Recently the US declared children’s mental health to be a national emergency. While the spotlight helps, the mental health system for families is profoundly broken and in drastic need of additional resources and support. In order to help shine a light on the need for change, we asked Stephanie Giese for permission to share an excerpt from her memoir All I Never Knowed: Mental Illness, A Mother’s Love, and a Broken System.
I kick the door open as quietly as I can because Penny is drooling on my shoulder and Abby is still asleep in the car. The farm where we spent the afternoon wore both of them out. The house phone rings, but I ignore it as I put the baby down in her crib and walk back out to get my other daughter. Once Abby is inside, tucked under a blanket on the couch, I glance at the caller ID and see that it was the school. Actually, they called several times. My heart starts to sink when I realize that I turned my cell phone off during the preschool field trip. When I switch it on there are eight missed calls from the same number. I don’t know how long Nicholas’ school has been trying to get in touch with me, but if they’ve called this many times, it must be important. I try to take deep breaths and stop my hand from shaking as I dial the number to call back, but something in me already knows this is bad.
“Hello? This is Stephanie Giese.”
“Mrs. Giese. Hi. My name is Mrs. Crowley and I’m the guidance counselor here at Nicholas’ school.” I know who she is, we were in a meeting together a few months ago. “We’ve been trying to get in touch with you for quite a while.” She is worried.
“Yes, I’m sorry about that. I was chaperoning a field trip for my daughter.” Didn’t they try to call Eddie? Surely, he could take one phone call. Why does this stuff always fall on me? “What’s going on?”
“I don’t mean to alarm you, but there has been what I would consider a very serious situation here at school today.” She explains that in his kindergarten classroom Nicholas got into a bit of trouble for being off-task and was very upset with himself for getting reprimanded. He wasn’t paying attention, kept talking to his neighbors, and lost a behavior token. Nothing that was especially note-worthy, it was all very normal behavior for an almost- seven-year-old. That is until he was so shaken by getting into trouble that he took a pair of scissors and threatened to remove his own arm, and then the situation continued to escalate from there. He became paranoid and delusional. Something about a blonde girl? They removed him from the other children, but he continued to scream that she was there and coming to get him. No one in the room was blonde, and even after they sent out all of the women and left him with male staff, he still said he could see her, so she seems to be a hallucination. He has been in the office all day with four adults, and they still can’t calm him down, but he has deescalated since the first few times they tried to call and is no longer trying to hurt himself.
“Although,” she notes, trying to find a tiny silver lining, “he has been very sweet and he’s using excellent manners toward everyone else, even in his current state.” I allow myself a small piece of relief, briefly thinking of Mrs. Crowley’s now largely pregnant belly and Nicholas holding scissors. “But he’s become a danger to himself.” A gasp of air that might pass for a laugh in other circumstances escapes on its own. The whole conversation just seems so surreal. His guidance counselor isn’t finished.
“I was actually calling to see if we had your permission to call in a mobile crisis unit or transport him to the hospital. He seems to be suffering a psychotic break. It’s very important that we work as a team to get him immediate care.” I don’t know what a mobile crisis unit is, but when used in combination with the words psychotic break in reference to your kid, it’s definitely not a good thing.
I feel my legs give out under me. The tears want to come, but I can’t let them. Not now. I have no choice but to be strong if I am going to convince her to release my son to me.
“I’ll get him. I’ll take him to someone.” My voice is stretched thin while I speak to her from my place on the carpeted floor. I have no idea what I mean by that, but I know I need to get him home.
As if she can read my mind, Mrs. Crowley says, “You had previously shared that you were taking Nicholas to therapy?”
“Yes.” That’s true. I could call there first. “He has been going to play therapy. I will call and see if she can see him today or tomorrow.”
“While that couldn’t hurt, I’m afraid we may have moved beyond the realm of play therapy. Nicholas also needs to see a child psychiatrist. Immediately. Do you have a pen? I’m going to give you a list of names. I will send them home in Nicholas’ folder as well. Call and ask who takes your insurance. Get him an appointment as soon as possible.”
Her voice is kind, but it has a more commanding edge than it did in our last encounter. “In the meantime, do not leave Nicholas alone tonight. If he has another episode like this, you will need to take him to the emergency room at York Hospital. York, okay? That is important,” she pauses for emphasis. “The other hospitals in our area do not have the resources to treat mental health emergencies. If that happens, tell them it is not the first time and that he needs treatment. Mrs. Giese, I know this is a lot of information. Do you understand?”
“Yes,” I whisper into the receiver. Yes, I do understand that a professional just told me that there is a very real possibility that I might need to make the decision to have my kindergartener committed tonight.
