Today we launch www.FASD.me an interactive website for children and young people (anyone really) affected by Fetal Alcohol Spectrum Disorder (FASD).
I believe that it is a truly unique resource which will allow people who know that they have been affected by alcohol in the womb or think that they have to understand more about their condition.
It has been written in collaboration with a small team of experts and affected adults and young people. Those adults and young people have driven the development of the resources and ensured that what is produced meets their aspirations and needs.
The site aims to show what our children and young people can and do achieve with and change the often-negative narrative and expectations associated with being identified as being affected by FASD. The website will empower those affected to take ownership of their condition, build their self-esteem and allow them to develop personal strategies to allow them to achieve.
I believe that it is truly a game changer.
It sits within a suite of other national developments funded by the NHS and collaboratively produced by National FASD (www.nationalFASD.org.uk) and the Seashell Trust (www.seashelltrust.org.uk) including one and three day training for professionals and a mass of new resources. It will complement the launch of the Clinical Care Standards for FASD by NICE in the UK (https://www.nice.org.uk/guidance/indevelopment/gid-qs10139) in early 2021.
This has been a long time coming, but hopefully it’s been worth the wait.
I started my journey learning about FASD in September 2003 when a sibling group of girls came to live with us. That journey has been developed by everyone who I have meet who has been affected or is living and supporting affected individuals.
To say that this changed my life would not be an overestimate. I have changed jobs on a number of occasions and living with affected young people has challenged everything that I thought that I knew about child development, education and the care system.
I have been privileged to work with some exceptionally talented individuals with a wealth of experience, but more importantly commitment to making a real difference to the quality of life of thousands in our communities. This has been a truly collaborative experience where the sum of what has been produced is far, far greater than our initial expectations.
My contribution to www.FASD.me draws heavily on my experiences living with affected children and young people as well as being responsible for the education of many affected children in care in Peterborough. It reflects the collaborative work that I was involved with in Bedfordshire through the Bedfordshire Schools Improvement Partnership (BISP) where we were able to develop next best practice on student voice and leadership throughout England. It has drawn together possibly the last 20 years of my professional career in a way that I could only dream of even 6 months ago.
Today is a day to be both excited and proud of what we have achieved. Today isn’t the end, but a steppingstone for bigger and better things, but that is for tomorrow. Today lets just thanks everyone who has contributed in any way. You should all be very, very proud of your achievements.