Each edition, CHAT 21 focuses on one region and this time JO MORRISON from the Northland Down Syndrome Support Group tells us about what’s happening in the Far North.
Since its inception in the 1990s, Northland Down Syndrome Support Group’s kaupapa has been able to fill the gaps and meet the needs of people with Down syndrome and their whānau across Tai Tokerau/Northland.
Started by parents who wanted to connect themselves and their families with others in similar situations, the group has grown over the decades. Those original children are now in their late twenties and thirties; they and their families are now experienced guides for the new whānau who join our community each year.
After many years as a charity, Northland Down Syndrome Support Group became a charitable trust in 2017. Its Board of Trustees currently comprises four mums who organise and run all events and activities as unpaid volunteers.
Our Chairperson and NZDSA Committee Representative is Bev Smith. She is part of the community nursing service and mum to Erin who has Down syndrome who is in her 30s, works for Northland DHB and is a member of STRIVE.
Our Secretary and Coordinator is Kathryn Sadgrove. She has a background in transition and advocacy, and a strong voice on consumer panels for Northland DHB. Her son, Thomas, has Down syndrome and is in his late 20s and loves to go fishing.
Jo Morrison is Treasurer and Education Adviser. She has a background as a secondary school teacher and senior leader and recently completed a Master of Education exploring how children with Down syndrome are being supported in a small number of mainstream Northland schools. Her daughter, Lucy, has Down syndrome, is seven years old and attends her local primary school.
Fiona Rowse is our fourth trustee. She also has a background as a secondary school teacher and is currently a guidance counsellor. Her daughter, Freedom, has Down syndrome. Now in her 30s, Freedom lives independently and contributes her voice to youth councils in the Whangārei area.
We also have three Officers of the Trust: Erin and Freedom, plus Karen Tucker who has served on the committee since its inception, holding the role of Treasurer for over a decade. She is mum to Daniel, now in his twenties, who loves to sing and has his own very definite sense of style (as those of you who know him can attest!)
To fill the gaps and meet the needs, Northland Down Syndrome Support Group provides regular activities and events to support the growth of our community and the building of a sense of belonging within its members.
From the birth (or even at pre-birth diagnosis) of a new baby with Down syndrome, Kathryn is available to welcome, support and offer a listening ear and reassurance to families. When they are ready, she connects them up with other parents/carers of babies or young children with Down syndrome in their area to facilitate mutual support.
We run two monthly activities that children with Down syndrome, their siblings and whānau can attend. On the first Sunday of each month, we spend an hour together at FlipOut Whangārei.
On the third Sunday of each month, we go to Whangārei Academy of Gymnastics for an hour of gym fun followed by a shared kai. Both of these activities are free of charge and we are incredibly grateful for the supports and discounted rates we receive from these two venues.
Adolescents and adults can also attend the FlipOut sessions and also have their own social club, GreatM8s. This is a group for people with Down syndrome and other intellectual disabilities and has been going for many years.
They have their own Facebook group and meet fortnightly for crafts, movies, ten pin bowling and meals out. Sometimes they have visiting speakers; recently they met with Emily Henderson, Whangārei’s new MP!
We also support our children and young people with Down syndrome at school by providing professional development workshops at the beginning of each year to teaching staff across the region.
Working in close partnership with local Ministry of Education Learning Support teams, we have trained over a hundred teachers, teacher aides, and SENCOs in Kaitaia, Kaikohe, and Whangārei over the last three years.
The population of Tai Tokerau/Northland is widespread, making it a real challenge for our families from further afield to meet up.
With this in mind, we have a very active Facebook group that keeps us all connected and we run two annual events that encourage our Down syndrome community of all ages to get together. These are the Christmas Party and the Hātea Loop Walk in Whangārei for World Down Syndrome Day.
For the last two years, the Christmas Party has been held at Tikipunga High School Hall, with a barbecue lunch provided by Rapid Relief Team, and entertainment and hands-on activities provided by Circus Kumerani. Santa visits too!
So, we all leave at the end with a gift for the children, a nice full tummy, and a big smile.
The Hātea Loop Walk to celebrate WDSD was first held in 2019 and attended by over 230 people. A number of local businesses supported us by providing refreshments and prizes.
Sadly, due to lockdown, the 2020 walk was cancelled. Instead, we took WDSD2020 online and shared photos of ourselves dressed up on our Facebook group page and raised money through an online auction. We’re hoping to be back walking the Loop again to celebrate WDSD2021!
We couldn’t do any of this work without our small team of hard–working volunteers, the funding provided by COGS and Lottery Communities, and all the local businesses who support our activities and events.
Thank you, all of you!!