After my first child was diagnosed with a learning disability I went to see a professional in genetics, who told me to have another child. He said lightening doesn't strike twice - it did. At the time we felt that it must be our fault, so we would do everything in our power to help our children. However, 40 years ago there was very little information available. I did keep asking, but professionals did not communicate with mere parents! Instead we turned to each other and to close friends for support. They gave us a friendly ear, a cup of coffee and plenty of tissues! I also got in touch with other parents in a similar position, and I'd advise other parents to do the same through a local group.
When we moved to a different area we were put in touch with a paediatrician, and we built up an excellent rapport with him. If I was worried about something I would call him and he'd ring me back when he was free. Latterly we also received information from a doctor who had been in the maternity ward when our son was born. He looked us up after he spent time in America and felt he had learned more about our children's disabilities.
Our children have had a profound impact on our family - they have opened our eyes to all disabilities and made us more caring.
Their disabilities had a massive impact on both our children's development. We didn't have any choice with my daughter's school - there was only one local to us, and she didn't get in until she was seven years old. Our children have also had a profound impact on our family - they have opened our eyes to all disabilities and made us more caring. Our elder son never knew what life was like in a normal family, but he says now ‘don't worry mum, it was home and I loved it.'
My advice to any other family going through this stage would be: be brave, keep fighting, keep asking and keep demanding.