Monday, 24 November 2008

What to do between 'blocks'

Personal and policy suggestions required

The following cri de coeur was published last week, on Jacolyn Liek's blog Liek Triplets. Jacolyn describes herself as a 'barely sane mother of triplets'.

Wednesday, November 19, 2008

and 2 steps back. Sometimes it feels like 3 steps back and that we are starting all over. Grace finished her September Conductive Education doing really well. Sitting up well, walking well, great attitude. Now she is afraid to sit up, she is complaining about her right leg and has become most difficult at times to get along with (especially with me). I was feeling so great about things in September. We had the right therapists, the right equipment and things were really, really moving forward. And now I fell like I just can't do it all! Is this the way it is with CP? I guess I thought things would always continue to get better. I guess I really don't know what I'm doing or what to expect from this journey. I guess I feel like I'm letting everyone...especially Grace...down.

Posted by Jacolyn at 5:06 PM 8 comments Links to this post

Eight Comments have been posted in response to that, including this one...

Billie said...

This has TOTALLY been our experience and we're kinda in a slump right now too...right at a time when I had been feeling like everything was going so well!Try to keep in mind, that when you take 3 steps forward, and only two back, you're still ONE STEP AHEAD!I also frequently remind myself that "this too shall pass."Keep your chin up:)Billie

None from a conductor, nor from anyone who knows something positive to do.

Two questions

1. Is there no one out there able to offer positive suggestions to Jacolyn and her family?

2. This is hardly the first time that this issue has arise. I saw it first in 1987 when British parents started short-term attenances at the Peto Institite in Budapest: a 'switchback effect' of a zoom upwards in performance followed by dive back almost or entirely to previous levels. This did not of course happen for everyone (why not?) but it was common enough for the concept of 'top-up' to emerge soon as a possible way of cushioning the probem.

So here's the beef

Twenty years have seen all sorts of variation on this experience: 'summer schools, 'blocks' 'intermittant Conductive Education' etc. What do we actually know about the outcomes of such experiences, whether in the short term or in the longer-term perspective of childhood and family life?

And the most salient question, what do such short-term programs provide to prepare parents for what might happen next, or to help bail them out when things do not go well? Surely there are responsibilities here, both technical and moral?

Short-term programs have been an important factor in the international expansion of CE, and in the employment opportunities of conductors. They have been very important in exposing an ever-greater population to the conductive message and in some instances instrumental in the subsequent development of permanent services as one answer to the question of what to do when the circus leaves town

But we should not take them for granted.They are not umproblematical. What other solutions are there to the problems that they might leave behind them What works, and what does not?

And can anyone help Jacolyn?

Notes

Liek Triplets

Food for thought
I picked this up this story from Norman Perrin's Conductive Web, from its 'Parental blog' page. Day by day, week by week, this offers a window into the joys and sorrows of bringing up children with cerebral palsy, mostly of course when the conductor is not around.

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