Updated: Mar 20, 2021
Like anyone preparing for the birth of a child, I had an idealistic picture about how it would turn out. I would never make the mistakes my parents had, I would be infinitely patient, I’d anticipate all his needs (and meet them), and usher him happily and wholly into adulthood with empathy, guidance and just enough structure to create an optimal environment for him to flourish.
(Insert record scratch here.)
I had my beautiful son in 1994 using a sperm bank to become pregnant. While I “engineered” my son to be smart and tall (to offset our family’s obesity genes) it didn’t occur to me to think much about the donor’s mental health history, and it didn’t occur to the sperm bank either. My son, along with many of his 21 siblings, fathered by the same donor, have struggled with varying degrees of mental illness, regardless of their highly varied upbringings.
My son’s official diagnosis is Bipolar II disorder with psychotic features, and although not formally diagnosed, he believes that he is on the autism spectrum. I also believe he has an undiagnosed processing disorder, which made him very sensitive to noise or any chaos in his environment as a child. As an infant he rarely slept and was unable to self-sooth. He was also exceptionally bright, musical, artistic, and funny. From the time he started school, he began struggling with peer relationships which were explosive, and he was bullied to the point that he became suicidal by 6th grade.
I remember sitting in the school counselor’s office, as my son told her about the voices he heard and the things he saw. My son had been sharing a journal with school mates where he wrote his intention to kill himself. He wouldn’t “contract for safety”, which is to say he wouldn’t agree not to kill himself. I tried so hard not to cry. It didn’t work. I was devastated. How had I missed this? I knew he was suffering, but didn’t every adolescent? I didn’t know how bad things had become. Over time, he had to tell his story again and again, to psychiatrists, counselors, E.R. doctors, EMT’s, the police. I never realized how tired you can get from just listening. I was exhausted, and nothing was even happening to me. We did what we were told to do - institutionalize and medicate him. After his first week-long (regrettable) psychiatric hospitalization, at age 12, he attempted suicide.
Sixteen years after that first call from his 6th grade school counselor, I imagine what my son still goes through every day, and I wonder if I could get up the next day if I were him. I honestly don’t know. He is the strongest person I know. He keeps going, despite anything and everything that tries to stop him. And I do my very best to help as his mother. I often consider my role as the parent of this young adult, who is now a parent himself, and I try to maintain healthy boundaries while also being supportive.
Raising children with mental illness is challenging. Patience wears thin, because you want them to do the things you need them to do. Like any parent, but even more so as a mental health professional, a lot of my anguish came from a place of shame. I wanted him to act “appropriately” at school and in public. I wanted him to “just get along” with others. I wanted him to be less “provocative” and more easy going - like me! When he didn’t, I felt embarrassed and I blamed myself. And honestly, I cared more about what others thought of me than what he did. Which created more shame.
If you’re a parent raising a child with mental illness, I want you to avoid making the same mistakes I made (and do some of the things I got right). Here are some lessons I’ve learned:
• A diagnosis provides a roadmap. Understanding your child’s diagnosis is critical in understanding behaviors and effectively responding. This knowledge can help you find ways to cope. We never looked deeply enough at factors I now see are so obvious - him being on the spectrum and his processing disorder...it was so overwhelming - and even as a mental health professional myself, I couldn’t figure it out - I was too close. He had also died moments after being born, had numerous hospitalizations as an infant, and experienced some significant losses at a very young age, including the suicide of a teenager he idolized. So trauma was another aspect of his suffering. It was, and remains, hard to know what is what and how to treat it.
• Open communication. Make sure you’re not shutting off communication before you give your child a chance to explain how they feel. Don’t come to any conversation with the idea that you already have the answers or how to fix everything. If we took all the energy we initially spend as parents trying to “fix” our children and instead focused that energy on understanding them, we would get them the right help faster.
• Trust your gut. You know your child better than “they” do. My son had a psychiatric exam and while I knew he was deeply troubled, I also knew he wasn’t the psychotic serial killer the results made him out to be. I knew he’d “thrown it” on purpose because he was sick of being scrutinized and we even shared a laugh about it. Later, I let him drop out of high school, after unsuccessfully attempting a charter school, a special day class, and then home-schooling. I could tell he was buckling under the pressure to fit in and excel academically; his moods were just too erratic. I was amazed at how he spent the next year - healing himself by exploring the outdoors, performing music, organizing a benefit concert for hurricane victims, writing songs, and selling his computer games. Your decisions may appear unconventional or counter to social norms, but trust yourself and what you know about your child. I never regretted it.
• Care for yourself. Parenting a child with mental illness is isolating. We feel judged and ostracized by friends and family - and the many “professionals” involved in our child’s life. When I first heard about self care, I laughed. I work all day and then my kid needs me. I regret to say that I engaged in a lot of maladaptive coping mechanisms to escape the utter hopelessness and “stuckness” I felt. In retrospect, I needed time for myself, healthier outlets and more support. What keeps me going are writing, painting, cooking and anything that encourages me to express my creativity and the wide range of emotions I still experience with every crisis and each victory. Art journaling is an especially wonderful outlet. One helpful thing I did was to change my employment so I worked from home, had more flexible hours and could be home most afternoons if he wanted to talk and decompress from his school day.
• Make a family crisis plan. When my son was an adolescent, I became a single parent. At that time he was often having violent outbursts. Although not directed at me, he endangered us both as well as the walls and furniture. When he was calm, I told him my plan that if another crisis like that occurred, I would call our local police (who had come to know him quite well, and they were wonderful with him) and if needed, I’d call an ambulance that would take him to the hospital until he could be safe again. This happened twice, until he realized I was serious. Not wanting that outcome again, we worked together on strategies to help him manage his high emotions, so that both of us could be safe. Even now I maintain relationships with police, mental health providers and family services (in my young adult son’s area) so that I can call them to provide de-escalation support, when needed.
*Get the right support. Over the years, we encountered many disrespectful and ineffective quacks in mental health, social services, law enforcement, medicine and education. And he wouldn’t still be here without those who helped so much. I remember how helpful it was when my son’s psychiatrist, Peter, calmly listened to everything my son was sharing about the violent voices in his head, his inability to sleep, his nightmares, his anxiety and fears. Peter refrained from over reacting, and provided us both with calm reassurance. He knew this was a marathon, and he knew the psych-evaluation wasn’t an accurate depiction of my child. Holding my son in high regard, regardless of his mental illness, fortified us both to keep going. His many therapists, including Sally, who aligned with his feelings of anger and injustice, while helping him develop responses that were less self-destructive. Officer Jensen, who would come over and sit in the yard with my son, talking with him until he returned to calm. The retired therapist, Wil, who still takes my son’s calls, pro-bono, morning or night. The judge who sent my son to drug court and therapy, rather than jail, and warmly congratulated him when he graduated. The lawyer who advocated on his behalf. Support groups, like NAMI. And most of all our steadfast community of friends and family.
Only you can do this hard thing, but you can’t do it alone.