When touch is one way to talk
Finding the starting point in teaching children with profound difficulties is the key. Karen Gold reports
Up to 27 different professionals may be simultaneously involved in the care, therapy and education of one child with profound and multiple learning difficulties, according to a survey by the Royal National Institute for the Blind. Interacting with 27 adults would confuse anyone. For a child or teenager on whom the outside world impacts by apparently random sensory intrusions, a sudden sound here, a touch there, a pain from nowhere, this array of faces, voices and personalities must seem inexplicable.
SEVERE OR PROFOUND?
Life would be simpler if there was a neat line dividing children with severe learning difficulties (SLD) from children with profound and multiple learning difficulties (PMLD). Pupils with SLD will need support throughout the curriculum and their learning lives. They will need to be taught self-help, independence and social skills, which they may never fully achieve. They may have co-ordination, mobility or perceptual difficulties.
They may read a little, write less, mostly, but not always, be able to hold a simple conversation.
Those disabilities seem, in an everyday sense, profound. Which makes it hard to grasp that for some children, the difficulties are far greater. For the most severely disabled children - roughly two children in 100 have SLD, two in 1,000 have PMLD; both groups are increasing, probably due to rising survival rates for very premature andor damaged babies - holding a conversation in words will never be an option.
They may be blind, or deaf or both. They may express themselves by crying out, or smiling, or self-harming. They may never express themselves. The closest we can get to grasping their intellectual world is to approach it via what we know about the development of babies from birth to the age of one.
CURRICULUM OR CHILD FIRST?
A 10-year-old or 18-year-old with PMLD is not a baby, and there are pitfalls in the comparison. Concern about a potential lifetime diet of passivity and nursery rhymes was one reason why, in the 1990s, campaigners stressed that every child should be offered a learning curriculum, and equal right of access to the national curriculum.
But, says Penny Lacey, senior lecturer in education at Birmingham university, "How can you talk about history and geography to children who don't even know they are alive?"
Even when children are disapplied from the national curriculum, as Ofsted advice to PMLD schools suggests, we have to start from where they are:
"Nearly everybody works by having a story and trying to use it to fit the child's disability. I think you should start the other way: what's this child doing? What can I do with that to enable them to understand cause and effect and intentional communication?"
For these, she argues, are the key developmental milestones in infants, and are what teachers of children with PMLD should focus on and aim to achieve.
The youngest infants, she points out, have no perception of themselves as separate beings. Having developed a sense of self, the baby then becomes aware of its own power to be a cause and achieve an effect. It shakes a toy and a rattle results.
If a child with PMLD can achieve this "cause and effect" stage, their world will be transformed, says Dr Lacey: "If you're not aware that you have a separate existence, then you can't understand that you could have something like a choice. If you think you can't affect the world, you give up.
Once you understand cause and effect, once you can anticipate, take turns, once you can generalise, then the world is your oyster."
Computer software exists to encourage cause and effect learning, but it is less flexible than human beings. If a switch fails, or the pressure is slightly wrong, the child fails to get the reward. Whereas a person can react to the smallest effort.
For that reason alone, apart from the infant development parallel - we wouldn't leave a baby with a computer - work with PMLD children is highly intensive. To emerge from their own world, these children need 1:1 attention of a very specific kind, says Dr Lacey.
At St Margaret's, in Surrey, a special school for children with PMLD run by the Children's Trust, staff work with "a completely individualised approach", explains speech and language therapist Helen Frances, describing work done over a year with 15-year-old Sarah. When she arrived at St Margaret's, she was startled by any sound or contact and would smile only at random.
Every staff member used the same "touch cues" for Sarah: a finger on her ear to tell her it was time to listen; a stroke on the shoulder to say "time to go". After a year, Sarah almost ceased to startle, reacted with a scale of pleasure to different music, responded and took turns to communicate using a headswitch in a small group.
Turn-taking is another fundamental step to communication, says Dr Lacey:
"Parents spend a lot of time interpreting what the child does as communicative. If the baby sneezes, the parent will say `What was that noise?' The baby leads, the mother follows.
"With the most profoundly disabled children, we have to use this turn-taking to help them understand they can have an effect on someone else. What's most important is the "burst-pause rhythm": you have a burst of activity, then there's a pause for the child to put their bit in. I've had a conversation with a child where I tapped her foot and she waggled it.
