Monday, 1 October 2012

Well, we're out there ..

"So when exactly was it, when you felt like killing yourself?" said the journalist at the other end of the phone last week. "And that episode when you're crying in the shower, when was that?"

Hum.

A confession: I was never much one for confessions. A lot of confessional journalism is fabulous, searing, inspirational. Some of it opens eyes and breaks down prejudice. Some of it is self-indulgent.

I never said I wouldn't do it: I just didn't think I'd ever have anything that important to speak up about.

But then my daughter - my precious darling big girl, the grace of my heart and so-named - was diagnosed with Asperger's Syndrome, and our world changed.

I felt lonely and confused. Grace felt lonely and confused. I was angry a lot of the time. So was she. She would come home alight with tension after a day of trying to process a world that couldn't make room for her and I would watch helpless from the sidelines as she went off into another meltdown, fizzing and jittering and shrieking like a Catherine wheel. I felt burdened by a huge responsibility and clueless about how to help.

One thing Grace would say again and again was: "Why doesn't anyone understand?" Then she started to say: "I'm so stupid and useless."

So I thought I would see if I could find a way to help other people understand and in the process make my daughter feel better about herself. By then I was noting down my thoughts daily, in a scrappy journal, in a barely-readable scrawl, as I travelled to work by tube. I thought if I could scribble down all my jumbled, jangled responses to the situation in which Grace and I found ourselves, then somehow a way ahead would reveal itself. Then I thought: why don't I just write it all out and ask other people to read it, and see what they think.

I said to Grace: "I'm thinking of starting a blog, to tell people what it's like to have Asperger's."

She brightened immediately. "Yes!" she said. "I want people to know what it's like. Please will you tell them?"

So I started. Grace read every entry. She talked openly about how she felt and was honest when things were bad, when school went wrong again and friendships failed. Sometimes she would read an entry and ask why I was feeling the way I was. We talked a lot about emotions and she learned along the way. (Contrary to popular opinion, my Aspergers daughter is highly sensitive about how other people are feeling and is agonisingly empathetic. She just struggles to interpret emotions in the moment.) Sometimes I would ask her whether it was ok to write about something particularly painful. There was a lot of stuff I didn't write down.

There were some very tough times. When they came around, I thought I should be honest about them. In so doing I've been told by many other parents of autistic children that it's a relief to see someone telling the brutal truth about the downs. There is so much pressure to be relentlessly optimistic that when the outlook seems bleak it can seem a betrayal to be honest about it.

But this was never meant to be a sob story. My daughter's life is not a tragedy. When I read the doleful medical reports, the diagnosis, the regular assessments, I would think: whose child is this? My Grace sparkles and entrances, and holds any room in the palm of her hand. I wanted to show people that she is not defined by her Aspergers. It is who she is in the same way that she has brown eyes and long, long legs and a delicious expression of mischief that always betrays her ahead of a prank. (I hope she never loses it.)

We've both grown in confidence since I started blogging. Grace has full time help in school now, after our a long battle with the authorities to get a statement of educational needs. These days she comes through the school gates beaming and telling me she's had a great day. She's winning gold stars and trophies. And she's looking forward to going to secondary school. Meanwhile I ran the London Marathon this year, wearing the National Autistic Society's vest and on Sunday I'll run the Royal Parks half-marathon for the second time as part of the NAS team. In the last year I've raised just over £6,000. And I've built up my mental strength as well as my muscles.

I wouldn't quite call it a happy ending - we both know the road ahead is likely to have many more bumps - but life today feels good.

Grace is excited and proud to be in the Guardian and the Times newspapers. When we received the first deliveries of our book, which is published this week, she picked it up and turned it over and over with an expression of wonder. I said to her: "Shall I stop writing the blog now? I think maybe it's time that you had some adventures in private." She turned to me in alarm and said: "No! Please don't. It helps me tell people what it's like."

