In UK society, the position of a family that includes a child with additional needs has changed. On the one hand, there are real efforts at ensuring a situation of equality, inclusion and accessibility for disabilities, and it is much rarer these days to encounter people with disabilities being hidden away from everyday life. On the other hand, many people complain about a reduced sense of community, not knowing neighbours so well, and belonging to shifting family structures where many times one parent is looking after children with no other family members to share the responsibilities.
The normality of life can become elusive when extra caring issues, especially concerning travel, going out, different timetables and tiredness add another isolating factor. Some readers may like to consider ways of easing this by deliberately plugging into the community. Individuals vary in how much, and what kind of social contact is comfortable. Some are content with casual meetings like taking children to schools, clubs, sports and so on, or shopping. However, there is evidence to suggest that people who are actively involved in not just one, but more than one social group are more resilient1.
Why more than one? Perhaps because all groups have ups and downs, and a “down” within a mainstay grouping that is heavily relied upon (e.g. extended family, parent support group or local interest group/society/club) can cause its own stresses or become unavailable. Another advantage of connecting to more than one group, in practical terms, is the wider range of personalities, knowledge, ideas and acceptance that members can share with each other.
Many children’s conditions reduce the likelihood of being able to keep to set times for going out to things, but it might still be possible to get out on enough occasions to maintain a link with a group, to host others at home occasionally , or to belong to ad hoc groupings that are less dependent on a timetable (such as children’s horseriding, or a local café, park, theatre, children’s entertainment venue), or Internet-based but also locally-organised interest groups like Freecycle, Freegle, Internet cafés and skills-/time-sharing / volunteer groups. Some people thrive on organisation, while others find it restricting – some of these are activities that do not require you to become organised in yet another way.
Some may like to link into telephone-based befriending to expand their social circle or just have a chat now and again2: charity-based befriending services are not the same as helplines that are focused on issues (such as Cerebra’s practical helpline 0800 328 1159 or counselling helpline 0800 043 9385), and not exactly like personal friendships either.
Another way might be to involve the children themselves in community activities, giving some thought to what you would both / all enjoy doing3. Each area has a Council for Voluntary Organisations (CVO, or sometimes a different name) that will have a list of things going on in the area; or you could invent your own ways. For example, some families regularly take a stall at a car boot sale, where there is a sense of camaraderie, and the child can interact or not in an easy-going atmosphere.
An important aspect of taking part in things is negotiating the variety of responses that other people have to a child who appears different or interacts in an unusual way, or who does not appear to have unusual ways of interacting but actually has. There is enough in this for another article – any thoughts you have towards that would be welcome.
I hope these ideas will light up someone’s life!
- Combating isolation. Article by Dr Alan Tepp, 2010, http://drtepp.com/features/combating-isolation/
- Examples of telephone befriending include:
- the charity Community Network, http://communitynetworkprojects.org/what-we-do/;
- Carers Trust, http://www.carershub.org/content/telephone-befriending-service and others similar in different parts of the country (look up “telephone befriending” in an Internet search engine);
- Scope, http://www.scope.org.uk/support/services/befriending/Face-2-Face-email-telephone-parent-befriending. Scope also have a Services Directory to see what there is in the area, Services Directory, http://www.scope.org.uk/Support/services-directory);
- and in a wider context, of course there are also local authority websites, tourist information centres and local libraries with information about activities.
- Many ideas in: Making a difference: how to become and remain active in your community, a guide to volunteering, http://www.state.sc.us/dmh/client_affairs/volunteer_guide.pdf (South Carolina Dept of Mental Health). More ideas, with a slightly different approach, at http://kindnessuk.com/community.php (Kindness UK).