Setting up your own local group... It’s easy!
My name is Chevs and I have two children, Holly (five) and Maisie (two). Holly suffered from a bleed when I was about 16 weeks pregnant which left her with right-sided hemiplegia, epilepsy and she also borders on autistic spectrum disorder. I attended the HemiHelp parents’ conference in 2002 and realised how comforting it was meeting other parents of children with hemiplegia and discussing the issues that affect Holly. I decided to see if there were any parents living nearby interested in meeting up and I put a letter in the next issue of the HemiHelp newsletter.
Within a few weeks I had six or seven responses from people living within easy reach, and our coffee mornings began! It has been very easy to organise: I simply send out round-robin emails (I checked that everyone was happy for their email addresses to be circulated) with a proposed date, usually in the afternoon so that we can bring the children. Unfortunately it is quite hard to find a time that suits everyone as we all have commitments of school runs, endless physio, OT, speech therapy and work, so we generally go for the date that suits the majority. I try and organise the occasional weekend meeting so the whole family can come.
Although there are rarely more than two or three of us at any one meeting, I look forward to them enormously. It has amazed me how different the needs of our children are and what an all-encompassing condition hemiplegia can be, yet we all have an enormous sense of commonality of what we are going through. Within our group, the children vary from six months to five years. Having not seen another bottom shuffler since she started walking, watching one of the younger members whizzing around the floor on her bottom reminded me of how far Holly has come since her trouser-tearing days! It also reassured this little girl’s mum, that bottom shuffling won’t last forever!
Now that we have been meeting for several months and have got to know each other, our gatherings are a combination of letting off steam about our everyday concerns for our children as well as moving away from the subject of hemiplegia altogether and generally just enjoying a good old chin-wag. Friends with the best of intentions cannot offer the same level of understanding of what you are experiencing as can another parent going through the same thing. It has been incredibly good for the soul and really helpful in a practical sense too. Everyone brings their own experiences and knowledge to the group so we all benefit from shared information. It’s amazing how much effort people put into researching their own individual areas of concern and it has been really useful to get information I might never have known even existed. Equally, I hope that I contribute in my own little way too!
With all our children at different stages, we talk about a variety of concerns: from behaviour problems to speech therapy; from botox to statementing; from (lack of) sleep to disability allowance; from epilepsy to splints, toilet training to feeding problems…and the list goes on.
The end result is that the sense of ‘why us?’, and of being the only ones out there trying to deal with all that hemiplegia throws at us, is greatly eased. Not only do I have a regular opportunity to offload some of my worries with people who really can relate to what I am talking about, but most importantly I have made some really good friends.
It is easy to get a group going and is worth every minute of effort. Wherever you are, I am sure you will find there is someone nearby going through what you are.