Situation: Colleen Milne is 37 and has learning difficulties. The first of the siblings to move out, she has lived on her own for five years. She has held the main leadership position in a People First group for three years and is active locally and nationally in disability rights work.
Problem: Colleen’s father, to use her words, “wraps me up in cotton wool”. He did this before she moved out, and still does this now. He worries about everything: her having a seizure, her working too many hours (even though she takes time off in lieu and takes all her holiday entitlement), her getting a bank card, her living on her own, her going to Weight Watchers and so on. Every time she tries to make a change in her life, he calls her council support person for a meeting about Colleen without her presence. Fortunately this request is turned down. Lately, Colleen’s father has become worse. He booked her a holiday without her consent. Then Colleen, who has an adult child, started a People First group for parents with learning difficulties. This made the press and Colleen was interviewed about her experiences. Her father became furious and told her she must leave People First. He told her she should not speak up about her rights and experiences. Colleen knows her rights and wants her own life, but is tiring of fighting her father all the time.
It can be difficult for a parent to stand back and let their child lead an independent life, make their own decisions and live with the consequences. Not surprisingly, this may be even more difficult for a parent of someone who has learning difficulties. They may be used to having to provide more physical care and practical support than usual and also protect their child from prejudice and discrimination.
Nevertheless, most parents do manage to let go enough to allow their son or daughter to develop their own lifestyles and there are various ways that Colleen’s father could be helped to do this, so that he and his daughter can maintain a positive relationship.
Joining a local carers support group could put Colleen’s father in touch with parents who have been through this process. Through them, he might hear about, and even meet, adults with learning difficulties who are leading successful, independent lives. He might be helped to understand how the parental role can change – that is being supportive to your adult child without having to take responsibility for the consequences of their actions.
There is a clear need for Colleen and her father to discuss what is happening between them. As Colleen and her father are not communicating with each other, this would need to be done with a skilled therapist. It might be useful to involve Colleen’s siblings too. She is the first to move out, but others may be experiencing similar problems with their father.
There would be many issues to explore:
- What are the father’s real concerns and fears? Has he discussed them openly, allowing Colleen to reassure him about her ability to cope either by herself or with her new support network?
- Have things got worse because the father is getting older and is worrying about what will happen to Colleen when he dies?
- Is he scared of being bored and lonely when his children leave home?
- If Colleen brought up her child in the parental home, her father presumably presumably supported her and may feel his help was not acknowledged. Colleen and her father need to renegotiate their relationship and avoid his interfering to the point where Colleen rejects him completely.
Does the father treat Colleen’s brothers and sisters in a similar way? Is his behaviour towards Colleen driven by his role of father to daughter, or because she has learning difficulties? Why has his behaviour got worse lately? Is it because he realises that he is not getting any younger and worries for Colleen when he will no longer be there for her?
Letting go of your children is a challenge that faces every parent from the day that their child is born. Colleen’s father has probably spent the past 37 years trying to come to terms with his daughter’s learning difficulties.
There is no mention of Colleen’s mother, so it may be that he is facing these challenges alone, or finding it impossible to share his anxieties with his family. The role of the immediate family, and the expectations placed upon them by themselves, professional bodies and society generally in supporting a person with learning difficulties has changed significantly over the past 30 years. At the same time, the role of being a father has also changed as men have taken a greater hands-on role in parenting.
It seems as if the father is struggling to accept his daughter as an adult and as someone who does not need to depend on him. Having possibly struggled to accept his responsibilities and emotions as a father to a daughter with learning difficulties in the first place, he is now faced with having to let go of his role and come to terms with the fact that Colleen is a woman in her own right, with her own life to lead.
The challenge for the professionals involved, such as the council support worker, is to remember that foremost they are supporting a father and daughter (plus the other family members), who are working through yet another change in their relationship.
How can outsiders, particularly professional workers, help to support the changing demands that Colleen and her Dad will make of each other? The obvious conclusion to draw from this scenario is to observe that Colleen does need support to stand up to her father, but who is supporting him? How many of us who work in learning difficulty services will ever truly appreciate the challenge of parenting a child or adult with learning difficulties?
We think that Colleen’s father should understand that his daughter is an adult and not a child, write members of service user groups in Derby and Wetherby. We also feel that he should mind his own business. If Colleen wants to do things then she can. Her father cannot tell her what she can and can’t do. He needs to sit down and have a long, hard think about what is going on.
We also wonder why Colleen’s brothers and sisters aren’t supporting her. It seems sad that they must know about Colleen and have not helped her. Also, where has Colleen’s adult child gone? We are worried that Colleen has not had a proper say in bringing up her own child. It seems that, although Colleen has moved to a place of her own, she still is not really independent. Her father is still there doing everything and checking up on everything.
We know of people who have reviews of their case without them being present. This is what’s happening to Colleen. The council support worker will not talk to the father without Colleen being there. Good for him.
The government says we should be valuing people, but no-one is valuing Colleen. The important thing is choice. Colleen has made her choices and her father should be proud of her and not be holding her back. He cannot say that Colleen can no longer go to People First! That is her choice and he cannot stop her.
There is also the question of rights. Colleen has rights the same as anyone else to live her own life in the way she wants to. We all felt that everyone was trying to take her rights away.
Colleen seems confident. She lives on her own, has set up a group and had a child. But when it comes to talking to her father she is not confident at all. Perhaps Colleen could do some assertiveness training to help her say what she wants to tell her father.
We also believe others at People First might have been more supportive. We think this might be because they did not know what was going on between Colleen and her father. If they did, and she was able to tell them, they could really have helped her. Many of us have struggled with our parents not treating us as adults.
This was written by members of Derby Independent Voice of Self Advocacy and Wetherby Day Centre Service Users Committee, Derby, who met to talk about the case study.