Parents' conference and children's workshop, Belfast, 16th May
Read HemiHelp trustee, Liz Barnes' write-up of the conference, and download the speaker presentations...
The Irish weather was living up to its reputation when we arrived in Belfast, but the warmth of the welcome we received more than made up for the cold wind and rain. About 50 parents came along, including a number of families from the Irish Republic and even from England. Alongside the parents’ programme for the day we held a drama and music workshop for children, and for the first time we also targeted our young adult members, with a workshop on growing up with hemiplegia run by my fellow-trustee Kathryn Skillings.
We had a great venue, the theatre department of Queen’s University, thanks to Brenda Palmer, author of ‘Hands Up for Andie ‘, who is on the teaching staff there. Brenda and her husband Richard, one of our speakers, were the moving force behind HemiHelp Northern Ireland, which for some years in the 90’s worked as a separate organisation before being reunited with the rest of HemiHelp.
The day began with an introduction to hemiplegia by Dr Janice Bothwell, a specialist in community paediatrics working in North Belfast, who started by telling us about her multidisciplinary team and then went on to answer the questions commonly asked by parents about their child’s hemiplegia. It’s good to see that doctors nowadays seem much more willing to give out information about the condition than 23 years ago when my son was born - partly because they probably know more about it themselves, but also because they see parents as partners in their child’s treatment. Her closing point was that parents should not impose limits on their children – if a child wants to do something he or she will do it – and she told a story she heard from a Canadian colleague who diagnosed a child with diplegia (both legs affected) and told his parents he probably would never skate - a big thing in Canada. Ten years later the boy came to tell the doctor that he was on his school ice hockey team.
After coffee we had a talk by Physiotherapist Alison Mounstephen and OT Julia Maskey, who work at a special school in Belfast, and who also stressed the role of parents and the importance of play and other everyday activities in encouraging our children to be as two-sided as possible. We then broke up into groups for three workshops. Richard Palmer shared his experience as SENCo at a Belfast school with parents concerned about getting the right support for their children. One of the main concerns in this area is that Northern Ireland has just abolished the 11 plus but not selective schools, and no one knows how selection will take place and whether children with additional support needs will get extra time etc.for any new tests that are introduced.
We had funding for this conference from the Roald Dahl Foundation, and in another workshop their representative James Fitzpatrick discussed with HemiHelp staff and interested parents how the Foundation might be involved in supporting our work in N Ireland in the future. But the most popular workshop was the one run by Kathryn, talking about her experience of growing up with hemiplegia – everything from splints and shoes to fighting for DLA as an adult and being offered a garden chair to use in the shower in her university accommodation.
After lunch we heard about a very positive approach to helping our young people make the transition from school to college, university and work. The Cedar Foundation starts from a vision of a society where disabled children and adults are fully included citizens, and one of their core areas is a two year transition programme which usually starts in the last school year and continues through the next year. Last year they supported 220 young people coming out of both mainstream and special schools and 90% of those have successfully entered further or higher education or a government training scheme. I must say I was very envious of their success –being in a small geographical area makes it much easier to provide a high quality service and have a real impact on young people’s lives.
Our last speaker of the day was Richard Palmer, who from his experience as a SENCo gave an excellent overview of the challenges facing children and young people with hemiplegia at each stage of their school lives and how best to help them: one suggestion I hadn’t come across before was asking for two sets of textbooks, one to stay at school and the other at home, to lighten the daily load. But Richard’s key advice, something we at HemiHelp have also always stressed, was that the most important thing is to find a school that is positive about your child and willing to be flexible and imaginative in their approach to supporting him or her.
We rounded off the day with a tea party and lots of good comments from parents:
“I really enjoyed meeting other families. My daughter enjoyed the music workshop”
“Great - very important to have an engaging hemi adult to give understanding of the condition”
“This was a very useful and well organised event – thanks a lot!”
- Dr Janice Bothwell, Consultant Paediatrician - Hemiplegia, an introduction and Q&A
- Alison Mounstephen and Julia Maskrey - The role of the OT/PT in treating the child with hemiplegia
- The Cedar Foundation - A Model for Transitions Services
And see what the children got up to in their workshop...