I’m sure we’ll all remember these trying days for the rest
of our lives. For some of us, me
included, it has been wonderful in many ways.
Most importantly, I have my health and so does my husband and family. I also love having my girls home so much. I love that as a family we go for more walks
together, we cook more together, we play more games together. We sit leisurely around the kitchen table for
hours after dinner ends, chatting and laughing, in no hurry to leave. There are no parties to run to, no concerts,
no movies, no cruising around, no places to get to. We just sit and talk. And I’m very grateful for that.
But of course it’s been awful too. Remote learning is, at best, challenging and
at worst, a complete waste of time. I
have a high school senior who is missing out on the many traditional events
that define senior year, including prom and maybe even graduation. I have a college freshman whose first year
was abruptly cut short, and missed out on hundred- year old traditions at her
school. Both are struggling to finish the
academic year, yearning for this all to just be over with.
I’d venture to say, however, that as hard as this is for them,
it is so very much harder for Coleman.
For starters, at least my girls understand what is
happening. They understand concepts like
pandemic, social distancing, contagion, and vague time concepts like ‘someday’
or ‘soon.’ They know this is not
forever. They know they didn’t cause
this. They know they will eventually (God
willing!) return to school and we will see family and friends again. And they know how to keep themselves busy
until that time comes. Coleman has no
idea what any of those terms mean, has no idea if this is his fault, has no
idea why we can’t see family and friends, and has no idea why we can’t go to
the restaurant. And he certainly cannot keep himself busy during
this quarantine.
Coleman understands pretty much one thing: He started a new school and it was great and then it was over.
We’ve tried to explain to him what is happening. At first I used a social story but even that
was confusing. So then I said that
school was broken. I wanted it to be
clear that it wasn’t his fault. "Sometimes things break," I said. "SOMETIMES THINGS BREAK!" he angrily yelled back. And
since the girls were home too (which is very helpful) I said “See, their school
is broken too! It’s frustrating that
school is broken. It’s going to be
broken for a long time. And then it will
be fixed and we can go see your friends again.” He asks several times every day, and each time I say “I know you miss
your friends, but school is still broken.” “SCHOOL IS STILL BROKEN!” he angrily yells back.
Worse, I am unable to give him a specific time when school will be fixed, and he doesn't understand abstract times like 'soon" very well. In fact, time and its passing are concepts he struggles with. For example, we go to Florida each
year for Thanksgiving and the countdown to when we go begins
exactly the day we return. We will literally land at Logan, and on the walk to the parking garage he will ask “We can
go back to Florida tomorrow?” This begins his constant year-long questioning of when we will go again. We try to use phrases like 'not for a long time' or list for him things that have to happen first like 'First skiing, then soccer, then summer then
Halloween and then we can go to Florida', but he doesn’t really get it until it's written on a date in the calendar. Even then, at least once a week he still says “We’ll go to
Florida tomorrow?” Thus, you can imagine
how difficult it is to provide a timeline for the return to school, when in
fact a timeline does not yet exist.
“You’ll see your friends tomorrow?” he asks. “Well, no not yet.
School is still broken” I respond.
“You can see your friends after…” he says, waiting for me to
fill in what comes after. I wish I could
say “You’ll see your friends after the curve flattens" but obviously he would not understand any of
that. Or I wish I could say "You'll see your friends in three weeks" and mark it on the calendar for him to look toward but I can't give him that either. So, instead, I
say “Soon, buddy. When the school is
fixed, we can see your friends” but 'soon' is too abstract and only irritates him further. "I know this is frustrating” I say. “THIS IS FRUSTRATING!” he yells back.
His school is doing a zoom call once a day for an hour. At first he refused to do it. He has never been one for phone calls or face time so it wasn't unusual. And, in terms of actual learning, this is of course not really working, particularly for a child that needs so much assistance. But they do provide a nice social break and over the last several days, he is getting more used to the them. Last night he even said "You can see your friends on the computer tomorrow?" I was thrilled, and not only because I want him to remember these kids and teachers, and remember how much he loved being with them. I was thrilled because it gave him something to look forward. He is otherwise absolutely bored to tears.
We do try to fill his day. We have a schedule that we make every morning. It includes things like Do a Puzzle, Play with Blocks, Play with Legos, Play with Shapes (tanagrams). It’s a pretty short list of activities that he can do independently (but Thank God and Kara and Jen even for these!) so we also add things like Go for a Walk, Play Zingo, Paint a Picture, Go for a Scooter Ride, Read a Book, play Go Fish, Play Sorry… For all of these activities, he needs help. Like hand-over-hand type help. And because the damn rain won’t let up, and because Billy and I are both still working, and because we just can’t spend ten hours each day sitting beside him doing activities, he spends too much time on the computer and he’s miserable by 5pm. It’s exhausting for all of us.
We do try to fill his day. We have a schedule that we make every morning. It includes things like Do a Puzzle, Play with Blocks, Play with Legos, Play with Shapes (tanagrams). It’s a pretty short list of activities that he can do independently (but Thank God and Kara and Jen even for these!) so we also add things like Go for a Walk, Play Zingo, Paint a Picture, Go for a Scooter Ride, Read a Book, play Go Fish, Play Sorry… For all of these activities, he needs help. Like hand-over-hand type help. And because the damn rain won’t let up, and because Billy and I are both still working, and because we just can’t spend ten hours each day sitting beside him doing activities, he spends too much time on the computer and he’s miserable by 5pm. It’s exhausting for all of us.
Still, we recognize it could be worse. There are children
that, without the structure of school and therapists, are regressing back to
self-injurious behaviors. Kids that are
hitting their heads against the floor, kids that are smearing feces on the
walls, kids that are aggressing on their own families. And kids that have contracted this awful
illness and are in hospitals, families fighting in courts to be allowed to stay
with them. Yes, it could be so much worse.
So we will remain vigilant over the coming weeks trying to
entertain our guy, even if it means going for walks in the snow in April. Even it means starting Happy Hour a little
earlier than appropriate to suffer through another round of Go Fish. Even if I have to cheat and pre-arrange the
cards in Candy Land so that the game is not excruciatingly long. We will continue to answer questions about when he can
see his friends again every hour, every day, because eventually we will have an
answer. Eventually, we will be able to put
on the calendar in big letters for him to see “SCHOOL IS FIXED!” and then all will be right in his world again. Until then, stay well.
Thank you for once again taking the time to read stories about our
boy and our family.
Birds Nest Catching!
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