I put the girls back into the van and ignore their protests so we can retrieve their brother from school. My head is spinning with all of the things I should do. There are so many phone calls to make and no rule book to follow. By the time I get to him, Nicholas seems fine. He is calm and responsive and acting like himself. If I hadn’t spoken with Mrs. Crowley, I wouldn’t have guessed anything was wrong. Should I keep him separated from my other children? How would I even do that? Should I send the girls to their grandparents? For how long? I just wish someone would tell me what I am supposed to do.
I will do anything, but I am terrified that whatever decision I make now could be the wrong one. What if I end up making it worse? I’m looking into a sweet little freckled face standing in front of me with missing teeth. He still believes in Santa Claus and the Tooth Fairy. He’s not even going to be seven years old until later this month.
Am I turning my son into some kind of monster? Am I making it worse than it is by forcing him into all those doctors and psychologists and therapies? Has it become a self-fulfilling prophecy? Does he think he has to act crazy because my actions showed him he was? Or would it have been so much worse if I hadn’t? Is this as bad as it is going to get? This is already a nightmare; the entire school administration has locked down the office and spent their afternoon in a fight to keep him and everyone else safe. How could it possibly get worse than this?
The fear is paralyzing, and the questions without answers will not stop bombarding my brain, but I have to do something. Once we are home, I park the kids in front of the television with some pretzel sticks before I pick up the phone and keep making the calls.
First, the number on the back of my insurance card to see which of the names Mrs. Crowley gave me are covered by our plan. I circle a few from the list school sent home in Nicholas’ folder, then start calling the ones that will accept us. Most send me straight to voicemail, after a warning to call 911 if this is an emergency. Is it? No, I don’t think so. They couldn’t send anyone to help me get a psychiatry appointment, could they? I continue to move down the list. There are only four names that both matched the guidance counselor’s recommendation and take our insurance.
My hands are going through the motions, but my mind is too preoccupied to form coherent thoughts. I don’t have it in me to form an entire prayer, so I just keep repeating the two things I need most until someone answers the phone.
Strength and clarity. Please. Just strength and clarity. Give me the strength.
Press one if you are a new patient. Beep.
It’s finally ringing.
“I need to make an appointment for my son. Today, please.” I tell the woman who is handling the scheduling for the psychiatrist’s office exactly what the guidance counselor said, that he was in danger of harming himself at school and that he should be seen right away. It all pours out in one breath.
With less urgency than I think is warranted, she asks about his current state, and I have to admit that he seems to have calmed down significantly. I haven’t personally witnessed any of the behaviors his guidance counselor described. She asks me if he actually attempted to harm himself or only made the threat. I believe there was actual intent. He had the scissors, but again, I didn’t see it. All I can do is repeat what his guidance counselor told me.
“She did say she thought treatment was necessary immediately,” I stress.
“Our next available appointment is in June.” She is unsympathetic. She has an office full of patients with more immediate needs.
“That is three months from now.” Does she intend for our family to live in limbo while we wait? He will have to get through the rest of the school year before June comes around. How do we do that without any help?
She puts us down for the appointment and repeats the same thing that the guidance counselor told me about taking him to the hospital if he has another episode in the meantime.
I stare at the phone for a minute while the bile threatens to rise up from my stomach. The kids seem fine in the other room nibbling on their pretzels and watching cartoons. Now I have to tell Eddie. I dial his number, and when he answers I go through the whole story, as calmly as I can.
He is silent for so long that I think we might have been disconnected. Then he simply asks, “What do you need me to do? Should I come home?”
I peek into the living room at the kids perched on the sofa with their snack in brightly colored plastic bowls. It’s a good question. What would I expect him to do once he got here? At the moment, it doesn’t even feel like I’m really doing anything out of the ordinary. There’s only one more hour to go before five o’clock, the regular time he’d be leaving for the day.
“Um, I guess not.” Is what I say out loud, even though I’d rather scream, “Yes, idiot, are you serious? Come home and hold onto us, and do not let go.” I have no idea how to answer anyone honestly about anything anymore.
“Three months, huh? That doesn’t seem good.” His voice pulls me back to reality.
“Yeah, three months. That’s what they said.”
“Maybe you could try to call the church. They might know something we don’t about some kind of resources in the meantime. Or you could at least talk to them about what to do now while we’re waiting,” he suggests as if a theology degree can solve this. I’m not sure why I am the one who has to make the call. Although, I suppose it’s as good of an idea as any.
“Okay. I guess I’ll try that then,” I tell him as we hang up.
I was hoping talking to Eddie would bring more comfort than it did, and I start to realize that it isn’t his fault, but there really isn’t any comfort to be had right now. He can’t make this better and maybe that means no one can. My hand is shaking so hard as I dial the number for the church that I have to hang up and press the buttons a second time. As the phone starts to ring once more a deep sense of dread overwhelms me because I realize that someone I actually know is about to answer, and I have no idea what to tell the receptionist, whom I’m going to have to face again on Sunday.
