If you are a professional working with people with PMLD, there are some key issues that you need to consider:
- take time to watch, listen and learn
- think about other people
- make it clear why you're there
- be flexible
- be multi-sensory
- work at close proximity
- make time for reflection
- be person-centered
- change the space
- take risks
Take time to watch, listen and learn
The more time you have and the better you know each other, the richer the communication and therefore the experience. The longer you have to prepare for, and to actually work with, individuals with PMLD, the richer the experience will be for both of you. Work carried out over a whole day, or a week or a term, is likely to be far more effective than an hour-long performance – no matter how brilliant. Take time to get to know the individuals you are working with, and vice versa.
Think about other people
Most people will have a supporter or maybe even a member of their family with them. Use their knowledge of the person and how they communicate – the supporter may have ideas about how the person will join in or what they may get from a session.
It is also good to bear in mind that the individual may respond to you and to what they are doing in a way that their supporter may not have seen before. Equally, you may observe reactions and interaction that their supporter misses. This can be wonderful because it means that your efforts can lead to the people you work with being seen in a new light – freed, just a little, from the labels that are so often applied to them.
By looking at small movements and sounds that the child made we could effectively help them to really take part in what was going on.
Make it clear why you're there
If you are planning sessions over a period of time, can you give the person a clear indication that they are with you for a particular reason? For example, you may leave a card with your photo and something they can touch, like a paintbrush. They can then prepare for their time with you by looking at your photo and touching the brush while their supporter reinforces that "next we are going to be painting with X".
It is a good idea to have a clear idea of your goals for a performance or session, and a plan to show how you aim to achieve them. However, you must also remain prepared to depart from the plan in order to adapt to the different personalities you will work with.
Prepare your audience or participants, and the people who will accompany them, for the workshop or performance in advance. You can do this through a briefing, including training sessions, printed items, video, posters, session outlines and references to informative websites.
A great deal of work with people with PMLD takes place in the presence of others, so it is vital to develop the understanding and co-operation of family members, teachers and support workers. The attitude of these companions can have a significant influence on the reactions of the people with PMLD, and briefing them is a big part of getting their support. This can lead to suggestions for follow up activities, and ensure that a workshop or performance is not just a one-off event that is quickly forgotten. Rather, it can be the key that opens the door to other activities, providing the motivation people need to explore further.
- Any work you do should be readily adaptable to the needs of the different individuals you work with. Be observant, think laterally, and always be prepared to depart from the plan.
- Don't try and work with too many people with PMLD at a time. The larger the group, the more difficult it is to adapt to individual personalities.
- Always try to offer a choice of activities.
- Always look for consent.
- Take care not to push on with an inappropriate activity simply because the person involved is passive or compliant. Ask: is this really connecting? And, if not, then what would be? Activities with people with PMLD are most effective when they are about give and take – when they are truly playful.
It doesn't have to be verbal. It's an outlet for people to be able to express themselves which they might not otherwise have.
Think about all the different ways people can engage in the activity. Can you incorporate all the senses? Think about touch, taste and smell, as well as sight and hearing. Look at ways to maximize involvement and engagement.
To get someone to focus on a particular activity, try to minimize any other distractions. Keep the periods of time that you need someone to concentrate short, but observe their engagement – if they want to carry on, adapt or change the activity and go with it.
Work at close proximity
It is important that work with people with PMLD takes place at close proximity. Any event, no matter how awesome, is unlikely to have any relevance to most people with PMLD if it takes place some distance from them.
Make time for reflection
Allow time for the person to respond. If they do not seem to be engaged, leave a little more time before you move on – people may need quite a while to engage and respond. Remember, you do not have to fill every moment with meaningful activity. It is helpful to allow time for everyone to reflect and take time out. How you manage this will depend on what you are doing together.
People with PMLD, as with all of us, have off days and may not want to join in. Indeed, joining in per se may not come easily to them. It is vital for your own confidence that you develop strategies for dealing with resistance or passivity. There is no single approach, but one example might be to allow the person to withdraw to another part of the room, keeping their space open and occasionally inviting them back into the activity. Allow the activity to draw them in.
It is also useful to get as much feedback as possible from your primary audiences – the people with PMLD. Such feedback might take the form of a video that you study and discuss to gauge reactions, provided you have got everyone's consent. Of course, you must also obtain feedback from the secondary audience – such as support workers, family members and teachers. This might come in the form of debriefing sessions, interviews, feedback sheets, or an online forum. Each project should allow time for reflection, preferably facilitated reflection, so that you can further develop your practice.
It doesn't matter what you bring to the session, everything seems of value. Everyone's got something to offer. It's nice when we get these opportunities to feel part of a group.
Work from the point of view of the person with PMLD. Try to create work that is appropriate to the age, experience and modes of communication of the individual. At the same time, put yourself in their shoes – try to experience the activities for yourself. Then ask whether any aspect seems patronising, dull, or unpleasant. If this is the case, why should it appear any less so to a person with PMLD?
Change the space
Obviously it is important to make sure that the space where you are working is safe. For example, make sure that there is nothing to trip over or nothing that could fall over onto someone. Create a stimulating environment, with features to address each of the senses. This can yield astonishing reactions and needn't be a complicated or expensive business. You can achieve a great deal with a suspended parachute or lengths of sari fabric, plus some appropriately placed lamps. Making changes to the look, feel and even smell of a familiar place can signal that something new and different is going to happen.
Be prepared to do away with convention! You may have planned to do some painting with brushes, but if the person enjoys dipping their fingers or feet in the paint and working that way, go with it. We should, of course, pay the greatest attention to issues of health and safety, but it is also important to present work that is challenging. It is also essential to be respectful of the family members or professionals you are working with. Nonetheless, experience shows that the capacity of people with PMLD to concentrate and to react is frequently underestimated.
Sometimes, support workers think that their duties are discharged once the practicalities of feeding, changing and medication are taken care of – you can help them to understand that people with PMLD have as much right to take part in creative and imaginative activities as the rest of us. You can show that they frequently respond to these approaches in ways that challenge our preconceptions of them.