Tuesday, 13 November 2012

In which I have an inappropriate strop

God, I'm so sick of looking after other people's hurts.

I'm sick of being the one to smile, and count to ten, and say let's sort this out.

I'm sick of being the one to listen while I'm shouted at, or keep a calmly blank face while others' expressions shrivel with anger or temper. I'm so sick of being the one to patiently maintain eye contact and coax the conversation along while others look away, or avert their gaze to signal displeasure.

I'm sick of doing the conversational equivalent of tugging my forelock, of hovering at my master's elbow, of smiling and bobbing and hoping to please.

I'd like for once, just once, to bellow and stamp and roar, to shout. To clench my fists or narrow my eyes or flounce and storm and say: "Fuck this. What about ME?"

I shouldn't be thinking this. Today, I have to remind myself, is a good day. Today - though you won't believe it after that intro - brought good news. I received the email that told us Grace has a place at the secondary school we have been desperate to get her into. It's the school that has hovered like a vision of Xanadu at the edge of my thoughts for the last two years, throughout the time I've learned how to make nice and fill in forms and attend meetings and cudgel my brain to learn more, to absorb and understand and file away personal hurt that I don't have the time to indulge because I have to stay on track. Today, a nice man who works as Grace's case officer at our local authority - a man to whom, to my shame, I have previously referred on this blog as the Scarlet Pimpernel because he so often seemed to be just out of my reach when I had questions - well, then, this man wrote me an email to say, we've had a letter saying she's got a place so I'm emailing so that you don't have to wait for me to send you a letter.

It was good news. I shouldn't be in such a bad mood. But I am. God, I really am.

I picked Grace up from school today weary after work - though I sprint out at 4pm like a faker I do manage an 8-hour day and a 3-hour round trip commute, smiling and nodding as I squeeze into the carriage alongside sour-faced commuters. My reflection in the tube windows today looked about 74. I blame that loud Sunday night party that our neighbours held til 3am Monday morning, when even the polite couple across the way were throwing up the windows and yelling at them to shut up. I'm 41, it'll take me til Friday to get over the din and the excitement. But as I walked down to the school this evening the thought of telling Grace the news made me smile. I collected her from afterschool club, holding my message inside until we were on our own, as we said goodbye to friends and teachers and collected bag, coat, and the countless daily bits of paper that Grace covers with drawings and doodles and cartoons during her day. We walked to the exit doors, and then suddenly Grace was gone. She was gone because she'd seen a parent and a child that she wanted to avoid. I can't say much more than that because I've been asked not to. Suffice it to know there had been an incident recently in which Grace caused hurt. So once again I went and made nice, which was quite hard because the other party didn't want to make nice. But I persevered. (My shit-eating smile is coming along nicely.) Then I went and coaxed Grace out of the corner in which she was hiding and took her back to the car, where I explained to her again why I'd had to do what I did. Then she shouted and raged and said it wasnt fair. I coaxed and soothed until it passed and ignored the scowls and the cutting eyes.

Then I said to her: Guess what.
She turned to me blankly and said, what.
I said, no you have to guess.
She said, impatiently, I don't know. Am I going to be on TV?
I said, no. Try again.
She pulled her hat over her face in frustration and said, I don't KNOW.
I said: You've got a place.
She paused, then whipped her hat off and turned to me and named the school and said: there?
I said: yes.
And she whooped. A shriek of pure joy. And turned to me with dancing eyes and said, really?
I said: yes.
We laughed.
She said: I love you Mummy. Thank you.
I said: I love you too.

Then we rushed home, ate food, and rushed back to the school for parents' evening, where I made nice some more with another party I can't name for more reasons I can't go into. But then, o joy, Grace's teachers welcomed us with smiles and jokes and sat Grace down beside me and told her what a good term she'd had and how well she done and how pleased they were. They said, you're doing really well. Grace smiled some more. And so did I. And this time it was real.

