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My child with Autism and the ZCC in GaRankuwa: Rose and Phume
Background
Mrs. Rose Naane is a 47 year old Tswana-speaking female resident of GaRankuwa, an informal settlement situated in the province of Gauteng. Rose raised three daughters, of whom her middle child, Phumelele (Phume), has Autism. Phume is currently 24 years old.
Describe the composition of your family
I have three daughters, of which the eldest is a medical doctor in Johannesburg, Phume is my middle daughter with Autism, whilst my youngest daughter is 11 years old. She helps to take care of Phume. My mom also stays with us.
3. Describe your living environment?
We stay in a RDP house and I have extended it. It has 2 bedrooms, a lounge, kitchen and a bathroom.
4. When and how was your child diagnosed with his/her disability?
Phume was diagnosed with Autism at the age of 5 years.
5. Did you feel that someone was responsible for the disability? Explain.
Yes, partially I do. Phume was fine until she fell ill with Pneumonia and asthma. She was in hospital receiving intensive treatment and injections to help her get better. However, soon after this treatment her behaviour changed – she started rocking backwards and forwards, stopped speaking and even walked funny- she walked on her toes. When she recovered from the Pneumonia, she was sent to TMI in Johannesburg where she was diagnosed with Autism.
6. Explain the limitations caused by the disability(-ies)?
Phume experience various limitations – she cannot talk, her movements are strange and she rocks rhythmically. At times she did not sleep at all, she would sing right through the night. She is a very alone child, she does not trust anybody and will only stay with me or my mother. She does not like big groups of people and we cannot take her out of the house for long periods of time. Mentally she is underdeveloped and functions at the level of a young teenage child.
7. Does your child receive any treatment?
Yes, she is on Risperdal to calm her down & help her sleep.
8. Does your child attend a care facility or special school?
No.
9. Where does your child reside? Provide reason(s).
She stays at home with me. When I am at work, my mother takes care of her. She does not like to be with people she does not know, or strange places. She only wants to stay with me or her grandmother.
10. Does your child make use of special devices?
No.
11. Explain the mobility of the child.
She walks by herself and does not need assistance.
12. What does caring for your child entail on a typical day?
Phume is a very quiet child. She will just stay in one place and watch you what you’re doing and try to do the same. If I wake up, she wakes up, if I go to the kitchen, she goes to the kitchen. She listens nicely – even if I leave her and tell her to stay at a specific spot, she will stay there until I come back. She doesn’t bother us, she’s very sweet. At times it was difficult when she did not sleep or would cry for no reason, but now she is fine and we are not frustrated with her.
13. How does raising a child with a disability affect you on the following
levels (in the past and currently):
Emotionally
It is difficult. When she was diagnosed I could not understand why this had to happen with me. However, when they made her diagnoses they said that her speech could come back at the age of 6 years. I waited and waited, until today. She is 24 and she does not talk. I look at my sister’s child who is almost the same age as Phume and I cannot help to think that my child should have been like her at this age. It breaks my heart.
Socially
Socially I really struggle – you know, I literally cannot go anywhere. Phume does not want to stay with anybody else than me or her grandmother. When I am at work, my mother takes care of her, but when I go home, she is with me all the time. Not all people accept her, you know. They just look at us and will sometimes ask what is wrong with her. Her dad left us soon after she was diagnosed with Autism, because he said it was my fault that she was like this. When I stopped breastfeeding by the age of two years, I had to take her to my mother so that she could sleep with her. You know children when they are weaning. She fell ill with Pneumonia and asthma at my mother’s place and the father said if I did not stop breastfeeding her, she would be ok. And now, when a man shows interest in me, it is very my difficult – I cannot go out on dates, they have to come to my house. They have to accept and love Phume, otherwise they cannot be part of my life. Most men cannot cope with this. It is a very lonely life, but I am strong.
Physically
No, I am ok. I only have to supervise Phume a little – she does most things by herself. It is just when she doesn’t sleep that we get tired, you know?
Financially
It is very difficult. Phume only eats certain foods and I cannot just buy anything for her. Medically, we had to see so many doctors, go for treatment and even scans, EEG’s – everything. Her father used to help, but he passed on a few years ago and we have to cope on our own.
14. Explain the general attitude towards disability in your community and/or culture?
The people of GaRankuwa are not bothered with disability much. They don’t bother us, but they also don’t know much about disability. They will just look at us and leave us alone. Sometimes when Phume’s making rocking movements they will ask what’s wrong with her.
15. Do you participate in church services and other events in your faith community?
I go to church regularly and sometimes take Phume with me. Church gives me strength to go on.
