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. 

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.

Funding Campaign – The Interstellar Board Game for the Blind

Every month we focus on parents 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 blind or have conditions related to vision impairments.

October 12th is International Sight Day, so at Irisada, we thought it would be a great month to highlight cool products and causes around blindness. We’re kicking off the October with a very special fundraising campaign to support Interstellar Fantasy Flight, a unique board game designed especially for blind kids. I interviewed the creator and designer of the game, Annie (佳芝), to learn more.

Stage 1: Early Years and The Realisation  

20901654_2071918266363334_2670588857863537285_oAnnie is currently a PhD student at the National Taiwan University of Science and Technology, majoring in Design. “I first got involved with blind children and their families in high school”, she says. “After I started volunteering, I gradually came to understand how being blind affected their lives and education.” She realised that blind children are missing out a seemingly small aspect of childhood: board games.

Yet from an educational and social point of view, they were losing much more than just the opportunity to play. As we’ve mentioned again and again and again, play is an integral part of learning. So Annie started applying her design knowledge to their specific needs. First she made a dice with bold braille numbers, which turned out well.

Then she realised that she could make a whole new game from scratch. So she set about creating something new, with two objectives in mind: 1) fun, of course, and 2) helping children acquire new skills. “At first I wondered if we should focus on the fun aspect, but their passion for knowledge touched us, and gave us the motivation to improve their education.”

Stage 2: Designing Interstellar Fantasy Flight 

Annie started working on a concept game to help blind children develop numerical skills: counting, adding, subtracting and other basic maths. “Contrary to seeing kids, they have less opportunity to familiarise themselves with these concepts, and more importantly, they can only access them through touching,” she says.

A brand new game was born: Interstellar Fantasy Flight

A brand new game was born: Interstellar Fantasy Flight

At the same time, Annie wanted the game to be social and inclusive. “We designed the game to be played with their parents and their seeing friends”, she says, “so that it creates a social moment all together.” It’s also based on a theme that all children can relate to, interspace and spaceships, which gets their imagination fired up, and is very cool to them.

So now you’re wondering: how does it work? The aim of the game is to build a space craft. To do so, each player needs to collect a certain number of ores, which are represented by different shaped pieces (round, square, pentagon etc.). To get each piece, they need to randomly pick a ball from a jar. The balls have numbers on them (in braille) and the kids then perform basic maths problems. Players take turns, and the first player to complete their space ship wins.

A glimpse of the space ships and ores

A glimpse of the spaceships and ores

“It took about eight months to make and test the game. We’ve tested it multiple times and about 30 people (seeing, blind, adult or child) have already played” Annie reflects. The tests take place in two Taiwanese schools for the visually impaired and so far the feedback from children and parents is very positive.

Stage 3: Production and Distribution

Interstellar Fantasy Flight is now ready to be produced and distributed. This is where Irisada and our readers come into play. We at Irisada are always on the look out for products that will appeal to children with different learning needs, and this game stood out.

We’ve teamed up with Annie to help her raise funds to pay for the first batch of production and to give the game to specialised schools and institutions in Taiwan. The game is also available to pre-order on our site. If you’d like to lend a hand, you can access the crowdfunding campaign here, and if you’d like to have your own game, you can pre-order it here.

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)

We Got Mentioned

We got mentioned in Today Online here: http://m.todayonline.com/lifestyle/crowdfunded-card-game-meant-elderly-receives-over-200-orders-two-months

Also here: https://www.asiaforgood.com/article/portraits-purpose-tware

And here: https://vulcanpost.com/605880/social-enterprise-singapore-bompipi/

Playing with Children on the Spectrum: Developing Faculties and Playtime

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 and helping parents here.

All parents know that play is fundamental in a child’s development, be they neuro-typical or facing specific challenges. But playtime is also a unique moment to interact with your child and create bonds. We spoke to Delia Yeo, a speech and language therapist, and Ladislas de Toldi, co-founder of Leka, to know more about how play can help children on the autism spectrum develop skills and bond.

Playing and Engaging with People

Games stimulate and motivate children, through fun and the desire to win. Yet both experts stress that children on the spectrum often have difficulty engaging with playmates, remembering  rules or using all the concepts necessary to win.

