A Unique Child: Inclusion - Supporting ... May

Stacie Lewis contacted more than 50 childminders and nurseries before finding a nursery that would take her daughter May, who has severe brain damage. May's entire brain was deprived of oxygen at birth - a condition known as hypoxic ischemic encephalopathy - which has left her with cerebral palsy, epilepsy, limited vision and unable to sit up without support.

'I had nurseries tell me that she would have to go on a waiting list, and I would later find out they didn't even have a waiting list. One told me they would have to prioritise May because of her special needs and that would be unfair on the other children at the nursery,' says Ms Lewis. 'These nurseries make these decisions without meeting May and without spending time with her and without realising how lovely and wonderful she is. It was really tough.'

Then she contacted Dulwich Day Nursery, part of the Asquith day nurseries chain in West Dulwich, London. 'Their attitude was so different. I think a lot of it had to do with the manager at the time, Michaela Waitman, who has now moved to Battersea Day Nursery. She had such a great vision for the nursery and she was so enthusiastic, it was contagious.'

For Ms Waitman, it was simple. 'Every child has the right to be included,' she says. 'When Stacie came to me, I was horrified to hear that she had contacted so many childminders and nurseries and these childcare professionals didn't want to take her.

'I think there is a real fear thing over children with special needs. There is, of course, a lot of paperwork that comes with caring for a child with special needs, but May is an absolute pleasure to have at the nursery.'

Staff preparation

May started attending Dulwich Day Nursery when she was ten months old. All of the staff have first-aid training, and when May arrived they all underwent SEN training.

May has regular seizures, but she doesn't lose consciousness when having a seizure and doesn't need to go to hospital, so the staff were trained in how to cope with these events.

Her keyworker Natalie Watts explains, 'I just hold her close and sing an alphabet song to her, and she comes out of it.'

'In terms of the environment of the nursery, we had to make sure there were plenty of soft cushions around her so she doesn't come to any harm if she is having a seizure,' says Ms Waitman. 'The nursery is in a converted church and we had ramps already, and the majority of the nursery is on one level.

'May has limited vision but she is very reactive to light, so we bought a sensory tent with a UV light that has fluorescent toys in. She loves it. We also bought one of those footprint mats that make sounds when you press them.'

May's physiotherapist trained the staff to do a routine of exercises and stretches with her during the day, as well as working with them on a risk management assessment of the setting and a care plan for May. Staff also had to devise her Individual Education Plan.

The nursery also collaborates on her care with a number of professionals from outside agencies, including a speech and language therapist, a physiotherapist, an occupational therapist and a visual impairment specialist.

Daily Liaison

When Ms Lewis drops off May in the morning, she has a chat with her keyperson about how she slept or whether she is teething.

'If she is not feeling well or she is really tired, she is more likely to have a seizure,' says Ms Lewis. 'I always get a report at the end of the day as to how well she ate and what she did. It is nice, as they are always so pleased with May and are always bragging about her progression.

'The staff at the nursery have a really great attitude towards May. She can't support herself and she can't sit up and she can't feed herself. The staff have to do everything for her.'

One thing that the nursery staff are not involved with is the medical side of May's care. Her mother gives May her medication at home.

Involving the Children

May is now two years old, so many of the children have grown up with her. 'She really likes hearing the sound of the other children and they are gentle and sweet with her,' says Ms Lewis.

The other children are involved as much as possible in looking after May. They help her to stretch her fingers or mash up her food.

May recently moved from the baby room to the toddler room. 'With some of the children toddling around and because of her needs, we do have to watch all the time to make sure she is kept safe,' says her keyperson.

Funding battle

May had been at Dulwich Day Nursery for only a few months when Lambeth Council cut her inclusion funding, which paid for 15 hours of one-to-one childcare.

'Lambeth Council said that because she is under three years old, she was too young to be statemented and they were going to take away her inclusion funding because of budget cuts,' says Ms Waitman.

Determined to keep May at the nursery, Ms Waitman appealed to Asquith chief executive Andy Morris, who agreed to fund the one-to-one care while the nursery sought alternative funding. A few months later they were able to secure what they needed.

'I cannot stress enough to other nurseries - if the local authority says no once, you have to keep knocking on the door. Children don't have a voice and you are that voice,' says Ms Waitman.

Mr Morris adds, 'I wasn't about to let May leave the nursery. When a local authority says no, somebody has to say yes, and that was going to be me. You can't turn away a disabled child. I have a brother with Down's Syndrome, so I am used to dealing with local authorities.'

May's parents are now applying for a statement of special educational needs, as it will make it easier for them to apply for funding.

Inclusion benefits

The fact that May has been able to attend a mainstream nursery is very important to Ms Lewis. 'When you know your child is going to be dependent on other people for the rest of their life, you want to be able to give them that little bit of independence. They treat May like the other kids in the nursery. She is included in all the activities. If they are doing circle time, a member of staff will sit with her on their lap. When the kids are playing with the sand, the staff put May in the sandbox and take off her socks and shoes so she can feel the sand on her toes.'

Ms Waitman quickly discovered that May loved messy play. 'We didn't want her to feel left out, so the staff sit on the floor with her while she does messy play.'

When she started at the nursery, Lambeth council provided May with a chair which was adult height. She is now a toddler, and the council has provided her with a new chair so she can sit on a level with her peers.

Ms Lewis works part-time as a teacher in a secondary school. Having May in nursery allowed her to return to work. It also means she is not solely responsible for May's needs any more. 'The fact that other people help out as well is a big relief,' she says. 'May is very sociable and she loves cuddles and attention. She is so happy at the nursery.'

Andy Morris thinks having May in the nursery has been very beneficial for the staff and the other children.

'It teaches the staff and the other children about disability,' he says. 'I was at the nursery one day when May was getting distressed and hyperventilating and started to fit. The staff immediately started singing and so did the children, and she calmed down. It was incredible to watch.'

MORE INFORMATION

• Disability charity Scope, www.scope.org.uk

• Stacie Lewis's blog on Mama Lewis and the adventures of the half-brained baby can be found at mamalewis.wordpress.com

• Contact a Family, a UK charity for parents with disabled children, www.cafamily.org.uk

• Small Steps, School for Parents helps parents to help their own children who have cerebral palsy or other forms of motor and sensory impairment, www.smallstepssfp.org.uk

• What's Going On In There? How the Brain and Mind Develop in the First Five Years of Life by Lise Eliot