Jesse is my brother. He is 24 and I am 25 years old, there are only 18 months between us. We have always been pretty close, probably because of our ages. I think I started changing his nappies as soon as I was old enough, and I started looking after him on my own when I was about 15. So we have always had a very close bond.

We grew up in Picton, which is a very small town. When we were young, there weren’t any special education classes in the area. In primary school, he was mainstreamed, but he had a teacher aide by his side. Then he went to college. He was mainstreamed in a couple of the classes, but other than that, he had a one on one teacher aide. He learnt hand signs, and a lot of hand/eye coordination exercises at school. He also learnt to ride a bike.

Jesse had hip surgery a few years back and from then, his mobility decreased considerably. He is getting better now with the help of a physiotherapist and a lot of hard work. He can walk from here down to his room without holding on to anything. I take the wheelchair if we are going out because he can’t walk for a long time.

Funding has been a huge challenge. Money, there is never enough to go around.
Funding organizations do an assessment every year and then, they decide on how much money he will get for that whole year. Family members have to meet the rest of it, which is why he is living with us.

Life with Jesse is hard to manage. I had to quit my job because it got too difficult for me to work and take care of him at the same time. I don’t really have much choice. That is our life at the moment. I take care of Jesse because I love him. We have a lot of family members who help out, but I feel like pulling my hair out sometimes. I don’t want to take care of him for the rest of my life. My husband and I eventually want to live on our own. We haven’t been able to do it as a married couple yet. In a couple of years’ time, when I finish my nursing degree, the plan is, we will move out. But who will move in with Jesse? We don’t know yet because we can’t pay anybody to work extra hours, let alone night shifts.

Finding the right carers for Jesse has been hard. Obviously, they have to get along with him, but they also have to get along with my husband and myself because they are in our home from 6.00 in the morning till often 8.00 at night. He has carers from 6.00 am because I am studying and sometimes I start school quite early and Joe works so he leaves at 7.00 in the morning.