalizer. On it, he was just like everyone else. And there was happiness, but looking back, also great heartache in this. We lived our lives with one foot firmly planted in the world of the disabled, and the other firmly planted in the typical world. We played sports in Italy. We went to school in Holland. This dual citizenship made us a bit of a family without a country; neither place was really home.
Matt loved being part of a team. It gave him that sense of community and friendship. And he was a highly valued member of his high school golf team because he was so damn good. He was one of the team captains his senior year. And the kids he played with were welcoming and always up for including him in a social round of golf. But his social limitations meant that’s where it ended—on the 9th or 18th hole, hat in one hand, the other hand outstretched in the gentleman’s handshake saying “nice round.” And then I drove him home, while the rest of the kids piled into cars with one another, making weekend plans, trading gossip, being teenagers.
Here’s the other tricky thing about this whole autism scenario: I didn’t feel like I had the right to feel bad about it. My son could play a varsity sport in high school. I should be grateful. I mean, I grateful. But also sad. Because here’s the thing: When you have a kid who appears to be the “least disabled” you are the envy of other special needs parents. At the same time, parents of neurotypical kids pity you because they see the deficits.
So this family without a country bounced back and forth between Holland and Italy. But this dual citizenship of mine carried an invisible burden. I saw every day what Matt’s life would be like if he were not disabled. I tasted a bite of that pizza on the daily, put it back in the box, and walked away. If ignorance is bliss, it follows that knowledge is misery. If I had stayed in Holland, I wouldn’t have known what everyone else Matt’s age was doing. But I crossed the border daily, and the grass was always greener in Italy. Even if that grass was only on the 18th fairway at a golf course, it was always greener.
Today, one in 36 children will receive a diagnosis of autism, according to the CDC. And no two of them will present the same. Autism is verbal and non-verbal, visible and invisible, brilliant and cognitively impaired. When you think about it, it’s crazy that we use one term to describe a condition with so many variabilities. Am I lucky that my son’s condition could be so much more complex—absolutely. And am I sad that he won’t experience the kind of independent life I have full of rich relationships and conversations—absolutely. I am grateful; I am sad. I am a mother with dual citizenship in two vastly different countries. Time to get more pages added to the passport book.