“Hi.” My voice sounds so hoarse and distant that I barely recognize myself. I can hardly force the words out. The ones I am saying don’t really make sense. “This is Stephanie. I just need to. Please. Can you get? I think it might be an emergency. Well, they told me it was. It doesn’t seem like it now, though. I, I think we really need a pastor?”
“Ok, sweetie. I’ll find someone. Hold on.” In the silence the stress of the last two hours catches up to me, and I can’t hold the tears back any more. By the time the children’s pastor answers the phone I’m sobbing so hard that it is impossible to breathe, but I try to focus on telling him my story the same way I just told it to Eddie.
“They said he needs help right away, and I don’t know what to do.” When I finally finish explaining what happened at school, my entire body is convulsing.
“Wow. Well, I can certainly see why you felt the need to call. You are doing the right thing reaching out for help,” he assures me. “Unfortunately, something like this is really beyond our capabilities for counseling here at the church. In this sort of situation, we’d recommend Nicholas sees a child psychiatrist as soon as he can, someone who might even be able to prescribe medication if he needs it.” I tell him we do have an appointment, but she can’t see us for a while.
“That’s very good. I’m glad you were able to get an appointment. It sounds like you are doing all of the right things. Would you like us to add him to the prayer list in the meantime while you’re waiting for that appointment?”
“I, I don’t know.” He means well, I know, but it feels so hollow, and it never occurred to me until this moment that it could hurt to have a name added to a prayer list, but if we add his name then people will start asking why he is on it. They will want to know why they should be praying. Then what am I going to tell them? Will they pray for him out loud at the same time that they silently pull their own children away from the little boy who now might be a danger to them or their children? How many more friends will that cost him? If the kids at school think he’s weird after this, his friends at church are the only ones left to offer any peer connections.
“I think we’d rather keep this information private for now if you don’t mind,” I answer after a minute.
“I understand. But I will certainly be praying for him myself while we’re waiting. Perhaps they’ll have a cancellation and you can get in sooner than you think?” He tries to offer some semblance of hope. I wish I could feel it.
“Yeah. Maybe. Thank you.”
“Any time.” I hope to God there will never be another time like this one, but I can already feel that there will be.
It’s too much. Maybe I shouldn’t, but I have to tell someone who actually gets it before I break too, so I sit down at the computer and type it all out. I send a long S.O.S. out to the group that Anna put together. I need help. Actual help. I need someone to step up and do something real, right fucking now, not three months from now, and not just prayers and kind thoughts without actions behind them. I don’t know how to get through this one.
Almost immediately they are there. Jessica’s adult daughter has autism, and she reaches out with love and practical support and advice. She offers to connect me with other parents who have needed to make the decision to hospitalize their children if I want to talk to someone who has been there and come out on the other side. Nicole is a therapist in her professional life. She sends me a private message. As I start to read it, the door opens. Eddie decided to come home early after all. He sits on the sofa between Nick and Abby and silently rubs Nicholas’ hair while he helps himself to a pretzel from Abby’s bowl. I nod at him, then turn my attention back to the computer and the message waiting for me on the screen.
Hey. I can’t treat Nicholas, since I’ve never met him, so this is not professional advice. I’m glad to hear that you’re seeking treatment for him. I hope you also consider it for yourself. But I am reaching out to you as a friend. I see you are in crisis right now, and this is what we are going to do to get you through that until you can get to those appointments. It sounds like you are asking for a focus while you are waiting.
She is careful with her phrasing, the same way my mother always is because she doesn’t want to lose her license for just trying to help a friend. She adds disclaimers and clauses like “some people have found it helpful to” or “some of the research says” and never directly tells me what to do. I do everything she implies could be of any sort of benefit.
We repurpose his beanbag chair and buy a fairly indestructible photo album, the waterproof plastic kind meant for infants to chew. Then we transform a small corner of Nicholas’ room into a “cocoon” with soft blankets and cuddly things where he can sit in the beanbag and look at the pictures of family and friends when he gets upset. Now there is a designated place to go: a safe, soft place to hold him when he doesn’t know where to put the feelings. The photo album is supposed to pull him back to reality and to be a physical reminder of all the people in his life who love him and are happy he is here. These people would be sad if anything ever happened to him. I talk to his teacher and his guidance counselor and we create an identical cocoon for his classroom. All of the children are welcome to use it, but we all know that it’s mostly for Nicholas.
