Graduating high school
And just like that it was all over. Rory has finished high school. It was his last day at Inglewood High yesterday. I don’t think the enormity of it has sunk in for any of us. It wasn’t just his last day at high school, it was his last day in the New Zealand education system. Rory started primary school as a 5 year old in 2007 and has stayed on longer than many. He repeated Year 4 due to the impact of brain cancer and Year 13 because of bone cancer. While he is able to stay on another two years (until the end of the year he turns 21) he was ready to leave. Childhood cancer survivors are older than their peers because they are changed by the experience. In some respects they are premature adults. Being wise beyond their years makes socialization difficult. The disconnect childhood cancer survivors feel from their peers is one of the psychosocial issues they must face. They often relate better with adults that are much older than they are, and they understand concepts that their peers don’t. They think about life differently. Even though Rory is comfortable and among friends at Te Awhinatia he is ready to move on.
As the security and safety of the education system falls away it creates a dilemma for Sean and I. There is no longer a safe place for Rory to go for 35 hours a week, Monday to Friday, for 40 weeks of the year. Where does a young adult with a mild intellectual disability, a moderate physical disability and a severe sensory disability go? What do they do? Who do they do it with if they need one on one support? Who pays for the cost? Who manages this life? Rory is unable to go on to tertiary study. He will never work in a full time job. If he is lucky one day he may secure part time work. He needs transport as he cannot drive or use public transport by himself. There are a small number of disability support services in Taranaki. For the most part their clients have moderate to high intellectual or physical disabilities. Therefore Rory does not fit into these services easily or comfortably. We also don’t want Rory’s life to be constrained within a box labelled ‘disabled’. We want Rory to be active in the community, doing something meaningful, with people from all walks of life. To achieve this we have to create a new and unique framework for him. However it is challenging, time consuming and expensive. Many of the people and businesses whose doors I have knocked on only see Rory’s limitations and not his potential. While building a rich, full meaningful life for Rory after school is going to be a slow process of trial and error it is a goal we are determined to achieve.
It has been an action packed week. Rory attended field trips with Te Awhinatia to Pukeiti Gardens and the New Plymouth Aquatic Centre. He watched a movie with Natasha and volunteered at the SPCA and doggy day care. He has had several sessions at the gym with Sean and at home has been constructing wine carriers. Today we walked the Te Henui walkway in New Plymouth and he is now worn out on the couch playing Pokemon Pearl on his Nintendo.
We celebrated Sean’s birthday this week. It was an extra special one as he turned 50. Apart from grey hair, a slightly thicker waist line, and the odd wrinkle, he still very much resembles the 27 year old I first brought home to Taranaki in 1998. Happy 50th Birthday Sean. We love you to the moon and back xox