16. Does your child benefit in any way from services, activities and interventions of the church? Explain.
Yes, I sometimes take Phume to church with me. She will go to church, but not for long, not longer than an hour. So I cannot take her to the services, which are three to four hours long. She will also tolerate the obligatory head gear we wear in the ZCC for a short period, but then she takes it off of her head. Because she doesn’t want to be without me or her grandmother, I cannot let her attend any church events by herself. Accept for letting us attend church and praying for Phume, they don’t do anything else with her.
17. Does your child participate in any youth ministry services or activities at your church? Explain.
No. She does not have friends at church. She only goes with me and her grandmother. She does not like to go out of the house. She did not go to Sunday School or anything like that, she will not go without us.
18. What efforts have been made by your congregation to reach out to you and your family since his/her diagnosis?
The church let Phume attend and will not bother us when I take her there.
19. What are your biggest concern(s) regarding your child?
My biggest concern is when I pass away. Who is going to look after her when something happens to me? My mother is already sick and old, she is still taking care of Phume, but she won’t be able to for much longer. Even Phume’s sisters, she knows them and they know her well, but you know, she cannot talk. They don’t know her like I do. They also have to work and live their own lives. Even if she has pain, she doesn’t show it often and she cannot tell you she is not feeling well. It is very difficult. I don’t know who will be able to care for her Iike me or her granny. I am very worried.
20. Do you have any suggestions as to how the inclusion of your child and family in the faith community can be facilitated or improved?
I never actually thought about this, you know? I am so used to cope by myself that I don’t really expect anything much from others, including the church. We are a private family that likes to stay home, so we don’t feel that we miss out on too much other than what we choose to. However, if I think a little about it, awareness will make a difference. You know, people in GaRankuwa do not know disability. Some are judgemental or don’t understand. I don’t see other people with children with disabilities at the church, and I know they are there. Where are they? They hide their children at home. Maybe they are shy? Even recently, I had to change Phume’s details on the funeral cover we have at church. Because she is older than 21 years she has to get the plan in her own name, but they want her to sign for it! She cannot write, how is she going to sign? In the history of the ZCC church, we surely cannot be the first people with a child with a mental disability. If the church cannot help people with disabilities with these issues, it just means they don’t know or understand. Even our pastors – I have never heard them talk about disability, ever. So if they do not talk about it, people will not know what to do or treat them. We never had a home visit or counselling in all these years. So yes, I like church because it gives me strength. But they haven’t been supportive in our journey with Phume much. I am not angry with them, but maybe in future they can help people with disabilities a bit more.
CHAPTER 1 INTRODUCTION
1.1 “It is about breaking down the walls”
1.2 Research problem
1.3 Literature overview and research gap
1.4 Relevance of the study
1.5 Personal positioning
1.6 Research challenges
1.7 Clarification of terms
1.8 Spirituality, religion and disability
1.9 Methodology
1.10 Chapter outline
CHAPTER 2 EPISTEMOLOGICAL AND PRACTICAL THEOLOGICAL APPROACH
2.1 Epistemology
2.2 Views of reality from a postmodern perspective
2.3 Postfoundationalism
2.4 A practical theological approach
2.5 Biblical and theological perspectives on disability
CHAPTER 3 DISABILITIES
3.1 Introduction
3.2 Defining disability
3.3 Language and culture
3.4 Classification
3.5 Types of disabilities
3.6 Disability in South Africa
3.7 The rights of children and youth with a disability in South Africa
3.8 Raising a child with a disability
CHAPTER 4 YOUTH MINISTRY
4.1 Introduction
4.2 Youth ministry and practical theology
4.3 The youth sub-culture
4.4 Youth ministry approaches
4.5 Challenges in youth ministry
4.6 Children and youth in South Africa
4.7 Youth ministry with children and youth with a disability
CHAPTER 5 EMPIRICAL INVESTIGATION
5.1 Introduction
5.2 Qualitative investigation
5.3 Structured interviews with the parents of children with a disability
5.4 Quantitative investigation
CHAPTER 6 PROCESSING AND INTERPRETATION OF DATA
6.1 Introduction
6.2 The exclusion of children and youth with a disability
6.3 Perspectives on youth ministry
6.4 The impact of the severity of a disability
6.5 Disability specialising faith communities
6.6 The inclusion of children and youth with a disability
CHAPTER 7 NO MORE WALLS
7.1 Existing walls
7.2 Engaging with the South African context: A reflection
7.3 Breaking down the walls
7.4 Let there be no more walls
Bibliography
