Before I became a surveyor/wannabe writer I was an in-home Behavioral Specialist. I stumbled into this career while doing my Secondary Special Education internship at John Archer (our local special needs school).
I was 20 when I started my internship and on my first day the teacher I’d been assigned to assist showed me around the school and introduced me to her class. Her students were between the ages of 17-21 years old (special needs kids go through grade school until they are 21) and most of them were higher functioning special needs kids, some even had jobs as part of their curriculum.
There was one boy who wasn’t though. He was dressed like any other 17 year old boy, like his parents took great care of his appearance. He even had a little gel in his spiked sandy brown hair. But he was sitting alone in the corner, separated from the rest of group, whacking a Jesse rag doll (from Toy Story) repeatedly against his mouth.
In a hushed manner the teacher pointed at him and said, “That’s Joey, but don’t get too close to him. He’s extremely violent.”
While he was about my height, the boy was very skinny and I found it hard to believe such a tiny person could be so violent that I wasn’t even allowed near him. And the fact that they’d basically written him off as a lost cause infuriated me. I couldn’t believe she was actually suggesting I ignore him and only cater to the more functioning students.
Like the rebel I thought I was back then, instead of heeding her warning I immediately felt drawn to him. I was determined to give this poor kid some attention and understand what made him so “violent.”
So over the first week of my internship I observed him and learned as much as I could about him. Joey’s disorder was called “Cri Du Chat Syndrome” also known as “The Cat-Cry Syndrome” characterized by the cat like wail of the child at birth and the distinct facial features they all share. It’s a fairly rare disorder and when he was born there was very little known about it at all.
In that week I realized several things about Joey such as: his inability to feed himself or even eat regular food (his food had to be pureed like mush so he could swallow it without choking), his inability to use the bathroom on his own (he wore diapers and needed to be changed), he needed assistance to walk most of the time (due to scoliosis so bad he had to have two metal rods inserted into his back to keep him straight), and that he was incapable of any form of communication. Also, like the teacher had warned he was rather violent, but mostly to himself. In fits of rage he’d bang his arm against his head, or his head against hard surfaces. He’d occasionally bite his own arm so hard it’d leave marks and would also dig his claws into almost anyone who came near him, but not me (at least in the beginning).
Everyday when the buses would arrive we ushered the kids outside and led them to their proper rides. I decided this would be my attempt at getting close to Joey and for the most part he seemed to cooperate better with me than I’d seen him cooperate with anyone else. Some days as he entered the bus, he’d even look back at me and smile. Even though I was doing very little to ‘help’ him, he seemed to appreciate my lack of fear in touching him. And so that became a routine. Every afternoon I’d hold his hand or arm for support and lead him to his bus, without the violence I’d been warned of.
My ability to not be effected by his aggression surprised the teachers and I soon became his one-on-one aid, helping with feeding, bathroom, speech (I tried to teach him sign language and get him to practice making the shapes of words with his mouth in front of a mirror), and anything else Joey required – even time outs. On those days where he was especially aggressive, we’d walk the hallways together and he’d almost immediately calm down.
As my internship came to an end though I wondered what would happen to him after I was gone. Would he go back to being alone and ignored? Would all the progress he’d made with me be lost because no one else was willing to take the chance?
It was then that I received a phone call from his mother. She told me that his bus driver kept teasing that Joey had a girlfriend at school and when his mother had asked for an explanation she told her that since his new aid had started walking him to the bus he was far more docile on the rides home and would even hesitate to get on the bus some days like he’d rather stay with her (her, being me).
His mother couldn’t believe this because she’d fought the system hard his entire life for the attention he deserved and like her son, was basically blown off at every attempt she made to get him one-on-one help. She wanted to meet me and wondered if I’d be interested in babysitting or working with him at home sometimes through a company they received funding from called ARC.
Knowing that my time with him was up at school I agreed, in hopes that my efforts wouldn’t be completely lost and also because with a child like that I imagined his parents rarely got a break. So I started babysitting him and while I watched him in his own environment he was different. He was more relaxed and he seemed more receptive to teaching in the comfort of his home. And at first his outbursts were far less common at home than they were at school. This drove his parents to seek additional funding to keep me in their home more frequently.
A company called Human-IM who places behavioral aids in people’s homes to assist with special need kids like Joey approved him for funding and hired me to work in home with him 40 hours a week although between babysitting and working I was frequently there far more hours than that. On a few occasions I even spent the night for the weekend so his parents could actually take a real vacation.
Over the next 3 years with Joey I taught him several things, such as walking up and down the steps with minimal assistance (as he had become far too heavy for his parents to continue carrying), using the shower hose to rinse himself off while bathing, how to hold a spoon once I’d placed food on it, and even some simple sign language so he could finally communicate with us in a way other than violence. I also worked with that violence and enacted a reward system, one that didn’t acknowledge unnecessary acts of violence, but rewarded his positive behaviors instead. As a general rule, people want attention. If you only react to positive behaviors than they are far more apt to act in a way that pleases you than one that results in them being ignored.
At first Joey accepted this change nicely, but quite a few factors started to play into its lack of effectiveness over time. Joey had a terrible amount of medical issues ranging from reflux disease & severe constipation to overactive mucus production that made him choke constantly and required special breathing machines. He was on an amount of medications I wouldn’t wish on anyone and while some of them worked, several of them seemed to only add to his problems. And his bodies near constant discomfort made him angry. I imagined myself in excruciating stomach pains, wishing I could scream out about my aches and not being able to and knew that I would likely become aggressive as a result too.
The older he got, the stronger he grew and the pinches and outbursts I’d once been able to tolerate eventually became too much for me (my arms and wrists are still marred with little moon shaped marks as a memory). I didn’t want to give up on a kid I loved like my own blood, but my effectiveness with him had warn off and I’d became nothing more than a punching bag in the end. I knew it was time to leave. His family would still receive funding and I hoped that someone else brave enough to endure the violence initially would be able to reach him like I once had. After 3 years together, we parted ways.
I don’t know why, but lately I’ve been thinking about Joey and my time with him a lot and I miss him. I haven’t seen him in over four years now, but I’ve heard he was put on a new medicine that curbed his aggression better than he’d ever been before and that he’s since moved into a group home with other adults like him where there is 24/7 supervision and aid. I hope he’s happy where he is and I hope his aids treat him as good as I did, if not better.
But of all the thoughts I have of Joey, one will always stand out over all of the others and still to this day bring tears to my eyes just thinking about it….
A few months into babysitting him I arrived one night while his father was carrying him on his back down the stairs into the living room. Joey had just had a bath and was in fresh Sponge Bob pajamas. His father kept saying, “Joey, Sarah’s here,” and I heard him making “Sssss” noises like he was trying to say my name. His mother waited at the bottom of the stairs and I stood in the center of the living room. When they reached the last step he slid off his fathers back and stood with his mother. He pointed at me and for the first time in the 18 years of his life said a full word. “Ssssarah,” he said with a smile on his face like he was happy to see me.
It touched me in an indescribable way for him to not only see my face and know my name, but be able to say it when his speech was so impossible at that point in his life. But it touched me even more to see his parent’s faces when they heard their son speak a full word for the first time in his life.
Knowing the impact I had on not just Joey’s life, but theirs was one of the biggest rewards I have received in life and it’s something I will never forget. I hope that one day I will see him again and that maybe, just maybe, he will still remember my face and my name.