beach

10 April 2013

Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.

SONY DSCWho thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

6 September 2012

It Had to be Done: Outgrowing Disney

In the end, we just couldn’t face it. Heat, lines, crowds, food, money. Too much. We’ve done our time in the Land (favorite thing ever: The Casey Junior Train, below) and the World and we figured if we went back we were setting patterns that would be the undoing of us, psychologically and and financially. It was the best decision we ever made, vacation-wise, even with the hurricane. We did not want to spend our few days together in theme park survival mode (and I fully admit that this is my problem, this crowd phobia) and we found a destination where everyone found their own space; in the the water, on the shore, sun and shade, together and apart, quietly. That, in large part, was what this end of summer jaunt was about – all of us developing a better sense of where our limits are and stretching them gently in the right directions, and coming to rest, together, at the end of each day.

It was the first vacation in a long time from which I returned not needing a vacation. Under the best of circumstances vacations can be stressful, and for many families with kids on the spectrum, traveling to unfamiliar territory can be daunting. And while we shy away from overly urban adventures we have still a managed to traverse St. Louis, Washington, D.C., New York and Los Angeles, partly by recognizing that animals and swimming must be on the itinerary.

Life is too short to go to too many of the same places twice. And I have to think that, because we needed to travel for family reasons when our kids were small, the rituals of airports and hotels were ingrained early and we are proud of the way all three of them rise to the occasion, time and again. The fun can bring stress (the TSA, packing special food, meds and myriad devices with their correlating cords, headphones and chargers) but this summer proved at last that sometimes, it’s just fun.