How one 9 year-old Described her Brother’s Autism in just a few pen strokes

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.

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Dealing with criticism

Welcome to my second ever guest post. This post was sent to me by someone I know well and who follows my blog. As a fellow blogger, and now successful author of a book, Jonathan has had his fair share of criticism and bad comments. Here he shares how best to deal with them.  We can all learn from this!

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Dealing With Criticism

Take a bus with three children under five and you will instantly get a reaction. There are the vacant stares, the enthusiastic smiles and, of course, the grim glowers of disapproval. In fact, whatever you do, if it is worthwhile or slightly abnormal, there will be critics. Once we accept that, we have to figure out what to do with them.

Since burning them at the stake, filling their shoes with silly string and torturing them with Barry Manilow songs are all against the law or impractical, we need to find something more constructive. As a dad of three, PhD graduate, interpreter and writer, I have had my fair share of rejections and criticisms and knocks.

One of the first lessons I learned about criticism, and one I am still learning, is that criticism needs to be put into context. So, for example, if you have written a book that a hundred people love, it doesn’t make any sense to get caught up in the views of one person. If you have two children whom you love and who are managing, then it shouldn’t worry you that one person on a bus or commenting on your blog tries to lob over a few choice words.

Their life isn’t yours and frankly, I doubt they would do as well as it as you are. As much as it seems sometimes that every second person is giving you the stink eye, the truth is that there will likely be people around to encourage you and affirm you. As a Christian, even when I really feel that I can’t find those lovely positive people, I can rest in the love of God. The opinions of one weirdo mean nothing to someone who knows they are already unconditionally loved.

When you hear one person mouthing off, concentrate on the affirmations of those who have been praising you. When you get one catty remark, just remember that someone else’s opinion of what you are doing is not the same as your own incredible value. Let me tell you now, you are valuable and cherished and living a worthwhile life and anyone who can’t see it is not worth listening to!

Once you learn to contextualise criticism, you start realising that there are two types of critics. The first, and oddly the most annoying, are the helpful critics. The people who care about you and want the best for you. They only ever share a correction to keep you on the right track and even if they get things wrong, you know they mean well.

Why are they so annoying? Precisely because, in the majority of cases, it helps to listen to them and you find yourself with an adjustment to make or some advice to take on board. There is nothing worse than actually realising that you still need to learn teachability and humility. Or maybe that’s just me! 😉

The other type of critic doesn’t really need a name, although you can suggest one in the comments if you like. At best, they are unhelpful, at worse, they are destructive. They are the people who see you out with a double-buggy and ask if you know where children come from (if you didn’t before…). They are the people who tell you your work should be thrown in the bin or your children are awful or…

It’s for those people that you need to exercise patience and memorise two rules. The first is that, as marketing expert Seth Godin says, being criticised for something is better than no one bothering to talk about it. Take the criticism as a badge of honour. You are doing something worthwhile that others feel is worth remarking about. Wear the badge of criticism with pride.

The second comes from Bill Hybels and still makes me take a sharp intake of breath. He argues that, even with the meanest, most unkind critic, we need to try to find the critic’s grain of truth. Maybe that stern look in the supermarket from a perfect stranger could be a reminder to react less to childish behaviour. Perhaps the odd look from the old lady on the bus reminds you of the challenge you have taken on and how much of yourself it will take to just get from day to day.

Even the harshest critic can teach us something. The biggest thing I am learning from my critics is that I still put too much importance of other people’s opinions and still tend to put too much of my value in the things I do or create. If I measure my self-worth by how well my children are behaving today or worse, how well I am behaving today, I am not likely to get anywhere.

As I learn to separate who I am from the things I do, I realise that I can change what I do more easily. And once I know that I can grow, I realise that others are on the same journey. We all have bad days, grouchy moments and get annoyed when things don’t go our way. We are all growing. Whenever I remember that and I remember that I am loved while I am not there yet, the criticism doesn’t affect me nearly as much.

I still want to buy some silly string, though!

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img_5942Jonathan Downie home schools three children under five with his wife Helen, whist being a full time conference interpreter, researcher, author and speaker. He is based in Edinburgh, Scotland. He can be found at:

Twitter: @jonathanddownie (personal), @integlangsbiz (work)
Linkedin: https://uk.linkedin.com/in/jonathandownie

Website: http://www.integritylanguages.co.uk/