The elevator up to the 7th floor was slower than I expected. I squeezed my son’s favorite stuffed dinosaur tightly against my chest, it’s bright blue cloth reflecting off the shiny grey elevator walls. He had just been admitted to the hospital the night before, and my head was pounding from the 13 hours in the ER. Technically, this place was a hospital.
It was called a hospital, but its grey exterior was reminiscent of former Soviet office buildings. The view inside was no different. Inside lacked the bright painted walls I had experienced in other places. Void of hallways named after exotic animals cleverly used to disguise the pain and suffering that possibly existed behind every door. In this building, the pain and suffering just lived on every surface. I cried a shower of tears whenever outside of the hospital. Inside, I just felt ashamed, guilty, and so incredibly sad.
My thoughts shifted to the stranger in the elevator with me. A man, probably in his 40’s, carried a pink and yellow tie-dyed comforter and a small tote bag that appeared empty except for perhaps one small item. We both looked down, ashamed at our status here, in this elevator. Instead of exchanging looks of compassion and dual understanding, we both looked down at the floor afraid to engage in each other’s sad stories. I thought, he’s not just a man, he’s someone’s father. Quite possibly a really good father stuck in the mutual stories of parents with sick children.
My son, Dominic was only 4 and still in diapers. He did not speak except for a few barely recognizable words, yet, he had been admitted to a psychiatric hospital 3 hours from our home. The only psychiatric hospital in the state willing to admit him because of his ongoing seizures.
The website for the hospital said this was a premier and innovative psychiatric inpatient hospital. The lobby and waiting areas were a petri dish of every conceivable repercussion of the terrible mental health system in America. Underfunded and understaffed, patients came from all over the state either holding the hands of their anxious caregivers, or handcuffed to beds. A month after my son was discharged there was a shooting in the lobby.
Words from well-meaning people, never having been in my situation, consider this a failure of my parenting abilities. If I had just tried time out, or tried the right medication, the right education, the right doctor, the right diet, the RIGHT way to handle a child like my son, I could have avoided this entire tragedy. Maybe this is my failure to bear. You can’t judge me more than I have already judged myself. I am often swimming in negative notions of how my greatest personal tragedy is my inability to meet the needs of my children consistently. Their own tragedies are only a handicap in the race of life easily to overcome, or so I once believed.
My son, Dominic, was born in 2006 with deletions on his 15th chromosome. When he was 3 weeks old he was violently shaken up to 4 different times over the course of 2 weeks. One night he stopped breathing and his life changed forever. When admitted to the hospital he had multiple broken ribs, two broken legs, one broken arm, and his brain was bleeding into his spine from 4 different places. I wouldn’t meet Dominic until my partner and I became his third foster home when he was 15 months old. We eventually adopted him the following year.
When I finally got off the elevator a collection of family members had already assembled in a loose queue to enter the unit for the 1 hour a day they permitted me to see my sick child. I narrowly scanned the room. All of us, different ages and skin colors, battle-scarred and perpetually shamed by the medical profession and the community. The fluorescent light bulbs and uniform plastic black chairs reminded me I am in some sort of legitimate place, but the exchange felt like a back alley abortion. I know I had a right to be there, but every aspect of being there felt wrong. Everyone made awkward small talk, but never did we catch each other in the eye.
At exactly one o’clock the door opened and two security guards stepped out into the tiny waiting space with two more employees, perhaps nurses, but I couldn’t see their badges and they did not make any effort to introduce themselves. They reminded visitors that they have coin operated lockers for all personal belongings. Nothing can be brought onto the unit. My son’s stuffed animal is not permitted. I put it into a locker with my purse, cell phone, keys, and other nefarious items. It begins to feel like a prison. Although this is a common sense safety measure, I can’t help angrily think to myself that the brain is an organ of the body, much like the heart and the kidneys, and my son is sick with a chronic illness. I wondered if the prison feel of this institution is an unintended reminder of where children like my son end up in America after their communities, doctors, and social workers fail them. I filter this anger through every unspoken pore of my body. I looked down and rolled my eyes, and crossed my arms emphatically. It was all I could do to protest these conditions and still see my son.
I waited patiently to go through the metal detecting process, each minute cutting into the hour, the only hour, I had with my son today. After being cleared for entry, I sprinted down the hallway with my partner. I eventually found my son among the milieu of other children. He smiled when he saw me. He was only wearing a blue t-shirt and a diaper. His diaper was heavily soiled. I asked one of the many available staff of mental health support “counselors” for a clean diaper. I picked him up and threw him briskly on my hip. My anger reached a boiling point.
