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Kids Learn By Example to Meet the Unexpected

Use Child's Curiosity to Open Talk About Those Living with Differences

Anyone visibly different knows about the stares--and the occasional comments--they attract when out in the community. For Phil Crowson, it's when he rides the bus and kids spot his guide dog, Faith. "They're always asking their parents 'What's the dog for?'" says the 61-year-old intake and referral officer at Victoria's CNIB.

Artist Mark Heine's 15-year-old daughter Charlotte has cerebral palsy. Someone always looks a little too long when she's out in her wheelchair. Heine finds the youngsters are "pretty much the most blatant."

That's to be expected if the child hasn't been exposed to those with differences through family or a classmate, according to Donna McGhie-Richmond of the University of Victoria's education faculty. "Of course, you might stare because you're trying to understand. You can't figure it out," says McGhie-Richmond, a special-education specialist.

Kids being kids are not shy about reacting vocally--possibly to a parent's embarrassment--about what they are seeing.

"There's always going to be situations when the child stops, stares and asks questions," says Linette Baker, program director of Community Living Victoria, which assists those with developmental disabilities.

That's understandable, according to Michael Lax, vice-president of the B.C. Association of People Who Stutter. For children, there's the uncertainty, particularly when encountering those such as himself without any noticeable physical differences. They don't readily understand what's happening and why, says the Victoria chiropractor.

Kids are not being rude but curious, McGhie-Richmond says. Crowson agrees their questions are sparked by curiosity. "They're just not used to seeing dogs on a bus," he says.

Use the child's curiosity as an opportunity to talk about those living with differences, Baker says. She has stepped in to help a floundering parent answer a child's questions about her clients.

Some parents hesitate to ask directly, as they worry about invading the individual's privacy, Baker says. If they do ask questions, they are more likely directed at the individual's companion. Baker's care workers know always to include the client in any conversation in public.

"Quite often kids with special needs get talked around," Heine says. If they ask "what's wrong or why the wheelchair," parents should encourage them to ask those such as Charlotte. She is quite capable of answering questions, he says.

If Charlotte sees kids staring, she'll say "hi." Often this isn't a conversation-starter. "When she says 'hi,' they get scared and turn away," Heine says. Those who do respond usually do so only with prodding from a parent.

Lax thinks parents should defer any explanation until later. "I think it's hard to say something to the child in front of the person stuttering," he says.

McGhie-Richmond suggests parents quietly acknowledge the child's curiosity with something such as, "I see you looking at that person. What are you thinking?"

"I'd encourage them to talk," she says.

Over the last 20 years, society has become more inclusive, McGhie-Richmond says. Crowson agrees, finding youngsters are much more aware than when he was young.

Crowson knows his guide dog is an ice-breaker when out in the community. Perhaps too much of one, as kids are always asking to pat the dog when it's on the job. He's not always as stringent as some are about keeping kids away from their guide dogs. It depends on the situation, he says.

Parents can help broaden a child's perception by the way they respond to those with differences. Something as simple as offering assistance at a street corner shows the child what's acceptable. Small kids learn by example, Crowson says.


Tips for Parents When a Child Encounters Those with Differences:

- Most often your child is curious and not intentionally rude. If the latter, nip it in the bud by saying, "We don't talk to people like that."

- Use your child's reaction, whether vocal or staring, as an opportunity to talk about physical differences. Read the situation to determine if the talk should start immediately or be deferred until later.

- If the subject of your child's curiosity speaks, encourage your child to respond. Your child initially may be wary around someone with an obvious difference.

- Don't talk around or over the individual. Speak directly to the person, if possible. Encourage your child to ask any questions directly if the individual seems amenable.

- Set an example for your child by offering, for example, to assist those with challenges to cross the street.

- Explain that guide dogs are not pets. Your child must always first ask if it's OK to pat the dog. Often it isn't.

Reprinted from the Times Colonist, Victoria, July 31, 2010.

Network Brings Together Parents with Disabilities

Your husband indulges your children because his parents didn't. When you object, they run to him. What do you do? Be strict and tell him too much indulgence could cause damage?

Find a balance? Kids understand things better when both parents speak the same language. Say: "Oh, yeah, I'm the nagging witch and he's Mr. Perfect?"

There's a lot more to parenting than physical caregiving. So why does society so often do a number on parents who move or communicate or process information differently from the mainstream?

The question of how to strike a balance between the nagging witch and Mr. Perfect was part of a little "icebreaker" pop psychology at a meeting of the Parenting with a Disability Network last week. Adapted from the parenting style section of, it drew some knowing smiles.

