Life, in this Secret World of Autism, gets lonely. Our daily experiences are unlike anything we’ve read about, or seen in movies, or learned about in documentaries, or seen anyone else we know go through. We only have one child, and no experience of parenthood other than that of being special needs parents. What’s “normal” for us, isn’t for the vast majority of people, and what’s “normal” for them, isn’t always possible for us. We feel isolated… We are isolated.
It feels like living in a bubble. We can see the outside world beyond, but only get to dip in and out as much as is possible for our son. We see other people’s lives, but can hardly relate to them. And they don’t see much of ours, because most things go on behind closed doors. Even when we go out, it’s easier to go out solo as a family, because adding people to outside or new activities, makes them more unpredictable and overwhelming for Aidan. It’s not personal, not at all, it’s just simpler for us. And so there are days, weeks and months, where we only really see each other. And at first this made us really depressed. Because we felt so completely cut off from everyone and everything else. And at a time when we needed a lot of additional emotional support. But in all honesty, over time, we’ve grown used to it. We happily plan our weekends as a threesome, and focus on packing them full of fun outings and activities!
But us humans, are built for connection. And before we became special needs parents we had some strong, beautiful, and extremely valued friendships. Lifelong friends, and friends who became family along the way. And just like any other person, we’ve needed and been so grateful for all of them. They’ve enhanced our lives with love, laughter, and so many happy memories! And on some level, we still need that happy, carefree time with loved ones. Perhaps more than ever. But we’ve lost a lot of those close and loving connections. And that’s simply for the fact that we don’t have the time, energy, or capacity to nurture those relationships in the way they deserve to be. When we’re not busy with Aidan, we are decompressing. And when we’re decompressing, the last thing we have emotional bandwidth for is explaining severe nonverbal autism to people who don’t understand how complex it is. Or why we make certain decisions. Or why we live a certain way. Or why we have certain limitations. Because truthfully, a lot of very simple things are hard for our boy and so hard for us as a family. Aidan is three years old, and we are unable to go to restaurants. Or outside venues that are too busy. Or even to private homes that have pets. And while we have accepted all of these things for ourselves, a lot of other people can’t seem to. Those people aside, I’ve found that even some good friends struggle to know what to say sometimes. Because we can go through very rough periods. And they don’t know how to offer their strength and hope when we’re in the wars with behaviours or illness. We don’t resent that at all, because there’s not much you can do for a family who can’t accept an offer to watch their high needs child for a few hours, or go out to tea for a chat.
We’d never expect anyone else to build an entire social event around our little man’s complex needs and sensitivities. But at the end of the day, we can’t be part of plans that don’t offer certain accommodations for him. Though we are beginning to do more things with family members again, we have yet to touch base with most of our friends. We are hoping that we have just been in a tough season of autism, and that seasons like this come and go. Now that Aidan is far more stable at home, and more amenable to visitors, perhaps we can begin by hosting lunches and dinners again. Maybe even a long, lazy Sunday afternoon braai! Because there was once a time when our house was always full of people, and we’d very much like to experience that again someday.
