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. What’s a parent to do?
In therapy, the parent who attends the majority of the sessions, often (but not always!) the mother, can become the “Chief Information Officer” for the rest of the family. During this highly emotional time, she is tasked with explaining the hearing loss, hearing devices, and therapy techniques to the rest of the family — sometimes before she even feels confident that she understands them herself! As the months pass by and she spends more and more time in therapy, she starts to become an expert in listening and spoken language therapy techniques and it can feel as if the rest of the family lags behind.
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 health, whole parent is the greatest gift you can give to your child. Seek out sources of support, whether it’s a professional counselor, an exercise class, taking time for a hobby, or just a good friend with a listening ear. 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.
Once you’ve taken care of yourself, how can you more effectively help the rest of your family get on board?
Pass the buck. Your Auditory-Verbal Therapist has specific training in parent coaching and adult learning and is often more than happy to 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 thier relatives with hearing loss, but they can also have boundless amounts of outdated, ill-conceived advice. Grandparents are often prime suspects in this arena. 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. In therapy sessions, I always say, “The more, the merrier! The more people who can be on Team [Baby], the better!” 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 the expert any questions they might have about hearing loss. Having extended family at therapy sessions can make the auditory-verbal process less of a mystery and help family members learn ways that they can help your child reach his goals.
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 watching from the sidelines, totally out of the loop. You can avoid having to explain things five different times or deal with family members who have missed or mis-heard information second-hand by creating a “communication plan” that works for you. Different families have different ways of staying connected, but successful families all have one thing in common: everyone is on the same page. 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 extended 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. The ability to listen and talk will help your child connect to her family and to the world. Use technology like Skype, FaceTime, or even a simple phone call to help your child practice important communication skills and stay connected to family members who live far away. Distant family members 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. The more your extended family feels a part of your child’s life, the better they will be able to understand and help you cope with the hearing loss.
Give specific tasks. After a while spent attending therapy, most AV parents learn to make a lesson out of any everyday experience. Extended family members who have less practice may not be as skilled, and this could cause them to shut down or 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). While you can do your best to educate them, it’s ambitious to assume that every single family member will achieve your level of understanding of auditory-verbal technique. Instead, pick one specific thing that you can ask of each family member that will capitalize on their strengths while slowly shaping their behaviors into those that will be better for your child. (Sneaky, huh?) For example, Grandpa might not understand all of the theory behind the Learning to Listen Sounds, but if he could play with your child and talk about the animals in the barn once a day, that would be great! A dad who works long shifts and isn’t home much might not have the energy to do a formal “lesson” at the end of the day, but he can commit to reading his child one book each night. The vast majority of family members want to help, they just don’t know how. Give clear, simple, one-task directions and help them become part of the team.
Highlight strengths. For the unexperienced, communication = perfect speech. From attending therapy, you know that listening comes first and that there are many, many small steps in communication development that come before the first word or the first pefect 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 in the way that you have learned to by pointing out specific things to them (See how he turned when the door slammed? Can you hear how much clearer she says your name now? Last week, he was able to answer 8/10 questions about a story his therapist read!)
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 amatuers 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 her efforts will fall on deaf ears. 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. Help family members realize their own strengths. Does Grandpa have a loud singing voice that could help your child learn familar songs? Does Aunt Jane love to cook and could teach your child some new food words? Do the older cousins have great vocabulary that will help your child learn incidentally while they play? Remember, we are all motivated to do things more often when we’re complimented on them!
Just as individual family members have strengths, take time to recognize your family’s strengths as a whole, outside of the realm of hearing loss. Are you close-knit? Do you have family members who can step in to care for siblings while you attend therapy appointments? Does your family deal with challenges with a great sense of humor? Are you a resilient group? While your extended family may not be perfect in all the ways you’d like them to be as you deal with this new challenge, realize that everyone has some strengths, and use them to their fullest!
Remember that 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 peoples’ 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 (good ones and bad ones), 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 problems. It’s not fair to your child, and it’s not helping your family function in the best way that it can.
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 suggstions of someone with specific expertise in helping families of children with special needs.
Celebrate! 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!
Like anything of value, helping family members come to terms with hearing loss and how to help your child can be very hard work but have very big results. Remember that just as it took time for you to understand and come to grips with your child’s hearing loss and how best to help her, it will take your extended family time as well. Over the years, if hearing loss can become just another part of the patchwork that makes up your family, you will all come out better and stronger in the end.