But other questions soon sprang to the fore: How do you talk to your child's teacher? How do you educate people, such as social workers or other professionals who cling to stereotypes and prejudice? How do you make sure the school makes parent involvement accessible and inclusive? How do you discuss disability with your children, help them develop the confidence to deal with questions about why their mother or father uses a wheelchair?

There's no question that society imposes a whole layer of extra issues for parents with a disability to cope with. Like any group perceived to be different, they know they learn most from each other. Which is what it's all about at the parenting network, coordinated by the Centre For Independent Living in Toronto (CILT).

There's the physical side of things: How do you find a good obstetrician, midwife, doula? Where can you get a side-opening crib or other infant-care equipment for parents who use wheelchairs?

What about CILT's nurturing assistance project, which offers parents physical help to nurse their children, cuddle them, change diapers, give baths--all that day-to-day stuff?

But by far the biggest barriers are attitudes. Horror stories abound of mothers having their children literally snatched from their breast by social service personnel who never take the trouble to learn about support systems. The fear of unwarranted intervention always lurks in the background.

"The system labels you incompetent from the start," says Ing Wong-Ward, mother of a thriving 18-month-old daughter.

The parenting network, funded by the United Way of Greater Toronto, links parents, prospective parents, and anyone who cares passionately about making sure mothers and fathers with disabilities are treated with the respect they deserve. It offers information, peer support and advice on a wide range of resources.

"There are no stupid questions," says coordinator Nancy Barry. And it's never too early to contact the group, she adds.

Email peers @, phone 416-599-3555, ext. 227, TTY: 416-599-5077, or check

Reprinted from the Toronto Star, September 26, 2009, courtesy of Torstar Syndication Services.

Independence At An Early Age

Editor's Note: Kim Kilpatrick is a member of AEBC's Ottawa-Gatineau Chapter in Ontario. She is Coordinator of Volunteer Services for CNIB East Region.

There is nothing like the feeling of doing something for yourself for the first time. When I was seven, I got my first white cane, which was so short that it didn't fold up at all! My family was living in the United States then, and I had a great O&M (orientation and mobility) instructor, who was over six feet tall and an ex-basketball player. He taught me sighted guide techniques first, and then began showing me how to use the cane indoors, which I don't remember too much about, because I could get around inside buildings very independently caneless. But I do remember learning my way to this corner store a couple of blocks away from school. I had to learn to cross a stop street, find the door of the store, go in, listen for the cash desk, go there, and purchase something. We went through everything together, and then on a sunny morning I set out.

My mom was there too with the O&M instructor, but they were well back. I strolled up the street swinging my cane and then "clang, clang," it found a big metal garbage can. I loved the sound so I stopped still and continued to clang the cane against the garbage can. Just for fun and the sheer musicality of it! After a minute, my instructor called from behind, "Hey, Kim, quit playing music and keep walking!"

So I proceeded up the street, got to the corner, and lined myself up. I heard a car come to the intersection and stop. Parallel traffic was on my right, and the car came from the left and stopped by the crosswalk! He didn't proceed so, again, my instructor called from behind, "He's waiting for you! Wave him on." So I put my seven-year-old arm up and waved him from left to right. The poor guy didn't know what to do (many years later I heard he did a U-turn and went off up the street). Anyhow, he moved, and I was clear to cross.

I listened until all was quiet, and across I went. I did it! On reaching the up-curb, I trailed the wall of the building looking for the door. I could smell that corner store smell. I could hear the fan. And then I got soaked by the sprinkler! And since it was summer, I thought this was fun! I found the door and went in, hearing the bell ring as I entered. Then I stood still, listening for the sound of the cash register or voices.

Someone came up and grabbed my arm from behind and said, "I'll take you to the cash." I was so happy at finding the store by myself that I had no embarrassment about shrugging him off. I twisted free, smiled up at him with confidence and said, "I prefer to find it by myself. Thank you!"

And I did. I asked for a pack of Trident peppermint gum. I still remember that! I paid and then I found the door. This was just the best! Outside again, I stopped in the sun to put a piece of gum into my mouth and started back. There was nothing like that feeling! I went through the sprinklers again, crossed the street, found the wonderfully musical garbage can, and got back to the school.

I must tell you that this whole time my mom was having fits. She kept saying to the O&M instructor, "Oh, my gosh. Kim is about to hit that garbage can. She is about to hit that pole. How is she going to cross the street? Oh no, she is going to walk through the sprinkler! How is she going to find the door? How is she going to find the cash and get what she wants?" He finally turned to her and said, "This isn't really a test for Kim. It's a test for you, and you're failing it!"

