6.10.2017

Sometimes Autism Means Missing Important Family Events

Baby Leo and toddler Iz with their beloved auntie
[image: two part-Portuguese little kids with their older
Portuguese auntie, sitting together on a floral print sofa.]
The funeral for Seymour's wonderful aunt is in a few days. He and the girls and I are going, but Leo is staying home.

I wish things were different, for Leo's sake and for ours, but this is our reality, and I think more families like ours need to know it's OK to talk about being sad about missing family events—as long as we also acknowledge that when autism is the reason, that's just the way your life looks. It's not an opportunity for blame or resentment. Making hard choices (and sometimes not having choices) is part of parenting, and part of being a family. Especially in a family like ours.

But I do sometimes see parents blame their child's autism in these situations, for not getting to join or enjoy family events both large and small. And that makes me wonder why this is considered acceptable, because once you have an autistic child, that's your reality. Ideally, you adjust your expectations for what you all get to do, while trying to accommodate your child as best you can, so your child can do all the things they're capable of doing, too. And especially when so many other realities that prevent families from being together are considered completely understandable. I've been thinking about some of those understandable examples from my own family:

My maternal grandfather worked on the railroads in the British Columbia hinterlands. He was away from home three weeks out of every month, lived in a caboose, and missed much of his kids' childhoods. Sure, my mom wishes her dad had been home more, but her family made the most of the time they had together. Everyone knew that was just the way it was, and that was the job he had. And when my parents had to choose between staying near family but my dad working away from home for weeks at a time, or moving away from family but having my dad home for dinner every night, they chose the latter. And my brothers and I grew up 1500+ miles away from any relatives.

My husband's grandfather worked the tuna boats out of San Diego, was gone for weeks at a time, and so was unable to be present in his son's life the way my father-in-law, and now my husband, were and are present for their offspring. This was how life worked for many of the Portuguese families in their neighborhood; no one questioned why families had to spend so much of their time separated, or why those parents had to miss so many of their children's milestone events.

My oldest brother recently retired from the military, but while active was deployed to both Bosnia and Afghanistan—the latter while his son was still a baby. While he would have preferred to be with his family while his infant son was taking his first steps, my brother never questioned his duty (though some friends without military context wanted to know why he couldn't just tell them that he had a baby. Um.). He did his tour, thankfully returned home, and has resumed doing his super-wonky intra-Beltway strategic work.

My maternal grandmother was my "very best friend," even though she lived in another country with the rest of my extended family. When she died, I was a grad student living 3,000 miles and across a border from her, making do on a small teaching assistant stipend. I could not afford to fly to her funeral. I spent days sobbing my heart out with grief, and raging at The Fates for their horrible timing, but I didn't blame anyone. It was my choice to go to grad school on the other side of the continent.

So when we attend the funeral of the very beloved aunt (for whom Iz is named), Leo won't be coming along. As much as he would want to see his extended family, he would really not enjoy or be able to tolerate sitting through an entire Catholic funeral mass, nor attending a burial—and it's not fair to him or to the other mourners to have an unhappy, unsettled individual present during those sombre ceremonies. So he will hang with some of his favorite people at home, go to school, and then return home to hang more of his favorite people until we get back.

Thing is, I know we're lucky. If we didn't know fantastic people to hang with Leo or have the ability to hire them, I would miss the funeral—because even though I sincerely adored my husband's aunt and keep listening to her saved voicemails on my phone (doesn't everyone archive the voices of the people they love?), she's Seymour's blood and he's the one who needs to be there. If I were a single parent, the kids and I would probably all miss paying our respects.

There are endless variations on why families don't get to do the things they want to do. Some of them really are unfair, sometimes someone or something really does deserve blame. But I'd like to see more understanding as a society that autism and disability are just part of some people's lives, like the other "just life" examples I listed—plus less social enabling of blaming of autism when event hurdles happen. Because autism acceptance isn't just a theory or an idea; it's a useful and healthy approach to life.

3 comments:

  1. I am sorry for your loss.

    And yes, we have faced these issues for years. You have to do what is best for everyone and when you are going to an event your responsibility is to the host/hostess and especially the immediate family members at a funeral.

    Knowing what your child can and cannot handle is important and thinking about what is best for everyone makes you a good person. We learned along time ago that you cannot have everything in life no matter who you are, this is just one of those "you can'ts" for us.

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