I didn't receive any tests during my pregnancy. Once my first child had received a diagnosis, I spoke to my GP and saw a professional in genetics. He told me ‘lightening doesn't strike twice.' It did. We didn't get a name for my son or my daughter's conditions until they were 9 and 7. My initial reaction was panic - I'm tired, I'm exhausted, I'm frightened, how am I going to cope with two feeds? I turned to my GP and to a paediatrician for support, but although he saw us monthly, he was little or no use. I started asking questions on day one, and 41 years later I'm still asking them!
In the end we received very little support, and had to insist upon things like a second opinion ourselves. At the time, I wish we had known that we would survive somehow, and that we had been able to speak to someone in similar circumstances for advice and encouragement. I got most of my information from the library and from Mencap, who I joined when my children were 3 and 1. I also joined a welfare for children in hospital group.
At the time, I wish we had known that we would survive somehow, and that we had been able to speak to someone in similar circumstances for advice and encouragement.
My daughter did not get a school place until she was seven, so I was caring 24 hours a day, 7 days a week, 52 weeks a year and I had to give up my career as a teacher. I tried to make sure the diagnoses had as little impact on the rest of the family as possible - the children's dad was great, but I have no siblings and my mother, a widow, taught full time and lived 100 miles away.
I found out about my local Mencap group, and their friendship network and support were my salvation. I am still a member all these years later.