Eleanor is 28 years old and lives in her own flat in Brentwood.With the help of her parents, Alison and Eddie, and 52.5 hours of support staff per week, she has lived independently for two years.Along with her support staff, Eleanor goes to yoga classes (sometimes she even takes her dad), swimming, the cinema, to get her hair and nails done, and to a weekly social group for people with intellectual disability


Family support the foundation for independent living

Eleanor also uses her computer and i-pod proficiently, and has become quite adept at solving technical problems herself (having tired of Eddie’s self-professed i-pod phobia!).

After leaving school at 19, Eleanor moved to a college in Wales, where she lived in a variety of supported accommodation (always with staff sleeping in), on and off campus. After this, and prior to her current flat, Eleanor lived for five years at Fitzwalter House, a Mencap-run home whose purpose is to prepare people for independent living.

Issues in early adulthood

Because Eleanor has lived in several places over the course of her adult years, she has had to deal with a number of transitions. Eleanor takes a long time to get used to people, being initially very shy in their company, so moving between different sets of staff has been tricky. The success of her most recent move – to her current flat, and to independent living – was dependent on several factors. Eleanor had a good relationship with some of the staff at her previous accommodation (Fitzwalter House). A particular support worker (Paulo), with whom Eleanor had great rapport, continued to work with Eleanor for a period after her move to Brentwood. During this time, staff from the local support agency shadowed Paulo.

Then, when Eleanor seemed ready, Paulo left and the new staff took over. Eleanor’s parents also slept in the flat with Eleanor for the first two weeks, and sometimes also stayed during the time before and after the carers were in during the day. Eleanor has a great memory for visual symbols and pictures, and her flat is equipped with numerous visual aids. For example, there are pictures on the fridge to help Eleanor prepare food, and pictures of Eleanor’s parents on speed dial on the phone (Eleanor has also now learned to use the phone memory to call her grandmother). Eleanor often calls her parents several times a day, sometimes for a chat and sometimes to sort out a practical issue. Eleanor’s mum and dad feel that the success of Eleanor’s independent living has depended heavily on their ability and willingness to put in a lot of effort and time to support her.They communicate regularly with carers, both face-to-face and through a diary kept in Eleanor’s flat, in which they and the carers can write messages and reminders for each other.

Eleanor has always had a strong preference for routine and a dislike of change. Her parents feel that this may have become more extreme in recent years, and that Eleanor is a bit less easy-going than she was in the past. Since Eleanor reached her 20s, she has tended to get more anxious about things. She will ask the same questions repeatedly in the approach to events, seeking reassurance that things will be OK, and clarity about exactly what will happen when. Anxiety can also result from Eleanor’s literal interpretation of language, or when she just focuses on specific words in a phrase. Recently, she became quite distressed that a favourite member of staff was “leaving”. It later tran- spired that she had in fact been told that this member of staff was going on “Annual Leave”. Sorting out the misunderstanding ended Eleanor’s anxiety.

Over the past two years, there have been times when Eleanor has become aggressive, throwing things around her flat and sometimes causing breakages. As a result, she and her parents have decided that it is no longer sensible for her to have the heavy glass coasters she used to have, so these have been taken from the flat. Eleanor has also begun to self-injure, at times biting her hand and hitting herself in the face. Episodes of aggression or self-injury usually follow from anxiety. Eleanor’s dad also feels that having to wait (e.g. when she wants an answer to a question) can trigger these behaviours.


Despite all the difficulties and changes in her adult life, Eleanor is thoroughly enjoying living in her flat. Given time and practice, she becomes comfortable with new routines.The first time she was expected to walk through scanners and have her baggage searched at airport security, Eleanor was very upset and became angry with the security guards. However, she has subsequently learned the routine and now it causes no problems at all. Eleanor has also become more agile recently, since losing a lot of weight at Weight Watchers (where she goes with one of her carers). Despite difficulties getting the words out when she is upset, Eleanor’s speech also seems to have got better recently, and she is more willing to try to say more difficult things. She is also now brilliant at speaking on the phone. It has taken – and continues to take – a lot of hard work by Eleanor’s family, but they generally feel that moving to more independent living has been very good for her.

Alison and Eddie
Alison and Eddie

Wir möchten Eleanors parents, Alison and Eddie, dafür danken, dass er Eleanors Geschichte mit uns geteilt hat.

Zuletzt geändert von Gerritjan Koekkoek am 2021/09/15 15:28
Erstellt von Gerritjan Koekkoek am 2021/05/23 11:29



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