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!

More links and ideas here:

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.

Additional links

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!

 Additional Links
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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.

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

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)

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

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!

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:

Turning Hospital Fears into Positive Experiences

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.

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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.

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.