Inclusion - Supporting ... Lucas
Monday, October 31, 2011
How one nursery and key worker care for a child with cerebral palsy is described by Sue Learner.
Three-year-old Lucas, who has cerebral palsy, inspired his key worker to the extent that she jumped out of a plane for him.
Georgina Slater, deputy officer in charge at Tiny Teddies Nursery in Coventry, jumped out of a plane at 13,000 feet in a tandem skydive, to raise money for Lucas Holyfield's long-term care.
'I really wanted to do something for Lucas as I am so close to him,' says Ms Slater. 'I have always wanted to do a skydive, but never had something that really pushed me to do it. We also held a horse riding event to raise money for him - and I am petrified of horses.'
Lucas suffers from spastic dilegia cerebral palsy, which affects his lower limbs and slightly affects his upper limbs, making them stiff and contracted.
This condition is caused by damage or faulty development in a part of the brain while the baby is still in the womb or during the birth.
This abnormal development or injury disrupts the nerve signals between the baby's brain and their muscles, leading to problems with movement, posture and co-ordination.
About 1 in 500 babies born in the UK have cerebral palsy. Lucas, like many diplegic children, was born prematurely.
Lucas has been attending the nursery in Coventry Business Park since he was 19 months old.
'There was never any question that we wouldn't take Lucas when he came with his parents to visit the nursery,' says Ms Slater. 'His cerebral palsy affects his lower limbs mainly and we have to do exercises with him and have special equipment for him, but we would never turn a child away because of their disabilities.'
There was already a child at the nursery with a disability and Lucas's mother, Louise Syme, says, 'This made a big difference in our choice, as it showed that the staff had experience working with a child who has disabilities. They can't do enough for him at the nursery, and we really appreciated Georgina doing the sky dive to raise money for Lucas's long-term care.'
Lucas's physiotherapist ordered the same equipment for the nursery as he has at home. All the equipment is provided by Coventry and Warwick Hospital. At the nursery, he has a walker, a standing frame and a chair that can be adjusted to different heights.
Lucas's physiotherapist came and did a risk management assessment with the setting and worked with the staff to devise a care plan.
As his cerebral palsy affects his lower limbs, the physiotherapist visits the nursery on a regular basis and shows his key worker, Ms Slater, what stretching exercises to do with him to help loosen his muscles and improve the strength in his legs, and how to position his joints.
Physiotherapy is fundamental to managing cerebral palsy and can help with posture and movement.
Ms Slater says, 'As his key worker, I then show the other staff so they can work with him as well. The physiotherapist also showed us how to use the walker and how to put special splints on Lucas's legs.
'For an hour every day, we have to strap Lucas to a standing frame to keep his legs and his back straight. This encourages balance and stimulates the normal development of bones and joints in the legs.
'He doesn't like going in the frame, so we try to do it when he eats lunch or when we are doing activities such as building Lego at the table, since he has got lots of things to occupy him and the other children can sit with him,' says Ms Slater.
The nursery meets regularly with a number of professionals from outside agencies to discuss Lucas's development. These include a physiotherapist, an occupational therapist and a health visitor.
LIAISING WITH PARENTS
Every morning, Lucas's key worker speaks to his parents and finds out how he has slept at home.
Lucas's mother says, 'Sometimes Lucas has problems with his stomach and that can disrupt his sleep, so I will update the nursery on how he is feeling.'
The key worker also needs to know if his splints are hurting him so she knows whether she can put the splints on that day. The splints are used to improve tone, posture, control and patterns of movement.
'The children all know that Lucas can't walk and that he needs this other equipment to help, but they are not fazed by any of it,' says Ms Slater. Indeed, she believes that having Lucas at the nursery has been extremely beneficial.
'It has been so good for the nursery as it has made the staff realise in terms of taking children with disabilities that we can do it, and it enables the other children to learn about children with disabilities which is very important for them.'
'Lucas joins in with everything we do and is a really bright boy,' says his key worker.
'When he first started attending the nursery, if we were doing circle time and sitting on the floor, he would have to sit in a certain way which wasn't very comfortable. So we got him a wooden box to sit on so he can be at the same level as the other children and be comfortable.
'He has his own chair so he can sit and do activities at a table and eat with everyone else.
'To get outside he has to climb down one step, so we always keep an eye on him when he does that and give him help if he needs it.
'Lucas recently had an operation which means he can get around more and hopefully he will be walking soon,' she adds.
DISABILITY ADVICE FOR EARLY YEARS SETTINGS
'Children with cerebral palsy can gain enormous benefits from enjoying their early education and playing in mainstream settings,' according to Lindsay Brewis, early years advisor for Scope, a charity that supports disabled people and their families.
She has some practical tips that nurseries may find useful:
- Useful hand function is difficult for many of the children with cerebral palsy, and impossible for a small number. Where hands are going to be used, you should do all you can to maximise hand use and improve the child's abilities.
- Extending a finger to point is the usual goal of hand function. With a finger or thumb or knuckle, the child can access pictures, words and technology, so if this is a possibility it is well worth pursuing it. But it is not worth doing if the child will have such serious difficulties that communication becomes impossible. Rhymes that personalise each finger, such as 'Peter Pointer', help a child to think about them as individuals.
- If the child finds it difficult to relax their hands, practise opening hands in various substances such as warm water, jelly, cornflour paste, sand or lentils.
- Get the child to do grasping and releasing - for example, practise grasping a sponge ball.
- Blow bubbles for the child to pop or catch them on the bubble stick and encourage an outstretched hand.
- Encourage the child to turn the pages of a book while reading. If you are using a picture book with stiff pages you can attach a cardboard tab with a piece of sponge stuck to it so that the child finds the pages easier to turn.
Scope and Hemihelp, a charity for children and young people with hemiplegia, a form of cerebral palsy, have drawn up the following inclusion guidelines for early years settings.
- Some people find it tempting to over-protect a disabled child. It is easy to make assumptions about capabilities.
- Understand the needs of children with cerebral palsy, both in terms of the condition and how it might affect a child's learning and development.
- Ensure that the environment and activities provided are accessible for children with cerebral palsy.
- Know where to go for further information and advice.
- Have a pro-active, planned approach to inclusion generally, rather than reacting to individual referrals.
- Take into account the needs of disabled children when making changes to the environment or buying equipment or furniture.
- Review policies and practices to ensure that they do not discriminate against disabled children.
- Focus on the free aspects of childhood, which can be easily overlooked among all the special treatment that a disabled child might receive.
- Address the mistaken belief that all children with cerebral palsy need one-to-one support.
- Look at each child as an individual and not just a 'batch of needs'.
- Disability charity Scope, www.scope.org.uk
- Contact a Family, a UK charity for parents with disabled children, www.cafamily.org.uk
- Quest 88 designs and manufactures equipment to assist children and adults who have a learning or physical disability, www.quest88.com.