Kate Lister suspected something was wrong when her third child, Barnaby, was born four and a half years ago. When he failed to gain weight, she continued to voice her concerns, but was told she was being neurotic.
'By chance, about six months ago, I read something in my medical notes which suggested I might have Munchausen's syndrome by proxy. When I read that, it made me feel sick.'
Barnaby was nearly ten months old when her suspicions were confirmed - he has cerebral palsy.
Kate's story typifies the lottery in provision. Barnaby has benefited from excellent early years care. He attended a special pre-school, which Kate describes as a 'life saver', and then a mainstream nursery.
This term he joined the reception class of a mainstream primary school in nearby Newbury that has a unit for children with physical disabilities.
'There are 12 to 15 children in the school with disabilities, so all the staff are familiar with working with disabled children. They have a physiotherapist on site, and hydrotherapy, and an orthotist comes in.
'Barnaby is loving being one of the boys and being a bit naughty, which he thinks is really funny. One mother told me how her little girl was playing at home and said, "Push the chair in or Barnaby won't be able to get past".'
However, Kate has a seemingly unending fight with her social services department. 'I need to battle at every single stage for every aspect of Barnaby's care. I applied for a special chair for Barnaby in February. I had to nag to get the assessment. It has been approved and we are still waiting.
'I want the best for my child but I don't want it to be at the expense of somebody else's child. I think finance is a problem, but it's also down to lack of organisation. I get Disability Now, the magazine published by Scope, and I look things up, which is really their job. What they should be doing instead of rushing around dealing with crises is working to prevent crises.'
Amelia
The best advice is that early intervention is crucial for disabled children. But Sarah Richards had to first fight for a diagnosis for her daughter Milly, now aged two, and then campaign for treatment.
Sarah recalls, 'It was in July when the consultant told us he was pretty sure she had had a stroke and had cerebral palsy. She did not have the CT scan, which identified the area of the brain that had been damaged, until October. Then there was a six-month wait for physiotherapy and occupational therapy. We paid for private physiotherapy, which we couldn't afford, because we knew early intervention was crucial.
'Milly has amazed us by what she has been able to do. She has just started walking, and we did not really know whether she would ever be able to walk.
She has started saying a few words. Every day now there is something new.
'She has just started at the Mencap Centre in Watford and she really enjoys it. The staff are lovely. They are very well trained and know what to expect. They are helping her make progress with speech and co-ordination.
Our aim is that Milly will go to mainstream school, but we will have to see.
'We found out about Disability Living Allowance ourselves. It is a lottery and I think a lot is down to "he who shouts loudest". It is the only way to get things done.'