We all know that family life can be stressful, but for parents of children with SEN the problems can be that much more profound
Everyone experiences stress at various points in their lives, but parents of a child with a disability or SEN are often under prolonged periods of physical and emotional stress.
Research shows that parents with disabled children have higher levels of stress and lower levels of wellbeing than parents with non-disabled children. A report published during Carers Week 2011 found that 75 per cent of carers, including parents with disabled children, had suffered ill health as a result of their caring work. Of these, 76 per cent had mental health problems, mainly depression, anxiety and stress.
Causes of stress for families
Stress factors for families with children with disabilities and SEN include:
Lack of services
Accessing and dealing with services that are in short supply, inadequate or inappropriate is often cited as the biggest frustration for families, and this can sometimes lead to despair.
Jayne Hill, mum to Isabelle who has autism and severe dyslexia, says: “From the age of four, Isabelle had a statement, but when she moved to secondary school it was clear she wasn’t getting that help….so I took our local authority to tribunal and won her a place at a residential school where there is one-to-one support and speech and language therapy.
“The battle cost us £15,000 in legal fees and two years of stress and worry, but it was the best thing I’ve ever done. Isabelle has made unbelievable progress.”
Sleep and behaviour problems
Children with disabilities and SEN are more likely to have sleep and behaviour problems and this can continue into adulthood. A child who does not sleep well can affect the whole family. Parents can be left exhausted, unable to think clearly and struggling to cope with their daily activities. The child can be left feeling either tired or overactive, and brothers and sisters are also affected.
Parents of children with special needs are more likely to experience relationship breakdown than other parents. Parents often also worry about balancing time between a child with special needs and their siblings, who may find that they receive less time and attention from parents.
As Natalie Pearson, mum to Sienna who has Opitz syndrome, says: “I constantly feel guilty trying to balance my time between Sienna and the older girls. And we have lost friends and family because they don’t understand why we are so tired and grumpy.”
Financial issues and poverty
It costs three times more to raise a disabled child and sometimes a family loses income because of the difficulties of caring and holding down a job. In 2000, the average weekly income of households with disabled children was £50 less than that of households with no disabled child.
Families report that times of transition for their child, such as going to school or becoming a teenager and moving into adult services, are particularly stressful. Families talk about having to battle to get the support they need.
Concern for a child’s future
Families worry about what will happen in the future when they are no longer able to care. There is great uncertainty about the support that will be available to their children in adulthood.
Families with children with special needs report feeling isolated and alone because they don’t know anyone else in the same situation.
Lack of information
Research shows that a main problem for parent carers is a lack of information about locally based services, benefits and employment policies.
Spotting the signs of stress
Parents are sometimes so busy being mum or dad, as well as carer, that they don’t realise they are feeling emotionally unwell. If left to fester, stress can lead to mental health problems such as anxiety, depression or a nervous breakdown.
Some parents are so isolated that they don’t have friends and family who can spot the warning signs of stress. It is important that professionals involved in the care of children with special needs and their families are also looking out for their emotional wellbeing.
Symptoms of stress:
• becoming emotional and irritable
• unable to concentrate
• lack of appetite
• dizziness and breathlessness
• less sociable and withdrawn
• finding it difficult to enjoy time with family even when you get a break or day out together.
Coping with stress
The Social Policy Research Unit, University of York research of 2007, Outcomes for parents of disabled children, found that: “To maintain physical well-being, appropriate equipment, suitable housing, short-term care, and skills in dealing with their child’s sleep problems were seen as important. To promote their emotional well-being, parents wanted to feel that responsibility for their child was being shared with formal support services. More specifically, professional counselling support and contact with other parents were identified as important.”
Talking to other people who are in a similar situation can be a huge relief and a great help to relieve feelings of stress. Parents find that getting things off their chest and talking things through with friends and family, parent support groups and online social networks can be a huge comfort.
Local support groups
Support groups offer important emotional and practical support to families close to home. They also give parents and carers of disabled children the opportunity to meet other families in similar circumstances. While some local support groups are set up by professionals, most are run by parents and carers of disabled children. Meeting other parents and sharing experiences lessens the isolation felt by so many parents.
Know your rights and seek advice
Knowing your rights and getting advice from relevant statutory or voluntary organisations can help families feel more in control and better able to cope with life’s stresses and strains.
Information such as how to appeal a decision about a child’s benefits award, or how to challenge a school or local authority’s views of their child’s SEN, or advice about flexible working and rights to time off, is invaluable in reducing parents’ feelings of frustration.
Sometimes families benefit from having a short break. A child can benefit from a change of scene and enjoying fun experiences with friends, away from the family. Parents are able to spend time with other children, catch up with friends and do everyday tasks. Without an occasional break parents are likely to become completely exhausted or even unwell.
If stress and anxiety are really becoming a problem, it’s important not to ignore it and hope it will go away. Parents should seek help and talk to their GP, who can help them access counselling or can prescribe medication if necessary.
Anne Brook is Head of Advice and Information at Contact a Family, a charity providing advice, information and support to UK families with disabled children: