When to Opt For Cochlear Implants As A Deaf or HOH Adult

Irisada is an online platform dedicated to solutions for differently abled people. We also strive to build awareness in our communities and encourage discussion. Previous articles on hearing loss have been aimed at (hearing) parents of hard of hearing and deaf children. Articles have included: diagnosis, choosing a language to communicate in (part I and part II), keeping devices on kids, sports and activities and cochlear implants on children.

After doing a piece on the tough decision parents face when deciding whether or not to go forward with CI surgery, we wanted to take some time to address the same question for adults. So we spoke with Celeste Torres from Costa Rica, who got her cochlear implants aged 22, and Naama Tsach, PhD, from the American Cochlear Implant Alliance. We asked them about their experience with CI.

When is a Time to Consider CIs?

If you’ve come to this article, you probably have reason to believe CIs are the next step for you. Either because your hearing aids just aren’t strong enough or because you want to experience the hearing world as close as possible to a hearing person. If it’s getting harder and harder to partake in social events and you can’t hear your family in intimate settings, then maybe you’re considering cochlear implants.

As you discuss this with your doctors, you’ll want to ask about success rates in relation to your type of hearing loss and your geographical area, operation risks, (we mentioned some of them here), insurance and how long you’ll need to be operational at work again.

I’m About To Buy the Most Powerful Hearing Aid on the Market

In that case, Naama advises also checking if you are eligible for CI. She says some patients are continually readjusting hearing aids, which can be very frustrating, without realising that a more powerful option is available to them.

 Also, as technology evolves, people who didn’t qualify a couple of years ago might now be eligible. “If you were rejected from being approved as a CI candidate two years ago, you may find out that today you would be a perfect candidate”, she says.

Many people decide to get CIs to better interact with their families (photo credit: Pixabay)

Does Late Implantation Mean I will not be able to Benefit from CIs? 

Absolutely not, though there are different types of cases. For adults who were born deaf, or lost their hearing at a young age, the experience will be different than adults who lost their hearing later on in life.

Celeste was not implanted as a child, because the technology wasn’t adapted to her condition at the time. Aged 19, she found out she was eligible and started considering the operation.  “I met other people, kids and adults, having success with their implants, and the idea of having one began to take root,” she says. Since the implant, her ability to interact with the hearing world has considerably improved.

How Long Will I Take to Adapt to My Implants and How Much Auditory Rehabilitation Will I need?

It all depends. People who lost their hearing later in life will learn how to use their cochlear implants faster. “People who used to hear before, have a large amount of spontaneous auditory learning based on their previous auditory experience,” says Naama. She stresses that they won’t recover “normal hearing” like they had before the implants but in general they will benefit from significantly improved hearing.

It’s important to go in knowing this, so as to not be disappointed by unrealistically high expectations. Rather, “they will be able to get sufficient auditory skills to have good communication in everyday life and to enjoy hearing.” Overall, she underlines how relieved these people are to recover their natural communication methods and hear again.

Others, like Celeste, who had pre-lingual deafness, get best results with more intensive and individualised auditory training, usually provided by Speech and Language Therapist.  A few years on, Celeste has completely changed her relationship to music and language. She’s taking singing lessons and is learning several languages besides her native Spanish.

All this, thanks to very intensive therapy: three sessions per week during the first two months following implantation, then two sessions per week for the next six months. “Besides therapy, I listened to many audiobooks in Spanish and English alongside with their written versions,” she says. “At that time, it was hard to find any apps or computer programs in Spanish, so I had the help from my family to do hearing exercises, like differentiating vowels, Ling sounds, understanding long phrases, etc.”

Naama’s blog is a great source of information for anyone looking to understand (and practice) post-operation rehabilitation. She is a staunch believer in the importance of auditory rehabilitation for all patients.

CIs can improve people’s work conditions and career prospects (Photo credit: Pixabay)

What About My Residual Hearing?

The answer used to be simple: in almost every case, people with residual hearing would lose it when they moved to CIs. This is not necessarily the case anymore. The internal device and surgical techniques have changed, and today, many patients retain a significant amount of residual hearing. Ask your specialist what your specific operation will mean.

