Early Years in London
With 71 parents, one grandparent and 19 children, 16 of them with hemiplegia, our Early Years workshop was the largest information event HemiHelp has ever held.
The day was chaired by Dr Kim Bevan, head of Community Services at the Tuke Centre (a counselling and therapy service) in York, and parent of an adult son with hemiplegia.
An overview of hemiplegia
The day began with a very clear and informative overview of hemiplegia from Dr Neil Wimalasundera, a consultant in Paediatric Neurodisability at Great Ormond Street Hospital.He stressed the fact that parents are the first to notice that their child may not be developing in line with children of a similar age, and that they should push for a diagnosis, which should always include an MRI scan. A show of hands in his audience revealed that this was far from the case, so he urged anyone whose child had not had a scan to ask for one.
Other tests that should be, but are not always, done are for hip function (a hip problem will go on to affect knees and ankles) and visual field defects (which occur in 25% of cases).. Neil touched as well on the ‘hidden’ difficulties that often go with hemiplegia – difficulties with learning, behaviour, anxiety, friendships and so on, but again emphasised the family’s role in giving their son or daughter as ‘normal’ a childhood as possible, helping them in developing their confidence and encouraging their participation in life to the full.
The rest of the morning went to the key professionals in the child and their family’s life – physiotherapists and OTs. Physio Birgit Mueller-Winkler began by discussing the aims of physiotherapy: optimising both physical factors (range of movement, muscle strength, mobility versus stability, the importance of core strength) and sensory development (awareness of both sides of the body, reduced or increased sensation in the affected side) and also encouraging the acceptance of being different by both child and family. And while encouraging the incorporation of therapy into everyday life, she emphasised that there was such a thing as too much, and a stressed parent meant a stressed child. It is also important, for example, to give a child enough time to do an activity.
There are various approaches to physiotherapy available and parents may wish to look outside the NHS for extra treatment if they have the means, but Birgit also insisted on the importance of communication between the professionals concerned.
OT Jessica Harris began by highlighting the importance of the child being aware of both sides of their body and of correct seating and positioning for not only making activities easier but for preventing secondary effects such as pain or muscle shortening. She also reminded us that the affected side might have been the child’s dominant side, so that they may take longer to learn skills because they are being forced to use the other side. Jessica discussed intensive therapy programmes using both CIMT (constraint induced movement therapy) and bimanual therapy: they were both, she said, very intensive and time-consuming, and not suitable for everyone. They were, however, quite effective for young children if used together, starting with very short sessions and increasing their length as the child grows.
She stressed, however, that ordinary play is equally important, as it is with all children: the child should take the lead in choosing toys and activities, but these should change frequently, before he or she gets bored or upset.
Living with hemiplegia
After lunch we looked at other aspects of living with hemiplegia. Joanna Griffin, HemiHelp’s Home/School Visitor for Southern England and Wales, gave us a moving account of her search for the right school for her son Jamie, who is now eight. He started at a local private nursery at 18 months, where his additional needs were assessed, and the Griffins assumed that he would fit into mainstream at primary level if given the right level of support, like the majority of children with hemiplegia.
A small school with few steps, a nurturing ethos and experience of cerebral palsy seemed right, and preparations were made with visits, OT support etc., but its resources were in fact not sufficient for Jamie’s additional needs and he was unhappy and didn’t thrive there. Another search began, and eventually success was found in a moderate learning difficulty (MLD) school, with small groups, learning at Jamie’s pace, expert teachers and true friendships with his classmates.
The emotional impact
Our last speaker of the day was psychotherapist Pamela Bartram, and the focus moved from children to parents, and the emotional impact of having a disabled child. Pamela took us through the discovery that all our hopes and expectations for our child are no longer relevant; the guilt we feel about accepting help or breaking down; the revisited trauma at difficult moments as the child fails to reach another milestone.
We also learnt about the need for acceptance: some parents deny the disability, others go into overdrive and expend all their energy on fighting the system on behalf of their child, and can become alienated from family and friends. Treatment can become a fetish; parents need to find a balance and look at their whole child and not just the disability.
This excellent message at the end of the day was followed by the chance for parents (and the one grandmother) to talk together about the issues, practical and emotional, that they were facing, and for HemiHelp staff and volunteers to talk about how we can lend our support.