It’s Not Easy Raising a Son With Mental Health Issues in the Age of Mass Shootings. Here’s What One Mom Wants All of Us to Know
To be a parent is to worry about the unknowns.
Who will my kids turn out to be? Will they live long, happy and healthy lives? Will they become big-hearted people who do great things in the world?
Questions like these consume so much brain space in the minds of mothers and fathers—and grandparents, aunts, uncles, and everyone who loves a child.
Yet for parents of kids with special needs, these unknowns are often all-consuming, says Dawn Davies, author of Mothers of Sparta: A Memoir in Pieces and the mom of a 23-year-old son with a neurodevelopmental disorder that caused behavior issues and emotional dysregulation.
“Every parent is a little afraid of the unknown,” says Davies. “But when you have a kid who shows early signs of neurodevelopmental issues—and as time goes by, it ends up looking like those behaviors are anti-social—then the unknown becomes frightening. Because we stop thinking about things like, ‘Is he going to lose his job or drop out of college?’ and start wondering, ‘Is he going to commit a criminal act before he’s 18 and his treatment window closes?’”
We sat down with Davies to talk to her about what it’s like to raise a child whose brain chemistry makes empathy impossible and prompts behavioral issues that even most doctors and psychologists say they can’t treat. We wanted to know how the system has failed Davies and her son, as well as what she wants everyone to know about the challenges she and so many parents like her face.
A Conversation with Dawn Davies
Q: Tell me a little bit about your son and your experience raising a child with emotional and behavioral special needs?
When it came time to have babies, I read all the books. I knew about childhood developmental stages, and I had two children before my son. I thought I had it figured it out by the time my son was born, but he stopped breathing soon after birth and was immediately taken to the NICU, where he spent several days. By the time he was 18 months old, he had experienced a few medically traumatic events and three surgeries that I was told he would not remember. I now know that trauma can affect children in infancy, but I did not understand this at the time.
As he grew, my son did not exhibit neurotypical behavior. He was late talking, he didn’t play with others, and he had blunted reactions. Initially he was diagnosed with “developmental delay,” and then Autism Spectrum Disorder (ASD) at age 4, but as he grew older, his behaviors became socially unacceptable. And as I reached out to teachers, therapists, and special education programs, we received little help.
My son was repeatedly bullied, denied educational services he was entitled to, and was punished by teachers for being unable to follow directions, despite having been diagnosed with a receptive language disorder. He disliked school and his attempts to follow directions and fit in were met with repeated failure. When he was 8, the bullying was so bad he told me he wanted to die.
We did what we could, including meeting with school administrators, and even changing schools. By the time he was 11, he had a diagnosis of Conduct Disorder and was prescribed multiple medications, most of which came with bad side effects.
Q: What was it like trying to get help for your son?
Eventually, to save time, I’d go into appointments with a disclaimer, reassuring the specialists out of the gate that weren’t neglecting him, that we were feeding him, that he hadn’t been sex trafficked. He was loved. Cuddled. Read to at night. Listened to.
I did this because I felt there was blame placed on me and on our home life. I think mothers get blamed for a lot and it is easy as a conscientious mom to think your child’s behavior is a result of something you are doing wrong. But the questions I received felt judgmental: Are you and your husband together? Oh, you’re not. I see. So, your son has a stepfather. Is there any conflict in the home? The message was: What must we be doing at home that’s causing this?
We were eventually told to “wait until he offends” and then he would get “in the system” (a.k.a. prison). A Conduct Disorder diagnosis before age 18 means an antisocial personality disorder (ASPD) diagnosis once you turn 18. ASPD means “sociopath.” And sociopath means “psychopath.” And psychopaths “can’t be helped.”
There’s a look that comes over people’s faces—therapists, doctors, teachers—when they see a diagnosis they classify as untreatable. I could seem them mentally writing us off in real time while they were sitting across the desk from us with my son’s chart in their hands.
This was maddening. Whatever system was supposed to exist was failing him. I felt like I was failing him. The struggle affected the dynamics of our whole family. “Waiting until he offended” was not an option. We eventually did come up with a way to help my son, but it took years, and lots of trial and error. I had a very helpful phone call with neuroscientist, Dr. James Fallon, author of The Psychopath Inside, who taught me about “pro-social” psychopaths. Other than that, no school system, psychologist, or doctor we saw ever helped. Even though we saw some caring ones, I think that our situation was beyond their professional experience.
Q: It sounds like you’ve been disappointed at every turn, hitting wall after wall when it came to finding your son the help he needed.
The “system” fails families like ours because we do not recognize how early childhood trauma can contribute to brain changes and behavior changes in very young children. Parents don’t know about it, doctors may not know about it, and if they do, they don’t ask parents the right questions. I don’t think therapists and special education teachers are trained to recognize it, let alone work with it. I also believe that, like Dr. James Fallon says, you can create a “pro-social psychopath” who learns to behave appropriately within a set of social cues and behaviors—but no one I’ve encountered besides Dr. Fallon ever told me this was possible.
My son may have a neural abnormality from that cyanotic episode at birth. Or he may have early childhood trauma that I wasn’t aware of. Or he may have both. What we learned was that punishment didn’t work with his brain, and that he didn’t experience that healthy shame most people feel when we do something wrong—the kind of shame that helps us self-correct. With a lot of trial and error, we created a system that involves open communication, lots of repetition, and a focus on positive reward instead of punishment, because punishment has never worked for him.