Celeste didn’t have a choice, she knew she would lose her residual hearing, but she still decided to go through with the operation. She still thought having CIs would give her the best quality of life. However, many people no longer have to sacrifice their residual hearing when opting for CIs.

How Should I Choose Which Brand of CIs to Wear?

The first point Naama makes is that “all of the CI devices provide excellent benefits.” She adds that “there are some differences in terms of features, and sometimes there may be a medical reason to get one over another so your physician will advise on that.”

In some cases, depending on where you live and what clinic you go to, you may not have a choice. We can only advise you to get several medical opinions and meet others who have been implanted before.

If you do have a choice, consider different features: syncing with phones, water safe processors, upgradability, which ones work best with your lifestyle. You’ll find lots of information on the CI manufacturors’ sites (though presented with a sales pitch), as well as different comparison charts (like this one from Cochlear Implant Help, and this one geared at parents of eligible children).

We hope this article has helped you through some of the questions in your decision process. There’s no one-size-fits-all answer to these incredibly complex medical situations, and we hope you’ll find what suits you best.

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Disclaimer: these blog posts are intended as exploratory articles. They do not constitute medical advice and cannot replace a medical opinion.

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Independent Home Living Ideas for Your Elderly Loved Ones

Welcome to Irisada’s blog. We focus on solutions for families living with differently abled – loved ones so they can live life to the fullest.

As our family members age, their needs can change. To help them live life to the fullest, small adaptations to their everyday surroundings can go a long way. As we recently discussed activities for independent senior citizens, today we’ll be talking about how to adapt their physical and digital surrounding to their needs.

Adapting Their Physical Surroundings

Some doctors estimate that every year, one in three senior citizens suffers a fall at home. Not only can these falls be dangerous, they are avoidable. First, you’ll want to make sure to limit risks of tripping over wires, furniture and clutter, or having to reach too high in cupboards.

Specialists also advise making sure there is enough bright lighting, as darker places, especially stairs, can become dangerous. An 85-year old typically needs three times more light to see the same thing as a 15-year old, so don’t be afraid to deck the house with lights!

Making Bathrooms Secure And Everyday Hygiene Easy

If your older family member has mobility issues, you might want to adapt some of the rooms. Bathrooms tend to be especially tricky. Simply adding grab bars or a shower seat will make their daily routine safer and more relaxed.

You can go even further by making sure the shower enclosure is easy to access (no step, for example) or considering installing a wet floor shower. Since floors are sometimes slippery, nonslip mats or treating the floor with a nonslip solution can make bathrooms (and also kitchens and porches) less risky.

An example of an accessible bathroom. Photo credit: Walk in Showers and Baths Ltd, UK

For caregivers of elderly with very reduced mobility, consider investing in accessories that allow them to avoid the bathroom entirely. For example, an inflatable hair washbasin could be a good place to start. Your loved one will get all the benefits and freshness of a hair wash, without the inconvenience of being transferred to the bathroom.

Last but not least: toilet seats. Getting up and off the toilet can be tricky, which is why it’s advisable to have a higher toilet seat with armrests. You’ll probably want professional help for those kinds of installations.

Other Solutions For Everyday Inconveniences Around the House

Steps and stairs get increasingly awkward. Perhaps your elder could benefit from adding ramps in places where there are steps. You can also install a stairlift or additional railings to stairs in the house, depending on space and feasibility.

But if mobility is a real problem, maybe living on one floor would be safer and allow your loved one to stay independent longer. And though many people dislike the idea of using a walker, having one handy at home can help move around all day with minimal risk.

Many elderly people find getting up and out of bed (or a chair) harder. You can install railings and hoists or ropes to beds to help solve morning issues and buy rising or reclining chairs for the living room. Or if rising chairs are too much of an investment, consider rising assist cushions.

An example of seating assistance in action. The portable pillow cushions the fall when sitting down and assists the lift when standing back up. (Photo credit: Carex)

Last but not least, quite a few personal care products have been adapted for older citizens: nail clippers with magnifiers, zipper aids, shoe and sock aids, to name a few. Don’t forget small adaptations can go a long way, like clocks with bigger numbers, or vibrating alarms for those who are hard of hearing.

