We are on floor one of a children’s hospital in a wing called the behavioral assessment emergency department. It has now been more than an hour from the time my son turned left and my husband turned right. With three sets of locked doors between us I could still hear him scream.
“No!” he cried as his body crashed into the security doors.
He wanted out.
“Just sit on your bed and then you can go home,” the nurse said firmly, “I just need you to sit down. I need you to calm down.”
But he couldn’t calm down. He couldn’t sit down. His body wouldn’t let him.
“I’m sorry this is so hard to hear.”
That came from the social worker who minutes before found me just outside those security doors rocking in the motion of my breath.
“Does he have a taser?” I said as I glanced toward the police officer that was called to assist the nurses.
“There are no tasers and no guns allowed on his floor,” she assured me as if she had said that phrase one hundred times, “But they may need to restrain him.”
And just like that in the rectangular window appeared that police officer – now with gloves – with the nurse and the attendees and my son beneath them. But now there was a chair.
My husband had his head in his hands when she quickly brought me back to the room with three sets of locked doors between my child, who was now being restrained, and us.
“Save him!” are the only words I am able to push through my vocal cords.
The walls started to move close. Dread. It’s always dread. It hugs my chest like two boulders would if I stood between them. I can’t catch my breath. I place my hands on the table to steady myself. My husband puts his hand over mine.
“Breathe, Katy. Breath in and out,” he says because he knows this is a panic attack.
“I’m sorry this is so hard to hear,” she says, “I will check on you all in a little bit.”
It was at that moment I felt something move within my body. I knew that I will always remember everything as it was. All the sights. All the sounds. The helplessness. The blue latex gloves. The screaming. This powerful combination created within me a core memory.
Even things that are supposed to happen – things that need to happen – things that you know must happen in order to bring about a change in your child’s course can and will be immensely painful. This visit did not just happen. It was steps, therapies, calls, appointments, medications, observations, commutes, IEP meetings, and years upon years of paperwork that led us to floor one of the behavioral assessment emergency department.
The paper trail from the first mention our son has a life-long and serious neurodevelopmental disability from our foster care manager with the Department of Child Services should have come with a pair of boxing gloves. I had no idea the magnitude of the fight our family would enter. I had no idea what our soon-to-be adopted son would be up against. I never thought I would sit with other service providers and beg them to believe me. It took five years just to have a known diagnosis be documented, and even then, it was just that – a documented diagnosis.
Can you imagine how many times I have been asked what strategies I have tried, behaviors I have seen, services he receives, and what medications he is on? And then imagine answering these questions over and over to people in the medical and mental health field that have limited understanding of what your child’s diagnosis truly is – even to the point of needing to correct them on the actual name of the diagnosis. They have enormous amounts of compassion and empathy but limited awareness. Now pair all of that with short-staffed, overworked, and underpaid service providers for a child whose options are in all of our hands but whose hands are tied.
It was said to me that day from a child psychiatrist, as we both lamented over the state of children’s mental health services, that the state of Indiana is reactive in its approach to care. The Indiana/Ohio/Northern Kentucky region has nineteen active psychiatric facilities. Eleven of those facilities serve children as young as three years of age. Six of those facilities will not accept any child with an intellectual disability. Four of those facilities will not accept any child with autism. Two of those facilities will not accept any child with aggression or medically complex needs.
My son’s disability has a prevalence rate in school-age children that matches that of autism, yet I will tell you that options for my child are limited. There were only four beds total in the behavioral wing of the hospital that night. Four. And after your time in one of those sacred beds come to an end, you either pray you fit the requirements to move to a seven to ten-day inpatient program on the next floor, find an appropriate intensive outpatient program which will likely require you to temporarily move to a new city, or you heavily medicate and go home.
“This is why we are forty-second in the nation for mental health services,” our social worker shrugged.
She handed me a two-page printout of websites to look at with his discharge papers, along with instructions on the new medication.
“Remember,” the psych assured us, “You can always give more Benadryl.”
They unlocked the three sets of doors. We carefully put our son’s pants, socks, and shoes back on him. The psych nurse guided him to a wheelchair because he was too big to sit in the little red wagon.
They took him to our mini-van, watched as we buckled his sleeping body in his booster seat, said thank you, and turned around and returned inside.
Almost every practitioner I spoke with that day told me to prepare for more visits like this one. Because if it happens once, it will happen again.
Websites. Only four beds. More medication. Benadryl. An invisible disability that I see and hear and painfully feel each day. It is more than real to us and overwhelmingly real to him.
And with that, I drove my precious boy home in silence – preparing to keep fighting for him every step of the way.