While children with disabilities can be faced with bigger obstacles, the fact remains that they can learn to advocate for themselves and to voice their own wishes, wants, and needs. While developing good advocacy skills is important for all children, it is a critical skill for children with hearing loss.
Signs of independence emerge in the first year of life. Think of the baby who goes from being fed to feeding oneself or from asking for a toy to going to get it themselves. For all children, including those with a disability, it is important to be particularly intentional about transferring responsibility for tasks and decision-making to the child.
For example, young children should be answering questions on their own when someone asks, and not rely on caregivers to answer for them. By the time children with hearing loss are in the middle school years, they should be attending and participating actively (to the degree possible) in their own Individualized Education Program (IEP) meetings at school. They know what their needs are and should be encouraged to discuss them with the team.
From ages 11-14, most children should be increasing the ability to begin advocating for themselves. Advocacy does not happen on its own. It has to be encouraged by caregivers and by school staff. Caregivers play an important role and can support their children in developing independence. If a young child wants an ice cream, the child should order it at the store. The child should be encouraged to make choices about clothes, books, games etc. School staff also have a responsibility to build advocacy skills. Teachers should ask children to report when they are not hearing or understanding, and their behavior should be rewarded when they do.
What is Self-Determination?
Self-determination is the ability to make choices, take action, and believe that one can achieve goals. It’s an extremely important skill for teens with hearing loss to develop. It can help them be successful in school and in their careers. If teens have positive self-determination, they can confidently say, “I have the ability to determine what I want to do with my life and make it happen.”
Here are four ways that caregivers can help their children begin developing these skills.
- Set high expectations: Encourage your teens to set their own goals and support them as they work towards them. Give them ownership of their disability, and help them learn scripts to express what they need to help them communicate and participate. Encourage your teens to report when they do not hear or understand something.
By the time children reach middle school, they should be responsible for setting an alarm and getting up on their own, checking technology daily, and actively participating in IEP meetings. For children who are deaf or hard of hearing, that means they understand their hearing loss, what accommodations they need, and can communicate those needs clearly to the people around them.
- Guide them towards independence: Independent teens understand their disabilities and are able to manage them without grown-up intervention, or they know how to ask for assistance when needed. A way to ensure this is to practice choice making and problem solving early, and to continue through the teen years.
There are many ways to begin building independence. Start early and small. For example, elementary-aged children who wear hearing aids should be able to change their own hearing aid battery without supervision. By the time they are in middle school, they should be completely responsible for their technology and advocating for themselves in the classroom. In high school, students should be comfortable discussing the effects of their hearing loss with their friends.
Another way of teaching teens with hearing loss to take responsibility for their technology is to allow them more control on how they use hearing assistive technology. For example, if a teen chooses not to use a FM/ DM/RM systems* at school (which is a fairly typical issue), they can be asked to collect data on their academic performance while using the systems versus not wearing the systems. If their performance declines without the system, they may realize that their FM/DM system helps them with academic performance.
- Encourage self-advocacy: Self-advocacy is the ability to speak up about one’s needs and wants. Self-advocacy skills are critical in helping children develop self-determination skills. Children should learn early what it means to speak up for one’s own needs and interests. Building the confidence to speak up can start early. It will benefit the children greatly into their high school years and beyond.
One way to build advocacy skills is to practice responses that the children can use during specific scenarios. The parents can have the teens imagine going out to eat at a restaurant. The parents can prompt them to think about what could go wrong during the meal. “The food is undercooked, there is too much noise, and I can’t hear anyone talk. The waiter got my order wrong. It’s too busy and loud.” The parents can ask what part of those situations the teens can fix and how they would fix them. “Wave to the waiter and ask for new, cooked food. Ask to move to a quieter part of the restaurant. Ask the waiter to bring the right food.” The parents can then ask what the teens can’t fix, and how they might respond to those things. “Go to a quieter restaurant; come back later when it’s not so busy.”
In every single aspect of the children’s life, they will have to learn to speak up for themselves and learn to ask for supports when it’s needed and available. Teaching them to build these skills is critical to them leveraging their disability to their advantage.
- Talk about identity: Discuss with your teens how their hearing loss fits into their identity, and how they can disclose it in different situations. One easy way to approach this is to ask the teens to draw a picture of themselves. They may or may not choose to draw their technology. Either way is fine. You can talk about why they did not, if they didn’t. For older children, it may be good to have a group discussion with other children their age who also have a hearing loss. They should think about and discuss who they are and what they are interested in. Once teens fully understand who they are, they can look around to see what supports they need, who they can turn to for support, and why they trust that person.
Self-Determination is a Journey
Guiding children into adulthood is a journey on which all caregivers embark. Some children need more direction than others. Starting early and continuing to work on advocacy and other developmental skills will make it easier.
With the right guidance and support, children with disabilities can learn to build the life they want, living lives that fulfill their hopes and dreams. With some guidance and support to help them build self-determination and self-advocacy skills, these children can live a life full of adventure and success.
Speaking Up : Resources for Developing Self-Determination Skills
For children with hearing loss, there are many organizations and resources available to help guide caregivers in each age and stage of self-determination development.
Supporting Success for Children with Hearing Loss
Offers a guide for developing self-determination skills by age, from preschool through high school.
https://successforkidswithhearingloss.com/self-determination
ThinkCollege
A group that provides research and resources to ensure an inclusive higher learning environment for students with intellectual disabilities, including children with dual diagnoses (such as hearing loss).
https://thinkcollege.net
The Alexander Graham Bell (AG Bell) Association for the Deaf and Hard of Hearing
Offers several programs for middle school through high school-aged students to actively grow self-advocacy and self-determination skills. These programs are guided by professionals and involve peer-to-peer engagement and growth.
https://agbell.org/student-programs
Preparing for College Handbook:
Also offers a checklist of tips, tricks, and advice for students transitioning from high school to college.
https://agbell.org/2024/04/29/college-handbook
ABOUT THE AUTHORS:
Melody Bertrand is a freelance writer and communications consultant in Alberta, Canada. She has worked with the Alexander Graham Bell (AG Bell) Association for the Deaf and Hard of Hearing since 2008 in a variety of roles. She currently manages the association’s content creation, including as editor of Volta Voices (https://agbell.org/volta-voices). Melody has a journalism degree from the University of North Carolina-Chapel Hill.
Jane Madell, PhD, CCC A/SLP, LSLS Cert. AVT has been a pediatric audiologist in clinical settings for almost 60 years. She has written seven text-books and multiple articles. She presents nationally and internationally.
Gayla Guignard, M.A., CCC-A/SLP, LSLS Cert. AVT, is AG Bell’s Chief Strategy & Programs Officer. Certified as an audiologist (CCC-A), speech-language pathologist (CCC-SLP) and Listening and Spoken Language Specialist (LSLS Cert. AVT), she has both clinical and programmatic experience with individuals with hearing loss across the lifespan.
Read the article here.