RESILIENCE: SELF CARE IN THE AGE OF COVID-19

 

S2C, Spelling to Communicate, I-ASC

 

These are interesting times, aren’t they?  They are very difficult for some and oddly refreshing for others.  While it’s mostly an inconvenience to have routines and special plans disrupted with little warning due to a global pandemic, people find opportunities to seek and enjoy some of the “perks” of isolation in one way or another.  For some, it’s because they find themselves with fewer responsibilities and more time on their hands to do things that bring them joy or peace (or whatever they are lacking), or so much time on their hands that doing these activities become a necessity; others find themselves with more responsibilities in isolation in a full house and no shortage of work, so they carve out time for specific perks.  These perks are “self-care”.   

When I’m not hearing about COVID-19 nowadays, I am hearing that we should “practice self-care”.  It’s a recurring topic for parents and caregivers in isolation, but I wonder, doesn’t everybody need to practice self-care, even those who are already cared for or assisted by others throughout the day?  How about those whose primary worries right now are about where to find their next meal?  How are they keeping it together?  Do they even think about self-care?    

Self-care is a deliberate action we take to deal with a need that contributes to our mental, emotional and physical well being.  But all our needs are different.  When our thoughts escalate from “I want to feel x” to “I really need to feel x, or else…”, one must take the time out to do something about it.  In the age of COVID-19, our lifestyles and environments have changed drastically and the results we seek from practicing self-care may be feelings of order, safety, security or confidence. Sometimes we just need to put our discombobulated brains on pause or recharge our inner batteries so we can manage another day or two without falling apart.   But practicing self care is not as easy as it was a few (very long) months ago, because our options are fewer.  Due to the physical distancing restrictions of our current situation, most of us are need to find new methods to provide us with the feeling or result we seek.  

Our community is resilient to begin with and most people within our community know which self-care rituals have been effective for them in the past; however, the recent sudden changes to our daily living prohibit people from engaging in their usual routines.  Vulnerable persons in particular are experiencing an unfathomable level of barriers, yet their resilience prevails more than ever.  What I’m witnessing in the nonspeaking and greater disability community is a creative growth spurt when it comes to finding solutions for expanding resilience. 

I’ll admit that I don’t mind the COVID isolation as much as some others do. Isolation with my family keeps me very busy.  I’m trying to stay grateful and positive, but I can easily lose motivation.  I have so much to do and I am happy if I get stuff done.  My go-to self care strategy may be unusual for many people.  So here it is:  I am dressing up to stay at home.  When I am clean, wear proper clothing, put on some makeup and style my hair, it instantly changes my frame of mind and I become productive, proactive and organized.  I swear, this does more for my mental clarity than an hour of meditation.  Even wearing shoes helps.  I realize many of my friends are rejoicing in being able to work from home in their pyjamas or athletic clothes these days.  For them my thing is totally not their thing.  But I need this thing!

The critical question to ask yourself is what do you need?  What is it that you are craving most, missing most, during this volatile time in history?  Where’s the void for you right now and how can you creatively fill it while staying home?  What do you need to feel like you have a grip on life?  

Some people have a guilty pleasure, like switching off the brain and switching on the tv to binge on programming that isn’t too thought provoking; some need grounding through mental stimulation and set aside time for audiobooks, lectures or TED talks; some need order and carve out time to purge and organize.  One friend has re-introduced an old family ritual into her home that brings them a sense of comfort.  It’s easiest for me to brainstorm ideas for people whose lives resemble mine – the busy ones juggling work, family, homeschooling or supporting distance learning, and managing the endless cooking and cleaning that comes with a full house, 24/7.  But what about people whose lives don’t look anything like mine in this crisis?   I asked members of our community to share their very different perspectives on the matter with me.

NONSPEAKERS: YOU’RE LISTENING.  ARE WE LISTENING TO YOU?

