Yesterday went to launch the sports day for the Hornsey Trust for Children with Cerebral Palsy. This is one of the only places in the whole of London where from the age of six months parents can take their child to a conductive education school. This is the method that started in the Petto Institute – at the time highly controversial, but which delivers results.
And you know – can you imagine what it is like? You give birth – with all the hope in your heart that nothing is wrong – and then you are told that your child has cerebral palsy. A new world that you never wanted to take part in lies in front of you. What does it mean? Where can I get help? What will my child be capable of? So many questions and so many battles ahead.
When you become the parent of a child with disabilities – you will spend so much of your time researching and fighting to get what your child needs. Of course – it should be there – but it it often isn’t.
Many parents come to me because they cannot get Haringey (or whatever local authority) to fund their child’s education or care. And when the policy is mainstreaming – there is a great resistance to special facilities.
That is now beginning to change – as the consequences of the policy have become clear – that in some cases mainstreaming is appropriate; in some cases it isn’t and in some cases half the week in each is the best solution.
Anyway – back to sports day. Three groups of children up to the age of seven with about six or seven children in each group were doing races. The first group were mobile with a variety of help – of walking frames or without – and they went around a simple obstacle course. The conductive method seems to work off intense one to one encouragement and help to urge the child to take the next move. It is a kind of patterning – but I am no expert. At the finish lines, siblings, parents and relatives rejoice – and the little ones faces full of beams. The point is that they have achieved!
The next group less mobile – but in a short distance to a finishing tape – they crawled using their elbows or whatever – each with a helper urging them on each and every step. And the last group even less mobile – literally encouraged to roll to the finish line.
It is intense and it must be exhausting for the trainers – but the children from all the groups absolutely loved it. And the effort and the love in that room meant that tears rolled down my face continually. Don’t get me wrong – no-one else cried – they were all happy. But I cried because the achievement was huge and the road so hard and the bravery and the love so strong.
And I spoke to quite a few of the parents – and the struggle they have had to get the funding to have their child here rather than where their local authority wanted the child to go. For parents here – they have seen what this method can achieve. The normal method puts them in a wheelchair and the parents feel condemns them to a very limited life. I met one parent of a girl who had not been able to walk – now she walks. For some the improvements are small by ‘normal’ standards – but they are all about improving quality of life and maximising what each child can do – and as a parent that is what you want.
It isn’t just cerebral palsy. Readers of my blog will see only a week or so ago I visited the mother of a young girl who couldn’t get a power wheelchair from Haringey who seem to operate a one chair fits all policy.
And there are many others – but I don’t want to post here as they are private matters brought to me – but they are on the same line. The parent fights and the authorities (whether medical, council or other) all seem to make the already horrendously difficult road more difficult, more bleak and more hopeless.
Three cheers for all the parents at Hornsey Trust and all the children – and the wonderful staff!
Then it was Highgate Fair – happily the horrible rain and drizzle of the morning has dried up for this Highgate celebration. Lots of stalls and people and children all milling around and seeing what’s to eat, what’s to buy and what’s to join. My Lib Dem councillor colleagues – Neil Williams, Rachel Alison and Bob Hare have a stall too. The big event for me here is the launch of the Highgate Shopping Bag! I purchase one immediately. My only problem now is that I have the Crouch End Shopping Bag and the Highgate Shopping bag (and I have a designer given to me by my daughter last Christmas) and Marks bags that you buy to shop there. So two things – is it de trop to use the wrong bag in the wrong area? (Jokes!) And come on Muswell Hill – you can’t be left behind! Join in and soon!