And here, normally, I'd have the homily. The neat conclusion about what I've learned. But I don't have one of those tonight. Good things happened today, but still, mostly I felt cross and shitty. Grace teaches me vast reserves of patience. It's just that sometimes, I wish other people had more.


5 comments:

  1. That's fantastic news. Must be an unbelievable relief for all of you.

    I've recently finished your book and must say how incredible it was; few books on autism cover both a person's personal journey and detailed information / research on the syndrome itself. Combining the two made it extremely informative and heartfelt.

    My son (4 and half) was recently diagnosed with autism & so many elements in the book resonated (the chapter on SEN made my wife & I laugh out loud; the process is so chaotic, stressful and random - even more so when you step back and see it written down).

    Quite coincidentally, my wife started running at the start of the year and has enrolled in the Nike 10k run next July. She's also be supporting the NAS!

    Thanks for sharing your experiences with people like us who have only recently started the autism journey. Your book and blog entries are a welcome relief from the typical overly complicated medical books or often factual-yet-emotionless case studies.

    Again, congratulations on achieving the place for Grace; I'm certain it's your determination that has made that happen.

    Ed

    p.s. 1) pls keep up the blog 2) I know there are probably loads but what are some good sources you use to keep up to date with news/research on autism? 3) sorry for war & peace!

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  2. Hi Sophie -- we met at Mumsnet BlogFest -- I couldn't find an e-mail on here, but I'd love you to check out BLOOM and let me know if you'd be interested in writing a guest blog for us. We're at http://bloom-parentingkidswithdisabilities.blogspot.ca/

    Hope to hear from you. I haven't had a chance to read your blog but I will. Cheers, Louise lkinross@hollandbloorview.ca

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  3. Hi Sophie, i have just read your book and loved it. Was fab to finally read something that is real and tells it like it is! I am mum to my grace who is 9 and a half, and I also have 2 other girls aged 2 and 6. Grace has aspergers too she was diagnosed at 5 and a half, my life is no spent fighting for her and looking after all 3 girls. I'm amazed at your ability to hold down a job! Truly inspirational.

    Brilliant news on getting the school place you wanted for grace, it proves that the battle for a statement is a worthwhile one(I am currently awaiting outcome of graces assessment).
    Loving the blog, I am right with you on the constant apologising and sucking up, for actions of our daughters! A recent incident where grace refused to get in the car unless she could sit with a certain girl springs to mind, grace shouting that she hated the girls I was trying to get her to sit next to resulted in stony silence from the other parents. The next day when I explained to grace she had hurt the girls feelings she looked at me completely blankly when I said its best to say nothing and shouting out I hate her isn't the right way to deal with it, her answer, but I would be lying if I said I wanted to sit next to her! And it's wrong to lie. Black and white. I looked at her and thought, I am not going to say sorry to the other parents, it is part of you and who you are, they are aware of your diagnosis if they don't understand then that's unfortunate. I just fee like I spend my life explaining and making excuses, grace is grace, I will save my energy today and help her to understand the situation.

    Reading that someone else is in the same boat is great for us mums so keep it up.
    ImogeneTorpey

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  4. I am so glad for the good news, Sophie, and can well empathize with the frustration and anger that simmers beneath the calm, pleasant exterior. Our daughter was suspended this week, and my husband and I contemplate the real possibility of our daughter being expelled from school for the second time in three years. My daughter has to take responsibility for her behavior, but I also wish other kids wouldn't get such a kick out of upsetting her. (However, if the parents of those kids were to approach me and let it be known that they were trying to teach their kids kindness and compassion toward my daughter, I would be open, not hostile.)

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  5. Thank you all for your comments and for sharing both the frustrations and positives of your own experiences. While it's upsetting to hear your stories of the gloomier times - I wish our children could have it a little easier - I do take heart from the number of us that stand shoulder to shoulder though we may not know it and are all so scattered. I wish all of you luck and would like to say how immensely impressed I am by your fortitude. I will keep writing this blog, and do please keep writing back. With all very best wishes, Sophie

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