So-called experts

Today I’ll be speaking at Parliament about this…

Posted on Jun 17, 2014 | 6 comments

Today I’ll be speaking at Parliament about this…

Disabled children are almost completely denied child care in Britain. That means their mothers can not return to work. That means they are denied the access to early years education that is a right for every other child in the country. These children cost more; they take more time, more supervision, more training and even changes to the infrastructure of buildings. At this time, the government does not provide extra funding which leaves families like mine scrambling for child care and often needing to quit their jobs as a result. It is a human rights issue that is seriously putting children...

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On the BBC tomorrow… and next week…

Posted on Jun 10, 2014 | 1 comment

On the BBC tomorrow… and next week…

Child care for disabled children needs urgent attention by the British government. Almost 3/4 of mothers have to give up their jobs or move to part-time work after having a disabled child, according to research by the charity Contact a Family. Not only that, but they have uncovered that the fees for children who are accepted are 8x the cost of other children.  May at the time when she started at nursery. Readers of this blog will be familiar with our issues in this area: from an “outstanding” nursery that said they prioritised special needs refusing to take May to a nursery...

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Retrieved from the post office today…

Posted on May 1, 2014 | 0 comments

Retrieved from the post office today…

Retrieved from the post office today: one package too large for the slot in my door addressed to May. A late birthday gift? No. Six nappies. May turned five a week ago. That is one year since she was eligible for free nappies (AKA diapers for my American friends). A year of nappies we have purchased for May, at our expense – and in return, SIX. Children in the UK who cannot be potty trained receive free nappies on the NHS once they turn four. And so, I find myself with six nappies. For the past year, I’ve been begging for… six nappies. I should add the package, which I...

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Again, what’s worse: being born disabled or in Florida?

Posted on Mar 6, 2014 | 0 comments

Again, what’s worse: being born disabled or in Florida?

This week, the Florida government insisted that children with severe disabilities, even those who are dying, be subjected to weeks of standardized testing. I’ve reported on the State of Florida’s shocking treatment of children before. The disregard they show towards the most vulnerable population of their state is truly disturbing and even criminal, going as far as judgement in the federal courts. Remember this? This is the same state that locked away children from birth. Even the pleas of the mother of a three-year old child with Down Syndrome, begging “I want my baby home” fell...

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When there is no answer

Posted on Feb 28, 2014 | 5 comments

When there is no answer

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?” She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing. “How was your...

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