I've blown on a child's face and they've reacted by smiling, giving me eye contact. This is what conversations are about. This is teaching the child to be a communicator."
ASSESSMENT FOR PEOPLE
Very close observation of the child is the key to finding these starting points, experts agree. Until recently, the main tools for describing a child's attainment have been the P scales created by the Qualifications and Curriculum Authority for children unlikely to reach national curriculum level 1. Although helpful, these are not fine-grained enough.
More tailored assessments are now arriving. The Welsh curriculum authority, ACCAC, is trialling a developmentally-based package of activities and assessment tools, Routes for Learning, expected to be published next year.
Also next year, the Children's Trust will publish St Margaret's curriculum, with its four-part assessment matrix "working towards", "evidence", "achieved", "generalised" - and five-part learning focus: sensory-cognitive, communication, social, motor and life skills.
It is hard to say who needs these packages more: the children whose tiny moves towards communication must be supported by detailed planning and observation, or the staff who need mutual consistency, achievable goals, a sense of teamwork and encouragement.
SPACE, EQUIPMENT AND INCLUSION
Although the facilities and equipment shopping list for PMLD children is endless - physio space and kit, a large toilet area, ramps, wheelchair space, specialist computer accessories and software, a multisensory area full of lights and sound - one of the most important items is a digital camera and video for recording good days. Another is small private spaces to help children avoid bad ones. If a child cannot communicate, they become frustrated; if they are mobile, and large, they may be dangerous.
Several students at Hazel Court, a specialist SLDPMLD school in Eastbourne, have their own private space, sometimes called their "office", where they can go when anger levels rise, says head Peter Gordon: "It's much better than them thumping you in the face because they can't cope any more and can't understand why you can't understand that."
Hazel Court is unusual in sharing premises with a mainstream secondary school, The Causeway. Some Hazel Court students attend some Causeway lessons. It is, Mr Gordon argues, an ideal solution to the still disputed issue of where these children should be educated: in special or mainstream schools.
Yet even in special schools, children with PMLD "spend a lot of time waiting in classrooms while other people do what is intellectually beyond them", says Dr Lacey. Whatever the school, says Institute of Education psychologist Dawn Male, success comes down to "teacher attitude. It's not how many assistants, how many ramps, it's an acceptance of difference and diversity and a move away from the `normalisation' model, because these kids are never going to be normal, and trying to get them to do what other kids do is nonsense."
It's a hard message, for schools and for parents. But dealing with these children is hard, says Mr Gordon, a parent of a 21-year-old son with PMLD, and no one gains by hiding it: "If we are feeding a youngster with PMLD in the dining room, they may be dribbling and some of the mainstream youngsters can find that difficult. We say that's fine, we've felt like that, sit somewhere else and in time you'll come to accept it."
There are hard decisions about an age appropriate curriculum. What happens when a 19-year-old wants to go out with a baby toy? "Part of their dignity is not being someone who is looked at all the time," says Mr Gordon. On the other hand: "If what they really want is Rupert Bear, we give it to them.
You can't deprive them. That would be cruel."
Under pressure to find quick solutions to these kinds of problems, particularly when they prompt the child into challenging or self-harming behaviour, teachers are tempted to locate the problem in the child's personality or syndrome, says Dr Male.
But, in fact, the environment or past responses may be causing the trouble:
"Instead of saying we're concerned about this child's behaviour so we have to stop it, teachers need to take a step back and say `Let's not look at the behaviour, let's look at what's on offer for the child'."
For potentially, adds Dr Lacey, that will be the most valuable lesson for everyone: "If you can teach people with profound difficulties to like being with people, to smile and give out a contented air, that person will get 2 million per cent more interactions with other people than if they are stroppy, bad-tempered and hitting out and nobody wants to go near. It's difficult to say that, but it's true."
TRAINING AND RESOURCES
British Institute of Learning Disabilities runs short courses for teachers and assistants: www.bild.org.uk
Birmingham and Manchester universities run MA courses, some by distance learning
P scales: www.qca.org.uk
ACCAC Routes to Learning, email email@example.com (published May 2006)
St Margaret's curriculum, email firstname.lastname@example.org (published spring 2006)
PMLD network: www.pmldnetwork.org