Supporting carers of children with FASD: Parents for Children's FACT project

Parents for Children is a charity with a 31-year history of seeking to place children with very special needs – including children with Foetal Alcohol Spectrum Disorder (FASD) – into permanent families. Of all the children who are placed in foster or adoptive placements, a high percentage has come from families where drugs and/or alcohol are misused.

We know that parenting a child with FASD brings a number of challenges, and that information, support and stability are the keys to success in raising a child with FASD. It is vital that potential carers learn about FASD to help them understand how the child is affected, which parenting strategies work best and how to get the best possible services and support. Through our own research and pilot project it has become clear that many of the children who are referred with learning disabilities and complex medical needs were born to mothers who abused substances in pregnancy. As a result of this knowledge Parents for Children has taken a leading role to establish and research the real needs of these children.

In July 2008, Parents for Children launched its Foetally Affected Children's Team (FACT) Centre of Excellence – the first of its kind in the UK – to which children can be referred. Its aims are:

• to use a multi-disciplinary team to identify the needs of foetally affected children

• to consider the long-term planning, including kinship options, and where appropriate to recruit and prepare families for the child

• to offer specialist support packages for children and families, geared to their individual special needs and learning processes

• to review annually the children’s progress and support needed by their families within the Parents for Children summer family camp

• to disseminate our learning via our conference and training programme, and relevant publications.

Our support packages are based on an advocacy model, i.e. helping carers to help themselves by arming them with knowledge and teaching them to become ‘the external brain’ for their child, who is likely to have difficulty in communicating their needs to the world around them due to their organic brain damage. Our team will provide the necessary tools for appropriate decisions and action in all areas of a child’s life, at home, school and in the wider environment. Regular support groups have been set up.

Many children with FASD do not have an accurate diagnosis and their difficulties may not be apparent. It is vital that prospective adoptive or foster parents request a copy of a child’s complete medical and family history. However, we know that these records may not give the full picture and it is helpful to ask specific questions about the developmental history of the child, including any delays and possible prenatal exposure to alcohol and drugs.

If you are armed with knowledge about the needs of children who have been exposed to drugs or alcohol before birth, you can request information on services and resources to meet their needs in both the short and long term. It is also important that prospective carers are prepared for, and able to, manage the uncertainties of caring for a child who has been exposed to drugs and alcohol in pregnancy.

Taking care of a child with FASD offers many rewards as well as challenges. Children with FASD have many strengths, for example, they often tend to be creative, determined and eager to please. We know that these children respond extremely well to a structured, consistent environment, close supervision and clear communication. These children merit recognition of their potential long-term vulnerability, and need for a stable home environment, with carers who are willing to accept and work with their disability.

With support and recognition, and regular monitoring and reviewing of their needs, these children are far more likely to achieve their potential. Whilst referral for assessment and our multi-disciplinary specialist support systems will require funding from local authorities, all families are welcome to join our regular support groups.

Dr Mary Mather (Medical Director, FACT Project)
Jacqui Le Vaillant (Project Manager)
Edwina Brocklesby (Director, Parents for Children)

Parents for Children are holding the following conferences on children affected by maternal substance misuse:

• 24 February 2009: Double Jeopardy? Finding and Supporting Families for Foetally Affected Minority Ethnic Children, London

• 17 March 2009: Violence of the Streets: The Cycle of Drugs and Alcohol in Pregnancy, Edinburgh

• 23 March 2009: Alcohol & Adolescence: Ways Forward for Foetally Affected Teenagers of their Mothers’ Substance Misuse in Pregnancy, Belfast

• 26 March 2009: The Foetal Impact of Alcohol and Drugs in Pregnancy: Why do we Deny the Risks?, London

For further details and to book, visit their website.

Originally published in the Be My Parent newspaper in January 2009.

This article is published with the kind permission of the people involved. You may download it for your own reference but if you wish to use it for any other purpose, please contact Be My Parent for authorisation: Be My Parent, BAAF, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Telephone: 020 7421 2666/5/4.

Last updated: 08 January 09

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