| Support for the lives of children with disabilities and their families in the community |
- The approach of family support through our experiences with integrated childcare
Awaji Kodomoen is a day-care center for children with intellectual
disabilities in Higashi Yodogawa district, North of Osaka city. The Social
Welfare Cooperation, Suisen Fukushikai, received a commission from Osaka
city to run this center. We have created the necessary supports and services
for individuals and their families, such as: educational treatments for
mother and child; family support; after school care programs for children
with disabilities; outpatient consultation by specialists; and activities
for siblings of children with disabilities. We have been a privately-owned
corporation since 1978, and this unique position allows us to undertake
such work.
The basic principle of operation comes out of our experiences of integrated childcare at Kazenoko Hoikuen, a day-care center run by the same cooperation. The Kazenoko Hoiken, center, received a commission from the “Experimental and Pioneering Subsidized Projects” of Osaka city in 1971, and began accepting children with disabilities. By seeking the best childcare for each child, children showed remarkable growth. At the same time, we began to understand the limit of the supports available at the day-care center in working with children with intellectual disabilities. At the day-care center, we could not give enough consultation and support for the problems and difficulties parents were having at home. Especially, in the case of children with autism and intellectual disabilities persistent and complicated behaviors often manifested, but it was difficult to understand how the behavior occurred in association with what kind of situations. Some children who had developed interests in other people and had become attached to the care providers did worse when they began (mainstream) elementary school after graduation from the day-care center. The parents often had trouble managing the child’s worsening conditions and some children needed to enter special residential care centers or mental hospitals.
These experiences demonstrated it was not enough to provide just childcare in order to support a child’s consistent growth in the community. We recognized that we also needed to provide support and after school care to both the children and their parents throughout the child’s education and not only during their attendance at the day-care center.
As a result of these experiences, our corporation established “Kazenoko Sodachien”, a day-care center for adults with intellectual disabilities, in 1986. We also opened three welfare work centers for people with disabilities and four group homes. In 1999 we started “Kaze no Wa”, a community life support center, based on the practices at Awaji Kodomoen. We are now able to support people with disabilities and their families consistently through infancy to adulthood.
- Building better relationships by encouraging parent and child attendance
At Awaji Kodomoen not only children with disabilities attend, but mothers and siblings also come to the center for parent and child attendance days. The staff try to support the mothers to understand how their children are feeling, what their children want or how to identify when their children are struggling by observing their facial expressions and behaviors. They encourage parents to do this by spending time together such as playing and eating meals with their children at the center, which allows them to build emotionally accessible relationships.
For example, boy A suddenly started to hit his head hard on the floor. A’s mother was surprised by the behavior, as she could see no immediate cause for it.
However, staff observed the reason why A started to hit his head was that his mother went to take care of his younger brother and feeling jealous, he (A) couldn’t express his feelings to his mother. Boy B’s toy was taken by his friend. After that, he turned on a faucet and kept running water and didn’t turn around after his mother called. Mothers may often find it difficult to see the relationships between two situations. They don’t appropriately respond to these behaviors in their children. From staff’s viewpoint, B was upset, because B was probably frustrated by not being able to say no to his friend or to ask his mother for help who was next to him (B).
Parents may not understand the meaning of their child’s behavior because they don’t always recognize the relationship between situations, so they see the behavior as a result of the child’s inherent disability, rather than a reaction to the environment. However, the trained and experienced staff could observe A’s jealousy and suggest to the mother that she ask a staff member to assist with the younger brother. As the mother could turn her attention to A, he stopped hitting his head, asked his mother to hold him, and calmed down. B started to cry when his mother sympathized with his frustration and comforted him. Thus, it affirmed that A’s self-injury and B’s persistence resulted from not being able to express their feelings to others. Parents were encouraged by the results, and relieved to better be able to understand their child’s feelings.
At first these children avoided others or didn’t show an attachment to their mothers, but as their mothers’ understanding of their behavior increased, their reactions changed. Consequently, the children began to feel more confident and comfortable expressing themselves more directly. If a child endures is unable to express him/herself when they are worried or upset, they may act out through disruptive behavior that people around them may not understand. However, if you can understand the relationship between a child’s behavior and his/her environment, you can respond to him/her more appropriately. When a child feels understood and supported, he/she is able to express his/her feelings more clearly through facial expression, gesture and words. As a child feels more understood by the people around him/her, he/she becomes more emotionally stable and interested in friends, allowing his/her interpersonal relationships to develop naturally.
It can take a long time and a lot of energy to build such relationships, but the end result of a mother better able to communicate with her child is well worth it. The stresses of parenting decrease as parents receive more enthusiastic and positive responses from their children.
- Understanding mothers’ and families’ problems and difficulties
It is important to support mothers by listening to their or their families’ problems and work with them to address problematic family relationships allows them to take better care of their child.
Mothers’ problems are bigger than you imagine. For example, when a mother finds out about her child’s disabilities, there is often confusion shock, feelings of guilt, and an urgent sense, “We must be able to improve our child’s disabilities somehow.” Also there are various problems that arise from centering one’s life around a child with disabilities, specifically involving the relationships with siblings. It can be challenging to give all siblings equal attention, and many parents may have higher and somewhat unrealistic expectations for other siblings’ behaviors. Frustration over a father who doesn’t cooperate, conflict over grandparents, and intolerance or lack of understanding from neighbors, are all serious problems that many mothers face. These problems become an indistinct combination, and a big burden to mothers. It gives a big influence on their child.
Mothers often need a place where they can speak with and get support from trained individuals. We listen to mothers’ problems and help them to sort out their feelings through private consultation or counseling at our center. We also set up a place for exchange, allowing opportunities for mothers with similar problems or mothers who have graduated the program to meet and discuss their experiences. This opportunity for exchange is extremely popular, because listening to other mothers' story, they feel uplifted, “I’m not the only one who is struggling.” or they may rethink the ways they are responding to their children based on others' experiences and advice.
In addition, we listen to the fathers’ perspective. Addressing the feelings of both the mothers and fathers allows us to build a basis for co-operation in supporting their child. We also can mediate problems between parents in some cases.
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