Deafness

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

/ Mélie Aboul-Nasr / Leave a comment

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?

/ Mélie Aboul-Nasr / Leave a comment

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

/ Mélie Aboul-Nasr / 2 Comments

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

Part I focussed on the importance of early language acquisition and briefly reviewed different methods. This article will draw on the experience of three people with different perspectives, to give you more informal insight.

We were very lucky to have input from three experts and parents. Phoebe Tay is a Deaf teacher from Singapore. She speaks of her journey growing up oral in a predominantly hearing society to discovering the Deaf community, where she learned about Deaf culture and Deaf identity. Toshiko Clausen-Yan shares experience as a hearing mother to a multilingual oral son. We also spoke to Joyce Lew, a speech-language therapist and certified auditory-verbal therapist who migrated from teaching using the auditory-oral method to concentrating on auditory-verbal.

A Speech-Language and Auditory-Verbal Therapist on Oral Methods: Joyce Lew’s Experience

Joyce started her career in Singapore at a time when screening tests were rarer, and kids came into her office quite late. “They had already learned how to get by with lip-reading and mostly came from hearing families”, she recalls. Their families didn’t really have the time to learn a whole new language (like signing) to be able to stimulate them soon enough. “Parents were really just desperate to connect with their kids. They wanted activities to do that would teach their kids language, now.”

Joyce initially focussed on auditory-oral methods. “But research [at the time] suggested that if we continued teaching kids language through lip-reading, they would likely plateau in language acquisition because we read and spell based on how words sound.” So she decided to test auditory-verbal methods in her work.

At first, it was difficult for children to accept to learn relying only on their residual hearing. “It felt extremely unnatural at first,” she says “we had to think of all kinds of ideas to bring the focus away from the lips. But within a few months, there were moments of automatic listening and verbal responding while the kids were busy with their heads down in play.”

In some cases, residual hearing can be used to access language.

A few years later, as newborn screening became mainstream and more and more hard of hearing babies arrived with hearing devices, auditory-verbal became a norm. She says “some of the reasons are associated with the relative ease that babies experience in getting used to hearing devices and in learning how to listen without first learning how to lip-read.”

After a decade in her field, Joyce is convinced communication is key to developing language. And that parents tend to communicate more with their child if they are comfortable with the chosen language.

From Oral to Signing and Deaf Culture: Phoebe Tay’s Journey

 

Phoebe’s life changed when she started to use both English and Auslan

Phoebe was born deaf and diagnosed around three and half years old. At the time in Singapore, oral methods seemed to be the only option. Moreover, spoken and written English were expected to be understood by everyone. With the use of hearing aids and residual hearing, Phoebe was able to pick up English. She fared well enough in school and her language skills “started to bloom from upper primary onwards.”

 

Yet communicating wasn’t always easy. “It was okay to communicate in one to one setting”, she says “but classroom and group settings were tough.” Phoebe points out that language development is not just linked to academia, but also to social development. She felt like she couldn’t quite fit into the hearing world. Almost like language was a barrier.

Then she went to Australia, where she learned Australian Sign Language (Auslan). She suddenly discovered a language she could acquire, as well as a whole new culture. “I started to feel more confident, and signing helped me get a better sense of self-esteem.” Realising that she could use both Auslan and English changed her life.

There’s growing evidence that being part of a Deaf community and developing a Deaf identity helps build a child’s resilience. For Phoebe, this effect was palpable even as an adult. “I use aids, but they have their limitations. And they don’t make me a hearing person.” At the end of the day, “some kids will fail at oral methods no matter how hard they try because they simply can’t hear enough”. They still deserve to have a language they can succeed in naturally.

When Cochlear Implants Are Combined with Auditory-Verbal Therapy: A Mother’s Modern Tale

Toshiko’s second son was born profoundly deaf. Her family chose to give him the most mainstream life possible. This was possible according to doctors, who recommended cochlear implants at a very early age: only seven months old! Despite their natural fears regarding invasive surgery and the high cost, they chose this option.

