When we found out about our daughter's learning disability we weren't aware of what it was. She has no speech and is highly dependent on others for support. As parents we turned to each other when we got the diagnosis, and decided to do as much research as we could to find the best way forward. My advice to other people would be to talk to people, to ask everything and everyone. Don't bottle things up and shout if you need help.
I had no support from the local authority to get a school placement for my daughter until she was seven. When I questioned them, they said that because I was a teacher I could pull out her potential myself. We only got a school place when I wrote to Jimmy Young's radio programme and agreed to go live with our story. They approached the local authority for a response and my daughter had a place the following Monday! I wish someone had told me to fight sooner - that way, she might have received schooling earlier.
We didn't receive any information at this stage, except by asking other parents. There was also no statementing process for my daughter at this time - a doctor gave her pieces of a large jigsaw, and when she couldn't put them together they told us she needed to go to a special school. Looking back, there are many things I wish I'd asked, but at that time we felt that we were at the bottom of the pile.
Our local GP practice gave us very little support, as they assumed the paediatrician would cope and help us, and he was the only one we trusted. We were not told about any services at this stage - they just hoped we didn't want any, but we did find it easier to make contact with other parents once our daughter went to school. We were offered two weeks of support during the holidays each year, but only if we fought for it.
We were not told about any services at this stage - they just hoped we didn't want any, but we did find it easier to make contact with other parents once our daughter went to school.
Our daughter is 41 now and is in full time residential care as she needs 24 hour waking staff. She comes home every other weekend and for holidays. We take her to all her dental and medical appointments, and when she is hospitalised I am admitted with her and am there 24 hours a day. Without speech she can't explain anything, and the acute hospitals do not have the staff to give her ‘special' treatment. Someone always has to be there to agree to things such as taking blood and putting in a drip.
Our daughter's learning disability hasn't stopped us from having an excellent relationship with her. She will predecease us, so no-one will be left to do the caring and the worrying. We made time for the rest of the family by splitting ourselves three ways - we had very little sleep, but we never missed anything important in the life of our elder son.
The level of support we had to provide made us stronger as we had to learn to cope, to be resilient and executive.