October is a month that heralds the long transition into the dark depths of autumn. We say goodbye to the golden Indian summer and embrace the colder weather and mornings shrouded in darkness. We look forward to Halloween and Bonfire Night; we embrace the sensory fun of your autumn favourite, kicking piles of crunchy leaves with our shoes.
But for me, this month always comes with the bittersweet taste of placing one more candle on your birthday cake. Because as you get older, I am truly grateful to see how far we’ve come, and yet I am reminded in a myriad ways how different our lives could have been.
Because you, my unordinary and beautiful girl, were diagnosed with Autism aged two and a half, we already have had a long road behind us.
I remember meeting you as a newborn, being cut away from me, angry, purple and confused, the happiest moment of my life.
I was there when you learnt to roll over, crawl and eventually walk, milestones that all arrived somewhat late – late enough to make the health visitor and GP raise an eyebrow or purse their lips whilst looking at us. The first of many times when someone would silently question our parenting skills – you eventually grow a tough skin.
I was there when you were turning two, and our concerns grew as we observed how you interacted with the world around you in such a different way. From researching on Google to being referred to a specialist there was only one step and a few weeks waiting that seemed eternal. Your kind speech and language therapist was the first to openly voice her concerns about Autism, and referred us to the CAMHS diagnosis service.
I was there when we received the long-anticipated diagnosis, the hottest day of that summer, bouncing you up and down on my knees to keep you happy, too busy to cry at that point – not knowing that it would take me many months to accept your diagnosis and to learn to support you as best I could.
I was there when we took you for the first time to a mainstream nursery… You were excited to be exploring all the toys and experienced no separation anxiety. As you grew up, you gradually became overwhelmed by the cacophony of noise created by those happy, boisterous pre-schoolers, and the garden became your refuge.
I was there when an Early Years inclusion specialist explained to us what PECS were: the visual cards that would eventually open the world of communication up to you. And so we started the painstakingly long process of creating opportunities and motivation for you to communicate, helping you move from eye pointing and a rudimentary grabbing our hand and pushing it towards the object that you wanted, to communicating through handing us the correct card. And many months or years later on, the sound of the Velcro on the back of the cards being pulled from the choice board would precede your latest request – for water, yogurt, or your beloved ‘hairbands and hairclips’ sensory box.
Everything we’ve done for you has been done with love, within our limitations – time, money, energy, knowledge. We wanted to be the best version of ourselves for you.
There have been true light bulb moments, like seeing the occupational therapist make you laugh with delight as she swang you in a blanket, then bounced you against the sofa. That was the day when I first understood the importance of meeting your sensory needs. That, put simply, the information filtered through your senses is all jumbled up and you need to ‘scratch that itch’ before you can play, function, learn. When you became a little older, you were able to self-regulate as needed, choosing when to bounce on your giant exercise ball for stimulation, when to draw the curtain around the garden door that creates your own tiny quiet area, when to run from one extreme of the house to another ten times in a row to get sensory input.
One day, when you were four, waiting to visit the specialist autism base which we hoped you joined the next year (the school we had to fight through a SENDIST tribunal to get a place in), teachers were getting a group of children from the mainstream section to queue outside, in readiness for their outing. The sight of these happy boys and girls, in their red uniforms, chattering away excitedly about the day ahead, made me miss so acutely for the first time in ages the ‘you’ that could have been. The bubbly, fearless, tender girl that I had imagined as our own version of Scout Finch. Even if I love with all my heart the girl that you are – here and now, you don’t need to change. And so at that point, overwhelmed, I rushed outside the building, sobbing my heart out, and that’s where the headteacher found me.
Your autism, whether people call it a disorder, a difference or a disability, is not the end of the world, the ‘big bird shitting all over my life’ moment that it felt like in the early days. It has thrown us into a journey of self-discovery and love, destination unknown. This is a biggie for someone who likes being in control, but along the way I have learnt to celebrate progress and let go of my expectations, no longer looking at the calendar, the instructions manual, the road signs I have learnt to forget about those who forgot about us and to concentrate on the people who matter most. I am still learning to gently expand the borders of your world and to help you learn and develop.
Every time you turn a year older, we put another candle on to the cake to celebrate the wonderful person that you are becoming, the apple of our eyes, the gift that you brought into our lives. And there will always be some cake, because you love cake, and some things never change. Happy birthday xxx.