'Hitting Your Groove': How Special Needs Parenting Is Like Learning to Drive


I’ve had a few people (OK, a lot of people) say they can’t believe how much we have to do, how we remember to do it all or how we even know what to do (you get the picture) with our son Aaron. I often shrug my shoulders because it’s become mostly second nature. Second nature to know at a glance or two if he’s just being a monkey with his equipment or if there’s a real issue. Second nature to remember to give him his breathing treatments and other meds. Second nature to hook him to travel equipment and put him in the car. Even second nature to call 911 for help. (I still wish that one wasn’t quite so familiar.)

But think about when you were learning to drive a car, and think about where you are today. Now you climb in the car, unlocking it as you approach. You don’t even think as you put the key in, adjust the seat and mirrors, turn it on, look around and shift. Approaching a corner, you slow and put on your signal, and you know just how long it’s going to take to slow down and just how fast you should take that curve. And you probably fiddle with the music while doing all of this and don’t even give it a second thought. Your mind and body know what they’re doing. Oh sure, the occasional road construction may throw you a detour, or sometimes your car makes a weird knocking noise or there’s that car that suddenly appeared out of your blind spot just as you were getting ready to make a lane change. But for the most part, driving has become instinctual.

Remember when you first started driving though? Even putting on the seatbelt was a bit weird – after all, it crossed from the opposite side of what you were used to as a passenger. You weren’t sure about cranking the key. How far do you turn it? When do you let go? Then what? If you’re like me and have taught teens to drive recently, you may know you have to tell them to step on the brake when starting the car and keep the foot on the brake until after they shift. If you haven’t had to teach this, you may not even realize you do it. Taking corners can become an exercise, driving in way too fast (four wheels on the road, please!) or way too slow.

Special needs parenting is a lot like learning to drive. In the beginning, every beep and every twitch can be cause for worry. I love that I was able to do my “learner’s permit” in the hospital with Aaron.

I remember the first time the alarm on his ventilator signaled high frequency (meaning he was breathing too fast at 80 breaths per minute). I freaked out and grabbed the nurse. “Why is he breathing too fast? What’s happening?” She replied, “Oh, it’s probably just some water in the tubes.” She dumped the water out, and yep, he was good. The next time it happened, I remembered it wasn’t a big deal, but I couldn’t remember why or what to do. By the time we got home, exactly two weeks after getting his trach, I knew exactly what to do when that alarm sounded. Now that I’ve got a lot more “road hours” behind me, the “high frequency” alarm never goes off. Why? Well, it’s because I’m so used to the sounds of his ventilator breaths that if he hits even 50 breaths per minute, it sounds fast to me and I empty the lines.

So like anything else, there’s a learning curve that comes with a medically fragile kiddo. And just like driving, you still have to stay vigilant even after you’ve become experienced. Sometimes there are new roads or new routes that have to be learned.

And it’s scary, especially at first, because that’s your child’s life in your hands. But just like with driving, you learn to get comfortable: you hit your groove. And then, you can’t imagine what life would be like without it.

There are some things you learn best in calm,

and some in storm.  

— Willa Cather

rebekah's son smiling

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