Today’s blog is written by my colleague Elizabeth Rosenzweig. Elizabeth Rosenzweig MS CCC-SLP LSLS Cert. AVT is a speech-language pathologist and Certified Auditory Verbal Therapist in private practice. You can find more of her writing at Auditory Verbal Therapy.
Explaining Hearing Loss to Family Members
Parents of children with hearing loss face the challenge of explaining their child’s deafness to extended family members all year long, but the holiday season, with its endless get-togethers and celebrations, often brings these conflicts to a head. Even the most well-meaning family members can cause stress when they ask questions like, “Isn’t he talking yet?” “Does he still need those hearing aids?” “Didn’t the cochlear implant fix all of this?” or make other uninformed comments. The parent becomes the Chief Information Officer and the rest of the family lags behind. What can you do?
The first task here for the primary caregiver is to deal with the emotions of having to take on this new role. Not only have you become the parent of a child with hearing loss, but you have also become the hearing loss expert to your spouse, extended family, and social circle. It’s a lot to take on at once! Remember to take time out from your newly-packed schedule of therapy and appointments to enjoy your baby and to just reconnect with yourself. Remember that a happy mother is a happy baby, and that a healthy, whole parent is the greatest gift you can give to your child. It’s easier said than done, but crucial for your ability to keep up the energy to be your child’s primary teacher in the long run.
Pass the Buck
Once you’ve taken care of yourself, how can you more effectively help the rest of your family get on board? Your Auditory-Verbal Therapist has specific training in parent coaching and adult learning and can help you educate the members of your extended family. If extended family members have questions that you can’t answer, or won’t accept your answer as a fact, refer them to your therapist. Sometimes, people have to hear information or therapy suggestions from a “professional” before they will take it seriously.
Set the Record Straight
Family members can have boundless love for their relatives, but they can also have boundless amounts of outdated, ill-conceived advice. Though it may be tough, understand that this obnoxious and out-of-date advice often comes from a place of true concern. Remember that you are becoming an expert on hearing loss, but the general public still holds a lot of misconceptions about what it means to be deaf in the 21st Century. Saying things like, “You know, people did used to believe that, but our therapist told us that the latest research shows…” is gentle way to steer people to your school of thought.
Listen to the Feeling, Not the Phrasing
Just as parents of a child with hearing loss experience an ever-changing range of emotions about the diagnosis, so do all of the people in that child’s orbit. An aunt who asks why your child isn’t doing X yet may just want to know about his progress and have no better way to phrase it. The cousin who offers unsolicited advice may be grasping at straws for a way to help. It’s a sensitive time, but try to give people the benefit of the doubt. Most aren’t intentionally being malicious.
Invite People in
Ask your therapist about bringing extended family members to sessions (especially this time of year, when extended family may be in town). This can give relatives a chance to see therapy first-hand and to ask any questions they might have. This can make the auditory-verbal process less of a mystery and help family members learn ways that they can help your child.
Have a Communication Plan
Finding out that your child has hearing loss introduces you to a whole new world of information. As you’re trying to dig yourself out of the mountain of paperwork, blogs, websites, and pamphlets, extended family members can feel as if they’re totally out of the loop. You can avoid having to explain things five different times or deal with family members who have missed or misheard information second-hand by creating a “communication plan” that works for you. Whether that means asking your therapist to tape sessions so all family members can see them, starting a blog, posting to Facebook, or sending out a weekly email about your child’s latest accomplishments and goals, the more your family knows, the more helpful they can be to you.
Help Your Child Stay Connected
One of the main reasons that families choose a listening and spoken language communication approach is so their child will have equal opportunity to be a part of the language and culture of their family. Use videoconference technology or even a simple phone call to help your child practice important communication skills and stay connected to family members who live far away. Relatives can create experience books for your child, write letters, or send emails that can serve the dual purpose of working on language skills and strengthening family bonds.
Give Specific Tasks
After a while spent attending therapy, most AV parents learn to make a lesson out of any experience. Extended family members may have less practice and feel like they have nothing to offer. Or, they may plough ahead interacting with your baby in whatever way they think is right, even if it’s totally counter to what you’re trying to do in therapy (for example, family members who insist on using visual cues, keep the radio blaring in the background as a new listener tries to adjust, or insist on making every interaction a “test” of your child’s abilities). Pick one specific thing that you can ask of each family member. Grandpa might not understand all of the theory behind the Learning to Listen Sounds, but he could play with your child and talk about the animals in his barn. A dad who works long shifts can commit to reading his child a bedtime story. Most family members want to help, they just need to know how.
For the inexperienced, communication = perfect speech. From attending therapy, you know that listening comes first and that there are many small steps in communication development that come before the first word or the first perfect sentence. Extended family members may only see what your child isn’t doing compared to his hearing peers, not the many gains he’s made over the past few weeks or months. Help them to see your child’s abilities by pointing out specific achievements (See how he turned when the door slammed? Can you hear how much clearer she says your name now?).
In addition, family members may feel that you have become the expert and know everything to do to help your child succeed, but they are amateurs and have no idea where to begin to help. This can lead to a real sense of role-loss. The grandmother who dreamt of reading books to her grandbaby suddenly feels like that won’t be possible. The uncle who wanted to share his love playing guitar wonders if bringing up the topic of music will hurt the parents’ feelings. Let them know that they’re probably already doing many things that can benefit your child and help them realize their strengths. Does Grandpa have a loud singing voice that could help your child learn familiar songs? Does Aunt Jane love to cook and could teach your child some new food words? Remember, we are all motivated to do things more often when we’re complimented on them!
A crisis doesn’t create family dynamics, it just exposes them. Times of “crisis,” like learning that your child has a hearing loss, bring out people’s true colors. While it’s tempting to assume that it’s “The Hearing Loss” that caused you to have tension with your spouse or feel resentful toward your in-laws, that’s placing the blame on the wrong source. Trying times show us who we really are, and they can often unearth family dynamics that we didn’t know we had. Don’t make your child’s hearing loss the “bad guy” or the scapegoat for all of your family issues.
Don’t be Afraid to Bring in Reinforcements
Your Auditory Verbal Therapist can be a great source of information and support, both for you and for your extended family. But if you find that family counseling is taking over the majority of your child’s sessions or that your needs are extending beyond your child’s weekly appointments, it may be time to bring in a social worker, therapist, or psychologist with training in family therapy to help you sort things out. Remember: you’d go to a computer expert for help with your laptop, so why not go to a family expert to help strengthen the most precious gift you have? Your AVT may even have suggestions of someone with specific expertise in helping families of children with special needs.
Families can be our toughest critics, but also our greatest champions… and most grandparents don’t mind a good brag! You and your child are working hard. Share your successes with a team just waiting to pat you on the back. Your child deserves it!