This is the story of my journey into the unknown, into diagnosis and beyond.
There’s been questions and frustrations, anger and tears, sadness and loneliness. Learning the ropes and to be an advocate for my daughter as I went along felt frustrating and rewarding at the same time, like a second, accelerated, much harder version of growing up.
When my daughter came into the world, after a birth that bore no resemblance to my birth plan, medical staff whisked her away for all necessary checks. Very soon she was declared healthy and returned to the crook of my bruised arm. I remember feeling on top of the world. This feeling wasn’t about pain relief or happy hormones. The glowing feeling that my husband and I had created this amazing, little, pink and purple, beautiful human being. The memories of the way everyone opened the doors to let us pass en route to the recovery room and the warm smiles from strangers will stay with me forever.
A developmental disability means that someone we thought was typical is different. It means she will reach different milestones and face different challenges and victories along the way. Sometimes this is not apparent straight away (things changed for us when she was about 20 months old.) I had no awareness that this could be the case. Before then, we had joked that our baby would one day be President of the USA.Those days are long gone, and we have learnt to adjust our expectations and celebrate every step forward in her social and communication skills.
The initial impact of her diagnosis was hard. Autism was a big unknown for us, scary, unwanted, the word I couldn’t utter that was here to stay. This realisation sank in very slowly and painfully. Everyday life still mixes glorious moments (and it’s always the ordinary, like learning to put on her socks unaided or trying on a scooter for the first time) with the unexpected, unforgiving meltdowns, the rigidity around food and routines (things must be just so), the one-sided conversations (where every word is sinking in but I am unlikely to get a response from her) and non-reciprocated hugs.
In my darkest hours, I imagined my much-loved daughter as a delicate, fragile, yet broken vase, as I struggled to grasp the immensity of having autism in our lives forever. No super glue will fix her, there was no way to undo our history and start again. Waves of love would come and pick me up when I was feeling down.
We picked ourselves up and learnt to live in a different world. Key to this was the realisation that we are not alone. Understanding that there are others out there swimming against the tide saved my soul. There are people out there who understand, because they’ve been there. You are not alone.
Our private universe is raw, it’s authentic, exhausting, sometimes frustrating. Some may find our reality challenging or unpalatable, turn away in an attempt to keep their lives uncluttered and uncomplicated. But it’s authentic, it’s full of the kind of love that keeps everything together. And this love saved me, bringing redemption from a myriad challenges and disappointments in our lives. It is soulmates’ love and parents’ love for our unique, much cherished child. It is her unadultered, joyful, warm love for us, glowing like the sun every day. It is the love for our new friends who have become our growing family in autism.
Our family is all about loving each other the way we are. We are incredibly lucky to have our daughter in our lives, in all her uniqueness. I am grateful that time gave me the much needed perspective to grow. It helped me reconcile myself with life. It makes me strive to create a better version of myself every day.