It’s essential we look beyond stigma and blame when we talk about FASD.
It was only in 2016 that the UK Chief Medical Officers changed the guidance to say it’s safest to avoid alcohol in pregnancy and when trying to get pregnant. That information was rare in the past and is still not out there widely.
As the late Pip Williams (founder of the UK-EU Birth Mothers Network-FASD) used to say, “No woman drinks because she wants to harm her baby.” She prepared this list of 7 reasons why women continue to drink in pregnancy:
This is drawn from “Why do girls and women drink alcohol during pregnancy?” from Manitoba. You can read a statement by Pip Williams before a policy roundtable here.
Birth mums have been speaking out for decades about the challenges they face.
My son was diagnosed after many years of referrals to paediatricians, OTs, therapists, speech and language, CAMHS, school support workers, children’s services and more. The list goes on. It’s only when you look back over the years that you realise just how many professionals it took, to finally get to the point of diagnosis and support. Yet, I have had to explain what FASD is to almost every single one of those professionals…. Guidance needs to be stricter and clearer, more accessible. When I was pregnant I gave up all the standard stuff, as advised by my midwife: blue cheese, soft cheese, raw eggs, peanuts, etc. I’d like to think that had I been told about FASD and told not to drink, I would have done so, or at least asked for help… FASD is out there. It needs to be identified much sooner. Early diagnosis and support will help to prevent children being passed from pillar to post in our health and education systems. I still find it astounding, the lack of knowledge amongst mental health workers, doctors and nurses…. Every parent I speak to about my son’s diagnosis is shocked! ‘I’ve never heard of it,’ they say. ‘I didn’t realise alcohol did that.’ You see a glimmer of realisation cross their face as they recollect their behaviours in pregnancy.”
Dear you,
Before I start, I am sending one huge empathetic hug. A hug that I needed 10 years ago, and a voice in your head that is saying, “ please trust me, it really is going to be ok!” here is why.
I have sat in the chair that you are sitting in right now. A multitude of emotions screaming in my brain. Shock, relief, horror, sadness, guilt, shame, regret, anger…
I could go on and you know I could, but we, the birth parent of our beautiful child who has just been handed the one diagnosis that actually makes sense to us, FASD, Fetal Alcohol Spectrum Disorder, have to settle down with this news, digest it and ask ourselves “what now?”
I’ll tell you “what now?” Now is where you make sense of your child’s behaviours. Now is where you go “YES THIS FITS, AT LAST. “Now is where you learn. join groups and research. Now is where you start paving the way for your amazing child to be the best that they can be.
Just know that the diagnosis FASD does not render your child a ‘statistic’ and it does not leave you with a future of remorse and guilt. This diagnosis is the door to finding your child’s talents, their ‘thing’ if you like. This is where you become the leader and stand in front of the educators who are saying “it’s the parenting style, it’s just bad behaviour, it’s a choice,” and you tell them, “listen to me, this is what my child needs, and if you will not provide it for them, I will find someone who will.” This is where you put your guilt to bed and instead, turn in into pro action, not re action.
This is also where you find an understanding ear for yourself, you need it! To help your AMAZING child, you have to take time to understand your regret. Regret will not move us forward and regret will not change the next step. So help yourself to help your child which will help you. In turn, you will help all those that have been misunderstanding your child and judging you. You will be educating them in FASD. Stand strong, stand firm, and stand proud. It hurts. I know, my tears have been many and my pain deep, but, those tears DO turn to tears of pride when we see our weakest moments turned into our strengths and our FASD becomes a future not a failure.
With compassion, respect and understanding
Jan Griffin, birth mum to my amazingly talented son Rossi.
The National Organisation for FASD, The Priory, High Street
Ware, Hertfordshire. SG12 9AL
England
Helpline: 0208 458 5951