Of course, this meant many years of intense speech therapy. “As soon as he had his cochlear implant, he got the same exposure to language as a hearing child,” she says. Sometimes it can be hard to get children that young to focus on tasks (like speech therapy) and keeping their devices in place, “but you have to keep in mind the long-term goals.”  Over time, her son has been able to learn several languages, including English, Mandarin, Japanese and Norwegian in natural settings.

Implants are getting more and more sophisticated and invisible.

For Toshiko’s son, the implants worked so well he can hear very minute sounds. “The advancement of technology has made this possible and we embrace all advancement that makes life simpler and better,” she says. In fact, he can now pick up calls directly to his implants, which he thinks is pretty neat.

She has a few words of encouragement to parents of children born deaf: surround yourself with people who are supportive and positive. “I did not allow people to cry or feel sad for him in front of him,” she remarks. “Stay positive, and keep your child feeling positive.”

As a brief conclusion

We hope these three testimonials will help you with parenting your child. Remember: each family is different. We hope yours will thrive!

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.

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

/ Mélie Aboul-Nasr / Leave a comment

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.

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New Year, Same Promise, Exciting Developments

/ Mélie Aboul-Nasr / Leave a comment

The old year is closing, the new one is coming. We thought now would be the right time to reflect on 2017 and give you a taste of what is yet to come. As you know, our goal is to become the go-to platform for families in search of solutions adapted to their developmental differences. We’ll continue to pursue this goal.

happy-new-year

Photo credit: Aaron Burden

2017: Developing Community and Awareness

Those of you who’ve followed us from the beginning know Irisada is still young. As the online platform grew, we also wanted to get to know our community better. So just under two years ago, we opened a Facebook page.  This year we worked on strengthening our community of followers and pursuing socially responsible goals.

We held several fun giveaways, including Hua Hee card games to help fight against dementia and Senseez Pillows for kids with sensory needs. We also held a fundraiser to give back to the community when we launched T-Jacket (a vest that helps autistic children relax by simulating a hug) on Irisada.

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Part of our aim is also to build awareness around a wide range of conditions and explore the kinds of products and anecdotal tips that help families live fuller lives. Over the past six months, we focused on different conditions, striving to share tips from other parents in similar situations. Here’s a quick recap in case you’ve missed some of them:

2018: Same Promise, Exciting Developments

With already more than 300 products available for a range of conditions and abilities, we’ll be continuing to find the best solutions for your families. We’ll expand product ranges and cater to new conditions, including those linked to mobility and the elderly, to give you more choice.

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As for our community, we’ll be actively discussing specific points in our specialised Facebook groups. One such group is already running (The Discussion Group for Solutions and Tools for Special Needs), feel free to join, and we welcome suggestions for groups you’d like to see set up.

In terms of blog articles, we’ll be delving deeper into some of the conditions already mentioned, reach out to us if you have specific topic suggestions.

We look forward to the coming year with you. Keep following us on Facebook and Instagram. Get in touch with comments and suggestions. And of course, send us product ideas or reviews. You are the reason Irisada exists, you’re part of our story!

Last but not least: Happy New Year and thanks for following our adventures!

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Turning Hospital Fears into Positive Experiences

/ Mélie Aboul-Nasr / Leave a comment

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ll be looking at what parents, specialists and people with diabetes have to say about living with the condition.

We’d initially planned to cover the difficulties faced by diabetic children learning how to use needles on a daily basis. But kids with many conditions face a common fear of medical setting. So we spoke to Esther Wang, an entrepreneur and inventor, whose innovative approach to children’s health education is having an impact in hospitals around the world.

Explain Away the Fear

Esther Wang wanted to design a product that would answer this specific need expressed by hospitals in Singapore: when kids are brought into hospitals, they are usually scared. She started by immersing herself in hospitals and watching kids interact there.

Her first conclusion what that most of the fear stemmed from a lack of understanding of medical procedures. Children needed more than words and explanations, they needed an experiential approach. She started testing ways children could learn and understand the purpose of their visits. The challenge was to turn healthcare moments into experiential learning.