I thought I had come up with a wonderful self-care plan for my kids, but it turns out I got it all wrong the second I decided to single-handedly come up with a self-care plan for my kids! Nonspeakers, particularly those of you with significant sensory and motor issues, will surely have different ideas than I do about what you really need to help you at a time like this.  What is self-care for you?  What do you wish to tell your primary caregiver or CRP (Communication and Regulation Partner) about helping you achieve a sense of order, calm, clarity or whatever it is you need right now?  I asked around, starting with my son, who has no problem being brutally honest with me. 

William has been writing a lot about his feelings during these frightening times and it’s been clear to me that he is experiencing a lot of anxiety, especially when school was first closed in March under the state of emergency measures.  “We (disabled) will always stand safely away from harm when we sense it is near, but without an understanding of what a virus does and how it transmits I am afraid my senses cannot be relied upon to protect me”, he worried.  He did try to learn more about the chemistry behind his anxiety, which helped.  In addition to understanding how worries affect his body, I incorporated a lot of activities to his new school schedule that are known for calming people: offering choices of yoga, meditation, purposeful motor tasks and, his favourite, oodles of snuggle time.  Still, I noticed he would manage to slip away when he could and do his own thing.  I didn’t mind because I’m used to it but, notably, doing his own thing wasn’t on the schedule.  Does this sound familiar?

 

S2C, Spelling to Communicate, I-ASC, Autism

 

I am informed and guided by William and self-advocates in the nonspeaking and larger disability community.  I’m cautious not to lead or influence his ideas.  And yet, it is still so easy to continue to make decisions for my son without his input, because I am accustomed to doing it for years.  Let’s just say that if I didn’t ask for his input in writing this blog, I may not have found out how badly I had erred in planning self-care for William without him!

“I need my soft music and my videos.  They help me stay laughing and happy”, he told me.   

Sweet!  I have noticed William’s been finding light piano music on YouTube to listen to while he stims or plays and he is also enjoying cartoons that always made him laugh.  These are things he finds and enjoys by himself.  

The conversation then took a different direction when William was asked what self-care is for a nonspeaker.  “Self care means nothing if we aren’t given the option to self direct the thing we want. My choices mean a lot to me. I sit around thinking all of the time therefore I am making plans which are never going to come to fruition if no one can see that I have conceptualized my own plans for my self care.”

Oops. What does this mean?  “It means, abolish the mom-directed coping strategies. Give me more say, not just choices from your pre-selected list.  I know that is maybe not what you wanted to hear.”

He’s a fluent communicator and he’s changing all the time.  He’s right.  I shouldn’t give him a menu when he can tell me what he needs.  If I have learned anything about nonspeakers, it’s that they spend a lot of time thinking and know themselves very well.  I apologized but added, that as a mother, offering choices may be what I would also do for a typically developing 11-year-old child of mine.

But William quickly reminded me, “that child would have the ability to tell you that they didn’t like the choices.”

Of course they would!  What about the time before he could communicate openly  – how could I know then what he would choose for his own self-care?  “You wouldn’t know”, he agreed and added, “I did get very frustrated back then.”

For nonspeaking friends that are not currently in the open stages of communication during these strange COVID-19 isolation times, William recommends his self-prescribed self-care plan of listening to calm music and watching happy videos.

Other spellers that were able to tell me about self-care recommended the things that work best for them: “time to stim”, “fresh air”, and “I need movement”.  What should not come as a surprise to us is that nonspeakers’ self-care practices are their direct routes to self-regulation

Who else is out there?

S2C, Spelling to Communicate, I-ASC, Autism, nonspeakers

ALLIES WITH IDLE HANDS

My friend, Jenny* is a professional, and a disability and accessibility rights self-advocate.  She heads an international non-profit corporation providing opportunities for the disabled in underdeveloped nations.  She also happens to be Blind.  She is normally quite busy, travelling, connecting with people and doing her work around the globe.  Presently, and until travel restrictions are lifted, Jenny is living abroad, or rather, “stuck” abroad, in Europe, alone in lockdown isolation.  She has no dependents to take care of nor loved ones nearby for whom she can care or from whom she can receive assistance with accessing the things she requires to survive during this state of emergency.  She’s alone.  For her, life has gotten very quiet, and very difficult.  The neighbour that is usually helpful is staying away in keeping with social distancing recommendations.  The barriers, on account of her disability, are countless during this crisis.  Agencies that should be providing her with support are understaffed and also trying to navigate through an unprecedented crisis.  

