When a Community Isn’t

The Boy had a pre-contest concert this past week. And prior to that concert, he was behaving oddly, suddenly announcing that the band sounded terrible and that he didn’t want to perform. I’m still not quite certain what instigated this, but I think it stems from the change in band directors this year, and all of the changes he’s had to deal with recently. He had purchased a conducting baton online and when it came, it lasted about a day before breaking. I attempted to fix it, but the morning of the concert, it broke again, in two places. He almost didn’t get out of the car at school.

Suffice it to say, it was a perfect storm for a meltdown, and I wasn’t sure I wanted to put him in the high-pressure situation of a concert.

He went back and forth all day, and finally, ten minutes before we needed to leave to get him there on time, he decided that he would get dressed and go. We went, he performed, and all was fine. My nerves were shot by that point, but as I sat with another autism mom whose kiddos are in the band, I was breathing a big sigh of relief. The band was still onstage, being clinicked by a band director from a neighboring school. The Boy was wandering backstage, occasionally making an appearance in the wings with a new baton a friend had purchased and brought to the school for him (another long story!), conducting as the band was clinicked.

And then, another parent approached me.

It was a mom I knew by sight of a girl in The Boy’s grade. I had chaperoned their 8th grade band trip, as her husband had. I knew they also had an adult son on the spectrum, and they often say hello at band events. She had a book in her hand and began to tell me how wonderful it was, that she had just finished reading it, and had I ever considered a gluten-free diet for The Boy?

I groaned, inwardly.

No, we hadn’t tried it.  Yes, I was aware it helped many kids, but not all, and yes, I had considered it many years ago but decided against it largely because the only things my kid would eat were pizza and grilled cheese, and if I took those away he would starve.

She looked at me with some consternation and said that she would try anything if there was any chance it would help.

Well, thankyouverymuch.

She spent another few minutes urging me to look up the author and read the book before making her goodbyes and wandering back to her seat to wait for the band to be released. I turned to my other friend, explained what the conversation had been about, and we shared a bit of a laugh, as her son on the spectrum has a bit of a love affair with sugar and junk food.

If we can’t get patience, understanding, and acceptance from each other, how do we expect to get it from the rest of the world? At the end of a long, anxiety-ridden day like I had had, the last thing I needed was to have another autism parent try to get into a polarizing discussion about treatment options and then judge me for not making the same choices for my son and my family.

There’s one thing an autism parent doesn’t lack and that’s a sense of guilt for not doing enough or being enough. It doesn’t matter that it doesn’t make sense, the feeling is there and never quite goes away. Let’s not pile it on for each other, ok? Can we at least promise to do that? Within our own community? Can we?

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6 thoughts on “When a Community Isn’t

  1. I don’t mind the sharing of information, but the overt pushiness is just WAY too much. Keep it in check if sharing info! GLAD he got to the concert! (sorry it was such a stressful day SIGH)

      • Yes, kind of a surprise that she just read about it and thought it important to share given his age… Even though Andrew has Fragile X Syndrome, so his autism is supposedly due to his genetic disorder, we did try it when he was around 4. I’ve shared that some find it really worth it and some don’t find it helpful at all but typically I share with folks who have YOUNG kids and are NEW to various treatments. Peace to you!

  2. Oh dear… And anyway, I tried gluten-free for my son and it made absolutely NO difference at all to his symptoms. But I stuck to it because he seems to be a bit intolerant (digestion wise)

    I can’t ever imagine myself asking a parent “Have you ever tried..?” unless they’re asking me for advice or suggestions or are at breaking point and muse out loud, “I wish I knew what else to try.” It’s just not in my nature

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