Parenting a Child with Mental Illness
A journey through ADHD, DMDD, and beyond.
Posted Aug 23, 2017
My son just turned ten. He's intelligent, expressive, lovably nerdy, and one of my favorite people in the world. He can also be moody, anxious, angry, destructive, and (yes, I'll admit it) scary. He has attention-deficit/hyperactivity disorder (ADHD) and disruptive mood dysregulation disorder (DMDD). For the sake of this blog, we'll call him 'the Boy'.
The Boy started exhibiting signs and symptoms of ADHD around age four. By the end of kindergarten, he had the official diagnosis. Then, between first and second grade, the mood disorder emerged. He became angrier, more destructive, and expressed thoughts of ending his life. He even had a plan that, while not feasible, worried the neuropsychologist who assessed him. She helped kick-start the individual education plan (IEP) at my son’s school to manage his safety there.
We cycled through stimulants for the ADHD until we found one that more-or-less controlled it. The antidepressant didn’t seem to improve mood, though. By third grade, the Boy's angry outbursts were out of control. He’d hurt himself. He’d destroy property. He was irritated all the time, to the point that I was constantly on edge as well. If I said no to him, he went into a rage. If I said yes, he went into a rage. In June of 2016, this culminated in an outburst while we were driving to his grandma's house. He started assaulting me and his younger sister, and I had to drag him into an emergency room. He was hospitalized for two weeks, discharged to a partial hospitalization program for another five weeks, then discharged from there to a behavior development program for six additional weeks. He came out of treatment with the DMDD diagnosis, a prescribed antipsychotic medication, and county-based case management.
I wrote about this for the first time for a fundraising campaign to cover the hospital bills, and I cried at length over that small post. I cried because I was terrified for my son, and the hospitalization had traumatized all of us. I cried, too, because I am a mental health social worker, and I had no idea what to do for my child’s mental health. In my professional capacity, if a parent came to me with their adult child’s mental health concerns, I’d have so much to contribute. Children as young as mine, though? I have no idea. I still feel at a loss sometimes despite years of managing this. That’s the only reason I mention my profession: to show that even people who know plenty about mental health don’t necessarily know how to parent through it.
In other words, this blog isn’t written as an expert’s guide to childhood mental illness. This blog is written as one parent's experience of raising a child with mental illness in a world that doesn’t seem to accept that children can experience such things. This blog is meant to help other parents in my situation understand that they are not alone. It’s meant to help children's mental health providers understand the perspective of the parents involved.
Yes, I do have concerns for my child’s privacy. I have taken routes to protect that, and my desire to break the stigma of mental illness might just be higher than my fear of a breach of privacy. I've written about this subject in various capacities for over a year now, and the positive responses definitely outweigh the fears so far.
Yes, I do worry about negative responses to my family's journey, too. Not just for my son, who has to live with mental illness amongst other children, but for me. Some things I’ve written in the past about parenting my son have led to deeply judgmental, and occasionally abusive, responses. Parents of ‘typical’ kids get judged, too, of course, but you can bet on the judgement getting uglier when people perceive something ‘wrong’ with your child. Everything we know about genetics, socialization, environmental triggers, and trauma outside of a parent’s control goes right out the window when people decide it’s time to judge your parenting abilities and choices.
My hope, then, is that this blog will bring people closer to understanding this particular type of parenting journey. I’ll be attending a symposium through PACER soon, directed at parent leaders in the child mental health community. My son is going into an EBD (emotional and behavioral disorder) program at his school, meaning he will no longer be 'mainstreamed'. Through some of my professional endeavors, I recently got access to the social work journal library at a university. All these things are learning opportunities for me, and I plan to incorporate that learning into the blog as well.
This writing will be part experience, part research and education, part stumbling around figuring things out as I go. In other words, I might not always know what to expect for my son and this mental illness journey we certainly couldn't anticipate that day he was born. Through my writing, though, maybe others can better expect what they weren’t expecting, either.