Carol-Anne is one of the OG CDKL5 moms! Her daughter, Amber, is nearly 20 years old and Carol-Anne has been on the scene getting involved for CDKL5 even before her daughter was officially diagnosed. She’s co-founder of CDKL5 UK, a professional social worker, and is passionate about supporting families, raising awareness, and challenging assumptions.

In this latest episode, we talk with Carol-Anne about the early days of diagnosis, what transitioning to adulthood has been like and the challenges of navigating social systems in the UK. We also talk about the importance of learning to understand our children’s unique methods of communicating, and how that clarity matters for family quality of life.

Thanks for joining us, Carol-Anne!

SHOW NOTES

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MENTIONED IN THE EPISODE:

• CDKL5 UK

• CDKL5 Parent Support Group on Facebook

• Chronic Sorrow - Sociologist Simon Olshansky first coined the phrase “chronic sorrow” in 1962. Chronic sorrow is often experienced by parents and caregivers who have a child with a disability. He felt that the grieving did not ever reach a closing point and the intensity could increase during certain stages of that child’s life.

• Billy Adaptive Shoes

• Colin Farrell Opens Up About Son

• Bristol UK CDKL5 Center of Excellence