You were born on a warm Tuesday morning in early spring. A teeny little thing with not a lot of hair. A little round face and a cute button nose. You came into my arms during a planned caesarean. I felt in control. I was healing well, breastfeeding was going well, everything according to plan. Sonny, you were all I’d imagined you’d be and more.
As a tiny baby you were easy. You fitted seamlessly into our routine and I coped well juggling your needs alongside those of your big brother who was just 2 at the time. You were a content little thing, rarely cried, very settled and life was great.
With time you grew bigger and as you grew I started to notice little differences.
You were my baby, and because you were my youngest, I failed to see that you weren’t reaching milestones as quickly as your big brother had. I put it down to the fact your brother was very advanced for his age and that you would catch up in your own time. And you did Sonny. You were babyish and I didn’t see it as a problem.
You’d already reached 2 years old and were not saying many words apart from the odd ‘Mumma’ here and there. Instead you blew raspberries and babbled away in a language as unique as you. Still, you knew what you wanted, you made yourself heard and I learnt to recognise what you were trying to tell me.
By the time you were toddling, I had noticed my happy go lucky baby had gone. In his place was a tearful, fearful little thing who struggled to cope with seemingly simple situations. Taking you shopping was hard work and I didn’t understand why. There was no reason for your meltdowns that I could see. It wasn’t because there was something you wanted or somewhere you wanted to go but simply because you were there. Why did we have to walk the same way each day? Why did you insist on the same meals each breakfast, lunch and dinner? Why did you struggle to sit down and listen to a story at playgroup like all the other children could?
Crowded, noisy places seemed to trigger you the most. I go back to the only time I’ve ever taken you on the London underground, you were so beside yourself you vomited on the tube. There was no consoling you besides removing you from the situation and as your mother I felt utterly useless.
Why couldn’t I tell what was causing you such distress? There were many times I cried because I felt like I was failing you. I was frustrated with you. I frustrated with myself for not knowing what on earth was happening to my little boy. I so wanted to help you, I simply couldn’t find a way.
We couldn’t do anything, we couldn’t take you anywhere. Everything was a challenge. Suddenly you didn’t fit into our way of life so well. Something had to change. Maybe that was me. There is a moment in my memory that stands out from all the others, one I’ll never forget. It was the day that changed everything.
It was August 2015, we’d gone to Walton-on-the-Naze beach for the day with all the family to celebrate your baby Zachy’s birthday. We’d had an amazing morning on the beach, the sun was shining, you were enjoying all the fresh air, fun and freedom that the seaside brings. Later in the day we decided to all take a walk along the pier, play on the amusements and go on the fairground rides.
We quickly reached the point of no return. We were almost at the end of the pier, when you had the most almighty meltdown. You screamed and dropped to the floor, hands over ears, eyes clenched shut. You hit me and kicked me and you pulled my hair. You dug your nails into my skin and you scratched at my face. It hurt and I was frightened. You were terrified, an animal possessed. I wanted to hold you and cry. I wanted to shout and scream myself. I didn’t understand. I wanted you to be able to tell me what was wrong. I willed the ground to swallow us up but it didn’t. Passers by watched on, silently judging. There faces as horrified and confused as mine.
Knowing all I know now, I wondered how on earth we ever reached the end of that pier in the first place. I don’t remember too much about the walk back to our spot on the beach but it must have been calm. Quiet and reflective.
My little boy was different. I knew it then. I just needed to know why. I needed to know how I could help him.
For a while I found myself focusing on the things that made you different. The set rules and routines we had to follow. The manner in which we spoke to you for you to better understand us. The fussiness of meal times and having to present food to you in a set way, beige and plain. I found myself continually on edge, desperately trying to avoid the next impending meltdown. Life consisted of avoiding situations and isolating myself from friends and social gatherings.
The more I learnt about Autism, the more I understood the reasoning behind your behaviours. I made it my mission to not change you to fit our way of life, but to change our way of life to include you. We were welcomed with open arms into a community I didn’t know existed. I focused less on what you struggled with and more on what you loved. We have worked hard to get where we are. I soon noticed that we were more alike than different, you and me.
You see Sonny, Mummy wouldn’t tell you but I too suffer with anxiety. I get anxious to the point I feel physically ill. I prefer not to be swept up with a crowd and I’m not too fond of noise either. I wait patiently outside your classroom door, nervous to be around people I don’t know, hands fixed in my coat pocket or unnecessarily scrolling through my phone. I smile to myself. For about 10 minutes, I had been spinning the wheels on a mini toy motorbike in my pocket that I had taken from you before you went into school one morning. Only when I think about it do I realise I’d probably been doing it at some point each day with one object or another. Sonny I too hate food touching other foods on my plate and I hate other people mixing my food together. It makes me cross and I will eat it begrudgingly. I like to have the contents of my kitchen cupboards just so and I hate when items aren’t put back in the right place, it makes me twitchy. It’s okay to be different. Different is good.
‘Different not less.’
I may not have always fully understood you Sonny, but I do now…
And I will go to the end of the earth to make sure everybody understands you.
Until they see you the very same way I do.
My little Sonny Shine.