Dealing with stress on National Stress Awareness Day
The first Wednesday in November each year is National Stress Awareness Day, and whilst everyone experiences stress at various points in their lives parents of disabled children, and those with additional needs, often have to endure prolonged periods of emotional stress.
“Being the parent of a disabled child is extremely stressful and I know many parents who are constantly battling off depression,” said Sarah Sea, the mother of a Caudwell Children beneficiary. “You have no time to yourself as you are constantly a PA to your child, and you find yourself dealing with different services who appear not to talk to each other.”
Whilst many agencies advice those with stress to: identify the cause, be active, have plenty of ‘me time’ and set themselves new goals and challenges, its often unrealistic for the parents of disabled children to do such things.
The fact that research in 2011 showed that parents with disabled children have higher levels of stress, and lower levels of wellbeing, than parents with non-disabled children was not unsurprising.
The parents of disabled children cite a number of common factors for the cause of stress. These include accessing and dealing with services that are in short supply, inadequate or inappropriate, and a lack of services is often said to be the biggest frustration for families.
Sleep and behavioural problems of a child is also high on the list of stress factors, leaving parents exhausted, unable to think clearly and struggling to cope with daily activities.
“There are so many things that you have to remember, when there is already a lot going on, and this places an awful lot of stress on your shoulders,” continued Sarah. “There are regular meetings with social services and if you miss an appointment by mistake, despite attending the last four, then it can take up to two hours going over things and explaining what happened.
“Nothing takes into account that parents are just human beings and sometimes get ill themselves.”
The stress of parenting a disabled child also increases the risk of relationship breakdown. This can be between parents, other members of the family or friends. “I constantly feel guilty trying to balance my time between my disabled daughter and my older children,” said another mother, Claire. “And we’ve lost friends and family because they don’t understand why we are so tired and grumpy!”
Financial issues significantly impact on the stress of parents. It costs three times more to raise a disabled child and often parents may have to give up a job to provide care, reducing household income.
When a child reaches school age many parents find that they have to battle to get the support that they need. Without the appropriate equipment many children struggle to access classroom facilities and are unable to take part in sporting activities, and yet suitable wheelchairs are not supplied through statutory measures.
Fear of what the future holds also adds to the stress for families. As children transition through adolescence into adulthood, parents are uncertain about the support that will be available to their child, and they worry about what will happen when they are not around.
Research undertaken by the Social Policy Research Unit at the University of York, found that to maintain their emotional well-being, parents of disabled children wanted to feel that responsibility of their child was being shared with formal support services.
More specifically, professional counselling support and contact with other parents were identified as important.
Therefore, it’s vital that parents are aware that support groups provide important emotional and practical help. They also give parents the opportunity to meet other families in similar circumstances, giving them the platform to talk to other like-minded people. This can be a huge relief, and a great help to relieve feelings of stress.
Being more active is also important in helping parents to de-stress. This doesn’t mean that you have to complete a marathon, simply taking regular walks outside in the fresh air will help.
Knowing your rights and getting advice from the relevant statutory or voluntary organisations can also help parents to feel more in control, and better able to cope with life’s stresses and strains.
By working with knowledgeable professionals parents may find out how to appeal a decision about a child’s benefit award, or how to challenge a school or local authority’s view on their child’s needs. This will reduce a parent’s frustration and therefore their levels of stress.
Julia Lunn, National Family Services Manager at Caudwell Children, says that the services that the charity provide go some way to making life less stressful for parents. As she explained: “Our Family Support Service gives practical guidance at home, in hospital or on the phone at the point of diagnosis or during treatment.
“This can be a great comfort for families as we can complete complex forms for them or direct them to more appropriate charities and agencies.
“Either way they get the professional support that they require at a time when they need someone to turn to.
“We can also provide children and young people with specialist equipment that is vital for their independence, fund the treatments and therapies that they need, and help them to access short break activity days and fully supported holidays.”