Parent's Comments

• I feel so isolated
• Why won't anyone believe me?
• No one can say if my child will live or die
• Our children are expendable. (American mother)
• All of the children with a named condition were given a scribe to help with their exams. My son was refused. I had to fight for his rights yet again.
• There was a look of panic on the doctor's face when we said there was no diagnosis. We were shunted into a side room until the doctor had gone off duty.
• I'm tired of trying to explain to people that my child isn't naughty but has an unnamed condition.
• The SENCO at school said she had no idea what to do to help my son.
• The child next door is playing football (named condition). He gets DLA. My son can hardly put one foot in front of the other. He was refused benefits.
• The traffic warden confiscated my blue badge. She said there was nothing wrong with my child. I had to reapply and prove the need again.
• The trouble is our children look "normal"
• It's always the same with these undiagnosed conditions. No yardstick to measure by, no-one listens to the parents, wary of the children and pass the buck whenever possible.