Doing vs. Knowing: Are You Raising an Excellent Self-Advocate?
Self-advocacy is a hot topic for children with hearing loss. For all children with disabilities, it is important to teach self-advocacy skills, but for the child with hearing loss, it is even more crucial. This is because hearing loss is an access issue, rather than a learning issue. Throughout life, people with hearing loss must use their advocacy skills to ensure access to the communication around them, whether at work, in the community (restaurants, doctor’s offices, etc…), or at social gatherings.
In this day and age, with technology as sophisticated as it has become (and it can only continue to progress from here), children born with significant hearing loss can be provided with technology that allows them to function in the hearing world. With an appropriate amplification fitting and with good listening and spoken language therapy, speech perception skills can be excellent in quiet environments and good to very good in noise and with soft speech, allowing the child with hearing loss to“fit in” within the mainstream classroom. However, none of the current technologies provide normal hearing. So, children with hearing loss still do not have equal access to instruction and communication. Thus, they still require modifications and accommodations. And while every teacher of the deaf and hard of hearing, educational audiologist, listening and spoken language specialist and hearing specialist works to ensure that access is equal and that effective communication is provided, it ultimately comes down to the child with hearing loss learning and using the self-advocacy skills necessary for making their needs known.
You can find many materials about self-advocacy for the child with hearing loss in textbooks and workbooks, as well as on the internet. There are checklists that exist which provide guidance about what a child should be doing at certain ages, including understanding of the technology, ability to troubleshoot, and ability to express listening needs to teachers, peers and others. Each of these skills is critical for promoting independence. However, use of these skills in all environments throughout life, often comes only after the child or adult is comfortable with his/her hearing loss and diagnosis.
I have learned that those individuals with hearing loss that best advocate for their needs are those that are comfortable with their hearing loss and see it as a unique characteristic, rather than a disability. I have had several children that I worked with who could easily rattle off how their hearing loss impacts their listening and communication skills and can clearly articulate the accommodations needed when not hearing optimally (e.g. moving seat, getting closer, asking for clarification, using the pass around microphone). However, why is it that often these children are not using these skills? Sometimes, it is because they don’t know what they are missing, but other times, it is a matter of self-confidence; the fear of standing out and being different or making their disability visible.
It has been my experience that the younger we start promoting an understanding of the impacts of hearing loss and a strong sense-of-self, the better. While I do not have the magic answer for each individual child (because every child is different), I do believe that the earlier the process begins, the more likely the child will accept his/her hearing loss as only one element of self-concept.
So What Can You Do?
Be a Good Model Model the behavior you would like to see in your child. Be comfortable with your child’s hearing loss. Don’t hide it, cover it up or pretend your child doesn’t have a hearing loss. From the early years, speak of the hearing loss as a matter of fact. When your child asks for pink or blue hearing aids and sparkly molds at a young age, go with it, don’t try to hide it. For your child to see her hearing loss as a difference, rather than a weakness may lead to better confidence and ultimately better advocacy.
Also, regularly acknowledge how you advocate for your own weaknesses. For example, show your child how you write a grocery list all week long so that you don’t forget what you need when you go to the store, or how you use a calendar to organize your busy schedule, or even how you need to ask for help to get something in a store that is out of your reach. Use self-talk to verbalize the problem solving skills that you use during these daily life experiences so that your child can overhear the process. For a child to see that everyone has weaknesses that require adaptations, can be very powerful.
Have Your Child “Own” the Hearing Loss Make sure child understands his hearing loss. It is critical that your child understand how it impacts listening in different situations. Role play a variety of everyday situations and actions that can be taken. But most importantly make sure your child understands that his hearing loss is part of him, but that it does not define who he is or who he can become.
Maximize the Positives Find your child’s strengths and then provide many opportunities for success. Remember the old adage “success breeds success”. If your child is a strong athlete, has strong mathematic skills or is a good cook, praise her for these talents. Be sure to focus on the strengths by not comparing them with the negatives of hearing loss.
Encourage Extra Curricular Activities Once you have found your child’s interests, have him join in social groups related to these interests. Having common interests can help with forming bonds and friendships which will ultimately foster self-confidence. Encourage your child to join the basketball team, the art club, the swim team, the math team, the chorus, the cheerleading squad, etc..
Promote Independence Make your child’s independence with her devices part of the daily routine from a very early age. The child that learns to put on her devices, change the batteries, know when something isn’t working correctly and troubleshoot issues with equipment is more likely to see the technology in a positive light.
Explore Technology Continuously explore technological advances. Since technology is ever-changing, it important to regularly investigate new devices. Your child may be more accepting of an alternate technology, which might lead to increased usage.
Role Play Teach your child to answer questions from peers about hearing loss and technology. The child who is prepared for these conversations is least likely to be discouraged by them. Help your child to anticipate what types of questions might be asked and what comments he might hear. Then role play these situations using a variety of appropriate responses.
Expose Your Child to Famous Role Models With Hearing Loss There are many adult role models out there with hearing loss spanning differing interests, including sports, television and film, music, and politics. Expose your children to these role models. Athletes include Derek Coleman of the Seattle Seahawks, Lance Allred (a one-time Cleveland Cavaliers NBA player), The Silent Warrior (a professional wrestler), Ashley Fiolek (a profoundly deaf motocross racer who uses ASL), and Jim Kyte (a past NHL Hockey player). In television and film, role models include Marlee Matlin (Deaf actress who uses ASL), Rob Lowe (actor with unilateral hearing loss) Jane Lynch (from Glee who has unilateral hearing loss), Lou Ferrigno (actor with hearing loss who played “The Hulk”), Heather Whitestone McCallum (Miss America), Nina Poersch (recent Survivor contestant with cochlear implants) and Sean Berdy (Deaf actor from “Switched at Birth”). In the field of music, there is Beethoven, Brian Wilson (from the Beach Boys), Pete Townsend, and Phil Collins. In politics, there is Rush Limbaugh (who has bilateral cochlear implants) and Steven Colbert.
In addition to these, Marvel Comics, in conjunction with the Children’s Hearing Institute in NYC, has developed a comic book with the superheroes Blue Ear (with hearing aids) and Sapheara (with cochlear implants) to inspire children with hearing loss.