Today on the train home to Bakersfield I was having one of those soundless, no facial expression changing cry fests.
It had been a rollicking three days: one in Sequoia and two in Disneyland/California Adventure and I had to let go of some of those emotions that had stayed safely tucked away while waiting on line or cheering the children on or laughing or screaming.
The rules of parenting a child on the autism spectrum are all quite clear: to keep your child's behavior calm, predictability is paramount.
I have taught Samuel for years the only thing he can ever expect is the unexpected. Some things MAY be predictable, but he needed to know the biggest most important "rule" (folks on the spectrum live by rules and rituals) is life is unpredictable. Sometimes the best we can do is move forward into what seems really scary and be happy because people who love us are either right there or nearby.
Samuel’s defining Disneyland moment: we were waiting in the Fastpass line at Space Mountain, Emma’s favorite ride. Samuel had crushing anxiety, asking if it was totally dark, if there was solar system stuff in there because he "hates the solar system", does it go too fast… and on and on and on. At one point he bravely wiped tears away with his arm. I could tell Emma was dangerously close to just giving up her favorite ride experience if it would make her beloved brother feel better.
I knew the signs well. He didn’t want to let anyone down, least of all himself, but he wasn’t sure he could do it. He climbed into the seat next to me soundlessly. I was afraid to look at him as our rocket ship started the climb up into the stratosphere and as I listened to the countdown, all I could think was, “This must be a sensory nightmare for a child with autism!”
It is noisy, it has flashing lights everywhere, you can’t see where the next move will be: all a spectrum child abhors IS what makes this ride exhilarating for a neurotypical child. Perhaps I hadn't given my child who happens to be on the autism spectrum enough credit.
He and I screamed together for most of the ride. I tried to laugh at one point, but I couldn’t make it sound authentic. I wasn’t sure if I was going to get pummeled or thanked when we were done. I was convinced I was going to take abuse worse than last January when walked out of arms reach when he was taking photos in an unfamiliar section of an unfamiliar cemetery.
When we pulled into the station, he took a deep breath and said, “I want to do that again!”
Space Mountain became his favorite ride in Disneyland. He stayed the course - even though petrified with fear - because he had been taught the only rule was unpredictability and he also knew I was nearby always - even when not physically present my presence was with him.
Nearly every hour – at least – in Disneyland, I was nervous because I wasn’t sure if Samuel would hold onto his anxiety. I didn't know if we would ride one ride too many, if suddenly something would tip him over the edge or what might happen. He did, though, even while chewing his fingernails (and at times fingertips), manage to keep calm.
Each time Samuel has a win every neurotypical child takes for granted, he feels more confident and I take another deep breath of relief.
The life of a mom of a child on the spectrum: loving the best we can, parenting the best we can, hoping as best as we can, praying as much as we can. Sometimes that means allowing our kids to do the same stuff "normal" kids do and allowing them to work through it on their own with us by their side not intervening, however hard that may be for us.
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© 2012 by Julie Jordan Scott
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