It’s a common complaint among carers of children with complex needs: I spend so much time being a nurse, being a therapist, I sometimes don’t get a chance just to be a parent. I don’t want only to interact with him through a feeding tube, a syringe, and a set of physio exercises in a pair of uncomfortable boots; I want to play with him, cuddle him, enjoy him like my other children, take his boots off, rub his feet and stroke his hair.
So much of our day is taken up with Benjamin’s immediate medical needs – chest physio, suctioning, administering medications, giving tube feeds; not to mention his personal care – nappy changing, dressing, bathing – that sometimes the benefits of longer-term therapy seem so far off, so intangible, particularly for a life-limited child, that it gets pushed to the end of each day and then forgotten.
Don’t get me wrong. I appreciate – so much – the guidance of our physio, speech and language therapist, community nurses and visiting teachers. I am so grateful to be able to keep Benjamin at home rather than in hospital. And I do want him to be the best he can be, now and in the future, of course I do. But sometimes I just want to be his mum.
What if there was a way to do both?
A way to do therapy that had immediate impacts as well as long-term benefits? A way that integrated therapy into everyday life? A way that combined therapy with play, and with communication? A way in which ugly equipment has its place, but sitting together on the sofa can be just as useful? A way in which tiny changes can make a big difference?
We’ve just spent six gruelling weeks travelling back and forth through the roadworks on the M8 to Glasgow’s Bobath Cerebral Palsy Centre, to take part in their Big Lottery-funded, Right Start Programme for children aged 2-5.
We did learn exercises we can do with Benjamin on a ball, on a bench, in a stander, when we want to and he wants to and we have time. But we also learned how to warm him up before exercising, so that he gets the maximum benefit with the minimum effort. We learned how to challenge his head control when picking him up, how to raise his awareness of his own hands whilst putting his jumper on, how to stretch out his hamstrings while changing his nappy, how to relax his fists while washing his hands. In short, how to be a mum and a therapist at the same time, without even thinking about it.
We learned how to use our own bodies to support him in different positions – how boobs and a belly can be more supportive than a chair and more responsive than a ‘memoryfoam’ mattress. How to do ‘peekaboo’ or to pretend we’re going to let him fall then catch him. How to play, or sit together, or even watch TV together, without feeling guilty that we’re wasting therapy time.
We learned how small changes can make an immediate difference. Simply checking his posture, rolling his shoulders back and opening out his chest when he’s seated in his chair or in his buggy can set off a chain of muscular adjustmentsthat help him to hold his head up better, to control his eye movements, and ultimately to interact more meaningfully with those around him (if, that is, he can see past his fringe). Immediate rewards that provide the impetus to keep going even when the long term goals seem so distant.
It’s not rocket science. In fact I’m sure most of the things we learned could have been taught by our NHS physiotherapist or speech-and-language therapist. But the six weeks of intensive contact time we spent at Bobath would take them maybe a year to achieve with their overfilled, underfunded schedules, and it’s harder to make progress without momentum.
In actual fact, I don’t think we’ve even scratched the surface of what Bobath has taught us. In the thick of an intensive course, with three hours’ driving for each appointment, on top of two days’ nursery a week and the usual hospital appointments and home visits, none of us – least of all Benjamin – really had the energy to get home and practice much more than a few stretches before bed. But armed with a DVD and a personalised instruction manual (complete with comedy photos of Benjamin and I in all sorts of positions) I hope over the weeks and months to come we’ll be able to build on the improvements we’ve already seen in his head control and visual focus, his more relaxed hands and body awareness.
I can’t thank the team at Bobath Scotland enough, for putting up with me and my army of grubby children, for supplying a good cup of coffee each morning, for treating Benjamin with respect and for believing in his potential, and for encouraging me to cut his hair.
The Bobath Scotland Cerebral Palsy Centre is based in Glasgow. Their Right Start Project is funded for five years by the Big Lottery Fund. But they rely on fundraising for 85% of their income in order to keep doing the work they are doing across Scotland, from the Highlands to the Islands, supporting the 15,000 people in the country with cerebral palsy and related conditions. If you’d like to support their work you can donate £5 by texting HIGH05 £5 to 70070, or you can find details of how to donate at www.bobathscotland.org.uk/donate.