It had been coming for six long months, since school closed due to the Coronavirus lockdown back in March. Back then, James was on a gradual build-up of his time in school, slowly getting back to where he had been before epilepsy, and the associated anxiety that came with it entered his world. You see, James has been out of school for a long time before; he missed the entire 2017-18 school year, being house-bound most of that time, and only started returning to school in Autumn 2018, starting with just one hour a week and slowly building up. As well as epilepsy and anxiety, James is Autistic and has learning difficulties, which made it particularly hard for him to cope when adolescent onset epilepsy arrived. He shut down, refused to leave the safe space of our home, built walls.
Over the 18-months since James was able to start conquering his anxiety and leaving the house, that one hour a week at school had grown to three days (for about 4½ hours a day). The week that lockdown started, we had planned to add another day to four days a week, but the virus put an end to that.
So, six months on, lockdown easing, school reopening, it was time to go back. Nervous days led up to the big day, a sleepless night the night before, and that was just me! As we prepared everything James needed, school clothes, shoes, bag, lunchbox, communications tools, home/school book, photo’s and symbols of school, the tension rose, the anxiety built. How would James respond? Would he be willing to go back into school, or would the old fears and uncertainties return, forcing him to be unable to return?
There has always been a routine to James going to school, as there is for many children and young people with additional needs. James enjoys time in his ‘den’ a small room just off the hall where all his favourite things are. From there he can see the bench in the hall and watch while his shoes, his school bag, his lunchbox etc. are gathered. As we placed these visual clues on the bench I glanced to see if he was watching. He was. Would he be filled with anxiety and refuse to move? I gathered up the photo’s we have of school so that he could see where we were going. Trying to supress my nerves I cast a sideways peek in James’ direction. Did he look worried? Was he fearful? Silent prayers were uttered, and I was encouraged to know that lots of people we know (and some we don’t) were praying and sending positive thoughts at the same time.
I needn’t have worried, as James saw all of these visual clues appearing, including a pot of PlayDoh (other brands are available, but they don’t have the right ‘smell’) that he likes to squeeze on the way to school, he was edging along the seat of his sofa towards the door of his den, and as I asked him to come he got straight up and came smiling through to the hall. Within moments we were ready, in the car, and on our way. But while James was smiling, vocalising from the back seat that he was “Appy!”, I was still supressing my own anxiety. What about when we get to school. What about the staff greeting him in full PPE? What about the temperature check? What about the simple fact that he is now in a different class with a different teacher and different pupils, something that had affected him before? Would this all knock him sideways and send him spiralling down into overwhelming anxiety again?
As we pulled up outside of school a member of staff that James had never seen before came out to greet and collect him, wearing full PPE. My heart sank. Surely this would be too much for James. My heart was racing, my mind filled with concern.
James, on the other hand, seemed to take these unusual factors in his stride, got out of the car and with his rucksack on his back and his Playdoh firmly being squeezed in his hand, headed off into school with his new Teaching Assistant. I tagged along behind for a few moments, was obviously not needed, so headed back to the car, thrilled but slightly stunned.
So, I thought to myself, who was the one with the anxiety issues? If James had been anxious, he certainly wasn’t showing it. It was me that had been the anxious one, me that had lost sleep, felt that knot in my stomach for days, had my mind racing through all of the unlikely scenarios of what would happen if James refused to go to school.
As parents we worry, it’s our job, and as parents of children and young people with additional needs we can sometimes worry even more, there can sometimes be more to worry about. But if we let that worry overwhelm us, it makes it so much harder for us, and sometimes for our child. If James had picked up on my anxiety, it would have made him more anxious. If he had felt my panic levels rising then his own might have risen and he might have once again employed his old coping mechanism of staying put.
Sometimes we can’t help but to worry, but when we feel that worry overwhelming us we can do something about it. We can talk to others and share our worries with them; that old adage that “a problem shared is a problem halved” can be all too true. Sometimes just talking through our worries with someone who is willing to listen, and maybe to add a light dusting of wisdom, can make all the difference.
I shared my worries with some friends; some, like me, have a faith and we prayed. It helped. I could still feel the tension inside, but I was able to hide it from James, to prevent it from affecting him, to protect him from catching my anxiety and becoming anxious himself.
In an hour or so I’ll be heading back to school to collect James. To find out what kind of day he’s had. Hopefully it’s been a positive first day back and so tomorrow, which as that wise sage Scarlett O’Hara from ‘Gone With The Wind’ correctly stated “…is another day”, will perhaps be a little easier, a little less stressful, and a little less anxious. We’ll take each day as it comes, but I’ll also learn to manage my anxiety better, to keep sharing how I’m feeling with others, and to be delighted by the amazing progress that James keeps making.
Maybe some of this resonates with you, if so I hope our story has been helpful. Like your story, our story continues day-by-day, and so I hope, and pray that you have a really great day tomorrow.
Content and images © Mark Arnold
Article first published by Firefly on 9th September 2020
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