Posts Tagged "disability"

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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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 government has continually put the boot in to the vulnerable, particularly my fellow people with disabilities, while spinning it to look like the very thing that will save Britain’s economy for ‘hard working families.'” I can’t help but agree with Tania. Since the Coalition government came to power, their legislation has directly hit our family, the same “hard working family” with two teachers in it, that the Tories pretend to support: – Our local council significantly cut special needs transportation to school – The respite holiday care for all the children in May’s school is under threat – The Speech and Language Therapy team – the same one that taught May to eat – was dismantled – Equipment we used to receive, like sleep systems or communication equipment, is no provided. – Local council’s budgets have been cut by 40% destroying an efficient and effective team assisting our family – There has been only one disabled homes in our area we have been shortlisted to live in and that is only the tip of a disabled housing crisis across the country. – Disabled children are being refused access to early years education – their legislative right. – Money for disabled children is not ring-fenced so cash-strapped councils spend it elsewhere. Where is the shock and anger? How about at the ballot box? You only have 24-hours left to register. It is simple, online and will take five minutes....

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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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