My son Sam plays the piano. Actually, I would say he’s a legit pianist. He doesn’t like public attention so you would never know unless you heard him practicing in our home (which means all our coworkers have now heard him practice during Zoom calls – fortunately they seem to enjoy it). One of the benefits of being stuck at home all the time is the musical talent you can develop through hours of practice. (You’re welcome, Sam!) Usually, he plays difficult pieces with typical 3/4 or 4/4 time signatures. The time signatures on his t-shirt are what he calls “irregular,” which is what makes them difficult.
As parents raising special needs children, we are constantly playing those difficult pieces. Now that we are under quarantine, those pieces are now not only difficult, but they are irregular. The combination of difficult and irregular is a punch to the gut so to speak. We’ve dealt with many gut punches the last few months. If I listed them all, I’m sure you could check off many similar gut punches on your list as well.
But out of everything we’ve gone through, the hardest concept for me to wrap my head around is that John doesn’t have any idea why he’s stuck at home. Maybe being blissfully ignorant of the situation in the world is good. But his world revolves around waking up, taking a van to school, coming home, and doing the same thing Monday through Friday. On Saturday he goes to his community program and on Sunday he goes to church with us. I can’t imagine what he could possibly be thinking right now. Maybe he’s thinking something along the lines of . . . “MAN, my parents have gotten really lazy!” Or “I’m so tired of staring at these walls I think I’ll throw my body against them . . . a few hundred times today.”
ABC news recently published an article called “The other coronavirus ‘front line:’ at home with special needs children.” It details daily life for parents who are working as mom, dad, therapist, teacher, and health provider for their special needs children, all while trying to keep up their day job. The supports that were once in place for their children are gone, and all mental, emotional, and physical responsibilities fall entirely on their own shoulders. Many are also anxious about their children’s underlying health issues that make their children more at risk for developing serious side effects if exposed to the virus. It feels like “difficult” and “irregular” don’t even come close to describing the severity of the situation for many families.
I posted several months ago at the beginning of the government mandated quarantine in our state. I’m grateful I didn’t know then what we would have to go through, though I had a hunch that it would be hard (shocking, right?). Now we have nearly 3 months behind us! That is something to be proud of. Three months IS a long time when you’re running in a hamster wheel day in and day out. I’m also grateful I don’t know how much longer we will be doing this. Ignorance is bliss, yet “not knowing” can also be extremely frustrating at times. I’m immeasurably grateful for the aide who has been willing to come into our home, and our home only, during the last month to relieve some of our stress, anxiety, and fatigue from constantly caring for our son. And lastly, I’m grateful for John’s phenomenal teachers at his school for running programs with him via Zoom every day. They are the most dedicated people I know.
I want to voice my gratitude, because I realize to some it may sound like I’m just here complaining about my situation. I do recognize that there are doctors, nurses, janitors, grocery store clerks, etc. out in the community fighting this battle head on, while I’m able to stay home. Don’t get me wrong, I’m extremely grateful for everyone keeping us alive and well. I’m simply validating the situation of those others at home who feel they are swimming upstream and may feel forgotten about: you and your extraordinary kids. I know your arms are sore from the impossibly strong currents. Maybe you feel like you’re drowning and don’t know when you will be able to come up for air. I’m a firm believer that things get better eventually. They may not be the same as they were before, and they may not be what you hoped for, but you will make it to the other side.
These are, indeed, irregular and difficult times, but we will get through them and find our “typical difficult” again someday. That really is something to look forward to. My hat goes off to you as always.