Preschool

Are disabled children being denied their right to an education?

Posted on Jul 3, 2014 | 7 comments

Are disabled children being denied their right to an education?

May and I appear in The Independent today defending disabled children’s right to early years education. The article takes much from the speech I gave in Parliament, and thus the reason why I didn’t publish the speech earlier. The title of the article is ‘Are disabled children being refused the right to an early years education?‘ — but it could have easily have read ‘Are the mothers of disabled children being refused their basic right to work?’ The issues go hand in hand. Here is the article. You can see it in full on The Independent’s website. Photo by Susannah Ireland. Are disabled children being refused the right to an early years education? Five years ago, I stood in the reception of our local primary. Rated “outstanding” by Ofsted, I hoped they would take my daughter into their attached Sure Start nursery. They not only refused to take her, they refused even to show us around. My daughter was one year old with gorgeous rolls of podge and an infectious laugh. She was also disabled. According to the Department for Work and Pensions, there are 800,000 families in the UK with a disabled child. But research by the Papworth Trust has revealed that only 16 per cent of women with disabled children can return to work – and even then only 3 per cent full-time – compared to 61 per cent of mothers who don’t have disabled children. These children are being refused the right to an early years education and, as a result, their mothers are being denied their basic right to work and provide for their families. When my daughter, May, was born severely disabled I wouldn’t have called myself lucky. I would now. Unlike 84 per cent of women like me, I wasn’t forced out of my job. Five years ago, I wrote about my daughter for The Independent. “May is a delightful baby… she is an absolute pleasure. She remains unaware of the dire predictions for her future. Rather than lie in her cot, totally unresponsive, she took up Olympic-level bouncing and gorgeous squeals of pleasure at the sound of birdsong.” Naively, I thought other people would see her potential, too. In the end, we had the demoralising experience of more than 50 nurseries and childminders refusing to take her. There is no statutory requirement for even state providers of childcare to take disabled children, so they had no issue turning us away. The primary that refused to show us around advertised that they prioritised special needs for admission. I asked for a copy of this admission policy but they admitted there wasn’t one. They made us jump through hoops for months and then, when pressed, told us prioritising May would be “unfair on other parents”. As an “outstanding” school, they made the outrageous claim that May only needed to attend nursery so I could work, not for any developmental benefit. Finally, May was accepted at another nursery. Then, a month before I was meant to return to work, that nursery pretended they hadn’t accepted her. They put her on a waiting list that we later discovered didn’t exist. She was the only one on it and she never came off. I can remember days on the phone sobbing, as I literally begged nurseries to take her so that I wouldn’t lose my job. When I spoke to my local council about it, they treated my return to work as frivolous. In contrast to endless political rhetoric about how mothers should return to work, these Government officials fought us every step of the way. They...

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First day of school (pics!)

Posted on Sep 6, 2012 | 2 comments

First day of school (pics!)

School is back in session. May started school with a big grin. She was very happy to be there, which was a change from the tears that were common at the end of the last school year. Over the summer, I noticed that May needed more naps than Ieuan did – unusual for an older sibling. There is a lot of stimulation at school, so I hope a few extra naps will help. It seemed to do on her first day, at least. May is in the Early Years class AKA Yellow Class. All the students have colors for their class’ name. I like Yellow and all it signifies: bright, cheerful, warm. May’s teacher is the same as last year, and her favorite teaching assistants are back again too. No wonder she was all smiles! Here are some photos....

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I arrived home from the States to find this bombshell in my mail…

Posted on Sep 2, 2012 | 14 comments

I arrived home from the States to find this bombshell in my mail…

Dear Mr and Mrs Lewis, It was decided by [Lambeth] Council’s Cabinet on 16th of January 2012, that two key policy changes were necessary to the Authority’s Home to School travel assistance policy. The aim of this policy is to increase independent travel for young people with statements of special education needs (SEN) to prepare them for adulthood. We will be working to introduce the changes after the October half term 2012. [and now just the part that applies to us] 2. Families where a motability vehicle has been provided for the benefit of the child [or the equivalent in funding – meaning, every child at May’s school] will no longer be offered SEN travel assistance. We realise that for some families this will be a difficult change. However we hope you share our ambition to enable our young people to gain greater independence and life skills. Yours sincerely, M– D— (Not sure if I can include his name and email. If I can, I will come back and insert it for your use.) You read that right. Lambeth Council is stopping all travel assistance for the most needy, vulnerable children in the borough, and it is doing it under the veneer of charitable ambition. In other words, it wants to save money, so Mr Donkor is brazenly lying by saying it for May’s benefit. Three reasons why this is morally corrupt, besides that hideous lie: 1. Unless they will also be providing May with a new brain, she will never gain enough independence to travel by public transportation to her school every day. She can not sit in a seat on a bus. She would just fall over. Not to mention, she is three. 2. While other parents in the UK have to figure out a way to get their child to school (there are no school buses here), those parents have the benefit of resources such as early/late drop-off sessions at school, which May’s school – being a special school – does not provide. They can also leave their child with someone who does local primary drop-offs, but May’s school isn’t one of the common primaries, so no one will want to take May. 3. Why, if they decided this in January – eight months ago, did they only inform parents after school had ended, in August? They should have had the decency to give families more than a couple of months to figure this out. This may mean the difference between some parents working or not. It is no small thing. I emailed a couple of people at May’s school and not one of them had been informed of this. Though I would be surprised if May’s headmistress didn’t have a severe reaction to the news. She is a fireball. I wouldn’t get in her way. Updates to...

