Tuesday, 3 April 2012

See the funny side? Don't make me laugh

I am drying Betty after her bath with a giant cornflower-blue towel that exactly matches the colour of her eyes. She is giggling and twirling and wiggling, forcing me tiredly to reach and trap her and bind her over and over again in order to wipe away the remaining beads of water on her sturdy little body. I am so tired but this is the last job of the day and she is so lovely and so I hold my temper and keep going.

I let go of her to reach for her clean pyjamas on the radiator beside me, and she springs free, backing out of my reach with a mischievous twinkle. She bends, scoops the towel up and throws it over her head, then stands just apart from me, tottering under the heavy material, her laughter muffled, waiting to be claimed. I protest, and she peeks out from under it and beckons me in. I go closer and closer to her and she holds out the towel like an awning, a refuge, until I am under it with her, breathing in the heavy damp air that smells of her baby body and nose to nose with me she raises an eyebrow and I wait expectantly to hear what it is she wants and Betty asks me: "Want some cup of tea?" And the bubble of sour anxiety that I have carried inside me all day pops, just like that. I snort out a laugh and Betty joins in. We laugh and laugh and again I thank God most fervently for my baby, who makes me laugh and relax and forget for a while about my worries for my big girl.

When you have an autistic child everyone says you've got to laugh, or else you cry, but more often I cry.

Everyone says, you've got to have a sense of humour, but actually, increasingly, I don't.

Everyone says, come on, can't you take a joke, but these days, the answer is often no, I can't.

Most of the time I can pretend though, and most of the time I'm good at it. I have a perma-smile from years of practise and a whole range of artful poses: the smile and the nod; the half-chuckle; the sympathetic roll of the eyes; the "goodness, I know" moue of the mouth; the shrug that says "hey, what can you do?" I am diplomatic, and calm and I pour oil on troubled waters and I take deep breaths.

Sometimes I use these responses when other children bully my daughter and laugh at her and tell her their rudeness is her problem and I have to face their parents in the schoolyard. Sometimes I use them when the school phones me again to tell me of another incident and explains that Grace really must learn to react more calmly and that often what happens is her problem. Sometimes I use them when the local authority needs yet more paperwork and proofs and reports and appointments before they will help us and the problem of chivvying and collating and the burden of proof is my problem.

Today, I used them when a crap, so-called comedian made a crap joke about Asperger's on Twitter and then told me to fuck off when I objected. Tonight, I am using them as a television channel airs a programme about a person with Asperger's struggling to find love and calls it "The Undateables" and effectively tells me and all the other parents who fear daily for our childrens' fragile psyches to fuck off, if we object to the name of the programme, it's our problem.

Most of the time I use these responses because not to do this, to breathe calmly and shrug and smile, would make daily interactions virtually impossible. I do this because I have to keep going and I have to make people like me in order to get good results for my daughter. I do this because I refuse to allow myself to be infected by the small-minded meanness, ignorance and crassness that so often comes our way.

But inside, often, I am boiling.

Inside, it is very not alright, fuck you very much.

Inside, I am banking the anger and pressing it down until it is small and hard and hotter and more powerful and it provides me with fuel and drives me to make things better.

And then I will have the last laugh.

Grace Under Pressure: going the distance as an Asperger's Mum, will be published by Piatkus Books in October

10 comments:

  1. A wonderful piece of writing. Yes the anger will drive us to make things better, it will drive you round that marathon course and I will be with you every step of the way. xxx Louise

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  2. Hi, I read half way through your post and need to comment.
    I love asspies. People are not designed to find love like on that tv show because love cannot be catagorised with logic, my love is in a different country who I have never actually met in person yet we speak almost daily over skype for hours. for 3 to 4 years.
    I new nothing about autism apart from I read when a kid the incident with the dog in the night time or whatever it was called.
    I'm open minded and the querks of aspieness I thryve off, no polite conversation, stimulating intellectual debates, curiosity etc.
    Don't view her as some defect because society does, view her as a genius in waiting who will only need 1 or 2 friends if that, a few interests and more important than all that your understanding fuel her with love and confidence explain to her the shitfest outside and comfort her, please don't shover her on medication to make her fit in. Difference is to be treasured above all, the mind and thoughts and ideas that people have are far more potent than their social mask or their happy smiles or their perfect eyes and face and all that bullshit.
    Sorry for ranting if you wish to e-mail humanity121@gmail.com Fare well.

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  3. Hello Humanity: thank you for your comment. I view my daughter as a strong and beautiful girl who can do anything she sets her mind to. Why on earth would I medicate her? I am sorry that you've clearly had such a rough time but I do hope that if you read my blog you'll see that it is by and large a love letter to my wonderful girl and an appreciation of her and others who share her condition. Ranting is good and necessary sometimes to blow away the steam, but I think and hope that right now and here it's a little misdirected. Try reading the rest of my post and perhaps some other ones too. All the best. Sophie

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  4. I am mainly referring to americanism where all i've seen is people viewing it as some sort of disease to be iradicated. As Brit's we're usually not as hyper-sensative to difference, well some of us are obviously but we're kind of a bit more chilled and my instant instinct was to go with what i've seen of people over there. It was a snap instinct to post quickly as enough people get fucked over as is in this society without being on the spectrom with parents who are scared and coersed by a medical industry which can profit greatly from fear and pump the kids up to the eyeballs with crap that's addictive.
    I wasn't really judging but prevention of such ideas is better than them taking root so I posted quickly.
    Obviously it offended you which wasn't my main intent, i'll go and read through the thing but yeah just pointing out my position. Time to do the horrible captcha thing that will take forevs, ciao.

