Experts and charities are warning that some children with a learning disability in Northern Ireland are at risk of being left behind due to social and health inequalities.
It comes as research suggests children with specific additional needs are not always catered for, with families struggling to find appropriate support.
Emma McKeown and Stephen Montgomery say they struggled to find emotional and practical support after their son Jaxon was born, three years ago.
Jaxon was diagnosed with Down Syndrome at birth and has already faced a lot of challenges, including major heart surgery just after his 1st birthday.
His parents praise medical staff but say they struggled to find adequate support in those first few weeks and months.
Emma said: “Jaxon is the first disabilities within our families. We knew nothing and didn’t know where to start. It wasn’t until a year or two down the line, people were saying you can do this or you can get this help here. We just really received nothing.
“I think we came home just like any other parent would which is fair enough you do want to live as normal as you can’t, but you aren’t a typical normal parent. You have so much to deal with."
Jaxon is due to start nursery in September and thanks to a pre-school programme has made progress with his mobility and speech and language skills.
Mencap say young children with a learning disability and their families should be identified as a priority group in key policy areas.
That's why many initiatives now focus on those critical early years.
Mencap NI is delivering the E-PAtS programme which was developed by leading experts in the Tizard Centre, University of Kent.
Crucially for those taking part, E-PAtS is delivered by parents and experts and has helped over 60 families in Northern Ireland.
Professor Richard Hastings from the University of Warwick says: “We know that they struggle in education, they might have more mental health problems than other children and they will face other challenges, their families will face other challenges as well.
"One of the difficulties is children are already being left behind. Families report they aren’t receiving the support they need early in their child’s life.”
The Director of Mencap NI said early invention was something all children should have access to.
Margaret Kelly said: “Our aim would be that every child born with a learning disability in Northern Ireland, or every child who has developmental delay and needs that extra support can actually access that support.
"For us that will make a real difference to what those children can achieve in life. But it will also make a real difference for families."