Tuesday, 14 September 2010

The One with the Award

It's the first anniversary of Strange & Beautiful and I find myself in Butlins, Bognor Regis, attending The MAD Awards ceremony.

It's a bit odd being in a complex dedicated to family fun all on your own.

I caught myself swallowing back the odd tear when I saw little kids with their parents, and I don't think it was just because I was missing mine. But more of that later.

On a whim, I decided to stay and spend the day on my own.

I used to love my own company but it's very rare that I get to do my own thing for an entire day now. When I do manage to keep the odd moment back for myself, it takes so much planning that it feels like I have to DO as much as possible to get the most out of it.

So, after delaying getting dressed until 1 in the afternoon, I strolled off to indulge my twin passions- taking photographs and mooching around seaside charity shops. I can't help but love a bargain (netting a Nina Simone biography & a (new) book of old Polaroids!) Top that off with a dinner of Pot Noodles and I was on a total nostalgia trip back to my 1980's student days.

It has felt like the first totally relaxing day I've had since forever.


So back to the tears. I think it's because I feel cheated out of the early years with Lyla and Mya- it should have been a happy, fun time. And it wasn't.

Life was difficult before Lyla's diagnosis as her behaviour was so unpredictable and she tantrumed violently and constantly. She spent most of the time going on the naughty step. I feel bad about this as it was the complete opposite of what we should have been doing.

If we'd had an earlier diagnosis, things could have been really different- for all of us.  I kept believing people who told me that all kids tantrummed. Yes, they DO, but not like THIS. Funnily enough some of the same people told me after the diagnosis that they always knew something was wrong...

When Lyla was eventually diagnosed, I was devastated it meant this wasn't just toddler tantrums, this might be forever: Lyla couldn't go to sleep as her brain doesn't produce the sleep hormone Melatonin. Every night, from 7-11pm, she would get hyperactive and attack me and our home. I dealt with all this on my own and it took a lot from me, both physically (broken teeth, black eyes, bruises and more) and mentally.

Things have changed and improved, but being the parent of an autistic child can feel like a constant, daily assault on you as a person.

So I'm very pleased to announce that I've won The MAD Award for Most Inspiring Blog 2010! I really wasn't expecting to win as the other blogs are really good- Baby Baby, Battling On & Everyday Parent. Winning the award means a lot to me because it shows there is support out there for a blog about autism. Because it's a hidden condition, there is still so much more work to be done to raise awareness so that families can get the help they need and people with autism can be more understood by others and treated with respect.


Thankyou to all of you who voted, Sally Whittle who organised and Butlins who sponsored The MADS.  And, if Lyla and Mya ever read this, they will know I lied about where I was going- if I'd said Butlins, they'd have stowed away in the boot of the car- sorry gals, but I've come clean now! And thankyou to Plum Baby who sponsored the award. The prize is a selection from their range and a break at a Luxury Family Hotel- which frankly couldn't have been a more welcome prize!!

Finally, this blog would not have been born if it hadn't been for the persistance of my wonderful friend Amelia Critchlow.  She sat me down with a coffee and a computer one morning last September after we'd dropped the kids off and made me write my first post.

So that's what blog means to me. And you reading it and commenting on it are what makes it worth writing.

x

19 comments:

  1. Congratulations on your well deserved win!
    'I ask not for a lighter burden, but for broader shoulders.'

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  2. Congratulations Rachel, you deserve the win! Glad you enjoyed your day out. We had one of 'those' mornings on Monday with our son, I'm sure you'll now what I mean. Our son wasn't diagnosed until he was 10! He is now 13.

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  3. Just read this as I was flicking through various blogs I heard about at the MADs. I can see why u won 'most inspiring' - it was clearly well deserved. What an interesting insight into an extraordinary year of your life. Thanks for sharing.

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  4. Thanks Althea & Jae :))))

    Sorry you had one of those mornings Serenata :(

    Just watching GMTV with Lorraine about kids that attack their parents, the whole voyeuristic subtext of which is that these parents are obviously BAD parents who have BAD kids

    The psychologist is now pontificating to the mum of an ADHD kid about boundaries (because it's clearly all the parent's fault)...Oh F off!!!

