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.
Awwh beautiful
Thank you x
Jane, Ethan is a credit to you and is beautiful. A very special little boy. His baby sister is gorgeous too and I’m sure just like her big brother she will be a credit to you too! That Dr should never have said anything of the sort. How awful of them! xx
Thank you Jo, there were quite a few complaints about the doctors manner!
An excellent letter!
I do wish that these ‘professional’ people would choose their words with more care and understanding.
You can see the love on Ethan’s face in that picture. Time will tell if your daughter is autistic but that won’t affect your love for your children. As you say, all you have to do is adjust your expectations.
My son is autistic and he is incredibly loving too. X
Thank you, I really don’t know how the comments could have been a help. Think before you speak springs to mind x
A beautiful post, one I’m sure was tough to write. E looks so lovingly at his sister it’s wonderful. No one knows what life will give us, but you are a strong and loving family. Hugs x
Thank you, definitely not a path we were expecting to be on but it definitely makes life interesting ;0)
Wow, what a thing to say. I guess the paediatrician thought he was being helpful or supportive.
Yes there is that! ;0)
How lovely that you just went for it. We were considering another child after Archie as our eldest is 13 so a big gap between them but now our situation has changed financially after I’ve had to really reduce my hours at work I really don’t think we could afford another. The decision at the moment is simply a financial one, not one regarding Autism xx
I always thought we couldn’t afford another baby, I don’t think anyone can on paper x
Oh gosh, I totally agree, better to regret the things you have done rather than the things you haven’t. But I think mums who regret having their children whatever they turn out like are in the minority thankfully. Ethan looks like a fab big brother and I’m sure he will always appreciate having a sibling, autism or not. You will always feel some guilt as a mother, and as a mother with one autistic and one NT girl I understand that particular type of guilt. Just keep sharing your feelings as I’m sure that helps x
Thanks Steph, I was handed guilt as soon as I left the hospital with Ethan. Some form of guilt is always there. Isn’t that what being a mum is all about lol x
This is such a wonderful post Jane, and such an important message. Your last line in particular, really powerful. I am so glad that you are where you want and need to be. Thanks so much for linking to #ThePrompt x
Thank you Sara, I do enjoy taking part in your linky x
A beautiful and thought-provoking post and I agree that the paediatrician should definitely have chosen his words more carefully. So glad that you felt able to go on and complete your family and I love that photo of Ethan looking down at Little E – so beautiful and so much love radiating out of the photo. I went through a similar process of grieving with Jessica – grieving the ‘healthy’ child I didn’t have although I love Jessica dearly – as you say, you don’t love your child any less, you just have to learn to readjust your expectations x
Beautiful post. I’m so glad you chose to live your life despite the risks – I’m not sure I can agree with the doctor’s advice at all! You have two utterly gorgeous children. I hope we can have a second one day 🙂 xx