A Special Guardian, who cares for a child with FASD (Foetal Alcohol Spectrum Disorder), considers this condition and reflects on some of the challenges he has faced to get support.
FASD cannot be cured. The damage done cannot be reversed. The effects can be wide ranging and varied, and the level of the symptoms will vary from child to child – as drinking alcohol through any of the stages of pregnancy can affect the unborn child. The important thing to note is that no two individuals with the same contributing factors will present in the same way, which makes the condition broad and challenging to say the least.
The facial features of FASD/FAS are not always present and only occur if drinking is excessive in the middle section of the pregnancy. These facial features include a thin upper lip, smooth philtre, smooth broad upper nose, narrow eyes with extra folds, protruding ears, large forehead, and smaller than average head. An affected person may have all or none of these features, which can also be explained by family genetics. The features are normally more pronounced at a younger age and as children grow into teenage years they become less pronounced.
It is the hidden or none physical facets of the condition that can cause the greates challenges to individuals with FASD and those caring for them. Common factors include: learning difficulties, poor self regulation, poor appreciation of safety or danger, truth or untruth, reality or fantasy, poor awareness of time, lack of focus and concentration, poor attention, constantly on the move (fidgety), poor numerical abilities and a mental age that is younger than the chronological age.
Current prevalence is estimated at around 1-2% of children affected nationally, although this is likely to be an under estimate as it is based solely on diagnosed cases. Unclear government guidelines about alcohol consumption during pregnancy have not assisted and there are regional variations with higher levels where there is a strong drinking culture – in Scotland and the North of England prevalence is estimated to be 5-6%. It is estimated that about 1 in 3 previously looked after children (children who are either adopted or in special guardianship), have FASD.
Obtaining a diagnosis is not straightforward when there is a lack of understanding on the part of professionals and overlap with other diagnostic conditions with similar outward signs including: Autism, ADHD, and Attachment Disorder. It may take as long as four years to get a diagnosis of FASD. Unfortunately this diagnosis does not mean there is any treatment provided and professional understanding and support to care givers may be none existent or extremely poor.
Training and understanding area varies considerably. Some LAs have preventative training and educational programmes about alcohol consumption during pregnancy aimed at girls and young women, whilst others adopt a ‘head in the sand’ approach, with no training or awareness/prevention programmes, and poorly trained social care professionals.
Special guardians and adopters may lack vital information about the child’s history, and this lack of knowledge can be extremely problematic. There is a real risk that with such poor understanding on the part of professionals, and lack of support for the parent or carer, that the child may re-enter care – with all the added trauma this sort of family loss brings upon a child or young person. We need to be supported by professionals with understanding and knowledge of the impact of FASD, who are aware of the child’s history and keep us properly informed about it. Too many seem to be failed in this respect.
Normal parenting methods may not work for children with FASD and if there is a lack of knowledge or understanding about the condition on the part of the LA/social care, the child and family are indeed put at grave risk. This was sadly my experience. The people that should have helped us, let us down so badly. Allowances were not made in regards to my childs FASD, which has had a tremendous impact on family life. Asking for help did not have a positive outcome for my child, or us as a family. I hope the situation can improve. Children with FASD should not lose their family to be raised in foster care or institutions, because of a lack of knowledge and training on the part of social care professionals, and a lack of commitment and willingness to provide support to special guardianship and adoptive families – where prevalence is known to be high for this condition. A blaming approach is not the answer and legislation must better protect the rights of FASD children and those who provide them with a permanent family.
I found out about FASD through joining the FASD Network UK, which proved such a valuable resource. Please click here to go to their website
Whether FASD was an issue or not, the support I should have had, according to legislation and guidance, was simply not forthcoming to me as a special guardian. Through the various peer support groups I belong to I am aware that our case is not unique and many special guardianship families struggle to achieve the support that they should be entitled to recieve.
A new report by the Local Government and Social Care Ombudsman has revealed comprehensive failings for Special Guardianship families with a great number of complaints and 70% of them upheld.
It is the knock on effect of lack of support and training that needs to be considered – and swift action must be taken. Professionals providing support to special guardianship and adoptive families must have training in FASD, and divulge any information about alcohol consumption during preganacy that is known to have occurred, or families will be put at risk. Legislation does not protect children with FASD and too many are going back into care when support is not forthcoming and challenging behaviours, resulting from the child’s condition, are viewed as the child being ‘Beyond Parental Control’. Being in court when a local authority tries to prove this ‘threshold’ to obtain a Section 31 Care Order, as a parent or carer of a child with a diagnosed medical condition and poor mental health, is a terrible experience I would not wish on anyone.
Please sign our petition to protect the rights of children with FASD. The sort of draconian removals we are seeing with previously looked after children, must be stopped, and there must be better support and training for professionals supporting these children and families. Moving, or re -moving, the child does not solve the problems and creates new ones for all involved. No child should lose their right to family life because they have a medical condition that is incurable, knowledge about it is poor, and there is a ‘head in the sand’ approach where blame is passed onto the caregiver due to outdated legislation developed 20 years before the Special Guardian Order came into existence, and prior to so much social change.