Using Technology to Stay Safe and Enjoy Life

Not all adaptations are physical: everyday technology can come in handy since many of today’s elderly people are connected. In fact, some of them actually still have a thirst for technology. And that’s great, first and foremost to stay in touch, as avoiding social isolation is vital to stay psychologically healthy. Simply installing and explaining Skype, Facebook or Whatsapp could make a big difference.

Some of our favourite apps come connected to physical objects, like this app that comes with the Smart Pill Box and keeps track of medication.  Other great apps include Fall Detector, which has a self-explanatory name, and Sudoku or game apps.  We like them because they encompass three aspects of life: keeping track of health, alerting loved ones if something happens, and of course, having fun. 

We hope this article helps with adapting your loved ones home and phone! Remember to send us your comments and suggestions.

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How To Spend Time with Your Loved Ones If Dementia Settles In

Welcome to Irisada’s blog. We focus on solutions for families living with differently abled – loved ones so they can live life to the fullest.

Recently, we’ve been focussing on activities and lifestyle adaptations for elderly citizen’s. Today we’re going to talk about a more sensitive subject: how to spend time with a loved one suffering from dementia.

Warning Signs That Your Independent Elder Needs More Help

Many families struggle with this development. When an active and independent loved one shows signs of no longer being able to take care of themselves, it’s incredibly difficult to determine just how much help they need. And understandably, most elders want to stay in their own home as long as possible, which makes the subject even more sensitive.

It can be hard to figure out exactly how much help your elder needs. (photo credit: Pixabay)

Generally speaking, there’s no absolute rule, especially if your elder doesn’t suffer from a specific medical condition. We found this great guide, (provide your email to download) by Leslie Kernisan, a practising geriatrician. It helps you evaluate what part of your elder’s lifestyle or health might be problematic, and identify suitable courses of action, as well as conversation starters. Thus you can really talk about solutions to specific questions, rather than just tell your loved one that you are “worried”, which might sound too vague from their standpoint.

Calibrating Activities for Elders With Dementia Like Conditions

The important and over-arching rule is to find failure-free activities as satisfaction stems more easily from doing than from an intended outcome. Just because a person has aged and changed, doesn’t mean they don’t need to cultivate their sense of self-worth. In turn, spending time in engaging and satisfying activities limits anxiety, stress and sundowning behaviour. The virtuous cycle helps with everyday life and might even slow the progress of the illness.

Before moving on to examples of activities for people with dementia-like conditions, we’d like to share this Ted Talk by Alanna Shaikh. We like the empathetic and relatable way Shaikh explains dementia (in this case Alzheimer’s disease).

 

What stands out is how many activities have been struck off the list, and the need to find extremely simple, hands-on alternatives.

Examples of No-Fail, Fun Activities For People with Dementia-Like Conditions

Everyone is different, so you’ll want to calibrate these activities according to your elder’s tastes.

In the early stages, your elder might still enjoy playing cards, like memory games or solitaire. They might enjoy Hua Hee, a memory card game specially developed for ageing family members. If your elder still wants to play their regular games, cards with bigger numbers will be easier to read.

An example of a memory box (photo credit: Home Instead)

If they still like looking at old souvenirs or special mementoes, you could make a memory box to rummage through or try this talking photo album, which helps your loved ones recall the memories in the pictures. Jewellery boxes also often have similar functions, though sometimes the memories – or lack thereof – can be overwhelming. You’ll also find that sensory activities help bring back memories, by activating their sense of smell or touch.

Some elders derive satisfaction from activities resembling household chores. You might find they love sorting cutlery, or folding towels and clothes. They will feel like they are doing something worthwhile. And at the same time, they can’t really fail these activities. Some will even enjoy cutting out coupons, for example. This means they have to be safe with scissors, so keep an eye out!

Remember, you can stay creative with your activities: make a (simple) puzzle that represents a special place, set up arts and crafts activities, create themed boxes with fabrics or materials. You know your elder best!

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Independent Living for Your Active Elderly Loved Ones

Welcome to Irisada’s blog. We focus on solutions for families living with differently abled – loved ones so they can live life to the fullest.

