In late January, I called 911 after being attacked by a family member. The police refused to respond.
Actually, after the dispatcher told me police were on their way to help and hung up, an officer called my cell phone directly and yelled at me for asking him to come. I should know better than to put him in that position, he told me. He stayed on the phone with me for 10 minutes, berating me until I broke into tears, at which point his tone softened a bit. But still, they would not come.
Truly, I can’t say I blame them.
Let me back up.
Our son knows his mother is a writer and he has asked me recently to write about him more because, in his own words, “other kids have sick brains too and we can help them if we talk about it.”
I’ve left his name out of this piece because he’s a teenager and it’s rather personal, but I do try to share our story when I can, if only to help people understand what it is to be a family seeking treatment for a child.
Whatever hesitation you may be feeling about whether my sharing of this story is appropriate, I promise I have felt it more intensely and considered it from all possible sides. I understand the stakes here, probably better than most. I have discussed this story with my son and, on three separate occasions, he told me to publish it.
Still, I held it for over a week to think through our decision thoroughly before sending it to an editor with a reputation for compassion, who helped me rewrite four drafts and then held this piece for almost two months and during that time continued to check in occasionally just to be sure we are OK with sharing such personal information. We are.
What we have learned is that, for us, it is time to talk. Silence, while it may protect our family’s privacy, does nothing to promote change and everything to increase shame. The same lack of conversation that protects our son’s identity when we stay quiet also keeps lawmakers, friends and community health professionals in the dark about what we need. And it means that other families continue to suffer in silence, thinking they are doing so alone.
What we have learned is that, for us, it is time to talk. Silence, while it may protect our family’s privacy, does nothing to promote change and everything to increase shame.
We do not relish these opportunities to share private details in a very public forum, but we are grateful for the chance to educate, and we view it as another step toward our goal of better access to treatment for everyone. We have no interest in profiting from our son’s trauma, and so a donation equivalent to my writer’s fee for this piece has been made to the National Federation of Families, which is an organization that serves families of children with mental health needs. All we can do is ask for your support and respect as we continue to share our stories and thank you for giving us the space to do so.
So what happened?
My oldest son is 14. He has several diagnoses. Some concern his mental health, some his physical health, and some his cognitive ability and neurological differences. Each and every diagnosis was hard-won after years of doctor visits and testing, but that is a story for another time. For now, all you need to know is that sometimes my son’s behavior is not within his control, or mine, or his teacher’s, anyone else’s, and sometimes that behavior can be violent.
You should also know that our son is the size of a grown man. He is taller and weighs more than I do and wears a men’s size 13 shoe. It’s not his fault, nor is it anyone’s; it’s just our reality. Aggression can be a symptom of other health needs. We do not blame our son, we love him. He is not the bad guy in this situation. There is no villain here, and likewise there are no heroes. Just a kid and his parents, all doing the best we can.
Ninety percent of the time, he is sweet and docile and kind. He will still hold my hand in a parking lot, and he loves people with a pure sort of sweetness that is rare. He can find intense joy in the most mundane of situations, like a new coupon arriving in the mail. He once wrote a note addressed to The Grinch Who Stole Christmas, explaining that he understood why the Grinch needed a friend and they could be there for each other. Usually we can manage our son and his behaviors, and are more than happy to do so. But sometimes, like in earlier this year, we need help. Often, that level of help just does not exist. I wish people understood how often. I certainly didn’t know ― before we had no other choice but to live this way.
Like Jan. 23.
We knew immediately it would be a hard day because he woke up in a foul mood, asking if he could learn how to use guns and talking about the ways in which he’d like to execute a public figure. Lately, he’s seen other people on the news who said that’s what they wanted to do, and even though he couldn’t understand it, he became obsessed with repeating their actions. We had to sit and explain, with as much patient logic as we could muster, why that was never a good idea, how those other people were doing something wrong, and why we will never have weapons in this house. There are no guns in our home, and there never will be.
He said he understood and let it go ― for a while.
Later, he was calm. He held a sock monkey as we drove in our minivan, on our way to pick up lunch from a drive-thru for our entire family, and talked about how excited he was to eat his chicken sandwich. My daughters were bickering and poking each other in the back seat. My tone was stern as I corrected them and told them to keep their hands to themselves. That’s what made my son snap. (Although, truthfully, if it hadn’t been that, it would have been something else. Anything, really. It was coming, regardless, and we all knew it. If not my voice, the catalyst could have been a cloud whose shape he didn’t like or the color of a road sign. There is never any logic in what sets off an episode, but there are patterns, and after over a decade of parenting a child, you come to know those patterns well.)
He screamed to turn the car around, then unbuckled his seatbelt and lunged into the front seat at my husband, who was driving on a busy and crowded road. He ripped my husband’s shirt and grabbed for the steering wheel. When I reached out to stop him, he turned on me and swung his fists at my face. Then he turned and started swinging at our youngest child, sitting in a booster seat behind her brother.
We couldn’t drive safely with him in that state, so we pulled into the closest parking lot: a local strip mall. We’ve been in this position before, many times. There is only one option.
Every therapist and doctor will tell you to call 911 if someone is in crisis, and even an ambulance or mobile crisis team won’t respond if the child is being violent. I know this because we have already gotten police escorts to the hospital several times. I’ve been on the phone with crisis intervention hotlines who told me to hang up with them and call the police because they can’t respond in the midst of a violent episode — in many areas of our country, only law enforcement can do that. Usually, in our family, those situations have been more intense than this one. It’s true that in the past there has been a weapon like a kitchen knife or a threat on someone’s life, like our son attempting self harm, and technically that wasn’t happening on Jan. 23. (Unless you count the inadvertent threat to the other motorists on the road, but in this situation the police don’t.) Although, I have to ask, how bad are we supposed to let it get before we act? So, I dialed. Again.
