I felt I was being blamed - improving support to parents with learning difficulties

Michele Wates, Research and Development, at Disabled Parents Network, UK, introduces the personal stories of mothers with learning disabilities.

The inspiration for this feature was a day long seminar organised by the Department of Health in London on 13th June 2000. Everyone who I have spoken to says the same thing about that day - that what they particularly remember is the stories told to us in person by three women with learning difficulties. There was no beating about the bush. They talked with great strength and clarity about their experience as mothers. Each woman’s story was different but there were common themes too: their love for their children and sadness at not being able to get hold of appropriate support for their parenting, the sense of being pre-judged and their frustration at not being able to make their voices heard. Finally, they all said what a difference it made to have the support of advocates who were on their side.

Mary, Sally and Jackie have all kindly agreed to their written talks being included in this feature and their accounts go to the heart of the matter.

A very useful overview was given at the seminar by Tim Booth. This took in some of the research that has been carried out in this area out over the past few years in a number of countries and the way in which parents with learning difficulties can find themselves facing additional barriers of discrimination at the hands of the legal system and from the very systems that should be there to support them.

Sadly there is no question but that parents with learning difficulties are still facing dilemmas and difficulties similar to those described by Mary, Sally and Jackie but there have been encouraging developments too.

The Department of Health has written an update on how the messages from that day are being taken forward in the UK. Alison Richards, legal advisor for an organisation called the Family Rights Group, supplies information about another piece of work in progress.

Evelyn Schneider and Paula Edmonson of Circles Network, an advocacy organisation supporting people with learning difficulties based in Bristol, UK, write in very practical terms about the value of Circles of Support and advocacy in supporting parents with learning difficulties.

Mary’s story

Hello my name is Mary. I went to a boarding school for people with learning disabilities, but I didn’t learn anything there. I went there when I was seven years old until I was fifteen. I think I got put there because I ran away from my other school.

I am a parent of six children, five have been taken away from me, two are up for adoption, and three for long term fostering. I have one child, Jennifer, living at home with me.

My first children were taken off me because of a violent partner. There were no problems with how I was as a mother but ‘nobody would believe that I could separate from him.

I met ACE (Advocacy Can Empower) through social services. I needed my own independent support, someone I could talk to. I am told I have had loads and loads of chances - but I don’t feel I have. I was in hospital because of the violence of my ex-partner and they took my children off me. They could have helped me find a hostel and given me the support I needed - maybe then I would still have my children with me. They said my learning disability was enough to send me away to school but not to give me extra help with my children.

I have now had help to deal with violent partners, things like assertiveness courses. I had regular sessions talking to a family centre worker and I go to the family centre.

My five children who are in care have not been kept together. Since they have been put in care they have all been moved. My eldest son is thirteen. He has had four moves and they are looking for a new home for him now. I would like to spend more time with him and have him start to stay with Jennifer and me. If I got the right help I would like him to live with us. My daughter Jennifer, who is my sixth child, is two and a half years’ old. She is a happy child; we like reading together, playing with toys. She likes to go swimming - if it’s something to do with her I’ll do it.

I feel I wasn’t fairly treated and I still say that now. They wanted a care order and Jennifer was in foster care. They now have a supervision order that I have agreed to, but she is living with me now. I believe that they decided to take Jennifer away right from the start - not giving me a chance. I had her early and had to go to the case conference hours after giving birth to my daughter by Caesarean section. I had to leave my new baby in the hospital feeling worried that social services would take her away. When Jennifer was born I had a social worker who did not get on with me. There was a personality clash. I asked to change to a different social worker but was told no and that I was trying to work against social services.

I now do have a different social worker who will sit and listen to me. She tries to help me work out what the problems are and what to do about it. She offers clear advice and help and support. This is what you need. Because of this I trust her and she is someone I can go to if I need some support. Social workers need to build up a trusting relationship with the people they are supporting and not be arguing with us all of the time. They should ask us what support and help we think we need. It should be OK to ask for help when you think you need it. Sometimes I need respite, but if I ask for help they think I can’t cope.

There are things that would be helpful to new parents or parents-to-be. There should be groups for parents to meet and get information and support. There should be support before the baby is born. All the professional people who are involved from social services and health should give you the help and support you need before they take the child from you. They tell you what you are doing wrong in a meeting. What they should do is sit down with parents and explain how to do it right.

I wanted to come here and talk today because things need to be changed. It is hard not to have your children with you but talking and telling people what has happened helps.

Sally’s story

My name is Sally. I am 34 years old. A few years ago I was living in a group home in Suffolk but wanted to be more independent. A lot was happening to me about that time. I had a boyfriend who lived in a different part of the country. I used to travel about three days a week to see him. I had to get up about 6am to get the bus.

It was about this time I found out I was pregnant. I used to have to leave my house at 8.15 in the morning because I was not allowed to stay in the house on my own. As I got more pregnant I was very tired.

When the twins were born Sally looked after them in the special baby care unit for about a month. Sally was allowed to take them home. The babies were placed apart from each other in separate foster homes. For the assessment the babies were brought to Sally from 9am - 6pm with a carer who was constantly there.

Sometimes the meetings I had to go to were very difficult and I needed someone to help me to understand everything they were saying. My advocate helped me through the courts and did everything she could to stop my children being taken away from me. If it was not for my advocate I would have been very ill. I think that if I had had to do everything alone I would have had a breakdown. She also helped me find a good solicitor. It was important to have someone for me, not just someone from social services or health, because I felt so angry with them for taking my babies away from me.

