What the xxxx is normal?(!)

by Kerry Jordan-Daus @KerryJordanDaus

Thank you Francesca Martinez for your beautiful book, What the xxxx is normal? (!). It’s been on my reading list for some time, but in the COVID-19 lockdown context, well I was looking for something to read, and there it was. And it was just what I needed to read. Because this certainly is not xxxxxxx normal! But it’s important that I make it normal because what is normal?

I am now thinking about normal in the context of Autism Awareness Day, 2nd April 2020 and what this means, really means on the ground, today, for us. It’s about trying to create a normal each day, every day, long after this current lockdown is over. But today, it’s, well, one day at a time. 

Everyone will have their own challenges during this time. For me it is creating a space where my neurological diverse daughter is supported. She needs constant supervision, just someone to talk to, to sit with, to be with from the moment she gets up. Normally, she is quite independent because of the routines and structures we have built for her. But now is not xxxxxxx normal. Sometimes, no often, I am not enough. She wants her college friends, her work colleagues, her support workers, her counselling, her freedom, her independence. 

Our weekly farm shop visit today, we talked about the lambs in the fields, the number of joggers we saw and how beautiful the countryside looked in the April sunshine. We stocked up at with potatoes, milk, bread, wearing our rubber gloves, talking about social distancing and giving people their space. Yes, that personal bubble space has always been hard for our daughter to understand. Now it’s so important. But I’m not sure she really understands, really!

Each day we walk our dog, we are averaging 10,000 steps a day. We are able to walk in the fields adjacent to our house. We take a drink and a snack and sit for a few minutes. We colour, we watch favourite musicals, we bake, we do a bit of college work, we send photographs to our family and friends. This is our new normal.

It has taken us seventeen years to secure the autism diagnosis for our daughter, don’t remind me that autism is hugely undiagnosed in girls. We know. It’s a label, but it is important for us and more importantly for her, just knowing that she’s normal and different. Last week we got the “official letter” about something we have known for a long time. It changes nothing, it changes everything. A free bus pass, maybe an EHCP, maybe peace of mind? My lived experience has been working with professionals who, well, have and continue to fail to appreciate the enormity of the day to day struggle when you’re not xxxxxxx normal. But what the xxxx is normal?(!) 

My heart goes out to all those parents and carers with children and young people with a range of disabilities, managing, surviving during this period when their normality has been shattered.

This is not a complaint, but a call out to everyone to spare us and the thousands of families a thought or two. Social distancing, well,  isolation has a different meaning. We have a support network. But the hidden dimension of our beautiful daughter’s needs cannot be understood unless you live with this everyday. It’s our normal.

So, my #CoronavirusDiary is the story of balancing, juggling, creating a routine, being flexible, being patient and remembering to invest in myself. I cannot pour from an empty glass. So, virtual yoga, Pilates, #WhatsApp chats, Twitter, family zoom chats, the greenhouse project, cooking and garden projects. A new normal. 

And of course, there’s the day job, working full time by creating a new shift pattern with my partner so we can both “still” do our jobs. What the xxxx is normal? (!) I smiled when I received the list of staff development “opportunities” by email this morning. One particularly struck a chord, the wrong chord. How to manage performativity remotely. Funny, that was not on my xxxxxxx list of to do! I have never been busier trying to create normal.