Today we wanted to branch out to the older generations in our families. As our parents and grandparents age, their needs and habits change. This article will be dedicated to lifestyle changes that will help your family spend more quality time together. Watch out for our next article that will give you tips on adapting houses for better ageing in place.

Activities For our Active Elders

Often, we barely notice that our elders are ageing. Then we realise that the long hike we enjoyed together actually wore him or her out. Maybe he doesn’t react so well to heat anymore. Or she just seems worried about extended periods standing. It might be time to start changing or adapting the kinds of activities you suggest. Change doesn’t have to be drastic at first, depending on your elder’s abilities.

How fit can grans and gramps stay? (From a very fun series by photographer Dean Bradshaw)

It might seem frustrating if you think in terms of negatives – i.e. what you can’t do anymore -, so stay goal orientated. What’s so great about the hiking? Maybe it’s getting close to nature, or having time alone to chat, or a yearly pilgrimage to an important family landmark. Once you find the reason you love your activity, you can adapt. You could find less remote nature spots or bring a hiking pole to provide stability and help relieve joint stress. Or have a one-to-one dinner together. Perhaps you can drive to that special place. You’ll find new sources of enjoyment together.

You can also discover activities you’d never tried together. Introduce activities that they can comfortably enjoy throughout their golden years, also known as low impact activities. For example, petanque (a stationary version of boules invented to accommodate a former player who developed rheumatism), aqua aerobics and ballroom dancing will work for elders who like to move. Pottery or crafts activities will appeal to people who are good with their hands. And more experiential hobbies like tea appreciation keep the senses sharp.

Things To Do In Singapore

For our Singapore based readers, there are venues in town that are particularly well suited to older citizens. Nature enthusiasts will love the very cool and accessible Gardens by the Bay, the River Safari and the National Orchid Garden.  There are typically rest areas but just in case, you might want to consider one of these smart walking canes so your active elder can take breaks when they tire.

All these places have wheelchair rentals and many have discounts for seniors. The River Safari, in particular, has shaded walkways throughout the entire park, making viewing of the exhibits more comfortable. But do note that once you start the walk, the next toilet stop is a slight distance away, near  the panda enclosure.

The Gardens by the Bay host over 5,000 species of plants – and 2$ daily wheelchair rentals!

Garden lovers will also enjoy the therapeutic gardens, coupled with therapeutic horticultural programmes. The outing will be full of health benefits!

For history fans, the Asian Civilisations Museum and National Museum of Singapore are free for residents, and the galleries are wheelchair accessible and air-conditioned, of course. Generally speaking, many cultural activities are easily accessible to your ageing loved ones. A trip to the cinema or the theatre is a great bonding experience. Just remember to call up and check that they offer accessible seats if your elder is wheelchair bound, and arrive a little earlier than you normally would, so there’s no risk you’ll have to rush.

On a side note: you can still encourage your elder to stay active and practice sports on a regular basis. Singapore boasts quite a few options, including the People’s Association’s Active Aging programmes, Active SG‘s endeavours to find the right sport for each elder, and courses at the Asian Women’s Welfare Association‘s activity centres. NTUC Senior Care Centres also offer social day care and a range of care services for different needs.

We hope this article will help you with your active and independent elder. Before we leave, we’d like to finish with this inspiring video by the Institute on Aging.

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Here are some additional wheelchair friendly products that make your trip simpler:

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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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New Year, Same Promise, Exciting Developments

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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Tips for Travelling with a Wheelchair

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ve chosen a slight variation this week, as the festive season approaches: travelling with a family member with limited mobility.

The festive season is almost upon us! Off we will go to those end of year get-togethers, where we’ll eat copious meals and of course, give and receive gifts. We will probably spend hours in transport to get there, alongside hundreds of millions of people around the world.  At Irisada, we wondered: how do families with wheelchair users cope?

We spoke with Pascale and Hervé, whose experience of physical disability is relatively recent. Hervé suffered a stroke four years ago and is now hemiplegic, with slowed mobility and frequent wheelchair use.

Ensuring the Destination is Accessible

Pascale is in charge of logistics. Her motto is to always prepare for whatever might go wrong. “Whenever we travel, book a room or even visit friends, my first thought is to understand if Hervé will be comfortable and able to move around. I always look at photos, and often call for more information,” says Pascal. The obvious reason, being to confirm how accessible the destination really is, the second being to limit the unknowns in the equation. “We can’t improvise anymore – unless we already know what might be problematic.”

