When I was twelve the world of children with Profound & Multiple Learning Disabilities (PMLD) was opened up to me after my cousin had his first severe seizure at the age of three. He suffered a significant loss of cognitive function and was later diagnosed with Lennox Gastaut syndrome. From the beginning I wanted to help support my auntie and uncle the best I could, spending weekends with them and weeks in the school holidays, and as soon as I was able to drive myself I would do as much as I could to help. When I was eighteen, I volunteered for Portsmouth Autism network working in their siblings group and after a few months I was leading the group.
At nineteen I got my first paid role in learning disabilities working for the Roseroad association as an outreach worker. I continued in this role for 5 years. In this time I worked with a variety of young people and families. This ranged from children with PMLD and complex medical needs to those with a mild learning disability. I found that I enjoyed working with young people with PMLD and complex medical needs, often working within their homes for a number of years, getting to know and support the families. I became an unofficial hub of information for parents; sharing ideas for outings, equipment, and holidays, which I had learnt from other families. I also became a figure of trust such that parents felt able to share their frustrations, issues, and achievements.
Alongside this role, at twenty I became a special school assistant at Rosewood school. During this time I started to learn about ways in which young people with PMLD learnt, communicated and interacted with the world. I also started to see the differences in understanding between families at home and school. At twenty-two I became a play leader for the Roseroad association, running an after school club for a range of young children with learning disabilities. In this time I observed that after dropping their children at the group parents would often stop and chat to parents of alike children, discussing different issues that had come up for them in their weeks.
In the last few years I have been studying at university, processing and consolidating the experiences and observations I had made over this time. I realised that I had observed a problem within parents of children with PMLD; there was no central place for them to meet, share information and support each other.
This is how the idea for PMLD connection was born.