There was also another issue at hand: when children don’t understand medical procedures, they can feel hostility towards medical staff, or betrayed by their parents.  This needed to change. “Family ties should grow stronger through these experiences,” says Esther, not weaker. Similarly, it’s easier for medical practitioners to work with kids who understand they are all on the same team. They too, need to have a positive relationship with the child, albeit a very different bond.

Rabbit Ray pack

That’s how Rabbit Ray was conceived. Rabbit Ray is more than a blue plastic toy with health-related gadgets: it’s an invitation to play and learn. There’s a whole process of using Rabbit Ray that allows children to go from being passive and scared to willing and active participants in their care. And it’s simple.

How Rabbit Ray Works

Rabbit Ray is a cross between a doll and role play. Essentially, it is a doll: kids immediately reach out to play with the cool looking Rabbit. The sleek bunny opens up to reveal medical instruments which can be used on Ray to explain major medical acts. Vaccination, blood sampling, intravenous drips and more can be experimented directly on Ray. So he is a medical doll which doctors and nurses can use to explain what will happen to the child. They learn by watching medical acts performed on Ray.

The great power of dolls is that they can be used to role play. “When children are put into the position of injecting Rabbit Ray, they get to play the star and the medical person,” says Esther. This can lead to vital interactions. “Telling the child that Rabbit Ray is scared – like he might be -, helps the child empathise with the nurse or doctor.” So that when the child gets the same medical act performed on himself, he will find it easier to cooperate. Cooperating will feel like being part of a team, rather than passively subjecting to a scary event.

Kids playing with Rabbit Ray

Kids playing with Rabbit Ray

Last but not least, Rabbit Ray was designed for a variety of clinical scenarios – from emergency with a high volume of patients, to the quiet moments during a patient’s hospitalization. Explanations can be given in just one minute or turned into a 30-minute game. Moreover, Rabbit Ray is certified according to Europe Safety Standards and strict clinical infection control standards. Ray is easy to wipe down in record time, which helps for fast transitions.

Real Situations Rabbit Ray has Saved the Day

As we’d initially wanted to focus on diabetic kids who need to learn how to perform medical procedures on themselves, Esther talked us through the specifics. “The needle is very realistic, but it’s made out of a tiny straw“, she explained. “This means they can use it as a practice needle on themselves, as they learn to get comfortable.” In essence, children can practice how and where to inject themselves insulin, without the actual scary needle. “Touching the fake needle conveys a lot that words cannot.”

Rabbit Ray is also great for special needs kids. A special needs school in Singapore used Rabbit Ray to explain the upcoming vaccination campaign, and they were thrilled with the results. The children – juniors – were relaxed and happy, many of them even hugged the doll after the shots, and the headmistress intends to use Rabbit Ray all year long to explain health-related subjects. Generally speaking, Rabbit Ray’s multisensory approach could help children affected by conditions ranging from autism to sight loss.

Happy Nurses with their Rabbit Rays

Most often, Rabbit Ray is used 45 hospitals in 11 countries, mostly with children fighting cancer. The bunny is fun and uncomplicated. It helps ensure kids in hospitals stay just that: kids.

Esther Wang and the Joytingle team are recognised globally as the Global Winner of the Shell LiveWIRE Top Ten Innovators Award (2015). Now she hopes she will be able to bring this resolutely humane innovation to more kids all over the world.

Additional Links

Looking for some of our sources? Check them out. And send us more by commenting below: 

  • Rabbit Ray is available on Irisada, here.
  • Rabbit Ray on the web: here 
  • A short TV report by News Channel 7 WJHG.com.
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How to Keep Hearing Devices on Kids

/ Mélie Aboul-Nasr / Leave a comment

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ll be looking at what parents and specialists have to say on raising children who are deaf or are hard-of-hearing. The previous articles in this series can be found here (on diagnosis) and here (on playing sports).

Finding Helpful Solutions to Keep those Devices on Kids

Today’s area of focus is the logistics around hearing devices. Some of the ideas and products listed below are available on our platform, all have been tried and tested in the community. Reach out and comment if you have more to add.

