“We found out three months ago that our baby is deaf. We are still taking her to follow-up appointments and trying to sort out exactly what she needs. We are also slowly getting over the shock of it all – it was a perfectly normal pregnancy and no one in our family has a hearing loss. But our family and friends are all asking us confusing and difficult questions “She looks so normal and happy, how can she have such a serious disability?” or “She smiles when I talked to her, are you sure that she can’t hear?” We know that they love us and only mean well, but we don’t know how to handle their comments at this topsy-turvy time for us.”
For many parents, having a child with a hearing loss comes as a complete and total shock. Research shows that the overwhelming majority (over 90%) of children with hearing loss are born to parents with normal hearing! When I found out that my son had a hearing loss, I barely knew anyone with children with hearing loss. In my mind, as with many parents, hearing loss brings to mind elderly relatives with poorly fitted and squeaking hearing aids.
Often now, a hearing loss is detected at birth with the hearing screening at the newborn nursery but it takes much longer to find out how severe the hearing loss is (it ranges from mild to profound) and to determine what intervention is appropriate (amplification with hearing aids, candidacy for cochlear implants, speech therapy, and other programs). This time is very challenging for parents and naturally, other family members and friends who care deeply about the baby and parents are confused and concerned along with the parents.
There are a few ways to help everyone get through this rocky period and set the tone for how you would like your family to relate to your child’s hearing loss:
Tell everyone what is going on and tell the truth. Keeping secrets makes people worry that something much worse than a hearing loss is happening and makes everyone anxious and suspicious. Secrets also make it seem like you have something that you ought to hide. You have done nothing wrong and having a child with a hearing loss is nothing to be ashamed of. An example of setting the tone, my son has always had hearing aid earmolds in bold colors (now orange and green mix) and his hearing aids have a cool see-through case so you can see the inside of the mechanism. We have always encouraged him to feel comfortable with his hearing loss and not feel that he needs to hide it or feel badly about it.
Even if you don’t know what the situation really is, its ok to say that and promise to keep family and friends updated as you understand more. You can say “The baby failed the hearing screening at the hospital and we need to take her for more tests to know exactly what that means.” It is okay if it takes time to figure out what is going on, even if it is very stressful for parents. As long as you keep pushing and getting appointments for ABRs and with the audiologist, you will find out what is going on.
Its probably not terribly useful to try to argue with well-meaning relatives who think that the baby can hear. It is certainly possible that the baby has a mild, moderate, or even severe loss and can still hear in some situations. Also, keep in mind, that bright, alert, attentive babies with severe or profound hearing loss smile and respond to people talking and smiling at them. The baby is naturally trying to engage in communication with whatever input is available. If she can’t hear anything, she may still look closely, feel vibrations, and enjoy the show of people gesturing and smiling. You can explain this – that sometimes babies who cannot hear will respond to the other inputs that they see and feel.
Encourage talking and communicating. Show everyone how to talk closely to the baby’s ear for maximum volume for the baby, but not to shout. Sing songs, play hand games like “patty-cake” and feet games like “this little piggie” and explain to all of the family that if it is hard for the baby to hear, she will need more experience and practice listening and communicating.
Include others in this great task: what a wonderful resource for you and your baby extended family and friends can be! Family and friends often wish they could help in some way but don’t know how. Enlist family and friends to come over and take a turn playing and talking with the baby. They can take the baby out for walks and talk about everything that they see going on. They can get used to the idea even if it seems funny at first – talking to a baby who doesn’t answer and may not be able to hear anyway – might seem crazy, but it is really important for the baby’s speech and language development and builds strong relationships with the special people in her life.
Make use of useful websites and professionals when you don’t know the answer to questions. You are at the beginning of your education on hearing loss and likely don’t know how to answer many questions that your family and friends may be wondering. Direct them to websites that can provide background information about hearing loss. If you have met an audiologist or speech therapist who you feel comfortable talking to, you can ask them if they would talk to your family with you or for you, it won’t be the first time that they have done this. You can always send me a message, and I am happy to talk to them and you about what is going on.
If family and friends live far away, it can be difficult to feel connected and stay in touch. This can be hard for families when there is a lot of excitement and stress: a birth in the family and news of hearing loss. Send them pictures and videos of the baby. Encourage them to send recordings of themselves reading baby books or singing songs. You can play these for the baby and use them to introduce these special people to your baby.
Its okay to feel overwhelmed or worried or frightened. This can be a very confusing time – you thought that you were prepared for a baby, which usually turns out to be very exhausting all by itself. You didn’t bargain for a special need like hearing loss. It leaves a lot more homework than you were expecting. Don’t worry if you feel scared about how you will manage and how your baby will be okay. Those are normal reactions. Just love your baby and do your best most of the time. Occasionally, give yourself a break – you are only human and you are going to do fine!
Tags: children, cochlear implant, coping with stress, deaf, diagnosis, family and friends, grandparents, hearing loss, infant, newborn hearing screening, outlook on life, parenting, parents, positive outlook