EMOTIONAL HEALTH IN ISOLATION

SUPPORTING SOMEONE WITH DISABILITIES AT HOME DURING COVID-19

BY JOHNNY PAYNE MED CPD

A study from the University of Wisconsin revealed that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers, and struggle with frequent fatigue and work interruptions. During times of COVID19, with required isolation and social distancing, these challenges can be even greater. Many parents and caregivers may struggle to know how to care for and support an individual with a disability with whom they are isolated and sheltered when they themselves are struggling to be emotionally available.

Feda Almaliti, Vice President of the National Council on Severe Autism, recently noted in an interview with NPR, "It's the unknowing that is most difficult. We don't know when it's going to end. We don't know what's going on, and dealing with autism at home makes it even harder. The only support that I have to get through it is through fellow autism parents. We have Zoom calls, and we try to find humor in this thing. We're just trying to lean on each other to get through. Because I can't do it alone. Nobody can."

Almaliti is mother to "Mo", a 15-year-old with severe autism and limited verbal ability. She notes that Mo does not understand what is going on right now, and why he cannot go to school, one of his favorite places. "He's incredibly confused, in this time when we're all confused, but he really doesn't understand it." Almaliti tearfully relates to isolated parents and caregivers of individuals with disabilities saying, "They're doing the best they can every day. But I don't know how to accurately convey, it's really hard. It's really hard because I almost feel like nobody hears us. Because my son doesn't really talk. And I'm supposed to be his voice. And no one's listening to what's going on for our families. You know, no one gets that we are just as vulnerable as coronavirus people".

Closely caring for and supporting an individual with disabilities during social isolation can create strain in the close, trusting relationship between caregiver and individual. Managing daily stress can lead to better outcomes of the individual being supported, as well as better work and home environments.

Exceptional Parent (EP) magazine recently interviewed Margot Schulman on the subject of managing emotional health for caregivers and parents of individuals with disabilities who are isolated with their loved ones. Schulman is a speaker and author of the acclaimed Choose Love: A Simple Path to Healthy, Joyful Relationships. Her expertise has been featured on TEDx, RadioMD, and Talk Healthy Today. Schulman's work offers powerful tools for caregivers and parents of individuals with disabilities as they wres tle to sustain their mental health. The heart of Schulman's work revolves around helping people build a foundation of trust, first for themselves, and then trust in other relationships in their lives. As people gain awareness of and begin to accept their own weaknesses and strengths, Schulman says, they may begin to recognize other's weaknesses and begin to empower their strengths.

Early on in her career, Schulman worked at a soup kitchen in upstate New York. "I fed a lot of people, and it was a really intense job. It really allowed me to take mindfulness ideas and apply them to myself." As she described this job, she noted the hardest thing was managing the volunteers, not working with those who would come through to receive food. "Dealing with the volunteers was the hardest part. Girl Scout troops, older men, churches, people from all walks of life would come to volunteer. They all came to accomplish the same task: to make food and serve it to hungry people. I found that I had to recognize that every single volunteer had something valuable to offer. It was my job to find their value and to match them with a task for which they felt proud and to make sure the job got done. It was so rewarding to recognize each person's value. That was my job."

Schulman says we can look at ourselves the same way. We all have various parts that show up in ourselves in different times and situations. "If I read something that makes me angry, my inner teenager comes out and wants to lash out at them. When I'm scared, my inner child comes out and I want to retreat. I have all these personalities in me, all these parts in me, and like the diversely gifted volunteers who come to the soup kitchen to get the same job done. My job is to recognize that each part of myself has something valuable to offer. I have to find how each could contribute towards getting the job done."

The challenges we encounter during isolation in our homes or our workplaces can bring us to our emotional and mental limits. We all want to give the best of ourselves to those we support. Schulman suggests that giving our best starts by first recognizing our own emotions and finding ways to make our emotions constructive; to help them "find a job to do." Schulman admits this can be hard to do when we are experiencing overall high levels of stress. She notes, "I am not a mom of someone with disabilities, so I can only imagine what it may be like. Though, I do have struggles and moments of losing my connection to my children. I can imagine during more stressful, strained times, that a parent can easily lose the time and space to have a quiet and focused moment. Over time, it becomes harder and harder to come back to that inner truth, which is that I have been entrusted with the care of this unique and valuable person."

Schulman says that the more parents and caregivers can recognize and accept themselves, the more equipped they are to be their best selves for those they love and serve. "We must acknowledge ourselves first before we can really acknowledge those around us. Every day, we should say out loud to ourselves, 'I am doing the best I can, and I forgive myself for losing focus.'"

One strategy Schulman recommends is what she refers to as a "ding", as in the sound of the Tibetan bell which is often rung to signify the beginning of the practice of meditation. In this practice, the bell presents a cue for the mind to begin working towards focus and breathing, much like the ringing bell and salvation response in the famous Pavlovian experiments. In meditation, when we hear that sound, we know that it is time to begin searching out focus and turning our attention to our breathing. Schulman recommends finding a recurring sound in your own life that is a negative trigger for anger or frustration in the relationship with the person with which you are isolated. She shares that for her, the moment of raised arguing voices between her two young children is her "ding". "That is my reminder to take a deep breath, acknowledge my emotion, and remember what I have determined I want to be."

Our strong need for relational connection is fundamental to our emotional health. Even through the difficulty of physical distancing, support and relationships with others are vital to constantly feeling refreshed. Schulman points out a practical skill for relieving stress and maintaining relational connections she calls "clearing". This tool allows us to hold space for each other, within a set time, and intentionally uncover stressors or other items which weigh heavily on our minds, without any judgment. It may be as simple as hosting a regularly-scheduled phone call with someone you trust and feel comfortable. During the call, you might say, "here are 20 minutes, you can clear out everything that you're feeling without any judgment, I am holding a loving space for you." Schulman notes, this might be on a regularly-scheduled Zoom call, or a telephone call, and that a timer for the activity may be helpful. "Once the timer has started, just start talking and don't stop," she says. "Even if it feels uncomfortable. It can be 20 or so minutes without any judgment about any emotion that needs to be 'cleared out' including frustration, anger, sadness, or loneliness."

Having relationships can be difficult for many parents of individuals with disabilities. Many parents have a hard time finding common ground with others in friendships. It's hard to make that "ask" of spending meaningful time together. Parents may have many acquaintances but long for deeper and more open friendships. Asking someone with whom you wish to develop a friendship to schedule time for a regularlyscheduled "clearing" may be a great way to make a practical "ask" of developing and keeping relationships growing.

There are many resources we can tap into, including our local church community, a local autism center, support groups, or other online resources such as Parent to Parent USA.

Parent USA. Whatever our means to connect with others and to acknowledge our own strengths and weaknesses, it is vital that we maintain the kind of support for ourselves that we would want for those we support. Let's all begin the work of supporting others by treating ourselves a little better.

ABOUT THE AUTHOR:

Johnny Payne is the Mental Health Coordinator at the Orange Grove Center in Chattanooga TN.