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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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I have some major news to share

Posted on Jun 22, 2015 | 16 comments

I have some major news to share

For the two months, I’ve kept quiet about something. A few of my friends know, and certainly my family does, but the story still seems so outlandish to me that I’ve barely said anything to anyone about it. I’m in remission. Actually, I’m not just in remission. I’ve been in remission before. This is different. To read more click here.  

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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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Update on my plea to NHS England to save my life

Posted on Apr 30, 2015 | 23 comments

Update on my plea to NHS England to save my life

Today, I received the call from my doctor that I’d been waiting for, that all of you – my friends and family especially – have been waiting for: My second transplant has been approved by NHS England. The past six weeks have been some of the darkest days of my life. That so many of you got behind me, including hundreds of total strangers, was completely overwhelming. I am very grateful. But, the truth is the real heroes here are my doctors, who pressed for this treatment despite it being expensive and only given in very rare circumstances. They toiled behind the scenes on my behalf, arguing my case and my life. They started six weeks ago with the initial application and did not give up, even when I felt I was. I worry that a story like mine will take away from the fact that the NHS is one of the greatest health systems in the world. (And that’s not just my personal assessment, Britain’s health care system comes top out of 11 western countries, spending less than any except New Zealand and with the USA at the bottom while spending twice as much.) I fear that people will use my story to illustrate how it doesn’t work, how it deserves less investment, more privitisation. So, I’d like to use this great news of mine to say very clearly: the NHS does work. It is exactly the money wasted in the billions by this Coalition government on reorganisation and privatisation – that got me in this predicament to begin with. The NHS has given me years of life and also saved the life of my severely disabled daughter. While there are clearly problems with a system that would force my doctors to fight for my life and then leave me hanging for six weeks, I cannot fault the care my daughter or I have received. So, I am feeling very grateful today. And cheering! I plan on growing old and wrinkly. I can’t wait for all my hair to turn grey and my liver spots to come out. Bring on old age! Bring on...

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