President's pen

Before introducing myself, I would like to thank and acknowledge Shelley Waters the outgoing President for her endless commitment to and positive representation of the NZDSA. Not only has Shelley held the NZDSA President role for the past six years, she has also been involved with her regional committees for most of her daughter Rochelle’s life, both in the Waikato and in Canterbury. In her role of President of the NZDSA Shelley provided much behind-the-scenes support to the staff of our organisation, which was truly appreciated, and her leadership nurtured a committee that was able to work harmoniously together, which is an attribute that I will strive to continue. I am pleased to have the support of Shelley on the committee for the next year as she continues her Zone 5 representative role for one final year.

Kim Porthouse, NZDSA President I am Kim Porthouse, your newly elected President of the NZDSA. I have been on the NZDSA committee for the past six years as the Zone 4 representative, holding the role of Treasurer and have been involved with my local DSA for most of the past 18-19 years, and also involved with the NZDSA for projects on and off during that time. I have two sons, my oldest son Chris (23) has left home but he and his fiancé live just a 10-minute walk away. My younger son Brendon is 20, he has Down syndrome. He lives at home with me and attends the Learning support centre at Waiopehu College in Levin. We live in Ōtaki, on the Kāpiti Coast and have lived in this region for 28 years. I am a midwife and I work at the Primary Maternity unit in Levin. It is my philosophy that diversity in our society is important and that all individuals with a disability should be respected and viewed as valuable and contributing members of their community. I view being involved with both my local DSA and the National DSA as a way I can foster the support of other parents of children with Down syndrome as well as contribute to the advocacy of individuals with Down syndrome to be valued and participating members of their community. I want to see every person with Down syndrome given opportunities that will enrich their lives and help them to reach their potential. I want to see every parent feel connected and strengthened. My roles as a mother of a child with DS and a midwife have collided together to create a particular interest in Pre-natal screening for Down syndrome and I am passionate around the ethics of screening. I want to see that the rights of women to be fully informed are being upheld so that they are able to make decisions around screening that are based on wellrounded information that respects their values and not only on information that is too often a one-sided, heavily medicalised view. I advocate for improved training of the medical profession so their knowledge is also well rounded and considerate of the impact they have on expectant parents. I contributed to the article in the last issue of CHAT 21 and as mentioned at the end of that article we are keen to hear your stories, experiences and views around screening. You can email us at editor@nzdsa. org.nz Recently Brendon was nominated by the Wellington DSA to attend a Youth Development Camp hosted by the NZDSA. This camp was for individuals with higher needs and we were privileged to be offered a placement. The event was sponsored by funds raised by Southern Stars for this purpose and I thank them deeply for enabling such an event. I am also so grateful to the NZDSA staff and youth support workers who gave so freely of their time and support, it was a truly enriching experience for both Brendon and I. Although there were a few wobbly and challenging moments, I was generally pretty proud of the way Brendon coped with being out of his comfort zone and his normal daily routines. I’m sure this was helped a lot by being amongst peers in the very supportive environment that was created by everyone involved. He got to participate in activities that would normally be out of his reach such as rock climbing and abseiling, so he was very proud of himself and he keeps going back with smiles on his face to watch over the videos on his iPad that captured his achievements. I gained so much knowledge and support from being able to network with the other parents that attended, I feel truly motivated and inspired – just what I need as I look ahead to next year and face Brendon’s last year at school and a year of transition into the post-school world! Kim Porthouse with her sons Brendon (middle) and Chris.