Solution 1 – Babies: Scarves and Headbands

The first difficulty parents of kids with hearing devices run into, is the size and bulkiness of the aids compared with their bambino‘s head. For very young babies, this can be an issue during breastfeeding especially. As hearing aids can make very loud noises when they are shifted, some parents decide to avoid any discomfort for their child and remove the aids completely at feeding times. Another option can be to use baby sized scarves on their heads to prevent rubbing against the devices, such as these baby buffs.

As children grow, the very delicate and expensive pieces of equipment continue to sit awkwardly on a toddler. In many instances they are prone to flapping or even falling. Hence many parents’ nightmares about their kids losing them in sand pits or the neighbour’s garden. One solution that seems to work well is headbands, especially for babies and girls. Ai Sin Soh, mother to a profoundly deaf little girl, started making her own headbands.

Lynne's Collection

As you can see, not only are they snazzy and pretty, they perfectly hold the hearing devices into place. There are also options out there for all tastes and styles – yes even kids who hate bright and delicate apparel. A recurring comment we hear from parents is that the right kind of headband makes it easier for kids to accept their hearing devices, as they are less physically annoying and even cool.

Several of Ai Sin’s headbands are on sale on Irisada, including models with flowers and others without, glitter elastic versions as well as safety clips. We also have a second vendor called It’s raining bows and if none of our selection works for you, check out Etsy or other vendors like Hearing Aid Headbands (UK).

Solution 2 – Ear Gear, Protection for All Hearing Instruments

Mark Rosal founded Ear Gear in 2005, after many frustrating attempts to keep his little girl’s hearing aids in place. He designed sleeves that could protect hearing instruments from sweat, dirt, moisture, loss and wind noise, as well as protect the wearer from chafing and discomfort often associated with aids.

Interestingly, Mark says “the most popular choice of color has stayed consistent with beige which matches many skin tones. For people who want to conceal their hearing aid, beige is the best choice.” However, never fear, fashionistas, as he adds “for those wanting to make a fashion statement, we’ve got bright, fun colors and custom options to mix and match cords, clips, sleeves and more.”

irisida-product-photo

Ear Gear donates products to many groups around the world, like camps, hearing loss awareness walks or charities. Mark encourages organisations to get in touch at info@gearforears.com. His parting words were for parents: “it’s imperative that parents are persistent when keeping the hearing aids on the child. Hearing is an integral part of a child’s development and taking the hearing instruments off or losing them for extended periods of time can directly affect the success of your child.”

Ear Gear is available on Irisada.

Solution 3 – Time for a Swim

As mentioned in a previous post, there have been quite a few deaf olympic swimmers. Deaf and hard of hearing kids and adults can now swim more easily thanks to ListenLid. This short video perfectly sums up how ListenLid make pools more fun for their wearers (turn the sound up).

Alana Triscott designed ListenLid so her son would “enjoy his swimming school lessons and be able to blend in.” She recalls that “there were a few options, but they were either pretty unusual, blocked the acoustics or involved the device being housed in a shirt.” ListenLid is the exact opposite. As you can see below, the swim caps look pretty much the same as regular swimming caps. What’s more, Alana’s son even uses these caps under helmets when he goes skateboarding or biking.

Photo taken from the ListenLid look book on Facebook.

Photo taken from the ListenLid look book on Facebook.

These caps are to be used for the following devices: iPod®; MP3; Advanced Bionics® Neptune® cochlear implant (up to two devices can be accommodated) and the Naída cochlear implant with AquaCase® (one AquaCase® can be accommodated). ListenLid is also available on Irisada.

Parting Words

Irisada is always on the lookout for other products that could help parents, kids and adults lead their lives to the fullest, no matter their abilities Regarding deaf and hard of hearing needs, we also have batteries and Dry Briks, as well as a selection of toys and games. If you have suggestions, we’d love to hear them and see if we can add them to our inventory!

Additional Links

Some additional links for parents looking for more information. 

  • For more tips on head gear, check out this post on BC Hands and Voice.
  • Recently, books featuring deaf or hard of hearing kids, some with implants, have started coming out. Liam the Superhero is available on Irisada, and explains how cochlear implants works in fun rhyming ways. You may remember Bianca from previous posts, she co-authored Benjamin’s Girl, a four book series about the life of a little deaf girl through the eyes of her teddy bear. To find out more, contact her directly.
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Sports for Kids with Hearing Loss: Keys to Success

/ Mélie Aboul-Nasr / Leave a comment

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. This month we’ll be looking at what parents and specialists have to say on raising children who are deaf or are hard-of-hearing. The previous article in this series can be found here.

