She made me cry.
Well, tears pricked the edges of my eyes, which is about the closest I get to crying in public.
I was sat in an Italian restaurant with my husband, our three children and another family of five that we’re friends with.
The kids were colouring in, giggling and probably being a bit too loud. It didn’t matter, though, as the restaurant is big and the staff love children.
We ordered pizzas for everyone and wine for me and the other mum, and she and I got into some deep conversations about family, acceptance (or not) and difference.
We spoke about neurodivergence and I told her about our situation, with our son currently not being able to attend school.
She listened kindly and compassionately and said: everyone gets the child they’re supposed to get. You were supposed to have your son.
I was surprised by this comment. I wasn’t ready for it. I stayed quiet.
She said: look at what you’re doing for him. Look at the lengths you’re going to. That’s why he was supposed to have you, as a mother.
I don’t cry much at all. And only very rarely in public. But she got me with that comment. Something climbed up into my throat and the tears welled up.
She had reached deep into my mothering soul and put her warm hands around it.
Her comment was based in spirituality and the idea that souls are ‘meant’ to connect. While I’m open to this idea, it’s not something I’ve ever thought or spoken about.
It gave me a new perspective on our situation. And it gave me new energy for the battles we are fighting to get our son the support he needs.
But mostly, it was just so kind.
It was her way of saying that I was doing a good job. But it held so much more weight than the actual words “you’re doing a good job”. It was deeply soulful.
When you’re supporting and advocating for a neurodivergent child, it’s really easy for people to say the wrong thing, however well-meant it may be.
Basically, any advice from someone not also ‘in it’ is of no interest.
Here are the types of things people have said that have annoyed me:
“Have you tried…” - almost certainly ‘yes’. We think about this every single day. You might think about it once or twice, for five minutes, but this is our life.
“What he needs is…” - something no one knows right now, and so you definitely don’t.
“Do you wish you’d…” - well, we didn’t.
“Was it a traumatic birth?” - also, anything that looks for a reason. We don’t need one.
“Everyone seems to be autistic these days” - they’re definitely not.
“There’s nothing wrong with him” - we never said there is. But he is autistic.
“If he doesn’t go to school, he’s going to get really behind” - there is no ‘behind’ when you’re not at school.
“I know an autistic kid, he’s really struggling...” - if you’re asking for my help/support - that’s fine. If you’re just telling me a negative story, it helps no one.
Also, endless streams of links, plays, books. Again, from someone ‘in it’ - really useful. From someone who isn’t: it’s almost always more offensive than useful.
But there are also people who are full of kindness, compassion, love. Who ask questions that feel caring rather than intrusive. And who say the sweetest things.
Most of my closest people come under this second bracket.
And if they trip up, I try to tell them. I’ve explained that I mostly don’t want links to articles. I find my own. Now, they usually ask before sending something.
This is a very sensitive space to be in. Motherhood is sensitive; mothering a child who is neurodivergent and struggling is next level.
I write about it because I have no shame. I have curiosity, determination, hope, passion, interest and because I think it’s important to air the challenges.
If we don’t speak about this experience of mothering a child who doesn’t fit into mainstream systems, then people don’t know. And if no one knows, nothing changes.
We need change. We need better support. We need more educational settings and options for kids that fit between mainstream and specialist settings.
And we definitely need more - and better - specialist settings.
What we don’t need is shame, stigma, judgment or criticism. Slip into that and I’m gone. You’ve lost me. That is not me, my child or our family.
If you want to support the parent of a newly-diagnosed neurodivergent child, simply say: how are you? And how is your child? I think that’s all we need.
What gets me through the challenge of, quite simply, not knowing what’s going to happen is the kindness in a comment like the one my friend made in the pizzeria.
Reminding me that this is my calling. Because it is: motherhood is my calling. My children are absolutely central in my life. Everything fits around them.
And positioning me as the right - and best - person to mother my child with his more specific needs… well, it got me.
Annie x
I am a teacher and have a neuro divergent child . It’s time to get momentum on changing educational settings that align with what we’ve learned about autism over the last couple of decades. Mainstream is not main stream really is it ? A tad narrow I think and I’m in it 🤣🙄 great piece , love your work x
Hello Annie. My good friend Stephen Harnwell Jones and his wife Tara have designed a set of communication cards to help their autistic daughter. If it would interest you, you can find them here: https://thegrumpy.club/shop/find-you-voice-set-1-in-yellow . The project is in the early stages, and I'm sure they'd appreciate any feedback, but more than anything perhaps they will be interesting for you. Tara has also started to share her mothering experience on Substack under her publication 'Always Autistic'. I hope you don't mind me sharing!
I love the idea of souls choosing their parents. I feel that strongly myself, and I feel comforted by the idea that my son 'chose' me to be his mother. It gives me some kind of belief in myself that I can give him what he needs, even when I doubt myself.
Thank you for sharing.