Advocating for your child

Parents want what is best for their children. They also understand the needs of their child and are the best people to speak up on behalf of their child to get the services and support they need. It is an unfortunate reality that the services and support you think would benefit your child, are not always be available for a child with UHL.  As parents, you may need to go into bat for your child. And to do this effectively you will need to learn to advocate.

Advocacy is about speaking on behalf of your child to negotiate for services and support. The time where many parents with a child with UHL need to become effective advocates is when their child goes to school. But there will be many situations before school that your advocacy skills can benefit your baby. Finding early intervention and starting child care or preschool are all situations where you may need to negotiate for your child’s needs.

Being an advocate for our child is not always easy. You need to know what you want for your child. You need to be well informed. You need to plan and prepare. You will need documentation to support your arguments. You need to negotiate – to be calm but assertive.

There are a few things you can do in preparation:

• Maintain a good working relationship with the professionals working with your child. Ask them questions and make sure you understand the answers. Don’t be afraid to contact them; you will probably learn from each other’s perspectives.
• Become informed about unilateral hearing loss and possible effects and outcomes for children with UHL.
• Keep up to date on the research and any new or discontinued services for children with UHL. Joining a peak body such as Deafness Forum will keep you up-to-date on all issues around hearing loss in the community.
• Learn the rules, terminology and jargon. For example, Pamela Wright in her article, Advocating for your child – getting started, ⁶ says that terms such as ‘appropriate’ education or ‘access to the curriculum’ are more effective terms than ‘the best education’ when advocating for support at school.
• Keep good records. This may include reports from professionals or written notes from a phone call or meeting. A follow-up letter or email after a phone call or meeting will clarify for everyone what was said and what was agreed.
• Learn how to state your case clearly, calmly and confidently to achieve maximum benefit for your child.

In turn, you can teach your child to advocate for him or herself. You will not always be on hand to speak up on your child’s behalf. Give your child the confidence to speak up and be clear about their needs. Your child could benefit from meeting someone older than them with a unilateral hearing loss – sharing personal experiences with a mentor can provide confidence and guidance for young people negotiating their needs at school and the wider world.