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"You have a perfectly normal healthy boy, you are overreacting." Yet another wasted appointment. My son Tayla, known as TJ, is now five. At 12 months he was excessively clumsy and at 18 months he had his first seizure. His behaviour became violent and his speech was poor. He went from being a sleepy baby to not sleeping at all. TJ did not play with toys but was obsessed with the vacuum cleaner and batteries. Most worrying was his obsession with eating - anything and everything.

A consultant prescribed epilum for TJ's seizures. When I found TJ on the outside bedroom window ledge I felt his mental state was not being addressed. My GP sent me away and told me to read a book on parenting. It took months of wasted appointments before she referred him to a child psychologist. As TJ threw chairs at her and gouged my hands she said it was because of my bad parenting and put us on a behaviour management course.


I had heard about the disability living allowance and in 2000 I applied, stating TJ's constant need for supervision. My supportive health visitor arranged a motor skills assessment and TJ was found to have a global delay and poor fine motor skills. He also had a below average learning capacity. I sent this information to the regional disability benefits office, along with the stupidly long and difficult application form. After 14 weeks of waiting TJ was turned down. I was devastated.

Undeterred, I applied again. TJ, by this time three years old, was not talking, having serious accidents and still needing to be hand-fed. He was doubly incontinent and in nappies. His lack of fear put his life in danger. It broke my heart but I had to lock him in his room at night. TJ was not responding to the strategies the behaviour management course taught me. Instead of admitting that it was not behaviour management he needed, they reported me to social services recommending that TJ be put on the child protection register.


As TJ became tired when he walked, a new GP supported an application for a buggy. I applied for the allowance but was turned down three months later. I appealed and was turned down again. Although deflated I had to keep going. In the end I didn't get the mobility but in March 2002 they backpaid me more than £1,000 for two years. So in February 2003 I applied again thinking it would be easier. I was wrong as my claim was refused.

I appealed yet again for the allowance. TJ has now been awarded middle rate care and lower rate mobility. But this will not be paid for six weeks as the Department for Work and Pensions has a right to appeal. So my fight goes on.

My beautiful little boy is disappearing before me and entering his own world. I have no diagnosis or answers. TJ's world is confusing and frustrating with little respite. My energy needs to be spent on TJ, not on fighting for this almost unobtainable benefit.

Mel Rawding is the mother of three children with special needs.