Conall's Cleft Lip and Palate

Conall, our youngest son, was born October 31, 2002 with a wide unilateral cleft lip and palate. Conall weighed 10lbs, 10oz! Not such a little guy! Over his lifetime, he will have several procedures and surgeries to bring the separated parts of his mouth together. We're using the blog as a place to share our experience with others who are seeking information and, perhaps, some reassurance.

August 04, 2009

Why do you have a scar?

We were visiting some friends on their houseboat this weekend when I overheard their daughter ask Conall "Why do you have a scar?"

It took a lot of effort not to answer the question for him, but I managed. Turns out 6 year old Conall doesn't need my help - he did just fine on his own. He simply explained that he was born with a cleft lip and palate and that the scar is a result of one of his surgeries. I felt a mixture of joy and loss. The joy is for him being so matter-of-fact and mature. The loss was for me... that my role of the educator and protector may be coming to an end. It also got me thinking about how this is a relatively rare question from his peers and that some may not be as kind as our friend's daughter. One day at a time...


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November 01, 2008

Another Round of Ear Tubes


Once again, Conall is as brave as can be during a hospital procedure. After waiting almost 6 months to get a new set of ear tubes, Conall's surgery date finally arrived on October 27th.

Conall has had more sets of ear tubes than I've been able to keep count. Children born with cleft palates almost always have ear passages that don't drain properly. As a result, they can experience more than their fair share of ear infections and other complications. We've been pretty lucky so far with tubes falling out without much ado but this time was a bit different. Conall had been complaining about ear pain and our cleft team in Toronto suggested some tests. It turned out Conall was experiencing some hearing loss in one ear from a tube that had tried (unsuccessfully) to make its way out of his ear canal. His pain was related to noise and it is quite difficult to keep the noise down for a 5 year old in a grade 1 class though the day and two brothers the rest of the time! It was a tough 6 months waiting for the surgery, but he came through with flying colors!


Here is Conall at the Alberta Children's Hospital being prepared for the short surgery.













He thinks he's in heaven when they give him his "own" DVD player to watch while he waits to go in to surgery.

When they do call him down, Conall skips to the operating room - the hospital staff are always surprised at how relaxed Conall is, but I expect it now; we have worked very hard over the years to make his hospital experiences positive. I asked the anesthetist if I could come in for Conall's induction and he gave me the "OK". It is always up to them but I haven't been turned down yet! It is difficult to watch him as the gas begins to take affect - he struggles against it, but soon enough his is asleep and I can make my way back to the waiting room.


Here is Conall and his popsicle right after the surgery - it went really well and Dr. Drummond expects the pain will have gone away for Conall. We will follow up in 5 weeks with him.




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March 30, 2008



The great thing about the periods between surgeries is that you can pretend, for a while, that your child doesn't have anything out of the ordinary to deal with. Conall is 5 years old right now and that means we have 5-7 years to go before his bone graft where bone is taken from his hip and transplanted to the roof of his mouth. Luckily, Conall doesn't have any speech problems, so the only time I have to confront the reality of his cleft is the yearly trip to meet the cleft team. We're booked in a few weeks. All the emotions are rushing back and I'm starting to feel badly for Conall (and myself).
Here is a recent picture of Conall on the beach in Dominican Republic. He is so beautiful and joyful! I'm so glad he's part of my life. Even if it means feeling sorry every once in a while, I wouldn't change a thing.



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January 08, 2007

The Beginning of Conall's Journey

Conall's cleft was noticed in a routine ultrasound at 22 weeks. We were told he had a unilateral (one side) cleft lip and possibly palate. Conall kept his cleft palate a secret up until his birthday!

Conall's ultrasound

Conall shortly after birth










Below is an Excerpt from our "birth plan" for Conall:


"It is very important that the baby’s cleft is not the center of the birth. We are not suggesting it is ignored, because we are very interested in seeing it – just that it not be made to be more than it is (assuming baby is healthy in every other way)."
Conall comes home 5 hours after he is born. He meets his brothers for the first time - they waited up for him!





