Hesperian Health Guides
The power of parents working together
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Working with other parents of children with disabilities can help in many ways. Working together can provide an opportunity to:
- share feelings and information
- give each other ideas about activities to help the children and the best ways to adapt activities for a particular child
- share ideas to help fit a child's activities into family and community life
- work together to make the community more friendly, safe, and supportive for children with disabilities
If you know there are other parents like you, but there is no parents group in your area, you may decide that it is up to you to start one. Some of the strongest, most active parents groups began because of one person's idea. As a group, parents can work together to solve problems. Parents working together can do more than if they each work alone.
Starting a Group
Find 2 or more parents who want to start a group. If you do not know other parents whose children cannot see well, you may want to include parents of children with other disabilities. A health worker may know of parents in nearby communities.
Plan when and where to meet. It helps to find a quiet place, like a school, health post, cooperative, or place of worship. At the first meeting, discuss why you are meeting and what you hope to do.
Probably one person will be the leader of the first few meetings. But it is important that no one person makes decisions for the group. Everyone should have a chance to talk, but try to keep the discussion focused on the main reasons for the meeting. After the first few meetings, take turns leading the group. Having more than one person lead each meeting will help shy members participate.
Learning to Support Each Other
Even when parents know each other well, it may take time to feel comfortable talking about feelings, experiences, and the challenges of raising a child with disabilities. These things take practice. Here are some suggestions for helping group members feel comfortable and trust one another:
Listen carefully to what others say, without judging it. Think about how you want others to listen to you, and then try to listen to them in the same way.
Try not to tell other people what to do. You can help others understand how they are feeling, and share your own experiences. But everyone must make their own decisions about the best way to care for their children.
Respect each person's privacy. Never tell others what the group talks about unless each person says that it is okay.
Planning for action
When parents work together they can take action to solve many problems. Here are steps for taking action that other parents groups have found useful:
Working together for change
Parents groups work on many kinds of projects. They may try to improve the economic conditions of families, the attitudes of communities, the government's laws and services for blind children — all as a way to help their children.
Most blind children come from poor families. To get more resources for their children, a parents group can:
- find ways to get funding for new projects to help children with disabilities
- help parents develop new job skills
- offer workshops on ways to teach and help children with disabilities
- develop groups and camps for the brothers and sisters of children with disabilities
Many parents groups have worked to educate the rest of the community about disabilities. They use discussion groups, workshops, radio programs, newsletters, billboards, street theater, and posters to help others understand more about disabilities.
Other parents groups have worked on projects to help children with disabilities become more active members of the community. For example, your parents group can:
- organize sports events that include children with disabilities.
- build a playground for all children.
- start a child-care center where children with disabilities can be cared for together with other children.
Some parents groups have worked to improve government programs and laws for children with disabilities. Your group can:
- contact people in government, like the ministers of health and education. Tell them about services your community needs, or about laws needed to protect children with disabilities.
- get well-known people, like entertainers or athletes, to speak out in solidarity with children with disabilities.
- write letters, pass around petitions, or organize protests if government officials do not improve conditions for disabled children.
- educate and involve newspaper, radio, and TV reporters in your campaigns.
Parents groups have also worked to prevent blindness and other
disabilities. For example, many children become blind because they
do not eat enough foods with vitamin A (see Chapter 16, "Why
Children Lose Their Vision and What We Can Do"). Your group may
want to raise awareness about the causes of blindness, or grow
vegetables that can prevent blindness.
Here is a story of how one parents group, Los Pipitos, is working to change the lives of children with disabilities.
Parents Are the Heart of Los Pipitos
In Nicaragua, there are more than 200,000 children with disabilities. Poverty is the most frequent cause. Eye problems and other disabilities often happen when children do not have enough to eat and live in crowded homes where infections spread easily.
Before 1987 there were few services for children with disabilities in Nicaragua. Then, 21 parents decided to form a group to "change the world." They called the group "Los Pipitos," which is a term of affection for children throughout Nicaragua. Los Pipitos now has more than 20 parents groups throughout the country. Together, these parents have become leaders in a national campaign to help children with disabilities.
Los Pipitos parents groups have:
- held workshops for parents on raising children with disabilities
- trained health workers about how to know the extent of a child's disability
- advised the Ministry of Health on the services needed by children with disabilities
All of these activities are part of Los Pipitos' dream to build a society that helps children with disabilities develop their full potential. Parents are the key to making this happen.