In the early years after my son’s autism diagnosis I prayed some person or organization would hoist autism from obscurity into public consciousness.
More than two decades later, WCCO-TV has helped answer that prayer with its Pulling Together community outreach event.
Blending fun and fundraising into what’s being hailed as an “epic event,” Pulling Together will generate funds and awareness for Fraser, Minnesota’s largest and most comprehensive provider of services for people with autism and their families.
At St. Paul’s Hidden Falls Regional Park teams will engage in a tug of war across the Mississippi River. Competitors will try to stay out of the water, just as families living with autism strive to stay afloat every day.
St. Paul will battle Minneapolis, with support from outside the metro. Pearson Candy Company will lead St. Paul teams, comprising competitors representing the St. Paul Police Department and Minnesota Wild, for example.
Central Roofing Company will lead Minneapolis teams with Minnesota Twins and Minneapolis Police Department representatives, among others.
While teams must raise at least $10,000 to compete, even those without buffed biceps can participate through online donations.
As a Fraser board member and parent of a Fraser client, I’m delighted, excited, and grateful.
Operating from six locations around the Twin Cities (and with a Woodbury location in the works) Fraser offers thousands of families a one-stop shop that didn’t exist when my family was looking for answers and strategies years ago.
Services run the gamut, from neuropsychology to applied behavioral analysis; speech, art, and music therapy; medication management; help with activities of daily living; counseling for trauma or anxiety; and more.
Whether clients participate in preschool, day programs, friendship groups, or career planning, the goal is to tease out strengths and develop effective strategies.
Early diagnosis and intervention are vital. But for the generation of parents who rode the wave from 1-in-10,000 to 1-in-68 with autism, the needs change, though the worry remains.
Parents of adults with autism aren’t scheduling speech therapy sessions. They’re wondering how their 6-foot child in diapers will transition from the public school system to a more unprotected world; how to shield their vulnerable daughter against pregnancy; and whether anyone will give their son who memorizes baseball trivia an interview, much less a job.
If we’re good planners we’re pondering who will care for our loved ones when we are gone. We’re grappling with how – and if — our guys can be taxpayers instead of lifelong recipients of taxpayer-supported services.
Each family defines success in its own way. I’m watching adult children become artists, employees, and volunteers. I’m seeing relationships form with peers or family members, debunking the notion that people with autism can’t make emotional connections, as I was told decades ago. I’m watching late-bloomers find their stride.
Fraser’s funding comes from a variety of sources: grants, private insurance, and as recently reported in the Pioneer Press, complex Medicaid programs. With ever-changing regulations, and uncertainty about health care, nothing can be taken for granted.
So Fraser turns to donors to sustain its mission of ensuring Minnesota families can access services within 35 minutes or 35 miles.
It’s an ambitious mission.
With each change of leadership at both the state and federal level, each change in legislation or regulation, CEO Diane Cross and her team must assess how they can best meet an array of needs for thousands of clients and, if needed, retool.
Businesses deal with uncertainty as a matter or course. People pivot daily to deal with the unexpected. We change jobs and partners. Life goes on.
But an autism diagnosis is complicated. Autism endures because, as my son reminds me, autism is not cancer. It’s who he is.
And so the challenge for parents is to find the best resources for our loved ones to leverage skills, confront barriers, and push for society to accept that regardless of social, economic or ethnic background -and developmental challenges — we all have hopes, dreams, gifts, and limitations.
As his only parent, I count on the Fraser safety net that stretches from the leadership team to the direct support professionals to support my son in the apartment where he lives among neighbors who may be oblivious that adults with autism are even there.
Parents like me use our resources, gumption, talents, and our remaining energy to make the world a bit better for both loved ones and strangers for whom many days feel like a tug of war.
I want to believe that awareness breeds acceptance and generosity; that awareness motivates a parent with a gnawing concern to schedule an evaluation; that awareness leads to charitable giving, which, in turn, enables Fraser to hire more staff to cut waiting times for diagnosis.
So during this month, when autism is in the spotlight, I’ll shine a light on four sides of this Rubik’s cube in a series of columns. Armed with information and insight, I hope readers will be a bit more compassionate toward the exhausted mom in the checkout line whose kid needs more than a good dose of discipline. And maybe even choose a St. Paul team to support on June 10.
Caryn Sullivan of Eagan, an inspirational speaker and author of “Bitter or Better: Grappling with Life on the Op-Ed Page,” writes an occasional column for the Pioneer Press. Her website is choosingbetter.org.
