The aim of Encephalitis in Childhood is to provide a web site with opportunities for information exchange between parents, people who were ill with encephalitis as a child and professionals.
I am Elaine and the creator of Encephalitis in Childhood. My son was ill with encephalitis in 1991 and has many subsequent problems which have required me to advocate on his behalf with medical, educational and social departments. I am the founder of the Encephalitis Society and worked for the Society from 1994 to 2012 in a management role and as Information Coordinator gaining extensive knowledge of encephalitis in childhood. As Information Coordinator, I was responsible for Information Resources both in print and electronic form. This included fact sheets on specific aspects of the illness, general leaflets giving an overview, comprehensive guides, an Information DVD, material explicitly for children and teenagers and building and maintaining the website. I left the Encephalitis Society in 2012 to set up this project. In 2014 I was awarded an MBE for services to Encephalitis.
Hello, I'm Jude, currently living in Los Angeles, California. We moved over here in 2011 from England and love it! We have lived also in Hong Kong and Singapore.
We have 2 children, aged 16 and 17. They are both in school and doing well. We have variously homeschooled and they been in private and public (state) schools. Our son is just about to go into 10th Grade in our local high school and is a great son and brother. Our daughter is a wonderful young woman who is now in a non-public school which is a state-funded special-ed school for students on the Autism Spectrum and similar conditions (Fragile X and such like). Our daughter had Encephalitis when she was 3 and was diagnosed with Autism a few years ago. That was an interesting (!) development in our post-ABI journey, along with OCD, anxiety and various developmental issues.
My background is as a teacher of K-12 or Year 1-13 depending on which country you are reading this in! I'm not working at the moment but spend a lot of time looking after the family and have set up a weekly drop-in support group with another mother at my daughter's school. I am helping with the start of a music programme at her school for September.
My specialist subject is Encephalitis! I have researched and studied and lived this for nearly 14 years as a parent and feel that I will be able to be a very useful person for advice. My daughter is verbal and if you need a perspective from the point of view of someone who lives this as a teenager, I can ask her for help too.