Life with a CP Baby

Happy Birthday May – You are six!

Posted on Apr 23, 2015 | 7 comments

Happy Birthday May – You are six!

Like the title to a Winnie the Pooh book, my little half-brained baby is now a 6-year old half-brained beauty. And let’s all take a minute to pause there. SHE IS SIX. That’s nuts. I feel old. But, you know what? With everything going on the last few years, I don’t mind feeling old or the idea of growing old, especially with such a cutie by my side. And how incredible it is that, not only are we dealing with having a child this brain damaged but we enjoy her, our lives and our future. Having said that, here is the thing… May hasn’t actually made a lot of progress...

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24 hours left to register. Don’t think your vote will count? Think again.

Posted on Apr 19, 2015 | 0 comments

24 hours left to register. Don’t think your vote will count? Think again.

There are only 24 hours left to register in Britain to vote in the General Election. Don’t think your vote will count? Think again. As Tania Tirraoro of Special Needs Jungle points out there are 12 million votes out there, ready to be cast, if disabled people register and vote. According to BBC Ouch, that’s 20% of the voting age population. Tania, who is both a parent to a child with special needs and disabled herself, says: “It’s not just my own health condition that depresses me. Looking up from my own self-pity brings me face to face with the way the Coalition...

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Why the Tory “right to buy” plan is just wrong

Posted on Apr 15, 2015 | 4 comments

Why the Tory “right to buy” plan is just wrong

I’ve been conversing with a mum this week. A mum like me, who is also desperate for a home that doesn’t endanger her severely disabled daughter with every step she carries her down a staircase. I read about her plight earlier in the week. Leanne Mhamdi lives in Grangetown with her husband, son and daughter, Nicole. Nicole has epilepsy. Like my daughter, May, she also has profound learning difficulties and cerebral palsy. She is tube-fed and relies on their care 24 hours a day. The day after I read her story – the Tory party announced with great fanfare their new flagship...

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And finally… some good news!

Posted on Apr 8, 2015 | 8 comments

And finally… some good news!

Several weeks ago, I published a post entitled: This is what being disabled and on the housing register looks like. I began: A mother with leukaemia. A five-year old daughter so disabled she can’t even throw an arm around the shoulders of someone carrying her up the stairs to her flat. Over two years on the housing register and no chance of even being shortlisted for a property. This is the reality of being disabled and living in housing completely inadequate for your needs. That was five weeks ago. This week we were shortlisted for a property! We are thrilled because, even if we...

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The video that changed everything

Posted on Mar 12, 2015 | 8 comments

The video that changed everything

Last week, ITV filmed May and I in our housing showing the reality of disabled housing. As we filmed, the reality of our lives wasn’t just highlighted in the piece, but starkly apparent to me. Only an hour later – before it even aired – we received our first contact from Lambeth council. I had to carry May up the stairs; we have four flights at various points in the house, inside and out. In the clip below, you can hear me puffing as I heave her up those stairs. They asked me hard questions, emotional questions that cut to the heart of what our lives are like. Not all of it...

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