Accidentally updated this post thinking it was a draft from 2019, turns out it was published (and now republished!).
I’ve made no secret of the fact that when Audrey was born, the little face that popped out looked “different” and my brain flooded with negative thoughts.
Would people want to spend time with us? I assumed not. Would they whisper about us? Stare? Strangely I imagined her finding it hard to make friends. In fact, I thought everything would be hard for Audrey and for me.
In reality, she was a baby. A baby with a tube on her face, yes. A baby with an obvious “condition”, but she could still enjoy a coffee shop visit and baby group like any other baby. I had definitely underestimated humans in general, but I had an awesome NCT crew who were always there for me and were not phased in the slightest by Audrey having Down’s syndrome.
Inside I was still constantly surprised by how welcomed we were at baby groups, how it was never a big deal. I emailed ahead to book for baby massage, with a hard lump in my throat I would type “my daughter has Down’s syndrome and is on oxygen” and the reply was warm and… normal. The teacher confirmed my place and in fact I can remember her words along the lines of “this class will be perfect for her…” and once there, she was fawned over like any cute baby.
In the time that Audrey and I spent at music groups and play groups, she was always welcome and more often than not I would be tearful not because it’s all going wrong/people are being cruel, it was because I was emotional about the fact that she was “fitting in”. When I went to a choir for parents (where the grown ups sing pop songs and all sorts while the kids just play), Audrey would often stand at the front and mimic the teacher, where the other kids had absolutely no interest in what the grown ups were singing, Audrey wanted to be involved and she wanted to conduct the choir!
Of course, we’ve had some incidents, but it was less-so staring/nudging/whispering, more straight forward “My friend had one of those, couldn’t talk” or “What’s with the tube on her face?” – the bluntness was laughable. And of course she was (still is) small for her age, so you get a sympathetic head tilt or the question “Was she prem (premature)?” when discussing her age. She wasn’t premature (she was a few days late actually), but I found the confused look that followed that answer so uncomfortable, I would sometimes just say yes, she was premature!
Once she was off oxygen, sitting up and joining in, quite simply the staring, the whispering, the attention: it was all there but not in the way I had dreaded. Audrey was (is!) a superstar. People are drawn to her because she is cute, friendly and funny. She was often a very enthusiastic participant in music groups, clapping, singing, head shaking. She would say hello to anyone, asks people’s names, approach children/babies if they are crying to see if they are ok. I’m more surprised now if people don’t stare, if they’re not interested in her, because she is interesting!
Once she started school, we found a whole new audience. In reception, if we were early and waiting for the gate to open, I would see the nudges… older girls looking at her like a living doll, – they would look like walking heart eye emojis gazing at Audrey. People shouting “Hello Audrey!” when we are out and about and she regularly got presents/pictures/notes in her school bag from her friends at school. She would march into school with enthusiasm each day (often saying “Good morning” to the teachers at the gate) and she would bounce out each afternoon and throw her arms around me. She is exceeding those low expectations I had of her in those early days (based on an outdated view), everyday.
I know that our experience doesn’t cover everyone else’s – we are lucky in that her needs are not as complex as some, but we’ve had our moments. We’ve had to leave noisy parties and take time outs from events – sometimes I’ve felt uncomfortable in those situations, I’ve felt stared at. Just recently she wouldn’t hold my hand in town and I was gripping her by the wrist as she pulled away and got angry with me, I felt very much like the mother of a special needs child, gaining sympathetic eyes or even those stares that seem to say “I could never handle a child like that”. But those occasions are rare and the upside of the whole experience of having a child who is different is the immense joy we take in the little things she excels at and achieves.
I never knew that Audrey would have this quality that makes me want to show her off to as many people as possible. I never expected to feel like I was accompanying a celebrity to the park. Of course now, she is a (albeit low level) celeb as we’ve appeared on the CBeebies show, Our Family. Which has meant a few people have asked if she is in fact the Audrey off CBeebies and I love that typical kids will have watched her and enjoyed her episodes, without a thought given to her being “different” or weird. She’s just another kid featured in Our Family doing fun things.
Audrey is turning nine very soon and I having said she still gets attention, I have noticed that it has quietened down as she’s gotten older. She is less of a living doll now she’s a bit bigger. My thoughts have certainly started to turn to when she’s expected to be independent, but she won’t be.