Posts by Mama Lewis

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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Someone, please tell me what to do now?

Posted on May 11, 2015 | 4 comments

Someone, please tell me what to do now?

Last Thursday, my husband and I skipped off to the polling station with my downstairs neighbours and our children. They played tag between the voting booths and we shushed them and giggled at the same time, delighted to be there and to vote. For weeks leading up the event, I’d been obsessed. I hadn’t just been reading articles in the Guardian, my usual read – but also my political opposites, the Telegraph and even sometimes even the Daily Mail. I wanted to know all sides. And, I hadn’t just read. I was writing myself. My post on the shocking truth behind Samantha Cameron’s Daily Mail article went viral and had over 100,000 hits, crashing my little blog for several hours. I’d also written about what being disabled and on the housing registered looked like (Answer: not good) and posts about finding childcare and the challenges of returning to work when you have a disabled child. I’d even bared my soul and my desperation at NHS England for torturing me for six weeks on whether they would let me live or die – a circumstance brought on by a Tory-led push towards privatisation that was costing the NHS billions of pounds. I wrote all these things and I thought, “Well, some people in the electorate are bound to listen. No one wants these circumstances brought upon themselves or their loved ones.” But, the truth is, people sympathised with my story (and other like mine) but they didn’t relate. They don’t see how these cuts will hurt them or their children because it hasn’t happened to them yet. £12 billion in cuts have to come from somewhere. And it isn’t just going to be the cancer sufferers like me or the disabled children like my daughter – it is going to be everyone, Tory voters included. The campaign was won on a rhetoric of fear. Fear of immigrants. Fear of welfare lairs draining resources. Fear of Europe. Fear of Scotland. I didn’t get any of it. I wouldn’t – being an immigrant myself, who used to be a teacher, but now has to depend on benefits. (And, I really didn’t get the fear of Scotland. Now, we may get exactly what the Daily Mail and the Tories terrified the nation with: the SNP so strong they will be a major voice in Parliament, so strong they can rule themselves and leave.) But I am tired of reading about how selfish or self-serving or greedy Tory voters are. I don’t want to believe that. There is an elite element of the party that is rich and out of touch with the rest of society (one of them is ruling the country now). But, my neighbours and friends and family who voted Tory – and I’m assuming some did – probably did so for obvious reasons. Like that we live in a conservative country. Or, that David Cameron painted himself as compassionate and looked more “presidential” than Ed Miliband. That people like their local Tory MPs – and having met Robert Buckland MP, who led the inquiry into childcare for disabled children, I can see why. That people don’t like change and the Tory campaign made theirs a campaign of fear based on exactly that. No one in the country believes my six-year old, severely disabled daughter should have her benefits taken away. No one in the country wants me to be denied a treatment to save my life so that more money can be spent privatising the NHS. But, this is the circumstance we are all in now. I’m not sure what to do next. I don’t believe social media campaigns work. Yes, they...

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