Archive for April, 2010

So, here we are at Part 13 and 3/4 – my tribute to Adrian Mole.

Let’s be honest. The nursery thread of this blog is as juvenile.

I sent a letter to the Head and Deputy Head (that’s Principal and Asst Principal to any Americans) of the nursery that refused to prioritize May. Despite having no interest in sending May there, I still intend to see it through so they cannot treat another family like this.

Here are the choicest bits:

I’m not sure if you can comprehend how demoralising it is to learn, so early in May’s life, that an educational institution would tell us that prioritising us would be “unfair on other parents”. I never thought I’d be in a situation where someone would imply that May’s disability could ever put us at an advantage.

I do understand how popular ***  is and I have no objection to there being no availability for my daughter by the time we needed one. However, I do object to a nursery, under the jurisdiction of the borough and one that advertises as its aim that they wish to provide places for families with special needs, being allowed to continue to discriminate against families like ours.

My family’s situation is a very difficult one. I certainly do not want to force anyone to work with my daughter. Her progress is too important to insist ***  works with her if you don’t wish to. And, after this experience, I’d be very reluctant to send her to ***. Forcing a family like ours to jump through so many hoops, when you are aware of the difficult and restrictive circumstances we are working under is shameful.

That was Monday. On Thursday, the manager called. She said, as part of her ongoing investigation into whether May could be prioritized, she needed to know where May currently attends nursery. When I asked if this was in response to my letter, she claimed to never have heard of the letter and that her call, the first I have ever received from the nursery after six months, was entirely to ask me that question.


Incidentally, not all nurseries are like this. Dulwich Day Nursery, where May now attends, is outstanding.

Every other nursery was reluctant to take on May. Dulwich Day never was. Not a bit. There is no doubt they adore her. Each member of staff, from the manager to the cook, concerns themselves with May’s care. When I pick May up, her key worker falls over herself to tell me about every little bit of progress May made that day, no matter how small. They don’t just appreciate how special it is to educate and look after a child like May, they enjoy it as well.

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May and I are in The Independent today!

May is such a cutie! (c) Richard Mildenhall

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The Politics of Inclusion

I don’t usually write about politics on this site, I’m too busy talking up my amazing daughter.

But, here in Britain, we are in the lead up to a General Election. Whichever party is elected, will make a big difference to the kind of services on offer to my daughter. Each of the parties is talking about major cuts across public services and, while they fear a public revolt if they cut funding for the National Health Service (NHS) or to schools, smaller projects like the ones we benefit from are fair game.

I worry about May accessing all her therapists as frequently as she needs, or her nursery receiving the funding to buy a special chair so they can accommodate her. There are so many ways this could affect us, I don’t know where to begin.

It didn’t occur to me until last night, when I saw parent Jonathan Bartley argue with David Cameron, Leader of the Conservatives, that inclusion in education might be an issue, as well as those projects I listed above.

Jonathan Bartley’s family spent years and thousands of pounds, to force their local primary school to accept their son. If you think I had problems getting a nursery to take May, his story is far worse. He was a school governor, attended the attached church with his family, two of whom were already students at the school.

Unfortunately, his story is especially applicable to our family as he lives just up the road from us, in the same Local Education Authority.

You can read his story in full in The Telegraph. Or, listen to him here on Radio 2 with Jeremy Vine.

I’m not sure what kind of schooling I want for May, but I know I want what every other parent wants: for her to be pushed to achieve, as well as, warmly cared for. What I don’t want is someone else deciding for us which type – mainstream or a special school – would be best.

The arguments for not including – that you hurt the many to help the few – seem very shallow to me these days. When you work every day with a severely disabled child and see for yourself her amazing progress despite her injuries, it seems inconceivable that her taking part would be negative in any way. These parents that huff and puff about how it disadvantages their child, are severely limited themselves – in scope, imagination and a terrible superiority complex.

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Happy Birthday to May!

Photos of the celebrations from the past weekend below.

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May gave my husband and I a lovely present this week in honor of her birthday. New sounds!

I’ve been repeating sounds to May, but have had very little success getting her to repeat them to me. I say little, but in fact I do think that on a few occasions she tried to repeat them back to me. It is very hard to tell.

But, the good news is that in the last couple of days May started making “bah” and “woo” sounds. We are especially excited about the “bah” as she has to press her lips together to make it, which is a new way of making sounds for her. Also, she seems to be making more sounds and repeating her own sounds. For example, instead of only making a “goo” sound at the end of “ah-goo”, she now also says, “g-g-ga.”

Is this my work with her? Perhaps a result of being in nursery surrounded by all those people?  Or, maybe just a natural progression?

Like everything else to do with her development, I’ll never know. But, I like it!

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The video below, of May’s first 1st birthday party in Michigan, was shot by the famous cinematographer, my mother! It is a bit fuzzy as it is from her phone. Photos from this weekend’s birthday party to follow.

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And baby, look at you now!

Here is what May could do when she was born and it was all her doctors could assure us she would ever be able to do:

– pee

– breath

Continuing with the updates about May’s amazing accomplishments, here is what May can do now:

– bounce

– bounce, bounce, bounce!

– sit with support

– laugh hysterically to herself, over funny stuff she creates in her head

– control her parents

– reach (ever so slowly) to play with her monkey toy

– pretend she is upset and then giggle when she gets her way

– block yucky food from her mouth with karate chopping skills

– make a mess (yeah!)

– lean into her arms and hands to support her weight

– play the keyboard with her feet by kick kick kicking

– recognize her mom and dad’s voices

– recognize the sound of her door creaking open in the morning – “Yeah! Time for bouncing!”

Happy Birthday May! We love you!

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Some of you may have noticed that I removed an earlier post about a complaint to my MP. I removed it because I haven’t sent it yet and it seemed unfair to publish it into the blogosphere without her reading it first.

It will reappear…

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A year ago today…

…my waters broke. I woke up at 5 am. I dribbled all the way to the bathroom. There, I sat on the toilet and cried, and then, took a deep breath, got myself together and called first the midwife’s pager and then my mother.

When the midwife arrived, she said some women choose to labor at home for up to four days after their waters break if they don’t start contractions. That didn’t sound like a good idea to me.

Little did I know that it would be 65-hours later before I gave birth. Two weeks for me in the hospital. Six-weeks in Special Care for my little May. My word.

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