Life is for Living 2005: 25 New Zealanders living with disability tell their stories

Rex - What’s best for my family?

Life in my whānau is very difficult at the moment and we are asking a number of agencies to find ways to help us. My partner and I have five children - Luke who is eleven, Bernice who is eight, Bradley who is six, Eliza who is three and RJ is two. We live in Papakura.

"Luke is autistic and has 60/60 vision. He has tunnel vision and is only able to see things right in front of him. Luke likes to listen to the radio, that's his main thing, he likes to read magazines and to eat - he likes to raid the fridge."

Luke goes to a special school where he has a teacher aide and lots of support. He can say words but not sentences, but he can communicate. Bernice is partially blind. She is coping really well at a normal primary school with a teacher aide for part of the time.

Luke is a handful, he needs 24-hour care. We could look after him when he was younger but as he has got older he is angry and bored and needs a lot of my attention. I am his main caregiver. Every year his needs are growing and he is getting harder to handle. He is biting and when he's frustrated the other kids are there to hit. He doesn't like any other kids being in the house so our children can't bring their friends home. He needs constant monitoring. Everything revolves around Luke, his needs and his tantrums. I am afraid for Luke's safety, the kids' safety, and ours too. When he was smaller we could keep to known routines but now he is bored and frustrated.

Stages we have reached - well, my partner has taken the kids and herself to her mother for a break. She is back now but our relationship is under stress and my relationship with my younger children is stretched because I give so much of my time to Luke. We don't function as a family - our other kids are missing out on so much. They are all copers, especially Bernice. They fit around Luke, but what sort of childhood are they getting?

I have given up my job - well, lost it really. My employer was very good, I asked for three months off to find a solution for my whānau, but when that time was up my boss had to ask if I could commit to more time and concentration at work.

"Shared care gives my partner and me some time to do things with the kids that we can't do when he is there - to give the other kids some time."

I was just not getting enough sleep and was too tired and stressed to be safe at work, so I had to leave. So money is an issue - it's hard to make ends meet, despite benefits and my partner doing what work she can.

We have been trying shared care. The first time, Luke went to a family for a couple of days but it was too hard for them. For the last two months we have been using intensive flexible family support arranged by CCS. Rosella, a teacher at Luke's school, has been taking Luke home to her family from Thursday to Sunday. He is happy to go to stay with her, and his behaviour is known to her from school. She knows how to handle him.

For me it's a chance to sleep. However, Luke is even more demanding of my attention when he comes home.

Two months ago I went to CYFS. I wanted them to be involved for Luke's safety. I told them I was scared I was so pushed I could lose it and harm him. At first they didn't want to get involved but I had to say 'I'm near to snapping, I'm afraid I'm going to harm him'.

"My hope for Luke in five years is that he is able to speak in sentences, communicate with other people and interact in a family. I hope he will be on his way to learning personal living skills that might mean he can be independent one day."

CCS, some other provider agencies we deal with like Taikura Trust and Spectrum, and CYFS are going to have a family conference to sort out Luke's future. I have made up my mind. I can't cope like this - I have to get a life for the rest of my whānau. I would not know what to do, how to live with myself if I hurt Luke.

I'm going to ask that Luke live away from us. We have really tried but we can't do it any longer. I hope they can place him with a whānau or family that can look after him and help him to be safe and learn some new behaviours. We will want to bring him home for a day quite often, so hopefully he will live near here. I hope there is a family that can have Luke. Our whānau needs a lot of help to see him on that journey.

In the next five years I want my other children to have a fun childhood like other kids - a real life for them that's centred around them and their needs. I want to be there for them, not them helping me like it is now. I want to be working to support my whānau.

We are in crisis and we are asking for help. There are people and organisations out there trying to find the best way forward for all of us, but with Luke's needs it's not going to be easy. This is the hardest thing I've ever done in my life, and I know it's the right thing, but I'm not handing him over to someone or something that's not going to be good for him too.

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