Charity mess covers up a plague of heartbreak
People who maintain their dignity and spirit against all odds deserve much more than Frankenstein system
'E' started coming when Mary was about six months old. They leave you alone initially. They send you home and give you a bit of time to get used to things. Someone will have spoken to you about "linking in with the services", because your child will now be a "service user". But generally they give you time to learn to breathe again. And then, if you are lucky, at some point, the services kick in. We were told we were lucky because we were in a good area for services, the best in the country, potentially. And gradually you come to realise that if this is the best area in the country for services, then you really have to pity people in other areas.
E was a home visitor. It was a huge luxury, really. Apparently future parents and future Marys may not get an E. So for about a year, E came every two or three weeks for an hour. It takes a special person to be able to help in a house that is undergoing the major adjustment of caring for a child with an intellectual disability, a family that is having to re-evaluate its future, its reality and its dreams.
I asked my wife Sarah what E did for her and Mary. This is what she said. "She would bring toys and strategies and assess where Mary was at, and tell me where she should be going next. She put things in perspective and, professionally, she was amazing.