Therapists like Delia “look at several aspects of how the child plays to understand how he or she understands the world”. Like an alternative mapping, Delia is able to identify what types of play are easy, which ones are hard. She chooses specific types of games accordingly centred on internal feelings, external sensations, sitting, physical activity, etc.

In some cases, Delia has to teach a child to play before she can teach them skills through play. She starts with simpler games, ensuring she can interact and engage, before moving on to complex games. Most importantly, she has to look for what the child enjoys. “I choose the game depending on the child’s interest, [so] they [will] have a gleam in their eye and connect”.

Games and Technology

Traditional games like hide and seek, puzzles, swings or anything another child might play are used to help autistic children learn skills. Nowadays, thanks to technology, new games have emerged, some of which are more high-tech than anything a neuro-typical child will use.

Take Leka, for example, a small, round, ball shaped robot developed by a French start-up with specialists in several countries. The robot uses artificial intelligence and is designed to help children progress on their cognitive, motor, social and communications skills. Less intimidating than a human, the robot interacts directly with children, setting the rules and congratulating them when they succeed. They get a real sense of accomplishment when they are able to crack the game. Amongst other games, Leka plays hide and seek and Simon Says, and new games are added every week.

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Leka, the robot, happy face

“The most important thing”, says Ladislas “is figuring out what each child enjoys. It’s the only way to open the door. And if they only like Dreamworks animated movies, then so be it.” In fact, Leka are very humble in their approach. They advise parents and organisations consider all their options before investing in Leka, because at the end of the day, their objective is to make sure the robot is bringing out the best in children.

“There are so many incredible new ways of interacting with children on the spectrum now. I’m impressed by some apps on the iPad, that have non verbal children interacting with the world, and I’m stunned by how apps like Sidekicks are helping people with autism communicate with their families.” Children on the spectrum can greatly benefit from technological playthings, which unlock new opportunities to learn and communicate.

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A child plays with Leka the robot

Is All Play Work Disguised as Fun?

Delia recommends that “parents should always play without a teaching goal in mind”. The tendency to test their child might take all the fun out of playing. Just the act of spending quality time together and fostering engagement is valuable. As they play together, the child will learn some things naturally from them, in a softer, less goal oriented way.

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Family play time, in this case with Leka the robot

“My advice is to simply follow your child’s lead. Join and imitate her at first, and as your play grows, her ideas will grow too. You’ll be “teaching” by supporting her experience in play”. As you do so, Delia suggests introducing your ideas and small challenges into games. They will encourage your child to problem solve around them, or create unity in a scattered game.

Delia recalls an autistic teen who was brought up with very little play. “He was very compliant and would carry out tasks, but seemed robotic and detached.” Recently, as she has worked around discovering what he likes and doesn’t like, and developing his ideas through play, she has seen the teen grow in confidence and become a real playmate. “He used to interact because he was supposed to, not because he wanted to. Now he’s pulling his weight in our interaction!”

Happy playtime!

Additional Links

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

  • For more about Leka you can also visit here. Leka is currently looking for financial partners. Contact Ladislas at ladislas@leka.io for any inquiries,
  • An example of a sidekick app,
  • A review of Ron Suskind’s book on using Disney sidekicks at home to communicate with their son Owen,
  • Link to the film about using Disney sidekicks. 
  • Autism Speaks has a very long list of apps here

Note: all photos in this article are curtesy of Leka

Diagnosing Hearing Loss in Children

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

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

The Silent Handicap

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

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

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

The Language Barrier

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

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

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

Follow Your Child’s Lead

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

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

Mothers with a Mission

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

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

Additional Links

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

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

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.

google-santa-autism

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)

Diagnosing ASD and Unlocking Each Child’s Potential

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.

A recurring question around the autism spectrum is: what signs appear first? In other words, how can parents know their child is on the spectrum and when should they consult specialists?

When and how can parents know something is unusual?

According to Doctor Jean-François Havreng, a development specialist based in France, some parents express concerns for their child from six months old. Often, they find the parent-child bonding process unusual, for example eye contact is rare or inexistent, the child’s body is hyper or hypotonic when held, or the child might seem deaf. Children any age can show signs of autistic behaviour, though Doctor Havreng is careful to point out that in the early stages, cues and hints are not definitive proof. And though in some cases these signs do indicate the child is on the autism spectrum, they might have an entirely different condition, or even just display oddities now and later develop along a mainstream learning curve.