I told mom that night that I was going to frame that gum wrapper because it was the first thing I ever bought all by myself! Really, there is nothing like that feeling of pride you feel when you know you are as independent as you can be! I am so grateful to my family for letting me do all that I could. Giving me a bike, teaching me to skate, ski, swim. Never putting barriers in my path. I was so lucky, although my family says I demanded these things of them! Nevertheless, the best thing we can do for others is to help them to do as much as they can for themselves.


Devastated. I hear that word a lot: "When we first discovered our son was blind we were devastated." I understand that. I've experienced it myself. But it's funny how now, over two years after the so-called devastation, it's hard to imagine that I ever felt that way. My son Ivan seems so perfect and so full of potential and possibilities.

But there certainly was a time when all I could think about were all the things Ivan would not be able to do as a blind child. He'll never blow bubbles, fly a kite or watch Sesame Street. Probably because colouring was always a favorite activity for me as a child, I kept returning to the thought that he would never colour in a colouring book. How could a blind child possibly have fun with colours?

Eventually, I realized that I was really stuck in the world of can't, so I began trying to think more positively. I started to say to myself, "Ivan can do anything he wants to do! He can colour, fly a kite, go to the movies, play sports, and whatever else he puts his mind to." This is a much better attitude, but it also has a dangerous down side that I almost got caught up in. It's hard to remember that it's possible to be too positive. Not only will Ivan definitely face limitations (as we all do), I also risked pushing him into activities just for the sake of proving that my blind child can do all that a sighted child can do. I suddenly pictured myself forcing Ivan to play soccer or colour in that colouring book just because that's what all the normal kids are doing. It made me shudder.

I didn't want to foster the attitude that Ivan can do things simply because I desperately need him to do those things. I see this with parents of blind children every day. They push their children to fit in or to participate in activities that don't interest them simply for the benefit of the parents.

I think it's very important to remember: My child will do what he wants to do because he wants to do it or because it benefits him in some way.

Now I try to be more realistic in my expectations of Ivan. With colouring, for example, I still think that this is something Ivan can do, but now I think about how we can make the activity as entertaining and beneficial for him as possible.

Activities like colouring and painting are good for Ivan because they strengthen his hands, encourage grasp, and facilitate wrist rotation. They're fun because there are more elements to colouring and painting than just the visual; crayons and paints, for example, have a distinct smell and feel.

Also, since Ivan is blind, we can experiment with different ways to make colouring and painting exciting for him. We can finger paint with pudding, then eat our art; we can draw with scented markers; we can place sandpaper under our drawing paper so that the crayon marks are raised; or we can make art with strings, buttons, curled lengths of paper, and other three- dimensional objects. Whatever we do, it will be beneficial because we will explore Ivan's other senses while encouraging him to participate in those normal childhood activities. And most importantly, it will be fun because we'll only do it if Ivan finds it enjoyable.

I do believe that Ivan can do almost anything and that nearly any activity presents some sort of learning opportunity. The only way Ivan will learn about the world is through interacting with it. Of course, Ivan may not be interested in art at all; he may be more of an action kind of guy, and that's fine, too. We won't discourage him from running or riding a bike any more than we would discourage him from playing with paints and crayons.

Remember that your child is a child first. Don't think of your child as primarily a blind or handicapped child. The disability is an integral part of who he or she is, but does not define who he or she is as a person. Some kids like to draw and others don't; some kids like to run and others don't. Let your child explore the world in his or her own unique way, encourage this exploration, but don't push him or her into activities just because it will make you feel better about the disability.

Reprinted with permission of the author from the website.

Disability Rates Worry First Nation Groups

The number of aboriginal children born with disabilities has reached crisis levels largely because the province and the federal government won't fund long-term substance abuse programs or provide proper maternal care on-reserve, First Nation groups said.

In the last two months, more than 600 Manitoba children have been taken into foster care--most of them from aboriginal communities and many of whom (have) medical disabilities that can't be treated on-reserve. There are about 7,200 children in foster care in Manitoba--85 percent are aboriginal and more than a third of children are living with a medical disability.

Trudy Lavallee, Policy Analyst for Assembly of Manitoba Chiefs, said a growing number of aboriginal children are born with severe disabilities like Fetal Alcohol Spectrum Disorder (FASD), Down syndrome, or develop complications from diabetes, like blindness. She said an increasing number of First Nations communities are struggling with substance abuse, but neither the federal government nor the province will pay for rehabilitation programs on-reserve. Lavallee said there are only two pilot rehabilitation programs on-reserve across the province, and most people wait up to a year to access addiction treatment in cities like Winnipeg.