Every therapist and doctor will tell you to call 911 if someone is in crisis, and even an ambulance or mobile crisis team won’t respond if the child is being violent. I know this because we have already gotten police escorts to the hospital several times.
“Look, you’re not new to this. You know there’s nothing I can do about it unless he’s an immediate threat to someone’s life,” the police officer told me as I looked at my daughter, terrified and shaking in the back seat, and her brother now rocking and pounding his fists on my seat. The officer, who’d been harsh at first, sighed at me over the phone once his tone softened. My tears were streaming from the same frustration that was causing his anger, and even though we didn’t like the situation or even each other in that moment, there was still that silent sense of mutual understanding.
He continued, “If your son runs out into heavy traffic, I can come out there and get him. But right now he’s contained in the car, he doesn’t have a weapon, and you have two adults there. You are his parents. Take him to the hospital if you want to, but it sounds like he’s calming down now if he’s not attacking anyone at the moment. I can’t come out there and put cuffs on a kid, especially a kid with a diagnosis. You know that.”
He was right. I do know that. It’s not their fault that we rely on police to respond to mental health emergencies, and it’s definitely not their fault that between regular talk therapy and more intense intervention like hospitalization, for most families in America, there is nothing. No other options exist. Nothing in the middle ― just time to wait and see if dangerous behaviors escalate.
I also knew that if I didn’t make the call then it would be on me if someone accused me of putting my other children in danger through this incident. I’ve had officers knock on my door and already been through one CPS investigation when well-intentioned strangers thought my son was putting his younger siblings in danger. I have handed our therapists’ names and phone numbers off to detectives and sat with social workers to show I’m doing everything I possibly can to keep everyone safe. The only thing that happens in those situations is that the social workers confirm we are doing everything we can and apologize because they understand how flawed this system is and there is nothing else they can do.
All I knew in January was that there wasn’t a safe way to get to the hospital in our son’s current state, we couldn’t put the other cars on the road in danger, and I didn’t particularly want to go to a hospital anyway. We’ve been many times, through four inpatient stays and countless other admissions, and I know enough to be certain they would not admit him over this. What did he do, really? Throw some punches and rip a T-shirt? It’s not enough. It hadn’t escalated nearly to the point of being deadly, he had no plan, and besides, no one wants to spend time in a hospital in the middle of a pandemic when you already know what the outcome will be.
So, I thanked the officer through bitter tears, and did the only other thing I could think to do. I hung up with the police and called his therapist, listened through the ironic message telling me to call 911 if there was a crisis, and left her a voicemail. She would return my call a few hours later, and they would resume their normal biweekly telehealth session the following day. In the meantime, there was nothing to do but sit and wait in a strip mall parking lot until our son’s aggression calmed itself. Which it did, as it usually does. Then we pulled away, picked up our lunch, and continued on as normal because, really, what other choice do we have?
I have been a foster and adoptive mother parenting children through severe trauma for almost 14 years. I have an intimate understanding of the services available to us, or lack thereof. I am the one who takes our son to the psychiatrist and arranges the talk therapy. I am the one who fought for neurological support and services in school and picks up the prescriptions. I am well aware that there are no mid-level interventions in our system. At least none available to us. In some areas, with Medicaid, families may qualify for other services. But currently not every child is eligible and right now our family lives in an income-based eligibility area, which means that, regardless of our son’s diagnosis, because my husband has steady employment, our son does not have access to any services that would be funded through Medicaid.
Every state is different, and with our private health insurance and access to mental health professionals like talk therapists, our family still counts ourselves among the lucky ones. We understand that we have more options than those who have have less. We have the privilege to be able to afford therapy and medication. Not everyone does. Yet, between that relatively low-level tier of “find someone to talk to, get him in special education services, and put him on medication” and waiting until a serious and life-threatening mental health crisis, in most places in America, there is nothing else you can do. No middle ground, just a gaping hole we let our most vulnerable children and their families fall straight through. We could fix that, starting by granting Medicaid access to everyone, but for now we don’t.
Between that relatively low-level tier of 'find someone to talk to, get him in special education services, and put him on medication' and waiting until a serious and life-threatening mental health crisis, in most places in America, there is nothing else you can do.
For now, my family’s taxes pay for other children to receive services like classroom aides, or home-based therapies, or partial treatment programs that we aren’t allowed to access ourselves. I don’t begrudge those children access, I only wish we could receive the same. For now, we force families like mine to live every day in that space between, where the therapists and the doctors know typical treatment is not enough, it’s not safe, but it’s also not quite dangerous enough to get involved, and for now there’s nothing more they can do.
If it escalates to the point that our son actually threatens his own life or someone else’s with weapons and a plan, then he may end up with a higher tier of intervention, such as another hospitalization, a residential treatment program, or even time spent in jail. Our prisons are filled with inmates just like my son, who should have received treatment sooner. I know that. I don’t wish for it, but I have no choice but to accept that it may become a possibility for us as well.
Those are all outcomes I would do anything to avoid. Like any parent, we just want our son to be healthy. I can’t do that on my own, but when our village very literally refuses to respond to our panicked calls for help, what else can we do?
I would give my life to change this about our country, and if I’m being honest, most days it feels like America is telling me that just might be where this goes. If I could ask for anything, it would be increased access to mental health care for families of all incomes and greater collaboration between law enforcement and mental health professionals. We can’t keep going in this direction.
My children deserve better than this and so do yours.
Stephanie Giese is a mother of five and an advocate for American children’s mental health services. She has been a foster and adoptive parent since 2008 and served as a public school teacher in the states of Maryland, Florida and Pennsylvania. Her work can be seen in various online and print outlets as well as on her personal website, Binkies and Briefcases.