My son, who we were told would be a lifelong criminal, now lives independently with some social support, has a job, and is working through the general angst that comes with being in your early twenties. He’s moving toward a life of content and productivity. It’s a far cry from prison.
Q: What’s your relationship like with your son today?
We communicate daily via calls and texts. Everyone needs someone they can talk to about anything. Social and emotional isolation are terrible. Hopefully, I will be replaced with friends, or an age-appropriate primary relationship, but I understand things take time, and he is taking steps to develop social support outside of family.
I’m not a therapist. But in a way, I’m like a coach in addition to being his mother. I’ve had to develop a skillset that will help buoy him until he can take the next step in his development. It’s slow going, but they say the brain doesn’t mature until the mid-to-late twenties anyway. It’s important that he has someone in his life to ask him what he’s thinking about.
I’m learning to appreciate that he has a lot to say, and there are feelings behind his thoughts that he was unable to access when he was younger. I’m learning to give him space to share his feelings without worrying about what he is thinking and who he is going to become. He is in a state of “becoming” all the time, and I am learning to honor that without being afraid.
Q: When you see news of yet another school shooting, what goes through your mind?
I will not align my son’s diagnosis and behavior struggles with anything a school shooter has done, even though I once overheard a school resource officer say my son was “a school shooter waiting to happen.” Incidentally, we lived in Broward County, Florida, the same school district as Parkland’s Marjory Stoneman Douglas High School. My son is not a “school shooter waiting to happen.” That comment was offensive and insulting and proof that people have been quick to label, with judgment, without offering any help.
I know this is going to sound like a generalization, but when we look at the family histories of school shooters, we can see enabling behavior trends—parents have bought firearms for their children. They look the other way in the face of serious warning signs. They don’t report violent behavior at home to authorities. They don’t look under the surface for signs that something may be wrong, or they see a sign or two and don’t dig deeper. They turn their backs on their children, rather than seeking help. I want to believe that for every school shooter, there are thousands of kids with Conduct Disorder whose parents relate to them in ways that will not let them go adrift.
At the same time, we are flying by the seat of our pants. We are parents, not forensic psychologists. Regular psychotherapy can be prohibitively expensive, and often doesn’t work with psychopath brains. The school psychologist doesn’t have time to handle complex, ongoing mental health issues. It’s not within the scope of teachers’ job duties. And medical doctors tend to medicate difficult behaviors in hopes that they become less bothersome. No one thinks to get to the root of things: Why is the child behaving this way? What can we do to change the neural pathways? How can we help this child learn to respond differently?
I don’t defend shooters or make excuses for their behavior. Once you do an evil act, you’ve crossed a moral line that can’t be understood. You’re going to prison, and I have no sympathy. But my heart aches with the possibility of what these “monsters” could have become had they had early intervention. We must remember that every shooter was once a kid who didn’t get the help he needed.
After the Parkland shooting, I wrote something that went viral about how mothers of kids with severe emotional and behavioral issues hold some answers in terms of the kind of help we need. We are right here! We can tell you what we need, but no one seems to be asking.
One form of support could be very early intervention. Let’s create a system where there is no shame in saying “something may be emotionally wrong with this kid.” Maybe home life caused it. Maybe some other trauma. Maybe the brain is a little scrambled. But it doesn’t matter. Let’s identify 3-, 4-, and 5-year-olds who can’t appropriately recognize emotions. Let’s screen them for limbic system dysfunction. Research shows that nearly 1 percent of kids show psychopathic traits, which is as many as have ASD. Let’s make early intervention available for them as it is for kids with ASD who receive applied behavioral therapy (ABA) in preschool. Insurance covers ABA and therapists come to the children’s homes.
And don’t vilify us or our children, especially when we are seeking help.
Q: What would you say to parents who are dealing with similar issues to what you and your son have faced? Do you have any advice?
Self-advocacy has been our reality. You are the parent. It is your job to reach out and seek help. You can’t rely on schools to fix developmental and/or mental health issues for you, because they are not equipped. You must educate yourself. Read books and papers on your child’s condition. Contact the authors of the books and papers that you read and ask if they are seeing patients, or if they have colleagues they will recommend. If one doctor isn’t a good fit, try another one. Just because we didn’t find success doesn’t mean you won’t. Keep trying. Find an online support group of other parents who are going through the same thing. Other parents are goldmines of information, and we bear witness to each other’s struggles. It helps.
If your child’s behavior grows more problematic over time don’t give up. You may have to draw lines and create strong boundaries, but that’s okay. And try not to become paralyzed. Try not to feel so wracked with indecision that you do nothing. Doing nothing is the worst.
Above all, remember that your child is a human being with a different brain that you don’t yet understand, not a monster.
My son is showing signs of success, but it took our family many years. There’s nothing heroic in anything we have done. It’s just been a desperate desire to not quit, because we love this child. Sometimes the stuff you try will work. Other times it won’t. And it’ll all be stupid hard. But you can’t give up. You’re the parent.
Dawn Davies is the author of Mothers of Sparta: A Memoir in Pieces (Flatiron Books, 2018). Her essays and stories have been Pushcart Special Mentions and Best American Notables. Her work can be found in McSweeney’s Quarterly Concern, The Missouri Review, Poetry Northwest, Narrative, Fourth Genre and elsewhere. She currently mentors creative writers and is pursing advanced trauma recovery coaching certification. She can be reached through her website at DawnDaviesBooks.com.