Even though we are busy, I think it’s good for BC and I to be involved in research about matters relating to CP when asked to.
I feel a little unfair committing him to being involved in research activities that involve him putting in some effort, but so far, I’ve found that all those involved in studies have been lovely people and BC has found any tasks he’s been required to do really enjoyable.
I wouldn’t get involved in any research that was invasive or experimental, but those that are more about gathering data and information that will provide better understanding of CP issues are more than fine with me, as long as it’s fine with BC.
I think I mostly like us being involved in these kinds of studies because if there’s one thing that I have learnt since we’ve started our journey, it’s that there is a hell of a lot unknown about CP. The more research, the more that will be known for us and for others.
Since BC was a toddler we’ve been part of a 5 year study looking broadly at his gross motor development. We go in every 6-12 months and BC plays some games and they coax some movements from him in order to measure his abilities. He gets lots of attention and praise. He loves it. Each of the sessions is recorded on video. They’ve suggested that after our last session (later this year) we might be able to get a copy of the video footage from all the sessions. I hope we can. I’d love to be able to watch how he has progressed over that time. I bet BC would love to watch it too.
Recently, we spent a morning taking part in a study designed to look at the ways cognitive ability is tested in children with CP. There was lots of looking at pictures and choosing involved. Some of it was a bit tricky, but BC really enjoyed that too.
I wanted to be involved in this study, looking at possible genetic causes of CP. However, BC is not the right age, and I later realised that because my husband is not from a Caucasian background, we are ineligible anyway. If you’re interested in playing a little role in research, I think they are still looking for help with this study, from Aussie families with and without CP. (Note the very brief youtube cameo from Jimmy Barnes on the website ;-).
Today, I came across this research study from Europe about participation in ‘life situations’ (weird phrasing) of 8-12 year olds with cerebral palsy. It makes for quite interesting reading.
I was saddened to read about the number of children who regularly experience pain. And also saddened by how many have low participation in a range of activities.
It sounds like Denmark is on the right track.
I wonder how Australia would compare.
I like how the research paper draws on the UN Convention on the Rights of Persons with Disabilities in its introduction:
“Articles 23-30 of the 2006 UN Convention on the Rights of Persons with Disabilities, so far ratified by 34 nations, state that children with disabilities should be able to participate on an equal basis with others in family life, health maintenance, education, public life, and recreational, leisure, and sporting activities”
Now that’s a paragraph I think everyone, especially politicians and policy makers, should research and study very carefully.