    Lorraine saying 'sometimes you've just got to have some discipline'....oh F off aswell!!

    Pity the poor mum who went on there :)

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  5. Here's the link: http://www.itv.com/lorraine/health/beatenupbya7-year-old/

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  6. Congratulations Rachel well deserved. I find your blog an inspiring read.

    Might I add, on behalf of all at Butlins it was a pleasure to meet the Mads Finalists, you should all feel very proud of the work you do. In our eyes you’re all winners and that is why we are so honoured and proud to of sponsored and hosted the first ever Mad Awards.

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  7. Huge congratulations, Rachel. I'm so happy that it was you who beat me to the award, you thoroughly deserve it. It was wonderful to meet you too x

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  8. Have been reading your blog since finding you on twitter. You have so much more to deal with than me and my asperger boy. But then I have differing challenges being ''almost normal'' and not fitting snugly into any 'SEN' category.

    It's always nice to know someone else feels guilty like me for feeling like a bad parent and thinking they had a very very naughty child. But as soon as you know it all becomes clear.

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  9. Congratulations Rachel! I'm not even sure of the perambulations that brought me to your blog, but this was an interesting read. So glad you had a great day to yourself ~ it sounds like my kind of day! A book of Polaorids (nice!), an afternoon of photography.

    I just put The Horse Boy on my queue...

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  10. Congratulations Rachel! I also have a child with aspergers, but there are many similarities between him and Lyla, so I find this blog both comforting and inspiring :)

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  11. Congratulations on your win, it was great to meet you and look forward to reading all about your break too

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  12. Congratulations Rachel! I didn't give you the blog of substance award for nothing you know ;) It was your warm up for the real deal! I'll say it again, you are an amazing writer, an amazing person, and an amazing mum.

    Well deserved.

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  13. Hunni you so deserved it! And your smile when you won was just fantastic! Well done girl! :D xx

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  14. Many, many, many congratulations! Very well deserved!
    I also feel that I was cheated of Nipper's 'baby' years. He was very difficult and I felt like a useless Mum cos I just couldn't get it right with him. He spent so much time on the naughty step too.Trouble is that no-one has actually told us how we should be managing his behaviour so I'm relying heavily on the internet for guidance. I was constantly told (by health professionals) that he was 'just being a boy', and 'awkward and stubborn'. Now that we know he's on the spectrum it all makes sense and I feel very cross and let down. I really feel that my relationship with him has been damaged and I want my lovely little boy back.

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  15. Congrats, you deserved this one. And every mother needs time out sometime. You deserve that too.

    Hugs,

    Becca x

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  16. Hi Rachel hun,

    firstly CONGRATULATIONS - looking forward to meeting for coffee to catch up on this when all calms down on the bugs front :)

    I think Gemma has said it so well. You deserve this and thanks for raising awareness and sharing what is daily, so very, very hard.

    You do amazingly well. and I am soooo glad we sat down that morning and started blogs. I wouldn't have started mine without you!!! And I have found it a great outlet to focus on things I enjoy in my life inbetween the hard times (2 hours at occupational therapy yesterday whilst my front tyre blew on a dual carriage way on the way there. Carried on driving because I've waited 2 years for this appointment and nearly wasn't here to tell the story!! talk about stress!) but we are here, writing and doing something we love whilst managing spectrum disorders.

    big hugs to you and can't wait to catch up.

    Amelia.x

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  17. Thankyou for such kind comments!- I read these last week as they came in, but was having a bit of shocker after I got back from the awards- and hearing how the blog has helped some of you, especially if you're feeing alone with all this makes me unbelievably pleased and makes it worthwhile carrying on!

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  18. Oh my goodness, you gorgeous and amazing woman!! Well done with knobs on (and well done to the encouragment fairy Critchlow!). SO GOOD SO DESERVED. Getting a bear hug ready for the next time I see you. cxxx

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  19. I'm so sorry - this is SUCH a late congratulations, but it's a heartfelt one nonetheless. I'm so pleased that you won, your blog really does encapsulate everything that an 'inspiring' blog should...and it does it beautifully. My regret is that I wasn't there to meet you and reflect in your moment....another time I hope :)

    Paula x

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