Early Years Workshop
March 2013 saw HemiHelp run our first ever Early Years Workshop in Leeds. Our chair for the day, Alice Doyle, HemiHelp’s CEO, started off with a warm welcome message to all 34 families who have recently had a diagnosis of hemiplegia and came to learn more about the condition and meet each other.
Our Events Coordinator, Samantha Lee, tells us how she came up with the idea of running this very successful event: “Since my daughter was born, I have often thought that absolutely nothing I had heard, read, ‘Googled’ or watched on TV could have prepared me for the rollercoaster ride of my life that was called ‘parenthood’.
My saving grace was joining a pre-natal and then a post-natal group where I made friends with other mums going through the same things as me. It was so comforting to share my worries and have someone else who knew what I was going through… I am still friends with the same parents today, nearly seven years on.
When I started working for HemiHelp and began learning everything I could about hemiplegia, I had the same thought again, only this time it was: ‘If I felt that way about becoming a parent, what on earth must it feel like to become a parent of a disabled child?’ It was then that the seeds for our ‘Early Years Workshop’ were sown – to develop an event for parents of children aged 0-5 years, especially those with a recent diagnosis, to help make sense of the condition and, to put them in touch with other families dealing with the same issues. An event where they could share worries and experiences and be reassured that they were not alone. Also to educate families about hemiplegia so that they had the confidence to seek the right help for their child in the coming years.
So after over a year of planning, we finally launched the first ever Early Years Workshop in Leeds. In total, 21 children with hemiplegia and 15 of their siblings had masses of fun in a crèche activity programme that ran alongside the workshop, and 51 parents together with 11 grannies, granddads and aunties attended the workshop.“
The conference sessions brought together medical professionals and parents to tell us about hemiplegia and its associated problems, medical treatments, school life and the support that HemiHelp provides. But perhaps the most important session of the day was the parents’ chat, where families had the opportunity to share information and concerns.
“[The parents’ chat was] useful – brought out helpful topics and some good tips”
“ [It was a] great opportunity to meet other parents.”
“It was a great day and felt that I came away much more knowledgeable and armed with plenty of tips! “
Summary of the presentations
Dr Anne Kelly, Consultant Paediatrician from St James’ University Hospital of Leeds, gave a detailed overview of hemiplegia covering a wide range of aspects, from its causes to the specific effects on the lower and upper limb, as well as a summary of the different treatments available.
She also looked at many of the associated problems children with hemiplegia may experience, stressing that these aren’t necessarily relevant to all families as hemiplegia doesn’t affect two children in the same way.
Dr Anne also talked about how early intervention plays an important role in brain development. The young brain has the ability to reorganise itself to compensate for damaged areas (what is called brain plasticity) and early physical therapy helps stimulating this process.
Following this idea, our next speaker, Helen Abiad, Senior Specialist Paediatric Physiotherapist from Yorkshire Children’s Physiotherapy, highlighted the importance of physiotherapy in helping the brain learn “normal” patters of movement, and so encouraging brain plasticity.
Helen introduced some new concepts that gave us an idea of what children with hemiplegia may experience doing some daily activities. She talked about “proprioception”, which refers to the awareness of your limbs without looking at them, which is an area of difficulty for children with hemiplegia. We realised that proprioceptive feedback is very important to everyday movements, for example, it allows us to walk or drive without looking at our feet.
The next speaker, Tess Forsdyke, HemiHelp’s Regional Reach Coordinator for North Yorkshire, spoke about her own experience as a parent of a 5-year-old child with hemiplegia and about moving into school. She stressed the importance of arming yourself with as much information as possible to help others understand the condition, and the importance of encouraging teachers to work as part of a team. All you know about your child combined with what teachers know can provide a fuller understanding of his/her abilities and needs, and you may be able to better support him/her.
The last presentation of the day was about HemiHelp and what we do to support families, by Simon Crosby, HemiHelp Chairman, who has known the charity for many years as his family has also benefited from many of the support services we provide. He came with a very special guest, his 9 year-old son Benjamin, who was very brave to appear in front of so many people and delighted us with an exposition of his splints collection.
Click on the links below to download copies of some of the speakers' presentations:
Hemiplegia - The Early Years. Dr Anne Kelly, Consultant Paediatrician, St James; University Hospital, Leeds
Starting school - family case study. Tess Forsdyke - Regional Co-ordinator, HemiHelp
Our services - how can HemiHelp support you? Simon Crosby, HemiHelp Chairman and parent of a child with hemiplegia