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.

alibaba-wheelchair-traveler-branding-in-asia-magazine

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.

Rabbit Ray pack

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

How Rabbit Ray Works

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

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

Kids playing with Rabbit Ray

Kids playing with Rabbit Ray

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

Real Situations Rabbit Ray has Saved the Day

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

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

Happy Nurses with their Rabbit Rays

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

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

Additional Links

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

  • Rabbit Ray is available on Irisada, here.
  • Rabbit Ray on the web: here 
  • A short TV report by News Channel 7 WJHG.com.

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.

 

How to Keep Hearing Devices on Kids

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

Finding Helpful Solutions to Keep those Devices on Kids

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

Solution 1 – Babies: Scarves and Headbands

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

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

Lynne's Collection

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

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

Solution 2 – Ear Gear, Protection for All Hearing Instruments

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

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

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

Ear Gear is available on Irisada.

Solution 3 – Time for a Swim

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

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

Photo taken from the ListenLid look book on Facebook.

Photo taken from the ListenLid look book on Facebook.

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

Parting Words

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

Additional Links

Some additional links for parents looking for more information. 

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

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

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

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

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

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

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

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

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

Here is a checklist from Understood to prepare for

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

Team Irisada

Preparing Heidi for Singapore Kindie

As we are one month into the Singtel Futuremakers incubation programme, activities and workload intensify. As busy as Tara, our founder, is, she’s got to get Heidi, her daughter, used to the life in Singapore for the next couple of months.

Despite the jetlaggedness (is that even a word?) of the kids, she drags herself and Heidi to a kindergarten that she found. Thank god for them, as many kindergartens are not ready to accept kids for short periods, or already have a long waiting list and long, we are talking about a year. And we thought Singapore has a low birth rate issue.

After the first bout of good luck, comes a reality check. The first problem she faced, kindergartens in Singapore are not as well prepared to care for kids with special needs. But thankfully, this kindergarten is willing to try. So after gaining some experience from Norway, where Heidi goes to school, and some help from Singapore therapists and advice from her Norwegian therapists, she’s compiled a short list of some tips to prepare your kid and yourself for kindergarten.

  1. Look for a smaller kindergarten so that teachers manage lesser kids and a dedicated teacher can pay more attention to your child.
  2. Rooms should have good sound proofing and floors should preferably be carpeted. If that’s not possible, suggest the kindergarten to put paddings on chairs to reduce the noise level.
  3. Conduct a session to educate teachers about the devices and the child’s condition. Better still, bring in a therapist before your child starts the kindergarten.
  4. For older kids, it would be great to conduct a learning session for the rest of the children about hearing loss and the devices. Present it in a positive and light-hearted tone.
  5. Bring in a therapist after a few weeks to conduct an observation.
  6. Always have her teachers’s mobile number and make sure they have yours.
  7. This list is not exhaustive but since we promised it would be short, one more thing we thought was useful is to create a poster so that teachers and other kids can read about hearing loss and the devices. We have attached the sample in this post for your reference. (psst, the daddy made it, so it isn’t all that professional looking. But nonetheless kudos to him and all copyrights are his.)

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We apologise if the image is not clear enough on wordpress. If you would like a copy, simply email Tara at tarateo@irisada.co. I’m sure she is more than willing to share the original copy.

Below is the chinese version, since most Singapore kindergartens are bilingual.

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