During pregnancy my wife received all the normal antenatal check ups. We weren't really given any information, except for a mis-diagnosis that scared the hell out of us.
But there didn't appear to be any problems when our daughter was born.
We received the diagnosis when she was two years old. They told us it was global developmental delay - which basically means they haven't got a clue. When we got the diagnosis I was devastated, especially for my wife. I felt protective towards my daughter but also scared about how we were going to cope. We got no support to deal with the initial shock. I went back to work and burst into tears.
We got no support to deal with the initial shock. I went back to work and burst into tears.
We didn't feel ready to get more information about our daughter's disability until 3 months after the diagnosis. The two doctors who were assigned to our case were very supportive and our GPs were, and are, very helpful. They fit us in at the drop of a hat as they understand that our daughter cannot communicate what is the matter with her.
We got support from our local children's service and a Families in Focus group who specialise in learning disability. We also built up a network of parents who are in a similar position to us.
We didn't know anyone in the family who had a learning disability, and none of our other family members got any support. One set of grandparents switched off completely and have had little to do with their granddaughter. Our other children were too young at this stage for it to have an impact on them.
I wish I'd known at the time that life would go on, that things would be different but that didn't mean they still couldn't be great. I also wish someone had told me not to panic and shut myself off from my family.
I wish someone had told me not to panic and shut myself off from my family.
If I could give advice to other parents, I'd tell them to start making plans for every stage of your child's life, to keep these plans up to date and to fight for everything your child needs and deserves. For us, having control over our own finances through direct payments has made a big difference as it means we can decide what support we want for our daughter.
We just want her to be happy and for the family to survive.
Direct payments: in some cases, individuals may be able to receive support from their local council as cash, allowing them to choose the services they want for themselves.