When I was asked about a day in my life as a DSP, I was really unsure of how to answer. I sat at home in the evening and thought for a long time. Then the realization came to me. The thing is, there is no day in the life of a DSP; it is different every day and throughout the day. The scene can be the same as the day before and it still will be diverse. Supporting the same identical task looks completely different based on each individual need, as well as how someone’s day is going; just like any one of us.
We, the Direct Support Professionals, play numerous roles in people’s lives. In many ways we are in control of what people are able to do; they can’t just hop in the car and drive somewhere-we do that for them. DSPs are chameleons; we are always staff, but we are so much more. We are friends, confidants, nurturing figures, medical support before nurses, and chauffeurs. All these things we do look very different from person to person.
For instance, in a car ride one person has to sit way in the back because they struggle with a mix of behaviors in cars. Another person sits in the front with me and is learning to hear the engine begin to wind out. She tells me, “Ok now”, when it is time for me to shift.
Today as a DSP, we support people like we would on any given day. We help them with every aspect of their lives from the basic to the complex. Add COVID-19 to the mix, and the day can see even more challenges. Increased is the level of emotional support those we serve need. The strain of COVID-19 upon their lives is very real. Even the basic wearing of these bizarre masks are very upsetting for some of the women we serve and they try to rip off the masks each time they see us; they want to see our faces! For the home that I support in particular, we have a group of women who visit their family’s homes at least once a month. They have a lot of family involvement. That has been taken from them. We have adapted to the new normal and outside, socially distant, visits with their families are occurring. We do our very best to make sure people see their loved ones. What is hard is explaining why someone can’t walk across the street and hug their mother. For one, hugs are everything. For another, they don’t like hugs so it is a non-issue. Different roles for the same scene. They understand to some degree, but this is an anxiety producing situation and it is difficult for them not to be with their family. So, helping the women I support be happy is my measurement of success. I cannot consider myself successful without seeing them content. When I am with them, I put my whole energy into making sure they have joyful moments.
You cannot spend the amount of time we do with those we support and not feel close and show them the compassion they need in difficult times and in good. You spend more time with them than anyone else in their lives. When you think about that, how can you not hug them when they need you? When you find someone sitting on their bed in their room crying for their mother, I am the one there to embrace them. That is now, during COVID-19, and always. In anxious moments they need a familiar face and to feel comfort. The thought of not being by these women’s side is painful. Especially, with the current pandemic. In a few weeks, I will have to do just that; spend 14 days away from these women. I will be unable to support them through their lives. You see, for 29 days I thought I was dying.
On January 24, my fiancé and I were hit head on by another car. I went to the hospital with shoulder pain. I left with the information that I had a life threatening cancer. I did every test in the book and found that it was not the cancer they thought it to be. The doctors were wrong; the misdiagnosis I lived with for 29 days was wrong. What they discovered was an autoimmune disease and thyroid cancer (98% chance of full recovery).
The surgery to remove my thyroid will take me away from the women I support for two weeks. I am going to struggle. I don’t like the thought of them struggling through a situation I would normally be able to quickly resolve. I come into work every day putting myself at risk, but taking the best precautions I can. The thought of not being there has never crossed my mind until now. I am truly glad to be here every day. I don’t function just curling up and being sad. Being present for others brings me strength. It is a gift to be here with these amazing people. We, the DSPS, are part of something historic. The world has never gone through something like this. This is different and there is fear. I don’t want strangers to be there helping them through this experience. They need to be with the people with whom they are most comfortable. The gift is to be there with them. The thought of unfamiliar staff not understanding them eats me up. They thrive on the people that are familiar, and they have also become what is familiar in my own life.
Versatility is the name of the game, no matter what is going on in the world, when you support people of diverse abilities. Thankfully, I am a person that needs to be busy. In many ways we continue our days as usual. One woman safely continues to grocery shop with my aid. We wear our masks, and she sanitizes and changes when we return home. We have also become creative in figuring out what else to do with our day. We take drives, have picnics, paint and tie dye, do lots of art projects, and take bike rides through the neighborhood. We laugh together when public restrooms are locked and we discover that these ladies have never used an “outside bathroom”. Last week, we had a birthday car parade for one woman’s birthday. People from the office and other programs went all out decorating their cars. Even my fiancé came to be part of the parade. This woman felt so much happiness from this experience, even when her greatest desire was going to a trampoline park. We made do with what we had and she felt joy. I hope when the women we support remember this time of their lives, they remember the funny and different things we did, and not the fear, uncertainty, and distance from family. Instead of remembering that they couldn’t do their favorite things like window shopping or walking through the mall, I hope they remember walks in the park, lunch outside on a blanket, the smart and creative social distance experiences, and that they were still able to see their family even if it meant without a hug.
These women add joy and value to my life. Joy is different for each person. I love the way that one woman has a big heart and will give all of herself to others. Another is goofy and silly and wants to laugh all the time. Another has an unadulterated innocence while existing as an absolutely brilliant woman. I’ve learned about people’s amazing sense of humor. If you just listen, you can see their quirkiness. I can see how some like to playfully mess with people. If you pay attention, the conversations you have are amazing. For those who don’t know them, they might think they don’t make sense. Sometimes it’s not about the order of their words, but the whole statement; they’re saying a lot. It’s like doing a puzzle. A saying by Albert Einstein always sticks with me when I read someone’s support plan and it says “severely” or “moderately disabled”. Einstein stated, “Everyone is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid.” I believe this wholeheartedly. To me, every person we support is a genius. We just have to learn their language. Being able to learn what is going on in their heads and how they communicate, is a wonderful experience. Through this you discover how to take your time and discover people’s personalities.
Since I was 10 months old, I have been learning how to communicate in different ways and understand the depths of people. My brother, undiagnosed, had very unique needs. Growing up with him made it so that all I have ever known is how to decipher what is being said and what is actually meant. I am able to change my speech to help someone understand or feel comfortable. I am able to let people know I hear them. My own son, Keegan, has high functioning autism. He has come so far. When he was younger, something like “break a leg” would confuse him. He now can adapt and understand that not everything is literal. These unique individuals we support are human beings too and they deserve our time and full attention so they can be understood.
I often get home still laughing at something that happened at the home where I work. I have a close relationship with my coworkers and we’ll text one another about a brilliant moment that showed us even more depth to a person we thought we knew completely. I think about the birthday parade and how many people dedicated themselves to someone else’s joy. Oftentimes when I get home, however, there are thoughts about something that happened that day and how I could approach something differently, prevent something from happening again, and just simply improve someone’s day. Sometimes I’m online looking for clothes for someone I support. I find a pair of sneakers that I think will fit someone at another home and I jump on the phone to double check his size. Unrelated moments of my life seem to always bring me back to thoughts of the people we serve. This is AIM.