Don't forget us – parents of children with learning disabilities issue plea to nurses

Families share their experiences and how they feel there can be a lack of health and social care support

• Perceptions about having a child with autism or a learning disability are changing
• However, families say that they often feel excluded and isolated
• Our case studies show that families would benefit from support and information in coming to terms with a diagnosis
• Learning disability nurses can help other health and social care professionals understand behaviours of children with learning disabilities and autism

Parents of children with a learning disability have been speaking out about their experiences and the support they need.

A group of parents gathered for a conference at the University of Nottingham as part of a National Institute for Health Research (NIHR) project to improve the experiences of children with learning disabilities and their parents.

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Event organiser Nicola Wright, assistant professor in mental health at the university, explains that the spur was parents reporting that their needs were being neglected, forgotten or dismissed.

Navigating the system

Ms Wright’s team is also conducting a global literature review of 57 papers on the well-being of parents of a child with autism, Down’s syndrome or intellectual disability generally. These made a link to parental depression and anxiety, as well as joyful experiences, says Ms Wright.

Joann Kiernan, a learning disability consultant nurse at Alder Hey Children’s Hospital in Liverpool and a lecturer at Edge Hill University in Ormskirk, says a ‘palpable sense of exclusion’ emerged as a theme in her research on the experiences of families where children have behavioural difficulties and a learning disability.

• RELATED: How a child with learning disabilities can strain family relationships

She says: ‘They felt it wasn’t the learning disability, it was the behaviour that impacted on everything.

‘They talked about having to navigate the system to receive support – they were requesting support and not getting it and being told to use support that either wasn’t accessible or didn’t exist. They were waiting for a diagnosis or help and then going out and finding it themselves.’

Learning disability nurses could play a pivotal role in addressing this feeling of exclusion by helping their health and social care colleagues understand the behaviours of children with behavioural difficulties and a learning disability, so they can offer practical support, help and information to families.

Shift in attitudes

In the US, University of North Carolina school of nursing professor Marcia Van Riper says there has been a big shift over the past 25 years in parental attitudes to having a child with Down’s syndrome – from much stigma initially to more positive views.

Recently she has been working on a large international study, with questionnaires completed by more than 3,000 parents in 50 countries so far.

‘One of the biggest findings is that while some families might struggle adapting to the birth of a child with Down’s syndrome, many families actually adapt well and some thrive,’ says Professor Van Riper.

Families can do well

Despite this shift, she says parents in Europe are being encouraged to undergo non-invasive prenatal testing.

• RELATED: Health inequalities: people with learning disabilities more likely to experience the worst of what society has to offer

‘Parents are being pushed to make the choice to have testing, and if the testing comes back as positive they are being pushed to terminate the pregnancy.’

She believes interactions with nurses can set the tone, and families can do well if they have up-to-date information about how other families are coping.

‘The biggest shock you are ever going to go through’

Angie Emrys-Jones, from Truro, Cornwall, has a son, Ted, who is 12 and has Down’s syndrome.

‘It’s like the biggest shock you are ever going to go through. I was quite ignorant at that point. I didn’t know anyone with Down’s syndrome.

‘I now teach in a hospital once a month, telling midwives how it feels to be that mum with that baby, what words hurt and how we can rephrase things.

‘I spend a lot of time talking to them about implicit bias, the things that we subconsciously absorb from the world around us. If you are constantly told the narrative on Down’s syndrome that it’s bad news, that is how you view it.

 ‘He’s a son, he’s a brother, he’s a friend, he’s a Saturday footballer, he’s a horse rider – all of the things that a lot of other boys in a similar age category are… and he has Down’s syndrome. I thought I was going to live my life at that constant heightened emotional state of worrying about him all the time, but actually it’s not like that.’

Feelings of isolation

Rachel Wright, from Southend-on-Sea, Essex, is a nurse and she and her husband Tim, a GP, have three sons. The eldest, Sam, 13, has severe brain damage.

‘As Tim and I are both medically trained we were very conscious of things that might go wrong.’

‘But it wasn’t until we had the MRI scan of his brain at ten weeks that we realised the full extent of his brain damage and resulting disabilities.

‘Within the first two or three years of a child’s life, particularly one with more complex needs, there is this gradual evolution of your child showing you who they are, and those first few years are thick with emotion. I remember feeling very isolated – our lives were similar to those of other people who had just had a child, but also immeasurably different.’

Her book, The Skies I’m Under, is about parenting a child with complex disabilities, and she runs parent workshops and provides information on her website Born at the Right Time.

‘I couldn’t get to this acceptance thing’

Sarah Clayton, from Tamworth near Birmingham, was used to working with children who have complex disabilities and is the chief executive of Simple Stuff Works. Her daughter Abi developed complex needs after being treated for a brain tumour and later suffering a stroke.

‘Abi turned 18 and she should have been on a beach in Magaluf. She wasn’t, she was out with her mum and dad.

‘I’ve lots of friends who lost their children, so you can just end up conflicted all the time. I should be grateful because she’s still here, and I am, but there’s also the guilt. I feel disloyal to her sometimes when I miss the child who isn’t there anymore and then I feel desperately guilty because Abi is here.

‘She’s fabulous, she’s the most stubborn person. I’ve often said it’s the only reason she’s still here. She’s fabulous, but very different to the Abi before.

‘You are supposed to go through various grief stages and come to acceptance. I used to beat myself up all the time because I couldn’t get to this acceptance thing.’

Huge relief

Liz Herrieven, from Hull, is a consultant in paediatric emergency medicine at Hull Royal Infirmary. Her daughter Amy, 13, has Down’s syndrome and autism.

‘I found out Amy was going to have Down’s syndrome before she was born, and my initial scans were all pointing to a different life-limiting condition and there was talk that she might not survive.

‘When they told me that she was going to have Down’s syndrome I was hugely relieved.’

‘The big thing I noticed that will always stay with me is people being surprised I was okay with it.

‘A lot of the initial talk we had was about deciding whether or not to continue with the pregnancy.

‘I know rates of terminations are incredibly high, and with the new test I think there’s going to be more pressure on parents to find out.

‘Once you find out, there’s pressure to make a decision. I think the only way that we are going to continue to have children with Down’s syndrome is if people know the pros and cons.’

Anne Horner is a freelance writer

Find out more 

• Born at the Right Time
• Simple Stuff Works
• The Skies I'm Under