“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
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