Friday, 20 November 2009

How it is

Not easy

Three days ago I received a characteristically upbeat email from conductor Ágnes Pálinkás:

A quick note from London:

Saturday November 14th, in the Guardian (page 4), there was whole-page photo and a full-page article about a young family with their daughter May.

The little girl's mum has a blog: www.mamalewis.wordpress.com

They have joined 'Small Step School for Parents' that shares a building with Greenmead School [where Ági works]...
Anyhow, [the school] received the following letter on November 13th. I don't know if you want to use it or not, but it is always nice to read letters like this.

This is what May's mother, Stacie, had written.

Dear Small Steps,

Please, please,please let my daughter join your amazing, special school.

Our Tiny Step session yesterday was awesome. I loved the atmosphere of your school – how demanding you were of the children (and I mean that in the most positive ways) while at the same time how much fun May had. She smiled and laughed her way through activities
and stretches that, at home, I struggle to get her to do at all.

Your approach, that every single action of play should improve the physical and cognitive abilities of the children, is wonderful. I understand now why spaces is your school are in such demand.

Please, please, please. Look, I'm begging. I have no shame.

Thank you,

Mama Lewis

That's what it's all about and, as usual, it is a parent who puts it best.

Not how it should be

When I received Agi's email, and Stacie's subsequent permission to quote from it, I intended to write a very short article called 'How it should be'. Just for a while, I wotld have written, perhaps, after the terrible storms of the first couple of years that society can serve up to parents who have a baby with cerebral palsy, a family felt itself safe in a calm harbour, able to focus on enjoying bringing up their little daughter. Given the awful established structures of our society (hardly unique to the UK!), that's about the best that a family can exerience of CE in the great majority of instances, a revivifying respite before battling their way again through the storms.

Time marches on so quickly in a little life. I had first heard about this from Ági on Tuesday 17 November. I asked her to get the family's permission for me to write about them, and she replied to me this lunchtime, Friday, to tell me that this permission has been given.

I have just sat down to write this article, pleased to be reporting something cheering, a reminder of what Conductive Education is all about, why parents struggle to achieve it, what it does for everyone involved.

So I hunted back on line through the Guardian newspaper, and found Stacie Lewis's article from last Saturday, that Ági had mentioned., So far, so good.

Then I looked up Stacie's blog. This week has seen one of the usual small, invigorating victories and one of the screaming frustrations with 'services' so familiar to many readers of Conductive World, wherever they are.

Then this morning's posting:

Small Steps contacted me to say that they don’t have a place for May...

Until I received the email, I don’t think I realized how much I’d pinned my hopes on a place.

Sometimes May’s care, regardless of the professionalism of the experts, seems so haphazard. I see someone one week and then not again for three or four weeks. I do everything they ask, but do I do it effectively, long enough, frequently enough, in the correct alignment?

I never know. I can’t know. How can I keep track of everything? It is a lot of pressure to feel that I am by far the greatest influence over whether my daughter maximizes her potential.

Once a week, to surround myself with other mothers like myself, in that kind of instructive setting, would have done me as much good as May.

What can you say, what can you do? I had hoped that May's story would exemplify how it things should be, not how they so often are.

Try Dina

All that I can think to say that is practical is that Stacie should get herself a copy of Dina, read it, and form her own views on what it suggests for mother and baby at home. Then take advantage of the local presence of Ági and, I believe, two conductors at Tiny Steps, to ride shotgun on her establishing conductive upbringing in the place where it really matters, in the family

It is a quirky little book but it is surely more use that the daft 'government guidelines' that Stacie reported on in her blog yesterday. Such a pity that Dina and the approach that it advocates are not much more widely promulgated by conductors and others around the world.

The book is not exactly a safe harbour, but at least something that many parents have found to be something to navigate by, and therefore a source of strength over the years.

Notes and references

One Small Step School for Parents
http://www.give-it-away.co.uk/small_steps.htm

Lewis, S. (2009) 'If she can do this, I can', Guardian, 14 November
http://www.guardian.co.uk/lifeandstyle/2009/nov/14/brain-damage-baby-birth

Lewis, M. (2009) A waste of good trees, Mama Lewis, and the amazing adventured of the half-brained baby, 18 November

Lewis, M. (2009) Small Steps School for Parents (update), Mama Lewis, and the amazing adventured of the half-brained baby, 19 November
http://mamalewis.wordpress.com/2009/11/19/small-steps-school-for-parents-update/

2 comments:

  1. Being the subject of this entry, I wanted to update readers that May started Small Steps very shortly after this was written.

    We are grateful that May has a place there and that we have the opportunity to experience first hand what a difference the school can make, not just to us, but to the other families that started when we did.

    ReplyDelete
  2. I am very pleased that you got on board and that it is making a difference for you.

    Good luck for the future...

    Andrew Sutton.

    ReplyDelete