Today is a day dedicated to autism awareness/acceptance/knowledge. In the midst of all the powerful things happening around us and in our minds, we need inspiration. We need a good cry about something, well, good. So today, give yourself a break and take a moment to read an autism family’s story (more resources below).
In honour of all the autism parents, persons, siblings, friends, families out there I’ll share a reflection on my story with you today. I’ve compiled a list of traits, behaviours, thoughts that are getting me through this apocalyptic situation and they are all because of Christos.
Patience is so difficult at the best of times.
But growing up with as an autism sibling my patience was tested every moment. From getting up/staying up early hours, to not being able to watch what I wanted, eat or drink what I wanted, go anywhere, to not being allowed to play with him, share with him or laugh with him – I was a spare. I was only needed when he needed me and until then I had to sit back, give him what he wanted and perform on queue.
I had to, it wasn’t a choice. When I heard I was getting a baby brother I never thought it would be baby brother who didn’t want me. I was the first-born, the first-grandchild and I was used to a life of glam and attention. Christos came and put me in my place – he stripped me of my persona and told me to sit back and observe. After a few years of laying low he said his first words. He gave hugs and told us he loved us.
Patience is a glimpse into what could be, what is coming, the bigger picture, ambition, hope and dreams. For me it’s all of us coming out of this and going out to the beach or restaurants or seeing friends and, of course, flying home to see my family.
Life with autism is like preparing for all sorts of apocalypses (it’s a word!).
For example, the crisis of not having enough chicken to make 6 identical chicken nuggets, the chaos that ensues running out of salt and vinegar crisps while on holiday in a third world country, the turmoil of not finding a DVD, a jumper, a sock, or a toy.
So we had crates of gluten free pasta shipped from Italy, a freezer full of nuggets ready to fry, boxes of Omega-3 so he wouldn’t miss a dose, long life goats milk, identical spare undershirts/underwear and luggage full of crisps and lemons from Cyprus which travelled all the way to and around Sri Lanka.
Stockpiling wasn’t panic-buying for an autism family, it was a lesson learnt. My parents’ mission was to keep the peace and make life for him as accessible as possible. In recent years the stock is inspected and maintained by the man himself; he updates lists and makes sure nothing goes missing without good reason. Somehow this filtered into my own life which means I plan ahead and have back ups to my back ups which has helped this last month as I haven’t had to wrestle for basic necessities.
Quarantined with yourself: a love/hate relationship.
Being an autism sibling means a lot of loving your own company. When my baby brother decided to retreat into his own beautiful brain I was shut out. I saw him entertain himself for hours without the need for any interaction. So I followed suit. I played games I imagined us playing together on my own, I turned to reading, I started and gave up on so many diaries. As a teen I was forced to go through most of the big life changes on my own for different reasons and spending every free minute helping with his care. When I moved to the UK I was living alone and had made few/if any new friends during Uni; most of my undegrad was me hanging out with people online or spending time alone, watching stuff, creating, and learning. It got to a low point and so I picked up and started wearing a Dora mask, pretending to be a social butterfly but that didn’t last long either.
My brother’s fearlessness in being himself forced me to take a chance on being myself too. He was unapologetic in wanting everything to be in order, ruthless in keeping with his routine and so sure of himself whenever he made a decision on what he wanted. I’ve wanted that all my life. So I started hanging out with myself, learning, listening, noticing. I started making decisions that I didn’t dread following through on and settled into being me, unapologetically.
Even though I am lucky enough to share my quarantine with the perfect partner, I still need that confidence to follow through with it and to understand my reactions every day.
I don’t even know where to start with this. I repeat the same examples on this blog – repeating sounds until he fell asleep, putting on socks, reiterating daily schedules, what time it is, what volume it is, what we will eat, what we will wear. Life with Christos is scheduled down to the minute. In Disneyland, we did the same route and same rides every day, in Sri Lanka he ate the same food every lunch and dinner, in Cyprus he plays his game boy at the same time every day. Have a scroll through the blog and see if there is a single post that doesn’t talk about repetition in some way.
He taught me that the known is comfortable, it takes away the worry of uncertainty and it frees up the mind to focus. During this whole pandemic we are also planning a house move. Without my autism sibling training I would be a mess. Instead, it’s all planned with packing schedules, lists and a routine.
The list goes on but it’s not about quantity, it’s all about quality – another Perera lesson. I hope you have your coping mechanisms for this pandemic, but here’s a few resources if you are an autism family that needs a bit more care.
Another autism awareness day/month away from Christos, and a hard one at that. So please take a moment to read an autism story , or check in with your local group to see if there is anything you can support them with, send links to resources to autism families who may be struggling with daily schedules , wear blue, paint your nails blue, tell people why they’re blue.
Be kind, safe and take care of each other.