During his life, we had support from many organizations but the most important thing that helped us was to discover what we wanted for Jesse. We made a plan, set a goal. Started off small by working out the ideal life wanted for him and then try and make that happen. Rather than drowning in all the problems and issues we had, we had a goal in mind. That helped me because everything was so overwhelming, but once we worked out what we wanted for Jesse, it made the picture a bit clearer and we tried to find the avenues to do what was needed. It took a long time, but we got there.
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.
He could move to a home, but we are anti-homes. We don’t believe that homes would give Jesse the life he deserves. I have worked in a care home. The staff do as much as they possibly can, but there is limited funding and limited resources, so you have one staff member to five clients and Jesse needs one on one care to get anything out of life. In a home, Jesse wouldn’t get the care that William and Lucila provide for him, for example.
William has been with us for so many years and they have formed that bond which extends to all his family and their Christian congregation. We have really good carers for Jesse now. They are really flexible. It is great to have them backing me up. I feel supported. I am not on my own.
Jesse has a genetic disorder. Mum didn’t know when she was pregnant and only found out after he was born. They didn’t have the technology to find out exactly what was wrong until he was 12. A translocation of chromosomes is what it is called.
When Jesse was born, mum struggled to come to terms with his condition. Then, she decided to put her foot down and said, ‘No, This is what God has given me. We will have to get on with it and give him the best life possible’. She made that decision while Jesse was still in hospital as a baby.
From early stages of our lives, we realized that he could understand a lot more than what was expected of him. If I say, ‘I will get your dinner’, he will go straight to the table. I just talk naturally to him. I know he understands me. There are some things he will do to communicate. He will sit at the table to let me know he is saying he is hungry. If he wants to watch TV, he will to go and sit on the couch and he waits for me to turn the TV on. Jesse also uses sign language when he needs things like food or water.
We have a good time together. He is very happy and playful. He likes to play his own version of ‘Simon says’. He likes to mimic people’s movements.