GransnetGrandparents often provide essential support to their offspring who have children with special educational needs (SEN), but many say that the experience can be tough and feel more support is needed, according to a survey.

The joint survey by grandparents network Gransnet and learning disability charity Netbuddy found that 86% of grandparents say their help in looking after a grandchild with SEN is essential to the care of that child, and 96% of parents agree. Indeed, 10% of respondents said that they provide more than 40 hours of childcare per week.

Parents said the support grandparents gave was practical (100%), emotional (48%) and financial (3%).

Other findings in the survey of 350 grandparents included:

• 91% of grandparents and 92% of parents said there was not enough professional support given to grandparents of SEN children
• 44% said they felt that they only partly understood their grandchild’s condition
• 30% said they don’t feel confident caring for their grandchild all the time
• 57% of grandparents (and 87% of parents) said they felt that it was easier for parents to accept their grandchild’s mental and physical limitations than it is for them
• 49% said they spend more time with their disabled grandchild than with any other of their siblings.

Many grandparents said that they found their experiences hard. One responder said: “I feel that there is not enough help or encouragement. I have had to do it by myself with the help of books and the internet.”

Grandparents also said that they feel some sadness for their own child who will not have the same experience of parenthood that they had, and find the experience harder to accept in some ways: “Although I grieve for the all the things my grandson will never be able to do, the pain of seeing my daughter hurting so much is terrible. I need someone to unload that to.”

But grandparents also feel positive about the effect they can have on their children and grandchildren’s lives, saying they are able bring life experience and patience to the care of their grandchild: “As a grandparent, I have the opportunity to escape and recharge my batteries, which parents do not. Therefore, I’m more able to act calmly in times of stress. We have more time to teach everyday skills, particularly if there are other siblings.”

Although all parents said they would like grandparents to be involved in the upbringing of their child, 12% said they did not receive help citing reasons such as: the grandparents feel too out of their depth, the care is too physically demanding for them, or they live too far away.

One parent said: “I would love the support of my mother in caring for my son. However, since his diagnosis she’s literally shut us out. It’s so hurtful but I think she just cannot handle the pain of not having a normal grandchild and his complex needs.”

Lara Crisp, editor of Gransnet, said: “This survey confirms how valuable grandparents are to their children’s families, especially if their grandchildren have additional needs. However it also reveals just how tough the reality of having a grandchild who has a disability can be. Grandparents feel they can, and do contribute substantially to the care of their grandchildren with special needs but need more support and practical advice.”