My emotional struggle to understand and accept my son’s complex special needs
In the summer of 1999, I was sitting on Whitby beach with my husband and our two-year-old toddler. There was a strong breeze which kept blowing sand into our ice creams, but the sky was bright blue, and the sun danced on the surface of the sea. I didn’t know that the next day would bring a tsunami with it, one that would destroy the life I knew and leave me to rebuild a completely different one. I was only 24 weeks pregnant and my waters broke. Three days later, James was born, weighing just 1lb 12oz, with extensive brain damage. The doctors told us that he only had a 50 per cent chance of surviving. If he did live, he would, at the very least, have movement difficulties down one side. He might be much worse; they couldn’t say.
My memories of those first weeks and months are hazy, as all my experiences were clouded by shock. There were the times that James nearly died in hospital; then, when he finally pulled through, there was a sense of blazing joy. This was followed by his homecoming, and the terrifying responsibility of nursing him myself.
Lost on the tide
Gradually, the shock subsided, to be replaced by the day-to-day realities of James’s condition. At first, he looked like any other baby. No new-born can walk or talk, and James was handsome and smiley, so we did not have to deal with difficult questions. Then, as other children began to reach their milestones and he didn’t, James began to get left behind, like seaweed on the beach when the tide goes out.
The process was so gentle – almost imperceptible – that most of the time I just enjoyed having my baby and was happy that he was alive. Even when he was diagnosed with cerebral palsy, I was alright, and I felt safe in the little bubble of our own home. But when I went out into the wider world, things began to happen which started to pierce that bubble.
On the first occasion, I was in a jewellery shop getting a watch repaired, and James was in his pushchair. The shop was empty and the woman serving me had plenty of time to look at him. I saw that he had his left hand up in a classic spastic pose. “He’s got cerebral palsy” I said, and the woman smiled kindly and said that she knew. It was the first time I had spoken the words to anyone, and the pain of hearing that sentence from my own mouth was intense. After that, I began to tell everyone, rather than wait to be asked. Each time it became a little easier, like a wound which had bled, but was now healing and was thick with scar tissue.
Eventually, it became clear that James couldn’t walk, and since he was too big for his pushchair, he would have to graduate to a wheelchair. Having a blue badge and a wheelchair defined James as a physically disabled person, in a way that a diagnosis, invisible from the outside, did not.
The next piercing of our bubble came with the special school. I had never been to one, or known anyone who had been to one. Special schools were invisible parts of our society, rarely talked about and usually hidden away. Suddenly there was a nursery full of children like James. Seeing him in this context took my breath away.
Once the special school became involved with us, the labels defining James’s disabilities increased in number. We became familiar with the language of therapy and special education, with its profound and multiple learning difficulties (PMLD), speech and language therapists (SaLTs) and occupational therapists (OTs). The SaLT taught James to use pictures to communicate, and it confirmed what I had long suspected, that although he couldn’t speak, he knew exactly what was going on.
We learned that James’s right to be at the special school depended on him having a statement of SEN. This was a piece of paper which I had put away without even reading. I didn’t know then that some parents have to fight to get a statement, and that it was to become very important later in James’s life.
James had a couple of seizures, which the doctors had classified as febrile – temperature related – because he had been ill. The school nurses sent home a form headed “THIS CHILD IS EPILEPTIC” for us to fill in. He hadn’t been diagnosed as epileptic though, and I was seriously hoping that he wasn’t. I didn’t want James to face a lifetime of medication and hospitals. I took my fear and emotion out on the Headteacher, complaining bitterly about the form, which was hastily withdrawn.
Months later, when James had nearly suffocated in the night during a series of fits, I was only too glad when he was prescribed epilepsy medicine and issued with emergency sedatives. The form was quietly reinstated at school, and I helped to fill it in.
The last stab, which deflated our bubble completely, arrived out of the blue. James had some unusual behaviour which I had just dismissed as “James”. He didn’t like going out in the car, wouldn’t eat warm food, and retched when he saw anything bright orange. His nursery teacher sat me down and said she thought he might be autistic. By this stage, my feelings had become numb, and hearing this news caused only a dull ache. When the diagnosis was confirmed by his consultant, I realised that, at some level, I had known about his autism, yet as with the cerebral palsy and the epilepsy, I had wanted not to know. Now, in addition to the wheelchair and the anti-epilepsy medication, we had to adapt our family life for a member who was terrified by change of routine, and needed constant support to cope with the world around him.
It has taken 13 years to be able to say, without a lump in my throat: “My son has cerebral palsy and epilepsy and is severely autistic. He uses a wheelchair, and can’t walk or talk.” This acceptance has no doubt been helped by the passage of time, but it has also come about because these conditions are part of James and I love all that he is.
The tsunami, that washed away the world I knew, took with it my prejudice and preconceptions. I am no longer scared by seeing someone who can’t speak words making unusual sounds. I no longer get embarrassed by meeting people with a learning disability. I am not interested in how someone dresses or whether they live in the right part of town. Having James has taught me instead to look for the humanity within.
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: