7 Things Not to Say to a Parent with Deaf or Hard of Hearing Children

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. The next few months we’ll be focusing on parents of deaf and hard of hearing kids. Previous articles include: diagnosis, choosing a language to communicate in (part I and part II), whether or not to choose CIs for your kid, keeping devices on kids, sports and activities.

It can happen to anyone. Your cousin just found out her son is deaf, or you meet a dad outside school whose daughter wears hearing aids, and you say something awkward. You didn’t mean to, but you did. There’s that short silence while you try and figure out what went wrong. It’s okay, here are some tips for next time you talk about their child. You’ll see, it’s quite simple!
1 – “So is he deaf and dumb?”

Okay, now this one can go both ways. Maybe you meant he is mute, as in if he can’t hear then he can’t talk either. Being deaf does not mean being unable to speak and communicate.  Many deaf and hard of hearing people speak several languages. Some of those languages might be signed languages, others oral languages you can hear. It all depends on their families and personal choices. There are several ways of giving these children access to language.

Young Thomas Edison

And in case you were referring to “dumb”, the colloquial term for “stupid”, you’ll find that deaf and hard of hearing people have exactly the same IQ averages as others. One even invented electric light, motion picture and sound recording, so you have a lot to thank American deaf inventor Thomas Edison for.

So what should you say? Nothing regarding IQ. Possibly ask: “What’s the best way to communicate with him?”

2 – “So this hearing thing?” or ” what’s this headphone?”

Right, back to basics: what you (sometimes) see behind a deaf or hard of hearing person’s ear is typically called a hearing aid. Note that elaborate ones can be a CI (cochlear implant) or bone conduction hearing devices and that some deaf and hard of hearing people get by just fine without aids, either by using residual hearing or by simply not hearing.

Where you’re not completely wrong is that some of these devices can act as headphones. For example, many CIs/ HAs can pick up calls directly, which means some deaf and hard of hearing people can hear phone conversation directly in their ears. I know, cool, right?

So what should you say?  If you really are into tech: “What kind of device is this and how does it work?”
3 – “Don’t worry, your next kid will be fine, I had a friend who’s neighbour’s friend’s aunt’s daughter…”

Hem hem hem! Our child is not broken, neither is she less than a hearing child. She just occasionally requires some additional help and accommodation. For example, she might be cranky or tired in noisy places or she might sometimes not reply, not because she is rude, but she might not have heard you. That’s alright. Sometimes our hearing kids don’t either.

So what should you say? Hmmm, anything, literally anything else! The above is pretty epically insulting.

4 – “So he can hear normally now?”

Define normal because as a hearing person, I don’t know what you actually hear and vice versa. We all know of a friend with “normal” hearing who can’t sing to save her life, yet Mandy Harvey here, she sings beautifully despite being deaf. And remember, Beethoven? Many of his most admired works come from the last 15 years of his life, as he progressively lost all hearing.

America’s Got Talent Deaf Contestant, Mandy Harvey sang the world to silence (Photo by: Vivian Zink/NBC)

Another important point: everyone is different. So some deaf or hard of hearing people can hear even very minute sounds with their CIs while others don’t. It really depends. And some people will turn their devices off sometimes, or not wear them.

So what should you say? If you are a well-intentioned friend, family member or teacher who wants to know how to make sure the child understands you, try this: “What should I do to make sure Daniel understands clearly what I’m trying to say?  Does he needs a sign interpreter or do I just speak as usual?”
5 – “Does your child need special help?”

Technically this is not a bad question but some parents do get offended as sometimes the word ‘special’ might lead them to think that you think there is something wrong with the child, and parents being parents, they might get snappy on this subject.

So what should you say? If you need to understand the child’s current or future needs, as their teacher or helper, try this: “What tools or skillsets do the teachers need to ensure your child’s potential is maximised?”
6 – “So will she need this thing after she grows up?”

