Systems of support aren’t always automatically in place for disabled children and their families, and the world simply has not been designed for disabled people. As parents of disabled children, we have to champion, persuade and shout loudly on our kids behalf. 

Our interview with Caroline discusses the battles with getting a diagnosis for her daughter Dottie, the struggles she had to persuade the right people to listen and the impact this had on her mental health. We talk about the challenging process of getting an Educational Health Care Plan, which most families experience and how this inspired Caroline to use her professional experience to support other parents going through the process. We talk a lot about the journey of acceptance and how even though Dottie is largely nonverbal, she is able to advocate for herself and communicate her wants and needs extremely successfully, often getting exactly what she wants. 

Trigger and Content Warnings

Death in early infancy

Misdiagnosis

Suicide

Struggles with mental health

Postnatal Depression

Guest Biography

Caroline lives in Surrey with her husband Matt and two children – Dottie (5) and Roo (3). Caroline has 20 years’ experience as a lawyer and has spent the last 10 years as Legal Director at Virgin Media O2 (previously with Virgin Media). Caroline is also Trustee of Support SEND Kids, a charity founded by lawyers to aid families in securing educational support for children with special educational needs and disabilities. Caroline’s current mid-life crisis is taking up the drums, and she can be found in her spare time re-living her teenage years rocking out to grunge music. 

Resource Links 

Support SEN Kids - charity connecting SEND families, professionals & lawyers https://supportsendkids.org/

SWAN UK: a great resource for families of children with undiagnosed genetic conditions https://www.undiagnosed.org.uk/

Source for statistic cited 95% EHCP appeals succeed: Gov.uk Tribunal Statistics:

https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2020

https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2021

The Social Model of Disability

https://www.scope.org.uk/about-us/social-model-of-disability/

https://en.wikipedia.org/wiki/Social_model_of_disability

The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functioning’s. The social model of disability diverges from the dominant medical model of disability, which is a functional analysis of the body as a machine to be fixed in order to conform with normative values. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation, these do not necessarily have to lead to disability unless society fails to take account of and include people intentionally with respect to their individual needs.

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