The Maine Maritime Museum in Bath is like a trip to Disney World for me. As a second generation mariner, each painting and artifact serves as a Stargate to transport me to the time of kindred souls who have navigated earth’s oceans for centuries. As I bend to see the diarama of the working Bath waterfront in the 1800s, I stroll past the ribs of ships along Front Street, smell the cod drying on the racks, and hear the rough language of sailors provisioning for a voyage that will begin with the outgoing tide.
It is of course an idealized scene pieced together in my imagination through a combination of novels, old movies, high school history and an inherent sense of how things ought to be. Nowhere in my miniature walk through antebellum Bath are the realities of disease, frigid winters or chronic want among the most vulnerable of that time.
For a long time I fell victim to the same kind of idealism when it comes to holidays. As one who loves art for its transformative influence on me, it’s not surprising that my idea of Christmas comes from Currier and Ives prints of kids with red mittens skating in the snow, or from Norman Rockwell’s image of a happy nuclear family crowding in through a white front door, arms overflowing with bright, colorful, perfectly wrapped gifts.
Real life isn’t like that. Whether you have kids with autism or not, rating our holiday based upon a scale that measures how close we came to our imagination is doomed to fail. And if you do have kids with autism, or grandkids with autism, well . . . we need a rating scale all our own.
It took me a long time to get here, but now I measure our success as parents on each and every day based upon three factors:
- Are my sons safe?
- Are they healthy?
- Are they happy?
This includes holidays. Stay with me on this, because I think I’m onto something. If you adopt this rating scale, your world, and I imagine your contentment within it, becomes a different place.
Christmas Eve at LifeChurch is always a special thing. It begins with a live nativity redolent with the smell of hay, donkeys braying, and sheep nosing those who come close, in hopes of a handout. You can get a mug of hot chocolate, and sing with the carolers until service starts at 4 o’clock. Families keep arriving. In true downeast style, some are dressed in their Christmas best; others are more practical in jeans, down vests and muck-kicker boots. December 24th is just three days after the shortest day of the year, and in Maine that means it is already dark. People move inside. There is candlelight. The worship band blasts out Joy to the World; Darah and Shannon lead us with perfect pitch and voices that come from God himself. Pastor “Grampa” Sam puts on a cardigan, settles into a wingback chair, and with two of his Nordic grandchildren on his lap, reads us all the Christmas story. The children in the congregation fidget—they are anxious about their upcoming performance as bell ringers to the tunes of Jingle Bells and Away in a Manger. The performance is terrible in its musicality, and precious in its authenticity. Kate and Kim scramble to herd the kids back on tempo, and separate two who are physically competing for the spotlight. More than one child ignores the color-coded cues of which bell should ring at what time. It is perfect.
It is perfect, and not once did either Jason or Joshua participate in this performance in the years we have attended LifeChurch, or the church before that. Nowhere in that line of cute chaos over the years were my sons ever seen or photographed, because they would have hated every minute of it. The sounds, the smells, the disruption to their routines, all would converge to overwhelm their senses and security. For our boys, a perfect Christmas is anything but all of this.
It’s sad. I won’t deny that with each holiday, birthday, dance or graduation that does not conform to our idealized conceptions of what should be, and what “the other guy” gets, there is grief. When people ask me what having kids with autism is like, I tell them sincerely it is like dying of a million small cuts. The original diagnosis is severely traumatizing, and for some that trauma fades only with self medicating through alcohol, drugs, the arms of others, or bitterness. The problem with self medicating is of course it is temporary; and whatever you are avoiding through the scrim of vice is right there to greet you again should you reach out from beneath it. For those who emerge from the initial trauma, there are reminders daily through the inevitable comparisons with others that are hard to avoid. It is like dying of a million small cuts.
Most of us today have kids because we want kids. More succinctly, we want a specific kind of kid. A normal kid. That’s what we had in mind. But whether you have normal kids or special kids, it doesn’t take long after putting that child to sleep for the first time at home to learn the world no longer revolves around you, once you have a child. Pretty much everything revolves around your kids from the moment you have your first one. Stories abound about how mothers and fathers through the millennia went without, so their children would not go without.
For we who have children or grandchildren with autism, that extends to adjusting our imaginations of what a perfect celebration is. Doing without, so our children do not go without, means making the children happy on these special days, regardless of age. For your loved one with autism, that may mean skipping the holiday meal with guests; receiving gifts that are not wrapped with annoying and noisy paper; or engaging in a meltdown to communicate that as much as we try, they too live in a world we cannot fully control, and that’s just the way it is. Wait the tantrum out, it will pass. It always does. It does not define the future anymore than it defines the totality of the past. It is an event; nothing more or less.
Reflect on our recent Christmas or Hanukah: Was the child safe? Healthy? Happy? If you can answer yes to one or more of those questions, congratulations. You had an incredible holiday. Me too.
Now it’s time to get to work for a 2015 of preparing for, or navigating, a Transition to Adulthood. See you again soon.