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Love in the Family, by Kenny Tan

Doctor Havreng’s team runs an open clinic, located outside the hospital and in the center of the city, where parents can easily bring their children to meet professionals without stigma or fear. Trained specialists take the time to get to know each child, consider whether they present developmental delays and suggest tests. All the while, parents and their children are kept in a child friendly environment, with suitable toys and attractions.

There’s no way to understand a child’s developmental specificities in a few minutes. With this in mind, his centre takes a slow, measured approach to diagnosis, ensuring parents don’t feel overwhelmed. During each phase, the child interacts with several specialists, though the atmosphere is voluntarily not too medical (for example, no intimidating white lab coats), and more often than not, multiple evaluation techniques are applied to confirm and explain a diagnosis.

Diagnosing Unique Children
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Daring Cats and Mouse, by Kenny Tan

Each case of autism is unique. Understanding how a child on the spectrum can develop is complex, which is why Doctor Havreng recommends finding doctors with “extensive experience of developmental delays, including but not restricted to autism.”

The diagnosis gives parents a single word to explain and describe their child’s development. But for Doctor Havreng’s team, the diagnosis is just the beginning of a more important and fulfilling task: finding how children can thrive,  acquire skills and live a fuller life.

Focussing on Potential

Vincent Tan’s son Kenny was diagnosed aged 18 months. When he was finally given a name to put on his child’s uniqueness he felt both relieved and overwhelmed. He knew raising his child would indeed be challenging, but now he had clues about what that would entail.

His advice is to start with whatever issues feel the most pressing, asking other parents what they have tried. Some start by trying to make their child table ready for school – when appropriate -, others work on getting their child to stop specific behaviour patterns that create awkward or dangerous situations in the home. The quest for solutions is part of an overall discovery process to identify what makes your child tick.

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Wings Elephant, by Kenny Tan

Vincent admits the process has been difficult. There are many ups and downs and there is often no way of comparing or monitoring a child’s progress. In fact, comparisons with the development curves of other children, especially neuro-typical, can be demotivating and disappointing, as though their limited achievements reflect poorly on all the parenting put into their development.

From Childhood to Adulthood

Kenny is now 23, and has learnt many skills. He can ride a bike – in a safe environment without cars for example -, he can swim, and he has become an accomplished painter, selling his artwork in Singapore via the Everyday Revolution. He can read quite well, and enjoys reading classic literature works by Charles Dicken, George Orwell and Harper Lee. Writing independently, on the other hand, is still a challenge and needs a lot more work. In his father’s words “the most important trait is his willingness and his perseverance to try whatever the caregivers can have the patience to teach him”.

When Vincent reflects on the early years of his son’s education, he advises other parents to surround themselves with support groups, and get to know those who have similar problems. “Learn from their experience and experiments, together you will be more resourceful,” he says, with optimism.

Additional Links

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

  • A short video to help explain how the world feels for people on the spectrum, by Amazing Things Happen
  • An (old) Letter to the new autism parent, by Eileen Shaklee (Autism with a Side of Fries)
  • 15 truths about parenting special kids, by Lisa Smith (Quirks and Chaos)
  • New words for parents of a child on the spectrum, also by Lisa Smith (Quirks and Chaos)

Note: all the artwork in this article is curtesy of Kenny Tan.

HOW TO USE THE RIGHT PUZZLES FOR YOUR HOME THERAPY NEEDS (PART 2)

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In our previous article, we talked about the benefits of puzzles and the types of puzzles to choose from. Now let’s be practical and talk about how to teach concepts with them!

HOW TO TEACH?

How do we teach a child how to solve a puzzle? We went through some speech therapists, occupational therapist, homeschooling and Montessori style articles and extracted some ideas. We’ll also be referencing back to the same article in  HubPages.

Non-connecting puzzles with just 2 – 4 pieces are good for kids at a developmental milestone or age of 0 to 24 months. The ones with big pegs are good for gripping for players with not so good fine motors skills, so the child can focus on the matching activity without getting too discouraged.

