Experiences with growing up with CdLS

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.

Andrew, 24, lives independently in a flat near the seaside. He has been living independently since 2006, and enjoys it. He lives close to extended family and sees his auntie and grandma from time to time. He speaks regularly on the telephone to his mum, who now lives in Scotland.


Work options affected by issues with sleep

Andrew works two days a week at a local supermarket, a ten minute drive away. Andrew drives his own car, has an interest in motor vehi- cles and recently completed a diploma in Motor Vehicles and Repair. When we interviewed Andrew, he was awaiting his certificate and thinking about the future possibility of working in a garage.

Issues in early adulthood

Andrew says that his main difficulties are with sleep. He has always found it very difficult to get to sleep at night, and cannot fall asleep unless he has the television on. Then he has extreme difficulty waking up the next day. Sometimes he has slept through the noise of two mobile phones, seven alarm clocks, the TV on timer at full volume, and a lamp programmed to come on at the same time as alarms. 

This has limited Andrew’s options at work, although he has now been able to arrange shift times which suit his sleep patterns. Andrew is due to meet with a sleep expert to discuss his difficulties.

Andrew feels that he is quite reserved and finds socialising difficult. Working in the retail industry, and particularly talking to customers, has helped with this, but meeting new people remains hard for Andrew.

Andrew has also had problems with low mood and anxiety. For instance, he has not been able to attend certain medical investigations (e.g., for a narrow oesophagus) due to anxiety about the procedures. 

However, Andrew has also been able to overcome some of his fears. He used to be afraid of needles, but he tackled the fear head-on by getting several tattoos (despite the fact that he initially passed out!).

Jake (21) lives in a shared house with three other people with intellectual disabilities. A staff member is present 24 hours per day. He has lived there for two and a half years, and he, his family and the staff are thrilled with his progress.


Learning to deal with anger and anxiety

Jake goes to college a couple of days each week. The rest of the time, he stays very busy and active with his housemates and the house staff, going for walks or to the shops, and playing football outdoors. He gets on particularly well with one of the other residents, Simon, with whom he recently went on holiday, accompanied by the managers of their house.

Issues in early adulthood

During his teenage years, while Jake was living with his parents, things got increasingly difficult. Jake was experiencing angry outbursts and at times became physically aggressive towards his mum.
There was also an occasion when Jake leapt out of the car and ran off while his mum was driving.The triggers for these episodes were often unexpected events, or changes to the usual routine.

Jake would become progressively more anxious (the external signs of which included pacing and picking at his skin), and then frequently the anxiety would turn to anger. Anxiety and anger about changes have always been an issue for Jake, but the problem got more extreme during his teenage years. With the help of a Trainee Clinical Psychologist, Jake learned some techniques to monitor and deal with his anxiety and anger.
Jake rarely has aggressive outbursts now he’s settled into his new accommodation, but on one recent occasion he removed his bedroom door from its hinges and threw it in anger. After they had discussed the incident with Jake, it became clear to staff that he had been getting anxious about a particular upcoming event. Once he was able to opt out of this, things immediately improved. The staff at the house are learning how to spot earlier signs that Jake is becoming distressed, and to help him deal with anxiety by, for instance, playing a game of football outdoors. There are also certain members of staff to whom Jake feels he can talk when he is concerned about something. Jake has a great sense of humour, and certain anxiety-provoking events can be joked through with staff.


The transition from school to college was very difficult, but ultimately successful. Importantly, Jake’s school had a program which incorporates half days at college, and Jake was attending these with a school staff member every week for a year before he went. Some staff overlap between the school and college was also a great help.

Moving from home to his current accommodation was also hard for Jake and his family.The decision to make the move itself was difficult for them all, but they are now all extremely happy with the result.The family thought that a homely environment, living with other people, would suit Jake best, and chose his current house accordingly. Jake has now settled into the house brilliantly, much more quickly than anticipated. From around six months after moving in, his parents and the staff at the house considered that things were going quite smoothly, and the last year has been “fabulous”.

