Brave families share their journey with special needs children as the government brings in experts to help

For many years parents and children with developmental concerns or living with a disability have had to endure the challenges on their own but since last year, the Ministry of Social Services recognised the need to bring in a scoping team of experts to look into helping the growing number of children suspected as having some form of disability.

This week that team is back with a Paediatrician to work with and help the families and children. A major part of the objective of this visit is to assess the children that have been identified by teachers and local health workers as possibly having some form of development concerns or disability.

Director General of Social Services, Gaylene Tasmania told BCN news that the Ministry is aware of the concerns raised by both parents and also the teachers from the schools.

“We are aware of anecdotal evidence from the experiences of our teachers when children start ECE (Early Childhood Education) as well as Primary, that there are some children that do need support more than others, and that number is growing. So now more than ever, we need to know why that is and try to provide early intervention.

Gaylene Tasmania was driven to ensure the progress of this project after her own family’s experience of having to travel to New Zealand to seek help for one of their children who was displaying signs of a learning disability which was then confirmed as ADHD (Attention deficit hyperactive disorder). She met some of the therapists and specialists and made connections with them which led to the start of the process to bring these experts to Niue as part of the annual visits by specialists for the Health Department.

“This is a new programme for us. We are launching a new specialist assistance programme and we hope that this will be sustained into the specialist visits on an annual basis”

Other parents this week share their experiences and their journeys with their children with special needs. For Shanta Hekau and her family, their journey started about 11 years ago when their eldest son who is now fourteen, started showing signs of delayed development, that he wasn’t meeting the milestones as his older siblings.

“When my son was three years old, I had a feeling that something wasn’t quite right but people had told me that boys were a bit more delayed than girls, and I had two girls previously.

“By five years old he had not spoken and I knew that there was definitely something wrong with him so we reached out to the hospital and they put us down to see the specialist, a paediatrician who visits regularly then, and she put us on the spectrum, the autism spectrum and then everything started to make sense.

“There were so many things that he was doing that were just out of the ordinary. He would line things up and he would not like to let anyone touch his things. He was very sensitive to loud sounds and he was sensitive to certain textures but of course, at the time, we didn’t realize it, we just thought he was a fussy child. When we had the diagnosis, everything started to make sense for us and then he finally started speaking when he was seven but he spoke English.”

“We were not a bi-lingual household at the time but because he had just finally spoken, we were okay to let him speak English. Now he only speaks English but he understands Niuean”

“Progress is progress in any little way and as a parent, you take what you get so that was a massive milestone for us”, said Mrs Shanta Hekau.

Shanta said that knowing what they know now and looking back, she remembers some of the children during her time at school who were labelled as ‘the naughty kids’ but maybe they were on the spectrum and were just misunderstood.

“After learning so much about this condition (autism) I remember in school there were so many students in school who were referred to as the naughty kids but now I think back, maybe they were on the spectrum but they were so misunderstood and because they were misunderstood, they were misguided”

Shanta said that “There’s a certain way to approach children with these kinds of conditions because they have needs that are different from the normal”.

For Angela and Richard Tuhipa this journey started 5 years ago when their youngest child was displaying signs of delayed development and after doing their own research, they also started seeing signs in their eldest son.

The Tuhipas are encouraging parents if parents suspect there is something not quite right with the development of their child or children to bring them to be seen by these experts and get them the help they need and also help for their family.

Angela Tuhipa said that it’s a process but is a rewarding experience to know that your children are getting the help they need and deserve. 

“It’s almost like a grieving process because you’ve got to start from scratch to figure out what it is that you need to build around them to be able to help them in life.

“Don’t be scared to get the help that your children need. We have to be better at putting our kids first and our families first and making sure that we seek out the help that they need.

It is a process that you have to go through but as parents who’ve had to do that, it’s so rewarding, once you go through it to be able to see that your child has got the help that they need. That they are understood because quite often, that’s the biggest thing is that they need to be understood”.

Richie Tuhipa said for men and fathers it can be quite challenging to accept that their children need help but it’s important to get over that first hurdle and to reach out for that help. 

“For fathers, we tend to focus on other things but the message is to get over it( hurdles) and bring your kids in and get them assessed and it will put your mind at ease.

Tuhipa said that the men, usually just leave their kids to their own devices until they get into trouble and that’s when they respond but ‘in cases like this, observe carefully and try to pick out certain things in your child’s journey”

Richie Tuhipa said that the process also needs parents and fathers to ‘re-educate yourselves’ and keep an eye out for the signs in their children.

There is a support group for parents to get together and share their experiences and find support for each other. Angela Tuhipa and Shanta Hekau are very active in helping promote public awareness about helping people understand children with developmental issues or some form of disability. The journey starts with you coming forward to get help for your child.

Gaylene Tasmania said that the group of child experts are on the island to help children get the right support and understanding of their disabilities, their parents and families, and the staff of the education and health department.  

Occupational therapist Arul Hamill is part of the team said that working in this field is about going on a journey with these families 

“We’re a team of therapists and colleagues like paediatricians who work with families and children who identify with some developmental concerns about what is happening with them when there is some interruption to development. So part of what we’re doing here is coming to support families and to hear their story really and to share is what’s happening for them and their journey and looking at ways in which we can hopefully help”.

Clare Stanley is a paediatrician and told BCN news that she is impressed with the work that the medical staff and families in Niue are doing to cope with children with disabilities with limited resources but it is important to raise awareness about the disabilities and that help is available.

“We come here and realize what an incredible job people are doing here with very little at your fingertips and parents working really hard to support their families. So it’s pretty difficult to address all those life goals when you have children with high needs and there isn’t any community support here.

“We’re hoping that by building awareness that community support will build from that because we would like not to have stigma around some of these challenges”.

Dr. Stanley said that early intervention is important but it is also important to find the solutions that work for the families in their journey.

Gaylene Tasmania told BCN news that this group will visit again later in the year in June or July and they will bring with them a special needs teacher. She is asking parents to take advantage of these opportunities to assess their children and get them the help they need.