At the same time, she said women on-reserve have no access to prenatal health care to encourage them to eat properly, exercise and stop smoking and drinking--something that can prevent many birth defects.

Lavallee said the federal government typically pulls the plug on pilot health-care projects on reserves that have been successful, and residents are told they can get medical treatment off-reserve instead. The province won't step in to pay for health-care services on-reserve since First Nations are a federal jurisdiction. Lavallee said ongoing bureaucratic disputes have resulted in more children being born with birth defects, and more parents turning over their children to foster care.

Parents with a disabled child have little choice but to forego care or send their child into foster care in cities in order to get the help they need. "Kids with special needs, these numbers are growing and we see that by the number of kids coming into care," Lavallee said. "There's a large increase in children with complex medical needs or special needs, and kids in trouble with the law."

Don Fuchs, a social work researcher at the University of Manitoba, said close to 20 percent of disabled children in foster care have FASD--a preventable disorder that causes anything from severe brain damage to behavioural problems like attention deficit disorder.

Reprinted from the Winnipeg Free Press, August 20, 2007.

There Are No Barriers to a Three-Year-Old's Curiosity Born Blind, Ethan Warren Grows, Changes and Engages The World

Editor's Note: The following article is reprinted from the Waterloo Record, April 7, 2007.

Elmira--Ethan Warren was born blind, and that has made him extraordinary in so many ways.

The three-year-old can race around on his tricycle in his family's Elmira home without ever bumping into a wall or a piece of furniture. He can walk up and down stairs without holding onto the banister, feeling for the edge of each step with his toes so he won't fall.

When his father unwraps a piece of gum, he knows by the sound. When his mother opens a tube of hand lotion, he knows by the smell. When he's in the family van, he knows if the road is curving to the left or the right.

Like many other children his age in Waterloo Region, he's beginning to learn how to read.

But while sighted three-year-olds are looking at picture books and recognizing letters as part of "pre-literacy", Ethan uses Play-Doh and marbles to develop the finger strength and touch perception he'll need for braille, the written language of raised dots used by visually impaired readers.

When a teacher from the W. Ross Macdonald School for the Blind in Brantford makes her regular visit to Ethan's home once every two weeks, Ethan rolls Play Dough into a ball and presses marbles into it.

"We're making applesauce," he says playfully.

Teacher Jocelyn Cook has him search for the embedded marbles with his fingertips and count them. Then she buries one in the soft yellow dough and has Ethan find it.

It feels like a game to Ethan, but it also helps develop the fingertip strength and sensitivity he'll need for braille.

Then there are other activities that any preschooler would enjoy, like pushing large beads onto a stiff string, or imaginary play with a plastic cup and spoon.

Ethan sits on the floor and stirs with the spoon inside the cup, pretending to make hot chocolate.

He tastes the make-believe brew. "We need some chocolate chips to make it good!" he declares, drumming his heels on the carpet in excitement.

Like many three-year-olds, Ethan has sailed out of that awkward toddler age, when most children become easily overwhelmed and frustrated by life, and don't have the words to express themselves.

Now, language starts spilling out, allowing easy communication of wishes, questions, fears and feelings to the adult world. Now, children are developing curiosity about the world around them, sympathy for others, even a conscience.

"A young child does not emerge from your toddler on a given date or birthday," says child-rearing expert Penelope Leach in her well-known book, Your Baby and Child: From Birth to Age Five.

"She becomes a child when she ceases to be a wayward, confusing, unpredictable and often balky person-in-the-making, and becomes someone who is comparatively cooperative, eager and easy to please at least 60 percent of the time.

"Children change and grow up gradually. They do not transform themselves overnight, turning from caterpillars to butterflies under our eyes, but this particular change from toddler to child, whether it takes place at two and a half or four, does have something of that sudden and magical quality.

"Looked at factually, the developments that take place in your child's third year will probably not be as great as the changes of the second, but they seem tremendous because they make her so much easier to live with and to love.

"It is as if by making it safely through infancy and toddlerhood, your child has, in some almost mystical way, got there."

Ethan is still working on some basic skills, like toilet training, but he is a master of words. Most children at their third birthday are expected to speak in two-to five-word sentences such as, "I go home now." But here's how Ethan tells a story about a lawn mower that was resting in the shed all winter and is being made ready for spring.

"I think he (Grandpa) drove it out and he checked the oil, and he put some new oil in it, and cleaned it all up, and cleared the grass (off the blades), and he cleaned it all up, and he got it ready for the spring. It goes Br-r-r-r."