Again, the “thing” as we have said earlier is a hearing aid and unless she’s a bird and can regenerate her hearing (yes birds do that, scientists are quite excited about this), she will need her hearing aid forever. Really, forever? Yes forever, and it’s actually a pretty cool fashion accessory (or should become one) and you know what? She can take it off and go into her own quiet space. But now we’re digressing…

So what should you say? Do you really need this a piece of information? How about trying “When is a good age to teach her how to care for her devices?”

7 – “So did something go wrong during the pregnancy or was it after birth?”

Woah. Seriously? Think before you speak. It is virtually impossible these parents damaged their child’s ear(s) themselves (unless you saw them with the newborn at a hardcore rock concert standing by the speakers and pouring a deadly potion into the baby’s ears).

You’d never tell someone their child was short-sighted because of something they did! And before you ask: sometimes there’s no point in understanding exactly why a person has different hearing. Assessing what they can and cannot hear is the priority.

So what should you say? Maybe what you meant was: “When did you find out?” I don’t know.

Thanks for reading! Of course, this was meant to be humorous and some of these are a tad over the top. Though you’d be surprised what awkward situations can arise!

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Cochlear Implants on Small Kids: Is This Our Best Option?

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. The next few months we’ll be focusing on parents of deaf and hard of hearing kids. Previous articles include: diagnosis, choosing a language to communicate in (part I and part II), keeping devices on kids, sports and activities.

If you’ve recently found out your child qualifies for a cochlear implant, you’ve probably got a lot on your mind. Parents like you have to make tough decisions for their little ones. The stakes and costs can be high, so we spoke with a doctor and a parent to highlight different aspects of the decision process. Dr Lynne Lim HY from the Lynne Lim Ear Nose Throat & Hearing Centre in Singapore gave us key points from a medical standpoint, and Damien Wee shared his family’s experience with his 4-year-old daughter.

How Do Cochlear Implants Work?

The simplest way to describe cochlear implants (CI) is as a replacement part for a non-functioning ear. In terms of sound processing, there are two parts to a cochlear implant, one external and one internal. The external processor picks up sounds and transforms them into electronic signals which are transmitted to the internal electronic device connected to the cochlear nerve. Thus sound is transmitted to the brain, bypassing many ear pathologies. For a diagram and more, check out this video and article at KidsHealth.

When is the Best Time to Undergo the Operation?

Technically the operation can be done as soon as your child is able to withstand general anaesthesia. “The youngest patient I operated was 6 months old, and the oldest 83 years old,” says Dr Lynne. She sometimes admits waiting until children weigh at least 10 kilogrammes, for medical reasons. But the main time constraint is actually linked to language acquisition.

As mentioned in previous articles, a child’s brain soaks up language from 0-3 years. If children aren’t exposed to an accessible language during that time, they will find picking up any language difficult. The so-called “accessible language” doesn’t have to be speech, it can be signed. But that requires the family and extended social network being fluent enough in sign language for the child to develop diversified and structured language patterns. For a glimpse into what this could mean, read Phoebe Tay’s perspective here (as well as additional links).

Many families can’t commit to signing and want their child access to the hearing world as soon as possible. This was the case for Damien’s family. “We are not familiar with sign language so our initial focus was for our daughter to gain access to sound and be able to communicate using speech,” he says. “As she was born profoundly deaf, she would never have access to sound without the implants,” he explained. In their case, the operation was carried out when their little one was 10 months old.

My Child Isn’t Profoundly Deaf: Is this my Only Option?

This is often the trickiest case, as the operation will usually destroy any residual hearing your child may have (for exceptions, read here). If their residual hearing is good enough, methods might be better suited to developing language. This could entail using hearing aids rather than cochlear implants. To see more, you can revert to these previous articles (part I and part II).

The main difficulty is asserting what your child can really hear. In the words of Dr Lynne, “hearing beeps in a soundproof room with good headphones is much easier than listening in real life situations with competing demands for attention, background noise and poor environmental acoustics. So hearing tests can also underestimate the difficulty a patient has with hearing in the real world.”

