An Indulgent Post About Feeling Sorry for Myself

A few years ago, when Martin was still a baby and before I had any inkling that autism would strike our family, I attended a New York-area church-wide assembly. The church’s governing body stood in session. Under consideration was a resolution stating that member congregations welcome children affected by ASD and affirm their right to attend worship.

The delegates debated the resolution’s precise language. Would it say “autistic children,” or “children affected by autism spectrum disorders”? Should that be “persons” instead of “children”? Why limit it to ASD, instead of including all physical and mental challenges? Finally the nitpicking concluded, and the resolution passed overwhelmingly.

At the time, I found myself thinking, We need a resolution stating that children with autism are welcome in church services? Is that in dispute? Not self-evident?

Now that I’m parenting a child with autism, I may understand better.

Martin and I attend a cozy downtown church that reflects Manhattan sensibilities. The congregation is economically, ethnically, and socially diverse. During the week the building transforms into a soup kitchen and food pantry. It’s a boisterous place. Sunday mornings there, Martin is a rock star. Everyone greets him by name. Older children play with him; teenagers hug and squeeze him; adults engage him in whatever conversation he can handle. If Martin waits patiently after service for the pianist to finish performing, he gets to sit on the bench and strike the ivory keys himself.

During the service I try to position us surrounded by worship regulars—the people who know us. Then I can let my breath out, give Martin leeway. The regulars don’t mind when Martin comes crawling under their seats, grabbing ankles. They smile and pat his head. The regulars steer Martin gently back toward me when he wanders away. They ignore his sing-song chatting and the sound of his toy trains. They beam when he remembers their names, even if he shouts them in the middle of communion. They laugh when the pastor improvises: “I hear ya, Martin. This sermon’s been long, and I’m about to wrap it up.”

What’s much tougher is when we arrive late and end up seated with newcomers or guests, especially the kind who expect church to be solemn and silent. Martin and I enter the sanctuary with clamor approximating a blitzkrieg. We need five minutes just to settle and unpack: toys, books, napkins, containers of nut-and-seed crackers. I get self-conscious about this, if strangers are present. One week Martin’s sippy cup sprayed a couple ounces of seltzer water onto a woman we’d never seen before. She turned bright red, removed the offended blazer, and sat stiffly upright for the next hour, refusing even to look in our direction. Another week an older woman watched Martin scoot himself a few feet along the aisle floor during the sermon. Then she fixed a stern Please control your child stare on me, as if I were going to let him scoot right onto the alter. Which I considered doing. To spite her.

In times like those I see the wisdom of the resolution welcoming kids on the spectrum. Our pastor assures me unflaggingly that he wants Martin attending services, and buttresses the words with actions like finding ways to include Martin. (Martin was the little lamb in the Yuletide nativity scene. The little lamb who sobbed and tried to make off with the Baby Jesus.) But the pastor can’t be in every corner of the church at once; there will always be those who make it their business to express displeasure.

For them, I dream of carrying a copy of the assembly resolution. Of whipping it out of my purse and asking, “Have you seen this? It says that this denomination in this city welcomes children with autism, behavioral shortcomings and all. That means you will accept my son.”

And from there I imagine a magic piece of paper resolving that all of New York welcomes children with ASD. For the commuters who huff in annoyance when Martin moves too slowly on the subway stairs. For the baristas who give my spot at the coffee counter to someone else because I’ve had to chase Martin for a second. For the kids’ club that would rather refund our tuition than deal with Martin in class. Voila! A city made better.

The post really is not about ASD recovery, I suppose. It’s more about feeling sorry for myself. Forgive me the indulgence in exchange for this assurance: I really, really want to stop feeling sorry for myself. Some parents might accomplish that through emotional willpower. I, however, have the emotional willpower of a bacon-addicted puppy. Consequently, the likeliest way for me to stop feeling sorry for myself is to remove the sentimentality’s cause—to give the jerks fewer reasons to complain.

To zap the autism.

6 thoughts on “An Indulgent Post About Feeling Sorry for Myself

  1. I could relate to your experiences with Martin in church through my own episodes with my Granddaughter Amanda, and I could well understand how those adventures might be accentuated by ASD.

  2. You might be feeling sorry for yourself, as you say, but you are definitely diligent and that’s what counts, no matter how you feel about yourself. Important things are getting done.

    • “Important things are getting done.” I love that! The passive voice is perfect—honestly, the things are happening because of the hard work of a whole team, and Martin himself. I’m instrumental, but it’s not my deal.

  3. Pingback: Going First | Finding My Kid

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