His long concentration span and thirsty curiosity mean he'll likely have an intellectually rewarding life. It's usually around the age of six that visually impaired children learn to read braille. But "with Ethan, I won't be surprised if it's earlier," said Cook.

To help him along, Ethan's parents, Jeremy, 29, and Leanne, 26, recently purchased a "brailler," a sort of typewriter that imprints braille words on paper. Ethan uses it sometimes, and there are already braille sentences pasted into some of his books, as a translation of the printed letters he can't read.

"He needs to have braille in his environment," Leanne said, just as sighted children need to look through picture books with simple sentences inside, before they learn to read for themselves.

When Ethan was born at Grand River Hospital in Kitchener, his father worried that something wasn't right, because Ethan wasn't opening his eyes or looking around, the way other newborns did.

Within a few days, he was seen by an ophthalmologist in Hamilton. She explained that Ethan had a congenital coloboma, and a significant portion of his retina was missing. He had very bad vision, with only a small part of one eye that could see brightly lit colours or sharp contrasts between light and dark.

Perfect vision is described as 20/20 and legal blindness is 20/200. Ethan had 20/800 vision, far below the boundary of legally blind. There was no treatment possible.

"She said, 'We cannot do anything,' and she left the room, and we sat in her room. It was shocking," Leanne recalled.

She and her husband found strength in each other, in their family and friends, and most of all in God.

They carried on, determined to do what they could. They worked hard at helping Ethan learn physical skills that are difficult without sight, like rolling over and walking.

They had another child, Connor, now one year old and sighted, and another baby is on the way. Leanne plans to home-school her children.

Meanwhile, Ethan makes the most of the small bit of vision he has. He can detect a full moon in the night sky. At night, he can tell when traffic lights have changed colour.

When his parents play DVDs or videos for him, he can see movement and shapes if he peers closely at the screen. He knows his colours, thanks to transparent sheets of plastic that glow green, yellow, blue or red when laid on top of a brightly lit tabletop surface called a "light table."

Recently, he got a small cane and is learning to walk with it.

His parents, who are of Mennonite background and attend Moorefield Christian Fellowship, know that there's still a rich world of opportunity for him, despite his blindness. They wonder if, with his gift for language, he might become a preacher.

"The Christian world view we embrace is, there is a God, and everything is orchestrated by His divine plan," said Jeremy. "Children are not an accident, they are a gift from God.

"God has a plan for our lives, and God has a reason for him to have this condition."

High Praise For Disability-Inclusive Early Childhood Campaign in Maldives

Editor's Note: The following article is reprinted from Disability World, Issue No. 26, December 2004-February 2005.

The Maldives is a tiny country in terms of population. Approximately 300,000 people live in 199 of 1200 islands over 90,000 square kilometres. In the recent tsunami disaster, one third of the country's people were directly affected. Homes, schools, livelihood, access to clean drinking water, basic health services have been destroyed or damaged in some way. The tourism sector has been crushed and will take years and years to repair. And because the maximum level of any island is eight feet above sea level, the entire country remains vulnerable.

"First Steps" Early Childhood Public Education Campaign All of this is only one reason why the "First Steps" Early Childhood campaign stands out as so remarkable. A few years back, in 2001-2002, the campaign made an impact on the lives of disabled children--and all children. For 52 weeks, everyday, three times a day on radio and television, a message about infants and young children ran through the hearts and minds of every Maldivian. Each week there was a different message with local Maldivian children and families as "actors". Topics ranged from breastfeeding to learning through play to keeping dangerous medicines out of reach of young children. Nothing like this had ever happened in the Maldives, or many other countries, before ... or since.

Ms. Rina Gill, then the Assistant Representative of the UNICEF (United Nations Children's Fund) Office in the Maldives, has always been a pioneer in "thinking outside the box" in terms of both management and communications. She led the team (to which I was a consultant) to develop a communication strategy and campaign that included various ministries and media.

Skepticism at Outset An evaluation was conducted of the campaign in 2004 and the team was honest in saying that, at the onset, they were "skeptical". They stated that "social marketing, like commercial marketing, is known to work best when selling one main idea ... persistently over a period of time. First Steps' premise seemed flawed by dealing with too many messages ... stretched over nearly a year."

Yet, in the end, the evaluators called it "A Giant Leap for Humankind" because it did upset these same marketing theories. The analysis did confirm that, even two years after the "campaign", changes in attitude and behaviour could be directly linked to this campaign. The evaluators said that the communications campaign not only "touched people's lives in the Maldives as nothing had done before" but it brought about a "paradigm shift with regard to increased sensitivity and awareness of children's development and childcare practices".

