Parenting A Disabled Child – The Struggle

Parents who have a child with a learning disability are facing unnecessary pressures on their relationships, according to a new report which finds that one in three of these parents is in a relationship which would be described in the counselling room as ‘distressed’. The research also found that parents who have a child with a learning disability are more likely to feel lonely, have less time for date nights and identify money worries as a strain on their relationship.

The report, Under pressure: the relationships of UK parents who have a child with a learning disability, was produced by leading relationships charities Relate and Relationships Scotland and is sponsored by learning disability charity, Mencap. More than 5,000 people were questioned in the survey that forms the basis of the report, including 280 parents of a child with a learning disability. 

In response to these findings, Relate, Relationships Scotland and Mencap have joined forces to call for better access to short breaks services, improved childcare support for parents of children with a learning disability and targeted relationship support. The charities say that, together, these measures would reduce the strains on parents’ relationships and ensure families can enjoy the positives that having a child with a learning disability brings.

A lack of quality time parents of a child with a learning disability have available for one another was highlighted as a major issue in the report. Nearly a quarter (24%) said they only find time for a date night once a year or less, compared to less than a fifth (17%) of other parents.

Ramya Kumar, 38, from Swindon, whose nine-year-old son Rishi has autism and a related learning disability, told us: “Caring for my son has in many ways taken over my life. Caring can sometimes be 24/7 and I’ve felt like, in some ways, I’ve forgotten how to be a wife to my husband. We rarely get to go for meals as a couple and can sometimes feel isolated from society due to the attitudes of other parents to disability. But, we wouldn’t change anything about Rishi. He’s given me the priceless gift of perspective and has made me a better and stronger person.”

Ramya added: “Many of the challenges we face can be solved by having the right support from local authorities and acceptance from the public. Rishi gets respite care for four hours a month. We’re lucky that our local community nurse has been a pillar of strength. Her support has made a huge difference to our lives. Our major worry at the moment is about Rishi’s future and making sure he gets to be fully part of his community – it’s created a great divide in opinion between my husband and I. But nothing can replace the boundless love and joy that Rishi has given us. If we had known about the support available and if it had been there from the start, some of these challenges could have been avoided.”

Finances were also found to be a major contributor to stress in relationships, and mental health was the second biggest relationship strain, with one in four identifying this as an issue – more than twice as many as other parents.  As a likely result of these pressures, 22% of these parents reported at least occasionally regretting being in their relationship, compared to 14% of parents in the general population.

Commenting on the findings, Jan Tregelles, Chief Executive of Mencap, told Belle About Town: “It is upsetting – but not surprising – to hear about the relationship pressures faced by parents of children with a learning disability, especially as Mencap’s own research shows these strains are avoidable.

“Having a child with a learning disability is not the guarantee of hardship that many would have us believe. Despite this, many families are living without access to necessary support and interventions which can be the difference in a family reaching breaking point or not.

“As a society, we have a lot to learn about how to deal with disability. Public attitudes can lead to parents feeling isolated and authorities too often see the child as the problem. But we know that if parents are able to get the right help, such as financial support and better access to short breaks and extra childcare, poorer family wellbeing is not inevitable, and, in fact, these families’ relationships can really flourish.”

On top of the relationship issues, feelings of loneliness and poor overall wellbeing were common.  More than one in five parents of a child with a learning disability admitted to feeling lonely often or all the time – compared to 13% of other parents. One in six parents of children with a learning disability has no close friends. Parents of children with a learning disability are almost twice as likely to feel down, depressed or hopeless often or all the time (27% compared to only 14% of other parents).

Parents of a child with a learning disability were also more likely to agree that all relationships come under pressure from time to time and everyone could benefit from support with their relationships (64% agreed compared to 53% of parents without a child with a learning disability).

Chris Sherwood, Chief Executive of Relate, said: “We all face challenges in our relationships, but our research shows that parents who have a child with a learning disability face additional pressures. Unhappy relationships can have a terrible impact on couples and their children but it doesn’t have to be this way. At Relate, we know how counselling can benefit parents of children with a learning disability and we need to make sure it’s available, as part of a wider package of support, to families who need it.”

• For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email help@mencap.org.uk
• Relate and Relationships Scotland have released the Under pressure: the relationships of UK parents who have a child with a learning disability report to raise awareness of the importance of relationships for individuals and society. For more information or to expore the services offered, see www.relate.org.uk