I found joining a support group for parents in exactly the same position to be extremely helpful. For me it was the national deaf children's society, and it gave me a chance to speak to other parenta who had been where I was and come through the other end. I also spoke to adults who were diagnosed as young children which was a brilliant reassurance for me. They also helped me go through the grieving process because when you find out your child has a long term illness or disability there is often a period of profound grief as the diagnosis sinks in.

I also found being very proactive helped me. I learnt everything I could, asked about a million questions, and became an advocate for my child again. Big hugs, this cant be an easy time for you