Significant Finding: Frequency of Disability Topics One of the most significant findings of the evaluation is the number of times the TV and radio spots on the topic of disability were mentioned. They state that "high recall spots include children with Down Syndrome being treated "normally" and that many people discussed "opportunities for children with disabilities." Even more surprising were the apparent fundamentally behavioural changes in what the evaluators called the "difficult areas like interacting and caring for children with special needs".

Disability-Related Findings

The evaluators specifically emphasized:

"In a significant achievement, the campaign created awareness for children with special needs. The focus on children with Down Syndrome helped many (disabled) children and their families. Social acceptance of mentally and physically challenged children improved and even child-to-child interactions became increasingly positive following the campaign. Parents with mentally challenged children felt they needed more specialized help in dealing with their children. Special children must be included in play like other children, and schools should be sensitized in dealing with them."

It is important to point out that the disability focus was only one small part of the campaign. Several spots focused on disability--early detection, inclusion, the fact that a child who is disabled can be a joy to a family, etc. But the majority did not. The spots that did, however, were positive and powerful.

Campaign Offsets Previous Invisibility of Disabled Children

And, previously, disabled children and adults were nearly invisible in the Maldives.

Here is a sample of the "disability-flavour" of the campaign:

Aiman was a bubbling four-year-old with Down Syndrome. He and his mother, Haamida, who was pregnant at the time, participated in a TV spot, along with several of Aiman's cousins. Both of Aiman's parents agreed that it was useful to highlight how much they loved their son to other families.

We see Haamida and Aiman play hide-and-seek around large trees. Then Aiman and his cousins run around in the sand and play with a ball. Haamida, through a voice-over, talks about her son with so much love in her voice and tells how his cousins are always asking for her to bring him to their home. She says that Aiman brings joy to their family just like any other child. He is, indeed, the star of this TV spot.

A new mother is shown simple ways to test if her baby can see and hear. She is also told that, even if her child has any problem, she should treat her child as she would any other child.

A young girl with cerebral palsy is telling a story to her mother and father on a radio spot. The girl is delightful and keeps on giggling--much to the delight of her parents.

A group of older children use a huge parachute to play a game with younger brothers and sisters. Some of the children are disabled. Some are not.

A book is written about how older brothers and sisters can help their younger brothers and sisters learn through play. Two of the featured older siblings are disabled. One is an adolescent brother who has Down Syndrome. Another is a teenage sister who is blind.

First Indigenous Children's Books Inclusive of Disability Prior to producing the campaign spots, a series of books for children were produced. Never before was there an indigenous book about a disabled child.

It was quite difficult to find a family who would agree to have their child photographed for this project. One family, Yaish's family (seen in these photos) agreed.

They said that, prior to this book, people in the street would either ignore them or say very cruel things to Yaish and his parents. But after the book was published, and even more so after the TV and radio spots were broadcast--Yaish was a celebrity.

As in every country, it took courage for Yaish's family to say yes. It took courage for the Early Childhood team members to find the little girl whose speech was poor and use her on a radio spot. It took courage for every "first" family who agreed to open their lives to everyone in their country. It took courage for Ms. Gill and the UNICEF team to pioneer a campaign that was "outside the traditional box" in terms of development and social communications.

But it made a difference. A big difference.

Reaching For The Stars

Editor's Note: This article is reprinted from Future Reflections, Vol. 23, No. 2, Special Issue 2004, the Early Years.

Fifteen years ago on a warm June morning my husband, Bob, and I drove to the hospital for our appointment with destiny. Because of delivery problems with our first child, we had the luxury of being able to choose the day and time of our second child's surgical delivery. Later that morning, we were overjoyed to welcome a baby girl into our family--finally, a girl where for generations (on my husband's side) there had only been boys! She was a perfect baby--healthy, dark hair, big blue eyes, and a pretty little face. We couldn't have been happier! Little did we know that this tiny, innocent babe in arms would turn our world on its ear.

Our new daughter, Lauren, thrived in her first few months at home. She was begrudgingly accepted by her two-year-old brother, Mark, and gradually our family life fell into a happy new routine. But as she grew, some little concerns tickled the backs of our minds. She squinted when she was out in the sunlight--typical of newborns we were told. She didn't smile when someone came to her crib, but she would smile when held or spoken to. Finally, a jerky eye movement that we assumed would pass with her infancy became more and more obvious. Then came that fateful day when the doctors' tests concluded that our daughter's retinas were not functioning properly. She would have visual impairment, but no one knew to what extent. She might even be able to drive, we were told.

