Posted on 13/09/2018 by David Burgess
As Northamptonshire County Council makes £70m worth of spending cuts, how does it feel for a needy family to have support withdrawn?
"Mum!!!! Daniel's outside in his pants!" cries Alex at the crack of dawn.
"Is he out the front?" asks mum-of-four Torie Brooks, who had fallen back to sleep.
"No, he's in the back garden," says Alex.
"Well, that's all right then," she says, hauling herself out of bed yet again to attend to the younger of her two disabled sons.
Torie is accustomed to early morning wake-up calls of this sort at the family home in the Northamptonshire village of Woodford Halse.
Daniel and Alex both have a rare disorder called Smith-Lemli-Opitz syndrome, in which the body is unable to produce suitable amounts of cholesterol.
It has affected the way they have developed.
Daniel also has ADHD, a heart condition and probably autism, while Alex has a pronounced curve in his spine.
Like any other child, Daniel also has his interests - his main one being insects.
"He gets up any time from 03:00. Suddenly he'll be in the room asking me where the bees are or something," she says.
"And I don't know where the bees are!"
In most families, it's the toddler who wakes mum and dad at an ungodly hour, but four-year-old Edward, though demanding, is the least of Torie's worries,
"Edward's a handful now, but he will overtake Daniel in ability at some point," she says.
"Daniel will never be able to live an independent life. He will always be at home. I've had to accept that.
"Although he's nearly 12, inside mentally he is about a four or five-year-old."
His interest in wasps and spiders is verging on obsessive. The plastic jar in which he collects them and feeds them is never far from his side.
He claps enthusiastically when he manages to catch a new tenant. We are all asked to admire them.
'To be 'normal''
Older brother Alex, 13, will not grow any taller.
He has had numerous operations on his spine so he can walk and hold himself up properly. Surgeons tried to correct the curve by fusing it.
However, it is still bent and he shrugs in a matter-of-fact way when he shows me.
"He is really quite clever," says Torie.
There is an intensity about the teenager, who also has a rather dry sense of humour.
He loves playing games on his phone and is often to be found in his gaming chair in his bedroom - a "normal" teenager in so many respects. .
Then there's Annabelle, 15, who was struck and seriously injured by a falling tree when she was 10.
This left her with eight fractured vertebrae, a bleed on the brain and a fractured eye socket.
She had an operation on her face during which metal plates were inserted and she was required to wear a brace for six months.
Annabelle came home from hospital needing to use a wheelchair, and started secondary school in one.
She's no longer in the wheelchair but her mental health was affected by the accident and she is waiting for an appointment for support.
Just before the accident, the family had been celebrating a really good start to the year, says Torie, a woman accustomed to bad news, with a smile.
Children in care
It's easy to see why a family like this needs help from its local authority. But since the financial crisis of 2008, councils have had to tighten their belts significantly.
Northamptonshire, where the Brookses live, has fared worse than most. In February, it warned it may not be able to balance its books, and repeated this in July. It recently voted to make radical cuts to jobs and services to fill a £70m void and, as part of a plan to claw back cash, has had to end all further spending above that required by law.
That includes non-statutory children's services.
Northamptonshire County Council has said it is looking after more children in care than similar councils.
This included youngsters who came into its care between 2013 and 2017 and unaccompanied asylum-seeking children.
A council spokesman cited "unprecedented demand for local services, rapid population growth and reducing levels of funding from central government" as reasons for its strapped finances.
''Such circumstances have meant that all services have had to be reviewed over the past few years to balance budgets," he added.
''However, we are determined to protect services for the most vulnerable in our communities while bringing the council's spending under control.'"
The council has already closed or moved numerous children's centres, including the one attached to the school in the village where the Brooks family lives.
And more are likely to close in the next round of cuts, as some were shifted to local libraries, some of which are now threatened with closure.
In recent weeks, as the council's cash crisis has intensified, the family has been told Daniel will stop having occupational therapy and his autism assessment appointments are being postponed for two years.
