The starting gun goes off loudly and without warning, usually in the office of a developmental pediatrician. Some of the worst news of your life delivered in a room with Care Bears smiling down on you. You hear the word “autism” and the floor beneath you falls away. Head swimming, you hear snippets of words like “early intervention,” “speech therapy,” and “special education.”
And next, with all the best intentions, as the doctor escorts you out of his office, he gently puts his hand on your shoulder and tells you: “Just remember, this is a marathon, not a sprint.” In other words, pace yourself; this will be a long, grueling race.
To participate in the autism race, you must first qualify. Some qualify at an early age, some later. How does one qualify, you might ask? Well, there’s a long list of ways: your child’s lack of language is a biggie, as well as lack of joint attention, a preponderance of sensory issues (clothing tags and sand were some of ours), preoccupation with parts of things (the wheels of a toy instead of the toy itself), and aversion to loud noises. The list goes on and on.
Whatever the circumstances, one day you ask Alexa to add blueberries to your shopping list, and the next you hit the refresh button on Google 900 times. Searching. Scouring. Looking to define a term that didn’t inhabit your vocabulary 24 hours prior.
In retrospect, as I consider the pediatrician’s advice, I have a quibble with the marathon analogy. Marathoners train. Marathoners hydrate. They stretch before and after running to prevent injury. Most importantly, they pace themselves. They build a strategy. The strategy for running 26.2 miles is decidedly different than that of the 1,000-meter race. If you go all out at the starting line, you will drain your tank by mile 15.
I went all Usain Bolt out of the gate when my son was diagnosed with a developmental delay 20-some years ago. When I got home from that appointment, I sat myself down and began the torturous task of fixing what I could. That’s what I thought when I started my race.
These days, the word “fix” doesn’t inhabit my vocabulary. I now know that my son needed my help, but he didn’t need “fixing.”
But because I kept thinking this was a race with a finish line, I didn’t pace myself. I didn’t practice “load management” like an NBA star seeking to conserve his energy for games that matter more than others. I went all in, every day. And that approach took its toll on my body, my marriage, my other child, my friendships, my career, and some days, on my sanity.
In a way, the pediatrician was correct: This is a marathon of sorts. Conserving energy is critical lest you flame out in the middle school years when the terrain gets really challenging. But it’s also a crew race—because you can’t do this alone. You have to have a team in your boat.
Who else is in the boat? Well, your spouse is hopefully there, hands callused and convinced a lighter shell would win this race, but unsure what to jettison. Some family members might be sitting right alongside you, rowing as hard as they can. They take your late-night panicked phone calls, listen, and help in big and small ways.
There may be good friends in the boat rowing with you. They bring you dinner, take your kid to a therapy appointment so you can get your haircut and maybe even colored (yes, gray hairs come early and often).
Make no mistake: you are the coxswain. You are in command of this boat, and it’s up to you to keep everyone rowing in sync. Your child’s future depends on it.
You will notice friends and some family on the shoreline as you row past, yelling, “You are killing it!” Their enthusiasm is heartwarming but not particularly helpful.
The final group tunes in for the SportsCenter highlights at 10:30 p.m. They don’t want to know any of the details, but it’s bad form not to know anything, so they digest the 30-second version and move on . . . maybe to Cabo for vacation.
It took me a while to realize how important it is to discern who is in my boat, who is on the shoreline, and who is watching an entirely different race. This prevents constant disappointment in how others show up for my autism race. I’ve learned to lean into my crew, nod to the spectators, and block out those who don’t think my race is very fun or entertaining.
Most of all, I’ve learned to stop comparing myself to the other “typical” boats in the water. Yes, they may have an unfair advantage, and yes, they will likely finish the race long before I do. But I remind myself that my child is in my boat, so I just need to keep rowing.
I’ve also discovered that this race is sometimes a relay. I’ve learned to pass the baton to my spouse for intervals, get a family member to run a leg from time to time, or ask a friend to carry my things. I’ve discovered that therapists and teachers make stellar relay team members; they have been critical to my staying in the race for as long as I have.
I’ve learned to accept any and all help because we parents need to recharge our legs, hydrate, eat the Goo for sustenance, and gear up for the next leg of the race.
Oh, and did I mention that as my son has aged, I’ve noticed that someone keeps moving the finish line?
by Kate Swenson 
by Joanne Giacomini 
