That is according to my daughter Ava (aged 6).
My middle daughter Seren (aged 4) has Down’s syndrome. My youngest daughter Violet (aged 2) is typically chromosomed like Ava.
Ava knows Seren has Down’s syndrome. we talk about it in our house, openly and honestly. From the outset (from the day Seren was born) we made it our mission to make Down’s syndrome a topic of conversation, a part of our lives. When Ava asked why Seren had a special needs support worker coming in to our house, the reply was “because Seren has Down’s syndrome, and that means she learns a little differently to you and me so she needs a bit more help”. When the speech and language therapist came, the occupational therapist, the physiotherapist, the response was always the same. We wanted Ava to know that having Down’s syndrome was ok, but that her sister would need more support in certain areas of her learning.
Life has plodded on. Therapists have come and gone, hospital appointments have passed, Ava has been to /attended so many of them. When questioned, we always reply “Seren has Down’s syndrome, so she needs a little extra help / support etc”
We assumed that we were stating the obvious, that we were “normalising” having Down’s syndrome. That we were explaining everything clearly to our now 6 year old.
I have even answered the question “why does Seren have Down’s syndrome?”
To which I replied “because she was made differently in my tummy. We are all made differently in our mummy’s tummies. Some of us have blonde hair, some brown. some of us have blue eyes. Some of us come out with our hands or feet looking different” ((at this stage I should say that Matt, my husband and father of my daughters, was born with 2 fingers missing on his right hand)) “some of us can’t hear well, can’t see very well, and some of us need extra help learning, like Seren. We are all different!”
So imagine how I was completely floored the other day when I was having a conversation with a friend:
Me: Its a really inclusive place, Seren gets in as a disabled child and I get in free as her carer.
Before my friend could reply….
Ava: WHAT? Seren is NOT disabled! You lied!
I was shocked, and momentarily speechless. How had I failed to convey the whole “Down’s syndrome” thing with the way we talked in our family? How open we are? How much help Seren has?!
I composed myself and said “what do you mean baby?”
Ava: “Seren ISN’T DISABLED!”
She almost spat it at me, like it was some sort of insult. She was defending her sister. Defending her, like any protective sibling would against a bully in the playground. I was surprised, shocked, and sad…
Down’s syndrome is not a disability in our house. In one way I had succeeded; in another I had failed. I felt so sad for Ava at that moment.
“Darling, you know how Seren needs extra help sometimes? You know how she is having TA’s when she goes to big school? That is all because she has Down’s syndrome. Down’s syndrome is considered to be a “learning disability” which means that she is disabled in a different way to how you might think. When you see people in wheelchairs, it might be because their legs don’t work very well. When you see people who have guide dogs, it might be because their eyes don’t work very well. There are lots of things which make people have the word “disabled” applied to them. But really, they are just like you and me, they just need help with a bit of them that needs more help.”
It was a revalation to Ava.
Then we went to the place that allowed Seren in as a “disabled child” and me in as a carer… and there was a beautiful girl there in a very specialised wheelchair.
“Look at that girl mummy! Doesn’t she have a nice wheelchair?!” Then to the girl “Hello, I hope you are having fun!” The girl couldn’t talk, or see or smile (but I am certain she could hear as she has music playing on her wheelchair)… but her parents could. The parents clocked Seren, saw Ava, looked at me and nodded and smiled. We saw each other several times that day and each time we exchanged words, and shared pleasantries. We are in the know. One more lesson from Seren, one more lesson for her big sister, for me, for our futures.
How lucky are we?! How bloody luck are we?
A life without Seren would be devoid of a wider understanding and I am so grateful that she is teaching her sisters such amazing lessons so early. They are blessed to have her as a sibling.