Our child becomes independent: Individual counselling supports the further course of life

Living, working, leisure and friends

Parents of people with disabilities in particular are concerned at an early stage about what opportunities will be open to their children as adults. Living, working, leisure, making friends and thus becoming an integrated part of society are all important topics for adults with PWS. They also want to be able to prove themselves and develop outside their parental home. Since many people with PWS normally require 24-hour care throughout their lives, they can continue to test their independence and self-determination either in their parents’ home, or outside it in a specialised residential and care facility. Families can seek outpatient advice regarding this. Two psychologists specialising in the Prader-Willi Syndrome support the parents and their child in finding an individually harmonious and feasible way forward for both parties.

Northern German States

Contact person:

Dipl.-Psych. Dr. Norbert Hödebeck-Stuntebeck

Wittekindshof Bad Oeynhausen

Tel.: 05734-61-12 88

Email: Norbert.Hoedebeck-Stuntebeck@wittekindshof.de

Southern German States

Contact person:

Dipl.-Psych. Dr. Hubert Soyer

Regens Wagner Absberg

Tel.: 09175- 909-1100

Email: hubert.soyer@regens-wagner.de

Living in a residential group: Together we are strong

The approximately 16 residential and care facilities nationwide offer educational-psychological concepts tailored to the Prader-Willi Syndrome in which adults with PWS are in good hands. Some parents struggle with fears of separation, feelings of guilt and distrust when their child leaves the parental home. It is understandably difficult for them to place their special child, for whom they have cared so intensively for so many years, in the care of other people. Therefore, this step needs to be considered carefully.

For people with PWS, living in a residential group can be tremendously facilitating and stimulating. After an adolescence in which there are fewer and fewer interactions with peers, they learn that they no longer need to feel so alone or so different with their various problems. They enjoy finally being part of a group in which everyone has similar conditions and needs. This brings them together and provides them with security, joy and self-confidence.

Professional care and food safety

In the search for an optimal childcare centre, parents and their children receive intensive support from the Living and Employment Working Group of the Prader Willi Syndrom Vereinigung Deutschland e.V. (Prader Willi Syndrome Association Germany). It is certainly important to many families for their adult child with PWS not to be too far away from home, so as to ensure regular contact. In addition, of course, what the respective facility offers is a decisive and a professional concept that adapts to the respective personality of the future resident and responds individually to his or her abilities. 

Food security, weight regulation, exercise, mental balance and a well regulated daily structure remain high up on the agenda of a person with PWS. The institution needs to cover these important aspects to a sufficient extent through appropriate assistance services. A psychologist who is well versed in the Prader-Willi Syndrome must be available to deal with crisis situations at the facility. The proximity of specialists is also necessary to clarify medical problems. An interesting range of sports and leisure activities provides vital exercise and also offers the possibility of experiencing creativity and conviviality. 

Good chemistry between the residents also ensures a sense of well-being. All these factors contribute to the successful transition from a parental home to a residential facility. And finally, a good relationship of trust between the residents, their parents, carers and therapists is also important for communication to work. Agreed rules, which apply to all participants, provide stability and security in their dealings with one another.

Psychological balance is the be-all and end-all

24-hour care in a facility guarantees the residents balanced and regular meals, usually every two hours during the day, giving them the security they need when it comes to food. Experience has shown that people with PWS are better able to live in pure PWS residential groups for this reason because they can respond more concretely to their special needs. Maintaining a healthy weight is not easy in a world where keeping away from food is a constant challenge. “To go” and “snacks” are slogans that suggest to us that we can – and should – eat something in every situation in life. What happens to a person who, due to his genetic disposition, has the greatest difficulty in resisting his or her hunger? A person with PWS works all his or her life to steer this pressure in a positive direction, constantly trying not to keep giving in directly to his or her needs. 

