One of the questions I get asked the most frequently is, “how did you grieve and come to an acceptance that your child wasn’t neurotypical?”, or words to that effect. People seem to want to know the answer on how to just “be fine”, and they want to know how to get there quickly. All I can do is tell you my story on how I’m the happiest mum to my autistic son and wouldn’t change him for the world.
I knew very early on that we were in for a rollercoaster ride with kiddo. At 10 months old I was telling professionals that he wasn’t fitting into developmental tick boxes. I was ignored, put down even, and we stayed in that pattern for a good 18 months. I watched my son grow and follow a completely different direction to the other children I was child minding at the time. I realised one day when I was updating assessments that if he had been someone elses child, I would be recommending a referral into the healthcare service. I carried a ball of anxiety around with me for some time, months I think. I refused to have the conversation with myself, until one day I decided it was time to look up his symptoms. I already knew the answer, but when you see something in writing you can’t deny it as much as the thoughts in your head.
I dont know what I was frightened of. I didn’t get it. He was still my beautiful son, why was I so fearful? The answer was very simple. I had no idea what I was doing. I wasn’t frightened of my son’s different path of development, I was frightened of my own inability to be the mum I had always wanted and thought I would be.
I read a lot of blogs, many of them horrendously depressing. Words about people grieving the loss of their child etc. Having known friends who had actually lost their children I couldn’t understand this. Their child wasn’t dead, they just weren’t perhaps what they had expected. So in their heads they had planned the child they wanted and it hadn’t turned out that way.
My thoughts turned back to me. What had I planned for my child? University? Sports teams? A highly paid job? What if he hadn’t wanted any of that? What if he had simply travelled the world and made a living busking on the streets? Would I be any less proud of him? No. What was the only thing I wanted for my son? Happiness.
So I asked myself, was my son happy? The answer was no. At the age of 2 he was not. So I stopped reading blogs and I started reading books. I needed to learn how to parent him in a completely different way. A way he could understand and a way that made him feel safe. He was my son, his happiness was my responsibility. If all I truly wanted was a smile on his face then what was standing in my way? What was I actually sad about?
The day I had to give up my business to become a full time carer showed me what my problem actually was. I wasn’t grieving for the child I hadn’t had, I was grieving for the life I thought I would have. It was nothing to do with kiddo. It was my own selfish wants and needs. “I want a business”, “I want to go to the school play and see my son on stage”, “I want to have big family parties at home that kiddo enjoys”. Did kiddo want any of this? No. I was no better than a parent who pushes a child to achieve their own failed dreams and doesnt ask their child what they actually want.
And boy did I give myself a bollocking. So I asked myself, what did I want for myself that was actually reasonable? Because I have needs, of course I do! When it really came down to it, I just wanted friends. I had lost so many who didn’t understand my parenting (neither did I at one point) and I was lonely. So I got off my backside and I found other parent carers. I’ve never looked back. Sure I get upset when perhaps I have to let go of something I enjoy (I’ve recently had to give up the gym), but life is fluid and not rigid. What isn’t appropriate right now may well return in the future. The only thing that isn’t an option is my boy’s happiness. That is the only thing I aim to keep constant. Because if he is happy, then so am I.
Thanks for reading,