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

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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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Sports for Kids with Hearing Loss: Keys to Success

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

“Deaf kids can do anything but hear well”

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

Duck-hee Lee is an South Korean Teenage tennis sensation

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

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

Adjusting to Deaf or Hard of Hearing Team Members

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

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

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

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

Use these Adjustments to teach your Child to Advocate for Themselves

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

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

Equipment and Technical Adaptations

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

Terrence Parkin is a deaf olympian swimmer

Terrence Parkin is a deaf Olympic medal winning swimmer

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

All Worth the Effort…

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

Additional Links

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

 Final Takeaway

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

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A Child I know is on the Spectrum: What Do I Say and Do?

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. This month we’ll be looking at what parents and specialists have to say on raising children on the autism spectrum. Previously we wrote about the diagnosis stage here.

When parents find out their child is on the autism spectrum, it can be difficult to explain to their friends and extended family what this entails. Similarly, often people are unsure how can they can show their support and create bonds with the child.

The First Key Reactions

One of the key messages for friends and family is that each child will be unique. We asked  Lisa, who writes the Quirks and Chaos blog to give us some insight on what a family with an autistic child might need. Her view is that parents are also very different. In her case, hearing the word autism was “devastating” in the beginning. She needed people to listen and sympathise, without ever minimising her feelings, while she mourned the loss of plans and dreams for her son, and fretted about his future.

Kyle Jetsel from the Autism Laughter Therapy is also cautious about the first interactions with a parent that has recently discovered their child is on the spectrum. He warns against upholding false expectations. As a parent with two autistic children, he knows first hand that raising these children can be difficult at times, and may entail considerable sacrifices. Of course, overall, each family learns to love differently, grows and can thrive with their child, but parents should be prepared going into the adventure to “decide they will come out happy”, without trying to “fix” their child.

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Google Autism, Santa, by Lisa Smith, Quirks and Chaos

If you want to do additional research and be part of the parents’ lives, Lisa also advises asking them which book they recommend you read to better understand their child’s case. “The autism spectrum is so wide, the book I recommend might not be the same book your friend might recommend to you.” Showing that you want to read up and better understand will also reassure the parents on your desire to accompany them on their journey.

Interactions Within Defined Social Circles

You may know a family with a child on the spectrum, but not be close to the parents, and still want to do what’s best in social settings, or help put them at ease. Birthday parties and school events come to mind, as it can be difficult to anticipate what sort of interactions the child and their parents can manage and enjoy.

While social environments can be stressful for some people with autism, they also help improve social skills. Lisa’s son Tate attends a mainstream school, and many of the children there have grown with him. In first grade, Lisa gave a talk to the class about autism and explained some of Tate’s behavioural differences.

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Boys Say Hi, by Lisa Smith, Quirks and Chaos

“I remember asking the students to promise me they would always be as nice to Tate as they were that year,” says Lisa. “Those students have made a huge difference for us. When one of them sees Tate struggling to pull on a jacket or find the correct page in a book, they jump up to help him. I’ve been out in public with Tate before and kids have come up to us said “hi”.” According to Lisa, none of these children get the same thing out of a friendship with Tate as what you’d normally expect, but their acceptance of his difference has given Tate a social network of sorts.

Interactions in Broader Social Networks

Lisa also encourages Tate to interact in public, even if it means telling a waiter that he will need more time to process information. Even though interactions with her son can be rather “strange”, as she puts it, and although relationships with him tend to be one sided – with Tate talking about his interests but mostly uninterested by whatever others may want to talk about -, these relationships do help Tate grow and develop. In fact, Lisa also points out that her son has created real bonds, mostly with adults – in part because they are more predictable than children -, and though these relationships take time – and humour – to build, they have had unbelievable impact on his development.

If you are confronted with the case of a child on the spectrum in your community, time and patience can help alleviate the initial awkwardness you may feel. Look to the parents for guidance if you interact with the child or their family. Most importantly, in the words of Lisa: “remember that an autism diagnosis is not nearly as scary as it first sounds. All the fears and apprehension will begin to fade somewhat after a time.”

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We’re doing just fine, by Lisa Smith, Quirks and Chaos

Additional Links

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

Note: all images are curtesy of Lisa Smith (Quirks and Chaos)

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