Delightful help

This pandemic hasn’t been easy on most of us. I have some friends who haven’t been able to see an elderly parent due to quarantine restrictions at nursing homes. Others have simply been unable to travel the vast distances usually covered with relative ease because of a million different travel restrictions. Family members have been forced to adapt to seeing loved ones through glass windows or via a Zoom weblink.

But to physically touch that other person, to hug them? That’s still presently a bridge too far.

And so it has been for my family and Alex, our son. We have not physically been able to hug him since October–almost 6 months now. With his special school for autism closed, he would be staying at the group home 24 hours a day. No daily bus rides. No field trips to the store. Kids with autism needed to quarantine too.

The group home instituted a strict “no visitors allowed” policy when COVID-19 cases started to spike. The strategy was if they limited exactly who would enter the group home and be in contact with the residents, they could better protect them. Remember, Alex and most of his housemates have severe autism, and most of them cannot speak. So keeping them sequestered–and healthy–away from the outside world and its’ viruses seemed like the best of a limited number of options.

It hasn’t been easy.

Since the quarantine began about a year ago, we established a schedule of when we would “Zoom” with Alex. At a predetermined time three days a week, we would dial up the group home via Zoom and attempt a video meeting with Alex. The group home staff would shepherd him to the office computer where Alex would sit on a chair and look at us on the computer screen. The set routine of these calls would hopefully build up Alex’s comfort level with seeing us ‘virtually’ instead of in person. Not ideal, certainly. But safer.

Kat and I (and occasionally his big brother Drew) would begin the sessions with a few questions for Alex.

“How was your day, pal?”

“Did you get to play outside at all?”

“What did you have for dinner?”

The banality of these interrogatives don’t escape us. But we find ourselves asking them simply to attempt the slightest of connection with our son. We don’t expect him to answer. But we do hope he knows we care enough to ask about his world.

We would then launch into a brief monologue of our days, or the day’s events. Nothing big or deep or complicated, lest Alex look bored, get up and walk away from the camera. I also found that blowing bubbles for him would capture his attention best–just like it would if I was standing next to him. Even as a 13 year-old, Alex doesn’t ever seem to tire of someone blowing bubbles for him, even over a Zoom call.

But some days Alex wouldn’t come to the office computer. Some days when we called the group home to check on him, a staff member would say, “Alex is pretty upset tonight.” Which is code for saying Alex is hitting himself again. No Zoom call.

Remember that Alex wears a helmet most days–for most of his day. It’s to protect his head and face from his hard knuckles. Or an even harder wall, or table, or floor.

And then there are those days where Alex will come to the computer at the scheduled time. But instead of calmly sitting there watching us blow bubbles, he would simply moan or cry, and punctuate his inscrutable needs with a few punches to his face. All these years later, it’s still horrible to witness. Even more when it’s over a computer screen at a group home you cannot visit.

That’s what I mean by this not being easy.

Lately, however, things have been different. Because test positivity rates have come down, Alex’s school is back in session. Which means Alex gets to ride the 40 minutes to and from the school each weekday. He gets a change of scenery. He gets to interact with some of his favorite teachers and other staff members again.

One of them reached out this afternoon to Kat and I with a text:

“Hey! This is Christopher, teacher at PACTT…with an Alex update!”

It continued…

“This past week we have seen BOATLOADS of smiles. Alex has been vertical for the majority of the days. [Alex has been known to sleep at school.] He’s been participating in Morning Meeting, doing work stations and connecting with more staff. He’s also been able to wear his helmet less often. It’s always so nice to see his smile and hear his mischievous giggles! With him being more willing to work, we’ve been able to do more goal work, which is going well…”

Christopher then attached a few photos he snapped today as proof. Talk about delightful!

This note and these pictures didn’t make our day, they made our month. As parents separated from our child, it’s exactly what we wish to hear. We are so grateful of Christopher and everyone like him who, during the pandemic, just helps.