“Deaf kids can do anything but hear well”

But apparently some with aided hearing do hear amazingly more than a regular hearing person. But we digress. When we asked Bianca Birdsey, a medical doctor and mother to deaf twins, about extracurricular activities she immediately enumerated her kid’s hobbies. Her children really can do anything: from karate to dancing, including team sports, they are busy!

Duck-hee Lee is an South Korean Teenage tennis sensation

Duck-hee Lee is a deaf South Korean Teenage tennis sensation

Tips for helping kids do sport fall under two main categories. On the one hand, adapting social behaviour and communication patterns, and on the other, finding equipment and technical adjustments. Furthermore, “the challenge is more around socialising,” says Bianca, “especially if people see implants or aids and assume they won’t need to accommodate.”

Adjusting to Deaf or Hard of Hearing Team Members

Listening to Bianca talk about her experience, it seems that many of the adjustments are minor. For example, Bianca explains to coaches that her children will need more eye contact, and lips should not be hidden. These adjustments meet the child halfway, as she learns how to adapt too. As a result, her kids have developed “special powers”, and she marvels at how they can now lip read backwards in a mirror during ballet class.

Tamika Catchings was the star player of the Indiana Fever WNBA team and an Olympic gold medalist. Image courtesy of lovewomensbasketball.com

Tamika Catchings was the star player of the Indiana Fever WNBA team and an Olympic gold medalist.

A good way to make the sports environment more inclusive is to teach coaches, teachers and fellow team members a few words in sign language. Involving the team, by giving them 10 new signs is a great way for them to bond. What’s more, we suspect being able to sign a little might even give them an edge over competitors if they want to share secret information during a match!

Use these Adjustments to teach your Child to Advocate for Themselves

Bianca is very aware that her children will need to learn to advocate for themselves in the future. “What’s important for me is their confidence,” she says, “and I want to model how to advocate in a nice, calm way.” In this respect, a sports environment is a great place for children with hearing loss to realise that asking for accommodations is normal.

In rare instances where coaches put up resistance, Bianca wants her children to see that they are worth fighting for. More than just sports, her children need to know “they are loved unconditionally,” and should not take no for an answer when it comes to their social needs.

Equipment and Technical Adaptations

In some cases, technical gear might be required. Swimming comes to mind, as kids with implants might have a difficult time keeping them dry. Solutions do exist, like the ListenLid Swim Cap, so these children can develop their full athletic potential. In other sports, bigger helmets might be the answer, as well as headbands to hold aids and implants in place. We even saw some creative braiding while surfing for ideas, by the mother of a very athletic teenager.

Terrence Parkin is a deaf olympian swimmer

Terrence Parkin is a deaf Olympic medal winning swimmer

Sometimes technical adaptations are easy for schools and training centres. For example, the dance school Bianca’s children attend turns the base to the floor so they can feel the beats. We bet the experience is also enriching for the hearing kids, who are getting a different approach to dancing.

All Worth the Effort…

Most of all, Bianca is really proud of her dancing deaf children. “They absolutely love their dance concerts, they seem confident and happy. And they have the biggest smiles!” she says. Which goes to show deaf children really can – and should – do anything.

Additional Links

Some additional links for parents looking for more information. Please also suggest more to us, which we can add to the list.

 Final Takeaway

deaf-champions2

 

Photo credits: Duck-hee Lee (L’Equipe), Tamika Catchings (lovewomensbasketball.com), Terrence Parkin (Michael Steele/Allsport/Getty)

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Diagnosing Hearing Loss in Children

/ Mélie Aboul-Nasr / Leave a comment

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. This month we’ll be looking at what parents and specialists have to say on raising children who are deaf or are hard-of-hearing. The following article on hearing loss and sports can be found here.