It is recommended to progress to puzzles with more pieces after they have mastered the smaller ones. When first working on bigger puzzles, present a few pieces at a time. Let them play with those pieces and figure out the pictures first before attempting to match.

For alphabet or number puzzles, it is also a chance to work on letter or number recognition and speech (sounds of consonants and vowels). Separate the pieces by rows and present them one row at a time.

Connecting puzzles  are more complex and can feel like a leap from their non- connecting counterparts. They require far more advanced perceptual skills. Most of them do not have reference pictures and therefore require the child to either work on memory or on logic, which they clearly have not fully developed yet. A tip that Rose Mary shared was to trace the pieces on the board or keep a notebook of pictures of the finished puzzles. Heidi Song suggests writing the numbers behind each piece and on the board itself. How simple and smart these suggestions are!

Interconnecting puzzles are typically jigsaw puzzles. If your child does not have the focus for a bigger puzzle or you do not have enough time, simply get your child to work on small sections of the puzzle at a time.

OT mom here has 2 methods of working with puzzles. One is to work on the borders first. The other is to group similar pieces together like what Rose Mary did here.

With jigsaw puzzles, you might have to spend a fair amount of time setting up. Make sure all puzzles pieces are faced up before starting the game with your child. This will help children with limited patience who may lose interest if parents take too long setting up. Another method is to involve them in the set up by getting them to help flip over the pieces that are facing down.

It is also useful to note that, before starting a puzzle, it is good to lay down some rules so that children can benefit from the session. For jigsaw, we should encourage children to take a good look at the completed puzzle before taking the puzzle apart. We should also remind the child to work on  one puzzle first before moving to the next to avoid distraction or getting  pieces mixed up.

 

WHAT ELSE TO THINK ABOUT?

A Special Purposed Life, a pediatric speech therapist blogger, walks us through what to think about when buying puzzles. Depending on their stage of development, one can choose puzzles based on the speech goals we want to achieve for them.

For instance, if your child is working on single words, use puzzles that have animals, vehicles, fruits and so on and work on words like animals sounds (‘moo’ for cows, ‘baa’ for sheep, ‘beep-beep’ for cars, etc). Every time they respond to the sound, be it mimic or mouth the word, reward them with the piece and guide them to put it in the right location. Other words they can learn are verbs and preposition such as ‘go’, ‘move’, ‘in’, ‘put’, etc. (We will, in future, include a list of sounds you can make for each type of object.)

If they are working on two words or more, you can say things like ‘I want dog’ or ‘I want the dog’, ‘Find the truck’, etc. You can even find puzzles to teach colours and sentence structure at the same time by saying ‘I want red bear’, ‘I want blue bear’, etc

Are they working on a particular consonant sound such as /b/, /p/? You can use alphabet puzzles to work on these sounds by applying the same technique as used for the animal puzzle. Or you can reuse the transportation puzzle, by presenting a boat for the /p/ sound. This was what we learnt at AVT: say /p-p-p/ and when the child responds, present the boat. Let the child play with it for a while and get him or her to place it in. If the child does not respond, present the boat anyway after the third articulation. If using the alphabet puzzle, do not attempt all letters at one sitting.

It is important to note that puzzles with sounds might not be recommended for training speech as it can be distracting and the human voice is after all better than mechanical sounds. However, for the purpose of occupational therapy, it can be something fun and more attractive to a child with ASD, for instance.

Additional tips: for families who are bilingual, allocate one language to one parent. Play the same puzzles in the same manner but with both languages at separate sessions. This introduces variety so the child can familiarise herself or himself with concepts without getting bored. Also, the consistency helps the child be effectively bilingual as he or she has a good learning model for both languages. At the same time, the other parent can take a break (play can be exhausting for adults too!)

 

Check out these other articles for even more ’puzzling’ tips:

 

Check out these videos too:

 

Do visit our site for more exciting products. Our vendors are not big warehouses, but therapists or specialists in the field and are experts in selecting and curating products carefully and meaningfully. We work hard to bring to you as many great products as we can source from around the world so you can make the best choices for yourself.

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Team Irisada