A Birmingham solicitor left at the point of despair caring for her severely disabled son won a legal care battle with Birmingham City Council potentially worth £2 million.
Jane Raca, who has now written a book about her struggle, said she was plunged into depression by dealing with her son James, who was born 15 weeks prematurely with severe brain damage.
Mrs Raca said her life as a successful solicitor working on big cases involving the likes of Robert Maxwell and Lord Brocket, was left in pieces by the trauma of what followed.
She was happily married to Andrew, a parliamentary candidate, and together they had a healthy toddler called Tom.
“My waters broke at just 24 weeks,” Mrs Raca, aged 48 and from Edgbaston explained. “As soon as James was born he was rushed into intensive care.
“The consultant said almost all the left side and part of the right side of his brain was damaged.
“At that moment I didn’t care about anything else, I just wanted him to live.”
The first two days were critical then James stabilised and the family were able to bring him home at four-months-old.
“I was in a state of ecstasy, I’d never been so happy in my life,” recalls Mrs Raca .
“He didn’t look any different to any other baby but looking back, I think we were in denial about his brain damage because it was such a horrendous thing to think about.
“The enormity of it grew as he grew.
“It was like watching the tide go out and gradually seeing what was left behind on the beach.”
James didn’t reach his milestones like his peers. He didn’t walk or talk and his limbs became stiffer. He was diagnosed with cerebral palsy, then started having epileptic fits and also began to show signs of unusual behaviour.
Mrs Raca said: “James hated to leave the house except to go to special school.
“He was only happy when watching clips of Teletubbies over and over again. He would eat nothing but ham sandwiches and crisps.”
This led to another devastating diagnosis – James was severely autistic.
“Before long he would attack us on a regular basis. He ate his own faeces. He woke at 4am almost every day and shouted for hours. We became stupefied zombies.
“Even though our mums did try to help, we didn’t have a lot of family close by and this is the sort of trauma few people can relate to.
“When James was five, we sat in front of his consultant and wept at the unbearable lives we now led.”
The consultant, surprised the family had not been given any respite breaks before, referred them to the social care department of Birmingham City Council.
But getting adequate support was a battle they would endure for many years to come, a battle that would force Mrs Raca to even contemplate suicide.
Mrs Raca said: “It got to the point where I simply couldn’t carry on.
“When James was eight, in 2007, I sat with a friend and wept ‘my life isn’t worth living.’
“I meant it. I saw no hope, no change, no liberty and no sleep, just a lifetime of looking after James.
“James couldn’t carry on living with us. It was destroying us all.”
Mrs Raca sent a 10-page report to their social worker called ‘Life with James.’
Mrs Raca said: “It talked of how he attacked his older brother Tom and younger sister Elizabeth if we tried to go out in the car, how social life was impossible, how distraught I was that we couldn’t occupy him meaningfully, how I was depressed, sleep-deprived and didn’t have a life.”
Despite pouring her heart out to social services, nothing happened.
So Mrs Raca decided to take matters into her own hands and, after much research, discovered if a local authority wouldn’t agree that a child needed a residential school, then the parent could take the matter to an independent tribunal.
“I could only find three residential schools in the UK that came anywhere near fitting the bill for James.
“I went to visit them. They were all over 100 miles from our home.”
Mrs Raca found the perfect school – Dame Hannah Rogers School in Devon, and James was accepted – but the annual fees were an eye-watering £185,000.
This would add up to £2 million over the course of his school life up to the age of 19.
Mrs Raca says: “Now I had to get the council to pay. I decided to get a barrister as I was too involved to represent myself at the tribunal.
“The barrister said we’d need expert witness reports from speech and language therapists, occupational therapists, physiotherapists, an educational psychologist and expert social worker.
“By the time the case was finished, I’d spent £20,000 of an inheritance on them and the barrister.
“The expert social worker assessed my parenting levels as ‘extremely high’. Despite knowing I’d done my human best for all my children and my husband, I still felt I’d failed.
“I shouldn’t have needed that endorsement but I did. I had a big lump in my throat when I read that.”
Eventually, the Racas won the tribunal and James was granted a funded place at Dame Hannah’s.
She said: “Neither of us dared take it in but a little sparkler had been lit in our stomachs which became brighter and brighter.
“I spent a week in a cottage in Devon so I could be with James every day whilst he settled into his new school.
“I could cope with leaving him because I could already see he was opening up to the staff like a sunflower.
“However, I still drove away at the end of the week feeling a confused mix of sadness, relief and exhaustion.”
Since being at Dame Hannah’s, James has done things he would never have done at home, like watching fireworks, going to the library, signing hello, cooking and powering himself round in an electric wheelchair.
Mrs Raca added: “The letters we receive from his ‘houseparent’ fill me with joy. They really love him and he’s so happy. He has a full life there.
“Life reverts back to how it was when he comes home for holidays, which is difficult.
“But I love visiting James at school. I get to do things I could never do at home because he’ll tolerate trips out in Devon.”
Mrs Raca has written a book called Standing up for James because she was so shocked by the inadequacies of the system that she felt compelled to do something about it.
She has changed the names of her other two children and her husband, and not included too much detail on the effect it’s had on them, to try to protect them in what is a brutally honest account.
“I believe parents with premature, disabled babies should have a key worker from social services going to visit them at home for the first six months.
“That key worker should draw together all the services involved and make arrangements so the parents don’t have to chase for them.
“I think it’s also important for education, health and social services to sit down together and agree on a joint care plan for the child to take away the system of ping-ponging from one to the other.
“I’m hopeful the new Children and Families Bill will be move towards this but none of this will work without more therapists and the budget for them.
“I’ve tried to give the council the benefit of the doubt whenever possible in my book and a lot of the social workers who came to see us were fantastic. They were fighting the system too.”
Mrs Raca has thought of moving her family to Devon to be closer to James but there’s a risk James’s school funding could be cut if they leave Birmingham and it’s too much of a risk to take.
“I’m still in denial about what will happen to James as an adult. It’s territory that makes me go all goose bumpy.
“I’ve a fear of him ending up in an old person’s home in Birmingham.
“James is 13 now, I’m hoping by the time he’s an adult, Dame Hannah’s might provide adult social care.
“For me, I’m in a more real place now. I’ve felt very strange for many years but I’m beginning to come to terms with what’s happened to me and can talk about it.
“I’m still vulnerable to depression but I have mechanisms in place now for realising and protecting myself from it. I was a career woman before I had James and I did try to return a couple of times but it was just too difficult.
“But I feel the things I’ve learnt and the people I’ve met, particularly through charities, have enriched my life and made me a better person.
“What’s happened has also made Andrew and I stronger as a couple.
“There’s a whole debate about whether brain-damaged babies should be kept alive, whether they should be ventilated.
“I’ve never once wished that James had never lived.”
A spokesman for Birmingham City Council refused to comment, adding: “It is a historic case, we would continue to respect the anonymity of the child and she (Mrs Raca ) is, of course, free to write a book of her experiences and opinions.”
l For information, or to buy Jane Raca’s book Standing Up For James (£8.99), visit www.standingupforjames.co.uk or Waterstones online.