So for now I'll keep blogging. There is still plenty to say. I think and hope the next year will be more positive. I still have worries about my daughter. I fret about the challenges of adolescence and the next stage of her education. I fret about the lack of official support, from the government's plans for SEN reform, to Michael Gove's plans to change the examination system.

But now I know I have a voice and I hope that I can make a difference. And now I know I can run, and get through the difficulties. And I know that now and always I can take my lead from my daughter, whose courage and dignity and warmth is inspirational.

Gracie, my darling pet, thank you. I love you.

If you would like to support me on Sunday's run, and help me raise awareness of autism, please click here

If you would like to read our book, please click here

23 comments:

  1. Sophie, I'm so inspired by what you've done! You're making a difference, I'm sure. I pray that your voice will grow louder and it will be heard where it matters, and you'll achieve every goals you have for this blog and more.

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  2. Thank you Ruth! That's very kind of you x

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  3. Well done for getting the book out there and for all the money you've raised for the NAS. Also well done for getting the SEN! Our daughter Phoebe could be Grace's long lost twin. She's the same age and she also has Aspergers and ADHD. She's very talented at music, drawing and dancing, and like Grace she wants to develop friendships. That emotional, social stuff is a constant challenge. However, she's had a statement for several years now and the support it brings is invaluable. I'm sure Grace will flourish with that support in place.

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  4. What a moving post, Sophie and I'm so glad that things are improving for Grace.

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  5. Sophie,
    It is wonderful that you are chronicling Grace's journey through this blog and raising awareness and sharing information.
    I am sure Grace is going to handle her adolescence and forthcoming years in the same graceful way she has already done.
    I wish you both good luck.

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  6. Wow. I am so inspired, so encouraged about your book. Lots of love to you and Grace.

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  7. What an honest and revealing post. There's no better reason to write than to process your challenges and help others deal with theirs. I'm sure it's a bit daunting to have it all so public, but I'm also sure you're going to be helping so many others with similar difficulties. Congrats again and I look forward to reading more!!

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  8. I read the chapter of the book that was published in the Times this weekend, and was very disheartened at this depressing and negative depiction of what it's like to be the parent of a child with Aspergers. I do hope that the rest of your book doesn't maintain this tone, because it would be extremely worrying for any parents that have just received a diagnosis.

    I am a lone parent, my daughter is 11 yrs old and also has Aspergers. I can quite honestly say that I've never cried or felt suicidal about this. I cried when she was diagnosed at an earlier stage as having hemiplegia (a form of cerebral palsy) & scoliosis. We visited many hospitals (she now has ops every 6 months), and encountered lots of children with far more pronounced disabilities, and I realised that life is about what you CAN do, not what you can't do.

    Before my daughter was diagnosed with Aspergers, I realised that there was something quirky going on. However I quickly learned that behaviours connected with sensory over-stimulation (aversion to noises, food textures, certain textiles etc), were not "bad behaviour", and I learned avoidance and/or substitution techniques to lessen the impact of these problems.It was a little frustrating at times, but hardly as dramatically depressing as you've described. We can even both see the humour now, in the time I was desperate for the toilet in a public place, and had to drag her in behind me by the legs screaming, because of her phobia about hand-driers (couldn't avoid them that time lol).

    I also recognised that she had social communication problems, I had to teach her how to play, script her on social situations and plug doggedly on taking her to different social groups (playgroups, then brownies, play-dates, riding for the disabled etc etc.

    I never knew until about 4 years ago that she had Aspergers, so before she was even 5yrs old, I taught her that aggressive or destructive behaviour was not acceptable.
    At school now, she has (like your daughter), problems with attention span, number blindness, reading comprehension and finds socialising difficult, but her behaviour is always described as "exemplary", and her manners "impeccable". So I don't believe that having Aspergers automatically means that your child is going to be aggressive and have continual tantrums. If my child had been bullied at school and hadn't received sufficient support from the staff, I would have had her out of that school in the blink of an eye.