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January 07, 2007

Feeding Conall

Feeding a baby born with a cleft can be a real challenge. Breastfeeding is usually not possible since baby lacks the mechanism required to suck. Conall drank expressed breastmilk exclusively for most of his first year. We fed him with special bottles designed for babies with cleft.

Conall's first food was breastmilk. Patti expressed colustrum for a few days before Conall was born and fed it to him using a Haberman feeder.







The Haberman feeder is specially designed to allow a baby to "bite" on the nipple to recieve milk. Later we switched to a pigeon bottle (similar concept but smaller nipple)


Not An Easy Task...
Expressing breastmilk for Conall was one of the most difficult things I have ever done. It required serious dedication and determination. Feeding Conall was like feeding twins; first I would have to pump (baby 1) and then I would feed Conall (baby 2). It was never easy, but it was worth it.

After palate surgery, Conall was able to suck and could use a regular bottle/nipple.








I am grateful for the support of the following groups/people:

Finally, here's the letter I wrote when I stopped pumping milk.



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The End of Pumping Milk for Conall

Thank you for indulging me, I've been dreaming of the day I would post a message saying I was "hanging up the horns" and here it is...

Today I am pumping the last drops of milk and bidding adieu to one of the most incredible and most difficult things I have ever done in my life. My son was born with a cleft lip and palate and I decided he would receive breastmilk exclusively for a year which would see him through two surgeries. I pumped for 11 months and have enough frozen to see him through his 12th month.

I have one bit of advice for those of you just beginning to pump - EXPECT IT TO BE DIFFICULT. I know that doesn't sound fun, but it is the only way to stay sane. If you expect it to be simple and problem-free, you will quit when it gets rough. It is certainly easier at 11 months than 2 months, but there are different problems as you do it longer (e.g. supply).

I've pumped every 2 hours for my son when he was small, I've pumped in moving cars & planes, airports, and hospitals. I've shed many tears over painful nipples, low supply, lack of sleep, and emotional exhaustion. I've taken medication to increase supply. I've pumped with 3 children under the age of 5 and with my husband away on business trips. I've had plugged ducts and thrush. And through it all I've had to deal with countless doctors' appointments and medical treatments for my son's cleft palate.

What an accomplishment! I feel so proud of what I've done. Rest assured you will make it to your goals. If I can do it, you sure can!

So, I finally have come to an end I never believed I'd see. I can stop saying "Mommy can't, because she has to pump" or "I have to get home so I can pump". I can return this rental pump (I wish I could run it over with my car) and celebrate. What, you ask, will I do to celebrate? GO TO BED EARLY for the first time in almost a year!

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January 06, 2007

Conall's First 4 Months

This provides a synopsis of Conall's first 4 months.

Conall's cleft was treated with a Nasal Alveolar Molding device (NAM) for the months before surgery. Each week for 4 months, we traveled 4 hours by car from Ottawa to The Hospital For Sick Children (Sick Kids) in Toronto for Conall's care.

November 13, 2002 - Sick Kids Toronto. Conall's orthodontist, Dr. Bruno Vendittelli, took an impression of Conall's mouth in order to fit him with a plate which would begin the process of bringing the parts of his lip/palate together. This relatively new technique was started at NYU Medical Center; Dr. Vendittelli studied with the team there. We headed back to Toronto November 20th to have the plate inserted. We would return to Toronto every 2 weeks to have the plate re-fitted.

November 14, 2002 - Sick Kids Toronto. Dr. David Fisher, Conall's plastic surgeon, met us for the first time. He expected Conall to wear his mouth plate for approximately 4 months before he would be ready for his first surgery (lip repair).

