New Year, Same Promise, Exciting Developments

The old year is closing, the new one is coming. We thought now would be the right time to reflect on 2017 and give you a taste of what is yet to come. As you know, our goal is to become the go-to platform for families in search of solutions adapted to their developmental differences. We’ll continue to pursue this goal.

happy-new-year

Photo credit: Aaron Burden

2017: Developing Community and Awareness

Those of you who’ve followed us from the beginning know Irisada is still young. As the online platform grew, we also wanted to get to know our community better. So just under two years ago, we opened a Facebook page.  This year we worked on strengthening our community of followers and pursuing socially responsible goals.

We held several fun giveaways, including Hua Hee card games to help fight against dementia and Senseez Pillows for kids with sensory needs. We also held a fundraiser to give back to the community when we launched T-Jacket (a vest that helps autistic children relax by simulating a hug) on Irisada.

banner-03

Part of our aim is also to build awareness around a wide range of conditions and explore the kinds of products and anecdotal tips that help families live fuller lives. Over the past six months, we focused on different conditions, striving to share tips from other parents in similar situations. Here’s a quick recap in case you’ve missed some of them:

2018: Same Promise, Exciting Developments

With already more than 300 products available for a range of conditions and abilities, we’ll be continuing to find the best solutions for your families. We’ll expand product ranges and cater to new conditions, including those linked to mobility and the elderly, to give you more choice.

banner-01

As for our community, we’ll be actively discussing specific points in our specialised Facebook groups. One such group is already running (The Discussion Group for Solutions and Tools for Special Needs), feel free to join, and we welcome suggestions for groups you’d like to see set up.

In terms of blog articles, we’ll be delving deeper into some of the conditions already mentioned, reach out to us if you have specific topic suggestions.

We look forward to the coming year with you. Keep following us on Facebook and Instagram. Get in touch with comments and suggestions. And of course, send us product ideas or reviews. You are the reason Irisada exists, you’re part of our story!

Last but not least: Happy New Year and thanks for following our adventures!

Tips for Travelling with a Wheelchair

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

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

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

Ensuring the Destination is Accessible

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

16769-a-woman-in-a-wheelchair-getting-into-a-shower-or

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:

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.

 

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?

homer_british_museum

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.

stevie-wonder

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.

olympicteamtrialstrackfieldday6ix3yi4pvblsx

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. 

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

deaf-champions2

 

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

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.

2017_04_12-leka-happy-front

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.

img_5751

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.

family-harmony

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

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.

boys-say-hi

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.”

not-scary

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.

love-in-the-family-2

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
daringcatsmouse-50x40

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.

wings-elephant-2

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.