It is families like these who are at the sharp end of the cuts in the county. For Torie, the children's centre was a godsend in the early years.
"I needed to get out with the boys,'' she said. "If I was at home on my own I would start to think about all the negatives.
"Often we would go down there at 09:00 and stay there until it finished at 15:00."
She adds: "There was one time when it had been snowing heavily and they came and got us!"
Torie described how staff at the centre encouraged her to interact and stimulate the boys in different ways because of their developmental needs.
"They actually came to the house and showed me how to play with the children."
As new issues emerged with each boy, she was able to find the right place to go for help through the staff at the centre, she says.
But that's all changed now.
Torie says parents of children with additional needs have to fight for everything and the older boys' schooling was no exception, as Torie told the BBC in 2013.
When Alex was eight, his primary school in the village called her in to say it was struggling to keep up with the boys' needs.
"I came back and I cried. I was really upset. It's heart-breaking.
"For want of a better word - I want the boys to be normal. I want them to be able to do what everybody else is doing. I wanted them to go to the school in the village like the other children."
It was at this point, she says, that it really hit home that her boys were not going to live normal lives.
"When he left mainstream it absolutely ripped my heart out."
After the usual battling, Alex was finally offered a place at a special school over the county border in Oxfordshire.
"We could see straightaway the difference in Alex and we knew we needed to get Daniel in there too," says Torie.
"They have done remarkably well. They have already achieved more than we'd ever hoped for them."
But not long after the boys settled in, letters arrived saying the council planned to move them to other schools.
"We fought that hard.
''I said, 'For every one reason you say they need to go, I will give you one why they need to stay'."
Daniel's heart condition means he needs to be within spitting distance of a hospital and Northamptonshire relented.
Recently the family was told that Daniel's direct payments of £44.72 monthly, for specialist after-school clubs and much-needed respite care, are to stop.
One activity the family uses this money to pay for is an animal-centred club, where Daniel does some gentle horse-riding to help with his core strength.
After complaining, the family's social worker took up their case with the council. They've been told the payments are being reinstated.
But there's another bigger battle ahead.
The Brooks family had been approved for a grant to extend their house. This would have been to give Alex and Daniel the separate bedrooms they require as they grow older.
''Daniel wakes up at any time and just gets out of bed,'' Torie explains.
"The other night he came in at 22:00 asking for breakfast. He doesn't understand the time thing."
When Alex was able to sleep separately, the benefits were obvious, Torie adds.
Both boys have meltdowns borne of the frustrations they face living with their conditions and, Torie explains, need a private, safe space to express those very real feelings.
The council agrees the construction work is needed. Its own quote says the building work will cost £75,000, but the grant offer has dropped to £35,000.
And although Torie's husband is working long hours, the family is unable to find the £40,000 shortfall.
"We could probably get it done a lot cheaper by not going through a council contractor, but that is not allowed," she adds.
"Sometimes," says Torie, it seems "forces are trying to frustrate what we've fought for".
But she tries to keep positive, using her evident patience and sense of humour.
"Being a parent of children with issues can be very, very lonely. Not everyone understands. Although I am fairly lucky in that I do have close friends.
"But it isn't easy to find childcare when it's urgent. And sometimes you just need reassurance from someone that you are doing a good job.
"There is a great deal of guilt behind it too.
"I think every parent feels like that at some point anyway. But the guilt of wondering, 'Why your children, why you, and what did I do wrong?' is hard.
"Although deep down you know it's just the way life has happened. It doesn't stop those feelings."
'Flame goes out'
With regard to the cuts, it's easy to see how her family will be affected practically.
But how does it feel?
''It takes a lot to pluck up courage and admit you need help," says Torie.
''But when there isn't any help it's like a flame that goes out. You fight and battle to get the help that's needed and it's not there.''
She also worries about the longer-term future.
''What happens when I'm not here to fight for the boys, or when I'm physically not able to look after them any more?''
And she feels angry too.
''Nobody deserves to be treated this way.''