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Happy Birthday May! You are THREE!

Posted on Apr 23, 2012 | 9 comments

Happy Birthday May! You are THREE!

Six-months ago, when I wrote my bi-annual birthday review of May, I really despaired. I didn’t say so in the post – these birthday posts are times to reflect on progress and celebrate May’s happiness. But, her list of achievements was not all that distinguishable from the six-months previous. When I composed it, I panicked. Was May’s progress petering off? Would she still progress and develop in a healthy way? Six-months ago, just as I was writing that post, May was about to have a stimulation immersion. This after my very troubling discovery that May had been in receipt of very little therapeutic stimulation for some time. So, it was about six-months ago that all this began: one hour private physio every week a half hour music therapy every week finally saw her OT again after languishing on the waiting list for months acquired a standing frame in school and at home started at her special school in January (morning sessions) moved to a new room at nursery (afternoon sessions) so received a lot of attention and mixed with children of her own age Where previously we had only the added input of the Small Steps School team (and, where would May have been if I hadn’t received their support and guidance?), now she has stimulation coming from every direction. Did her stimulation immersion help her progress? Did it made a difference? In keeping 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 At three years old you can: – sleep through the night! (WOOHOO!) – relax your muscles, particularly your hands – move in far more natural way (less jerky and tense movements) – move your arms and legs independently of one another – twist your torso from side to side – go pee-pee on the potty (if brought to it at specific times and held there by mama) – recognize (by laughing hysterically) when a light changes color and look in its direction – sleep through the night (Double WOOHOO!) – make sipping movements with your mouth when I ask, “Do you want water?” – play an instrument – eat three full meals a day (that’s major – May often couldn’t finish meals) – be unbelievably happy almost all the time for several months straight – fully appreciate our new home entertainment system that is Baby Ieuan – sorry, did I mention SLEEP THROUGH THE NIGHT??? Given enough time, I probably could have come up with ten more things. Happy Birthday to May, my amazing half-brained baby genius! Who knows what incredible feats your third year will...

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Mama Lewis v The So-Called Social Services

Posted on Mar 20, 2012 | 5 comments

Two weeks ago, I had an uncomfortable conversation with a Social Services Occupational Therapist (SSOT). It disturbed me enough to request he not meet me at in my home, which he was meant to review for his records, but at May’s school where her community OT and physio could join us. I’m grateful to them for their support and professionalism, as well as, their familiarity with May, both her needs and preferences. Their confidence meant I could relax and focus on the chair. After all, lost in all the wranglings from our last conversation was whether the chair we were viewing that day was appropriate for her. Also, I felt buoyed, after a visit from our normal social worker, who told me she would speak to the head of his department and to contact her with any further issues. “Don’t you let them bully you,” she said. Before an examination of the chair, I asked the SSOT whether he’d read May’s notes. “Oh, yes,” he said, “of course. As I had done before we spoke on the phone last week.” May’s OT and physio were in the room when I asked, so you make what you will of that lie. As we all discussed the chair we were about to see, the SSOT piped up. “I am considering the Squiggles chair* for May,” he said. Let me repeat something I said earlier: I am grateful for the OT and physio. Imagine they hadn’t been there. I would have been arguing against this chair – one I’d seen the school try out with May every day, because that was the only chair available from storage. I’ve seen her cry in it. Struggle in it. Not eat in eat. Moan and complain in it. But, it wasn’t just me that immediately dismissed his choice as “uncomfortable,” “inappropriate” and “not supportive.” Even so, he wasn’t put off. “I’m considering the chair long-term though. The Squiggles chair could last her four or five years.” This is another example of a so-called expert making a medical decision based on budgetary requirements. It is completely irresponsible. You don’t purchase a complex, therapeutic chair because it lasts the longest. You purchase it because long-term it is the one most likely to help May sit independently, position her hips safely and allow her better postural support. If we are really talking long-term gain – what is more important or cost effective than that? But, here’s the crazy thing, the chair we chose – the Mygo – could possibly last twice as long as the one he wanted. So, he hadn’t even done his research there – in the one part of it he thought was essential. By the end of the visit, he’d decided he’d seen enough. He is recommending the chair. In this, another major trial in exchange for a small victory. *This chair is not inappropriate for all children; it just doesn’t work for May. The Squiggles mat was an essential piece of equipment when May was a...

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