My social worker did not do much to help me. I think she had already decided that I could not cope. I kept asking for pre-natal classes like other mothers-to-be, but I never had one at all. I felt that nobody listened. I wanted someone to be there all the time and help me and just be there. I needed someone to help with the shopping and changing nappies. Someone to show me how to do things.

When they took my children away from me it felt like the end of the world. We are normal people; we are the same way as you are. People with learning difficulties don’t feel any different than you when they have their children taken away. I want my children to know that I love them.

We all need help at different times in our lives, all of us, not just people with learning difficulties. It is important to have people outside of the services and in the community around you to help you to speak up for what you want out of your life. They can support you to get people who make decisions to listen to you.

I did start a group for parents who have learning difficulties. We talked about our experiences and how we could make it better for other people. We passed our ideas on to people who make decisions. The professionals still meet to talk about parents who have learning difficulties. They pay for their time and petrol and transport, but they will not pay our expenses to meet.

I am happy again now. I am in a new relationship and we hope to get married next year. We are still deciding about whether to have children or not.

It is important to talk about this because I want people to know how much it hurts. I want things to change and if people listen to people with learning difficulties they will understand how wrong it all is.

Jackie’s story

I am Jackie Knight. I live in Shirehampton, Bristol, with my two boys, Stephen who is ten years old and Michael who is nine.

To set the scene - in 1993, I became a single mother. My partner left, which was a good thing because we’d had years of problems. But it was not good to be on my own - I was scared. My mother was in hospital and died a year later after a long illness. The rest of my family had told me to get rid of my partner and they would help, but they didn’t.

I felt disappointed and hurt because I was on my own, scared, having to cope with two young children, and my family had let me down. I felt very isolated and was not coping very well. The house got into an unacceptable state. I asked for help but I was told I was coping fine. There were lots of professionals but I did not feel in control of things. They all seemed to be telling me different things. There was no one there for me - they seemed to focus just on the children’s needs. I became more isolated. I didn’t want to see the professionals because they did not seem to be helping. I had no friends and no one I could turn to.

Stephen was two years old and Michael was twelve months at the time. Stephen had been having fits since he was nine months old but no one believed me. I became more isolated. I was excluded from meetings, and so I was unaware of what was going on. I felt a lack of control - at meetings I was talked about and not to, everything seemed to be done to me instead of for the boys and me. In the end my children were put on the child protection register for neglect. I was very frightened, because I didn’t know what it meant - no one explained things to me. In a child protection meeting they agreed that I should go for assessment because no one had seen Stephen having fits.

I thought my feelings were being disregarded - the focus was still on the children. I love them dearly and wanted to keep them. My sister gave me a long lecture, gave me no support and told me to pull myself together. This was unexpected and I felt hurt and disappointed.

Three weeks later a psychologist turned up unannounced and told me he was there to assess me for Munchausen by proxy. I remember that he asked me three questions and left telling me l didn’t have it but he explained very little. This was unexpected, an unplanned visit. I felt nervous of the possible consequences. I didn’t know what Munchausen by proxy was so I had to look it up.

A week later I had to go to another psychologist to find out why things were the way they were. I felt not listened to. I thought she had formed her own opinion before getting to know me. I resented what my partner had done - I was very angry with him for letting us down. I really needed support and didn’t feel anyone was listening to me. I went to see her for about a month and a half. She asked questions like, ‘How long have you been on your own? Why are you not coping? Why did your partner leave?’ I was so angry. I had to expose my personal life. I felt I was being blamed - for the way the children were.

I was referred to a community psychiatric nurse (CPN) and I saw her fortnightly either at the hospital or at home. I was told to meet her because I had lots of baggage, it was someone to talk to, and because I had lots of resentment towards the children. She started to listen but told me not to feel so angry with my partner and to let it go. My mum died and a month later my visits with the CPN stopped. I went back to the psychologist fortnightly for a few months. I thought nothing had changed. I was still isolated and my self-esteem was low.

By July 1995 I was depressed and felt suicidal. I went to see the psychologist. There was a student in with her. She told me that feeling suicidal was not a problem. I was shocked and surprised - even the student was surprised at that. In the end I refused to see the psychologist, as she was no help. I had another assessment before I went to court and the psychologist report said I have a personality disorder and the children should be removed. I was scared stiff and didn’t know what to expect, but the solicitor was brilliant.

I still don’t know what a personality disorder is. The court recommended I work with the Circles Network so I could keep my children. It was nice to have someone listen to me, just for me, to help me. They didn’t judge me. I was relieved, positive and knew things would change. The Circles Network facilitator was the first person to ask me, “What do you want?” It made a big difference.

In 1996 Stephen was found to have tuberous sclerosis - he has bad eczema but he has had no fits for a while. This year they have just told me I am not the carrier. Michael has learning difficulties and has had hearing problems. My children are still with me. The supervision order has been removed. We have moved around a little and I now have a problem with my neighbours that causes a strain and is bad for Stephen’s eczema. As both boys have learning difficulties things are not easy for us all. Michael’s behaviour has been a concern but we are working on that. He doesn’t like going to school because he has had some problems with some of the other children. He has a Circle of Support in school and that helps. I am firmer with him and things are getting better now. I have a Circle of Support and they are all great.

My confidence is improving - I have spoken at conferences in Bristol, Sheffield and Spain about my experiences. To sum up, during the assessment process I felt terrified most of the time, not listened to and annoyed. In the end it was good to have someone to talk to (Circles Network) - to feel valued as a person in my own right.

First published in Disability, Pregnancy & Parenthood international, Issue 36, October 2001.


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