Raising awareness

"Other people have to be aware of what FASD is," says Elizabeth. "It´s very hard for Rebecca at school if teachers don´t know her – in her report it said that ´sometimes she pays attention, sometimes she doesn´t´! However, some teachers are fantastic – one picked up on it straight away, and told me he has to make sure she knows what she´s doing."

When Rebecca came into Elizabeth and Phillip´s lives, they knew nothing about FASD. "We had adopted a little girl previously, and were approached by a social worker about another child, a typical one-year-old who needed a new family. On Rebecca´s Form E, all it said was that her mum and dad did drink, so we tried to find out as much as possible about the implications."

Despite the couple´s efforts to find out more information, the agency could not tell them anything concrete. They found there was little awareness of FASD in the UK in general. "At the adoption panel, we spoke to the medical adviser and were told, ´what you see is what you get´," Elizabeth says. "We were shocked at the answer! But there was no time – we had to make a decision based on our instincts and were prepared to carry on."

Although they did not know what effects the alcohol could have on Rebecca, they looked out for signs. "She was very late speaking and didn´t always connect things together or follow instructions," Elizabeth says. "But we continued researching into FASD and supported her as much as possible."

Rebecca managed well until going to secondary school, where she found the first three years very hard. "She is a quiet child so teachers can think she is getting on OK, when in fact she has shut down or switched off as she needs more time to process things and cannot always understand what is going on," says Elizabeth. "She has short-term memory loss and, for example, has difficulty remembering to do her homework or to hand it in. And she´d rather do the detention than have a fuss made about it all."

This can make Rebecca frustrated, as she knows she can do better. Visual clues and practice can work well for her. "She did quite well in a recent mental maths tests after lots of practice at home, and the similar structure and order of mathematical questions can help. English is more challenging as it´s more abstract, so she is in a supported group," explains Elizabeth. "If she´s working in the familiar science room and the teacher is there, she can do well, but in an anonymous exam hall, she finds remembering things very hard." This is why the school is allowing Rebecca to take her exams in another room, which also means she can talk out loud and help herself to remember.

At home, Elizabeth has Q&A sessions about school to help Rebecca remember things. Rebecca will also try recording her lessons on a minidisk and will ask to have textbooks at home. In helping her daughter, Elizabeth will not go behind her back and always discusses issues with her, though "it´s so difficult to keep interfering when you have a teenager who is mature in so many ways."

Rebecca was considered too bright to go into the special needs department, and instead they track her progress based on reports from Rebecca´s parents. "But if there are no severe learning difficulties, special needs monitoring finishes by about Year 9, so you need to keep on at them," Elizabeth explains. "It´s no good waiting until your child really needs help." She is pleased that the Head of Year will also be monitoring Rebecca´s progress and speaking to all her GSCE teachers at once, so Elizabeth doesn´t have to speak to them individually herself.

Rebecca finds socialising difficult as a result of her hearing, but she now has a group of friends who know she is quiet, and so no demands are made of her. They send messages to each other via computer, which gives her time to think and respond, and they also meet up after school. She can have grown-up conversations with adults and, when visitors come to the house, she will chat to them about current affairs, such as the Iraq war.

However, the brain damage caused by the alcohol is permanent, and Rebecca will need strategies for everyday life, at school and later on. For example, when she looks for a job, she will have the help of a job coach and will need to develop strategies to carry out her work. "She could work well within the right environment," Elizabeth says.

Elizabeth knows how her daughter´s situation has impacted on her self-esteem. "She´s beginning to come through the hard times, though still doesn´t find it easy to ask for help following a lack of emotional nurturing before her adoption. Now Rebecca knows the school is helping her, she feels it is worth trying to get an education and she wants to get her GCSEs."

All names have been changed.

Originally published in the Be My Parent newspaper in September 2005.

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: 12 September 08

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