November 20, 2002 - Sick Kids Toronto. Conall's orthodontist fit his new plate into his mouth. Conall slept through the entire fitting and only woke when he got hungry near the end. The plate is held in place by elastics and tape on his cheeks. These tapes also provided the resistance to create movement in his mouth. Dr. Vendittelli expected to create a 4mm space where there was currently 10mm.

Conall back at home after getting his new mouth plate. He doesn't like the feeling and has been fussing quite a bit - his doctor expects this to only last a few days to a week at which point Conall should be quite used to it.



November 27, 2002 - Sick Kids Toronto. The plate is working well! Dr. Vendittelli was amazed at the results of only one week. Conall was still obviously uncomfortable.

December 18 , 2002 - Sick Kids Toronto. Dr. Vendittelli added a nasal extension to Conall's mouth plate. The intent was to shape Conall's nose at the same time as the palate. Once again, Conall took everything in stride. He was uncomfortable for a few hours and then seemed not to notice. Conall's surgery date (for the lip closure) was discussed for late February.

Conall with his new nose ring.










Here are close-ups of the device.










When Conall was born, his cleft measured approximately 10mm











After 5 weeks of wearing his mouth plate & tapes, his gums were almost touching










Conall kept knocking his plate out of his mouth so he wore restraints some of the day. We couldn't afford to lose the progress he'd made. These are the same restraints he used for the weeks after his surgery. Poor guy!




January 3, 2003
- Toronto. Dr. Vendittelli saw Conall in his private office. Conall had "graduated" to one visit every two weeks until surgery (February 26). The plate & nose extension had done great work and now we just had to maintain the shape until the plastic surgeon did his work.


Dr. Vendittelli checking Conall's mouth plate. What a little guy laying on the dentist's chair!









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January 05, 2007

Pre-surgery Photo Shoot

Here are some photos of Conall and Mom just prior to his lip repair surgery. Aside from seeing what a happy little guy he is, you can also see how his alveolar ridge (gum line) is virtually touching after having used the nasal alveolar molding (NAM) device.

Much thanks go to Trevor Lush, a very talented photographer in Ottawa, for capturing such beautiful shots. Sick Kids Hospital's cleft team decided to use one of them on their website and information brochures -- with Trevor's permission, of course. Conall, you're famous dude! ;)



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January 04, 2007

Lip Surgery - February 2003

February 26, 2003 - 8:30am Sick Kids Toronto. Mommy takes Conall to check in for his lip/nose repair surgery. Conall had his last bottle of breast milk 4 hours ago. There are so many new people and things to see that he doesn't even notice he's hungry!

Check-in












Alison, the cleft nurse, weighs and measures Conall before surgery. He doesn't seem to mind!






10:30 am - Conall's anesthetist and surgeon meet with Mommy and Daddy to describe the procedure. Conall will be under general anesthetic for the surgery which should last 3 hours.

Here is the last wide smile we will ever see!

A nurse takes Conall to the operating room.










2:00 pm - Waiting for 3 hours wasn't as difficult as we had thought it would be. Our friend Jane who works at the hospital was a great help and stayed with us the entire time. Finally, Dr. Fisher (plastic surgeon) came into the waiting room to inform us that the surgery was a great success. A half hour later, we go in to see Conall in the recovery room. We may only stay long enough to take a few pictures.

Nothing can prepare you for the first time you see your baby in a recovery room. He looked so helpless. We were very moved by the change in his face. It was easy to see right away that Dr. Fisher had done an amazing job.



3:30 pm - Conall is wheeled up to his room. By this time, there is some bleeding around his mouth and he looks pretty beat up. He will have morphine for the next 24 hours.

Conall wakes in obvious discomfort every so often - Niall finds laying a hand on his chest calms him.

Conall takes his first bottle of breast milk 3 hours post-surgery. He manages six ounces! This is a very good sign.









8:00 pm - It is a bit difficult to get Conall out of bed with his IV, but he seems to really like the rocking chair.











