Every grandparent can remember how they felt upon hearing the news that their new grandchild had arrived into the world, but how do grandparents feel upon hearing the news that their grandchild has a disability? Shock of course, but how about alone, afraid, confused and anxious? These are just some of the feelings that I had upon finding out that my second granddaughter had been born with an underdeveloped brain.

Initially we were told that she might never sit up unaided, walk, talk, or hold down a job. No one knew what the future held for her. Fortunately, she amazed us all by eventually sitting up on her own, then crawling, then standing, and she is now fully mobile. At 5 years old she is still non-verbal, has global developmental delay, but she is a loving, happy little girl with a strong personality and we adore her.

As you can imagine, being a parent of a disabled child is difficult. It is a lifelong struggle to get them the best care and support. It is often said that parents of a special needs child go through a process similar to grief, and although they love their child they also grieve for the child they never had.

Being a grandparent of a child with special needs is also difficult. What is less talked about is that grandparents grieve too. They grieve for their grandchild and also for their own child who has suddenly been thrust into the world of disability - not the life we had envisaged for our daughter. Often, grandparents will grieve in silence as they somehow feel it is not right to share their worries with others, especially when they are expected to be strong and supportive.

After talking to a couple of grandparents one day at my granddaughter’s special needs nursery school, I soon realised that my husband and I were not alone in our grief. I decided I wanted to do something to bring grandparents who had special needs grandchildren together and so SNUG was born!

The group is currently in two parts and both provide a platform for help and advice, and for sharing the good times and the bad. Joining is simple. All that is required is that you are a grandparent of a child that has special needs.

The closed Facebook group allows grandparents worldwide to be able to connect with one another. To join the Facebook Group search for SNUG (special needs united grandparents) then click join.