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It’s not always easy to find accessible bathrooms

“When renting, the most important rooms to look at are definitely the bathroom and the bedroom,” she explains. “The bathroom is the scariest place for people who aren’t steady on their feet. Especially when the floor is wet.” So Pascale always makes sure there’s enough space for Hervé to walk around comfortably, or even use his chair if he needs to. They also bring their own material: the invaluable shower stool, a portable shower bench, shower mats and a couple of suction grab bars for the shower.

As for the bedroom, the couple is most vigilant about how the bed is placed in the room. It can’t be too close to the wall, and height can be an issue.  “We recently travelled abroad, and found ourselves confronted with an unusually high bed, which was a big problem.” Hervé wasn’t as autonomous in those conditions, so they’ll be on the watch in the future. As they like to have breakfast in bed and Hervé spends a lot of time reading, they also bring an Invacare Backrest so he can sit up.

Choosing the Right Mode of Transport

So far the couple has tested travelling by car, train and plane. “At first we would only travel by car,” says Pascale, “because we felt more autonomous.” The first few trips were long, perhaps even too long. “I remember once we crossed the border and couldn’t find a place to stop for Hervé to use a bathroom. That was unnecessarily stressful.” They have got better at evaluating how long they can drive without wearing Hervé out. For them, driving is still the most convenient mode of transportation.

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Quan Peng’s inspiring travel story has been picked up in China (for more, see links section)

“We’ve only flown once since Hervé’s stroke,” says Pascale, “and it was not a satisfying experience.” The small awkward spaces, lack of adjustable seating and overall poor organisation did not make them eager to fly again. “I suppose we’ll try again in the future, but it will require more organisation.” Meanwhile, taking the train can be either a smooth ride or a bit of a fiasco. “So far”, says Pascale, “the TGV service in France has been amazing, but in the only other country we’ve taken the train, customer service was less than average.”

Making the Most of the Celebration

Once you get to your party or your holiday home and the room is buzzing with chatter, how do you make the most of the celebration? Both mentioned that in his case, he tires faster in noisy environments. Moreover, Hervé prefers to stand than sit in public, which is also physically tiring. “I like to know there’s a quiet place he can retreat to if it becomes too much,” adds Pascale.

One reason Hervé stands is to maintain eye contact and connect more. “When I sit, I prefer people to come down to my level – sit or bend – so I can see their faces,” says Hervé. “But if I’m in my chair, I don’t want my disabilities to become the centre of all my conversations.” Little things count.

Generally speaking, Hervé is conscious that his social interactions are still distorted by his handicap. “Sometimes people want to give me a hand, but they don’t know how, and that can stress me out,” he says. If a friend or stranger tries to help by holding his immobile side, they will unbalance Hervé. “It’s difficult to ask someone not to help you, or to do it some other way.” Similarly, he needs to draw a line. “Often I’ll say that I don’t need assistance with a certain task because otherwise, I’ll regress!”

And in the end, surrounded by family and friends, his stress and preoccupations evaporate. Good food, loving people and fun gifts have a way of doing that.

Additional Links

Looking for some of our sources? Here are a few we browed on the web. You can send us more by commenting below:

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Everyday Strategies for Life with Diabetes

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.

This month we interviewed Laura, who has lived with diabetes for almost 15 years. Diagnosed as a teenager, she is now an accomplished professional. She reflected with us on how her condition has affected her life over the years.

“This Will Not Affect My Life”

Those were the first words she pronounced, after waking up from the coma induced by the onset of diabetes. “At the time, I mostly worried about catching up with the school work I’d missed out on during my hospitalisation,” says Laura, “and making sure my academic future wasn’t compromised.” She was a quick learner and easily understood how to adapt her food intakes and inject insulin. So it seemed that Laura’s life would indeed continue on her terms.

“Looking back, my parents had a very pragmatic approach to my illness.”  The fact that they let her be autonomous while at the same time reading up and becoming as knowledgeable as possible, empowered her to face the difficulties linked to her illness. “This helped cope with the anxiety of having to save my own life on a daily basis,” she says. They were just as good at keeping the right kinds of sugar lying around everywhere, as they were nudging her to make sure she had listed all the medical products she would be needing for an upcoming vacation.

