President’s Pen

By Kim Porthouse

In this edition of CHAT21 the theme is dual diagnosis, meaning a diagnosis of Down syndrome and at least one other condition. We often think of dual diagnosis as meaning a diagnosis of Down syndrome and Autism, and this is one condition that around 20% of individuals with Down syndrome do have. However, for many members, their child with Down syndrome has a dual diagnosis of Down syndrome and something else. It may be one other or several other conditions such as visual impairment, hearing loss, hypothyroidism, ADHD, coeliac disease, leukaemia, or a heart or gastrointestinal defect to name a few. I’m sure this edition will hold something of interest for most. In the last edition, I spoke about Brendon and how he has a dual diagnosis for Down syndrome and Autism. I also spoke of the NZDSA’s new resource and the online forum the NZDSA is hoping to foster. It is exciting to see the development of these to help support those of us who live this particular journey. The new resource provides excellent information and an online forum has the potential to be wonderfully supportive, provide interesting insights, and be so valuable to not only those of us who have been navigating this path, but also to those who are seeking information and support as they begin such a journey. There is a wealth of knowledge and experience in our community, so my hope is that this can be tapped into and shared so that the road is easier for those to come. The good news is that there is now more recognition of this particular dual diagnosis and more research informing both parents and professionals alike. As mentioned above, for some, their family member may well have several diagnoses, just as my son Brendon does. In my experience, they fortunately don’t all hit at once! For me, my journey included Brendon being born with a heart defect that required open heart surgery at 6 weeks of age. He still has leaky heart valves which require monitoring but, overall, he thankfully hasn’t looked back physically since the surgery. After that, it became clear by the age of two that he needed glasses, then, at around eight years he was diagnosed with coeliac disease, and at around ten years with hypothyroidism.

The journey to a diagnosis with Autism was a long one. Throughout his school years, it was more and more evident that he was Autistic, however, our paediatrician was unwilling to carry out an assessment or refer him for one. We finally achieved the diagnosis after he left the paediatric system. We didn’t need the diagnosis to know he was on the spectrum, so nothing major changed after the diagnosis, but I continued to seek it because I believed he would need it to open funding doors as he got older. To be honest, it was a tough journey once out of the paediatric system and if I have one piece of advice to anyone I would say if you suspect Autism, do what you can to have a diagnosis sorted while still within the paediatric system. But if you do end up out of it, don’t give up! As parents we deal with each condition as it comes along and that just becomes an integral part of the person we love. I know for many, as it has done from time to time for me, it can all seem very overwhelming. For me, it has been the connections and friendships I have made through the Down syndrome community that have informed, guided, and supported me through our various journeys. Although at times it can seem quite a mountain, what I have observed over my time with the NZDSA and through my own journey is that with each diagnosis, we as parents build our resilience and strengthen our advocacy skills and we also become a source of support for others. These things are powerful forces and serve us well across all aspects of our lives so I for one choose to see the positives. Furthermore, a dual diagnosis doesn’t need to mean your family member won’t enjoy a good life – A couple of things that Brendon really loves to do (and comes within the territory of his Autism) is vacuum, sweep, and do dishes. Every time we went to a café, Brendon just wanted to clear the tables of dirty dishes and go out back and wash them. We have built on his interest in these things to build a purposeful life for him – for a couple of hours three days a week he goes to a café and does dishes – he loves it! Even though he needs a little support, he basically gets in and gets on with the job and he is part of the team and gets heaps of positive interaction from the others who work there. He also has a job two days a week cleaning the local college woodwork and metalwork rooms – he sweeps and vacuums to his heart’s content and gets paid for it! Now, more than ever before there is lots of information to be found on the NZDSA website and also there are new and growing opportunities to engage online through webinars, social media, and online chat and zoom meetings. So, I really encourage everyone to make the most of all these fantastic avenues to get information, grow your knowledge, and connect with others. Make being a member of NZDSA part of your strength, just as I have.