So-called experts

What’s happening to May’s hips?

Posted on Nov 11, 2014 | 2 comments

What’s happening to May’s hips?

A year and a half ago, May had a major hip operation. She recovered well. There were some lingering issues — like she still crosses her legs and you can see one of the metal pieces holding her hip bone in place under her skin. Not nice and not ideal, but much better than the pain she had been in. Why did she need surgery at three years old? You probably shouldn’t read this if you are squeamish. In recent months, May has not been doing as well. At the time of her dental surgery, we suspected her pain wasn’t entirely in her mouth and that theory has been proven right. She can...

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What you don’t know about my husband

Posted on Oct 13, 2014 | 3 comments

What you don’t know about my husband

I am the face of this blog. As such, people often tell me how much they admire my dedication to May. What people don’t realize is that my husband deserves much of the credit. My husband is May’s main caregiver. Her bather. Her chef. Her afternoon sleeping companion. She’s watched a full Tour de France. Twice. All because she spends so much time with him. “This is the song that proved May has better taste in music than you, Stacie,” is a typical aside in our conversation. And May does genuinely has a more eclectic taste in music than I do. Why? Because she spends...

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A toothy tale of incompetence and negligence

Posted on Sep 9, 2014 | 6 comments

A toothy tale of incompetence and negligence

May was just wheeled into surgery. I’m sat amongst the other parents awaiting our children’s fate. I’ve said it before, but praise be all parents who pack a bag for their child to take them – not on holiday – but to the hospital where someone will drug them and cut them open with a knife.  

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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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