We are really lucky in New Zealand to have all these organisations that support people with disabilities, because if Maria were born in my home country, Philippines, she would be hidden. Families with special needs children, hide them inside the house. They don’t want their children to get bullied, or perhaps they feel shame. If we were living there, we would not be able to survive financially because I don’t think there is funding for people like her. I am glad Maria was born in New Zealand because this is a good country to live if you have a child with a disability.
When the doctors first told me Maria had Down syndrome I cried. I was thinking about the future and what was going to happen to us. When I got home I just took it day by day. When her dad and I decided to separate, he was going to take her to Australia, but we thought she would not be happy there. It would be better if she stayed with me. He often say, ‘Thank you for looking after Maria. You have done such a good job. Maria speaks well and she is very is active. She is a good girl, and she has a great social life. She helps me a lot at home. When she goes to stay with her friends, they say that Maria can stay with them forever. She is very helpful.
When Maria was young she fell down easily, so I massaged her feet and legs every morning to stimulate the blood flow. Then, at two years old we trained her to walk. It took a long time but she did it. I think with Down syndrome the challenge is that even though you teach them certain skills, you always doubt yourself if they understand you and you wonder how are they going to respond. You don’t know! you just have to wait. You don’t give up. It takes time, but once they get it, they go on doing it meticulously. That is what I find with Maria. I never give up. I have to teach her through repetition.
Sometimes Maria forgets things, so before she goes out the door every day I remind her of things that are important. It is a constant thing. When she was at Allenvale, she came home from school, had a rest and then I had to remind her about her homework. She needs constant reminders. When she started at SkillWise I had to wake her up, and there was a lot of organization on my part to get us both going. But now she just does it by herself.
One day, I got tired of all this reminding. I said ‘Maria you have got to do this yourself. I am tired of it. You have your clock and you have your diary. You have got to get yourself up and get yourself ready to go to SkillWise. You get up at 7.00 o’clock, breakfast is at 7.30 am and then I will take you to the bus’. Now she is better at it.
As parents, we have to support them, but we should not do everything for them because they need to learn to be independent and we need to learn to allow them to discover things on their own. It is a fine line between guiding them, supporting them, protecting them and letting them live their own lives.
Something I do worry about is if Maria goes flatting she is not going to be able to save money or maybe she could have difficulties, but she is all right because I am here, I will always support her if she needs me. However, I worry if anything happened to me because if her sister is not here, Who is going to help her?
Maria’s salary and some of the allowance she gets goes straight into her bank account. If she wants to go to the movies she uses her savings, but if she needs a top-up on her cell phone I just give her money. She doesn’t know the value of money if she uses Eftpos.
I keep the Eftpos card for safety reasons. I feel that Maria can be vulnerable and I want to protect her. I also found that she uses her Eftpos card for buying unhealthy food. She is not allowed unhealthy food because of a heart problem she had when she was young. Many people think I am harsh with Maria the way I monitor what she eats, and how much she exercise, but I’m protecting her health. Most of my friends know that. When she lived with her dad she was very overweight and she barely walked. When she finally moved to live with me I did my best to walk with her every day.
When people ask why I let her have a boy friend, I say if you have experienced being a teenager and having a boyfriend, why shouldn’t they be allowed? If Maria has the chance to get married and buy a house, I would help her. But for now, I just guide her. I support her but my priority is for her to be happy and safe. Some people think she is too young because she only looks about 12 or 13, but she is 26 and I want her to experience the things other young people have. As long as they don’t do naughty things it’s no problem for me.