Abbie is a 20-year-old young woman who was born and raised in Christchurch. Abbie has a disability and severe epilepsy and has been supported through the Community Living service at Brackenridge full time since March 2018.
Before then, Abbie utilized the respite service. Abbie is nonverbal but communicates with her eyes. She loves going for walks, reading books and listening to music with fun lyrics. Mum Tracey was unsure what to do with her day when Abbie started being supported full time by Brackenridge. Tracey had been out of the workforce for a while caring for Abbie and realized she had a passion for helping people, plus a wealth of knowledge of the disability system. Great elements of a Community Support Worker! Tracey now supports people with intellectual disabilities and autism. She has some valuable advice to share with families.
What is the biggest challenge about your experience raising a child with a disability?
People’s attitudes! You can feel people judging you. Judging your decisions. Abbie and I both have rights that people kind of forgot about when they were dealing with us. You have to adopt a thick skin and not listen to the negative people. Trust is a huge thing. It takes a while to build trust and not feel anxious about everything going on. Each day gets a little bit better when you find the right team of people to help.
Have you been able to connect with many people in the same boat?
Not at the beginning. It was hard to ask for help when I didn’t know what we needed. We tried a mainstream school but they weren’t equipped to properly support Abbie and told us that she would never complete a full day at school. Abbie lasted until lunchtime most days. Abbie now attends Allendale School and really enjoys the time she has there. Everyone who is involved in her day knows how to support her. Some days are harder than others and some days Abbie cannot attend school due to her health but I feel so much better about how she is cared for. Through Brackenridge, I have been able to connect with more people who understand the hoops you have to jump through to get somewhere.
Is there anything you’d like to share with us about yours and Abbie’s journey?
I was tired of hearing the same thing from health professionals that didn’t offer many options. I kept saying to myself…. I can do this, I can do this for Abbie….I HAVE to do this. I made myself strong and told myself to harden up. There have been some hard times, especially when I was involved in developing a palliative care plan for Abbie. Which was something that took me a while to process. A lot of the time, I can’t plan things, like holidays. I just have to take each day as it comes, and that is exactly what Abbie does too.