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

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. The next few months we’ll be focusing on parents of deaf and hard of hearing kids. This article follows a previous article here.  Last time we spoke about deaf kids was here: Diagnosis, Keeping Devices on Kids, Sports and Activities.

Part I focussed on the importance of early language acquisition and briefly reviewed different methods. This article will draw on the experience of three people with different perspectives, to give you more informal insight.

We were very lucky to have input from three experts and parents. Phoebe Tay is a Deaf teacher from Singapore. She speaks of her journey growing up oral in a predominantly hearing society to discovering the Deaf community, where she learned about Deaf culture and Deaf identity. Toshiko Clausen-Yan shares experience as a hearing mother to a multilingual oral son. We also spoke to Joyce Lew, a speech-language therapist and certified auditory-verbal therapist who migrated from teaching using the auditory-oral method to concentrating on auditory-verbal.

A Speech-Language and Auditory-Verbal Therapist on Oral Methods: Joyce Lew’s Experience

Joyce started her career in Singapore at a time when screening tests were rarer, and kids came into her office quite late. “They had already learned how to get by with lip-reading and mostly came from hearing families”, she recalls. Their families didn’t really have the time to learn a whole new language (like signing) to be able to stimulate them soon enough. “Parents were really just desperate to connect with their kids. They wanted activities to do that would teach their kids language, now.”

Joyce initially focussed on auditory-oral methods. “But research [at the time] suggested that if we continued teaching kids language through lip-reading, they would likely plateau in language acquisition because we read and spell based on how words sound.” So she decided to test auditory-verbal methods in her work.

At first, it was difficult for children to accept to learn relying only on their residual hearing. “It felt extremely unnatural at first,” she says “we had to think of all kinds of ideas to bring the focus away from the lips. But within a few months, there were moments of automatic listening and verbal responding while the kids were busy with their heads down in play.”

In some cases, residual hearing can be used to access language.

A few years later, as newborn screening became mainstream and more and more hard of hearing babies arrived with hearing devices, auditory-verbal became a norm. She says “some of the reasons are associated with the relative ease that babies experience in getting used to hearing devices and in learning how to listen without first learning how to lip-read.”

After a decade in her field, Joyce is convinced communication is key to developing language. And that parents tend to communicate more with their child if they are comfortable with the chosen language.

From Oral to Signing and Deaf Culture: Phoebe Tay’s Journey

 

Phoebe’s life changed when she started to use both English and Auslan

Phoebe was born deaf and diagnosed around three and half years old. At the time in Singapore, oral methods seemed to be the only option. Moreover, spoken and written English were expected to be understood by everyone. With the use of hearing aids and residual hearing, Phoebe was able to pick up English. She fared well enough in school and her language skills “started to bloom from upper primary onwards.”

 

Yet communicating wasn’t always easy. “It was okay to communicate in one to one setting”, she says “but classroom and group settings were tough.” Phoebe points out that language development is not just linked to academia, but also to social development. She felt like she couldn’t quite fit into the hearing world. Almost like language was a barrier.

Then she went to Australia, where she learned Australian Sign Language (Auslan). She suddenly discovered a language she could acquire, as well as a whole new culture. “I started to feel more confident, and signing helped me get a better sense of self-esteem.” Realising that she could use both Auslan and English changed her life.

There’s growing evidence that being part of a Deaf community and developing a Deaf identity helps build a child’s resilience. For Phoebe, this effect was palpable even as an adult. “I use aids, but they have their limitations. And they don’t make me a hearing person.” At the end of the day, “some kids will fail at oral methods no matter how hard they try because they simply can’t hear enough”. They still deserve to have a language they can succeed in naturally.

When Cochlear Implants Are Combined with Auditory-Verbal Therapy: A Mother’s Modern Tale

Toshiko’s second son was born profoundly deaf. Her family chose to give him the most mainstream life possible. This was possible according to doctors, who recommended cochlear implants at a very early age: only seven months old! Despite their natural fears regarding invasive surgery and the high cost, they chose this option.

Of course, this meant many years of intense speech therapy. “As soon as he had his cochlear implant, he got the same exposure to language as a hearing child,” she says. Sometimes it can be hard to get children that young to focus on tasks (like speech therapy) and keeping their devices in place, “but you have to keep in mind the long-term goals.”  Over time, her son has been able to learn several languages, including English, Mandarin, Japanese and Norwegian in natural settings.

Implants are getting more and more sophisticated and invisible.

For Toshiko’s son, the implants worked so well he can hear very minute sounds. “The advancement of technology has made this possible and we embrace all advancement that makes life simpler and better,” she says. In fact, he can now pick up calls directly to his implants, which he thinks is pretty neat.

She has a few words of encouragement to parents of children born deaf: surround yourself with people who are supportive and positive. “I did not allow people to cry or feel sad for him in front of him,” she remarks. “Stay positive, and keep your child feeling positive.”

As a brief conclusion

We hope these three testimonials will help you with parenting your child. Remember: each family is different. We hope yours will thrive!

Additional Links

Looking for some of our sources? We used some of these links. Send us more by commenting below!

Disclaimer: these blog posts are intended as exploratory articles for parents of recently diagnosed children. They do not constitute medical advice and cannot replace a medical opinion.

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.

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Photo credit: Aaron Burden

2017: Developing Community and Awareness

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

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

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

2018: Same Promise, Exciting Developments

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

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

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

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

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

Turning Hospital Fears into Positive Experiences

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ll be looking at what parents, specialists and people with diabetes have to say about living with the condition.

We’d initially planned to cover the difficulties faced by diabetic children learning how to use needles on a daily basis. But kids with many conditions face a common fear of medical setting. So we spoke to Esther Wang, an entrepreneur and inventor, whose innovative approach to children’s health education is having an impact in hospitals around the world.

Explain Away the Fear

Esther Wang wanted to design a product that would answer this specific need expressed by hospitals in Singapore: when kids are brought into hospitals, they are usually scared. She started by immersing herself in hospitals and watching kids interact there.

Her first conclusion what that most of the fear stemmed from a lack of understanding of medical procedures. Children needed more than words and explanations, they needed an experiential approach. She started testing ways children could learn and understand the purpose of their visits. The challenge was to turn healthcare moments into experiential learning.

There was also another issue at hand: when children don’t understand medical procedures, they can feel hostility towards medical staff, or betrayed by their parents.  This needed to change. “Family ties should grow stronger through these experiences,” says Esther, not weaker. Similarly, it’s easier for medical practitioners to work with kids who understand they are all on the same team. They too, need to have a positive relationship with the child, albeit a very different bond.

Rabbit Ray pack

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

How Rabbit Ray Works

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

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

Kids playing with Rabbit Ray

Kids playing with Rabbit Ray

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

Real Situations Rabbit Ray has Saved the Day

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

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

Happy Nurses with their Rabbit Rays

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

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

Additional Links

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

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

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. 

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

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.