As we wait for his appointment, I’m concerned how his behavior is going to affect his relationships with his peers. At school Mrs. Crowley offers to do a few empathy trainings for the other children in his classroom. They can also give him more time on the swings, which seem to do wonders to calm him down, or they can have the custodian pull him out of class for one-on-one mentoring and so that he can do heavy work, like push the bucket of mop water. The custodian is a retired grandmother who took on a part-time job cleaning the school, she would love to work with him. It might help him focus.
His teacher is concerned because he can’t concentrate and his grades are suffering, not that they were stellar in the first place. Frankly, I don’t care about his report card. We are trying to save his life. The alphabet will still be there next year, but I’m getting more and more worried that my son might not.
Tucking him into bed on Thursday night, his eyes are closed and he whispers, “Mommy, why do people have nipples?” Kids are curious about the strangest things.
“Oh. Those are for mommies to feed babies.”
“Do boys need them?”
“I guess not really.”
“Then can I cut mine off?”
The words freeze me in terror, but I try to respond calmly.
“No, honey. That would hurt very bad. Why do you ask?”
“I don’t know. I just think I want to. You know that blonde girl on the commercials? She talks to me sometimes. She told me I should try that. Good night.”
Was that enough to take him to the hospital? I don’t know what constitutes intent. Where is the line between a six-year-old asking his mother an innocent question and the time mine decides to pick up a knife?
That night Eddie and I sit up discussing options. How do we stop him if he tries something violent at home?
“I mean, I don’t know, there has to be some kind of training, right? They teach hospital workers how to restrain people, what are we supposed to do?”
“Martial arts, maybe? But I feel like it would take a long time to learn, and I don’t want to hurt him.”
I took a year of karate lessons when I was younger. In that year we learned how to block and throw punches, a few specific kicks, and broke some boards. There was no instruction about how to safely restrain a violent child without hurting your attacker. There is also no extra time or money to devote hours each week to classes at this stage of our lives.
“Handcuffs? Is that awful? I’d hate to use them, but it’s better than the alternative.”
“I feel like those would hurt him, though.”
“We could buy the fuzzy kind,” Eddie shrugs.
“From the sex shop? Can you imagine? That’s exactly what we need, for him to go to school and explain to a teacher how we made him wear pink furry handcuffs when he was being naughty.”
“Could we call an adoption agency or a school and see if they have any trainings?”
“I tried that. They do, but they only offer those trainings to their staff. They won’t let us come.” It would be too much of a liability to teach parents how to physically restrain their own children. It’s understandable, no one wants to tell an adult to use force on a child. But it leaves us in the precarious position of needing to protect him and everyone else in the house with absolutely no idea how.
“I don’t know, man. I’m out of ideas. Maybe we can find something on the internet?”
A few poorly lit YouTube videos become the only crisis management training we receive. Wrap your arms around him from behind, locking your hands, they say. Keep your own head tilted to avoid breaking your nose when he starts to flail. Widen your stance to keep yourself stable. Eddie makes me practice on him, but it’s easy for him to escape my grasp. My arms are barely long enough to lock the way they need to in order to keep him in, and he’s stronger than I am. One day Nicholas will be that big, too. Hopefully it will never come to this.
“Don’t worry,” Eddie tells me. “Nicholas is still little, and he can’t control all his motor skills. You can hold him. You’ll be fine.” Sure, probably. But for how long? And what are Abby and Penny supposed to do when their brother is too big for them to hold this way?
All I Never Knowed: Mental Illness, A Mother’s Love, and a Broken System by Stephanie Giese is available for sale on Amazon.
All I Never Knowed is the true story of the Giese family and the fight for their oldest son as he wrestles with severe mental illness. Written at Nicholas’ request and told from the perspective of his mother, Stephanie, the reader travels with the family through over a decade of navigating the children’s mental health crisis in America from the inside. The Gieses share how they sought treatment, found resources, and discovered coping strategies along the way.
An intimate, emotional story that will make you laugh, cry, want to throw things, and hug your family, All I Never Knowed is the sort of sincere and candid dialogue that stays with you and just might lead to real and lasting change.
About the author: Stephanie Giese is a certified elementary school teacher and mother of five. Stephanie is the author of the parenting memoir “All I Never Knowed: Mental Illness, a Mother’s Love, and a Broken System,” which is the true story of the Giese family and the fight for their oldest son, Nicholas, as he battled severe mental illness. More of her writing can be seen on her personal blog, Binkies and Briefcases. She has been a regular contributor to local magazines in the Central Pennsylvania area and national websites such as HuffPost and Good Housekeeping. Her work has appeared in the Amazon best-selling humor anthologies “I Just Want to Pee Alone” and “You Have Lipstick on Your Teeth” and has been featured on The Today Show’s blog. Her first children’s book, “The Cookie Jar Parable” was published in 2014. She is also featured in the anthology “Will Work for Apples.”