With the recent celebration of our nation’s Independence Day full of patriotism and fireworks, I began to consider another form of independence. My mind sparked to autism as it often does in a variety of scenarios, places, occasions or dates. My thoughts rarely take a holiday from autism. So why should the 4th of July be any different?
Independence is a word with a variety of definitions per se. We all strive for it at various times and places in our lives, time and time again. By definition, independence is the state or quality of being independent with freedom from control, influence and the like. The translation often depends on the trajectory of life. Life with autism has its own ideas regarding the delineation of independence. It’s as varied as that jumbo box of fireworks purchased for the big celebration, resembling anything from a bottle rocket to a sparkler, smoke bomb or a roman candle. And everything in between. Each as unique and numerous as the patterns and colors that light up the night on July 4th.
If I’ve learned anything about independence it’s this: at times my perception conflicts with reality. And controlling independence is not true independence. A lesson I’ve been privy to time and time again. I know that as beautiful as fireworks can be, there is an element of danger. Yet at times I’ve been caught off guard when they go off suddenly or fizzle out, failing to show their brilliance. Lighting the way towards independence can yield some similar surprises.
When you are the parent or caregiver of someone with autism, often your own independence takes a back seat. And in our best efforts to be all our children need we can also lose sight of their independence as well.
For example, how often did I assume my son’s autism would be a deterrent to his independence and erroneously take away his ability to exert his own autonomy? It’s so easy to do rather than watch someone struggle with a situation or task you can so easily rectify.
Classic examples for me began when Jonathan was little and often included things like dressing him, brushing his teeth, combing his hair or folding and putting away his clothes, packing his backpack, making his lunch and his bed, picking up his toys or videos etc. Then one day as I was impeding his independence yet again it dawned on me—how was my son ever going to learn independence without giving him opportunities to do so? The firecracker went off and I realized it was time to embrace his Independence Day.
Granted it may seem like the obvious but gradual release of responsibility is a leap of faith. It’s also about freedom. Pursuing one’s own path to independence is liberating and freeing, but also comes with responsibilities and risks. Just like that box of fireworks.
When I began fostering Jonathan’s independence it was pretty easy. Letting him pick out what he wanted to wear, giving him chores like taking out the trash, emptying the dishwasher, etc. Onward and upward to riding his bike around the neighborhood (in my line of sight). Going on outings without me present, making his breakfast and lunch, learning to use his debit card― each step furthered progress towards independence. Let freedom ring!
Then you realize freedom and independence aren’t always so effortless, especially as our children get older. My anxiety levels increased when Jonathan entered middle and high school. My concerns were for his safety and given the numerous accounts of school shootings, bullying and predators my fears were legitimate. Jonathan could still be independent but his awareness regarding safety was entirely dependent on those around him to keep him safe. Unable to recognize or respond to the dangers of someone with intent to harm him would make him an easy target. To this day it remains my biggest fear and the biggest obstacle to his independence. It’s something I continue to work on— both for him and myself.
Watching Jonathan assert himself where and when he can has been a parade of emotions. Similar to the beauty of a fireworks display on July 4th. So many oohs and ahhs, never knowing what array of pinnacles will follow. Careful not to get too close and view from a safe distance. Preparing myself for the inevitable loud explosions that often accompany the beauty and remembering they are a part of what we celebrate. Knowing I will never tire watching the illuminations that independence brings time and time again.
And that for my son, each day brings new opportunities for his own Independence Day.