Otago Down Syndrome Association flying high

In this edition of our regional focus segment, President Glen Jelley from the Otago Down Syndrome Association shares what they have been up to in Highlanders country.

My name is Glen Jelley and I am the current president and regional representative for the Otago Down Syndrome Association.

First, I would like to give you a bit of background on how the ODSA came to be.

Before the current ODSA there was an Otago Down Syndrome Association that had stopped operating before we became part of the Down syndrome community, but I understand they did a lot of amazing work around the Otago area.

On the 20th of August 2008 we were blessed with the birth of our beautiful daughter Jessica who has Down syndrome.

We knew before she was born there was a high chance of her having Down syndrome so had done a bit of research and soon after Jessica was born joined the New Zealand Down Syndrome Association and Upside of Downs.

When Jessica was around 7 months old, we were introduced to Karola and Graeme Franklyn with daughter Emily and Victoria Murgatroyd with her son Isaac. Karola, Graeme and Victoria went on to become three of the founders of the new ODSA in 2010.

We joined a few years after Karola and Graeme Franklyn, Victoria Murgatroyd, Jean Elmes and Karen MacDiarmid had started a social group that later formally became the Otago Down Syndrome Association.

Karola was the president, Graeme the treasurer and Jean the secretary. There was a lot of work put in in the early years to get the ODSA off the ground and build the membership to where it is today at around 75 families. The ODSA covers a large area from south Otago (Balclutha) to North Otago (Oamaru) and up to Central Otago (Queenstown, Wānaka, Alexandra).

There have been some awesome social activities in the early years with Halloween parties, ten-pin bowling, outdoor parties with the Highlanders visiting as well as fire engines and lots of great memories and friendships were made.

Karola was our president for around 5 years. As a professional teacher she was deeply passionate about education for our children (and all children) and spent a lot of her time researching and presenting seminars around adapting the curriculum and better learning practices for our children. There were often emails that would arrive at midnight from Karola (I swear she never slept). The ODSA are deeply in-debted to the work put in by the committee in the early years as we certainly would not be where we are now without them.

If I got my years right, I joined the committee at the AGM in 2014. At that time, we were focusing on monthly social events and running three to four seminars around education a year.

Around this time there were a lot of younger families and we had a lot of fun at our monthly social gatherings. As the children of the families got older the social gatherings became less as the now teenage youth moved onto likes of the UPP club, which was originally formed in Christchurch and is more focused on social and life skills.

There were not a lot of younger families coming through the ranks, so the decision was made to cut back on the social gatherings to one each quarter.

In 2015 Karola and Graeme made the decision to step down from the ODSA committee and I was elected president.

The current committee consists of myself as president, Karl Walker as Treasurer, Jean Elmes as Secretary, Victoria Murgatroyd for Media, Lisa Gallacher for Education, Catriona McKee and Carlo Biggemann self-advocate.

We were lucky to get Lisa Gallacher on the committee in 2017 who is a private speech language therapist and is extremely passionate about speech/language and education for children with Down syndrome.

In 2018, we ran our first “Better learning Together Conference” in Dunedin where a range of professionals presented at our first one-day conference.

We would like to thank the Auckland Down Syndrome Association for having us at their conference to see how it was run to give us ideas for ours.

Our conference has gone from strength to strength over the last three years with on average 50 teachers, TAs, RTLBs, parents and caregivers attending each year from all over the greater Otago region.

We have a range of presenters presenting on topics such as numeracy, behaviour, sensory processing, social skills and speech and language.

We are excited with the direction we are heading with the ODSA and the conference. We develop it further each year going off the feedback from the year before.

This year we were extremely fortunate to have Grace Moreton, Katie Beamish and Beau Campbell who are all youths with Down syndrome as keynote speakers at our conference.

It was an immensely proud moment for the parents of the youths but also the ODSA.

We currently hold three to four socials per year concentrating mainly on education.

We hold a social on World Down Syndrome Day, one around Christmas and one or two in between.

We have done a lot of fun things over the last 10 years, such as the Taieri Gorge train trip, Highlands motorsport park visit, Wānaka visit, Dunedin museum and much more.

It’s been crazy times lately with Covid-19 and our last two social gatherings had to be cancelled.

In my position as ODSA regional representative I have had a few phone calls over lockdown asking for advice around resources for education and what we are allowed to use our respite days for and such things.

Generally, the families I spoke to over lockdown were coping well under the circumstances. I did have a couple of families comment that their children suffered from a bit of anxiety when it came time to go back to school.

In my role as Otago regional rep I have had the opportunity over the last five years to attend the NZDSA Youth Camp in Auckland in November each year.

The first year I attended as a support person and each year since I have been fortunate to take a youth from Otago to the camp. It is a great opportunity for the youth to attend these weekend camps. They are a fun weekend building confidence, new friendships and skills.

I am excited for the future of the Otago Down Syndrome Association and for people with Down syndrome.

We have an awesome website www.odsa.org.nz and our freephone number is 0800 682 463. Please check us out.