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.
I can’t imagine your despair or how hard this all is for you and Mark, but you continue to amaze me by showing the world the good, the bad and the ugly in your beautifully blogs. We don’t actually know one another but please know that I read your blogs and cry and pray for you and your very strong family. I hope this is all over soon and life as we knew it would come back but until then please know my heart and prayers are with you!