Conference for Parents Cardiff 2013
In May 2013, the HemiHelp conference for parents took place at the Thornhill Church Centre, an excellent venue on the outskirts of Cardiff; and we even had a warm, sunny day for it. Twenty four families attended, from various parts of Wales as well as England, and while all the children (including brothers and sisters) were busy with activities upstairs their parents had a full programme of presentations on ‘perspectives on living with hemiplegia’.
‘The workshop was great. I enjoyed making things’ (Hattie, aged 7)
Our first speaker was Michelle Barber, a consultant paediatrician based in Newport, who gave us a very full and useful overview of hemiplegia (now, it turns out, officially known as Spastic Unilateral Cerebral Palsy). Michelle, as a neurologist with a particular interest in epilepsy, made sure she gave enough emphasis to this and the other ‘invisible’ effects of hemiplegia that can be far more disabling as a child grows up than their visible impairment.
By contrast, our next presentation, by senior physiotherapist Gabriela Todd, not surprisingly concentrated on the physical, and how activity leads to independence of all kinds. Gabriela began with a look at the importance of early intervention for both movement and sensory development, and also stressed the importance of continuing participation in active leisure, whether in the family or local facilities, either inclusive or disability based depending on the child’s ability.
‘It’s fun and it makes me happy’ (child talking about cycling)
Gabriela however quickly got on to the activity closest to her heart – cycling, with its enormous benefits for both muscles and moods. Gabriela is very much involved with a local organisation called Pedal Power , whose mission is ‘to make cycling accessible to all’. They have two cycling centres in the Cardiff area, with a range of bikes and trikes to hire (so someone can discover what’s best for them before buying an expensive model) and run an assessment and cycle maintenance service.
Lucky people in Cardiff – but Pedal Power also runs training courses open to anyone. One of their main ideas, that differs from the conventional way of teaching children with hemiplegia to cycle, is to start by developing the child’s balance, using a running bike without pedals, and only then going on to a more conventional bike (read a family’s experience of riding a balance bike on page 11)
‘We found this talk helpful as doubted we’d get T to ride a bike independently, but hope to make it on one of Gabriella’s courses to see if we can get him going.’ (parent)
The fine weather made it difficult to lure some families back indoors after lunch, where they divided into groups for the main session. Some listened to Denise Inger of Snap Cymru, the organisation that runs Parent Partnership Services in Wales, talk about negotiating transition first between nursery and school and then between primary and secondary education. And for those whose children didn’t fall into one or other relevant age range, they had the chance for a chat session with other parents, facilitated by HemiHelp trustee and parent Anna Philips. Being able to share hopes, concerns and experiences is always an important part of HemiHelp events, especially since children with hemiplegia are spread all over the country and they and their parents may not otherwise meet people like them.
‘She loved that she met someone who has hemi just like her’ (parent)
But before that came the undoubted highlight of the day, when two adult members of HemiHelp, Joanna Sholem and Deena Hundalani, talked about their experience of growing up with hemiplegia. Most families had never met an adult with the condition, and they found the two stories, showing that having hemiplegia doesn’t mean living half a life, both moving and inspiring.
‘Loved these two ladies, a real inspiration and valuable to listen to’
All in all, the day was judged a great success. Watch this space for the next one – it may be near you!
Catch up on the day's presentations:
An overview of strengths and difficulties that children with hemiplegia may face - Dr Michelle Barber, Consultant Paediatrician Child Health Department, Royal Gwent Hospital and Serennu Childrens Centre, Newport