Case Study - Linda Nicholls Sykes story
“Enjoy your child and accept them for who they are” is the advice Lisa Nicholls Sykes would give to the parents of a disabled child.
Lisa and husband Nigel have first hand experience of the tough times parents of a disabled child can face because their son Barney, now 7, was diagnosed with hydrocephalus at eight weeks old.
The couple, from Ashby de la Zouch, near Leicester, say that contacting ASBAH was the single action that really made the biggest difference to their lives, giving them access to information and the much needed emotional support.
Lisa said: “As well as having hydrocephalus, Barney is severely autistic.
He has no speech and his means of communication is very basic.
“If he doesn’t know or like someone he won’t make eye contact, in fact he tends to block them out.
“But he’s a wonderful, affectionate child, who is much loved by his family and he’s very popular at school.
“Barney may have problems communicating but he’s very clever in other ways. He certainly knows how to manipulate people.”
Lisa said that Barney was only diagnosed with autism in April 2006 even though she had recognised autistic traits much earlier on.
“It was difficult to know whether it was just an effect of the hydrocephalus in the early years, “she explained. “But I did notice that he did many of the things autistic children do such as flapping his hands, liking routine and being incredibly particular about the food he eats.”
Barney now attends a school in nearby Coalville for children with special needs, happy to travel there on the school bus.
“To begin with it was very hard letting go, especially as Barney has no speech,” Lisa said. “He had gone to my daughter’s playschool, where he had been very happy, but by the time he was four I knew that unless a miracle occurred, there was no way he’d cope in mainstream school.
“The school he attends is wonderful, with very enthusiastic, caring staff and the teachers say that he is developing.
“For example at one stage he wouldn’t ask for a drink, he would just sit there getting upset. “Now though he’ll go to the cupboard where the cups are kept so they know what he wants. It’s very slow progress but every step Barney makes is a huge achievement.”
Lisa said that she and husband Nigel are aware that Barney’s needs do affect the lives of their three daughters, Madeline, 10, Mariella, 8 and Beatrice, 3.
“They do have to put up with a lot, “Lisa said, “and we try to compensate as much as we can.
“For example they have a lot of dance lessons which are very expensive, but we want to treat them because there are many things which we can’t do as a family because of Barney.
“At their dance shows I can’t go into the auditorium to watch, I must stand outside with Barney because he gets very upset.
“But the girls know that although I can’t watch them dance on stage I will be there to do their hair and wish them luck, and of course I’ll be waiting there for them at the end.
“They love Barney very dearly and I think that having a brother who is disabled will help them develop into caring people who appreciate the needs of others.”