There was nothing special about Thursday evening as I worked my way through the typical bedtime routine for my 9 year old twins. They had already had a bath, clean pyjamas on, eaten some supper and now they had moved into their separate rooms ready for stories, kisses and pre-sleep chats.
It’s hard to split yourself in two (or three, or four even if you are blessed with a quiver full) but my daughter willingly lets me see to her brother first most nights. She sacrifices so much for her autistic brother and this is just another example of how she puts his needs before her own daily. While she amused herself quietly with what I assumed was some colouring in or reading I continued on to settle her somewhat hyperactive brother next door.
I read the same story as always. He chooses the same story every night despite the fact he has a whole basket of books in his room. His autism means routines should never change and repetition is very much the name of the game. Unlike his sister he isn’t going to talk to me at bedtime about his school anxieties or fall outs with his friends. He has no friends. I have no idea what goes on at school (or anywhere he is out of my care) and at nine he has no spoken language. I hug and kiss him. I get nothing much in return. One day I might, but not tonight. I tuck him in, leave the room and turn off his light.
As I go next door to his sister her eyes light up as she clutches a little piece of paper to give to me.
“Mummy, I’ve been thinking about Isaac tonight. Can I show you something Mummy?”
And at that she handed me this:
I asked her to talk to me about it.
“Mummy, these are the wires in my head. One is the talking wire, one is the brushing my own teeth wire, one is knowing my times tables in maths wire, one is knowing how to write wire, this one is playing with friends wire, this is the knowing how to read wire…”
She named all twelve straight lines she had drawn and said how for her, like most other children, she was able to do all of the things she listed. She talked about how some of her wires connect right away and others took time but they ‘knew where they were going’ and as she gets older and learns more ‘new things’ she will have ‘more wires that know where to go and connect up straight’.
I was amazed that a child could be so aware, so astute and so insightful. I let her continue on.
‘And this, I think, is my brother’s wires mum. He finds everything so hard doesn’t he? This is his talking wire mum. Look it goes to the connection for brushing teeth. No wonder he can’t talk when his brain gets confused like that! This is his writing wire…it’s supposed to be connected to the writing one at the bottom but instead it’s connected to the playing with friends wire. It’s all so hard when your brain gets confused but I know he is trying! I mean everything must be so hard when the wires are all jumbled up like this!’
I looked at her with tears behind my eyes. If anyone will advocate in life for her brother when I am gone it will be his sister. She understands him like no other.
My daughter knows I write. So I had to ask her.
“Naomi, is it ok for mummy to share this with other people? Is that ok with you?”
She smiled and in her usual determined way took the sheet back from me and pointed to her strokes again.
“Only if you make sure you tell everyone that it’s ok to have autism. Make sure people know Isaac does HAVE wires. He has a brain. He is trying. If I could make his wires straight Mummy I would, do you know that?”
I hugged her tight and kissed her forehead. She doesn’t want her brother to not have autism. I know that. She just wants to hear his voice, be able to play with him, brush her teeth beside him, write stories with him and practice her times tables with him like she does her friends from school.
She might want a brother with straight lined connections, but she could not love her autistic brother more if she tried, with crisscross jumbled wires and all the wonderful quirkiness that that brings.
Her understanding maybe over simplified in many ways but her fierce protection and love can never be denied.
I keep looking at that piece of paper.
She’s so right. My son is severely autistic with significant learning difficulties. He will need care all his life. But she’s spot on: he still has wires. He still has a brain. He can learn. He has potential. Life maybe much more confusing for him with wires that go different ways to what ours do but is that such a massive problem?
Maybe, just maybe, having straight lined connections in your brain is not for everyone. The world would be a very boring place if all our brains looked the same after all.