I communicated with Jenny about her current situation.

“It’s been really tough at times and really good at times.  I’ve struggled to get food and I’ve been struggling to get social services to pay attention and make a referral for me to get food packages”, she told me.  “Making sure I have enough food and finding where to get food … has been the most stressful thing.”

Last week Jenny had to cancel a scheduled grocery delivery because her bank account was hacked and she did not have her replacement card mailed in time to pay for it.  “Getting a new delivery slot takes weeks sometimes”.  

Jenny runs on resilience.  Every new twist in her isolation story presents a learning curve for her.   “I’ve had to find new ways of doing things.  The food available to me now, I don’t buy them usually because they are harder for me to prepare.  For example, I never buy potatoes because I can’t cut them, but they last long.  And the same with carrots.  So now I am having to find ways to prepare potatoes and carrots.”

The current conditions have aggravated Jenny’s physical state.  “I can’t go out on my own and I’m not exercising in my apartment, as I don’t have a lot of room, so it’s giving me back problems.”  

“On the other hand”, she says, “we’ve had really sunny weather.”  Jenny then speaks of her resilience and reveals her self-care strategies.  “I open the window. I put on some music. I made a little buffet style of breakfast one day, like a nice hotel style breakfast.  I read.  I try to listen to the scenes on the live cams like the beach.  For self-care.  That’s the most important part.”

Jenny, like William, is very self-aware and knows what she needs. “Being alone”, she tells me, “it’s hard on your mental health.  You don’t have anyone around and that can be really hard.  And the boredom – when you don’t really have anything to do the mind gets going so trying to have a routine every day and trying to do certain things every day and try new things”.  

I am delighted witnessing Jenny’s self-care or “cheering myself up” as she calls it, on social media. She sometimes dresses up, puts on makeup, fixes up her hair and takes selfies for her friends and family online.  She requests recipes for the odd food items that have arrived in her food packages.  “I’ve enjoyed experimenting in the kitchen”, she tells me.  “I can make risotto, I can make spanakorizo, I can make both types of Greek coffee”.  And if this crisis lasts much longer?  “I do have a sewing machine and an iron on the list, for later on”, she muses.  

Jenny doesn’t seek 20 minutes in solitude like the busy moms I know.  She doesn’t need to disconnect like William does to sort out his feelings.  Jenny’s self care goals involve occupying her mind.  When things were at their absolute worst, Jenny sought audio-described exercise and was grateful for resources from I-ASC’s lists of free Edutainment, Online Learning and VAKTivities that were appropriate for the visually impaired.  She wants things to keep her occupied and people to interact with.  

It’s easy to see that the differences between the experiences of those with too much to do and those with too little to do are extreme.  And then there are many who are really struggling to survive.  As we go into another month of physical distancing you can ask yourself what you need most in order to function optimally or cope with the lifestyle changes.  

Have your needs evolved in the last two months and what are your self-care strategies? 

 

* Jenny is a pseudonym

Giorgena Sarantopoulos is an S2C Practitioner and a member of the I-ASC Leadership Cadre living in Ontario, Canada

Her S2C Practice is called Good Point. Giorgena received help and editorial guidance on this blog from her son, William.

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy and research.  I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C) with the hope that other methods of AAC using spelling or typing will join our association.

Posted By on Wednesday, May 6th, 2020 in Advocacy,Education,Families,Motor,Nonspeakers,S2C,Spelling to Communicate

2 responses to “RESILIENCE: SELF CARE IN THE AGE OF COVID-19”

  1. Lori Anne Lanigan says:

    Thank you for writing this. It certainly has given me pause to think about how I give my son a “menu” of choices all too often. Thank you William for your valuable input. You’re a strong and insightful advocate.

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