Prior to the move, Jake’s family worked though social stories with him about growing up and leaving home. Jake’s parents (Myra and Steve) and Della, the manager of Jake’s home, also all consider good communication between them to have been key to the successful transition.There was a 4-5 month assessment period prior to the move, during which Della and the family were in close contact, and this contact has been maintained ever since. The regular routines and the manager’s assertive approach make Jake feel safe in the house.Visits from Jake’s family are arranged in advance to keep things predictable and calm for him, and to avoid clashing with planned activities with the staff. However, as Jake settles in, the family increasingly feel that they can call any time, and at short notice, to ask staff whether they can pop in for a visit. For instance, Steve might pop by and take Jake out for an impromptu drink in the pub.

Clothing has frequently been a thorny issue for Jake. It has been important to him to wear specific things for specific occasions, and in the past he has often dressed like a policeman, or copied exactly the clothes which his father or grandfather wore. On a recent family holiday to the Lake District, Myra and Steve were surprised – and slightly apprehensive – when they noticed that Jake was not wearing his “going home” clothes on the morning they were due to return home. To be met by a casual “I’ll change after breakfast” was to Myra and Steve a major indication of Jake’s feeling relaxed and happy.

Keith is 24, and lives in rural Ireland with his mum, dad and four younger siblings. Keith’s family found that the local day services on offer did not suit him, and he now has an individualised program of activities, aided by 12 hours of weekly support from staff who come to the house.

Digital camera and laptop help get behaviour into focus

The program of activities is carefully devised by his family and reviewed monthly by the support agency providing Keith’s care. Activities are chosen based on observation of Keith’s current skills, and on decisions about what skills would be most useful to gain to aid his independence. Keith’s achievements are noted and the activity plan updated regularly. As part of this plan, Keith has attended eight separate days at his local college, and this has been a big success. He will attend eight more days from October 2011 to March 2012, when he will graduate with a Certificate in Contemporary Living.

When we spoke to Keith’s mum, Catherine, Keith had the previous evening made dinner for his family. With support, he had bought and cooked the meat and prepared and cooked the vegetables.

Keith carries a digital camera around with him, and he and his family find this a wonderful aid to communication, helping Keith to express what he wants to say and providing an immediate basis on which to initiate conversation. Keith also saved for, and bought, his own laptop. He has recently participated in a local pilot program to make his own “digital biography”, independently choosing the pictures and music, typing words with assistance, and including details such as which recipes he likes to cook.

Keith’s family aims to provide him with as many opportunities for social interaction as possible, and social situations are also built into his activity program. Keith has built up a great rapport with people in the local community. He also has other friends with learning disabilities he has met through different activities such as art classes. Keith speaks to one of his friends on the phone every week, and she recently came to stay with him.

Issues in early adulthood

The period after Keith left school, and started at an adult day service, was extremely difficult for him and his family. When he was due to attend the day service, Keith would refuse to come out of his room in the morning, putting his bed across the door.The change in transport in itself proved tough – there were major problems with Keith getting to the day service on the bus, and Catherine describes how Keith would “freeze with fear” when he saw it coming.
With hindsight, Catherine feels that Keith wasn’t given the preparation he needed to cope with the changes that were coming up, and she feels that, in this respect, the system failed him.


Keith thrives on predictable routines and definite schedules. Unexpected events can cause big problems, with difficult behaviours such as holding tight to objects or people and not letting go when asked. Often associated with unexpected change, these behaviours also occur more generally in situations when Keith is frightened or asked to do something he doesn’t want to do.