Day 2 - The nurses remove Conall's IV because he is eating so well. We are also told he may go home today. He is looking much better after a good rest. His nose is still a bit misshapen from the surgery, but we are told it will "relax" into shape. His skin is shiny from cream to help where the tapes had been for his mouthpiece. He is discharged later that day



Day 3 - Back at Jane's house in Toronto. Conall is taking tylenol and codeine now, but he seems very happy.










Day 4 - Three days after surgery Conall is looking amazing! He will have his stitches out in 5 days...









What an incredible transformation! Here is Conall over the 4 months of his life:














Day 7- Conall returns to the hospital for his stitches to be removed. Once again, he has to be under anesthetic but only for half an hour. The doctor inserts a "nasal splint" into Conall's nose which is held in place by tapes. The splint will help his nose keep it's shape and should be worn between 3 months and one year*.
* Note: we chose to discontinue the use of Conall's nasal stent after he wore it for just over one month - his skin had had enough of the tape!














Day 35 - Conall's follow-up appointment is held outside the hospital in our Van! All appointments were cancelled in the hospital due to the pneumonia illness (SARS) spreading around the world. Dr. Fisher (with Conall in the car seat) says Conall is doing great and teaches us how to massage the scar.



Conall's palate surgery is scheduled for the following fall.






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January 03, 2007

Palate Surgery - September 2003

September 12, 2003 - 12:30 pm. Sick Kids Toronto. Mommy takes Conall to check in for his palate repair surgery. Conall had his last bottle of breast milk 4 hours ago & 4 oz of apple juice moments ago. If he is hungry, he isn't letting us know!!

Check-in
Alison, the cleft nurse, gets Conall ready for surgery. Nice gown!







2:15 pm - Conall's anesthetist and surgeon meet with Mommy and Daddy to describe the procedure. Conall will be under general anesthetic for the surgery which should last 3-4 hours. During that time, the doctors will insert ear tubes as well as repair his palate.

Dr. Fisher (Conall's plastic surgeon) poses with Conall before his surgery

A nurse takes Conall to the operating room






5:00 pm - Dr. Fisher comes into the waiting room to inform us that the surgery was a great success. The doctor who inserted the tubes in Conall's ears also lets us know that it went well. A half hour later, we go in to see Conall in the recovery room. We may stay long enough only to take a few pictures.

Conall looks really good after his surgery. Saliva mixing with the blood makes it look like more than it really is. The nurses have placed him on his tummy to help with the drainage.



7:00 PM - Conall is wheeled up to the Critical Care Unit where he will spend the night. The nurses have fashioned a tent to go over Conall to keep the air around him moist. We may visit him for as long as we wish, but he will be sleeping most of the time as the anesthetic wears off and the Morphine takes affect.












Day 2 - By morning Conall is up & alert, but swollen.. He took some water during the night much to the surprise of the nurse! He doesn't know what to do with his tongue, so he sticks it out.














Conall enjoys going for walks around the hospital. He is very sleepy and is still on Morphine. He is now drinking a bit of breastmilk from a soft-sip feeder. There is discussion of going home tomorrow.



We are beginning to see a bit of the old Conall back!











Day 16 - Conall wears arm-restraints for the 3 weeks after his surgery. We must be careful not to permit him to damage the new palate. He doesn't seem to mind too much!














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January 02, 2007

One Year Post-palate Surgery

Here are some shots from a photo shoot in Feb. 2004 that show both what a happy guy Conall is, and the results of the excellent care the cleft team at Sick Kids Hospital gave to Conall. He was just over 2 years old in these photos.



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January 01, 2007

Conall - Christmas 2006

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Why our kids watch very little television

A summary of Jane Healy's theory - why TV and kids don't mix (article published by the Rush Neurobehavioral Center)...

"May I have your attention?" — With that request made daily in thousands of classrooms across the country, teachers make an interesting assumption: Attention must be given from within the child. The ability to mentally focus, attend, and sustain concentration over a period of time is an internal process developed in early childhood.

