In about one month’s time, God-willing, my newest niece or nephew is scheduled to make an initial appearance in Dallas, TX. The following week, family from all over the country will descend on the Lone-Star State in order to welcome him or her into our family and into our covenantal people. I, however, will be making the trip alone. And it saddens me.
Different families have different approaches, I have discovered, when it comes to family simchas. As far as my family goes, presence at a family celebration, be it a college graduation or a baby naming, is de rigueur. Even when it involves cross-country flights. Distance was never considered a barrier to attendance. Neither, to the best of my knowledge, were finances. Somehow there was always a way for the family to be together.
Which is why my decision to travel solo next month is a painful one.
Our oldest child, Ben, has Asperger’s Syndrome. This high-functioning form of autism makes life challenging. For him. For his siblings. And for us, his parents. Because autism is a spectrum disorder, one child’s autism is not the same as another child’s autism. Though there are shared aspects, there are myriad manifestations of this developmental disorder.
Ben tantrums. He tantrums not because he is spoiled or because he is being willfully defiant, but because he has no other method by which to handle changes in his preferred status quo. He tantrums when external forces invade his comfort zone. Sometimes we are able to anticipate these changes; often, though, we cannot.
Travel, of course, is all-kinds of crazy when it comes to changes in one’s routine. Without the structure of the school day, Ben tends to be at a loss for what to do with himself. Even with his handheld electronics, several hours of being cooped up on a plane is like asking him to melt down. Changing time zones wreaks real havoc on his incredibly rigid circadian rhythm. Being in a new location is the source of tremendous anxiety. Being somewhere different, away from home, not knowing if he will like the food that is served, what the temperature will feel like on his hyper-sensitive skin, and so on all contribute to a near-paralyzing apprehension. The anticipation of all these variables creates a disquiet that begins weeks prior to the actual event.
This is not how I want to experience my introduction to my newest niece or nephew. I want to be fully present at the naming or bris. I want to be able to assist my brother and sister-in-law by being a second pair of hands. And I want to do this unencumbered. Which means leaving Ben behind.
I mentioned this to my sister. About how sad I am about leaving my family at home. And how angry I am that autism seems to influence every aspect of our lives. And how excited I am to have a few days away from Ben. And how guilty I feel about feeling excited about being away from Ben. And how guilty I feel that our other children will miss out on the family celebration because Ben’s tantrums at being left behind would be almost as bad as the ones he would have if he came with us. And…
“All things being equal,” she began, “you would all be there.”
All things being equal.
Those four words stopped me in my tracks.
All things being equal.
Why is it that after all these years, and after many hard decisions that as parents of a child with special needs we often make, I continue to compare my reality family to my fantasy family? You know that game. The fantasy family is the one with perfectly-mannered kids who are adventurous and clever and just really, really awesome. And with a fantasy mom who possesses unbound patience, unmatched creativity, and unlimited energy. The family who will always be better, stronger, happier, because …it doesn’t actually exist. And the constant comparisons do nothing to build us up and do everything to tear us down.
All things being equal.
My sister is a wise woman. Because all things aren’t equal. Ben does have Asperger’s. Ben’s Asperger’s does affect the dynamics in our home, the parents we have become, and the choices that we make. And unlike other habits, while making decisions based on Ben doesn’t get significantly easier with practice, there is one thing that can affect my outlook; it’s those four words.
All things being equal.
To be used not as an excuse, but as a reminder to see our situation for what it is and accept each decision as being the best choice for my family.
[Not to mention a reminder that my little sister is awesome and an eternal source of strength.]