Of course we were optimistic and clung to the best-case scenario--that the condition wouldn't worsen, that she would be mildly visually impaired, but not (God forbid) blind. As the months passed, it became obvious that this was not a stable condition. Her visual acuity was gradually fading. We mourned for every lost dream. We felt guilty that we had unknowingly passed on what we were told was a recessive genetic defect. We felt depressed about the future. But it's no fun living in depression, so something had to give! That something was our first change in attitude about blindness. This was our child! She was bright and charming, and we vowed that vision or lack of it would not define her life. We didn't want to hear any more sympathetic words from well-meaning neighbours and friends. Give up your dreams? Not on your life!

And so we were inaugurated into a whole new world--a world which has caused us to re-examine our values and broaden our horizon--a world which has brought us support, friendship, and a cause we believe in. Who would have thought that such a tiny baby born on a warm June morning would be responsible for all of that? At what point do we move from seeing the glass as half-empty to seeing it as half-full? For us it came gradually as we learned, through the National Federation of the Blind, that the possibility was there that our dreams for Lauren could be fulfilled. That foundation was in place for us when we sustained our second blow--discovering that Lauren also has a progressive hearing loss. As with the vision loss, which is now total, the hearing loss has been gradual.

Lauren is now fifteen years old. She got her first set of hearing aids when she was eight. Her hearing loss has progressed from mild to moderate, and now hovers on the line between moderate and severe. Again, doctors are no help to us. They don't know why and can't predict what the future holds in store. We just live our lives and take what comes.

But one thing we have learned over the years is that fear about the future results from ignorance and failing to take control. If you do all you can to learn about your nemesis, never lose sight of your goal (which in our case is to achieve maximum independence), and stay in charge of your destiny, then the future is not so frightening. In relation to the deafness, we are still in the process of learning. The more we learn, the less scary the future seems.

As we meet and talk to other parents with deaf-blind children and with deaf-blind adults, we are reassured that there can be a quality life for an individual who is blind and deaf. Our job is to make sure that Lauren has the adaptive skills necessary to remain an interactive member of society. There is work to do, but I feel confident that my daughter will achieve her potential and no matter what the future brings, we will never stop reaching for the stars.

Let Your Child Play With The Pots and Pans!

Editor's Note: This article is reprinted from Future Reflections, Special Issue 2004, Vol. 23, No. 2, the Early Years:

Bringing the world to my two-year-old son (who happens to be blind) seems like an overwhelming job and I used to feel very guilty for not sitting down and working with him the way his teachers did at school. Then Tyler showed me how he could practice these skills at home with "house stuff."

Here is an example. I had read in many general articles about children (and remembered that this was true with my other children) how children love pots and pans. Little did I know what a gold mine of education we had in one little cupboard.

Orientation and Mobility/Finding the Cupboard: Since Tyler enjoyed making "music" with the pots and pans, it was a built-in reinforcer for him to find the cupboard, cruise past the stove, etc. He cruised back and forth for many weeks on that side of the kitchen finding landmarks and feeling very proud of himself.

Sound Localization: It didn't take him long before he was throwing a pan across the floor and crawling or scooting after it.

Object Permanence: Now this made sense! Open the door and they are always there.

Fine Motor Skills: Learning how to open the door was a task that took time and concentration. We also talked about the front of the door, the back and inside of the cupboard, etc. It was a great opportunity to talk about these concepts. The fine motor skills were tested whenever he tried to pick up an upside-down cake pan (try it once).

Gross Motor Skills: Cruising to cupboard then walking across the kitchen freestyle (very scary for mom). He also walks around with a pan or two and practices sitting on the bigger ones (or in them).

Discrimination: There are always big pans, little pans, heavy pans, LOUD noises, soft noises, and so forth.

Self-Help Skills: Throw in some spoons and cups for an added surprise. Here again, more concept building, such as big and little, etc.

Language and Communication: With practice you will start describing your child's actions while he is on the go. "Open the door." "That's a heavy pan!" "Go get the pan." "Sit down," and "Stand up."

If you don't want your good pans thrown across the floor, go to an auction or second-hand store and buy a boxful of metal ware. And if you think the noise will drive you nuts, you'll get used to it. The satisfaction and education your child is getting is well worth it. And just think of all the education he is receiving while you're washing dishes.

Other suggestions (Our O&M specialist gave me these suggestions.)

When your child is learning where the stairs are, put the safety gate on the second or third step-up or -down. This will give him the independence to investigate without falling all the way down.

Have a special activity that your child likes in each room of the house to encourage room-to-room travel. For example, an organ or keyboard in one room--you can turn on the demonstration tune to give him a continuous sound cue to find.