Studies show that over nine out of ten deaf and hard of hearing children are born to hearing parents. This makes identifying hearing loss and adapting very difficult for families. We spoke to two mothers of deaf children who are happy to share some advice.

The Silent Handicap

Hearing loss is invisible. Many children can go years without ever being diagnosed. Bianca Birdsey, medical doctor and mother to deaf twins, recalls being politely hushed when she expressed her concerns. When she noticed oddities in her children, “people would say “it’s their normal!“”  she recalls. “They would think I was paranoid because I worked in paediatrics.” Bianca even asked a day care teacher if they noticed anything unusual about the twins, “and at the end of the day, she said “there’s nothing wrong with them”!

It took a dramatic scene in a public setting, with one twin crying for her mother, who was standing a few feet behind her, for Bianca and her husband to confirm their intuition: the girls just couldn’t hear. Stories like these are apparently quite frequent in South Africa. Bianca says many children there aren’t diagnosed until as late as five or even later.

Of course, diagnosis can differ greatly from one country to another. Tara Teo, founder of Irisada, gave birth to her daughter in Norway, where children are automatically screened. However, after the first check the nurses told them to come back two weeks later, as there might simply be “water in the ears.” The next test was also inconclusive, mainly because her daughter was too agitated to get good readings. It took an additional two months to finally get consistent readings of one ear and discover Heidi was profoundly deaf.

The Language Barrier

Why is an early diagnosis so important? The first two reasons are linked to how the human brain develops at that early age. Firstly, the early months and years of a child’s life are those where the brain learns how to structure language.  If they are diagnosed too late, they may have missed this critical phase and be left with learning difficulties.

Why? Because deaf children can only access language via visual aides until they are taught sign language or have hearing devices (if their family chooses to). Most families don’t sign at home unless there is already a deaf family member. This means that until a child is diagnosed, they often have absolutely no means of communicating and structuring thought with others.

The second very important factor, is that a child’s brains learns early on how to differentiate frequencies, especially to pick out human voices from other sounds. Tara’s daughter was given hearing aids and cochlear implants at a young age, but she needed lots of additional speech therapy to learn what to listen to in a sound. She’s also working hard to reproduce speech sounds, as she wasn’t exposed to them as early on in the belly as other babies.

Follow Your Child’s Lead

Both parents stress the amount of pressure they were under. “You’re making all these decisions for them” says Bianca, and some people have very set opinions on what is best for deaf children. Some of these decisions can be expensive in many countries, which can make it even harder. There can also be an impression that once your child has aids or implants, things will just miraculously get easier. In fact, the operation or “switch-on” is often just the beginning.

The mothers both laughed when they recalled their children’s reactions as the implants were turned on: pure horror! Bianca even jokes that there’s no point spending hours thinking up the first sentence you’ll speak to your child, as they won’t have a clue what the sounds mean! Imagine coming from a world of silence into a world of continuous noise. A great deal of energy goes into adapting to hearing.

Mothers with a Mission

Bianca’s advice is to “trust yourself”. Don’t let yourself get caught up in the politics around deafness, just follow your child’s lead. “There’s no right or wrong choice”, she says “as long as your child is progressing”. In Bianca’s case, meeting and socialising with deaf adults broke the spiral of grief. In part because she came to terms with a realigned vision for her twins’ future, and also because she was able to master sign language faster. Learning to sign, as a family, allowed them to bond like they never had before.

Tara, meanwhile, was frustrated with how difficult it was to get adapted headbands for her daughter as Heidi’s ears were simply too small to keep the devices in place. She spent hours online, searching for something that would keep the implants in place. She realised there was a gap in the market, and how useful it would be to be able to provide a small solution that could have a potentially huge impact. She felt how wonderful it would be if parents free up time they were spending sussing out where to find special products, to spend with their children instead. With this conviction and simple goal in mind, she founded Irisada, the very platform you’re reading on now.

Additional Links

Some additional links for parents looking for more information. Please also suggest more to us, which we can add to the list.

  • Facts about hearing loss
  • Bianca’s blog, on her experience of bringing up three kids with hearing loss
  • A preliminary list of famous deaf people, to get you started with imagining your child’s future
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