I wrote this blog about Martin and autism in 2009 and 2010. I stopped during a particularly difficult time in Martin's life. And even when things got better, I failed to start writing again. The blog has sat dormant for four years.
Things did get better for awhile. Second grade was good. Third grade was good. Fourth grade, however, brought serious challenges and real setbacks. Aggressive behavior. Self-awareness of disability and difference. Medication difficulties. Even an emergency room visit.
But even that disastrous medical intervention did not prompt me to take up blogging again. Instead, it was my experience today of receiving not only some serious stink eye, but also the chance to witness the transformation of that stink eye into a look of pity typically reserved for baby seals and child refugees.
Let me explain. Today, Martin had a dentist appointment. Dental care and autism are no easy mix. Consider the challenges: weird environment, people in masks, instruments jammed in your mouth. Martin was almost six before he had a thorough dental exam and cleaning. That delay took its toll on his teeth. Just last year, Martin's dentist recommended plaque scraping, a crown, and sealant for some of his more vulnerable teeth. First, the dentist tried laughing gas to relax Martin for the procedure. It didn't work. We then rescheduled and employed the big guns: anesthesia. Dental success.
Martin's appointment today was his first cleaning since last year's procedure. He was already having a tough day. He didn't want to go. Like a fool, I didn't cancel. I pressed ahead. We arrived at a lovely office. The staff was terrific, even when Martin shouted and growled. We tried our best to make him feel at ease. At times it worked. The dentist cleaned eight of his teeth and gave the rest of them a careful look. I count that as a small success, overshadowed unfortunately by Martin taking a swing not only at the dentist, but also at the dentist's wife.
At the appointment's end, I left in despair. I decided to take the kids to the nearby grocery store that has a playground for shoppers and their kids right outside. We arrived. I escorted the kids to the play area, watched them begin to run around, and then told them I was stepping inside to pick up a coffee. I was gone for two minutes. That was a mistake. I shouldn't have left for two minutes, even though all I wanted in the world was a nice coffee drink to sooth my sadness about the dentist office. I shouldn't have left.
I came back to find an approximately 13-year-old girl gaping at me. As I got closer to the playground's edge, she asked me if the boy wearing the black shirt was my son. I said he was. She then informed me that my son had made her little sister, approximately age eight or nine, cry. "What did he do?" I asked. She replied that he had chased her and growled at her. The younger sister then looked at me, tears falling down her cheeks. She was being held by her mother, whose back was to me at the time. At this moment, the mother turned toward me and delivered a serious stink eye. We are talking Meryl Streep plus Lucille Bluth added to that girl from Juno. "I'm sorry," I stammered. "I will take care of it." At this point, the stink eye transformed into what only can be called a frozen stink eye, by which I mean the effort the stink eye giver takes to freeze the position in order to be sure the offender has seen it.
I walked over to Martin. I asked him what happened. He admitted that he had chased the girl and growled at her. He said that she bothered him. I take this explanation with a grain a salt. Martin thinks everyone is bothering him, that everyone is laughing at him. He is almost always wrong. I tell him that his actions scared the girl and that he needed to apologize. He walked with me over to the stink eye/gaping/tearful trio and said, "I'm sorry that I scared you. I didn't mean to." They looked confused. One of them said, "OK."
Martin and I walked away. But the stink eye remained. It stayed in place as Martin began to play again. It prevailed as I drank my cup of coffee, which was now no solace, but rather a sign of my mistake. As we prepared to leave, I saw the stink eye. It was still there! The mother was still mad at me. I decided to pull out the big guns once again. As I passed by her, I said, "My son is on the autism spectrum. Social situations can be challenging for him. I thought he'd be OK for a minute while I went inside, but I was wrong." The stink eye disappeared. Concern, sympathy, and sadness replaced it. Mother Teresa-face. I-feel-bad-about-the-Holocaust face. "It's OK, then," she reassured me. I wasn't a bad mother. I was a pitiable one.
This encounter destroyed my day, even more than the terrible visit to the dentist. I'm used to Martin's aggression. I'm used to failed enterprises. But I never get used to how people respond to autism. I've encountered everything from screaming to disdainful looks to half-baked dietary advice to saccharine-tinged smiles that mean to be nice but really say, "Thank God it's you and not me." And for those of you who wonder what you can do, I can only say this: from my perspective there is nothing you can do. There is no right response. I will probably react negatively to just about anything you offer. Because it is me and not you.
That's why I stopped writing in 2010. Because I could no longer tell this story to people outside of it. And I'm not really sure why I'm trying again.
Friday, July 11, 2014
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Love you, Jen. Keep it coming.
ReplyDeleteAs the mom of a 6-year old daughter on the spectrum, I understand the isolation, and it is soul-crushing. The small and large heartbreaks happen everyday, several times a day. However, I do think there is a right response, if one encounters a child displaying this behavior. (This is what I do with my daughter.) Squat down to eye level, ready your hands to catch swinging arms, if necessary, and say, "Wow! Seems like you're having a really hard time right now! You're really upset!" If this were at a playground with someone else's child, I might add: "Who's here to help you? Is your mom here?" All outbursts are attempts to communicate, even though our instinct is to run the other way. Parents with children on the spectrum need support and help, not pity and ostracization. Love to you, Jen. Keep writing.
ReplyDeleteYou are an amazing, strong, kind and honest person and Martin and Sasha are so lucky to have you. I'm sorry things are rough right now -- for you and for Martin.
ReplyDeleteI love Martin and you. I wish I could do more.
ReplyDelete