President’s Pen

By Kim Porthouse

Hi everyone, It’s hard to believe we are a quarter of the way through 2022 already and World Down Syndrome Day (WDSD) has already been and gone. It was great to see another good turnout for our WDSD online event, the ‘Big Connect’, thanks to all who joined us. I would also like to thank Zandra and the team for putting together such a great event. The theme for WDSD was ‘Inclusion means’. Inclusion is fundamental to achieving a ‘Good Life’ and the wonderful panel spoke across four areas - Human Rights, Employment, Sports, and Arts and Education. Zandra’s article has more information about the members of the panel. There was a huge amount of expertise involved and I sincerely thank each and every one of them for their time and knowledge. The event included an opportunity to join the conversation in break-out groups for each subject. From the feedback received, it was obvious there were some healthy and enthusiastic conversations in each group. The following week, another online event was held to launch our newest resource, Down Syndrome and Autism – Dual Diagnosis. This was another wellattended event, as there is clearly a need for information around dual diagnosis, and it was very interesting to learn that around 20% of individuals with Down syndrome have a dual diagnosis of Autism Spectrum Disorder (ASD) which is more than I had realised. As I'm sure some of you already know. my son Brendon has a dual diagnosis of Down syndrome and Autism, and from my own experience it can sometimes feel a lonely world when your child doesn't seem to be quite the same as their peers with Down syndrome, especially when it comes to communication, socialisation, and independence. For the most part, life with Brendon is pretty easy-going, with simple pleasures and plenty of happiness, but I also know for me there have been times when there have been additional episodes of grief that have snuck up on me, with life sometimes feeling like my child has a particularly hard and vulnerable road to travel. I also know from experience that meeting other parents of children/ adults who also have a dual diagnosis can be such a relief. There is just something comforting in knowing you are not on a lonely road and in knowing that someone else has that same level of understanding and really gets it. There is often so much to learn from each other, and being on a shared journey can be so empowering. At the end of the launch when there was an opportunity to chat amongst attendees, it was clear that parents would welcome more opportunities to come together. Because I know how important connecting with other parents is, I am excited that a further session was organised and the idea of a regular get-together has been discussed. If you missed the original event but think that you would like to be a part of this online forum and are interested in joining future zooms, then please email Zandra at neo@nzdsa.org.nz and ask her to include you in any emails for the link to join in. Also, keep your eye on the E-news the NZDSA sends out where future meetings will also be advertised. I really think this could be a great space for those of us on the dual diagnosis journey to be a part of wonderfully supportive group.

Brendan & Kim