Posts Tagged "cerebral palsy"

Time to share some sunshine…

Posted on Jul 23, 2015 | 6 comments

Time to share some sunshine…

Four months ago, I could barely walk across my kitchen. One month ago, I marched, along with thousands of others, from the Bank of England to Parliament Square. A march of protest against austerity, but for me another protest too: against ill health with the physical proof that I could walk the length of the march. So, did I make it?

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Welcome nursery people!

Posted on Jun 12, 2015 | 0 comments

Welcome nursery people!

Yesterday, I gave a speech at the National Day Nursery Association’s national conference. And yes, when I was dropped off by the taxi in front of this sports arena that I’m assuming seats tens of thousands, I did think, “What the hell am I doing here?” Thankfully, I wasn’t centre-pitch delivering my speech to a rugby ground of thousands, but a sedate conference room of hundreds. For those of you who saw me ramble through my speech and came here to read more about our trials and successes with nursery, I bring you this easily accessible list of previous posts that may interest you: Did they allow your special needs kiddie into nursery? Searching for a nursery – links to all the posts documenting our struggle to get May into nursery We work! (We do if you’d let us) – about how difficult it is for mothers of disabled children to return to work It was an honour to speak to the industry. If we are going to get more disabled children in nurseries, than working directly with nurseries to enable them to provide that service is key. It isn’t easy for them, especially when the government is changing the goal posts all the time and, importantly, the funding. But, it is very possible. Sometimes as easy as applying for charity funding for a ramp so that a wheelchair can access the building. It could be that simple and only needs a bit of imagination and heart, something I know childcare providers already provide in abundance. Finally… direct from parents’ mouths (or keyboards) from my Mama Lewis Facebook page, some positive stories about how nurseries worked with their children: Our nursery were amazing. They really took to my son and all his many disabilities. They were so positive about doing his therapies with him and also allowing him to be a little boy. Messy play being outside, water play and joining in with the other children. The only issue was funding… I loved the nursery staff and was very sad when it came time to go to school! Nursery can be so positive for our children and I think people need to remember they aren’t just tricky to look after/ manage but actually give a lot back too. Just like any other child.   We had a great experience, staff were keen to learn, were diligent about incorporating the necessary exercises, equipment and play therapy into his day, but kept him integrated as much as possible. We initially had difficulties with seating as local authority refused to supply a seat as he was under school age so apparently unnecessary for him to be at nursery (my mortgage provider would beg to differ!). We ended up funding a seat through a charity and it made a huge difference to his ability to integrate (ie he could now sit with the other children for lunch instead go being stuck in a highchair), plus being properly supported meant he could focus on his hand use etc. The nursery were great with storing & using equipment – at one stage he had 2 walkers! I completely credit the nursery for his starting mainstream school last September – we would never have had the space, time, and energy that he needed, and with anASD diagnosis on top, the structured routine. Being around the other children boosted his social and communication skills too. We weren’t charged any extra but the nursery did get 1-1 funding eventually from the LA. He went from 14 months up to school age, at 14 months couldn’t sit, talk, feed himself etc, by the time he...

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The joy of parenting a special needs child caught on video

Posted on May 30, 2015 | 4 comments

The joy of parenting a special needs child caught on video

I almost didn’t use the phrase “Parenting a special needs child” in the title of this post. Don’t get me wrong. I have no objection to the term “special needs child”. I live in reality. I call it like it is. But, sometimes there is no special needs in the equation. Sometimes, like this video shows, children are just children. They have temper tantrums. They get sick. And hell yes, they shriek with joy and giggles sometimes. When May shrieks with joy and giggles, as her mama, I don’t blink back bittersweet tears and think: “Ah, bless. She is so disabled and yet so happy. Isn’t she sweet despite everything?” No. I struggle to hold the camera straight because I am bending over with belly laughs myself. This is what parenting a special needs child is like. This is what parenting any child is like. Ignore the rough patches for the moment. May is a little girl. She likes to sing and dance with her father just like every other little girl in the world does. I get a lot of letters from parents with babies just diagnosed or still in the hospital. This is for you guys. This can be your “normal”...

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And finally… some good news!

Posted on Apr 8, 2015 | 10 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 don’t get it (five families are on every shortlist), it means that we can be shortlisted and, eventually, housed somewhere appropriate for us. And just to get in the spirit of things, here are some photos of my family this weekend at the Wetlands Centre in Llanelli enjoying some Easter weekend sunshine. Thanks everyone for your support – we genuinely would not be in this position if so many of you were not outraged on our...

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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 made it in, but it did make one thing clear to me: we need better housing and people like us do as well. So, I’d ask you to take a look at the Leonard Cheshire Disability’s Home Truths report. They were the impetus to all of this happening and I’m grateful that they gave us the opportunity to share our story and change our lives. Because we are prioritised for housing now and it is only a matter of time – and not an impossibility – that something appropriate will come up. Here’s the video:...

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