Mum says assistance from support group can benefit parents

Mum says assistance from support group can benefit parents

25 April 2018

WHEN Orla Watt’s two year-old son was diagnosed with autism, she was surprised by the lack of ready support.

After his diagnosis she said “nobody crossed her door”, leaving her alone to determine what autism meant for her child and his future.

With 25 years’ experience as a children’s nurse, Orla believes she was fortunate to have a professional insight into the condition.

Coincidentally, just weeks after her son was diagnosed, she began a doctoral thesis entitled ‘What mothers want when there is a child with autism in the family’. 

Armed with knowledge and expertise, she has now launched Northern Ireland’s first advocacy service for parents in Northern Ireland.

Parent Action reduces the isolation of children and young people with disabilities and lifelong health conditions like autism, ADHD, diabetes and mental health problems.

Parent Action will also give a voice to parents and ease the desperation many parents and carers feel.

As a community interest company, all of Parent Action’s profits will be reinvested in social need.

“As a nurse, I noticed parents had less of a voice and less of choice because their child had been diagnosed with a disability,” Orla said. “As a parent, when my son was diagnosed with autism, I was suddenly on the other side.

“After my son had his diagnosis, nobody crossed my door for six years or told me anything about autism and what it meant for him, or for his future needs.

“He was not getting the intervention he needed and that is discriminatory. I realised that more focus was put into diagnosis and a label rather than services after diagnosis. With autism, for example, there is a focus on autism and not the child.

“We are a children’s rights based organisation to help parents, who are experts in their own children as people.”

With autism affecting communication, Orla said Parent Action will help parents to speak on their children’s behalf. 

She added that this was essential as the majority of children with autism do not get the developmental intervention they need.

She said 350 families had been “empowered” by the service and five of these parents are now being trained, through a £10,000 lottery grant, to deliver a network of support to others de to the high level of demand.

“Every child has the same right to access the curriculum yet many children face barriers,” she said.

“We are here to listen to what parents need and often that means negotiating with the Education Authority and Health Trust.

“We are also raising awareness about the discrimination often faced by children with any sort of long-term health condition.

“They face barriers to the curriculum. They are being excluded from school every day and limits are being put on how much support children they can get. This affects their mental health and the mental health of parents.

“Every family will have different experiences and we will help them overcome those barriers.”