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Archive for December, 2010

the gift of sitting without support!

Normally, I would go into a long explanation of what led to sitting. But, in honor of the Christmas spirit, I will explain it off as a miracle of Christmas! (and stronger arms, better balance – from better vision, a year of stretching, one Supergirl Suit, an amazing nursery, devoted team, not to mention encouragement from Daddy and Mama!)

Without a doubt, this is the best Christmas gift May could have given us.

Children are astounding and, excuse my bias here, children like May even more so. If you are a parent new to this business, still reeling from a diagnosis or visiting your baby in the Special Care ward this holiday season – take heart!

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After all my bluster, which isn’t too surprising considering the history of such things in our lives, it turns out the review was just a formality. The funding has passed and May will have it until it ends in March, as originally told.

Also, contrary to what I initially heard, the nursery was informed of this December review date, so I can’t blame that on Lambeth. May’s team was told the funding would end in March, which is still true; with March on their minds, I think everyone assumed there wasn’t a review in between.

Unfortunately, in this whole situation, we, May’s parents, are kept as outsiders. We never saw the paperwork that said the end date was in December until this week; nor, were we at, or could we influence the outcome of the review. When you have a disabled child, you relinquish some of your parental responsibilities to other people.

I can’t say what I would prefer: to be more involved in the administrative mess that May is so dependent on, or less.

In this case, we can all breathe a sigh of relief. The funding is there. Another unnecessary emotional trauma is over.

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I can not convey the deep and long intake of  breath, the frustration that twists my stomach into knots, the agonizing fear every time something like this happens – fear that my daughter’s safety will be compromised by the negligence of one administrator. An administrator who has no contact with my daughter; who has no concern or understanding or interest in her well-being; who is just doing a job and not doing it very well and probably isn’t all that concerned about that.

The same woman who so disastrously handled my daughter’s case previously, contacted May’s nursery on Thursday to inform them that May’s one-on-one funding will be expiring this Tuesday.

Tuesday they will hold a review about the expiry. Perhaps that sounds like a ray of hope to some readers. What will you think after the following?

Until Thursday, we were all told it would be ending in March. Until Thursday, we didn’t know that the original date for the review was actually two weeks ago but had been rescheduled due to the snow conditions. Until Thursday, the nursery wasn’t informed of the paperwork about May’s care that needed to be filled out since September; four months of paperwork to be in their hands by Tuesday.

I will only say this. May is never the problem. Her condition is never the problem.

Administrators are the problem.

Updates to follow…

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Audience laughing at "disabled child as rapist" joke

Maybe that sounded like a rhetorical question.

If you are a fan of Frankie Boyle, or had the unfortunate accident of seeing his new television show, laughing at May is part of the entertainment.

I say “laughing at May” but Boyle performs jokes at her expense and the expense of all disabled children. He gets to the heart of what is so funny about a sweet, adorable child like May – namely that she is a waste of space. Or, worse, as he described Katie Price’s disabled son, Harvey, a rapist.

I don’t struggle with the idea that Freedom of Speech should be restricted. Frankie Boyle can say what he likes (and, here, Paul Saxton of Maggie and Alice says it much more eloquently than I).

What disturbs me more is that the audience laughed at the joke. People feel it is okay to laugh at the idea that a disabled child is a rapist.

Less than two years ago, after May’s brain-damage was discovered, I thought our struggle would be her. Not so. Never so. She is the easy part.

I struggle with limits of people’s integrity. I find it demoralizing that so many people I encounter with May – nursery managers, flight attendants, budget administrators (all of whom you can read about on this blog) – are unsympathetic, dismissive and, sometimes, even cruel.

May is more capable, at her age and with her brain, of understanding the roots of joy and pleasure, as well as pain and frustration, than Frankie Boyle’s audience of adults. Let him say what he will. But, when he does so, stand up and chuck your pint in his face.  At the very least, stand up and walk out.

Originally, I thought Boyle was relying on his limited audience’s base loathing of glamour model Katie Price, that she was the joke and her son just the means to achieve it. But, Boyle has a longer history of slating the most vulnerable children in society.

In April of this year, a mother posted a blog (no longer available) of her experience seeing one of Frankie Boyle’s shows. In it, he made fun of children with Down’s Syndrome, especially disturbing to her, as her son has the condition. According to The Telegraph, “Mrs Smith’s husband, Kieron, said he was stunned by Boyle’s jokes. “He frequently used words like ‘Mongoloid’. He did impressions of the way people with Down’s syndrome talk. One of his jokes was, ‘Why is it that everyone with Down’s syndrome has bowl haircuts and bad clothes?’ He came back three times to the idea that people with Down’s syndrome die early.

Here is the BBC’s account of the event:

Mrs Smith said that during the whole segment her heart was racing and she wanted to cry but that most of the audience were laughing as far as she was aware.

She said Boyle noticed her talking to her husband and asked them what they were saying.

She wrote on her blog: “I told him that my five-year-old daughter has Downs syndrome and that I was simply upset at some of his jokes.

“He tried to laugh it off – ‘Ah, but it’s all true isn’t it? Everything I have said is true isn’t it?’ To which I replied ‘No, it wasn’t’.

Boyle didn’t learn his lesson then, and he won’t learn it now. His publicist is probably wringing his hands and drooling over all this free copy. I even questioned whether I should give him this tiny bit more.

But, I won’t have anyone laughing at my baby.

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