My son is a high school senior at a Special Services District School. He experiences autism, epilepsy and just turned 21, but he misses school. Yep, the actual building and all of the people in it. The routine, the sights and voices and even the smells.
It is rare indeed when he is able to express his true feelings with anyone, including me, however yesterday was a gift. Yesterday in New Jersey, Governor Murphy announced the inevitable in his daily press conference. School will remain closed for the rest of the year. As parents, we knew this was coming and understand. For a person with developmental challenges, online school is hit or miss.
A Change in Routine
At first, my son was thrilled with the idea that Mom was not waking him up early every day with loud music, jostling him out of bed to start the day, to dress, eat, and prepare to greet the bus with his nurse Joann. At first, he luxuriated at home in pajamas, munched on daily pancakes or french toast, and thrived in hours of unstructured time as we found our footing. To him it was as if a newly-patchworked routine seemed to drop out of the sky - just for him. He kept hearing the words, 'sick' and 'stay home' and 'safe'. We knew that so much sadness was going on outside our doors with so many, but our job was to flatten the curve.
Now, after two months, there are some days when he wants no part of classwork, and he is only able to hold hands, watching "High School Musical" while bouncing on his therapy ball. We find comfort in how many things we can still do. We facetime with his paraprofessional friend Michele so she can remind him that, yes, he CAN do his math worksheet, even though she is not there.
We have loved ones who have been sick, and we have all tried to gather virtually. My son just wants to go to their houses. He constantly repeats, "I can't go outside."
There are days of Occupational Therapy with Mr. Bret, Behavioral Therapy with Miss Erin, and even Speech Therapy with Miss Joni, but it's just not the same when you are not big on eye contact in the first place. On the best days, we walk around the block listening to music, draw movie logos, complete writing and math worksheets, and practice job readiness skills like setting the table or putting out recycling.
A Moving Car Ride
He uses hand sanitizer and washes hands with help. We are reading social stories on learning how to wear a mask in public, and how not to touch others. These lessons are the most difficult of all, so we do not go out of the car in public yet. Except yesterday.
After we finished our daily school assignments given to us by his teacher Miss Donna, we usually celebrate with a small treat, a short walk or a ride in the car. We completed our checklist, and I asked the daily question, "What would you like to do?"
"Go to school," he shot back, just long enough to lean his water bottle away from his lips.
I was stunned. "Really?" Usually, he asks for Wendy's drive-thru or a chance to see his friend Timmy.
"Yes. Let's GO."
I drove half thinking it was possible, and half believing that he had some mission to complete. He's a serious VHS and DVD movie buff, and I envisioned that we had somehow fallen into a weird mash-up of "Ferris Bueller's Day Off" and "Groundhog Day". Autism parents do a lot of detective work to determine what's going on in our children's heads. We become so adept at learning visual cues 'sign language' that our skills become instinctive. And they are usually spot on!
When we arrived, his joyful squeals turned to jumps and leaps to the front door. He peered into the glass doors, expecting to see the familiar faces who welcomed him every day for the past four years. All he greeted was his own reflection.
That's when he marched over to the security button, and rang it with a clever smile. Yup, it seemed to say, they are playing a game with me. I know that they are hiding to surprise me.
Then we waited. I was crying by then. He looked at me and said, ""Don't cry." That made me tear up even more. "Don't be sad."
Then he gingerly touched the window and walked away. My grown up young man had taught himself a lesson. And his mother, too.
We're All in This Together
People with different abilities may not express themselves like everyone else, but they also need to know what's going on. He is a very visual person, and he did not understand that school was not going on without him. He thought he was the one who could not go there anymore. By seeing the school for himself, my son was able to determine that his mourning process had an entirely different perspective than he previously imagined.
Later at home, I showed him a list of emotion words and asked him to pick one that he was feeling. "Lonely," he blurted out, clearly pointing at the word. "I can't go outside right now."
I suggested to his teacher Miss Donna today that the administration could even make a video to show the kids what's going on at their school now. Seeing those hallways and classrooms again could be very therapeutic. Our little drive-by helped us so much to come to terms with change.
For seniors, the current experiences are doubly difficult. This year, my son leaves the only friends and staff family that he has known. Transitions to adult life and all of the preparations have been daunting for our family, but thankfully this school-at-home life has brought us closer together as a family. We are all weathering the storm, and finding those rainbows wherever they may lead. We will fashion our own kind of graduation-into-adulthood, perhaps in the backyard? On Zoom?
After all, he can make the graduation rules now.
We have had a taste of life "after the bus stops coming", and it has been a comfort to adjust slowly and knowing that we are all in this together. #weloveourteachers #weloveourparas #weloveournurses #weloveourtherapists #weloveourbusdrivers #weloveourschools #classof2020