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!

 Additional Links
More links here:

SaveSave

SaveSave

SaveSave

SaveSave

Please follow and like us:

Parenting Deaf and Hard of Hearing Kids: Choosing a Language (Part I)

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. Last time we spoke about deaf kids was here: Diagnosis, Keeping Devices on Kids, Sports and Activities.

Over nine out of ten deaf and hard of hearing kids are born into hearing families with almost no connections to other deaf or hard of hearing people. Their parents have to quickly grasp the ins and outs of their child’s specific form of hearing loss while making decisions about how to communicate with their little one. Our aim here is to introduce you to different options, without claiming to have a blanket solution for all families.

Back to Basics: Communication vs. Language

If you’re a parent, you probably measure your child’s development against standard milestones. Communication and language skills are often a focal point: they help us understand our child and be understood by him. On a very practical level, it’s such a relief to go from guessing why he’s frustrated or ecstatic, to handing him the glass of water he’s asking for and sharing his joys.

Of course, parents of deaf and hard of hearing kids face the same practical need. But there’s also additional urgency for them. While parents of hearing kids know their child is constantly picking up language (even though they aren’t showing yet), parents of deaf and hard of hearing kids don’t know exactly what their child may or may not be picking up. “Kids are hardwired to learn a language, be it oral or visual,” says Joyce Lew, a speech-language therapist and certified auditory-verbal therapist, “but they need to be exposed to one.”

Babies only have a few years to gain solid understanding of language.

If deaf and hard of hearing kids aren’t exposed to an accessible language, they are at risk for language deprivation. In short, their brains aren’t learning what language is. They must acquire strong foundations in a first language during the critical early years. Those who don’t will have difficulty learning any language in the future, even non-oral languages because their brains haven’t yet formed the necessary connections. “While individual cases vary widely, the younger we see the kids, the more confident we are of the outcome,” says Joyce.  Thus parents have about 4 years to make sure their child is equipped to build a strong foundation in a first language, irrespective of which one they have learnt.

Different Viable Communications Methods

Here’s a brief overview of main communications methods used today.

Auditory-verbal or oral methods focus on using only residual hearing. Therefore children learn how to concentrate on the actual sounds with very little visual help. These methods typically work best for people who can hear across the speech spectrum, using hearing aids and/or cochlear implants.

Auditory-oral or cued speech methods teach children to combine listening with lipreading and visual cues. Cued speech provides additional visual elements for words that look the same on lips. For example, when speaking, hand gestures will specify the first letter of a word, like between “pat” and “bat”.

Manual communications modes include different forms of “sign language”. Many variations exist and some are not considered “languages” in their own right. The easiest way to understand is that Manual English (which includes SEE) is a literal transcription into signs, whereas other sign languages (like ASL for the US, Auslan for Australia, SGSL for Singapore etc) have their own grammar and internal logic.

Girls learning sign language.

Total communication methods allow for the use of all of the above methods in the acquisition of language. The underlying idea is to help kids pick up language with a combination of approaches, which may or may not include sign language, using cues, lipreading and maximising residual hearing.

How to Start Exploring and Choosing

Each case is different. As you explore, you’ll run into advocates of each type of method. Some will focus on making your child’s deafness as invisible as possible, others will want to open doors to Deaf culture and identity. Together they will complement the advice you’re getting from your doctors. How much residual hearing your child has and her prospects of learning sounds are important factors.

You’ll also take into account the community you live in – or want to live in. You need to know you’ll have enough support in your community to go forward with your choice. How much time and resources do you have to invest?  For example, if you are confident you can learn to sign and that your child will have a community of Deaf people to interact with, this will impact your choice.

We’ll be exploring experience from three interviewee’s in part II. Check it out here.

Additional Links

Looking for some of our sources? We used some of these links. Send us more by commenting below!

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.

SaveSave

SaveSave

SaveSaveSaveSave

SaveSave

SaveSave

Please follow and like us:

Preparing Heidi for Kindie Part II (If all else fails)

So in the last post Heidi’s mom gave some tips about getting your kid and yourself, as a parent, ready for kindergarten. And as much as we can plan and preempt, as Murphy would have it, things do not always go as planned. Sh*t happens! As expected, well not really as Heidi’s mom thought she had everything sorted out.

So what happened? Even though kindie was somewhat briefed about Heidi’s hearing condition and how to manage her devices, somehow a curveball got thrown their way and they messed up. Mommy had to rush off one morning for a meeting and Heidi had to choose that morning to throw a tantrum and grandma had to rush off for work. The same day, there was water play and Heidi needed her Aqua+ solution. Mommy briefed one of the teacher how to put it on and had to rush off. On hindsight, the teacher did look bit uncomfortable being tasked with this responsibility but didn’t protest verbally in any way.

That afternoon, one of the teachers called and said the device was blinking orange light. For those who do not know how a cochlear implant works, if the processor blinks green, it means they are working right and connected to the implant. If it blinks orange, it means something is wrong with the connection. Either the left and right side are switched, the battery is low or the connection is damaged. Mommy did a FaceTime with the teacher and still they couldn’t seem to troubleshoot. So she Uber-ed down right away only to find out that the teachers have damaged her processors. They plugged in the coil the wrong way! Both processors!

She called Heidi’s therapist right away and her lovely therapist immediately set up and audiology appointment for her. Lucky for them, there were spare new processors on hand and Heidi’s was under warranty. The alternate scenario would have been pretty distressing: forking out  $20k for both processors and potentially of a few days of bad signing and no hearing for Heidi. A slight problem was that they did not have Heidi’s latest CI mapping program on hand and had to use the old program which was not as updated and compatible for her hearing.

Lessons learnt if you are travelling to a new place or starting kindergarten:

  1. Always have your child’s CI audiology mapping ready in your email so that you can share it with the local audiologist.
  2. Have a contact of the therapist or audiologist or the agent dealing with the device and reach out to them as early as you can so that they are familiar with your child and are able to help them right away if any problem crops up.
  3. If there isn’t warranty for the device, make sure insurance covers most scenarios. Find out what the claims process is like to avoid any unnecessary delays.
  4. With regards to new teachers dealing with the devices, do not assume what seems obvious to you would be to them. Encourage them to ask questions and look out for non-verbal cues of the care-giver. If they do not seem comfortable, address their discomfort right away. Do not take any chances. We do not want our child to ‘lose’ their hearing due to mishandling from caregivers.

With that said, it wasn’t entirely the kindie’s fault. Many local kindies in Singapore are not organised in a way that ensures there are trained personnels to care for kids who need additional attention unlike the ones in Norway. Let’s hope to slowly change the preschool care with every unique child that comes their way. Hopefully, raising more awareness and bringing about a systemic change to the status quo.

Here is a checklist from Understood to prepare for

preschool:https://www.understood.org/en/school-learning/choosing-starting-school/finding-right-school/checklist-what-to-look-for-on-a-preschool-visit

Team Irisada

Please follow and like us: