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Timing: Grace in the Time of Corona

by | Oct 11, 2020 | Autism/Disability, COVID-19, Divorce, Grief & Loss, Midlife and Beyond, Motherhood, Obama/Politics, Spirituality, Technology/Blogging, Uncategorized

Sometimes things don’t work out when and how we want them to because they aren’t supposed to do so. Sometimes the solution reveals itself is down the road in time. The week Tennessee and most of the nation’s shut down, we went from three personal assistants/respite workers for Grace down to one.
 
This happened to a lot of families, and worse they had no help for their loved ones with special needs. Like me, this affected income. Some families felt it was too risky to have workers continue to come into their homes, others, like us, had their workers quit due to the pandemic. Both understandable circumstances.
 

In June, I finally realized that I needed to relieve our one worker of one of her days. As we all learned personally or learned of others’ challenges, and as my chiropractor said months ago when I lodged in a hotel for two weeks in April because our washer overflowed, necessitating a condo remodel:

Life doesn’t stop happening because of the pandemic!

I began looking for an additional essential worker in June and finally threw in the towel in September. This isn’t conducive work for these risky times. I’ve carefully weighed that my emotional, financial, psychological and physical health and that of Grace’s, too, outweighed the risks. That made finding a worker more challenging because we are moderately conservative in our approach to living with the virus threat. We needed someone with like minded lifestyle choices.
 
Letting our one worker go left me with 2.5 days of coverage only. Plus Monday and Tuesday mornings were lost potential work time due to working with Grace’s excellent behaviorist for 2.5 hours virtually.   
 
The GOOD NEWS is that networking performed late summer paid off in that a former employee realized she had a friend who would be a perfect match. We are excited to bring on a new worker early November! It took time, patience, and acceptance and making do to get to now.
 
I acknowledge that we are fortunate to have been accepted, in 2017, into new state program to help support families like mine when there is still a waiting list of others who also need help. And, much about our circumstances have been and are fortunate. A good portion of my work in public policy with a state nonprofit representing the needs of families and individuals with disAbilities is championing the state to do the right thing. They have in some instances, they haven’t in others, and haven’t done enough in yet other cases.
 

…Nature has been our soul salve during these strange times. We get out and immerse ourselves daily. Two of pictures here capture Grace in one of the many rotating parks and greenways and Natchez Trace Parkway weekend day-trip getaways we take. On the two weekdays and afternoons she’s not working her nine-hours-weekly in the backroom of TJ Maxx, she chooses her schedule. Shown in the one picture: sofa lounging with iPad* and the other, working with her behaviorist, virtually, on some basic skills.**

Take heart, friends. We will get through this time eventually. It has much to teach every one of us. It’s taught me greater acceptance of what is. We get to choose our attitudes of bitterness, anger (hard not to be at politics, currently,)—the emotions that literally eat us—or acceptance, patience and love. The later is also challenging during these times of great contention. But love will see us through it. And, we need a whole lot more of it within ourselves and within the systems that have helped create the circumstances of which this pandemic is only a symptom.

…………………………….
*iPad time—oh how I wished for such a device in all the growing up years we did not have one. (Such was not yet invented!) Yet, the reality is that an iPad or a television are all that some individuals with intellectual disAbilities have for entertainment, if they are fortunate to have them. Our state’s ECF CHOICES program, referenced above, is a long-term cost-saving measure for families like mine. If an individual is engaged (which does not mean iPad, tv and sofa time all day,) they can usually avoid mental health crises that too often arise when school ends forever. Their physical health is better, their parent’s well being and lifespan, likewise. Grace’s current personal assistant is also her job coach. The program provides job coaching. Without it, Grace would be unable to work.

**basic skills—an advocate friend once noted that just because your loved one is developmentally delayed doesn’t mean they can’t continue to learn. I sold all the puzzles and gave away all the picture communication symbols when Grace and I moved from the house in which she was born. She was 16. I thought she’d no longer need those symbols and well, she never really showed interest in the puzzles. At 26, she’s begun to click with basic academics and she chooses to work puzzles daily. My friend was right

…Which circles us back to the subject of timing. And, patience. May we all foster more of it, coupled with love in addition to acceptance of the things we cannot change, supplemented with the  motivation to change those things we can.

Namaste, —xxL