Chapter 3 – Foetal Alcohol Spectrum Disorder (FASD)
Even though I have worked in the special educational needs (SEN) field for 20 years now, once I entered the world of fostering, it opened up many more doors, additional insight into SEN, and things I had been completely oblivious to.
In society’s eyes Layla seems ‘ok’, ‘normal’. To me, her mum, of course, she is. Yet, every day is a challenge for Layla. As well as cystic fibrosis, Layla has foetal alcohol spectrum disorder (FASD), sensory processing disorder (SPD), a feeding tube (PEG), attention deficit hyperactivity disorder (ADHD), low muscle tone, hypermobility syndrome, hypoglycaemia, a learning disability as well as other things. Layla has also recently been assessed for autism.
So let’s start with foetal alcohol spectrum disorder. Technically people with FASD are lifelong recovering addicts. This affects Layla’s brain, as she has brain damage, due to her birth mother’s drinking heavily throughout her pregnancy. Foetal damage from drinking alcohol is in most cases more severe than drug abuse during pregnancy. This means Layla will always have FASD, and, as she grows older, her ‘issues’ will become harder. Some statistics on it – 35% of adolescents who have FASD have had serious suicidal thoughts, whilst 13% make a serious attempt, contrasted with figures of 17% and 2% respectively in the general adolescent population (US National Library of Medicine), whilst many end up in the criminal system or homeless, because society does not see their disability, or understand it. However, with strategies and structure many are able to live a life that they want and follow their dreams.
Shushma’s book ‘Layla’s Life, my Words’ is available to purchase here.
You can hear from Shushma Jain at NAHT’s SEND Conference 2021 – New Perspectives on Neurodiversity on 20 October in her workshop, The world of my child with FADS-an invisible disability. Join us in-person in Manchester or virtually.