I can hear my husband sighing in the background, those words often precede something that he doesn’t want to hear
But I have been thinking.
After seeing last night’s documentary “A World Without Down’s Syndrome?” I’ve seen many comments dismissing the views of parents of people with DS. Dismissing their views, my view that this world actually isn’t a bad world.
The link if you missed it is here –
For me this world is often a rollercoaster of emotions. I laugh harder than I thought possible, I cry often, I cheer and applaud the skills that she gains. I have friends who are incredible, I’m in a community full of love.
I blog about the up’s and down’s of our lives as a way of making sense of my own world, reassembling my thoughts.
I find it utterly disrespectful that my view and others like me, is so easily dismissed.
We’re criticised as being “too emotional” or “too close”. Even that it was easier for Sally because she could afford child care. There always seems to be some reason why someone belittles our views.
I’m an intelligent, highly educated woman. For many years I held a successful, responsible job. I’m not easily fooled and one thing that I do not do is tell lies. Lying is the worst thing for me. (Not singing my own praises honest.)
So why should my view be dismissed just because I’m a mum to a child with Down’s syndrome?
Should medics’ views be dismissed because they have direct experience with patients with Down’s syndrome? Because this is their chosen specialist area? Of course not.
The fact is that parents of children with Down’s syndrome are experts on Down’s syndrome. We have to be.
Yes I have these things called emotions. That’s an asset.
Yes they do get in the way occasionally when I’m trying to keep a calm and level head when someone is failing my child.
Yes I do berate services in my blog or on Facebook when they fail us. If you’re given a job you should do it, let my daughter down and I will tackle you about it.
It’s been pointed out to me that I gave up my job because of Evie.
Actually that’s not strictly true.
I was subject to a set of tragic circumstances a few years ago which meant that my family and I decided that the best solution was for me to remain at home for the time being.
We had no back up child care – my mum who I trusted implicitly had passed away. I was made redundant. My son then died. Other events had occurred and I needed to regroup, to survive and prioritise.
What had been the centre of my world at one point…my job, took on far less significance. It was a high pressure role and I decided that my life was hard enough. I found it difficult to trust people with my most precious child. I needed to look after my family, and no this didn’t mean just Evie. After her brother’s death I became pregnant quickly again.
That pregnancy was filled with fear.
I didn’t care if my child had a disability.
I wanted my child to live.
Sounds flippant doesn’t it? But it’s not.
For 9 months I prayed and hoped for this child to live.
That type of loss changes you. My priorities in life changed.
I began to spend more time looking into Down’s syndrome, how to help Evie and others. On this path I became active on social media, I found confidence to argue my causes.
It is very different to argue my client’s case in court than to argue my own.
That confidence has now come in abundance.
I will not be shot down for expressing my opinion. I am not just a mum.
I am a professional person. I am an expert in my child. I know more about SEN law that most people.
I have sat on both sides of this fence – the side where I know in all likelihood I would how aborted my child.
And my current side…
Those who challenge me and parents like me…can’t you understand that we are the voice of experience?
Do you remember as a teenager your mum telling you things?
And you would think “yeah whatever mum”
Days, weeks, months, even years later – your mum was proven to be right.
Remember how that felt? That realisation.
I’ve done this.
The amount of times I’ve said in my head “sorry Mum” when I realise that she wasn’t lecturing me or trying to stop me having fun. She was trying to help me to make the right choice by sharing her wisdom. She was trying to share her knowledge as she had been there before.
Do you see now?
I’m not trying to tell anyone what to do.
I’m imparting my knowledge and those like me.
I don’t have rose tinted specs on.
I know that there are real difficulties at times. And what’s more I don’t and never would deny them.
Regardless of the negatives I could not actively choose to abort my child because she had an extra chromosome. I couldn’t.
There…I’ve said it. Dismiss me as you will. Just remember what I’ve said about your mum and all of her advice. If your mum was anything like mine, think again.
When I balance what I gain from having Evie against what I “lose” – there is no competition. She wins every single time.