My wife and I lived in Princeton, NJ when our first child was born. Princeton is a beautiful, historic, culturally- and academically-rich town, and perhaps it was this heritage that convinced us of all the great accomplishments that naturally awaited our daughter in the future. Long before Samantha’s birth we were already excitedly planning the activities and successes that seemed to be the birthright of every child born to a professional couple in Princeton. It didn’t take long for us to realize that none of those plans was likely to happen – proof once again that there is truly no sound louder than God laughing at our plans.
Samantha is the kindest, sweetest, most thoughtful girl in the world, and the entire universe was created long ago simply so that she could be here with us. But since all things must be in balance, she is also aggressive, unpredictable, often violent, uncontrollable, irrational, and incredibly lonely. Our other, younger daughter has essentially lost her own personality and now has become largely a by-product of her sister’s behavior — depressed, angry, completely lacking in confidence, sad, confused, paralyzingly anxious, bruised, and often scared to death.
We have arranged our entire lives around creating an environment in which Sam can feel comfortable, and which filters out as many of her triggers as possible. It has become almost automatic – we are so used to operating this way that we rarely have to consciously think about some of it any longer. In fact, some of our days now pass for what we consider “normal”. But, as any family with a child with autism will tell you, our normal is nothing like what most other families take for granted.
Let’s face it, life in the suburbs is competitive, and it is not difficult to find parents willing to take assertive efforts to ensure that their children excel. As children get involved in more and more activities, the logistics required for getting each kid to and from their activities and practices are daunting. From lacrosse practice to Taekwondo, to piano, to gymnastics, and then (maybe) home. No doubt, it’s exhausting and challenging, and probably on some masochistic level, fulfilling. And that’s normal – that’s what parents do, and that’s what families do. That’s normal. Just like going out to eat, visiting friends, having play dates, waiting in line at the grocery checkout, eating meals – regular normal stuff.
And I don’t have the slightest idea what that feels like. That’s not my normal.
And with a few exceptions, those parents don’t have any idea what my normal feels like. Every day when my younger daughter gets home from school, she runs into the house, changes her clothes, and within five minutes is sitting in my car waiting to be driven to the stable to ride and care for her horse. That seems normal, right? But the reason we bought her a horse and drive her 15 miles each way every day is because she can no longer safely be in the house with her sister. Not normal. (Fortunately, she loves horses more than anything in the world, and sister or no sister, there’s no place she’d rather be. We lucked out bigtime on that one.) Like many families with a member with autism, we balance on the head of a pin. We are uptight, continually vigilant for danger signs, always preparing, always defending. Fortunately we don’t feel the need to explain any longer – adjusting your life to autism doesn’t translate to people who don’t live with it daily anyhow. People are, after all, only able to put things into the context of their own lives, and fortunately, most of them don’t have to contend with anything like this. They can go about things “normally”.
But like Teddy Roosevelt said long ago, comparison is the thief of joy. I have no idea if I’m envious of the normalcy I see in other people’s lives because I don’t waste my time thinking about it. We have our own kind of normal, and we’ve grown accustomed to it. More often, I suppose, I wonder how any of them would handle the chaotic adventure that we face every day in literally everything we do. And when Samantha is having an especially bad or aggressive day, we consider ourselves blessed that she is with us and not with someone less patient or less loving or less forgiving. And somehow, through all the unpredictability, chaos, limitations, and wackiness, we manage to have a lot of fun, share a lot of love, and do some pretty wonderful things, probably even more than our rightful share. I don’t know how anyone else feels about their “normal”, but I sure feel blessed with mine.