Hesperian Health Guides
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A parents' group changes Irlandita's life
A mother in Nicaragua, named Rosa, began to suspect something was not right with her daughter Irlandita. Irlandita did not respond when her name was called, and only reacted to very loud noises.
Worried for her daughter, Rosa took Irlandita to a doctor when she was 16 months old. The doctor was very cold to her, and said only, "Your child can't hear anything. Bring her back when she's 5 years old and we will see if anything can be done for her." Rosa left feeling more frightened and lost than she had been before the visit.
On the way home she met a friend who suggested that she make an appointment with Los Pipitos, a community organization. Los Pipitos was started by a group of parents who wanted their children with disabilities to have the opportunity to develop fully.
Although the doctor and staff at Los Pipitos gave Rosa the same diagnosis — that her daughter was deaf — they also gave her hope for the future. They explained how with special help and extra support from her family, Irlandita could develop just like a child who hears normally. With the support of other parents at Los Pipitos, Rosa began to feel confident that she could make a difference in Irlandita's life.
Now Rosa is an active member of Los Pipitos and she works to give other parents the same help and friendship that she herself found when she needed it.
Thanks to the support of her family, and the care given at Los Pipitos, Irlandita is an expressive, caring, happy, intelligent, and confident girl. She can communicate and is able to attend a regular school.
Starting a group
If you know there are other parents with deaf children in your community, but there is no parents' group in your area, it may be 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.
- Find 2 or more parents or caregivers who want to start a group. If you do not know other families with deaf children, you may be able to find parents of children with other disabilities. Or a health worker may know of parents in nearby communities.
- Plan when and where to meet. It helps to choose a place where everyone will be comfortable talking, perhaps a room in a school, health center, 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. Try to keep the discussion focused on the main reasons for the meeting. After the first few meetings, take turns leading the group. Having different people lead each meeting will help shy members participate.
Learning to support each other
Even when people know each other well, it may take time to feel comfortable talking about feelings, experiences, and the challenges of raising a child who is deaf or cannot hear well. These things take practice.
Here are some suggestions to help group members feel comfortable and to trust in each other:
Listen carefully to what others say, without judging them. 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 is okay.