Dear paediatrician who diagnosed our son,
You advised me not to have anymore children. You said one autistic child would be enough, You were worried that I wouldn’t be able to cope with two children on the spectrum. Those were your words at my son’s six month check up.
What you didn’t know is that I had already spent the previous nine months telling myself that Ethan would be our only child. Wondering how I could possibly bring another child into the world that would need extra support. Another child that wouldn’t be able to talk to me.
My initial grief in our autism journey was for the child that I wasn’t going to have, the child that was going to complete our family. We wanted to be a four.
Grief is part of the autism journey, you grieve for the child you thought you would have. I grieved, I still do. There isn’t a day that passes when the emotion threatens to overspill. I have learnt that what I am grieving for is my expectations, expectations of a child I never knew, I child I had dreamed of.
Does it make me love my son any less, no. I have just got to learn to readjust my expectations.
Then the nagging started, the internal itch, a longing for the baby we have talked about before. Before diagnosis, before autism entered our world.
Every day I would ask google the question – My First Child Is Autistic, Should I Have Another Baby? Hoping that google could somehow look into the future and give me the answers I desperately craved.
There were no answers but lots of people asking the same question. All of them knowing the statistics. You will have a one in five chance of having another child on the spectrum.
I remember discovering one blog where the mum decided not to have anymore children as she didn’t want to live in fear of her child hurting a sibling. That post always stuck with me.
No matter how hard I tried, I couldn’t shake my fear. I didn’t want to live a life of regret, a life of what ifs.
I’m pleased to say I overcome my fears. It wasn’t easy and I spent nine months trying to ignore being pregnant so that I had no expectations. In a way autism tarnished my pregnancy. I wish that I could have still been oblivious to autism so that I could enjoy it, but it’s how I coped.
My biggest fear was how would Ethan respond. I think this picture says it all.
It’s not been easy. With autism you are constantly living on your nerves at the best of times, keeping your child safe. Ethan loved his little sister so much that we did have to keep her safe from his affections those first few months, and I have never known an exhausted like it in my life. We had to keep him busy, but that was better than have him not even acknowledge her existence.
Did the thought of him hurting her scare me? Of course it did but we got through that part of the journey.
Do I worry about my daughter having autism? Of course I do, I’m only human, but being an autistic family we have learnt to live in the moment. We will deal with that part of the journey if and when we have to.
I know that our life will not be easy and it will be full of ups and downs, but who’s isn’t!
So paediatrician please choose your words carefully for future families. Your words have so much power. I would rather be living our life as a family of four, than living a life with regret.