I don’t want him here, in this…place. I held back the instinct to run with him to the elevator and straight out of the hospital with his tiny arms wrapped around me. I could take both of us away from this place, forever. I could buy a Volkswagen VW van and drive through the forests of Canada, stopping only to eat vegan on deserted campgrounds. I think of myself in this fantasy, in a loose fitting cocoon maxi dress that coughs up in the breeze as I delicately, exquisitely even, handle homeschooling and doing laundry by hand. It’s really a pathetic fantasy whereas I can magically handle all of my heavy emotions and trauma enough to handle the heavy emotions of my traumatized child. The fantasy isn’t about running away as much as it is about escaping reality and envisioning a life without the barriers of anxiety, poverty, failure and sadness.
Instead, I tried to change his diaper on his bed. His backside is dirty from dried poop that had traveled up his back stuck in tiny dried spots on his shoulder blades. I said, unapologetically, how could this happen? I asked one of the random available counselors to point me to the shower. After Dominic’s shower I loudly inquired why he hadn’t been assigned a 1:1 caregiver as I requested.
One of the counselors told me he doesn’t know, and runs to ask a nurse, while another counselor is quick to say, “None of us know why he is even here.” I wanted to tell them about the only 2 hours of sleep he gets a day, or the hours of rages where he won’t look you in the eye, how everything he touches gets thrown to my forehead, or aimed at a light fixture, how I have a wall covered in food, how I cry every day because I am so unprepared to handle it, and how I am so alone and broke and utterly broken inside. His comment solidifies my failure. I can’t even find words to say anything in response.
The nurse finally appeared from some sort of walled area. The doors behind her slam closed really loudly and the locks behind them even louder. She says the doctor wanted to speak to me, and that administration will not authorize a 1:1 because of the cost.
Although, she said, they were having great difficulty because he wandered around all night and was quite destructive. I say, which was a complete waste of breath, that I wanted to try and advocate for the 1:1; my son is, after all, a developmentally disabled 4 year old with a seizure disorder. She cuts me off immediately as if the final word has already come down on the issue. She suggested I take some well earned time to take care of myself, and to think of this hospital stay for my child as a kind of respite for me.
The psychiatrist was a small-framed man in his fifties. He wore a salmon-colored polo shirt and loosely pleated khakis. Before we could share any pleasantries he immediately told us he doesn’t believe my son has a seizure disorder. I remained silent, even though I knew it was not his medical specialty, and none of his business. He wanted to take him off all his medication.
This was a common reaction by new to us psychiatrists, and would become an annoying trend. We agreed. He would like to change his Zyprexa to Seroquel, take him off his stimulant for ADHD, and remove his seizure medication. Then, as quickly as we were introduced, he walked away. It would be the last time we would ever see him.
When I walked out of the hospital, tears poured down my cheeks. I walked to the hotel that would become my second home for the next 10 days. Away from my older son, away from my dog, and away from work. The experiment taking him off his medication would last only three hours.
I received a hurried call the next morning that Dominic was leaping from tables, screaming, pulling off his diaper and urinating over furniture, and was generally not acting human. They could not keep him safe. The children around him weren’t safe. It’s hard to imagine my 33 pound 4-year-old was any match for the teenagers on the unit. Still, I was told, he was too dangerous. Dangerous, but still OK to be returned to my care at the end of the week.
For the next 10 days, I arrived for that one hour without fail, gave my son a shower, cleaned up his mess, took his poop-filled clothing to be washed, and heard staff tell me how they could not keep him asleep, or safe for the other children.
Every day I cried into my sweatshirt sleeve going down that dirty elevator back outside into the beautiful September weather. Day after day nothing changed as they adjusted medication. A social worker called on day 3 and encouraged me to find resources to help Dominic in my county of residence, as if I hadn’t already thought of it.
Eventually, the psychiatrist decided to discharge Dominic back to my care. They did manage to change his Zyprexa to Seroquel, but neither medicine would turn out to be effective for treating Dominic’s violent outbursts. Dominic did start sleeping more at night, which improved our family’s lives exponentially. All of this at a cost for Dominic, who continued to be the person who caused the most chaos in my life, but who had the biggest burden in life to bear.
I have been seriously asked to give up on him 8 times. The only solution left, I have been told, is to just voluntarily place him outside of our home. I have been told every time in the same breath to not feel guilty. We are all just trying to survive. I often think if my son had cancer would the only options for survival be the same?
Survival for any parent should never mean giving up your child to be institutionalized as an option for getting a good night’s sleep. I am grateful for the staff at every facility my son has been admitted for acute psychiatric care, still too often it feels this journey could be less bumpy, less scarring and more normalized to ease the shame and guilt for parents seeking help for their children.