Belle told her story during an interview. This is the transcript
I’m a mother of two 23-year old kids who live with me part-time. The decision to have children was very important to me. Some people were negative about the prospect of me having a baby which made me feel depressed and inadequate as a woman. I knew it would be very hard, but having a baby was a priority for my life.
When I discovered I was having twins I suddenly had to work out how to manage two babies. My social worker visited me in hospital and said she had an idea to run by me. As I listened to her I was shaking my head to say no – her idea was to put my babies into foster care. I became upset and started crying. There was no way I would let my babies be taken away from me and I was prepared to fight for them.
After many calls to different organisations my social worker came to my hospital room saying she had contacted a service called Nanny Care SA who could support me to go home with my babies. I was so relieved. To make this all happen the social worker and I interviewed four nannies, and I chose a very young sixteen year old girl. In the back of my mind I knew she was a kid herself, but I had a very strong feeling that she would work.
Like most new mums, I was very stressed when I first got home from hospital. My nanny complained for the first six months that she wasn’t getting enough sleep and all I could say to her was “you are working my love”. I supervised and gave her instructions about how to care for my babies during the night while I had a good sleep so that I could fully care for my babies during the day. She fed the babies their midnight bottles and made sure everything was ready for the next day. Once the babies were sleeping through the night I changed the nanny’s hours so that she could help out with feeding and other chores.
What most parents could do in five minutes would take me ten minutes to do. With two babies, it took twenty minutes. I wanted, and needed, to have time with each baby so they could get to know their mum on a one-on-one basis. I use to play with them, talk with them, give them a tickle and ask “What is this on your face? Where’s your nose?” It didn’t matter to me that everything took longer. It was more important that I spent good quality time with each of them. At times, my spasms would play up, but they never got in the way of caring for my babies. I know for a fact that when someone different was changing their nappies they knew it wasn’t their mummy!
When the children were nine months old the Child and Family Health Service sister asked if I wanted them to attend daycare for one day a week. As I thought it through, the answer was yes, so that I could have a free day to do things like shopping, paying the bills and buying things for the babies. The daycare staff were very accepting of my needs and listened to me. They had a step at the front door and when they knew we were coming they would greet us at the main gate. I used to catch a taxi to and from daycare, but once again, this was a major barrier. I had to make sure the taxi had two baby bolts to carry the two baby capsules, as well as my wheelchair. All in all, the drivers were fantastic.
Now, at this stage in my life, I like to give back to people. I believe I have a duty to work with people living with disability because of my own experience of disability. It has made me a better, more understanding woman and I know firsthand how it feels to be limited in what I can do. I am a volunteer at St John Community Care and JFA Purple Orange where I am on the Trust Fund Committee, and spend one day a week doing various tasks to support the organisation. I am also a Board Member on the community care program.
I used to be a volunteer at Highgate Park, the former Julia Farr Association Accommodation Services where I visited the residents. I thoroughly enjoyed learning about their lives. I used to visit one person who had been a friend of mine earlier in life. She taught me a lot about having patience and understanding. I felt a strong commitment to supporting her to experience some good times in her life and invited her to my children's 21st birthday party where she had a great time and lots of laughs. Although she was a bit hesitant about coming it worked out really well for her. We used to go out for cocktails and have lots of laughs. We both really enjoyed that.
I am currently employed on a project at the Office of the Public Advocate where I work with clients living with disability. It’s a fantastic, powerful project to get people living with disability more involved in their own decisions. I believe it’s really important that people have a say in what they want to do. I listen to the client’s decisions with or without their supporters and sometimes make suggestions, but at the end of the day, it’s the client’s decision.
I really enjoy this work – it has given me a great deal of happiness knowing that people living with disability are making their own decisions. All people need to feel great about their own decisions whether it’s a bad one or a good one, we all make some wrong decisions in our lives, that’s how we learn.
Living life to the fullest
I live with Cerebral Palsy (CP). My Dad said to me once “If there’s something in life you want to do, you’ll do it! I will always be so proud of you Belle”. He brought me up to believe in myself and that is the way I look upon life. I’m aware that I am a person with a disability, but I don’t see myself as a person with disability; I see myself as a person and a woman first. I guess it has been my upbringing that has helped me cope.
One of the best things my parents did for me was treating me like my brothers and sisters. I had to do my chores, clean the dishes, make my own bed and keep my bedroom tidy. They expected me to do the same things as my siblings and I think that was fantastic. “Nothing different for Belle” they’d say. I had many friends with disability whose parents put them in a home. My parents didn’t even think about doing that to me, and I thank them for that.
I have never let my disability get in the way of living my life to the fullest. It just made me more determined to do things. As a young teenager I use to go to the nightclubs dancing, drinking and having plenty of fun with my girlfriends. We would get into all kinds of trouble. The more people I have in my life, the happier I am. I love meeting new people and hearing the story of their lives. I love spending time with both children. I see them regularly. My son is currently supporting me with shopping and my daughter and I enjoy going to the movies on a regular basis.
I also can’t get enough of letting my hair down with my girlfriends and male friends over a champagne or two, and catching up with gossip. I love all my girlfriends to bits and I believe they all are meant to be in my life. I love reading books. I love my music. I love my beautiful black cat ' Belle'. And I love going out for walks or rolls in my wheelchair. I love picking flowers. I love just sitting outside, and looking at all my plants. Watering my garden is so relaxing after a day at work. I also love to go to Semaphore and let my hair down.
Life, in general keeps me motivated to keep going. I think goal setting has worked well for me as a way of achieving things in my life because when I achieve my goals, I’m really happy. I have one life to live so I’m living it to the fullest. Again, it’s all about my kids; my life would be so different if I wasn’t a Mum. The kids made me stronger.
A lot of people were very negative about me having children because they didn't think I could do it and that just made me stronger. I was determined to do it and I have to say that I am proud of my kids. They have turned out perfectly and are two perfect little ‘big kids’. They respect me and love me, and will be there for me if something did happen. They don’t see my disability at all. I’m just their mum. Now that they have moved out, the next step for me will be to find the right partner. There is someone on the scene who I can envisage spending my older years with.
The suggestion I would make to other people living with CP and disability is to always have a smile on your face and be open with others. Don't be afraid to talk to other people about living with disability. People often find it hard to ask questions and we can help them to learn about disability if we are willing to talk about it. I believe if you smile, people will come up and say hello to you. I think it's important to be positive and just live your life to the fullest. I’ve tried to do that and I think I’ve succeeded. I guess as people get older, it does get harder but you can’t give up, you’ve got to take it day by day, and still be positive, and still have that smile on your face at all times.
© Belle 2012. Except as provided by the Copyright Act 1968, no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior written permission of the author