Blood Glucose Meter Diabetic Finger Test Diabetes

Blood Glucose Meter Diabetic Finger Test Diabetes

At the same time, her parents helped her acknowledge that her condition meant she could now be considered handicapped. “I’m not sure I would have filed the paperwork to get an adapted schedule for my official exams,” says Laura, “because at the time I didn’t really want to admit that my diabetes could affect my stress levels, my memory or my concentration.” Transitioning from a “standard” person to a person with “special needs” was a gradual process.

“Don’t Compensate, Do Things Your Own Way”

Laura’s views on her illness have changed over the years. “I used to deal with my handicap by compensating to do things the same way as everyone else,” she says, “which is ultimately very tiring.” She would always want to finish every hike up to the top of the mountain, avoid adapting work hours to her sugar levels, and for the most part, her diabetes could go completely unnoticed.

Today, she has started to see things differently. She no longer wants to focus on the negatives – like the annoying checklists when packing for faraway travel destinations -, or the ideal achievements she should aim for – like the top of that mountain. “I’ve learnt to let go and accept that I’m already achieving so much, that I can derive satisfaction and pride without aiming for impossible goals.”

With this in mind, she sets up her own lifehacks or daily strategies. For example, when it comes to going to the gym, she has adapted her expectations. “After working out, my glucose levels can slump, despite my best efforts to maintain them, which in turn wears me out and induces a lot of stress.” So Laura stopped going at lunchtimes – to keep her afternoons at work productive – or the evening before important morning meetings. “And now I accept that sometimes, simple physical activities wear me out, and that’s fine, even if it’s non-gym related!”

“Education, Communication, Self Acceptance”

Laura has always explained her illness to her friends and colleagues. “Education is key, from the very beginning,” she says. For example, a diabetic child’s teachers and carers need to know what to do in case of an emergency. What’s more, there can be misplaced stigma and judgement around this illness, which can damage a child’s self-esteem.

A child with diabetes. Picture from www.nhs.uk

A child with diabetes. Picture from www.nhs.uk

However, what she didn’t use to speak up about easily, was her physical limits. Of course, people knew that she had to monitor her sugar levels during physically challenging activities. “Now I’ll ask how long I’ll be walking during a seemingly benign excursion around town or to a museum,” she says, “because, to me, it will make a difference if I walk 30 minutes or 3 hours today.” Being more open – and ready to accept these differences – gives her more leeway to adapt her strategies and reach her goals.

Nowadays, using the word “handicap” is important for me,” she says. This hasn’t always been the case, and she’s grateful that her family, friends and colleagues adjust to her shifting identity as a person with special needs. “My feelings about this part of my identity will probably continue to evolve – and that’s fine.

Final Words and Tips
  1. Being able to pitch the illness in relatable terms is very important. “What I’ve learnt, is that people need to know why I’m telling them about my diabetes“, says Laura. “So I try to use engaging language and explain the person’s role.” For example, teachers might need to be able to spot warning signs, employees might need to know you cannot come in earlier than a certain time, etc.
  2. “I’ve often felt guilty when my reading showed my insulin levels were off track,” she notes, “but really, it’s not a mark or a grade.
  3. Tetraderm plasters changed her life (Laura has medical pumps attached to her body 24/7).
  4. When travelling: Laura uses Frio products to keep her meds cool and special boxes to keep used needles. You can check out some cooling bags on Irisada’s site here.

 

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Diagnosing Sight Loss in Children and Adapting

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 about raising children who are blind or have sight loss. 

This month we interviewed Lea Lay Hong, Vision Teacher at the IC2 Prephouse of Singapore, who specialises in assisting those with sight deficiencies in learning how to adapt. She is also the mother of two children with visual impairments. The elder now studies in a polytechnic school and the youngest is still in a mainstream high school. Both are national para-swimmers!

