Monday, 28 November 2011

The note

It's a small piece of paper. A bit crumpled around the edges. Beige. The handwriting is careful: sloping letters linked by curls at the bottom of each one, done with the care of a child just learning to join them up. Looking at them, you can imagine the tip of a tongue protruding as the author presses down with the brown felt tip pen, leaning a little to the right. It would be perfect, but that the exclamation mark has been smudged.

Grace brings it to me in the kitchen of our home. She is white-faced. She holds it out to me and tells me that she has just found it in her schoolbag. I watch a torrent of emotions chase across her features. She laughs, then frowns. As she turns to me she is angry, uncertain, disbelieving. I read the note and look up at her and open my mouth to speak.

Then: fury. Flinging herself at me with a howl of pain she snatches the note from me and tries to pull it to shreds while rushing back across to the bin on the other side of the room. I run after her and turn her to me, grabbing for the note, hating it but wanting it and needing to preserve it, thinking fast: I have to show this to the school tomorrow, she mustn't destroy it. My daughter's face is a mask of anguish. I hold her to me. She is hot, raging, sobbing. She smells of fresh laundry and school and hormones and pain. She recounts another huge row at school, the one with the horrible child, the one that got worse and worse until she lashed out. Her voice is muffled: she speaks into my chest, hiding her face in hurt and anger while she tells me how she stamped on his foot and pushed him.

Then we have the conversation. The one we both hate, and know by heart.

I tell her that I love her, and will do everything I can to help her, and that I know how hard this is. Then I tell her that as soon as she touches or hurts someone then no matter what they have done, no matter how they hurt her feelings, no matter that they laughed, or poked, or whispered with others and narrowed their eyes -- no matter any of this, it's game over when she hits them.

She breaks away from me and screams and stamps her feet and shouts at me. They're stupid, they're horrible, they've all got it in for me.

Listen, I tell her. We all have jobs to do. Mine is to look after you and to sort this out, to talk to the school and make sure they fix this. Their job is to stop the bullies and to protect you in class. You have a job too, I tell her. Your job is to count to ten and walk away. You have to try, I tell her.

I can't help it, she throws back at me. She is calmer now, but still red in the face. Her hair stands out from her face in teary furious knots. I've got A- A- Aspergers -- and she is sobbing again.

For a moment neither of us say anything.

My daughter looks at me. What is the point of me, she says flatly.

I force a smile and tickle her cheek and pull her to me. I tell her all the wonderful, marvellous things that are the point of her. I fold her in a warm hug, but inside I shiver.

Later that evening she comes down from her bedroom. I have just finished writing a long letter to her headmistress and I am sitting on the sofa listlessly watching a mediocre film.

Grace appears in the doorway in pink rumpled pyjamas, the eyemask she needs to wear pushed up onto her forehead. She looks soft and pink and very very young. She says to me: I've been thinking and they're right. I am mean. I shout at people. I wish I wasn't here.

I think of the run I failed to get up and do this morning, the strength training session I failed to do a few days ago and I remember what the point of it all is and I am heartbroken to have been given this kind of reminder. I am frightened for her, and I am frightened that I can't fix this for her.

We curl up on the sofa and eat sweets and eventually start to giggle occasionally at  the silly film. For a blissful while we are just us two, mum and daughter and she is just a nine-year-old who can't quite mask a fleeting smirk when I say that yes ok she can stay up a bit later. I would give anything for it to be just this, and only this.

8 comments:

  1. I can't imagine how hard it is for you and Her. Beautifully written post.

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  2. This post has just moved me to tears. I am so sorry for what she's going through, and you along with her. I don't know what else to say, except I hope things get better soon. x

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  3. Great post as ever. Wish you had something happier to write about though. Grace sounds very wonderful.

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  4. The Point of You

    Grace, sweetheart, listen because I think I know what the point of you is.

    1% of the population are spectrum folk. That means that you probably don’t know all that many yet, but there are a lot. There are 62,300,000 people in the UK. So that means 623,000 are on the spectrum.

