Julia Steiny: A child with mental-health hurdles needs a team effort
01:00 AM EDT on Sunday, September 21, 2008
Cathy Ciano has known just how miserably isolating modern parenting can become.
Currently, she is the executive director of Parent Support Network of Rhode Island (PSN), a statewide support and advocacy organization run by and for families of children and youth with mental-health and behavior challenges.
But 11 years ago, she was one of PSN’s moms desperately trying to find help for her two sons. She’d been wrestling with medical professionals, schools, police, social workers, foster care, group homes and hospitals, always one-on-one. She says, “No one from the child-serving sector talked to each other.”
Ciano was young when she married, and had two sons. That marriage dissolved early on, in part because of the dad’s then-undiagnosed mental illness. While healthy herself, Ciano’s extended family also has a history of mental health issues. But who thinks about that when you’re young, invincible and facing a bright future?
When her oldest boy was 6, doctors diagnosed him as clinically depressed and put him on an antidepressant. Ciano says, “When he was 16, he was finally correctly diagnosed with bipolar disorder. You can’t treat bipolar with antidepressants alone. You need a mood stabilizer. Antidepressants made him manic and violent. He’d break furniture. He was totally out of control. So they’d put him on another med, and then another. Even he knew something was wrong with him, but the meds were making him sicker. Eventually, we put our foot down with the doctors. The professional response was that we were resistant and noncompliant. We were the problem.
PSN believes that the parents are the experts on their children. The professionals bring their expertise to the table, so the key is how parents and professions partner with one another.”
Alas, the younger boy also started showing similar symptoms. Ciano had married again, and together they had two children. Managing the family nightmare was Ciano’s 24/7, double-shift, full-time job.
Bitterly she notes that the school once called and said, “Hi. I don’t know what’s going on in that house of yours, but we can’t educate your son. What type of discipline do you use? Because it’s not working. You have to give us some discipline help.” As if Ciano and her husband weren’t desperately trying to discipline the children themselves. She says, “It was just blame, blame, blame the family.” You can’t punish mental illness out of a child.
At 10, the younger boy was arrested for the first time, after breaking windows with another kid, to the tune of $3,000. By 12, Ciano felt like she was losing him.
Psychiatric hospitals won’t take a child unless he is a danger to himself or others. That’s the criteria to get critical care. Seriously ill doesn’t cut it.
When that child was 14, a social worker told Ciano that really nothing could be done until he got arrested.
This has been our “system.” We wait until the damage is profound. Everyone knows that handling problems early on, before they fester into full-blown illness and arrests, is infinitely better for the kid, the family and the community not to mention way cheaper. In all fairness, states across the nation have been grappling with ways to get more investment at the front end, so the problems don’t become big and expensive. But prevention is a hard sell. No one wants to pay for “at risk.” Such a discretionary line item is easily cut from stressed budgets.
As a result, America’s largest mental-health wards are its prison systems.
Sure enough, two weeks later that child did get arrested and sent to the Training School. For years he cycled through the Training School, psychiatric hospitals and residential care. In the end, he was profoundly addicted to drugs and alcohol, and unprepared for living in a family structure. In the words of the child himself, “When you live in an institution they don’t teach you how to live in a family.” Institutional life is very artificial. “I’ve been asking permission to go to the bathroom for years.”
Institutionalizing children out of sight and out of mind is no long-range solution. Furthermore, as Ciano says, “Without a team approach, it is completely up to the parents to fight, fight, fight.”
Those boys are grown now, and living independently, thanks largely to her and her husband’s persistence on their behalf.
Ciano has given her life to helping parents. She and the PSN passionately advocate for a “high-fidelity, wrap-around, care-planning process,” a bureaucratic mouthful that basically means a team approach that empowers and collaborates with families. (See http://www.rtc.pdx.edu/nwi/ for details.) She’s delighted that Rhode Island is moving precisely in that direction with its new Family Care Community Partnership (FCCP) initiative. Still, it will take years to institutionalize the practice of partnering respectfully with families and caregivers. Currently, the Rhode Island budget crisis is forcing social services to make better use of the available “natural” resources, which means families and their communities.
“If that approach had been in place for me, back then, I know not I think, but I know that my families’ lives would have gotten on a better track much sooner. It could have prevented the Training School, the residential care. This new initiative is about doing things very differently.”
The PSN’s toll-free number is (800) 483-8844. Parents raising children with challenges should feel free to call.
Julia Steiny, a former member of the Providence School Board, consults for government agencies and schools; she is codirector of Information Works!, Rhode Island’s school accountability project. She can be reached at firstname.lastname@example.org , or c/o EdWatch, The Providence Journal, 75 Fountain St., Providence, RI 02902.