Step 1 – Red Flags and Diagnosis

We asked Lay Hong what telltale signs could alert parents as early on as possible. Some symptoms seem more obvious than others: if your child is bringing things close up to their faces to look at them or shows signs of ocular discomfort (like rubbing their eyes excessively), a trip to the eye doctor could be in order.  She advises also to consider the child’s eye movements (are they jerky?) and whether the child is directing their gaze at people and objects.  Does he seem interested to look at people speaking to them? Does she startle easily when you pick him up, does she seem surprised when someone starts speaking near her?

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Homer, the celebrated, blind poet of Greece

All these signs may not specifically mean that your child is blind, but they can help initiate the right discussions with your doctor. Then, and only then, can you start testing your child’s eyesight to discover if there is a problem. It’s important to remember that “a definitive diagnosis is not possible at the first or initial visit”. In fact, Lay Hong explains that “many conditions are progressive so a diagnosis may not be possible until some years later

 

As the medical investigation continues, parents and caregivers need to move on to finding ways to help the child continue to learn. As says Lay Hong, “What is important is not so much the diagnosis per se, but knowing what your child can or cannot see, and how to ensure they are still able to learn like their peers.

Step 2 – Finding Support and Becoming Empowered

As with many conditions, most parents go through a grieving phase when they find out their child will have a different life path than expected. Moreover, “because visual impairment is a very low incident disability, chances are [the affected parents] do not know of anyone else going through the same ordeal as they are.” Thus Lay Hong stresses that parents should find support networks as soon as possible. There they will get emotional support – or counselling when needed – as well as knowledge and insight regarding their child’s education process.

“Remembering that the child learns differently, and knowing what adaptations or modifications are needed to enable the child to learn is important,” says Lay Hong.  There is no “one-stop” solution, but there will be a combination of adaptations that will give your child the tools to reach their full potential. Moreover, Lay Hong is optimistic and ambitious for kids with sight loss. She states that they don’t usually have slower learning curves than other children if concepts are presented to them in accessible ways, i.e. tactile methods.

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Stevie Wonder was a child prodigy and musical genius, blind since shortly after birth.

For completely blind children, however, the learning curve might be different as “their acquisition of information is linear, moving from one to the other. It is difficult for them, especially at a very young age, to understand complex relationships between objects, ideas, etc.” In this regard, common difficulties may include using concepts like “otherness” and “permanence”. In the first case, blind children sometimes have trouble with the use of pronouns – I, you, me, them – and in the second, they may cling to objects and people, fearing that once they let go, they will disappear.

Step 3 – Fun, Games and Everyday Life

A recurring theme in bringing up kids with sight loss is how to ensure they are included in games and activities with their peers. Parents sometimes worry that they will be left out, or games are difficult to adapt. Yet, according to Lay Hong, certain simple good practices can go a long way to helping them interact.

They should be included in all family activities, mealtimes, outings, shopping, etc, as much as possible,” she says. Other tips can be easy to implement even outside family circles. For example “conversations directed at them should begin with their names, so they know they are being spoken to.” And when in group situations, telling them how many people are in the room (as well as their names) and encouraging them to call out to those in the room to organise activities or games, helps them become more autonomous.

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Marla Runyan, legally blind, competed and won in both para and able-bodied competitions

According to Lay Hong, any game can be adapted. Want to play football? What about using a ball with bells inside (and possibly smaller teams) so that everyone can find the ball? Cards with Braille or other tactile methods mean they can be part of fun games. Lay Hong notes that visually impaired kids are frequently left out of games because the rules aren’t explained in an accessible way, or others simply assume they cannot play.

Final Words – Always Assume the Impossible is Possible

Lay Hong encourages parents to never take no for an answer. “Do not accept when people tell you your child can’t do something because he can’t see,” she says. “Find out, if there are different ways to go around doing the same thing.” Sometimes you will have to advocate and be strong to make sure your child has access to quality learning. So read up and stay up to date.

And most importantly, remember that you know your child best, and are his or her best ally. You will be constantly explaining how your child is unique, so find simple ways of getting the right message across. For example, “instead of saying “My child has constricted field of vision due to retinitis pigmentosa”, you may simply say “my child has difficulty seeing things around him, and may need some help when moving around, especially going down the stairs, or if there are obstacles around him”.”

Additional Links

Some additional links for parents looking for more information. 

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