    Getting the Aspergers diagnosis was actually a blessing, because it allowed me to find out about the condition, understand how it affected my daughter and find better ways of dealing with her sensory and social issues.

    Despite her disabilities and her regular hospital visits and operations, she has a very happy and full life. She rides, swims, does fencing, attends girl guides, has a best friend who comes regularly for sleepovers, and recently (of her own volition) joined lunchtime clubs for needlework and majorettes.She's also travelled all over the world (10 different countries so far). Her ambition is to be an artist or a fashion designer.

    A few months ago she looked at me gave a big happy sigh, and said "I love my life you know, I really have a lovely life. I just want you to know that".

    As for me, I believe that if we were all N.T (neurologically typical) the world would be a much duller place, and that far from being miserable or depressed, I'm actually blessed to have the lovely child that I've got.

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  9. Thank you all for your kind and encouraging messages. I'd like in particular to say hello to Kay Jay and answer some of the questions she poses.

    Kay - I'm impressed by your fortitude and upbeat outlook. It took me a while to get there too, but I did get there eventually.

    First things first: you're right that the Times piece was rather bleak. It concentrated very much on all the hardest bits. That was a decision by the editors of the magazine. My book is more balanced. That's not to say I didn't find it very tough -- we both did -- but we've come out the other side feeling much happier and optimistic and the book was written as a love letter to my talented, special daughter rather than a list of grim times.

    I have always considered myself blessed to have Grace, and the blues came from my struggle to get everyone else to see how wonderful she was -- including her. I feel very strongly that society has progressed precisely because of people like my daughter and yours who are not NT and are wired to see things differently. It's very difficult as a mother to see your child with very very low self-esteem when you know they are in fact very precious, and to feel as though you're failing to help her.

    Many people have told me that the Times piece was a relief - that because there is such a pressure to be optimistic and positive all the time some parents feel disloyal if they talk about the darkness. My book aims to do both, and will hopefully also be a guide in some measure for other parents who are struggling with issues like bullying and statementing. There is a list of resources at the back which includes further reading and websites for advice on bullying and navigating the education system. I wanted people to know that they are not alone and that there are very many of us out here.

    My daughter is happy these days. She comes out of school smiling and telling me what a great day she's had. She's optimistic about secondary school and is already planning to apply to either St Martins School of Art or RADA!

    Thanks again for your thoughts.

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  10. I'm very glad to hear that things have improved for you and your daughter. It's a shame that the Times focused on the gloomier reflections, and didn't give us readers an update on the positive developments that have happened since those earlier times.

    Anything that gives people guidance to help them through the statementing process, is always welcome.

    So best wishes to you and your daughter, and I hope she achieves all of her ambitions.

    Onwards & Upwards

    Kay Jay

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  11. Hello Grace and Sophie:) I've just read your article in the guardian. I'm not great at reading the news these days. I'm either trying to get my skills up and working or caring for my son with aspergers and daughter with hormones and GCSEs to contend with.

    Today I waved goodbye to my son, off on his long journey to Penn in Buckinghamshire. Then I started crying again.

    Your article was like a safety net, I only chanced on it - I'd seen the headline 'Sometimes you don't have to pick a fight to get your way', and the amazing face of Kofi Annan, and thought, no, that's not going straight in the recycling, I'm going to give myself the space to read it! Needless to say, I haven't yet, I saw your article and then came straight to the blog to read more.

    Thanks for the sharing girls. Yes Grace you are right, David is always saying, "you don't understand". The hard thing for mothers is that it's what you desperately want to do. Being too stressed about doing so can actually make the who situation worse. Sophie, all I can say is Wow.. you are an inspiration.

    I will keep reading your posts. You are both very special and brave.