All the right ingredients in the external world will ensure that development. The wrong ingredients will hinder it. Can today's children growing up bombarded by fast-paced visual media be receiving the wrong ingredients? Can U.S. children who watch an average of 4 hours of television daily get enough of the right ingredients? Over the past ten years I have scoured dusty library shelves at universities to find information on what I consider an obvious link to the growing numbers of children who have trouble paying attention.

In her now classic contribution to understanding media's impact on brain development, Dr. Jane Healy states in Endangered Minds:

"A 'good' brain for learning develops strong and widespread neural highways that can quickly and efficiently assign different aspects of a task to the most efficient system...Such efficiency is developed only by active practice in thinking and learning which, in turn, builds increasingly stronger connections. A growing suspicion among brain researchers is that excessive television viewing may affect the development of these kinds of connections. It may also induce habits of using the wrong systems for various types of learning." (Healy, p. 183)

A mature attention span comes with a mature brain. As children develop "those widespread neural highways" Healy refers to, they also develop control and focus of higher level cortical function...namely an attention span. Yet, with the continuing over-diagnosis and mis-diagnosis of ADD, it seems as if an attention span were some magical treasure only to mature in a select few, instead of a normal, natural process for all. Recent research at the National Institute of Mental Health conducted by Peter Jensen concluded, "Extensive exposure to television and video games may promote development of brain systems that scan and shift attention at the expense of those that focus attention." (Jensen, p. 46)

To many parents and teachers this is not a new revelation. In countless homes, child care centers, and classrooms, we see children with more impulsive behaviors, less willing and able to persevere through challenging mental tasks, hyperactive, reactive, with little or no impulse control. Research confirms that children who watch TV or play video games for more than two hours daily will most likely exhibit one or more of these characteristics.

Let's take a look at how this works inside the brain and what we can do about it. First of all, visual images must be noticed. Do an experiment. In the evening with the lights low, put your head at an angle to the television. Wait for a commercial. Then try not to look. Try as hard as you can. What you will find out is that it is virtually impossible not to look. The quick change of images on the screen activates the brain's "orienting response," discovered by Pavlov in 1927. We humans are programmed to look at abrupt changes in our visual field—even in our peripheral vision. It's part of our survival mechanism. The colorful, quick images on TV or a video game are difficult for low brain systems to resist.

Secondly, the earlier children acquire a passive TV habit, the more likely attention span will not develop normally. Young children can be entrained to keep watching TV. The faster pace of the images they are watching, the more likely they will keep watching and the more likely the child's attention span will be jerked around. The pacing of the TV program or movie determines that the child will watch one image for 3 seconds, another for seven seconds, another for five seconds, and so on. Since the images change rapidly so does the shift of the child's attention.

Dr. Jerome Singer, a distinguished researcher on children and television at Yale University states:
"...commercial television with its clever use of constantly changing short sequences, holds our attention by a sensory bombardment that maximizes orienting responses...We are constantly drawn back to the set and to processing each new sequence of information as it is presented...The set trains us to watch it." (Kubey and Csikszentmihalyi, p. 139)

Contrast this externalized control of attention with the internal control required while participating in a self-directed play activity. The child, not a scriptwriter or producer, determines how long he or she will attend to individual tasks.

And the last, important point is displacement of self-directed, challenging mental tasks ensures an undeveloped attention span. When youngsters are in self-directed activities exploring their environments, they are talking to themselves, making choices, and directing their own attention. Metacognitive abilities are blossoming along with mindfulness. But, in over 90% of American homes, the television is on for 7 hours and 44 minutes each and every day!! A major distraction from the internal landscape! As young children try to focus their budding attention on a mental challenge in the 3-D world, the 2-D world blares and beckons. It's so easy for the youngsters to continually stop what they are doing and look at the screen. A constant stream of interruptions disengages the child's inner speech during the self-directed experience. