Hi embracekulture, thanks for your comments. We have had a few children with Autism come through our programme, and we have tried some behaviour interventions, particularly through our occupational therapy programme and the school outreach programme, but we found that parents were very resistant to the recommendations that we made, in terms of addressing behaviours, creating routine and structure and even the understanding of Autism and it's management. Similarly, we have found local schools extremely reluctant to accept any children with Autism. I would be very interested to talk further with you about a parent intervention programme, and possibly some training from your team to ours to strengthen our knowledge and skills when working with children with Autism. We are currently running parents groups for children with cerebral palsy, with mothers trained to facilitate, and I think this idea could also work really well with other disabilities, including Autism. Many thanks and best wishes
Hi Jessica, I'm really happy that you've found the Getting to Know Cerebral Palsy programme, I'm sure you will find it really useful. We are currently writing and piloting a Getting to Know Early (0-2 years) Cerebral Palsy programme too, which is really exciting.
Other materials that you may find useful are: - Disabled Village Children - also available to download - World Health Organisation and UNICEF websites - there is loads of information and downloadable resources - World Cerebral Palsy Day website (worldcpday.org) - lots of resources here too.
Best wishes with your project, it sounds like you are doing some fantastic work,
Hi Jessica, thank you for your interest and comments about our idea. I have also seen your idea and think it's great that you are trying to tackle the stigma and misunderstanding of disability through community and religious leaders. That must be very challenging too, but I hope you are well received through the communities.
Our main training material that we use is the London School of Tropical Medicine 'Getting to Know Cerebral Palsy' parent education programme. This has been used worldwide for many years, and is written particularly for low resourced settings. We have some staff who are trained as facilitators, and work with 'expert mums' to deliver the programme to other parents. This works really well as it creates a network of support for the families, who are usually so alone and isolated by their communities, to support each other and can bring other family members into the support network.
We have found that our outreach programme, which makes monthly visits to local communities, either local health centres, schools or individual homes, helps raise awareness, breaks down barriers and increases inclusion in the communities as parents become more empowered and have a greater understanding of their child's abilities and disabilities. We run annual community activities, including an end of year party and an inclusive sports and family fun day and encourage all communities to attend.
We find that the mothers or grandmothers, who are the child's main carer, are extremely keen for any support, education and rehabilitation that we can provide, but there is often resistance from other family members, but once they start to gain greater understanding of disability and see improvements in their child, their resistance reduces.
I'd love to learn more about your project too, are any of the children in the communities receiving therapy and rehabilitation as well as training the spiritual and community leaders?