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  12. Hello Josephine. I'm so moved by your message. I keep telling myself these days that I've done enough crying in the last few years to last me a lifetime and that I must stop. And then someone tells me that I've provided a safety net for them and I'm off again. I can't tell you how glad I am to have helped when you needed it. Along with spreading understanding and validation for our children, telling parents of autistic children that they are not alone is precisely why I started writing and one of the reasons I keep going. I hope you enjoy the book and I'll be glad to see you on here any time. Take care x

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  13. Dear Sophie, well done!! Thank you for sharing, and contributing to the education of all who don't understand! My very best wishes to you and your family.

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  14. I've just read the extract from your book on mumsnet and wow! this just speaks volumes to me - I wish i had found your blog sooner. I just want to say thank you for speaking up for these kids. My fear is that your experience is echoed by so many others (just reading about the bullying at school brought back some hideous memories for what my son and our whole family went through at the hands of the school and local authority who were supposed to be protecting him but instead were often the cause of the problems). I was determined that I would be a voice to speak out about what happened to my son but at the end of it all i had no energy, no strength, no fight left in me - i was just so releived to get him out of there. We still have our own battles at home but they are more manageable when the other elements that were causing so much stress were out of his life. Just thank you so much and keep going - you and Grace are an inspiration! x

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  15. Dear Sophie,
    A friend told me about your article and had the book delivered to my Kindle today, I've nearly finished it already, lots of tears but also a feeling of not being alone in this struggle to get things right for my daughter! Thank you, as Beesley Buzz says above, you are both an inspiration. I'm going to read to my daughter tomorrow the lovely lovely letter that Grace received from Debi, it was absolutely wonderful.

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  16. So excited about your book and what it stands for. I love that you are pushing yourself out of your comfort zone and putting yourself out there to help other mothers and children. What an inspiration!!

    So proud to have you with us at World Moms Blog!

    Jen :)

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  17. Sophie, what a great inspiration you are. I truly am happy for you and the success of your book. it will serve as an inspiration for many people who need it, I am sure about it!

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  18. How wonderful to have your book in print, Sophie, I get the impression it's already helping a lot of people. All the very best for the future, too!

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  19. Well done on getting the book published! Hopefully it will break down barriers and raise awareness, especially as aspergers is less common in girls. My little boy is 7 and was diagnosed earlier this year, so I've just started on the "journey". Blogging is a great way to focus thoughts and feelings and stay sane.

    By the way, I followed your link and have made a small donation to show my appreciation for what you are doing. x

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  20. Hello everyone - thank you THANK YOU for all your encouragement and support. In particular, to Beesley and Lel and Louise, I'm immensely moved by your comments and so glad to be of help. I will be thinking of you all while I'm plodding around the Royal Parks in Sunday's half-marathon (in the rain!!) - thank you for your kind donation Louise. xxx

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  21. Dear Sophie
    I was also crying after reading the Guardian article - on Monday morning at work. A colleague, who I had randomly talked to at the time of finding out what was going on with my son - had sent me the link.
    The bit about the children not being able to sit on the sofa and having to go out there every day did it for me. There were the tears and the images of me sending Sam off to school... he is only six and unaware of much. But social life is not easy and I am so impressed by how he bravely faces the world day after day.
    Knowing about Asperger has been great for us. Since I have figured it out, we have been so close. I instinctively had done a lot of the right things but I am calmer now and can handle the difficult bits a lot better.
    Thank you for writing.
    Corinne

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  22. Dear Corinne,
    Thank you for your message and for sharing your own circumstances. Sam sounds like a lovely boy and very courageous and positive. I hope the book helps you through a little bit, if only to know that you're both not alone.
    With very best wishes
    Sophie

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  23. Hi Sophie, just discovered your blog after it was in the paper. I'm a Music Therapist with a special interest in Autistic Spectrum Conditions, a fellow blogger, and recent convert to running - I've done a couple of half marathons but not managed a full one yet. The mother of one of my clients ran with you in the NAS London Marathon team!Keep up the blogging and running, it helps you and it helps ithers understand the challenges that parents and their children face when the child is diagnosed as on the spectrum. Grace sounds like a very special young woman, and you must be really proud of her. I look forward to learning more about you both.

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