By Paul Gionfriddo, as told to Jennifer Clopton
By the time my oldest son Timothy was five years old, it was clear to everyone – his parents, his three siblings, his teachers, and even to Tim himself – that things were different for him.
He had trouble with attention, was lagging behind academically in school, often withdrew into himself, had difficulty interacting with his siblings, was having playground issues, didn’t feel like he had any friends, and said he felt different.
His kindergarten teacher suggested a referral for evaluative services, and he was diagnosed – incorrectly, as it turned out – with ADHD. As the years progressed, so did the list of new diagnoses.
And eventually, schizophrenia.
By the time he was 10, Tim was showing significant signs of serious mental health issues. He could articulate that he heard voices. He engaged in dangerous behaviors – like strapping on rollerblades and going down a busy state road at night in his underwear.
We explored all sorts of treatments and drug therapies over the next few years. Between the ages of 10 and 18, he was in and out of the hospital – probably spending about 18 months total in-patient. Some stays were short – others were quite long.
When his schizophrenia symptoms started, I was mayor of our hometown. Then I transitioned into consulting and running a child advocacy non-profit and then a community health collaborative. I was well-educated about mental health policy and services, and I had access to many resources.
And even so, in the end, there was only so much I could do for my son.
Everything I thought I knew about how to motivate a child or create consequences – everything that worked for my other 3 children – didn’t work with Tim. Or it would work once and then never again. People say you need to do a better job controlling your child, making them do their work at school, and enforcing better boundaries and rules. You don’t need their second-guessing, because you’re already second-guessing yourself pretty much every day. Through it all, it doesn’t feel like you’re raising a child as much as managing them. At the end of most days, I felt that I was failing him.
It took a toll on my family. Tim’s mom and I were divorced. Timothy’s siblings continued to love him, but found it hard to be around him. Tim was closest to my oldest daughter when they were growing up. They were just a year apart. But she died of cancer in 2018 and only had one conversation with her brother the last 15 years of her life.
At a certain point – she realized – as did our whole family – that you have to let go. That process started for me when Tim turned 16. That’s when his stepmom and I started talking with him about the fact that once he turned 18, life as we all knew it would change. No matter what we said, society would view him as an adult. He would be allowed to make his own choices, and there would be adult consequences and responsibilities for whatever he decided to do.
We hoped we would still be able to find him supported housing and employment and help him stay in those situations. But as he moved along paths of independence, things began to unravel quickly – even with both parents and stepparents in a supportive role.
His symptoms flared, ending his education. He dropped out of school at the age of 18, leaving him with about a 9th grade education.
He was let go from his employment.
He was kicked out of supportive housing.
He went to jail.
He became homeless.
On the one hand it’s frustrating and heartbreaking when things just don’t work out. You don’t want to see bad things happen to your children – especially for reasons totally out of their control. They have an illness. But I can’t magically fix my son’s illness any more than I could cure my daughter’s cancer, and besides, like most adults, he wants to make his own decisions. So the most important thing I can do is to give Timothy my support and love, appreciate each day he is alive, and enjoy the time I have with him.
At this point, that isn’t much. I last saw him in person more than a year ago; last spoke with him a few months ago, and only occasionally will get a message from him online. I try to reach out far more than that, but I often don’t know where he is and have to work through intermediaries and service agencies. He doesn’t have a phone so it’s hard for him to be in touch.
Timothy is now 34 and I see him trapped in a revolving door of occasional hospitalization, frequent incarceration, and chronic homelessness. But he will tell you that in spite of this he is happy. He says he is enjoying life because on most days he is choosing where he wants to be and what he wants to be doing. When I hear him say that, I think, maybe it is my expectations that need to be different – not his.
I recognize that recovery from schizophrenia is often difficult, and his situation may not improve soon, but I also know that doesn’t totally define him. He is a wonderful guy. He is interesting, kind, and sweet. You would love having a conversation with him. He is a lot of fun to be around.
He’s also taught me so much, and he gives me hope and inspiration every day. I’ve been a policy and parent advocate for 40 years, and even though the help I can give to Tim may not be enough to change his life – and the lives of people like him – right away, I haven’t given up trying to bring about much needed change. Today I’m President and CEO of Mental Health America because I feel like as a country, we are no better at helping children like mine then we were more than 30 years ago when Tim was just a boy. We can do much, much better than this. And that’s, in part, on me.
Even so, I haven’t lost hope. My son and others like him with mental health conditions are resilient. And as frustrating, heartbreaking, and challenging as it can feel at times, many things are changing clinically and societally in terms of our understanding of mental illness, our ability to listen to young people, and our openness to talking about mental health. Our kids are creating brand new kinds of communities to support each other – especially in virtual environments – and I believe that with time, and with more advocacy, policy will catch up.
We just have to treat mental health conditions the way we treat every other chronic disease – through earlier and more aggressive interventions before crises occur – before Stage 4, as I like to say.
Parenting a child with serious mental health conditions is challenging. It tests our patience and often breaks our heart. But, like any other parent, in the end, all we can do is put everything we can into supporting our children while also recognizing that they will someday need and want to find their own way.
Paul Gionfriddo has been President and CEO of Mental Health America since 2014 and has worked in a variety of health and mental-health related positions during his 40 plus year career. He is the author of the policy memoir, Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia in which he discusses how Tim is one of the 6% of Americans with a serious mental illness and one of the half million homeless people with serious mental illnesses. You can follow him on Twitter.