By Burt Constable
Blessed with health, good jobs, lots of energy, the experience of seeing their six daughters grow into happy, productive adults, and the desire to do something to make the world a little better, Bob and MaryAnn Ogilvie of Schaumburg jumped into a second parenthood in their 50s by adopting an adorable little boy from China in 2005.
"Every time I go to bed, my parents repeat the story," says David, now 20. "A long time ago in a far-off land …"
After that, well, the story veers off in directions no one could have predicted, with many challenges that continue today.
"David was an abandoned child, so there's no family history," Bob says, noting David was between 1 and 2 when he was dumped on a street and ended up in an orphanage in Hohhot, the capital city of Inner Mongolia in the northern part of China. Having met a couple at Willow Creek Church in South Barrington who were older when they adopted children from Russia, the Ogilvies first learned of David during an informational meeting of Children's Hope International, a faith-based adoption and aid agency. The Ogilvies were told only that the boy was 8 years old, maybe 7, had undergone open-heart surgery at some point in his young life, and needed someone to love and care for him.
"We had just become empty-nesters and we said, 'What do we want to do now?'" Bob says.
"Do we buy a summer house, get a motor home, travel the world? We wanted to do something meaningful," says MaryAnn, who pondered the purpose of life in a group at Willow Creek Church, which the family still attends.
"We both had a lot of energy," says Bob, who was 54 at the time and working as a manager with the company where he used to operate a crane. MaryAnn was 52 and working as a physical therapist at Northwest Community Hospital. Now 64, she is a manager. Bob, now 67, took early retirement from his job to stay home with David.
Knowing the problems caused by the language barrier, the Ogilvies hired a tutor who spoke Mandarin. But David didn't do well in second grade. He didn't understand much Mandarin. He acted out in class. When it was discovered that David suffered severe hearing problems in both ears, his parents got him hearing aids.
"OK, problem solved," Bob remembers thinking. One problem was solved. More on the way.
An attempt to help David make friends and fit in through youth baseball failed instantly.
"I got hit right in my arm. I ran after the pitcher with a bat and I got kicked out," David says.
His parents thought he must have post-traumatic stress disorder after David told them stories of dead babies at his orphanage being carted off to an incinerator. After years of struggles trying to understand all the issues with academics and behavior, the Ogilvies learned that David had a developmental disability that left him with an IQ far below normal, brain damage from malnutrition in his first years of life, and a bi-polar disorder.
"It's like Ping-Pong. Every time we hit the ball over the net, it comes back with something else," Bob says. "We never look back. We just keep trying to make the best of the situation."
"And now I have reflux," chimes in David, who underwent testing on that gastroesophageal issue this week.
David was an 8th-grader at Robert Frost Junior High when he transferred to Miner School in Arlington Heights, an alternative school run by the Northwest Suburban Special Education Organization. He spent his senior year in high school at the newly built Higgins Education Center, a similar school in Hoffman Estates. Now he is part of a transition program at that school, learning skills that allow him to work in the cafeteria this summer. All those programs for young adults with disabilities end the day before a client turns 22.
As they have since the day David stepped off that plane at O'Hare, the Ogilvies are consumed with trying to do what is best for their son.
"There's no playbook. You just have to claw your way through that," his dad says. "And there are a lot of Davids."
Advocates for their son and others, the Ogilvies are fluent in the alphabet soup of Illinois bureaucracy from CILA (the Community Integrated Living Arrangement program of group homes for individuals such as David) to PUNS (Prioritization for Urgency of Need for Services, the statewide database of people with developmental disabilities who need services). In the most recent report from April 2017, the Illinois Department of Human Services moved 917 people off a PUNS waiting list of 19,354 people.
"Unfortunately, their son is not unique," says Meg Cooch, executive director of The Arc of Illinois, an advocacy group for individuals with intellectual and development disabilities, and part of an umbrella organization known as the They Deserve More coalition. "There are still people waiting five or more years for services."
The Illinois budget passed by legislators Thursday and expected to be signed by Gov. Bruce Rauner includes a 50-cent-an-hour raise for direct support professionals (DSPs) who care for these people in community settings and currently have an average starting pay of $10.59 an hour, according to theydeservemore.com. A related bill would establish six new "diversion homes" and could help someone such as David, whose occasional need for the psychotropic drug Thorazine has kept him out of existing group homes that require legal guardians or health care professionals to administer those drugs.
As his parents explain the issues facing people with disabilities in Illinois, a smiling David jumps in with a joke, a memory of the first movie he saw ("'Wallace & Gromit.' I didn't like it.") or tales of the fancy footwear he gets only if they are on sale ("I do like my Michael Jordan shoes.").
"After raising six, we thought we had seen everything. But we had missed a few things," Bob says.
"We keep trying," says MaryAnn. She teaches 24 three-hour classes a year as part of her volunteering with the National Alliance on Mental illness Barrington Area chapter. David volunteers with a program for 4- and 5-year-olds at church and walks his neighborhood handing out free vegetables from their garden. "I'm always thoughtful," David says.
For all of his issues, David explains why this often-difficult journey has been worth it for him and his family.
"Every kid," David says, "needs a home."