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Weathering The Storms of Life With Autism

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In many ways life with autism resembles the weather. Some days are bright, beautiful and sunny, others are dark, cloudy and foreboding. There are cold days, hot days, wet, dry and everything in between. At times the weather can be downright nasty and unpredictable. Such was the case for me Sunday morning. A storm had formed on the horizon without warning—one I never saw coming but upon arrival left some devastating consequences and destruction all its own. 

As with most storms, once the winds settle and the rains subside you’re left to assess the damage. You begin the clean up, salvaging what you can and counting your blessings. In the aftermath you wait for the skies to clear and the sun to shine yet again. Always aware that at any time those dark skies can and will return, sometimes when we least expect it. Sunday was one of those days. 

As many of you know my son is 28, autistic and has an intellectual disability. Caring for his past, present and future has made me my own meteorologist of sorts. Trying to predict, prepare and even evade unpleasant encounters and outcomes. For the most part my radar has been pretty reliable and I’m getting better at detection. Advocacy is my weather map so to speak and the winds of change come often, challenging my radar, abilities and the presence of things out of my control. Even the best laid plans are no match for the unpredictable forces of nature as I was reminded yet again. 

So despite all my best efforts a funnel cloud appeared without ever making a blip on my radar screen. Touchdown occurred in the form of an email from Jonathan’s waiver support coordinator. I never even heard a siren.

For quite some time I’ve been navigating residential housing for Jonathan. Honestly at times it’s felt like being in the basement with the tornado sirens going off. You can’t see what’s out there but you know it’s coming. Will you feel its impact or be fortunate to escape its wrath? Will you be in the right place at the wrong time or the wrong place at the right time? You hunker down, hold on tight and keep the faith. Not knowing is the hardest part of all.  So as I’ve been riding out this latest storm waiting for it to change direction it’s with similar feelings. Apprehensive about what I will find for Jonathan and at times leery of the outcome but through it all maintaining faith. Relinquishing my part of the forecast isn’t easy, but I’m doing my best to remember I can’t control the weather, even in the best of circumstances. All I can do is utilize what information I have so we are prepared for whatever comes our way.

That is until Sunday’s email. Oddly, it started out sounding so promising. A client was leaving their residential housing. A large master suite with its own private bath was becoming available and our support coordinator immediately thought of Jonathan. That’s when the F5 hit—the reply from the APD Housing Coordinator. Without any warning or explanation, they informed her that Jonathan’s referral for housing had been closed, but she could feel free to reapply. Then we could begin the process again!

As I read, I felt the breath knocked out of me, waves of shock and outrage. It was as if the warning sirens had gone off just minutes too late. We had no time to prepare or take cover. I just watched as Jonathan’s future home was picked up and carried away somewhere else, never to be seen again. Everything we had worked so hard to secure had just been flattened in an instant. I felt crushed by the weight of the words and my own storm clouds of anger began to brew. At that moment all I could think was my weather planning days were over. 

Then today I woke up and realized the storm had passed and I was still here. A little bruised and battered, but still here. Perplexed and a little pissed by a hit I didn’t see coming but still standing. I had weathered yet another disturbance coming back resolute and with renewed fortitude. It was time to start anew, pick up the pieces, rebuild and move on like I have done so many times before.

As I walked into Jonathan’s room and was putting his laundry away, there it was right in front of me. Like the first ray of sunshine that breaks through the passing black clouds after a storm, a plaque with an important message.  One that has hung on Jonathan’s wall for many years.  Reminding me storms will always come and go but ultimately it is I who will determine their impact along the way. The plaque reads:

“Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain.”

If life with autism has taught me anything, it’s that I’m an accomplished meteorologist– both on and off the dance floor. 

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