My family’s struggle to get assistance with our severely disabled son when we could no longer cope
By the time he was five, James had been diagnosed with cerebral palsy, epilepsy and autistic spectrum disorder (ASD). This triple hit was difficult for all of us to take. The labels seemed disproportionately heavy for our fragile blond child with the heart-breaking blue eyes. The feeling I had was like looking at a toddler wearing his father’s jacket, where the shoulders are much too broad for his small frame. But as James became larger and heavier, we began to feel the reality of the diagnoses.
His incontinence was a challenge. Changing a cooperative baby is a doddle for an experienced parent; changing a six-year-old who wants to find out what is in his pad and then eat it, is another matter.
He became more rigid in his behaviour. He developed obsessions, such as wanting only to watch Teletubbies or Fireman Sam and having tantrums at anything else. He couldn’t cope with the unpredictability of TV, needing instead to control his characters by constantly rewinding videos. He must have watched Naughty Norman Price steal an apple about a thousand times.
He developed a phobia about going out. He would attack his brother and little sister if we tried to get him in the car, and was often terrified of leaving the house. He would be awake for hours each night and needed to be checked in case he had a fit, or hurt himself with manic rocking and bouncing.
All of this happened so gradually that we didn’t see how destructive it was; we just felt as if a dark blanket had been lowered over our household, slowly suffocating us all. We had no sleep and no liberty.
I began to dream of walking into our local reservoir until the water closed over my head and left me in a cool, noiseless vacuum. I didn’t know that this was called “having suicidal thoughts”. I began to notice reports on the news of women who really had killed themselves and their disabled children, not wanting to leave them behind. One day, I was sitting on a bus when tears began to run down my face and I just couldn’t stop them. I went to see my GP, who diagnosed me with severe clinical depression and put me on drugs. They helped a lot, but my marriage was still under severe strain. At one appointment with James’s consultant, my husband and I broke down in tears; the consultant asked us about respite care. We didn’t know what she meant.
Eventually, we found out that, as a disabled child, James should have been supported by social care from birth. An advocate from a charity approached the local authority on our behalf for a short break, but they refused. Even though I had been a lawyer, I was so low that I felt helpless and hopeless. But despite the dark blanket of depression, I managed to summon up the strength to appeal. After almost a year, we were granted two nights respite a month.
At first, to have even these little breaks was like a survivor in a desert being given a few drops of water. We managed to give our other children trips out of the house, like normal families. It wasn’t enough though, and the inexorable downward spiral continued.
One day I sat down and cried, realising that none of us could carry on as we were. James was suffering too. He was bored, frustrated, and sometimes terrified.
I didn’t know where to turn for help, but decided to start with something I knew: the law. I got hold of some textbooks. I realised that the answer lay in getting James into a residential school and that, to do this, we had to get his statement of SEN changed. I had to prove that he needed education outside of school hours. This sounded strange until I read that for a child like him, “education” could mean learning to walk and talk.
A school for life
I found the perfect school for him, a specialist boarding school in Devon. It seemed to offer a seamless approach to James’s time inside and outside class. The ratio of therapists to students, and the allocation of a one-to-one assistant, meant that he would get much more intensive teaching than at his day school, excellent though it was. At the new school, his teachers and therapists would also visit him in his bedroom, and make sure that his getting up routine included some stretches to help with his spastic limbs. Every communication exchange would also reinforce the idea that he had the power to make choices, if he made them properly.
The problem was that a place for James at the boarding school was going to cost £185,000 a year. Perhaps unsurprisingly, the local authority said no. However, unlike social care provision, education statements could be challenged at an independent tribunal, which is what I eventually did.
The tribunal was a scary process because so much hung on it. Some people from James’s school thought we were trying to get rid of him, which was distressing, although we understood why they could think that. We had hired a barrister, and so had the local authority, so it all felt rather dramatic.
The judgement came a few weeks after the hearing. It included a draft statement detailing James’s educational needs and how these could be met. On the very last page it set out the most important point of all – where James’s needs should be met. I hardly dared look.
As I summoned up the courage and read slowly down the page, there, at the bottom, was the name I needed to see – the name of the boarding school.
In January 2008, James, and the rest of the family, began slowly to build a new, more meaningful life. James became a termly boarder at the boarding school, coming home for some of the school holidays. I became a governor at his school. I visit James on my own twice a term. At other times, all of us visit, and take him to the beach or out on the sea in a motor boat – something he wouldn’t have tolerated before. Now, his face lights up as he takes in the sensations of the blue water, speed and salty foam. For a rare hour we shriek with laughter together as we enjoy the shared experience.
James has blossomed into a much more confident, fulfilled young man and can now cope with life and learning. However, the pain of being separated from him never leaves me – if my heart could make a noise, you would hear a ripping sound every day. I have had to accept a truth which I would have rejected before I had James: sometimes, if you really love someone, you have to let them go.
Jane Raca is the author of Standing up for James, a memoir about coming to terms with her son’s disabilities, and her fight to get support for him from the local authority:
In the next issue of SEN Magazine, Jane provides a parent’s view of the Government’s sweeping changes to the SEN system.