This does not always happen without the person experiencing strong inner psychological conflicts. A person with PWS can understand that it is not good to be fat and unwell. They do not want to disappoint themselves, their family or their carers, so they try to stick to the rules. But then it happens again; they have overindulged. Strong feelings of guilt are often the result. These can lead to foreign aggression and occasional self-abuse. The general rule: the more balanced a person with PWS is, e.g. through a loving, forgiving environment that offers them simple structures, beloved rituals and clear rules, good social bonds, a high degree of security and trusted regularity, the more that person will succeed in breaking this negative cycle. Everyone should be allowed to make mistakes. A good attitude towards life means that you don’t always do everything right and are still accepted.

Careful balance of living and working

The opportunity to enter a working life is particularly important in order to expand self-determination, develop personality and performance, and strengthen self-image. People with disabilities also develop an awareness that they can use to some extent in their social life. In workshops for the disabled, where many people with intellectual disabilities work, they can be used and promoted according to their capabilities. Their needs can also be met individually. This is particularly important for people with PWS, who in many federal states in Germany are first examined by an official doctor or a physician from the German Employment Agency at the end of their school education in order to determine their ability to work. In the vast majority of cases, the doctor recommends that they attend a workshop for handicapped 

people (WfbM), since they are not able to enter the mainstream labour market due to their limited abilities and reduced social skills. The procedure for admission to the WfbM offers the possibility of carefully adapting and integrating the individual abilities of each person to the work and support that the workshop offers (technical committee, entry process, vocational training, integration process into the workshop, internships in the most diverse working groups etc.) The WfbMs offer a large selection of different workplaces with different requirement profiles, e.g. industrial production, packaging, metalworking, assembly, household services, gardening and landscaping, woodworking etc. or outdoor workplaces in external companies. For people with PWS, a balance between work (WfbM) and living (parental home or housing 

facility) is of particular importance in order to adapt to PWS-specific behaviour patterns. This includes, in particular, a PWS-appropriate range of meals, which must be coordinated with the residential facility or the parents. In addition, food safety must also be guaranteed in the WfbM so that employees with PWS do not have access to additional food. So far it has been rare for people with PWS to find a job in the mainstream labour market. However, if this is the case, regular support from parents, professional case managers or integration professionals must be ensured. These make sure that the overall coordination of work, housing and diet and other problems – the former being especially difficult to control – are appropriately responded to in both areas of life.

Supervision, guidance and structure are also important in the workplace

People with PWS are more than willing to get involved in day-to-day work and meet the demands placed on them. Above all, if they receive sufficient support, in the vast majority of cases they are able to succeed in integrating themselves into the working world. Accurate guidance and a reliable daily structure at the workplace are also important prerequisites that provide security to people with PWS. On this basis, workshop employees with PWS are often characterised by reliability, commitment and motivation. In principle, they can implement work instructions well, and they can often be entrusted with more complex assignments if they are introduced with care. The results of their work show both qualitatively and quantitatively that they are willing and able to concentrate on the demands placed on them with both coarse and fine motor skills. Depending on their performance capacity and their dependence on “disturbances”, these skills can be used on an hourly basis or throughout the working day. People with PWS are very happy to identify with activities that meet their expectations. These are preferably serial tasks where they can develop their beloved routines. They also prove their talent for learning. 

Syndromes often cause them to find it difficult to deal appropriately with short-term changes, such as changing work orders. They then find themselves in an inner-psychic conflict that makes it difficult for them to continue their work. Timing and support can help to avoid this. If problems arise in the work context, such as misunderstandings in organisational matters, perceived competition with other colleagues or misinterpretations of conversations or fragments of conversations, which really or supposedly affect the working day to which they are accustomed, it is important to look directly for possible solutions. Corresponding discussions, professional support and time off should aim to ensure that the person concerned also looks for his or her own solutions, in order to be able to calm down and feel strong again in a working context. It is the aim of every workshop for people with disabilities to recognise the individual skills and development needs of its employees and create appropriate care and training opportunities. If people with PWS find a motivating and supportive field of work with a reliable and comprehensible structure, they can develop and build on their strengths.