My daughter has invisible disabilities. One being Foetal Alcohol Spectrum Disorder (FASD). Even though I was a SEN teacher and my brother had SEN, what I have come to realise, is that society has defined what a child, or person with Special Educational Needs (SEN) or disability should look or act like, but that is not my daughter.
I get frustrated trying to explain to professionals, friends and strangers that my daughter is not ‘naughty’ or ‘disobedient’, but has an invisible disability. Many people who do not have personal experience with the special educational need’s world, perceive SEN to be a singular thing, i.e., a person in a wheelchair, who can’t talk or understand you and is not toilet trained.
What is FASD?
Hardly anyone in the wider world knows about FASD, yet it is the most common, non-genetic cause of learning disability in the UK. (BMA 2007, rev2016). This condition is totally preventable, yet due to the taboo surrounding drinking alcohol whilst pregnant, it is hardly talked about.
My daughter has brain damage, due to her birth mother drinking heavily throughout her pregnancy. My daughter’s ‘issues’ will become harder as she gets older. 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.
Here are some statistics: 35% of adolescents who have FASD have had serious suicidal thoughts, whilst 13% make a serious attempt. Contrast this with figures of 17% and 2% respectively in the general adolescent population (US National Library of Medicine).
Many will end up in the criminal system or homeless because society does not see their disability, or if they do, the disability is not properly understood. However, with targeted strategies and structure many are able to live a life that they want and follow their dreams.
Raising awareness
Guidance recommends that no alcohol be consumed during pregnancy, or when planning a baby. However, some women may be drinking, not realising they are pregnant and by the time they do, it may be too late. Therefore, it is important to raise awareness and to give prospective mothers as much information as possible, then they can make informed choices. They must be supported, rather than have a stigma attached, both before the birth and after the birth of their child. According to Professor Barry Carpenter, a lead researcher in the FASD field, when he lectures in schools a good 50% of teachers have not heard of it. He also suggests that FASD could affect as many as 1% of children in Western countries.
Hopefully, I can educate a few professionals who have not heard of the diagnoses Layla and others have and to encourage them to be supportive of the families, as well as the child. Professionals often make the journey harder by not understanding what the child needs and therefore can’t offer the right support, which then means, the families have to spend valuable time advocating, or being more vocal than they would like to be heard for their child. This part of the SEN world is relatively unknown to those outside of it, even though it is becoming more and more prevalent.
I also hope that the book may help parents whose children have the same educational needs as Layla feel less alone, to show it is hard work, but with strategies, love and patience, there is hope and beautiful moments.
Written by Shushma Jain who is a parent, foster carer Group Lead Facilitator and writer.
Author: Shushma Jain
