So, David Cameron, your cuts won’t hurt disabled children?

Well, what of their families then? Cuts to local councils make our lives ever more challenging. Here is a simple story to help illustrate this. One, I think, even Tory ministers can understand. Several months ago, we applied for a disabled parking spot to be placed outside our flat. Our road is one of the [...]

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Why do so few people care about May’s visual development?

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.) There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers [...]

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Help! What do you know about physio?

May has a physiotherapist. She is a member of May’s community team, so we don’t pay any additional money for her and she works alongside everyone else who works with May. She is professional and organized and I should feel like she is enough, but I don’t. She isn’t just May’s physio. She is also [...]

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The Seizure Diet

Early after May’s release from the hospital, it became clear that for the doctors, May’s seizures were their biggest concern. Like the rest of her injuries, the cause of her seizures perplexed them. One by one, May trialled numerous seizure medications, seven so far; currently May takes four. The most recent addition, Lamotrigine, May began [...]

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PODD (not a film about alien spacecraft)

Pragmatic Organisation Dynamic Display (PODD): the clumsiest mouthful of words meant to be a communication system, or a revolutionary system of communication for the speech impaired? Among the debates eternally raging in my mind, the one whereby I choose to adopt or rubbish a new therapy has to be the most challenging. Every week, I [...]

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Severe

May is “severely visually impaired”. She has “severe brain damage”. Referring to May using medical terminology is always depressing, but more so when it is a medical term that is also used widely. “Severe” is as term I come across a lot in May’s medical reports. It is a term used casually and freely. It [...]

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MRI results

Result: Not much change. May’s brain is developing as expected, meaning much of her brain isn’t developing as the tissue is dead from the previous injury. Though there is damage throughout the brain, the basal ganglia (part of the brain associated with movement and learning – thank you Wikipedia) is less effected than the other [...]

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Small Steps Stocking Stuffer

May received an early Hannukah/Christmas gift this year (yes, we are a dual-religion household in addition to dual-citizenship). It’s official – May starts classes at Small Steps School for Parents in January! If you are shopping for some stocking stuffers of your own, and use shops like Amazon, Ebay, M&S and Mothercare, why not help May’s [...]

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A bit of praise

It is easy to get bogged down in the negative when dealing with a disabled child. Certainly, it always seems like the things that frustrate me make the blog while the rest falls to the wayside. Because of this, I hope I point out, and here I will, people throughout who really come through for [...]

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CP Web World

Two readers wrote into me recently to share their own web sites dedicated to their children, sharing the struggles and joys. That any of us find the time to use a computer, let alone shower is a miracle. Please check out their sites! http://www.pixelpaper.org.uk/ This web site means to link up families, much in the [...]

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