The Amazing Half-Brained Baby blog has been taken over…

by a new baby!

May will be a big sister in July! Congratulations May! You have much to teach a younger sibling about bouncing and giggles.

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This week I’m… drinking from a cup

This isn’t meant to sound like an argument for the “just stimulate them the best you can/there is nothing you can do differently to help your brain-damaged child” camp.

It is, however, meant to sound like an argument for “if you can find something they enjoy, they will figure out how to do it better/faster” camp.

Of course, no one told me this before I invested in 1,000 sippy cups, only to have my daughter routinely laugh in my face and use them as chew toys.

My daughter’s newest seizure medicine (the one she has been taking for the last few months) tastes of blackcurrant. May loves the taste of blackcurrant.

Before this tasty concoction, every time we poured liquid in May’s mouth, half went out the sides and half, perhaps accidentally, hit the back of her mouth to be swallowed. Within days of the blackcurrant medicine infusion, May learned to sip. Now, two months down the line, she slurps from the cup, just like you or I. Bottle to cup, without any sippy step.

When you enjoy something, you want to do it more. You learn to do it better.

In that way, it seems, brain-damaged babies are no different than the rest of us.

 

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Disability cuts will hurt us deeply

Earlier this week, Riven Vincent announced on Mumsnet, an online forum for mothers, that she made the devastating decision to give up her daughter into the care of social services. Social Services would not provide her with more than six hours a week respite, and she desperately needed more.

On The Guardian’s Comment is Free page, I wrote about her plight, one very familiar to me.

In Britain, we are dependent on the goodwill of the State. My local council of Lambeth has to make savings of nearly £80 million over the next three financial years.

Many people wrote into the site lambasting the Conservative-led coalition government or Lambeth or parents like me, for complaining at all.

I wish I had the space in those 600 words to explain the complexities of May’s funding issues. Lambeth has both restored May’s funding, while, with the other hand, they will remove it again in just a couple of months time. Our fight to secure our daughter the services she requires has forced us to contact our MP Tessa Jowell, government officials in Lambeth, along with the media.

We were lucky. Other families in Lambeth, especially those new to the system, may receive no help at all. One of May’s doctors told me last week that she has administrators telling her that “children are not disabled enough” to deserve the money and resources available.

It doesn’t have to be this way. Many people will pass the buck, but in the end, like I said in the article, if May and children like her are not helped now, they will be far more dependent on the State in the future.

You can read about all the highs and lows on this blog if you follow the nursery thread.

Finally – I can’t let it rest that some people reading my post will think May is miserable, while in reality sometimes I find it difficult to feed her – not because she is disabled – but because she is laughing so hard, I can’t get her to shut her mouth.

Here is just one smile in a million, taken only a week back (Thanks Nana!). I can assure you there have been a million since too.

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The Big Move – Part II

Hello? Landlords?

Do you want a nice, young(ish), professional couple with a supremely adorable daughter, to come live in your perfect little house, on a perfect road, just a short walk to the local shops?

Yes?

Then, why haven’t you been calling me? I’ve made myself available. I’ve registered with all the estate agents in my area (that’s realtors for you Americans). But, I’ve had no luck.

Oh wait. I remember now what is going on. It isn’t lack of interest. It is that I have a disabled daughter.

Don’t get me wrong. No one is discriminating against us. But, facts are facts, and there are certain limitations on our lives that didn’t exist when we chose this flat all those years ago.

For one, it’s no longer okay to be four floors up without an elevator. And, furthermore, it is not okay to live in a flat where every room is located on a different floor.

But, the main problem we have is that if we move a five-minute walk away – either East or South – we will lose all May’s current funding and equipment. London is divided into boroughs; ours is Lambeth. Each borough allocates its own funding, its own way.

Although I have often complained about Lambeth on this blog, actually, compared to other boroughs, we have received a lot. I know other families that can’t even get a hand split without paying for it themselves.

We can move to another borough, but in doing so, we are taking the chance that the powers that be in that borough will decide May needs cheaper equipment, or none at all. Or, perhaps, they will believe she doesn’t need one-on-one care at her nursery.

In a recession, in a country where boroughs like Lambeth have seen their  budgets slashed, sometimes by 20% or more, needy children don’t seem so needy anymore.

Because we will not compromise on our daughter’s care, if nothing comes up soon, we will have to compromise on accommodation.

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The Big Move

I sing a song to May – a silly, baby song meant to make her smile when she cries (and works – 98% of the time!). It is a silly song, but at its heart is a truth that is difficult for us.

The song goes as follows (and here I’d like to formally thank Apple for not providing me with a microphone): Oh Baby May… you are so sweeeeet… Oh Baby May… you go tweet-tweet. TWEET-TWEET! Oh Baby May… I love you soooooo… Oh Baby May… Don’t ever grow. DON’T GROW!

When she was really small, I’d sing that last part to her over and over in succession, growing ever softer until I was just whispering, “don’t grow” into her ear while struggling not to cry. On occasion, my husband and I would admit to one another that we wished she would never grow up, since a little baby with special needs is much easier to care for than a grown adult.

I can’t say that my feelings towards the matter have changed. I am more accepting of May’s needs, but of her future? I can contemplate no further than five or six years old.

May will be much younger than five or six before the time comes when lugging a 20 lb baby, up four flights of stairs, will become a near impossibility. We knew this anyway, before May, that a baby would mean moving from our flat into something lower. Something without a balcony looking out over the whole of London. (And, who wants to give up that?)

Oh, but we love our flat. In American terms, it is a pokey little thing. Two bedrooms. one bath and a combined kitchen/living room that is really just a living room with a stove.

But, it’s where we first brought May home. We love it: for its warmth and quirkiness, and for all its memories. And, did I mention the view?

On Friday, my husband was at home since his school doesn’t open again until Monday. He laid in bed, blissfully unaware or, more likely, ignoring completely the doorbell. A minute later, he heard the door to our flat open.

It was our landlord, letting himself in, illegally mind you – since he didn’t ask our permission in advance, but just rambled in confident that we’d never know the difference. Thankfully, my husband was there to stop him. But, the story gets worse as he wasn’t alone. He had a bank evaluator with him.

Our beautiful flat is being valued for sale.

The time has come. It wasn’t a 20 lb baby, or four flights of stairs, or even May’s disability that forced the issue. Like most tenants in the world, as usual, it was our landlord.

 

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