The power of parents working together

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HealthWiki > Helping Children Who Are Blind > Chapter 15: Support for Parents and Caregivers > The power of parents working together

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In this chapter:

 

In this chapter:

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

Sometimes I come to these meetings tired and discouraged. But the energy of others gives me strength.

I know. When I have a problem, I always feel better after talking about it here.

I was so relieved when the group helped me understand the real cause of Bayani's blindness.

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.

Our group sent someone to talk with the National Association for the Blind in the city. Now a field worker who knows about blindness comes to some of our meetings.

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.

Pearl, I’m not sure I understand what you are saying.

Can you try to explain it again?

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.

My wife is still feeding Vladir. I am really feeling discouraged because he can’t feed himself yet.

Yes, I remember when Paulo was that age. I felt very frustrated because I thought Paulo didn’t want to learn to eat by himself. I remember arguing with my wife about it.

I’d like to hear how you helped Paulo learn to feed himself. That is something we will face in a few months with our daughter.

Respect each person's privacy. Never tell others what the group talks about unless each person says that it is okay.

Don’t worry, Eduardo. I would never repeat what you say here.

I know that. It’s a relief to talk freely.

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:

1. Choose a problem that most people in the group feel is important. Although many changes are probably needed, your group may be more effective if it works on one at a time. At first, pick a problem that your group has a good chance of solving quickly. Then, as the group learns how to work together, you can work on more complicated problems.

It seems we all have problems with child care.

I need child care for my 3 children. My mother cares for them now, but her health is getting worse.

I have a new job, away from the village. I can’t find anyone who feels comfortable caring for a blind child.

2. Decide how you want to solve the problem. List many ways the problem could be solved, and then pick the one that best uses your group's strengths and resources.

We could take turns. Each family could care for all the children one day a week. We all know how to take care of blind children.

We could pool our money and hire someone.

Arti is looking for work. She may be interested in caring for our children.

3. Make a plan. Members of the group will need to do different tasks to get the job done. Try to set a date when each task should be finished.

Mishri and Guddi, can you find out if other families in the village need child care?

I’ll find out how much we would need to pay someone.

I’ll ask Arti if she has taken care of blind children before and how much she would charge.

4. When you meet together, talk about how the work is going. Adjust your plan as needed if difficulties arise.

How is the schedule working out? Do we have care for each day we need?

No, we need someone else for 2 days each week.

Arti says she has never worked with blind children, but is eager to learn. And she won’t charge too much.

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

These mothers learned how to sew clothing so they could earn more money, work closer to home, and spend more time with their children.

Parents groups can work to make the community more friendly and safe for all children with disabilities. Often, involving your neighbors in fixing safety problems in the community is a good way to begin building

solidarity with people 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.

We share our children’s lives — their achievements and setbacks — and feel a deep sense of injustice when others reject them.

That is why parents and families are at the heart of Los Pipitos.

We reach out to other parents to bring them together, to share ideas, and to support each other.

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.

This page was updated:20 May 2021