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  5. Don't worry, you didn't offend me. I just wanted to ensure that your comments weren't based on anything you'd read here.

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  6. Hi Jake still wants to understand your views on Education,
    you can replay to my e mail address simon.n.newby@gmail.com or leave a comment on Jakes Blog http://jakeofwinterhill.blogspot.com/
    Jake is 8 years old,

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  7. Hi Sophie,

    Yes, I didn't see the programme, but I did see an advert for the "undateables" and I am offended too. There is a lot wrong with the world and people (even some professionals) think some pretty dumb things. As a nice counter-balance, I just read a great article in Asperger United (the magazine for and by aspies produced by NAS). It's by Luke Beardon. I think I love him. Here is a little bit of of it - "Some myths that clearly speak for themselves. Autistic people can't... have a relationship... The above are so obviously insanely ridiculous I shall not waste any more words expanding on them. There is nothing that an autistic person cannot achieve in life as a result of being autistic. All sorts of thigns will come into play, of course, but autism is not a barrier to anything. Those professionals who... predict doom and gloom at every turn should be ashamed. They are not fortune-tellers and there is no way of knowing at childhood what the future holds. Yes, life is considerably tougher for most autistic people than their PNT peers, but it does not mean that dreams cannot be achieved."

    I reckon loads of autistic people date, before or without any sort of diagnosis, because no-one had previously told us that we couldn't. This is just one of the dangers of a diagnosis in a culture that things we cannot do anything, when actually we can. After all, aspies dating and mating is a major way that little aspies are made, so lots of people are definitely doing it! A main task that we all have is to NOT actually believe other people telling us that we cannot do stuff!

    I have my fair share of anger issues too. But it is a really imperfect world and I'm just not trying so hard as you to fix it, because it would upset me too much. I try to forgive all the wrong people and that helps because it calms my storm of emotions about it all. When I am feeling calm and not about to rip someone's head off, I might be more effective if (and sometimes I don't) I decide to take any action about it. I'm not saying I'm right. Perhaps I should be taking on more fights. This is just the way I'm dealing with it all at the moment.

    I'm still really enjoying your blog and checking it every week. I love the stories about you, Betty and Grace. It's so loving and nice. I would like to be in your family.

    Debi x

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  8. Dear Sophie,

    You are a beautiful writer. I am always moved when I read your blog.

    My brother was born 50 years ago, he was also a 'Rubella baby' (my mother contracted German Measles whilst pregnant with him). He is still with us and at 76 my mother still fights daily for his place in society. She has been courageous, devastated, exhausted, overwhelmed and proud over and over again. She has also raged.

    This is what I wanted to write to you about, and forgive me if you feel it inappropriate. I see my mother's body now crippled with anger, sore with rage. She pushed it down so far it ate into her bones. I'm a mother with a child with physical problem, I'm a sister who fought against people who ridiculed her brother and I am the daughter who ached with her mother's pain. Along the way I have done a great deal of soul searching, inner work and personal development and learned something I would like to share with you.

    Don't bank the anger down, let it rise to your heart and it will transform, it will change to power, to effective communication and to inspiration. The times my mother used the energy underneath the anger (the heartbreak, despair and love) to get into her heart was the time she was the most successful in getting what her son needed. When she was feeling pure love - not romantic love or sentimental love, but pure, universal mother love - she was able to get other people to feel and understand, and they softened and worked with her rather than against her.

    I probably sound a bit evangelistic – or even worse, patronizing. Please forgive me if I come across like that, this modern form of contact can also lack a personal touch. From your writing I can feel your love and your pain and as someone who has walked along beside a mother on a similar path, I hope my offering might give you some solace and support.

    With love,

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  9. Dear Kim, I am immensely moved by your comments and will take them to heart. Thank you for your wise words and your encouragement. You've given me very valuable feedback.
    With love to you and to your family. S

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  10. Beautifully written. As a Mum of one child who has quad CP & a life limiting condition and also as a Mother of a son who has ASD & GDD I really feel where you're coming from and understand the pain, worry & anger. My daughter is 14, my son 10 (although I have 4 other children too). Recently I've started to help set up a charity for children with disabilities that I will Chair. Since starting it I feel less bothered by the rest of the world, in fact I pity many people who are feckless and make jokes about disability. Doing this charity work I have met the most amazing people, parents and children. Surrounding myself with these people is an absolute pleasure. I suppose in some ways it's made me care less about the rest of the world and their stares even if at times it still hurts. The charity I'm chairing holds monthly play parties for children with disabilities and their families, thoughtful young people from local secondary schools come along (volunteer their time) as play partners to the children with disabilties. Our mission statement is to build partnerships between disabled and non disabled children and their families, within the local community. The scheme has been running a year (was launched by local child development team) and is a great success. It really helps break down barriers within the community and I hope is raising awarness. The helpers are fantastic and genuinely care about and have forged great friendships with the children. It's restored some of my faith in human nature :-)
    Anyway, what I really wanted to do was just to send you and your family my love, and tell you that you sound like such a wonderful Mum, your family are very lucky to have you, Jo

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