Read about the experiences of other family carers in this series of articles written by family members themselves.
Caring for a relative with severe learning disabilities whose behaviour is challenging can have a huge effect on your life, leaving you with little time and energy for your own life and well-being.
How can caring affect families?
When a child is diagnosed with a disability the amount of information and support offered to the family varies. Families can feel very alone and unsure about how to support their child, or what will happen in the future. Seeing challenging behaviour appear in a young child can be upsetting and confusing. There is a lot to learn and getting professional help and specialist services can be difficult.
Families are often socially isolated and can be left out of family events, activities and places in the local community because of their family member’s behaviour. Family carers say they have feelings like stress, frustration, anger, guilt, shame and loneliness, or feel that no-one understands what they are going through. Feeling low or stressed can sometimes lead to mental health problems like depression or anxiety, that need medical help. Relationships break down more often for people whose son or daughter’s behaviour challenges. Finding support and time alone to relax is really important, but can be hard. Meeting other parents is really helpful to get support and to share ideas of what has helped.
Eating well, exercising and getting enough sleep can be tough when your family member’s needs come first, especially if they have sleep problems. Families can plan their time to do activities that are good for all the family and be healthy together.
Parents might not be able to work and extra money is spent if things get broken or equipment and changes are needed at home. There are benefits, direct payments and grants that families might be entitled to.
What help can families get?
- The Challenging Behaviour Foundation’s Family Support Service offers confidential emotional support by telephone or email. We also have a Family Carers’ Email Network to put you in touch with other families.
- Carers’ charities, support groups and parent networks all offer support.
- Siblings can get in touch with other young people in their position or join in special activities through young carers charities.
- A carer’s assessment from adult social services looks at whether you need extra support. This can be short breaks or respite, financial support, or help to get into training or work.
- Families may be entitled to different benefits or funding, like direct payments.