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Three days before the UK closed and the world changed beyond recognition, I had to take a train from London to Edinburgh with my six-year-old autistic son, daughter and two-year-old partner. We were traveling back to Scotland a week later than planned after a heartbreaking visit with my parents. My mother, who has metastatic breast cancer, ended up in intensive care just as the first coronavirus deaths in the UK were announced. She was still in the hospital when we left. Now, somehow, I needed to do the magical transformation from daughter to mother, get my head up and drive my kids home before the journey I had been routinely taking for 20 years came back, in the worst case scenario. , impossible or, in the best of cases, loaded with risk.
Two days earlier, my partner had tried to drive him home to give me a little more time with my mother, but at King’s Cross he collapsed and refused to board the train. Perhaps it is one of the great euphemisms of my life to say that my nerves were nervous.
Common questions are reproduced in a loop composed of anxiety. Would I get in the taxi or run away? (He was getting into the taxi.) Would he be able to cope with the sensory overload of the platforms at King’s Cross? (Yes.) Would there be time for coffee and a sandwich? (Of course not.) Now, suddenly, there was a new variety of questions. Would the train be too busy to keep our distance from other passengers? Would there be hand washing in the bathrooms and could we get our son to use it? And when we get home, could we get the handful of food he eats or would the Bird Eye Chicken Dippers have been emptied of Tesco?
Families of autistic children are a tough group. We have learned the high art of appearing calm as we work to make this noisy, bigoted, and unpredictable world livable for our children. We are like the people who paint the rooms before the Queen enters them, always one step ahead of our little rulers, trying to make their way through life smoother, better and happier. We are fighters.And it turns out that these skills are extremely useful in a global pandemic.
Self-isolation is, for many families, an exaggerated descriptor of everyday life. Physical distancing often comes with territory. My son used to have a habit of yelling, “SAY GOODBYE!” to any friend I met on the street until I had no choice but to carry out his orders. Do not misunderstand. He loves people, but he needs to know when they will come.
Her passions before the pandemic were school, a family swim session for people with special needs every Saturday, watching trains from a nearby McDonald’s parking lot with a McFlurry and chips, the playground, the local ice cream parlor, and going to visit “Ajji and Tata” (my parents) in London. None of this is possible now. And like many autistic people, my son struggles with change and chronology. So, according to neurotypical reasoning, life under lockdown would be especially difficult for him. So it’s a relief that the UK coronavirus rules have been relaxed for people with autism and learning disabilities, which means that families like ours can get out of our homes to exercise more. once a day and travel beyond our local area if necessary. And sometimes, for us, it is. My son can be a pro-physical estrangement as a general rule, p ero does not know how to stay two meters away from anyone. He has a deep sensory love for running his body and hands along railings and walls. The world is now a minefield.
However, he is dealing brilliantly. New routines have been established, quickly and organically. Every day he walks three circuits of our local park with his “babuga” (our son’s name for his other mother: his etymological root is “bicycle” … don’t ask). He doesn’t realize that people wear masks, perhaps because he struggles with facial recognition, perhaps because this is not the way his brain identifies humans. In the morning, we performed The tiger who came to have tea in his room (his sister is dad, I am the tiger, my son, of course, is EVERYONE). In the afternoon, jump up and down in our charcoal box, and we yell at it ineffectively. Say hello to Ajji and Tata on the phone: My mother is back home thanks to the everyday miracle of NHS social care that we are just beginning to recognize. There’s screen time, railroad construction, and endless alphabet recitation.
I wouldn’t exactly call any of that home schooling unless rolling a poly in a cherry tomato is in the curriculum, but its progress continues at its own idiosyncratic and fascinating pace. And witnessing the flourishing of my son’s relationship with his sister has been one of the happiest experiences of my life. In addition to being a great challenge, the running of the bulls is a tender lesson about what really matters not only for my son but for all young children. House. The family unit. A cup of popcorn on the couch across from Paddington 2. The little things. We never had big birthday parties or trips to the museum, so this collective simplification of our days is familiar to us. The surprising thing is not how much is lost, but how much is gained when restrictions are imposed on us.
“Will I be going back to school on … Monday? Tuesday?” This is what my son says every day, although it is not clear if he really asks or just likes the repetition of the days of the week. The point is, he’s fine with it. The school is closed. It would be impossible for him to go until it is open again. And that is that. Its autistic logic results in a Zen-like acceptance of our new reality that no mindfulness course could teach. Meanwhile, my neurotypical two-year-old son wonders why people wear masks. Fear of the world beyond our door is entering. The other day, she sighed in relief when we turned onto an empty street and said softly from her stroller, “It’s nice and quiet here.”
One of the paradoxes of confinement in a city is the horizons that have broadened overnight. Our street now has the required WhatsApp group full of daily gallantry and promises to host a street party once it’s all over. I told this group that my son is autistic and favors a particular brand of margherita pizza if anyone saw one. A neighbor, whom she probably still wouldn’t recognize if she saw her, quickly delivered two large pizzas to our doorstep and declined payment, saying her nephew was autistic and had a similarly restricted diet. The following week another “No. 18” pizza appeared. I don’t think any of them knew that our son was autistic before this crisis. They probably saw him run down our street barefoot or recite the numbers at the front door aloud in his phase when he had to “do my numbers” before heading home. Perhaps they drew their own conclusions. Now they know that they are responding not only with kindness but also with pizzas. And own revelations.
Meanwhile, my son continues to face the precariousness of life with courage, humor, and idiosyncrasy. In my certainly limited and neurotypical experience, blocking is more difficult and easier than I could have hoped for. Not that I have high expectations. Another skill gained from raising my son, and no one on this devastated planet has taught me more than this particular six-year-old boy, is to expect nothing more than to challenge every one of his assumptions. There may be no going back to how things were, but there is no way forward either. According to my son’s hermetic logic, now is the only place to be.
