I never wanted to be a helicopter parent. When my kids were younger, I often responded to their problems with a “mean teacher”, “unfair boss” or “fickle friend” with a well-rehearsed “wow, that must be tough. How are you going to handle it?” This was not easy, mid you; parents want to fix things. But I did my best, and the “hands off” approach usually yielded the best results in terms of self-sufficiency.
But when your child has a mental illness, all bets are off – especially in times of crisis. Although most of the laws in this country deny our family the right to “interfere” in my son’s life, we do it anyway. At least, whenever we can – if we feel we must.
Ben is 33 years old, and was diagnosed with severe paranoid schizophrenia at age 19, after years of chaos and uncertainty. We tried letting him “experience his own consequences” for years before that, with results that were ineffective at best, disastrous at worst.
If you live in our town, you might know Ben now as the best server in a local restaurant, where he has worked for nearly two years. He’s also the one presenting his latest poetry in community college Creative Writing class. You might see him at Starbucks, just hanging out with his morning coffee, or doing karaoke or bowling with friends. But, not that long ago, he’d have been the one wandering the streets, or the halls of the psychiatric unit at our local hospital – unreachable, glassy-eyed, talking to his voices.
How did he get from hospitalized to hired? I give Ben a good deal of the credit. He got there in baby steps, and kept reaching higher. But, to be totally accurate, our family gets credit too, for insisting upon treatment and “interfering” each day to supervise until, as in the guiding grip when your child is leaning to ride a bicycle, we feel we can fairly safely let go. We strike balance – or try to – every day. Do we “let” Ben purchase a used car? Handle his own finances? Do we wake him for school or let him experience the consequences of oversleeping? These decisions are small compared to the big one: do we insist he take his medication every night? If he refuses, do we enforce our rule that he can live with us no longer?
The answer, for us, is YES. That “house rule” is not negotiable. The “law” may say we can’t require Ben stay in treatment, but our “house rules” say we can.
Right now family rights in mental illness is in the news, as part of proposed law HR2646, The Helping Families in Mental Health Crisis Act. In hearing the stories of families who have lost loved ones to mental illness, or who have been attacked by loved ones in crisis, I am reminded of how lucky we are to have Ben in our lives, and stable – for today. Each day feels like borrowed time, but we gratefully embrace each one.
It wasn’t always like this, though, and may not be again…if his treatment stops. In the past, our “interference” has thwarted disaster many times. Here are some times I’d prefer to forget, but cannot:
1999: Ben drops out of high school, after a few years of increasingly odd and isolated behavior. We are “not allowed” to interfere. We suspect mental illness, perhaps depression. We are “not allowed” to insist on medication, as Ben is over 16 years of age. We do pay for years of therapy. We are allowed to do that.
2000: After ten months of success in an independent living program out west, Ben asserts his independence by smoking marijuana and decides to take control of his life. We practice ToughLove and letting him experience his own consequences. Though he does call once a week, and asks us to pay for a therapist (which we do), Ben becomes homeless and sleeps under trees in the cold Idaho winter months. We do not “interfere.” He is that homeless guy wandering around talking to himself. Later that year, we do interfere, and Ben comes home with the agreement that he will see a psychiatrist and follow treatment.
2000-2003. Ben’s cooperation is spotty, and hard to enforce. Seven jobs, few of which last longer than a week or so. Therapists insist we are “too involved” and should back off, let Ben live in his own apartment. Of course, we are allowed to pay for it. Our “interference” helps him find a place to live. We drive him around to find an apartment that will accept a 19-year-old kid with messy appearance, no credit rating or job, and allow a month-to-month rental agreement. We help him move in. We drive him to school. We watch him fall deeper into psychosis, helpless to insist on treatment. We wait for him to get sick enough to be helped.
The year of five hospitalizations for 21-year-old Ben.
- First time, he was “staring” at a child in a diner. Without us, he might have been arrested. With us, he was finally admitted to the hospital. Eight days later, he was about to sign himself out – which he was allowed to, even though he had refused treatment. We interfered. We applied for, and received, conservatorship – and the right to medicate (but only for as long as he was in the hospital). Ben improved. Ben was released, temporarily coherent and hopeful for his future. We lost our rights to help him. Ben went off his meds as soon as he was back in his apartment.
- A week later, he placed a bag of tobacco into his waistband to keep both hands free to keep shopping. He was off his meds, confused. He did not leave the store – but the police were called, and Ben was arrested for shoplifting. With our interference, the charges were dropped. Without it? He might have spent time in jail, with all the emotional and other life consequences.
In the years following, when not in treatment, he was almost arrested several times more, always when off his meds:
- being “too friendly” at the mall – talking to strangers, in a place where he’d had great childhood memories.
- Singing on someone’s front porch, where he thought an old girlfriend lived
- Eating a bag of chips in the middle of a CVS, because he’d been wandering for 40 hours and was hungry, but didn’t want to shoplift.
In 2011, after my book Ben Behind His Voices was released, Ben himself was “released” from the group home where he had lived for seven years. Why? He was “doing too well.” During those years there had been supervisors PAID to “interfere”, and that had taken the burden off of us. Ben didn’t love it there, but it helped him grow up by being away from our parenting except on weekends. But, when he did so well that he actually landed a part-time minimum-wage job, he was “promoted” to his own apartment, unsupervised, where it didn’t take long for him to go off his meds. If we hadn’t “interfered” that time, he might have died in his own apartment – he was afraid to leave, was not eating, and had missed a week of the job he loved (though he managed to call each workday to say he didn’t “feel well.”). We drove the streets all night, looking for our missing son. We were told no one was “allowed” to intervene by going to Ben’s private apartment. But we insisted on help – we screamed for it, interfered enough to get the police to go to Ben’s door, and he was admitted to the hospital once again – for seven weeks, until he would agree to go back on the meds. This, too, took family “interference”, in partnership with the Chief of Psychiatry and Ben himself. We got lucky. Ben had survived the “independent living” experiment. Many do not.
Ben now lives with us again, and house rules prevail even if the “law” does not permit our interference. We stay up every night to make sure Ben takes his meds. Other than that (and other House Rules of cleanliness, non-smoking, courtesy etc.) Ben makes his own decisions – and has earned the right to. Because we have interfered in his life, he has been able to develop a life, one he recently told us he is “so proud of.”
So, yeah, we interfere – because Ben lives with us, and we can. But if he were to decide not to follow the House Rules, our family has absolutely no legal recourse to help him continue his success. Who will help him if/when our family cannot?
Without his “interfering family”, my son has been homeless. He has come close to being in prison. He has been mugged – twice. He has been left to die –all in the name of “patients’ rights.” Indeed, that is where many of those with mental illness are today. We closed the hospitals years ago, but didn’t replace them with support.
Helicopters can be for emergencies too – and no one would ever criticize their usefulness when they hover for a good reason. Give families of those with mental illness the support and education they need to make good decisions about when/how to help. And give us the legal right to interfere to save our loved ones. Let us hover, and interfere if we have to. Lives depend on it.