Today Julia Brown, Founder and CEO of the FASD Trust, tells as about adopting a child with FASD and how her and her husband came to start the FASD Trust.
Did you watch the recent C4 programme, “15,000 Kids and Counting” following the care proceedings and adoption process for various children and families? Our friends were equally split between those who could not bear to watch their own emotions reflected back to them from the TV screen and those like us who became “hooked”!
However, the main thing that struck my husband and I was how the majority of the children featured were clearly affected by FASD (foetal alcohol spectrum disorders) just like our own kids.
For those of you who are wondering what FASD is, it is a range of mental and physical disabilities that a person is born with due to pre-natal alcohol exposure.
In other words, their birth mother was drinking alcohol whilst pregnant. Alcohol, for the foetus, is an interference that disrupts normal development, particularly of the brain and central nervous system. Unfortunately, there is currently no cure for FASD, meaning it is a lifelong condition. It is neither, as one person optimistically suggested on the programme, something that you grow out of nor improves with age. (The latter is something we can testify to as we parent a 15 year old with FASD whom we adopted when she was a tiny baby.)
Historically, we have both as a society and in social work practice, focused on the illegal drug intake by birth parents, over-looking the more dangerous substance, as far as the long term well-being of the child is concerned, which is alcohol. Also, drugs and alcohol go together like fish and chips, so if you have adopted a child who has been exposed to drugs during pregnancy, it is highly likely they will have also been exposed to alcohol.
For Simon (my hubby) and I as we watched scenes of an eager young couple adopt a child with FASD, and heard them talking excitedly about plans for nursery and school (yes, I can hear all of you groaning too, whether your child has FASD or not!!!), it reminded us forcibly of our naivety as we brought home our first tiny bundle and had the same dreams and plans….
I remember despairingly asking friends, “At what age do they learn to eat without mess, getting all the food in their mouth not around it or on the floor?” The answer, by the way, is never; Simon has just scrubbed the carpet after Dinner tonight!
Our daughter was delayed walking but once she got going was so fast that I can still run in high heels. Her speech was delayed, but once she started she has not stopped. Everyone is immediately her best friend, she has no concept of time and she likes paying for shopping, innocently asking if she really may keep the change!
By the time our daughter was 3 and a nursery headteacher had gently informed us that they were, “unable to meet your daughter’s significant needs”, we were forced to begin to recognise that this was more than just, “global developmental delay due to a not very great start in life”.
Aged 5, she was diagnosed as having Foetal Alcohol Syndrome (FAS) and then the doctor shook my hand and we went home. Simon and I sat in our living room and said, “Now what do we do?” That question began our next journey, to find information on FASD and practical support, which we discovered was in very short supply as we lived in the UK and not Canada or the USA!
The upshot was we decided we could not be the only parents in the UK with a child affected by FASD, and set out to find others.
As we discovered them, we began with a small support group and then a local training course for the teaching staff at the school our daughter was attending at the time. Thus, The FASD Trust was born.
What began as a “sideline” is now a full time occupation for us both. That first FASD Trust support group has now grown to be a national network of groups.
The initial training course for professionals evolved first of all into the UK Medical & Healthcare Professionals Forum on FASD, which drew up a Consensus Statement on the Recognition, Diagnosis and Management of FASD, which we published in February 2013. Over 70 medics from around 36 NHS Trusts contributed to the Statement.
We have since launched the Education Forum and the Social Work Forum. We are pleased to be working in partnership with organisations such as BAAF, BASW and Adoption UK, amongst others. Adoption Preparation on FASD and post adoption support packages for those adopting children with FASD are two of the projects this latter forum is currently addressing, whilst the Education Forum is working in partnership with schools to improve the educational experience and outcomes for children with FASD.
However, much of our work is about providing practical, personal support to those parenting children with FASD on a daily basis.
We have a telephone helpline. We run workshops, “Parenting the FASD Child”. We have produced two resources to explain to children about FASD, “My Name is Sam” and “All About Me.” A parenting book jointly written by myself and Dr Mary Mather is due out soon. We have a Facebook Group (Friends of the FASD Trust) and a closed on line forum for carers (healthunlocked.com/fasdtrust).
But, as we watched the TV and reflected back to the day we brought home our delightful bundle of joy, when had no idea of what life parenting her would have in store for us, no idea it would lead us to meeting the Prime Minister, to write books, to be exhausted, frustrated and to be endlessly enchanted by her latest question, saying or exploit, we agreed that we would, if we could turn back the clock, still choose to have her as our eldest child!
Julia Brown, Founder & CEO – The FASD Trust