Cylene

About Me

I am a mum of three young children and live with my husband and our children. We are a loving family, but we have significant additional needs and health difficulties within our household, which can make everyday family life challenging.
I have several long-term health conditions, including Addison’s disease, fibromyalgia, adenomyosis, PCOS, autism, ADHD, PTSD and idiopathic intracranial hypertension (IIH). I also suffer from severe migraines and headaches. My health can significantly affect my energy, pain levels, mobility and ability to manage everyday tasks. I have recently required hospital admission and investigations because of my IIH, which has been extremely difficult physically and emotionally.
My husband is an important source of support, but caring for three children with additional needs while managing my own health conditions can be overwhelming, particularly when I am unwell.
My children
All three of my children have additional needs and require varying levels of support.
My eldest child is autistic and has a diagnosed genetic microdeletion, microcephaly, global developmental delay, pica and diagnosed hypermobility. They have significant difficulties with communication, learning and independence and require considerable support with everyday activities, education and safety.
My middle child is autistic and has the same inherited genetic microdeletion. They have suspected arthritis and hypermobility and experience pain and other physical symptoms that are being investigated. They also have significant difficulties around eating and have an eating disorder, requiring additional support and monitoring.
My youngest child has the same inherited genetic microdeletion and has developmental and physical concerns currently being assessed. They are suspected to be autistic and are also suspected to have hypermobility and cerebral palsy. They have significant difficulties with fine motor skills and mobility, including walking difficulties and becoming more affected when tired. They have previously required physiotherapy and continue to need developmental support.
Support we need
Our family would benefit from practical, emotional and coordinated support that understands families where multiple children and a parent have additional needs and health conditions.