Zack’s story

Hayley has two children: Zack (7) and Sophie (13). Hayley volunteers with the Salvation Army and a community group run by Parents and Communities Together. She finds these experiences a “lifeline” because they give her a sense of purpose.

Hayley, Zack and Sophie like to feed the ducks and have lunch in the park together. The three of them also spend a lot of time with Hayley’s mum and dad.

Hayley is a survivor of domestic abuse, and the family have had to move around a lot. Their current council flat only has two bedrooms, which means Hayley has to sleep in the living room. They store most of their possessions at Hayley’s mum’s house, as the damp and mould ruins everything.

Hayley does not feel safe in their flat. She has witnessed drug runs, experienced several break-in attempts, and caught people urinating on their garden wall. She’s been waiting four years for the council to replace the damaged front-room windows, and to damp-proof the flat.

Hayley first became concerned about Zack’s behaviour when he turned 2. She thinks the lack of stability in the early years of his life might be a contributing factor: “He didn’t know whether he was coming or going.”

Hayley finds Zack’s behaviour draining and stressful. She tries to predict and plan ahead for different scenarios. There are many instances where they have been told to get off a bus or leave a shop because of how Zack is behaving.

Since Zack tends to go to sleep very late, Hayley doesn’t have the evening to catch up on life admin and housework, let alone get any “me time”. She tends to “stick to the same crowd” and avoids making new friends because she doesn’t want to have to explain Zack’s behaviour.

Sophie says that Zack’s behaviour can be “stressful, annoying and painful”. She does not get to spend as much time with her mum as she would like. Zack’s behaviour gets in the way of her doing her homework or getting enough sleep, particularly as they can’t close any doors because of the damp. Zack often comes into Sophie’s room to harass and annoy her.

Zack doesn’t get invited to other people’s birthday parties or sleepovers because of his behaviour. Hayley organised a bowling birthday party for Zack and none of his school friends turned up. Zack’s nan also feels that his behaviour gets in the way of her being able to get close to him, or to do fun things with him.

Hayley has found interactions with Zack’s school to be challenging. She has been asked to attend countless meetings about Zack’s behaviour and feels that staff, including the headteacher, often speak to her as if she is to blame. Zack’s current teacher understands Zack’s needs and how to manage his behaviour, but this is not representative of the whole school.

Ideally Hayley would like Zack to attend a SEN school. She speaks about her own experiences of school, and how her move from a mainstream school to a SEN one meant that she “flew through doors”, passed English and maths, and started doing vocational courses.

Hayley has not found the formal support she has received particularly helpful. Hayley visited the GP several times when she first became concerned about Zack’s behaviour – but was told not to worry. It was only when Hayley was at a stay-and-play session that one of the workers noticed how Zack could get angry quickly, and helped Hayley get a referral to Southwark Family Support.

Hayley is a qualified NVQ-level childcare coordinator who has a lot of experience working with children with severe special needs, yet she has been repeatedly referred to parenting courses. For the most part, these haven’t been helpful as Hayley feels that the facilitators don’t understand what life is actually like for parents.

Zack has also received support from CAMHS, which has involved joint sessions with Hayley and attending a sleep clinic. Some of the advice did not take into account their actual circumstances. For example, they suggested leaving Zack in a room on his own until he fell asleep, at a time when they were living in a one-bedroom flat. This would have meant not allowing Sophie to go to bed until Zack fell asleep.

Hayley really values the support she gets from her mum. Sophie stays with her grandparents at least once a week. This means she can get a bit of break from Zack. Sophie also has access to a mentor through a charity called Step Out. Every Thursday they go for dinner or to the park. It is an opportunity to “forget about everything”.

Hayley would like formal support to be more holistic and address some of the wider needs and issues that she believes can help explain some of Zack’s behaviour. This includes an improvement in their living conditions.