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Moments: Caring for a Child With Autism During COVID-19

The familiar notes of the Edmark Reading Program emanate from the computer, as my son lets out his elusive giggle and stares me straight in the eye. He is on this program often so I’m not certain what instigated his mirth, but perhaps it’s because his mom is sitting next to him this time. He continues to laugh as I choose programs for him, hoping to elongate his homeschooling just a bit longer. All too soon the laughing ceases as he gets back to the more serious business of learning, and the moment is gone.

The cool thing is, I am confident there will be more of those moments to come.

Please don’t think this is a rousing endorsement of sheltering in place. I desperately wish my severely autistic seventeen-year-old was in his beloved school. We worked so hard to get him this placement, and I have tried so hard to get him there every single day that was possible. I am so grateful this is not his last year, and feel so badly for those of his classmates who will probably never go back. I know I will be a mess when he graduates, and am grateful I am spared that sadness this year.

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Justin has been absolutely amazing these last few weeks. When we first heard about the two week school quarantine, and I began to suspect it would last much longer, I wasn’t sure how this was going to go. In past years Justin would have been throwing his shoes at me every day and clamoring to go to the car. Our existence would have been a nightmare, as no explanation would have sufficed for a kid who could clearly see there was no snow outside, and no earthly reason why his mom couldn’t take him somewhere fun.

Just shy of two years ago Justin began terrible body movements that after nine months and seven different diagnoses was finally termed tic disorder, and I cannot imagine how that terrible almost-year of waiting and worrying would have played out could we not have left the house and met with the doctors. The timing for this, at least chez McCafferty, has been doable.

So far, he seems to have adjusted beautifully. There is a rhythm to our days now, which is important to him. We work together in the morning, he takes a technology break, and then we work together after lunch. It’s been smooth sailing thus far.

But what I didn’t anticipate would be those fleeting yet frequent moments of connection, the gift of eye contact, that elongated hug that is often all too short. One of the things the tic disorder seemed to deprive my boy of was the need for affection, once a staple in his life. I’ve missed that part of him as he was always my cuddly boy, which a lifetime ago had made his diagnosis seem impossible. I’m seeing some of that affectionate nature to return, and it makes these difficult times easier to bear.

It helps to get me through these days of worry and uncertainty, and for me the hardest part, not knowing when they’ll end.

He is a joy, and I love him.

And for now, that will have to be enough.

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