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posted: 10/8/2016 5:35 PM

Micro-preemie, older caregiver crises offer a ray of hope

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  • Newborn Eden Keekler is almost obscured by the hand of her mother, Anna. Our story about fundraisers for the family prompted even the help from strangers.

    Newborn Eden Keekler is almost obscured by the hand of her mother, Anna. Our story about fundraisers for the family prompted even the help from strangers.
    Photo courtesy of Anna Keehler


It's easy to forget, in ways big and small, that people really pay attention to our stories. And, especially in these turbulent times, it's easy to forget they can do some good.

Two such reminders:

First, the smaller thing, though certainly not so to the people involved. Staff writer Lauren Rohr wrote of 8-month-old Eden Keehler, who came into this world four months early and weighing 1 pound, 6 ounces -- a "micro-preemie." A fundraiser on Eden's behalf was a success, and one of the organizers wanted to thank everyone involved. I suggested a letter to the editor, but what I didn't expect was how much Lauren and the Daily Herald were credited. Some people, strangers to Eden's family, read the story and simply showed up to contribute. The letter appears online.

The bigger thing, in the sense that it affects more people, was staff writer Marie Wilson's three-part series on aging caregivers of disabled adult children.

The series was spawned by several instances of older caregivers who killed their adult disabled children, and, in many instances, themselves. Those horrendous tragedies, though, led Marie to look for rays of hope in what some view as a trend that could worsen as our population ages.

Part 2 was a profile of a Naperville woman, 57, caring for her 30-year-old son with Down syndrome and deepening depression. Her hope was to get him into a group home where she believes he'll thrive.

On Friday, Marie told the story of JoAnne and Matt Koupal, a Naperville couple spending $240,000 to build an addition to their house to create a group home. The addition would be for the parents, in their 60s, to take a break from the relentless needs of their son Luke, a 24-year-old with autism, eminently sociable, yet almost consumed by a need for structure and routine. Their hope is to find roommates who would fill Luke's social needs while allowing him to stay in the house to which he's grown so accustomed.

One thing that struck me about Marie's series was the initiative that these people showed while living in a state that's struggling: There are 18,671 people with disabilities waiting for help, while Illinois ranks 47th in a report on how states perform in serving residents with disabilities.

Small wonder that the Koupals took matters into their own hands. Their industriousness might even lead to a new approach for the agency helping them, the Ray Graham Association, which a state disabilities director says might be better off not functioning as a landlord. (The agency owns and manages 42 group homes.) Allowing people with disabilities to find their own places to live also gives them more options on how to use their Medicaid assistance.

The series also is a product of Marie's desire to pursue solutions-based reporting. From the beginning of the monthslong project, she says, "I was trying to find things that were going right, even though we live in a state where much is going wrong."

Even in recounting the tragedies of parents killing their children, she found some good. It came in the form of Stephen Boisse, who leads an agency in Lisle for people with disabilities. He lived four blocks from where a 14-year-old with severe autism was drugged and stabbed by his mother and godmother, who then tried to kill themselves.

Boisse saw that as part of a disturbing trend. And he decided to do something about it. Through his agency, he formed the Parents Support Project, a support group for parents caring for adult children. There's plenty of need for such groups, as Illinois is home to 32,732 disabled adults with caregivers who are 60 and older. Operating for only about 18 months, the program has served roughly 225 parents. And while that might seem like a drop in the bucket, it's certainly not so to the people involved.

And that, Marie says, is an important take-away from the series: It's a big help to know you're not alone. I loved the way she described how these courageous caregivers measure progress at the support group meetings:

"Parents leave each meeting feeling, possibly, a little lighter, their worries not lifted but validated, their fears not conquered but understood."

And if we can pass along such a message of hope, that would seem to be a good thing, too.