How I teach self-advocacy to my hard of hearing children
When you think of your child, what do you dream for them in the future? A strong, independent, successful adult is most likely embedded into what you want for your child one day. Teaching your child with hearing loss how to be a self-advocate for themselves is foundational to your dream and their own dreams for their future.
Let me start off by confessing one thing – this concept is hard for me. Not because I don’t believe in the value of self-advocacy, but because I am a fighter myself. As a tiger momma and will fight to the end for my kids. I feel proud of that part of me. However, the tiger in me can keep me from letting my children see the tiger in themselves.
Marianne Richmond’s infamous children’s book called, “If I could keep you little…” beautifully illustrates the need for our children to learn, grow, and fight for themselves. On each page of Richmond’s book shares the lessons that are learned when we let go and let our children become. One page writes, “If I could keep you little, I’d kiss your cuts and scrapes, but then I’d miss you learning from your own mistakes.” When we as parents, let go and let our children become, we enable the skill of self-advocacy to take place. This act, allows for our children to become who they dream to be; who they were meant to be.
There are many definitions of self-advocacy. One simple way to describe self-advocacy is to “speak up.” This definition can be figuratively in some cases and literal in others. Self-advocacy happens when a person gives a voice to what otherwise would not be heard; when we”represent” a view; when we communicate a need.
The University of Minnesota stated that “The self-advocacy skills of students with hearing loss is a fundamental factor in determining success or failure across all educational, community, social and work settings.” That is a bold statement. If this skill is so important, it begs the questions, how do we, as parents, make sure our children have the skill to self-advocate.
Self-Advocacy Starts off Small
A child advocating for themselves is extremely simple at first. The initial steps are small and manageable. This is important to know as a parent. For me, the idea of my child advocating for himself felt impossible at first. I could not even get him to tell us “what” when he wasn’t hearing. Even getting my son to tell us when a battery died out in his hearing aids felt like a mountain. However. with time, we began to slowly watch as Ayden started to advocate for himself.
The first step to teaching self-advocacy is to teach ourselves. Access to a public education is your child’s right. Two laws back this up – Individuals with Disability Education Act (IDEA) and American’s with Disability Act (ADA). Children with hearing loss are protected, by law, to have access to equal education as their peers.
Additionally, learning from others is another a vital part of teaching our children to self-advocate. As parents, we need to remind ourselves that we are not alone. Utilize your ENT, doctors, audiologists, teachers, and therapists to help you along the way. Our hearing teachers were the ones that taught me how important self-advocacy was for my child.
Kara Graham, my son’s hearing itinerant, makes teaching self-advocacy a priority for all her students. Graham said that teaching students to advocate for themselves is so important and one topic is most passionate about. Her caseload ranges from preschool to high school. She has high expectations for all her students to be the one speaking up for themselves – not her, and not parents.
Push Your Child
If students are not given the opportunity to practice advocating for themselves they will not learn how to. When I am the one always advocating for my children, I am doing my children a disservice. He is being robbed of the chance to speak up for themselves. The strength and capability that is in our kids already won’t have the opportunity to shine unless we step back.
“The strength and capability that is in our kids already won’t have the opportunity to shine unless we step back.”
Stepping in for my children is an important part of this journey and one I love to do. However, as a parent, I need to know when to step back and let my child up. Our children cannot always depend on us to speak up for them.
Examples of Self-Advocacy
Understanding what self-advocacy looks like at different ages is important. My daughter is 9-months-old and has moderate hearing loss. Even at this age, she can learn skills that lay the groundwork for her future.
For example, every night, after we have done our bedtime routine, I have my daughter “hand” me her hearing aids. At this point, I am grabbing them from her tight grip most the time. However, this part of our routine is foundational in her journey to become a self-advocate. I put out my hand and ask her to place the hearing aids in mine. Next, I show her where I put them for the night. While these steps do not seem very significant they are fundamental for future skills. Eventually, my daughter will place the hearing aids into our designated spot every night for herself. I will give her opportunities to do so. And, when she does, I will cheer and celebrate. These actions are the first steps to help her learn to care for her hearing aids and to value them.
Another example comes from my son. When he turned three he started preschool at the public school. At the time, he was not expressing to us when he wasn’t hearing clearly. With the prompt of my son’s hearing teacher, they wrote into his IEP, goals for self-advocacy. We wanted him to start indicating to us at home and to his teachers when he wasn’t hearing exactly what they said. What this looked like was for him to simply start using phrases like “what” or “huh.” Honestly, at the time, it felt like a lofty goal. But slowly, over time, we became to hear him indicating when he missed what was said.
Let’s fast forward two years. Our goal has moved from Ayden saying words like “what” to him connecting his FM system himself. His teachers are expecting him (with a lot of prompting) to pass the FM system when a different teacher is leading. This means, at five-years-old, we are asking our son to physically hand the FM system from one teacher to another. It’s hard. Be he can do it.
At home, I ask him to put the FM system in his bag to take with us in the car. He presses the button to connect the Inspiro to each receiver – all-by-himself.
Just today, he connected the roger when we were headed to the park. The Roger said he was connected, but Ayden told me that it was not. I was confused. But I trusted what my son was saying. The technology was working, but hearing was not. What was wrong? And it hit me – ear wax. I took the hearing aid off and sure enough, there was ear wax clogging the entire tube. In that moment, I brought my son back in the house and we cleaned the ear wax out of his hearing aids – together.
As my children grow older, what it looks like to self- advocating will evolve. But, the basic need for my children to speak up for themselves will stay the same.
Barriers to Self-Advocacy
There are many reasons that a child will not speak up for themselves. Lack of education, not equipped with tools, embarrassed, shame, shyness, and the list can go on. To be a self-advocate is not easy.
To speak up means that students have to draw attention to themselves and it can feel uncomfortable. Our children will feel like they are inconveniencing others. But, no matter what the reason is that causes one to be silent, all individuals with a hearing loss need to know that learning is their right. As their parent, you need to know this too. Speaking up and asking for accommodations is a necessity for all people who are deaf and have hearing loss. Self-advocacy is tough, but the rewards are worth every moment of discomfort. Our children are learning to take steps into their rights as a human being. Never feel ashamed or shy about asking for what is already yours.
“Our children are learning to take steps into their rights as a human being. Never feel ashamed or shy about asking for what is already yours.”
Raising Independent Children
I want to raise my children to be self-capable, self-advocating, resilient, confident, successful, independent, and self-advocating adults. As parents, we can and need to expect to our children to speak up for themselves. They have it in them; they have way it takes. Small tasks, over time – teach and equip our children to reach beyond themselves and accomplish just about anything they want to do in life. If we could keep them little, we would, but we would miss them grow into who they were meant to be.
What’s your story? Share your story. We would love to hear ways that you saw your children advocate for themselves, or how you advocated for yourself with hearing loss. Take a moment and brag on your child; brag on yourself. Our HearingLikeMe community will be better because of your stories.
Two of her children were born with moderate-to-severe hearing loss, likely from genetics. They wear Phonak Sky hearing aids, or as they call them, their “Super Ears.”
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