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In Their Own Words – Can You Appreciate My Son’s Successes?

October 8, 2010 55 comments

This “In Their Own Words,” post is by Shannon Des Roches Rosa.  A version of this essay originally appeared on Shannon’s personal site, www.squidalicious.com, and on www.blogher.com.

Last week, my son Leo and I had the loveliest day together. It was a pleasant day, full of the kind of errand-running and necessary outings that might cause a neurotypical kid to grumble. But Leo, who has intense autism, was a great sport and good company as we trotted all over town. Still, I suspect we may have looked odd to folks unaware of Leo’s challenges, to observers who couldn’t know that it has taken seven years of hard work by Leo, his family, and his team of dedicated professionals and educators to help our boy behave quirkily when he’s out in public — instead of totally out of control. Instead of not going out at all. So, theoretical observer, let me interpret for you, in case you are curious about kids like Leo when you see them out and about, and wonder what is going on with that funky kid and his or her parents. Let me explain to you just how successful our boy’s day was. We started our day accompanying Leo’s five-year-old sister to her soccer team’s picture day. I held his hand the entire time, which probably looked odd as he is obviously not a small child himself. Why do I hold his hand? Because he’s less likely to bolt. Because noisy, swarming little kids make him skittish, and holding my hand helps keep him calm. While we were waiting for his sister to stop making faces at the camera, I introduced Leo to several parents. After I told Leo each person’s name, he replied on his own, “Hi, ‘Name.'” It was great to see smiles from parents who knew of Leo but had never talked to him before, and didn’t realize what a friendly, polite kid he is. Successes:

  • Leo didn’t bolt.
  • Leo waited with me during a non-preferred activity for 30 minutes, without getting impatient.
  • Leo didn’t treat the small kids like the bowling pins to his bowling ball. No one was scared of him, much less hurt by him.
  • Leo spontaneously inserted correct names into a social greeting, with eye contact, and with an appropriate response to a social question.

After pictures, the three of us visited a local cafe for a snack for the kids and coffee for me. Leo spied bagels in the display case and asked for them, so I told him and his sister to sit down at a table and wait while I ordered their food. But the barrista mixed up our order, which caused confusion and delay. I started to panic — Leo kept asking, “Want a bagel, please?,” which might have seemed weird to the other patrons. But for Leo, re-asking is a form of self-soothing and processing — he really wasn’t going to get a bagel immediately, that sucked, and he needed to deal. And he did! Eventually our food appeared, I sat down, and we all enjoyed our treats. Successes:

  • Leo waited calmly for a highly-preferred food item, and did not tantrum.
  • Leo accepted that another highly-preferred food item would not be coming his way, even though he could see it right there in that display case.

Leo and I became a dynamic duo later that afternoon when the rest of our family scooted to a Daddy-Daughter hootenanny. I decided to treat him to his favorite Indian restaurant, where he did a giggly happy dance of anticipatory “naan bread” joy. (His audible glee lasted only a few seconds and wasn’t too loud; if he had been disruptive to other patrons, we would have left.) Leo stayed with me as I pillaged the buffet, asking me for naan every thirty seconds. I reassured him each time that he could have his naan — but not until we sat down. He remained calm. Once we sat down, I tore off pieces of the naan bread and handed them to him instead of letting him have his own plate. My behavior probably appeared odd and controlling — a helicopter mom hand-feeding her chubby son — yep, that family’s got some food issues. But there was actually a lot of work, progress, and practicing going on, for those who knew what to to look for. Because every time Leo ate a piece of naan bread, he saw me dip it in my saag (spiced spinach puree) first. Our boy, who usually eats only six foods, but has been working hard on tolerating other tastes and textures, watched me put a non-preferred food on his beloved naan. And he still ate every single piece. Happily!

He then asked for mango ice cream. Since dessert is included in the buffet, I got him a bowl of the orange stuff. He tidily ate the entire thing himself, with a spoon — a challenge for a boy with fine motor issues. Successes:

  • Leo did not try to snatch naan bread from the buffet.
  • Our dietarily self-limited boy is now eating a spicy Indian food.
  • Leo used a utensil to feed himself a whole food portion.

Next I took Leo to get his beautiful but too-shaggy moptop trimmed. He let the stylist cut his hair, without any significant behaviors. Initially, he squawked and fidgeted — which I’m sure drew quizzical glances from other patrons — but once I brought out his iPod touch and held it so he could watch a favorite video, he settled down. The stylist could then chop off his luxuriant glossy curls, and buzz a clean line around his ears and neck. Successes:

  • Leo did not scream and cry and try to escape from the stylist’s chair.
  • Leo did not need to sit on one of the playground-style kiddie chairs. He sat in a regular chair.
  • Leo did not require a lollipop or other food item to comply.
  • Leo did not jerk his head around so violently that his hairline looked badger-chewed.
  • Leo was able to focus on a video during the session, and sit extra-calmly.

Leo, with his family’s and his team’s support, is still working on a lot of challenges. But I hope my description of these four episodes’ successes helps people appreciate kids like Leo under similar circumstances. I hope that instead of thinking, “Why is that kid behaving so strangely,” people will start to ask themselves, “I wonder just how hard that kid is working?” Because I bet you anything, those quirky kids — they’ve worked their tails off, just to be able to leave the house and appear in public. In Leo’s case, the goal isn’t even to blend in, but rather to be able to grocery shop, eat in a restaurant, go to the park, or get a hair cut without disturbing anyone else, or causing a major incident. We got through our entire day without having to abort a single errand — quite an accomplishment for such an easily overwhelmed boy. I hope, after reading this, you’re as proud of Leo as I am.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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