Life with a CP Baby

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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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 over the past year. She’s just gotten better at what she does. As with previous birthday posts, let the celebrations begin! May, when you were born, here is what the doctors definitely knew you would be able to do: – pee – breathe Now at SIX years old you can: – Play independently for up to 40 minutes. – Smash that button of yours to play your daddy singing, or other interactive toys like it. Your favourite is still that Monkey Toy though. (We bought three this year just in case one broke.) – Eat more food and drink less supplement milks. And you really like Mama’s soups. Yum! – Because of this you’ve put on weight and finally moved up from that dreaded .04% into the 2% on the weight charts for your age. That’s major. – You love ‘Room on the Broom’ along with other stories. Bedtime stories are still your favourite. – You keep winning “stars” at school because you are so enthusiastic during swimming and movement classes. – You are happy and recovered quickly from your surgeries this year. Thank you NHS. – You love to sing along with us to your favourite songs. We think you even try to communicate sometimes. May, we are listening. And it wouldn’t be a birthday without a video. Here is May and I riding a bike earlier this year, enjoying the sun and the wind in our hair. Happy Birthday May. Here’s to many more days like this...

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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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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 policy to extend the right-to-buy scheme to housing association tenants. Right-to-buy gives tenants the right to buy their home at a reduced rate. Introduced by Thatcher’s government, the Tory’s now want to extend it out further: a discount on buying a housing association property that will be capped at just over £102,700 in London and £77,000 for the rest of England. From the Guardian, “The proposed discount will be worth 35% for a house after a housing association tenant has been in the house for three years with the value of the discount rising 1% for every extra year the tenant has rented in the public sector. In the case of a flat, the discount will be worth 50% after the first three years, rising by 2% each year afterwards.” What social housing tenant wouldn’t be tempted by that? How about the thousands upon thousands of tenants that can’t afford that mortgage even with the discount? Or, the thousands who don’t live in social housing at all so wouldn’t qualify and can’t afford to buy their own home? But, let’s just say they all could and the money would be plowed back into new housing, as the Tories claim. Families like Leanne’s and mine are desperate for homes. The private sector doesn’t offer anything – or barely anything – suitable for disabled people. The Tories say their plan will create “a £1bn brownfield regeneration fund that will produce 400,000 new houses over five years.” But, some simple maths (£1,000,000,000/400,000) means only £2,500 will be spent on each home. If the Tories could pull that off, it would be a mathematical miracle. The last time you could buy a home for £2,500 was 1960. £2,530 to be exact. I contacted Leanne who has fought tooth and nail to get be prioritised on her local council’s housing list. She remains in Band B despite the face that her daughter, who is 10 years-old, is much older than May and also bigger. Leanne and her husband sleep downstairs on the sofa to be with her. “I used to put her with me in my bed if she was having more fits than normal. I can’t even do that now because she’s too heavy to carry upstairs. Even if I did, I would never forgive myself if I dropped her,” she said in the article. To me, Leanne admitted she worries she’ll have to give Nicole up to care. “If they can’t do it then I’m stuck in this house and I’m just gonna have to give up my daughter… I can’t cope living in the house caring for her.” It is a fear I’m familiar with. She told me, “I feel like I’m coming to a nervous breakdown… I can’t afford to be ill.” She gave up work to be Nicole’s full-time carer.  Even a conservative paper like the Telegraph thinks this plan is lunacy. Why would we spend a billion pounds subsidising the selling off of valuable social housing stock, only to come up short in the end? Let’s please keep the social housing stock we have and spend far less creating new, accessible houses...

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