Another concern is your child’s ability to communicate what they hear, especially when only a few months old. In Damien’s daughter’s case, they had additional hearing evaluation tests (the Auditory Brainstem Response tests) conducted at two different hospitals. “Doctors put probes into her ear,” he recalls, “and adjusted the volume and frequency of the sounds to evaluate the level of sounds her nerves registered. Both tests showed that the level of sound registered was not enough for her to develop speech with regular hearing aids, hence cochlear implants were the best chance for her to be able to hear.”

Photo credit: gfpeck on Flickr

Last but not least, some types of hearing loss can evolve over time. So it might turn out that your child’s form of hearing loss was mild enough for hearing aids in the beginning but not anymore. Staying watchful during those critical years of language acquisition will ensure you’re able to react fast and adapt.

Are there any Long Term Negatives I Should Know About?

Like all invasive operations, there are risks associated with implanting the devices. Some are related to how the body accepts the implants, to others are linked to the fact that the inner ear is affected over the following days. And parents are sometimes advised to have their child vaccinated against meningitis before the operation, as people with cochlear implants have higher risks of contracting the illness in their lifetime. “Once we had made up our minds, we didn’t think about it too much,” admits Damien. “We concentrated on researching and choosing which cochlear implants would be best.”

Another long-term negative that could affect people with CIs is potentially being unable to benefit from future drugs that might “cure” certain forms of deafness. At this stage, it’s difficult to do more than speculate, but you can read more here.

What’s the Future of CIs?

Dr Lynne says “technology is so advanced, CIs can only get better.” This means smaller, thinner implants and processors, fewer wires, better technology for filtering noise,  and longer battery lifespans. In many cases, accessories for activities like swimming. , are already available. Current innovations are even very high tech and somewhat savvy, like the ability to pick up phone calls. Future CIs may not even need an external component or might be able to deliver medication directly into the ear.

Remember these from a recent post? ListenLid also helps keep CIs dry!

Sometimes parents can be tempted to wait for newer innovations instead of opting for cochlear implants. “It’s difficult to find information on the development of these newer innovations, aside from CIs. Even within the CI industry, the three main producers of Cochlear Implants are competitors, so they aren’t always keen to publicize their development plans and results.” Damien was quite pragmatic: “ We do not know when these newer innovations will be commercially available and how reliable they will be. Cochlear implants have proved to work for many people. We needed to make a decision fast so as not to lose the important first few years of language acquisition for our child.”

What Comes Right After the Operation?

We’ve all seen videos of “wow moments” when a child hears for the first time as their implants are turned on. Each kid’s reaction is different, from wonder to fear at this new sense. We compiled a playlist to give you a glimpse.

It’s important to stress that the implants alone are not enough to fully understand sounds. Following the operation, a lot of hard work goes into training the brain to recognise different types of sound.  “Parents should be aware that all kids have different outcomes,” underlines Dr Lynne, citing other physical factors (like cognitive delay and autonomy of the cochlear nerve), medical history (early or late diagnosis) and psychological aspects, particularly motivation.

Every patient Dr Lynne works with has had their own “wow” moment. There are many highs and lows after the operation, but she’s impressed by the hard work and courage her patients display. Some, like the baby she performed her first simultaneous bilateral cochlear implant on, grow up to become top students in their schools. Meanwhile, Damien remembers how four months after the implants were turned on, his daughter was finally doing really well on the Ling Six Sound test: “I was so moved to see her developing her hearing capabilities.”

Other Takeaways

Damien advises getting more than one medical opinion and also speaking with parents whose children have undergone cochlear implant operations. “Getting another professional evaluation helps verify the hearing test results and makes you more confident with your decision. In addition, talking with parents whose children have cochlear implants will give you a better understanding of the social, emotional aspects of the operation or other hearing options,” he says.

Remember, some of the world’s greatest athletes, like Duck-hee Lee, are born deaf.

At the end of the day, you’re going to be teaching your child to reach their full potential and be confident, so you need to be convinced you are making the best choice possible. His little one now speaks three languages she learned living in a multicultural setting, and thanks to the hard work they have all put in, she’s now thriving in a mainstream kindergarten).

For comments or questions, get in touch!

Disclaimer: these blog posts are intended as exploratory articles for parents of recently diagnosed children. They do not constitute medical advice and cannot replace a medical opinion.

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