Nigel – finding the key to open up his world
Many of us take our lives for granted; the ease with which we move around and interact with people in shops and on streets, and form relationships with people at work and school – most of us mingle actively in the community, communicating our thoughts, wants and needs, whether we think about it or not.
Imagine then a life where you preferred not to talk to people. Where verbal communication was difficult for you, and you had never spoken to some of the people who have supported you, despite the fact you had known them for many years. How would those support people know what was important to you in life – both overall, as well as on a daily basis.
Now add to that the fact that you are also hypersensitive to your environment; physical contact with anyone who you don’t know well is very uncomfortable, severely limiting your interaction with people within the community. Imagine that this was all that you had ever experienced, so you were happy enough in your world of non-verbal communication and the security of familiar surroundings, but you had never known the pleasure of doing everyday things, in everyday places with everyday people. …In fact, for Nigel, his life was a bit like a self-imposed bubble, until his world opened up with Interactionz’s support.
Nigel, now catches the bus with his community mentor to various activities around the community, and is starting to connect with others by shaking hands and making eye contact with people who greet him by name. He is part of the community, rather than apart from the community – and his confidence, and quality of life, is thriving because of it. …But, hang on – how is such a change even possible? Where do you even start to make changes in a life where you were once isolated by your disability?
Nigel has always been lucky – his parents do their utmost to make sure that he has the best care and support available. However, for a long-time it was generally accepted within disability support services that, for people with disabilities similar to Nigel’s, a community hub style support programme was the best place – and the focus was on caring for the person. Therefore, with Nigel’s long history of involvement with facilitated care, he had spent nearly three decades in community hub programmes with groups of other people with disabilities. This had been great for Nigel – but meant that he had not had the opportunity to interact with the rest of the community.
However, a new, more person-driven approach with one-to-one community-based mentoring has really revolutionised the way that individuals with disabilities are supported (rather than ‘cared’ for). Now, the focus is on finding out an individual’s aspirations, forming a plan to achieve what they want in their life, and doing it with the aim of not only increasing their independence and confidence, but also their sense of self in the community.
For Nigel, a major obstacle to this process was communication. His verbal communication was very limited, so Nigel’s mentor, who had built up a rapport with him over many years, used observation skills to identify patterns and interpret meanings of his body language and vocalisations. Over time, they built up a basic list of meanings, and this formed a basis of new, more effective ways to communicate with Nigel, which were then shared with his support network. As you can imagine, this in itself really led to a whole new window on Nigel’s world. As people were able to understand what Nigel was trying to communicate, they could respond accordingly – and suddenly people could communicate back with relevant responses. His needs, desires and feelings were no longer guess work – and there was a way to find out what Nigel wanted for his life.
Together, Interactionz and his supportive family worked with Nigel to figure out a plan for what he wanted his life to look like. Things that had always been clear were Nigel’s passion for walking and being active in general, as well as his love for music. These desires were indeed confirmed by Nigel.
However, opportunities to interact and form relationships with people outside of his support group did not happen because of his hypersensitivity to his environment. As a result, it was difficult for Nigel to go to environments outside of the places he was familiar with, particularly out into the community in busy places where there were lots of people.
So, Nigel’s mentor worked with him on improving his motor skills and hand-eye coordination as he negotiated his way around the community. They developed these skills by practicing going up and down stairs, using a pedestrian crossing without freezing, and playing soccer. The more practice Nigel had, the stronger, more balanced and coordinated he became. His confidence improved, as well as his fitness, and they were able to walk further out into the local area.
This had the flow on effect of leading to more learning opportunities as he came across new situations – both physical and social – as Nigel was more and more confident in moving and interacting further into the community. Physical objects, like a bump in the footpath, which were previously obstacles, were easily negotiated. Coping strategies in dealing with everyday situations, like someone speeding by Nigel on a bike, which previously would have been scary for him, were built up – to the point where he developed a level of pedestrian safety awareness where he was able to safely cross the road when assisted by another person. He was now moving in the community – and being a part of the community – rather than letting a disability keep him isolated from it.
To give Nigel more independence, the next step was to give him the skills and confidence to use the bus. His Interactionz mentor supported him in learning the bus routes and to recognise the bus drivers. He now knows them well, and enjoys greeting them by looking directly at them when he boards. He is able to travel with his mentor by bus, or foot, to the different community events he now attends.
One such event was therapy at a sensory room once a week. A sensory room is a room with special lighting, music, and objects, etc, designed to develop people’s responses to sensory stimulation in a controlled environment. In Nigel’s case, it was used as a therapy by experiencing different reactions to touch, sight, smell and sound. The premise for this type of therapy is that the motivation to be involved in life depends largely on a person’s senses – because it is through these that a person comprehends their world, and therefore determines how they respond to it.
In this way, music is a great way to stimulate the senses – and it was something that Nigel had always enjoyed at the hub centre. Therefore, once he had the opportunity to interact in the community, Interactionz found a music group at the local church which Nigel joined. Here he was able to enjoy and experience music, as well as having the added benefit of being able to make new connections with people who had similar interests. Thus, through his love of music, he was able to strengthen his bonds in the community.
This was a huge change from when the sum total of his social interaction was preferring only the company of his mentor and one other person attending the hub service. Nigel is now mixing and mingling with a wider group of social contacts who enjoy activities with him – including attending a cooking group and bushwalking at Jack’s Cowshed (instead of going to the sensory room!), and kicking a ball around the park with his friend.