Having a disabled child has an effect on the whole family, not just parents and siblings. As a grandparent, you may find yourself in an unfamiliar and sometimes difficult situation. The child's parents, brothers and sisters and other relatives may be looking to you for information and support. And this may be at a time when you are trying to come to terms with the news that your grandchild has a disability.
Modern families
Increasingly, modern families are being faced with a range of pressures, such as demanding jobs and financial constraints. This means you're more likely to be involved in providing childcare and other practical help. This may be even more so as a grandparent of a child with a disability or health condition.
Support from grandparents
Grandparents are a huge source of support. Grandparents who are less supportive, tend to be those who find it difficult to accept a child's disability. And the disability movement has changed significantly over the years. You may have had little contact with disabled children when you were young as in the past many disabled children were cared for away from home.
Most grandparents feel that their role is a very varied one, with some additional worries if the child was disabled. And concerns about how involved to be and what help to offer are common. Just being there is a very important role to play but a little sensitivity might be needed about the level of input to offer.
Different families
All families are different in their make-up, but many grandparents report that their involvement in their grandchild's life is greater where they're the child of the daughter, rather than the daughter-in-law. And most say relationships with the child's parents remain good if they had been good before the child was born. Similarly, if the parent did not have a partner involved with the disabled child, then grandparents were often involved in providing additional support.
Inevitably, not all families have good relationships and sometimes the arrival of a disabled child adds to already strained relations. Grandparents can go through the same emotions that affect parents (including anger, grief and denial), but some find it hard to move on to an acceptance of the situation.
Many families describe these initial feelings as a kind of grieving process which sometimes lead to looking for someone or something to blame. Feelings and ideas like 'whose side is to blame' or 'you can always have another child' can cause additional pain and distress.
Listen and support
Equally, some grandparents are overwhelming in their offers of support and advice, noting that sometimes it is hard to know when to back off. There is a strong need to care for your own child which can evoke strong maternal or paternal feelings. It's important to really listen to the parents and acknowledge their needs as well as addressing your own feelings of loss.
Ideas about parenting
As a grandparent you may not always share the same ideas about parenting as those of your son or daughter and their partner. What is important however is a consistent approach with the child. Difficulties can often be avoided by everyone responding to the child in a similar way, particularly for children with behavioural problems. These situations can often be helped by a feeling that you are all pulling in the same direction.
Relationship breakdown
When marriages or relationships break down this can have all kinds of implications for grandparents. You may be concerned about continuing to have contact with your grandchildren and want to know about your legal rights. There are organisations that can offer help and advice. Some grandparents find themselves in the position of taking on the full-time care of the grandchildren when families breakdown. There is a great need for support at such times, whether this is emotional or practical. Ring the helpline for advice and information about support.
What is helpful for grandparents to know?
Every family is unique. Parents take differing lengths of time to find the right direction for them and their family.
- Try not to assume that help has been offered, for example from social services or a GP or consultant
- Remember, some parents might be struggling even though they appear to be coping
- There may be some particularly difficult stages for parents, such as around the time of diagnosis or for when no specific diagnosis can be given
- Often parents have to deal with a range of statutory services including health, education and social services and the process can be quite exhausting
Siblings
Siblings of disabled children often feel that because of the additional care needs of their brother or sister, there is a lack of time for their own needs. This can lead to limited family activities and additional pressures at home. There may be an important role to play here for grandparents who could perhaps offer some special time for siblings, or include them in activities they would otherwise miss out on.
Support and information
A few grandparents groups are beginning to be established with the recognition that grandparents also feel isolated and in need of support. Many grandparents feel excluded from the normal information networks available to parents and feel that professional workers should include them when information is shared. They often look to parents for information and this can leave the parents feeling unsupported. Don't be afraid of looking for information. Parents often find it frustrating explaining time and again to professional workers about the particular disability their child has and it can be a relief to them to know that at least within their family, there is someone who has some knowledge and understanding.
Contact a Family can help you to locate information about individual disabilities or medical conditions and the range of issues that may affect the family. Local libraries, health centres or GP surgeries can also be helpful sources of information.
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