    Most of these people have not yet discovered their aspieness. E.g. I’m a 33-year old Aspie and Aspergers wasn’t even known about when I was at school. They’re getting better at spotting aspie kids now, but adults who are doing really well and achieving lots aren’t anywhere in the statistics because no-one has ever spotted them. This generally means that all people know about are the aspie adults with the worst mental health problems and the most severe autism. The likes of you and me don’t tend to be known about at all. This causes some problems, for example, everyone (me included) tends to over-react when they get a diagnosis and imagine that things are far worse than they actually are. Also, now, when I tell people I’m an aspie, if they know anything about the spectrum, they tend to assume that I cannot do stuff. They are staggered and amazed that I live independently from my parents, in my own flat. When I then tell them I used to be a type of lawyer and that I have paid off my mortgage, they then look like they are going to fall off their chairs. The point is, that no-one has quite understood the likes of you and me yet. The professionals get some bits right, but other bits, they can get really wrong. In a way, I was quite lucky because I didn’t know that I was an aspie until age 29. Not that there is anything wrong with being an aspie or knowing about it. But I was protected, at least, for a long time from other people’s mistaken beliefs that we are not very capable. Don’t get side-tracked by any of these wrong beliefs. It’s really important that you keep believing in yourself and how incredibly capable you are.

    Don’t let anyone tell you that you cannot do anything because of being an aspie. It’s not true. Some things will be harder than for other people, but nothing is impossible. Also, some other things will be much easier for you than for other people. For example, things that are much easier for me than most people include having perfect pitch, music, French and maths. Your gifts might not be exactly the same as mine. But there will be things that you can do incredibly easily that other people would find really hard.

    Some super-wonderful things about you are:

    You are very, very bright. Half of people on the spectrum never learn to talk and lots have a learning disability. This means that you will be able to think your way around problems that others might think would be impossible for you. You will be a great communicator. Sounds impossible? Communication is one of the “triad of impairments” – yeuch, what a horror of a term – really, these words can be pretty harmful and they are only used because the people who first discovered and wrote about the autistic spectrum are non-spectrum psychologists and not aspies. But I can tell you it isn’t impossible to be an aspie and a good communicator because people tell me that I am a fantastic communicator. Because you are so very, very clever, you will be able to find ways around the things that are extra-difficult for you.

    You are able to trust – you trust your Mum enough to tell her what’s happening in your life. That is so fantastic, sweetheart. This is such a good strategy for life. Never bottle anything up. I will learn this from you.

    You are absolutely gorgeous – I’ve seen your picture on the blog.

    You are able to love. I’m only just learning this bit now, so you are years and years ahead of me, emotionally, already.

    You are creative – you dance, sing, act and dress-up.

    You’re funny. This is a very attractive quality and will win you friends.

    You are so, so brave. You don’t give up. This is incredibly important.

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  5. ...cont.

    You tell the truth. This is a lovely quality and people value you for this.

    You give great hugs and kisses. I’m only just learning how to do this. Again, you are years ahead of me. And other people will love you for it, your whole life long.

    You encourage other people – you told someone that you liked their drawing. This is fantastic. Everyone needs encouragement, and most British people tend to be incredibly bad at giving it. Aspies find it really difficult to know how other people think and feel, but we can be fantastic at encouraging others, supporting and affirming them.

    You are not limited in your choices to what the world sees as “normal”. This is a really valuable trait to have. It gives you a lot of wiggle-room to choose what is right for you.

    You stick up for yourself. Again, you are way ahead of me in this because I have never managed to do that. It is really hard to control all of our emotions, because we feel all of them a bit more strongly than non-spectrum folk do. I’m not saying that lashing out at people is a great strategy and it’s a good plan to listen to your Mum and do your best to control yourself. But there is always an upside to these things, and the upside of this is that you are no-one’s doormat. Probably my usual way of locking everything inside is far worse.

    You are not a bad person because you get angry. Everyone gets angry. It’s a natural emotion. It’s a useful emotion. If someone kicked me in the face, then the right emotional response is to feel anger. It would be a bit stupid to feel pleased about it, and anyone who felt like this would not live very long. So, it’s completely right to feel angry – just try to find a way to express it that doesn’t hurt other people. Try your best to control your anger. But if that doesn’t work out, you are still not a bad person if you have done your best. You don’t do anything for no reason. It’s only because you are getting provoked beyond the point that anyone could possibly bear. This does not make you bad. Just do your best – it’s all that any of us can do, and it’s all that anyone can ask of you.

    You have a great destiny. Those 623,000 people in the UK who are on the spectrum - they need YOUR help. They will see you succeeding and being a great example and role model for them. They need your encouragement, your wisdom and your love. They need you to be a voice and speak up for them. They need you to tell the world things that they cannot tell it, because of their communication difficulties. They need to know your coping strategies. And there is a whole load of other people who need you to explain what it’s like to be an aspie to them, because they don’t get it. Even many of the professionals don’t get it. They need you to explain things to them from your point of view. And they will be fascinated. They will think you are incredible. They will go away thinking: “Wow, I’ve never met anyone like Grace before, she’s so inspirational, she has completely changed my idea of what the autistic spectrum is”. You will change people’s lives. This is a great destiny. And no idiot of a 9-year old boy is going to keep you from that. It’s not possible. This is also a destiny that would be impossible if you were not an aspie. I’ve written a book. But if I was the same as everyone else, I could not have written my book, and no-one would be interested in reading it.

