I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.
Recently I’ve felt the need for a more specific vision around early adulthood. The countdown to adulthood begins early for kids who need lots of time to learn and prepare. It’s time to make tough choices about skills and goals. Where should he spend his time and effort? Is it important that he learns to read, or is it a better use of his time to go the store where he can practice social greetings, handling money, and navigating his neighborhood? This kind of parenting isn’t for the faint-hearted.
I have been riding with no hands when it comes to special needs parenting for some time now, ever since our huge move has had my attention elsewhere–getting a job, a place to live, a dog, converting recipes into metrics and Celsius. With so much to take in, I took my hands off the handlebars, trusting that the people around me would keep us safe (a correct hunch), that my mom detectors would sound even if 99% of me was caught up with figuring out the recycling rules of my new homeland, that I would take the handlebars again when it was time.
We have been in crisis. And I am good at crisis. As a parent of a child with special needs, I’d have to say I feel comfortable there. After years of wishing to be done with the drama of crisis, recognizing a pang of nostalgia for it makes me stop and think.
It’s not Groundhog’s Day here in Sweden but that won’t stop our family from the annual viewing of the Bill Murray classic. Tonight we’ll snuggle on the sofa while Bill awakens to Sonny and Cher for about, according to the DVD comments, 1000 years or so, reliving the same day until he gets it right. When I first saw the movie years ago, it was merely a funny, clever film with wry Murray wit and all that Andy MacDowell hair. Over the years it has become a story of engagement.
I think sometimes we special needs parents are getting the wrong message. We’re told that if we want to be effective, we should be the mama bear — fierce and protective. Or the victim, sad and pleading. The course leader’s parable reminded me that I have other options, ones that actually might be more effective than anger or sadness.
A guest post from Elizabeth, mom of two. “Creating my map helped me reconsider my own role in my son’s care plan. I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management. The exercise allowed me to step back and view Charlie’s system of care with new perspective. I found comfort in all these little circles, each representing a different system working to support my son and our family.”
It struck me that being in the fun house was so like my experience of parenting a child with special needs, especially in a new country. Looking from the outside in, the recognizable elements are there: the kids, a school, a pediatrician, the toys, the hopes, the dreams. But take a step in and the floor starts to shake.
Several years ago I heard a radio interview with a devout Jewish woman who had a practice of laying prostrate—face down on the ground, arms outstretched. She said she did it to remind herself that she was not in control of every little thing. She was in God’s hands.
In other faiths too, the act of laying oneself down is one of humility or surrender. While I might not share the beliefs from which this tradition springs, I do appreciate the value of acknowledging that I am not always in control.
Finally! I’ve been promising a “how-to” guide on care mapping for the last few weeks, and it’s finally ready.