At first, I blamed myself.
There is a period that I find quite hard to return to, in terms of our neurodivergence journey, but I'm going to, because there were lots of learnings that might help others.
In December 2021, I was staying with my parents for a month, while we were between houses. We’d sold up in London and bought a place in Somerset that would need lots of work done before we could move in.
When I think back to this time, I see darkness. It’s like the house and everyone in it was shrouded in a black fog. I didn’t want to be leaving London; the kids were being homeschooled during the transition; there was lots of uncertainty.
But the biggest uncertainty - or, the one that mattered most - was my son’s neurodivergence. There had been hints, from his previous teacher, about autism and I had spotted it myself. Now, I was left wondering what to do next.
Something that I’ve since been asked by many medical and healthcare professionals is: what was the birth like? And I don’t like having to answer this, because the birth was really difficult. I wasn’t looked after. He wasn’t looked after.
I so enjoyed my first and third births and for that reason, I’ve always felt guilty admitting that the second one was hard. For a long time, I pretended it was fine, thinking that if I kept saying it, I’d convince myself that it had been. But it wasn’t.
The midwife was deeply unkind and - actually - negligent. The student midwife she sent in didn’t know that my baby was back-to-back. He was stuck in the birth canal. Another midwife told me I had a low pain threshold.
I was so heavily drugged up by the anaesthetist that when my baby eventually came out - forceps, rather than the c-section I’d been prepped for - I threw up everywhere and could barely hold him, as I was shaking so much.
With my first baby, she’d latched on to suckle as soon as she was plumped on my chest. I felt like all those visualisations I’d done around birth and breastfeeding had really worked. But with my second baby, it was so painful. My nipples bled.
So, I talk about my son’s journey earth-side when I’m asked by those professionals but try to rush through the birth bit and the tricky start to breastfeeding, so that I can get to the bit about how good it became, down the line.
He wanted to sleep on my chest and so I did a lot of co-sleeping. Breastfeeding got so much easier and continued for 15 months. And he was truly the most charming and calm baby. He was happy and sweet and delightful.
As he moved into the toddler years, he almost never tantrummed. It happened maybe five times, in total (when he was woken prematurely from a nap). He found it hard to settle to sleep on his own, at night, so we continued to co-sleep.
He grew into a calm, creative, kind boy and started school. That’s when things became difficult. That’s when his teacher said he was more anxious than they’d expect school-starters to be. That’s when I started to worry about him.
That December, at my parents’, having pulled him out of school less than a term after he’d begun, I wondered if his birth had contributed to his difficulties. I became obsessed with this idea. I contacted the hospital and asked for my notes.
They didn’t reveal anything of interest, but I was full of concern and fear and not-knowing and I wanted someone or something to blame. I’d done the best job I could, as a mother, and still my son was finding parts of life hard.
I felt really sad. And angry, with the hospital.
My son eventually started a new school in Somerset and for a time, things were quite good. I still thought he might be on the autism spectrum but when I asked the teachers they said they didn’t think so. I let it go.
I didn’t let it go. I researched in the background and when, again, school became too difficult, I stopped sending him in. I was not going to watch my son have daily panic attacks, linked to school, and make him go in.
Eventually, we paid for a private autism assessment, had it confirmed and there was a new starting place. Now that I knew he was autistic, I’d do everything I could to support him in the ways he needed.
I also discovered that autism is most likely to be genetic, which came as a relief. Perhaps it wasn’t from a difficult birth; it was always going to be this way. Now, I didn’t feel guilty or responsible for what was happening. It just was.
We are not at the end of our journey with the challenging side of raising a neurodivergent child. The challenge, of course, being school, society and the world - not our child; never our child. But we are hopeful.
When we can see that something needs changing, we change it. We work hard to find new options; make new plans. We are open-minded and ready to help him re-integrate into school if/when he feels able but we also know it might not work.
There is still a woeful lack of funding and provision for autistic children like mine, for whom state school is often overwhelming and just doesn’t feel safe. There are too many people, too many transitions, too much unpredictability.
I know what he needs; it doesn’t seem to exist. But I am with him, on this journey. The guilt has gone. The questioning has gone. The darkness has lifted. We are warm and connected; there is light flooding in. He is happy, at home, with us.
Annie x
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