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23 January 2021

Inclusion for all members of our society

Tuesday 5 January 2021 | Written by Melina Etches | Published in Features, Go Local


Inclusion for all members of our society
Children from the Cook Islands Down Syndrome Association were thrilled to climb onboard the Takitumu volunteer service fire truck for a Christmas treat. PHOTO: Martha Nikoia. 20122207

Parents and families of children/adults with disabilities or genetic conditions have battled for some time for their loved ones to be included and accepted in society.

A conversation between friends led to the registration of the country’s first Down Syndrome Cook Islands Down Syndrome Association (CIDSA) in early December.

President Tai Nicholas’ casual talk with Margaret Numanga, who has a young grandchild with the genetic disorder/condition, sparked the drive to call out to similar families and form the organisation.

It’s something Numanga feels very passionate about.

“Knowing what we’ve gone through, I thought of how other families are coping. Now we are set up, we are trying to rein support and profile the families to see what their priorities are,” she says.

A good turnout of 30 parents attended the initial meeting to formalise the group that is partnered with the New Zealand Downs Syndrome Association.

Nicholas says: “We want to raise awareness and create an inclusive community so our kids can be involved in everything like sports and the community events.”

“To include their needs and maybe send a team to the special Olympics, other Pacific nations have teams that attend these games, to get help with speech therapy and mobility and look at funding to train and obtain online speech therapists and have a forum where the families can come together,” he says.

“And we want to know how many children we have in the Cook Islands with Down Syndrome.”

Martha Nikoia and John Dando’s 12-year-old son Dryden was diagnosed at nine months.

Dryden Nikoia Dando. PHOTO: Martha Nikoia. 20122206

She is excited at the formation of the group.

“With our experience with Dryden, it’s great to have a point of call for advocating for our children and finding services and resources, medically and educationally for our children. This is a wonderful wonderful Christmas gift for our kids,” Nikoia says.

“We are excited, there’s a lot of ground work to be done, it’s the beginning of something useful for our kids.”

The family of three moved back to live last year, and the couple had a vision for such a group to cater for families such as theirs. 

“Something that is close to our heart,” says Nikoia.

Dryden was a few months old when the young couple moved to Australis where he was diagnosed.

“We were lucky there (Australia), we were young and we had family there to help us,” she says.

Well equipped with the services provided in Australia, the couple knew the Cook Islands did not have the qualified expertise for persons with Down Syndrome, but were confident enough to return home.

“Since moving home everything is falling into place, there is lots to do and we want for families to not have to leave home.”

Dryden will attend the Inclusive Education Unit (IEU) at Nukutere College when school resumes.

Elizabeth and Henry Nootai’s 13-year-old son Elijah also has Down Syndrome and is a student at the college.

She has seen the struggles firsthand with speech language therapy and physical therapy and welcomes the formalisation of the CIDSA.

 “It’s a great initiative, because I was trying to find ways in which to include my son in other organisations like Autism,” said Elizabeth.

The Nootais returned to live on Rarotonga in 2018. That year Elijah attended St Joseph’s Primary School then moved onto Nukutere College last year.

“When we moved back, he was embraced by the community in Arorangi, by the church, school, he’s a very social kid.

“He just wants to fit in, to be treated like a normal kid…”

Elijah Nootai in action in the Nukutere College cultural dance group 2019. PHOTO: Tokerau Jim. 20123101

Elizabeth has noticed the increase of children attending the IEU.

In 2020 there were 17 kids enrolled, she says.

She is passionate about the inclusive for all and now more than ever, holding people to account.

An experience she noted was during the island’s Covid-19 colour coded awareness period.

When she contacted the hospital to ask if Elijah’s medical diagnosis was noted in their system, she was assured it was.

“But they don’t, and the worse thing was when the Puna centres were formed during Covid, they stated there was only one person with a disability in the community of Ruaau… and it wasn’t my son,” she says.

“So, the data capture is quite tragic, not portraying the true numbers.”

Elizabeth is confident that the true numbers will surface and funding and assistance for the kids will become achievable with CIDSA.

“You’re always bumping heads with people, that’s what we do, so with this (CIDSA) - it can be out there in the forefront.”

All she wants is for the powers that be, “to just include our children.”

The Cook Islands Games were not inclusive, she says.

“Our children couldn’t participate…”

Elizabeth would like to thank Tai Nicholas and Margaret Numanga for getting everyone else on board and is looking forward to a better year for their children.

The CIDSA celebrated with a Christmas party at the Punanga Nui Market in mid-December and a meet and greet with Santa.

The Takitumu Volunteer Fire Brigade also attended the special day with the kids excited to climb onboard the fire truck.

Families who have children or a member of their family with Downs Syndrome are encouraged to come forward and register their children.

*Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small ‘packages’ of genes in the body that determine how a baby’s body forms during pregnancy and how the baby’s body functions as it grows in the womb and after birth.

Typically, a baby is born with 46 chromosomes, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.