Keith’s family feel that, when they realised there was nothing else on offer other than the day service, this was the start of a difficult and important journey; Catherine describes it as an initially very bleak time. A breakthrough for the family was when Keith had a Positive Behaviour Assessment, which helped identify triggers for Keith’s anxiety, and some possible factors contributing to his holding behav- iours. In addition, big improvements occurred when Keith was given his digital camera, and began to use it to interact so effectively. His laptop has also given him new ways to interact with people. Keith’s family was initially worried about the class in which Keith enrolled to make his digital biography, because he did not know the 11 other participants, or the tutors. However, Keith appears to have become less socially anxious recently, and has thoroughly enjoyed the course; he and his family are extremely proud of the outcome. A further break- through was getting Keith his own car: care staff can now drive Keith to wherever they need to go without the stresses and unpredictability of public transport.

Keith would like, one day, to have the family garage converted so he could have it as his own home, and his parents are keen that this should happen in the future. Keith has also expressed an interest in working, and his family hopes that a job, perhaps doing some basic chores in a care environment, might become accessible to him.

This is not to say that Keith doesn’t still experience problems, especially when things are unpredictable. There were difficulties over the summer when new and different staff were coming to work with him, and Keith’s holding behaviours increased. However, his family has increasingly developed ways to minimise these (partly based on the outcomes of the Positive Behaviour Assessment). On next year’s calendar, Catherine is already marking out the summer as a potentially difficult time for him, and plans to prepare Keith for this over the course of the year. She also feels that they are learning to negotiate the amount of information Keith needs in advance of events, in order to prepare him without causing him unnecessary anxiety in the lead-up.

Catherine feels that over recent years, the progress Keith has made is extraordinary, and that 99% of the time he has a “dignified, valid and beautiful journey”.

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.

Victoria is 26 and lives in a flat in Essex, a short drive from her mum and dad, Jane and Alan. A member of staff is present in the building’s office 24 hours per day, to support Victoria and the residents of the other flats.Victoria does not frequently need help from the support staff, although she sometimes goes to chat to them if she feels lonely.Victoria’s mum , Jane, comes round at least every week for a social visit, and to help with household tasks.


Working around a fear of glass

When she was 19,Victoria moved to Grimsby to spend three years at college. She didn’t initially want to go, but when she arrived she had a great time – and by the end she didn’t want to leave. On returning from Grimsby,Victoria’s social worker facilitated her move to her current block of flats. She eased the transition by visiting Victoria and meeting with her family in Grimsby before the move.

Issues in early adulthood

Over the past five years or so,Victoria and her family have faced some difficult issues.Victoria has developed a strong fear of glass and crockery, following an incident in which she swept some glasses off a table during an angry outburst in a restaurant. It can now be difficult to persuade Victoria to go out when she suspects there may be glass or crockery present. It is unclear whether Victoria is fearful that she might smash
glasses/crockery (as in the initial incident), or whether she has developed a phobia of these items.

Although it can be very difficult,Victoria and her family work around this problem.Victoria has only plastic crockery in her house.Also, her family have at times been very successful in persuadingVictoria to come out even when she doesn’t want to, and have found that she then enjoys herself.
However, there have been numerous occasions when Victoria has not attended events which her family feels she would have enjoyed.Victoria’s interests appear to change quite quickly, and she will sometimes stop doing some activity without warning or explanation.

Having control over plans helps Victoria. For instance, she has been able to organise and attend a barbecue in her block of flats, and enjoyed being able to control aspects of the event.Victoria’s family think that a recent prescription of antidepressants may also be helping with Victoria’s anxiety.

Victoria is very active on social networking media. She has a fantastic sense of humour and can be very sociable in the right context.When I met her,Victoria was looking forward to flying to France for a holiday – with her dad, Alan, as pilot.Victoria is also already planning and saving up for her 30th birthday party, for which she wants to have a ball.


Age-related changes in cognition and behaviour

Individuals with CdLS should receive extra support during adolescence and early adulthood, using a person-centred approach to reduce mental health issues and challenging behaviour.

Chris Oliver

By Dr Alice Welham, Dr Jo Moss and Professor Chris Oliver
Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham

Senest ændret af Gerritjan Koekkoek den 2021/05/23 11:40
Oprettet af Gerritjan Koekkoek den 2021/05/23 11:26
translated by Lia Munck



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