    ...cont

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  6. ...cont

    You will be able to help and encourage aspies of all ages. When you are older, you will be great at playing with children, aspies or otherwise. Aspies always know what it is like to be a child, but it is something that other people seem to forget when they grow up. In many ways, aspies have a lot more fun than everyone else. Non-aspies are really worried, all the time, about what other people think of them, and it really restrains their behaviour and makes their lives a lot less fun than they could be. We don’t have this problem. In some ways, I think other people would like to be more like me, but they’re not brave enough.

    You will be great at teaching and explaining things to other people. Aspies are great at communication and we are fabulously clear and coherent. This is a fantastic skill when it comes to talking to children, to people with autism and to non-native English language speakers. I can often explain things to people in the right way, whilst other people make the mistake of talking in a too complicated style.
    Our uniqueness is something that I can give to people – I’ve only just discovered this. And some people really like it. Most people don’t understand us very well, but some people will just “get us” and it’s fantastic that such people exist.

    Also, it is really, really hard being an aspie sometimes. But there is often a way to turn our bad experiences into something good. When people misunderstood me and got angry at me for something that I didn’t intend, I wrote these things down in my book, to explain my point of view and help everyone reading it to understand better. When I had some other bad experiences, I found out how to get healed, emotionally, and then wrote a guide book to help other aspies avoid the mistakes that I had made, so that they will understand better and be safer than I was. When I meet another aspie who has been bullied, I know how she feels because it has happened to me, and so I can empathise. It feels so often like we are on our own and this is all just happening to us. But we are not alone, ever. You will be able to turn some of your bad experiences into something really good and worthwhile.

    Another thing – just because other people say something doesn’t mean it is true. Even if a lot of people say it. Some people lie for their own reasons. Many people who feel insecure about themselves (and who feel broken and hurt inside) look for someone else to pick on, just to make themselves feel better. This is really wrong and should never happen, but it does. Other people just make mistakes and don’t take the time and effort to properly understand – they leap to the wrong conclusion.

    ...cont

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  7. ...cont

    Here is an example of lots of people saying and thinking something that was not true. A long time ago, everyone thought that the sun went around the earth. In fact, a man called Galileo worked out that it is the other way around - the earth goes around the sun. Everyone told Galileo that he was wrong. But Galileo was right and everyone else was wrong. I don’t care how many people tell you that you are mean. They are just as wrong as everyone who thought the sun went around the earth, and you are not, not, NOT under any circumstances to believe this. You are a lovely, sweet, brave, brave girl who has just been pushed too far beyond what any human being could reasonably bear. This is not the same as being mean. You are not guilty. Not guilty. No arguing. This is the truth. I’ve now met a lot of aspies. Some of them have a lot of difficulty controlling their anger. But I don’t think I actually have met any aspie who is mean. We simply aren’t mean people. We are some of the nicest people on earth. There are plenty of good things about being an aspie, and this is one of them. Lots of non-spectrum people try to manipulate others for their personal gain. Aspies don’t do this. It’s not in our nature. Bullies are mean because they hurt people intentionally, for no reason. That is the definition of mean. You are not mean.

    Precious one, you are simply fantastic and you have a wonderful future ahead of you. You are more capable and move lovely than you can possible know.

    Lots of love,

    Debi xxx

    P.S. Sophie, there is a “triad of perspectives” on autism, these being (1) the aspies’ view (2) the parents’ view and (3) the professionals’ view. These are three really different ways of looking at the same thing. In fact, they can be so different that you wouldn’t recognise that we are all talking about the same thing. Try to get information from all three sources. You are probably getting a lot of (2) and (3) from NAS. If you’d like me to provide (1), then you can always drop me an e-mail (debi@aspiedebi.com) and I’ll give you my phone number. I’ve also got some of my training materials that I could send you. It’s just communication is a bit limited in blog posts so I can’t do a lot here.

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  8. Debi, I am in tears reading this. I haven't shown it to Grace yet but I will when she gets back from school and I think you are going to rock her world! Going to email you separately now but thank you THANK YOU for this. xxx

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