A child with Tourette’s syndrome has told Mid Ulster District Council about the difficulties of living with the condition.
Deaglan McCallion and his parents addressed members of the development committee meeting last week, as part of a presentation from the Empower Project.
The Empower Project is funded by the national lottery community fund and aims to support families who have children under 12 with Autism, Dyslexia and Dyspraxia, ADHD, Tourette’s Syndrome.
It offers webinars to training sessions to parents/carers, educational and health professionals and also activities for children during the summer holidays.
The presentation focused on the daily challenges faced by those who have Tourette’s syndrome, a neurodevelopmental disorder which as many as one in 100 individuals show signs of, with most associating the condition with verbal or physical tics.
Tourette’s syndrome begins in children between the ages of two and 18 with the average age of onset between six and eight.
Following the presentation, which featured a real world insight into what life is like with Tourette’s from Deaglan, his parents addressed the chamber.
They asked members for their help in getting more awareness of the condition out to the local community.
“It can be hard for us when you are out in a shop as a family and you have staff members pointing, laughing and sniggering,” said Mrs McCallion.
“We have been refused from the cinema and so many different places and Deaglan has a human right to be a child too so we really would appreciate help and support in raising awareness of this condition.
“There is really very little support for those with Tourette’s syndrome and I don’t really know what more I could say other than please can you help us.”
Chair of the committee, Councillor Dominic Molloy, thanked the McCallions for the insight into their lives and stressed his belief that “awareness and education will help break down barriers”.
His Sinn Fein party colleague, Councillor Ian Milne said the excellent presentation really did show the reality of life for Deaglan and his family.
“For 10 years this family has not had a break, there is no respite or anything else,” he said.
“I think this council, which is a very caring and supportive council and recognises all the needs of those in the community, should be seeing what more we can do to raise awareness and support for these families.”
Councillor Catherine Elattar said her major takeaway from the presentation was the importance of the need to “be kind”.
“There needs to be more awareness of Tourette’s syndrome,” said Councillor Elattar.
“The thing that sticks in my mind the most from this presentation is Deaglan’s words ‘be kind’ and that is the message we should take way from tonight for everyone.
“I think the council and other organisations in the local community could do with having awareness raised and further education on these issues.”
Councillor Barry Monteith said it was an area he had some knowledge of and thanked the McCallions for the presentation.
“It is important we see this and the very least we can do is to listen and learn from this and raise awareness around the difficulties those with Tourette’s face on a day to day basis,” said Councillor Monteith.
“What struck me is the not being allowed into the cinema and shops. Council would have funding for training retail staff and this may be worth building into that training and maybe through economic development we can look at Tourette’s syndrome friendly shops or something like that.”
Councillor Cora Corry thanked all involved for the presentation and said that anything council can do to assist those with Tourette’s syndrome it should.
Following these comments, Deaglan told the chamber how positive he found the experience.
“I found this amazing,” he said. “Everyone on this call has been so kind, everyone has been amazing, you are all so kind.”