Jukie Returns to “Normalcy”

Today was Jukie‘s day to return to in-person school! Although his classmates have been back in person for weeks, we did not feel it was safe to send Jukie back until he had reached full immunity after his second vaccination shot. Thank you, scientists!

Normally Jukie takes the bus to school about 30 minutes away in the next town over. But today, Andy and I dropped him off together, wanting to see Jukie’s reactions to his old haunt, and wanting to see the reactions of the school staff that missed him so. Filming his initially skeptical reactions to the news that he was returning to school, we reveled in every element of Jukie’s triumphant return after more than an entire year without a single in-person experience with teachers, peers, or therapists. 

For the past year, school has existed only through small Zoom boxes on Jukie’s iPad. We often wonder what Jukie’s experience of the pandemic feels like to him and how he makes sense of the new ways in which the world operates. In the early days, masks on people’s faces greatly disturbed him. He didn’t understand why, overnight, everyone disappeared behind a face covering. 

Although not able to communicate verbally, Jukie is highly intuitive, having learned how to read facial expressions for context and connection. In fact, reading people is one way that Jukie negotiates the common misconception that people with autism are not social. The masking and social distancing that we have all been practicing, and Jukie’s inability to engage in school activities that give him some independence from his doting parents, have made it more difficult than ever for him to connect with others and to feel a sense of normalcy. Routine is important to people with autism, and he had suddenly lost all his school routines and with no way to process any of the confusing changes. 

And can you imagine Jukie wearing a mask? He won’t even wear a Band-Aid! A year into the pandemic, I think our record at keeping a mask on Jukie is about 90 seconds. For the last 13 months, Jukie’s only outings have been his daily walks with his dad. They walked for miles and miles every afternoon and usually into the evenings. If you live in Davis, there’s a good chance you’ve encountered them walking along the greenbelts or in the arboretum, leaving behind them a trail of branches Jukie pruned from the trees they pass. Since this time last year, our two family hikers have walked over a thousand miles. I bet they’ve covered every path in town. 

We waited until this morning to tell Jukie that today he would finally be able to return to school. I’m not sure he believed us until we pulled into the school parking lot. His eyes grew wide, and I think we all felt like maybe this was a dream — it had just been so long. While many of us spend time in long conversations with others, on social media, in Zoom rooms, or in our heads, Jukie lives in the center of his own awareness. Now that Jukie has returned to the teachers who know him so well, we look forward to him blossoming into a more comfortable version of himself.

Ninth Grade: 2.0 — A Restart to High School

Today was Truman‘s first day back at in-person school since this all began. He was given the choice to continue distance-learning at home or to return for the last few weeks of 9th grade. He enthusiastically chose to go back to school. In fact, he may never have felt more excitement for school than he did this morning. Andy and I both dropped him off so that we could witness this moment together. Truman didn’t even mind me taking his photo, saying that he knew we would always want to remember this day.

I know there are a lot of differing, complicated, and sometimes conflicted feelings about in-person versus distance learning. In our home, we are all fully vaccinated (except Truman, who is still too young). And as Truman has not had any in-person interaction with his peers in a over a year, we felt that consideration of his emotional well-being superseded the risk. So off he walked into school this morning, wearing pants about five inches longer than the last time he made this walk, and new shoes the size of his dad’s. He turned back for once last wave, and I recognized a hesitant smile behind two layers of mask. I kind of wish I could have followed him or peeked into the windows to catch a glimpse of how it’s all going.

I’m thinking of parents all across town and around the country who have bravely navigated these uncharted waters, trying to keep it all together and make the best decisions for their families. And I want to express my gratitude and appreciation for wonderful teachers for the endless extra hours they’ve invested in teaching our kids with enthusiasm and diligence, all while reinventing their profession. 

I wish all the students and parents a great first day back! May we extend one another compassion and patience as we figure it all out.

Seeing Jukie

This World Autism Awareness Day, let us celebrate and show solidarity with all people with autism. On this day, and on behalf of my son Jukie, I ask for more than just awareness. 

We must promote acceptance of individuals across the spectrum, which includes recognizing the profound end of the autism spectrum: people like my son are rarely seen. 

People with profound autism need a tremendous amount of care. This burden of love leaves many families feeling defeated and depleted. Especially during this ongoing pandemic, we need the support of advocates and champions to help us ensure that those living with autism have the resources and support they need to live life to the fullest.

My son is so much more than his label. He is not his autism. Autism doesn’t define him. He is a person who was born with a syndrome which causes autism. He’s more like you or I than he is different from us. Like anyone, my son seeks kindness, patience, and understanding. 

Please recognize my son’s value. Include him. Treat him with dignity. Though he cannot speak, speak to him. Though he may not look you in the eye, he sees you. My boy is a font of curiosity and of love. Look at him. See him.