Relatos de experiencias


Freedom presents its own challenges

Estey turns 31 this year, and lives in her own flat in Brighton. Her parents live just around the corner and see her regularly. She phones them if there’s a problem (a blocked drain; too much noise from the neighbours). Estey also has a call button system and sensors in her bed due to her epilepsy, which started when she was 23. Estey pays for a cleaner to come every two weeks.


Last year Estey successfully completed a Work and Life Skills course at college. She is also an active member of her church, and helps out with Brownies and Guides. As well as CdLS (diagnosed only in 2009), Estey has a diagnosis of Asperger’s Syndrome and socialises with her local ASD group, Aspire. A Christmas party with this group was where Estey met her boyfriend of over five years, whom she sees every Wednesday. Estey plays the drums, likes listening to music and story CDs (her favourite author is Roald Dahl) and watching films. Estey also has an interest in steam trains, and collects fans.

Issues in early adulthood

Estey’s increased ability to live and go out independently – and to use public transport – has allowed her a lot of freedom, but has also presented big challenges.
In recent years, Estey has had problems when things don’t go according to her expecta- tions. For instance, she became quite distressed and angry when she was not allowed to get on her usual bus, leading to an incident in which the police became involved. It can be very upsetting for Estey when plans change unexpectedly (e.g., if a friend cannot make an arranged meeting), or if she has not been able to adequately prepare for a situation (e.g., if she hasn’t brought the right clothes for an activity like cooking or walking). In these instances, Estey has had some problems with anger and aggression, as well as anxiety.

To help deal with these problems, Estey has taken part in Cognitive Behaviour Therapy (CBT). She has learned to walk away and listen to her music to cope with difficult emotions like anger. Estey also now carries a small information pack listing her diagnoses and difficulties, which she can show to people to help them respond to her more helpfully. It is not always immediately apparent to people that Estey has an intellectual disability, and that this might require special consideration.

Dealing with Estey’s tendency to take things very literally has sometimes been tricky for her family and others. In the past, Estey has refused to speak to a policeman because she had been taught not to speak to strangers. Her parents have now explained to her that policemen (and certain other people in uniforms) do not come into this category. Estey’s parents also take great care to explain exceptions to general rules like these, and to try to anticipate potential problems with instructions. Estey has a mobile phone, which she can use to phone her parents if there is ever a problem when she is out. This has been extremely useful to the family, as sometimes Estey’s parents have been able to talk her through problems as they arise.
Estey’s parents feel that her difficulties with anger might be related to the onset of her epilepsy, or to the medication she has to take to control it.They also feel that Estey has been a bit more sluggish in her movement in recent years and that her memory, and possibly her speech fluency, might have become slightly worse as she has taken the anti-seizure medication. In addition, Estey’s self awareness has improved, and she has been more aware of her limi- tations. Her CBT therapist has helped Estey to focus on the things she can do, and to look at the posi- tives in situations.


Over the years, Estey’s parents have spent a lot of time advocating for their daughter, and have often had to fight to get the right support for her. They have found ventures to be much more successful when they have had good communication with the other people in Estey’s life. For example, the Work and Life Skills course at college went well as a result of Estey’s parents being in close contact with her teachers.

parents of Estey
parents of Estey

Estey’s parents have spent a lot of time advocating for their daughter, and have often had to fight to get the right support for her.

Historial de la página
Última modificación por Gerritjan Koekkoek el 2021/09/15 15:00
Creado por Gerritjan Koekkoek el 2021/05/23 11:27



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