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How the Coronavirus “Levels the Playing Field” for Parents of Children with Autism…

by | May 27, 2020

Are you a frustrated, exhausted or grieving parent during this difficult time?

Most parents, whether their kids are on the autism spectrum or not, are feeling some levels of those three experiences during this Coronavirus outbreak.

Feeling the Weight of This Time

The demand for constant childcare, more hands-on parenting, and acting as the teacher pro tem has ratcheted up the difficulties and demands of the parenting experience for everyone with school-aged children! Everyone is feeling the weight of this time.

As we are presently in the midst of a historical pandemic of the coronavirus, the discomfort experienced from all the required changes is real. Most of us are “sheltering in place,” a term we never even heard before our respective state officials required that we stay in our homes except for essential trips for groceries, medical care, and the like.

The news is full of reports about people experiencing emotional suffering over losses related to our inability to gather in groups, attend school and church, celebrate milestone occasions – graduations, sports championships, weddings and funerals, etc. or see family and friends.

The sadness and pain that the general public is feeling due to the loss of these freedoms is a unique experience in their lives, and causes them to curse the coronavirus and what it has stolen from them! They say their lives have been forever changed.

Those of us with kids on the spectrum, wishing no ill toward anyone, have known this pain long before COVID-19 hit. The coronavirus has created conditions in the general public which mimic what happens in our lives every day.

Those of us with kids on the spectrum, wishing no ill toward anyone, have known this pain long before COVID-19 hit. The coronavirus has created conditions in the general public which mimic what happens in our lives every day.

I am taking the risk to share this knowing full well that I might sound like a self-pitying ingrate to some, especially if they don’t have their heart committed to raising a child on the spectrum like we do. Rather than a time of pitting one group against another, I ask that it be a time when we gain a deeper understanding of everyone – especially of those who experience these types of impacts every day and not just during the pandemic.

I want to touch on some of the deepest pains that we experience as a result of living with family members with ASD, and how the coronavirus has given other parents a taste of that experience.

An Abiding Sense of Isolation

Parents with kids on the spectrum are acutely familiar with what the Corona-haters complain about as the isolation being created. When you have a child on the autism spectrum, isolation abounds. Often, those around us don’t understand what we are experiencing, how hard we have been trying, or how we are feeling. Too often, those who don’t get what it’s like to feel isolated by the emotional fallout from living with an child with autism increase the chasm between us by telling us it’s our own fault!

Wham, we feel misunderstood, unappreciated and further isolated!

Many parents with children on the autism spectrum live with a deep and abiding sense of isolation that creeps into all facets of life, and feeds our feelings of being different, misunderstood and separated – a despair that many parents with kids on or off the spectrum are now experiencing during the COVID-19 pandemic.

Even during non-pandemic conditions, it’s typical for families with kids on the spectrum to attend a gathering for only a short time to make sure life remains manageable for our child….and that’s what happens when we don’t just decline the invitations out of hand. Often, out of cautiousness, fear, or worry we stand on the periphery of social events, keeping to ourselves, sheltering our ASD kiddos from too much sensory input and the potential for meltdown, or some other experience that will be painful for them.

The Loss of Milestone Celebrations

Since this pandemic is occurring in the late spring, graduations, final parties, weddings that have been in planning for months and months, birthday parties, Mother’s Day, and hosts of sporting event championships have been unable to be held. The personal heartbreak many people are experiencing with the loss of the milestone celebrations has been a big topic in the news media. Lots of people are experiencing huge disappointment and grief around not having the traditional types of events that draw families together, mark major accomplishments, celebrate milestones in their loved one’s lives, or recognize some special achievement.

For many of us who have children on the autism spectrum, we have been living with this heartbreak for years. Maybe these events were never even a consideration, or we may feel that they were stolen from our families by the day to day functional struggles our children experience! Either way, we have long since come to realize that our kids may never see many of those milestone accomplishments. The losses that are an anomaly in people’s lives while we fight the coronavirus, are a near constant in ours.

Not only do we struggle when our children miss out on those milestones, but every time someone else’s child hits one it triggers that awareness in us that we may never have that experience.

When my neighbor’s kids graduated from college, I was thrilled for them. But the joy for them wasn’t the only feeling I experienced. I also felt a loss. The feeling of joy was tainted by the grief over the idea that I may never celebrate a college graduation with my kids, and the worry about what would become of them in the future. How would they ever carve out an independent life for themselves? On top of that, I felt inadequate as a parent as questions about what my kids would be doing was too often brought up by well-meaning people who didn’t understand life on the spectrum.

We have long since come to realize that our kids may never see many of those milestone accomplishments. The losses that are an anomaly in people’s lives while we fight the coronavirus, are a near constant in ours.

When one of the neighborhood families celebrated the wedding of a child, my joy for them was immense. But it, too, was tempered with a personal sadness.

When someone’s kid passed the bar exam and became a lawyer on the first try, I experienced a sense of excitement for them but here, too, was a painful reminder. I experienced the disappointment as I moderated my dreams and desires with reality for my own children.

Sometimes, when I was particularly exhausted, I even fell into the “why me?” trap. How did I end up here, missing out on many of the joys that other families experience when I was putting in mountains of effort to help my children have a ‘normal life.’ I recognized the pain and the inequity of effort between my life and those without ASD members in their family. Of course, we love our children with ASD, and our lives require a mountain of effort to accomplish those milestones in life – both are true!

A Nearly Impossible Juggling Act

Parents whose children are now sheltering-in-place at home are experiencing rampant frustration, discouragement and difficulty keeping their kids engaged in school activities. I heard one woman say on the news “…They expect us to be teachers…but most of us have no background in teaching kids!”

I – like many other parents with kids on the spectrum – can relate to the idea that I am called upon to fill a role that I had no idea would be part of the job of raising my kids! But for us, it’s not just the role of teacher. We are constantly required to fill the role of teacher plus occupational therapist plus behavior counselor. The sense of not knowing what to do that the woman on the news expressed can be a constant companion when you have a child with ASD.

Parents whose children are now forced into e-learning from home are struggling to balance their career, their job, and other obligations with the heightened need for childcare and their kids academic support. It’s a new and big imposition to these parents!

This nearly impossible juggling act is one that every parent with a child on the spectrum knows intimately – the struggle to keep other responsibilities in balance? We get it!

A Call for Understanding

All this may sound like sour grapes if you haven’t lived through it personally. But it’s not what is meant here. It is a call for understanding.

I hope that you will take this communique the way it was intended – as affirmation of the intense challenges parents of every child experiences now during COVID-19 … and the hope that it brings more awareness by everyone to the struggles parents with kids with autism face on a daily basis.

When we gain a greater appreciation of what others are going through, it can help relieve some of the sense of isolation. Here, COVID-19 is leveling the playing field for the challenges that all parents are experiencing.

May one piece of good that comes from this pandemic be a greater understanding of each other! And may parents with kids on the autism spectrum feel an increase in empathy and understanding of their journey that extends well past the time of any shelter-in-place order.

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