Kate would like to share some links to organisations that have been useful in our endeavours.
PAMIS
PAMIS is the only organisation in Scotland that works solely with people with profound and multiple learning disabilities (PMLD) and their families for a better life. Their commitment is to ensure people with PMLD are valued both as individuals and in the contribution they make to the community.
PAMIS also ensure that the knowledge and experience of the family carers is recognised and that their views are fully taken into account in relation to the support they are offered.
For example, PAMIS provided a Transition Co-ordinator to help and support us through transition from children services to adult provision, which is an extremely stressful time for families. They were the key communication point between all the services, education, social work and health. They helped ensure that my voice and Laura’s needs were listened to, without their input and support we would have had a massive struggle.
For all your support over the years, thank you PAMIS!
The Challenging Behaviour Foundation
The Challenging Behaviour Foundation are a charity for people with severe learning disabilities whose behaviour challenges.
Their mission is to improve understanding of challenging behaviour, empower families with information and support, and to help others to provide better services and more opportunities to children and adults with severe learning disabilities who display challenging behaviour.
They provide workshops and training throughout the U.K. They also provide fact sheets and videos that have proved invaluable to many families, carers, and professionals.
I am so grateful to them for the knowledge, skills, and training that I have received from them over the years. They have made a huge difference to not only Laura’s life but to all of us as a family.
When we were struggling to make sense of Laura’s behaviour they provided support and the tools to help us understand the function of Laura’s behaviour – we use their positive behaviour support plan and traffic light system in Laura’s Passport. They provide much needed information to families like mine allowing us to have a much happier and fulfilled life. A big thank-you to all at the CBF!
Cerebra Centre
The Cerebra Centre For Neurodevelopmental Disorders focus on the difficulties experienced by children and adults who have genetic syndromes that are associated with neurodevelopmental delay.
Laura was previously diagnosed with Cornelia de Lange Syndrome which is a fairly rare syndrome. Often doctors and other professionals have not heard of it and have little to no information on it. Cerebra (on their Further Inform Neurogenetic Disorders [FIND] site) provide a wealth of well-researched information on this particular syndrome (as well as others).
Their information spans behavioural, emotional, and developmental issues. Access to this has furthered my understanding of Laura’s condition, resulting in improvements to the positive support strategies we put in place to help Laura cope and learn – tailoring her environment to suit her needs.
Another great aspect about this resource is that you can hear other parents speaking about different aspects of their child or adult’s experiences. Knowing that I am not alone in the difficulties I deal with on a daily basis has been a true help.
Our exploration of Cerebra’s FIND site is a relatively new experience. We are looking forward to finding out more from them as time goes on. Thank you for helping give Laura a greater chance to develop her skills and of experiencing aspects of every day life that many of us take for granted.
My Communication Passport 