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Family members can have boundless love for their relatives, but they can also have boundless amounts of outdated, ill-conceived advice. Though it may be tough, understand that this obnoxious and out-of-date advice often comes from a place of true concern.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.

 

Highlight Strengths

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.

 

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!

I had an experience this week that reminded me that too many of us work in silos.

I have had double vision for years due to what we could have called a “wandering eye” if I were a little kid. I have seen lots of very good ophthalmologists to whom I complained about the problem but who had no suggestions. It was a big problem which interfered with lots of activities (like driving on a highway) which require binocular vision. I now understand that they were in their adult silos and just didn’t think about a problem that usually affects little kids. Fortunately for me, a colleague suggested that I see a pediatric ophthalmologist. I did and he said that the problem was easily fixable (easy for him to say) requiring surgery to move my eye muscles. Very scary but having double vision was very annoying and inconvenient. I had the surgery and now, one week later, I no longer have double vision. Why didn’t any of the adult ophthalmologists think about this? Silos!

Often we think a lot about what we know well. I think I know a lot about hearing loss in children and feel confident recommending who needs a hearing aid or a cochlear implant. No doubt there are things I don’t know. It is my job to try and keep up to date. When I ran the clinic at Beth Israel/New York Eye and Ear Infirmary, we were always surprised that families seeking cochlear implants were, for the most part, self referred. Virtually every adult for whom we recommended a cochlear implant had been told by their hearing health provider (audiologist, ENT, HA dispenser) that their hearing loss was not severe enough for a cochlear implant. Some of my colleagues thought that these colleagues didn’t want to refer patients for CI’s because it would mean that they would loose the patient. I didn’t and still do not agree. I think that they did not know who was a candidate for CI. The criteria for candidacy changes so quickly that unless you are working in the cochlear implant area you likely are not current. In addition, the benefit that is possible to receive from a cochlear implant has also improved astronomically. If you do not have contact with children and adults who have received cochlear implants you just will not know what is possible in 2017.

 

How do we prevent getting stuck in silos?

 

We have an obligation to our patients to assure we do not to get stuck in silos. What can we do to be sure that we don’t? I think there are two categories of things we need to do. Obviously we need to keep current. If we are dispensing hearing aids we need to know as much as possible about new hearing aids. If we only dispense one or two brands, and keep current on those, we may miss innovations that other brands are able to provide. Yes, the ones you dispense will likely catch up but it may be awhile.

Anyone who sees patients with more than a moderately severe hearing loss has an obligation to understand about cochlear implants. Attend sessions about cochlear implants and bone anchored implants when you attend a conference. Ask colleagues who work in a local CI center if you can come visit and observe. If you have families that have chosen a cochlear implant ask them to come back and help you learn about implants. They will love it.

If you work at a CI center be sure that you keep yourself informed about what is possible in hearing aids. If cochlear implants are improving so are hearing aids and that my change options for your patients.

When I go to a conference I make an attempt to attend at least one presentation that is out of my comfort range. I believe that it expands my brain since I certainly have to listen more carefully, and it gives me new information that I might apply. I am not likely to attend a talk on stuttering but I might attend a talk on vestibular rehabilitation. I am not going to do vestibular rehab but it will help me recognize vestibular issues in my patients.

 

Technology is not enough – and fitting technology alone does not an audiologist make!

 

The fact that we are audiologists doesn’t mean that we only pay attention to the technology. We need to understand social, emotional and educational issues that effect our patients. Pediatric audiologists need to recognize if a child is not developing good speech and language, academic, or literacy skills and make appropriate referrals. We need to discuss social skills and encourage families to seek assistance if social skills are an issue. We need to help both children and parents get support from other families. For adults, we will have more satisfied patients if we can arrange for auditory training and group support to help adults adjust better to hearing aids and hearing loss. Adult partners and children of adults with hearing loss will also benefit from understand more about hearing loss and getting support.

Please don’t say you don’t have the time. Research shows that more time on the non-technical issues results in more patients being satisfied with their technology and reduced need for follow-up visits as well as improving communication outcomes. We need to make the time. I know it’s complicated but audiology better be more than just fitting hearing aids.

 

 

*featured image courtesy Capitol Communicator