For the past two weeks, I’ve had writer’s block (blogger’s block?); the light bulb in my head seemed burned out—temporarily at least. Starting each day by reading endlessly depressing newspaper headlines (including the longest government shutdown in history for the most ridiculous reasons) ON TOP of trying to help my adult daughter with autism in her 29th year navigate a meaningful life, has left me totally exhausted.
What is so exhausting? The accumulation of a million tiny daily incidents, in the context of a federal government that’s scarily broken. In the life of an autism mom, a minor glitch at the dinner table can cause a protracted emotional explosion. For my family, our last dinner upset began innocently enough, with a discussion of necessary life skills. But we quickly veered into dangerous territory: the necessity of cleaning the kitchen sink to avoid roaches, which prompted Samantha to ask: “What’s the difference between roaches and bedbugs?”
Before I could explain, Howard choked on his bite of chicken. “Could we please NOT talk about bugs over dinner?”
But Samantha, who often struggles to participate in dinner conversations thought she’d asked an excellent question. She didn’t understand her father’s visceral reaction to discussing vermin while eating.
“Why is he shutting me down?” she asked. “That was a perfectly good question.”
As Samantha defended her right to ask a question about bugs at the dinner table, the tone and decibel level of her voice zoomed upward, while her vocabulary plummeted, deteriorating to the level of a street thug.
Howard, who’d worked a long day at his law office, retreated to the bedroom to eat his apple for dessert.
I was left to explain WHY talking about bugs could be unappetizing and inappropriate while eating. Frustrated and unhappy, I wasn’t in the mood to discuss bedbugs or roaches. Nor was I inspired to explain why it’s okay to defer a discussion about insects, but not okay to turn our family dinner into a war zone or be disrespectful to her father. (Sigh.)
This kind of misunderstanding, and the battles that ensue, repeat themselves over the years in a million different situations. Anyone who has read My Picture Perfect Family – What Happens When One Twin Has Autism will recall my daughter’s obsession with soda and her hatred of ice. For years, every restaurant experience was fraught with tension. I’m still walking on eggshells too often. I work hard to avoid conflict or deal with it successfully when it’s unavoidable. Exhausted from being the eternal peacemaker in my family, I need a rest.
That got me started thinking about all of the aging autism parents like Howard and me, now in our 60’s and 70s, who won’t be retiring from care taking our adult kids anytime soon. If retirement is not in the cards, then a break—as a reward for work well done—becomes a necessity.
Older parents of adults with autism should be able to plan a sabbatical from managing their offspring. We need a rest from worrying about the future too. These days I’m longing for more than an hour of respite at the gym, movies, or lunch with a girlfriend. What about a paid sabbatical? (Crazy, I know, but just thinking about it helps).
Maybe there could be some version of Canyon Ranch for autism families? How about a spa that provides pampering and upbeat (but realistic) education about how to better handle adult children with autism? What if the spa sent autism parents home with savvy advice on lowering stress? What about short essay writing and improv classes for parents who want to share and reframe their experiences? Maybe we could laugh more, cry less, and find opportunities to make new friends. Dealing with the challenges of a child on the spectrum can be lonely (in addition to tedious and exhausting).
A cruise to exotic, faraway lands would be delightful. I’m not talking about the kind of cruises that cater to families of young children with autism and offer excellent kiddie programs and safety features. Nope, I’m looking for an adults-only cruise for weary autism parents who want a complete getaway. Maybe there could even be a trained person on board who could handle phone calls and minor problems of autistic adults so parents have an uninterrupted rest?
I dream that one day there will be travel agents who can plan these kinds of trips. Depending on the interests and budgets of autism parents, I can imagine special weekends in Las Vegas, the Caribbean Islands, camping, biking and ski trips.
We love our kids with autism every bit as much as parents of neurotypical kids. But we worry far more about what will happen to them when we’re gone. I know my neurotypical son will work, get married and have a family.
But what about Samantha? Who will love her when her parents are gone? Who will protect her from financial and emotional predators? Can we autism parents help our sons and daughters become as independent as they yearn to be and still live safely in the world? Years fly by without any answers to these questions. Meanwhile, the emotional and financial stress created by these painful uncertainties continues throughout our entire lives and only increases as we age.
If only there could be vacation allowances (or tax deductions!) for parents who are life-long caregivers. Until then, sixty-something autism parents need to set aside some time and money for themselves. Carpe diem!
Previously Published on margueriteelisofon.com