Autism, Mothers and the Great Gift of Planning
This piece originally appeared in the St. Paul Pioneer Press on May 13, 2018.
One in 42. That was the prevalence of autism in 8-year-old Minnesotans in 2014, the CDC recently reported, compared to one in 59 nationally.
So for an awful lot of moms, “our day” triggers a constellation of emotions: sadness, hope, guilt, fear, pride, angst, and optimism.
Among my brood is an adult son who was diagnosed in 1993, when autism was a mysterious diagnosis met with uncertainty, shame, judgment, and emotionally charged debates over causation.
As one who loathes ambiguity, I begged for clarity from professionals who had no crystal ball.
What would the future look like? Would Jack drive, attend prom, and have a traditional career?
When he was in high school I reluctantly accepted those questions wouldn’t be answered as I’d hoped.
So Mother’s Day can be bittersweet as I contemplate my relationship with my firstborn.
Having a child with special needs brings a different type of rewards than I experience with the rest of my brood. I’ve discovered a child with special needs can bring unusual and unexpected blessings and gifts, including insight and appreciation for small stuff.
With Jack I celebrate accomplishments that are unremarkable for people whose minds develop more typically, whose lives evolve more predictably.
These days I find joy when Jack texts me a photo of his newest niece, saying, “I can’t wait to kiss her.”
I share his excitement for his new job, the first with a W-2. He’s eager for a purpose and a paycheck. He wants a separate bank account just for earnings that, while meager to most, will be monumental for him. And that makes me smile.
The joy in those little moments deflects the heartache and envy that can stubbornly intrude upon a mom’s psyche.
Parents of the one in 42 don’t post photos of kids sitting at home on prom night. They may read others’ posts with longing and envy.
Parents of the one in 42 don’t plan their kids’ weddings.
I worry about a host of things, some within, some outside my control.
How will Jack stay healthy? His DNA includes some bad genes – my cancer and his dad’s fatal heart condition –and he prefers to be sedentary. So I nag. Is he eating right, exercising, and limiting his computer time?
Will the Medicaid waiver that helps Jack to live in an apartment with support from paid staff continue for his lifetime?
Will there be enough workers to support people like Jack for relatively low pay?
Whenever life goes in unexpected directions, we must pivot. That’s especially so when you have a child who won’t follow the normal trajectory: high school to college or vocational school followed by employment and, optimally, a home of his own.
When life goes in unexpected directions we cannot remain entrenched in the dream of what might have been. We need to be partners in a different search, for we might discover a penchant for art instead of accounting.
But when life goes in unexpected directions we must do more than pivot. We also must plan, for our kids become adults. And a growing number of people with extraordinary needs, be it autism, Down syndrome, or cerebral palsy, will require housing, medical care, transportation, and support by caregivers for a lifetime.
I’ve pivoted and planned. While neither is easy, planning is far more challenging than pivoting.
Most Americans don’t have a will or proper estate plans. Most parents of kids with special needs don’t take steps to establish guardianship and special needs trusts. Why?
Grappling with such decisions is difficult.
We don’t think we’ll die any time soon.
And, to utter the unmentionable, if the special needs child dies first, then the really difficult decisions can be avoided.
When you have a child with special needs there is an overarching concern that persists at the edges of one’s consciousness.
Who will care for him when I’m gone?
Who would be as committed and devoted to him as me?
Who will be his champion and guardian?
Who will ensure he sees the right doctors and has enough money in the proper accounts?
There are no easy answers. But succession planning cannot be dodged.
In the decades since Jack’s diagnosis I’ve attended scores of meetings in which we develop and assess progress on independent living and employment goals, mostly short-term. Long-term planning isn’t part of the conversation.
But it must be.
Families must be as concerned about and focused on long-term as short-term planning. It’s a disservice to our children to postpone the discussions until we’re no longer lucid or simply too weary to engage in them.
It’s a disservice to relinquish decision-making to the courts because we failed to establish guardianship or designate successor guardians or to ensure that assets are properly protected.
Aside from loving them, there’s little that’s easy about raising a child with special needs. But part of the social contract is that we attend to their well being from cradle to grave.
While we surely enjoy precious moments of joy, mothers (and fathers) make lots of sacrifices for our loved ones with special needs. Mired in the day-to-day we take a hit on relationships, careers, and our own health. But we’ve got to dig even deeper and grapple with the really tough stuff. For there is no greater gift for our loved ones than to ensure they are well cared for after we are gone.