An old coffee pot full of cookie cutters and wooden spoons encourages movement to a hard-to-reach spot like around the table. A drawer full of brushes and combs in the bathroom is a favourite spot, and a sit-and-spin toy provides an excellent sound cue for fun.

Tyler finds these favourite spots easily now by himself, but it took many months of showing him how to get there, and lots of practice to get to this point. As he gets older, he will get bored with these and challenge us to show him new things.

Going to new and noisy places is always a challenge for all of us. All that I can say is talk, talk, talk about the sounds and LET HIM LISTEN.

I always want the public to see what a normal active child he is, but I've learned that a good long while in mom's arms listening will put the sounds and feelings in perspective for him, and then--when he is ready--he will get down and investigate.

When introducing a new experience (like swimming in a small pool), you may have to work up to the complete "normal" experience. We did this by letting Tyler sit in a separate pool, first on a chair with just his feet in the water, and bit by bit, working up to swimming by himself. It was only about a week before he was swimming in the pool with the others and having a great time.

The Right Way to Play

Editor's Note: This article is reprinted from The Hadley Connection, the student newsletter of the Hadley School for the Blind, Fall 2003.

What is the best toy for your visually impaired child? Which one will he or she enjoy the most? There are many factors to consider when making that decision. Consider the following questions before making your purchase:

  • Is the toy appropriate for your child developmentally?

  • Is the toy safe, durable and without small, loose parts?

  • Can the toy be used as the child gets older?

  • Is the toy visually appealing to the child with low vision?

  • Does the toy have a pleasing scent?

  • Will your child be able to operate the toy?

  • Does the toy have tactile appeal?

  • Is the toy versatile?

  • Will your child interact with the toy?

  • Does the toy have a cause-and-effect quality, such as a puzzle?

  • Does the toy make noise, and can the volume be adjusted?

  • Is the toy washable?

  • Is the toy child-size?

  • Is the toy fun to use?

Once the boxes have been opened, take time to explore each new toy. Visually impaired children may be reluctant to try new experiences, so take things slowly. Enthusiastically play with the new toy yourself as you describe what it looks like and how it works. Encourage hand-over-hand placement as you help your child manipulate the toy. Introduce just one or two toys at each play session, so as not to overwhelm your child.

Schedule a specific time for play. Remember the importance of setting aside time for play in your child's daily schedule. Planning a specific time for play, such as first thing in the morning or after naps, works well for some families. Keep in mind when your child is at his best and most alert. Children thrive on routine; thus, have the same beginning and end to each play session. Include others, such as siblings, peers and other family members, in your play. Play only as long as your child is interested; learn to read his cues as to when he no longer wants to play.

Other families find the best way to play is to build play experiences into their daily routines. Sing songs and play games while in the car. Bring along toys, games and books as you wait for a doctor's appointment. Keep a low kitchen cabinet filled with plastic pots and wooden spoons, so your child can play in the kitchen as you prepare meals. Make bath-time fun by singing songs and playing with water toys. If you take advantage of the moment, you will find countless opportunities throughout each day for play and fun.

Try to find the best place for play in your home. Some find the family room, child's bedroom or even the kitchen work well. Make sure the space is large enough for your child to move about freely and for you and your child to sit comfortably. Find a place where toys can be kept organized, such as on shelves or in baskets. Try to limit distractions such as the telephone or television. Make sure the area is safe. Choose lighting that is appropriate to your child's needs. Locate the area where your child can be near to you. The older child plays more independently, but often wants to be within calling distance of Mom and Dad.

Play will help your child grow and develop. Through play, your child will learn about his environment; he will feel loved and cherished. He will develop fine and gross motor skills, motivation, curiosity and self-esteem. Learning through play is the foundation for future learning. Thus, make time for play and enjoy your child.

This sidebar features a list of toy companies and catalogues for children with special needs.

Abilitations (800-850-8603);

Crestwood Communications Aids, Inc. (414-352-5678);

The Dragonfly Toy Co., Inc. (800-308-2208);

Enabling Devices, a division of Toys for Special Children, Inc. (800-832-8697);

Environments Inc. (800-342-4453);

Exceptional Teaching Aids, Inc. (800-549-6999);

Guide to Toys for Children who are Blind or Visually Impaired (212-675-1141);

Music for Little People (800-346-4445);

Hitech (for the hearing impaired) (800-288-8303); (no link)

TFH (USA) LTD. (800-467-6222);

Toys "R" Us Guide for Differently Abled Kids (800-869-7787); --- connects to general store information


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