My vulnerable boy deserves a good life
I’M a 32-year-old single mother to five-year-old Tobie, a cheeky, happy and loving boy who regressed catastrophically at the age of two, changing from a typically developing little boy who spoke in sentences, sang, counted, asked questions, played with his friends and enjoyed every second of the day into a withdrawn shell of his former self, with no connection to the outside world. He couldn’t speak or even make sounds, play or show any interest in other people. Within weeks, he’d completely gone. He was there in front of me, but I just couldn’t reach him. I tried, desperately, but I’d lost him to autism. Three years on, Tobie has the highest severity level of the condition, meaning that he needs substantial support at home and in school. He suffers severe separation anxiety when away from me and requires around-the-clock care. I’ve learned and put into practice hours of therapy, and Tobie has made slow but steady progress. autism still dictates his life to devastating effect, but he’s a happy boy when he’s at home or safely in the care of his Mummy. I’m proud to say his bond with me has never faltered. I hear what he can’t say and protect him from what he can’t withstand. But I’ve been unable to secure a place at a specialist autism school just three miles from our home because it’s over-subscribed. The local authority wants to send him to a generic specialneeds school, seven-and-a-half miles away. They say they’re confident this school can meet Tobie’s needs. If only I could believe that. Tobie has sensory processing disorder (sPD), a difference in his brain meaning he’s often overwhelmed by sound, sights, touch, vibration, sense of movement/balance and body position. It’s a huge source of anxiety for him. sPD has been described by verbal sufferers as painful or unbearable. anything from the sound of the tumble dryer to fluorescent shop lighting can overwhelm Tobie. The effects of this condition build up like a sensory traffic jam. It can be triggered by many factors, creating a meltdown in which Tobie will sob and cling to me, while I have no idea what caused it and, of course, he can’t tell me. The only way in which he’s happy to travel is in his pushchair. In a car or on a bus, he often gets distressed. The effects for Tobie run into all areas of his life and shouldn’t be underestimated. The anxiety he experiences is beyond his control. This is a medical problem in Tobie’s brain, not a behavioural issue. I’ve viewed both schools and the difference between them is obvious. The generic special school has basic facilities for all kinds of special needs and takes children from the age of two to 11. Its ofsted rating is outstanding and there’s no question that it’s a good school. But the autism school has a vast array of facilities specifically for children with autism and its staff are experts, even going to other schools in the area to share their knowledge. Children attend from the age of five to 18, so there’s no need for further transition once they’ve started. an over-subscribed specialised school requires additional funding and enough places for every child who needs one. It’s been proven that with adequate teaching in childhood, children with autism can go on to become independent adults. every one of them deserves the opportunity to achieve their very best outcome, saving the Government money in the long run. I don’t accept that there’s no answer to Tobie’s situation: there is one, but it comes at a cost. I know it’s a substantial amount of money, but Tobie deserves the chance to have the very best life he can expect, rather than being denied it by cost and geography. Is this the way we should be treating our most vulnerable children in Britain in 2016? I don’t accept that and neither should you. CHARLOTTE ORLOWSKI,
Perton, W. Mids.