Hand to Hold

Before the COVID-19 school closure, each morning we would drop our son Mark off to school, place his backpack on his back, and give his hand to a paraprofessional. Whenever it was my turn to drop him off, he would look over his shoulder and whisper a soft “bye”. I would drive away to work and begin my day knowing that he was in good hands.

Like many parents of children within special education, our days are now filled with Zoom meetings and Google classroom tasks, along with providing their services, or at least making the attempt. We had traversed music therapy and school sessions online with slightly more success this week and yesterday Mark had a physical therapy evaluation. As many parents of children with disabilities know, evaluations and testing are our least favorite as it reminds us of where we are, and how far away it is from where we’d like to be. And so there it was; an opportunity to see how difficult gross motor skills are for him, and to see just how far we need to go, in all ways.

It took two of us to help him do his exercises. Ike squatted behind a yoga ball as Mark teetered on its top unable to keep his balance, while I stabilized his arms and raised them together over his head at the prompting of his PT. He engaged for part of the session and then finally scampered off to go vocal stim in the corner of the dining room as he leafed through ABA vocabulary cards. I expressed my concerns about all of his motor challenges, was given exercises and advice to help him, and then exited the window of the virtual session. I felt my bottom lip quiver but didn’t have time to pause, so I sucked it up and went back to work, answering frantic emails from students and navigating my long to-do list.

Later in the evening, after everyone finished dinner I sat perched on the edge of my chair leaning in toward the laptop on the dining room table ready for another whack at a school assignment. I began staring at the crumbs falling beneath Mark who was seated to my left. He had resisted staying next to me for his virtual school sessions so we pulled in the adaptive chair from the kitchen that has a padded foam seat on top that allows him to feel more secure, and incidentally, has a hole in the front exposing the internal foam. So there we sat, as I tried to help him attend the meeting, all the while he was picking away at the seat watching delicate little foam flurries fall to the floor. He had a vacant look on his face as he did this, almost memorized by the activity. I was just happy that I wasn’t physically having to keep him seated.

Eventually, the fascination turned from observing to trying to consume, and then that became my new mission as we attempted to continue to listen to the AB pattern instruction on the computer. Jillian came over and said “Mom, does Mark have pica?” Sort of startled by her recognition of what it was to eat non-food items I just sighed and said, “yes”.

We made it through the lesson and the next task was to cut and paste small square blocks into place on a line to complete a pattern. As I hovered behind him, continually brushing the foam seat crumbs away from his hand as they desperately tried to reach his mouth, I kept telling him “helper hand” as I placed his left hand on the paper and then instructed him to “squeeze” the adaptive loop scissors in his right hand. And then I waited. After several seconds he would squeeze his little fist and the scissors would make a cut on the paper. Squeeze. Wait. Squeeze. Wait. This repeated until he cut all the way through the paper. We made it through that part and then on to the gluing, as I continually knocked foam seat crumbs out of his hand. Finally, he placed the last square completing all of the patterns. I yelled “great job, Mark!” and told him he could have a break before we attempted another lesson. As I sat there at the table, I slumped down and looked at the foam crumb mess at my feet and the composure of encouragement and patience was gone. The lip quiver that had started hours before gave way to sobs.

As completely overwhelming as schooling and simultaneous working is, the reason I lost it is because I am in it 24/7. And the “it” I’m referring to is the land of disability, special needs, specifically my son’s special needs. I am lost in a sea of phone alarms that remind me to take him potty because he hasn’t developed the ability to recognize the need to go and my day is governed by oven timers and verbal prompts; “one more minute with iPad” in order to avoid the meltdowns that occur when we don’t give such warnings. It’s also filled with multiple breath-holds when as we place food on his plate. Will he eat his chicken and newly loved favorite pickles? Or will it be another Larabar?

When I changed jobs three and a half years ago to switch from general academic advising to working in the disability support services office there was definitely an initial “what have I done?” moment when I realized that my working day would be filled with disability-related concerns and then I would arrive home to the same, but as time went on I realized that it was still easy to detach from my reality. The issues of others were easier to digest because they weren’t my own.

I could leave our strange bubble in the morning, drive 30 minutes to work which would allow me to transition from a tired mother of three trying to hold it all together to an employee who could show up for other people.

And now here I am. In it all the time. I am filling the shoes of Mark’s teacher, paraprofessionals, and multiple therapists all while trying to be his mother between phone calls and emails.

That’s why this is hard. We can’t get away. We are stuck facing the reality of our children’s deficits and challenges without the help of the team normally in place to help us approach our hurtles head-on.

I am standing in front of a giant wall with my son at my side, and everyone who normally supports us is confined to a small screen accessible by meeting link and passcode.

It’s lonely here. It’s isolating and not just because we are stuck in the house, it’s because we are on an island without our supportive village. They are cheering for us but not holding our hands. And right now Mark and I both need a hand to hold.

Peeling Back the Layers

Yesterday I spoke to a friend who works in healthcare. She confessed that she was not handling all of this well in comparison to others around her. She had to coach herself to get dressed every morning. Her depression and anxiety were worsening. I told her those were normal feelings in response to this very abnormal turn of events, and not everyone around her was enjoying the state-mandated social distancing and quarantine. She kept saying how thankful she was to at least have a job as if it was supposed to cover up her feelings in response to being on frontlines facing an invisible enemy.

On the surface, if you ask me how I’m doing, I’ll share that I miss my work clothes. Waking up and selecting from a series of yoga pants and a t-shirt has lost its charm. I love athleisure wear as much as the next person but I’m missing my dresses, real pants and clothes that make me feel like a person and not a human kleenex. I make way too many passes past my pantry, and my stretchy pants are just furthering enabling the incessant snacking.

Then I’d tell you how supervising and attempting to educate my children while working full time is laughable at best. We are not homeschooling. Teaching is a full-time occupation that requires preparation, forethought, and planning. I never intended to do any of this so no real teaching is occurring. We are traversing Google classroom links, Zoom meetings, and trying to understand how to step into the very big shoes of our children’s teachers. And if you’re like me, you’re feeling like a failure.

My son requires paraprofessional support in the classroom and we, like many other special education families, have been thrust into the roll of figuring out how to get our children to attend virtual classroom Zoom meetings. If you’re curious, it’s not going well. He also depends on very structured routines. This is also not going well despite my best efforts to make pretty visual schedules, phone alarms and commanding my family members to be aware of said schedules.

Just like all other parents of young children, we are interrupted a million times per day for drinks, snacks, meals, help in the bathroom, diaper changes, and kissing boo-boos.

Further beneath the layer of juggling work and childcare, I am also stopped several times per day because my daughter suffers from anxiety and panic attacks. Want to know what her number one trigger is? Illness. Can you imagine what a global pandemic does for a person terrified of getting sick, not to mention sick from a deadly illness? 

I’d then tell you that our life, which is normally chaotic, has been turned up an obnoxious notch to absolute insanity. Like my daughter, illness is something that I normally fear and is the source of my PTSD. Guess who already had latex gloves, N95, and surgical masks, along with cleaner that kills the coronavirus? This girl right here. I did grocery pickup way before it was the cool, less risky way to buy groceries. And guess who washed her hands constantly and used disinfectant spray on my phone, doorknobs, and remotes on a fairly regular basis? Yup. I’ve been preparing for a pandemic since my son Mark was born. Why? Because illness for us means weeks of misery and unknown. It means regression. Food and drink refusal, loss of words and incessant irritability and crying. And it could mean the development of seizures. I am always on guard and now the rest of the world is too.

And further beneath that layer, I’m shaken. Each time I read a news story about a vivid, excruciating experience with COVID-19, I am pushed to this place where I begin to imagine what it could be like if I was one of the unlucky ones; one of the ones to die alone in a hospital with my loved ones listening to my labored breathing over the phone.

I think of my parents and in my in-laws who are in the age bracket of those at risk. Both my mother and father-in-law are cancer survivors with underlying health conditions. My dad is an essential employee. My grandmother is 90 and living in an assisted living facility. The first death was reported in our county today, a person in their 20s with disabilities. Each and every stat and report of cases and deaths further stirs my worry.

And then I scroll past the story of Charlotte, the little girl who inspired Charlotte’s Web, the CBD product used to treat epilepsy. She had SCN1A, a sister gene to Mark’s genetic mutation, SCN2A. Mark falls into the underlying medical condition category, and one of the people who may not fare well in the face of this virus. That is the dark place plunged beneath the layers of overwhelm and irritation. The place which reawakens my fears and leaves me wide open and vulnerable, just like my daughter who keeps telling me the house feels different and she can’t quite explain it.

I am not doing well but it’s because I am having a normal reaction to an unprecedented global pandemic, on top of the layers that were there before the coronavirus descended.

So no, my healthcare friend, you are not bad at this. You are human, experiencing real feelings that shouldn’t be diminished because you at least get to collect a paycheck. There is no place for comparative suffering amidst this pandemic. I’d venture to say we are all experiencing waves of panic, grief, uncertainty, and unease. No one is guaranteed their job, food, toilet paper, their comfort or their loved ones. And feeling those feelings is natural and thankfully bonds us together in this chaos. We may be socially distancing but we can experience closeness knowing we are not alone.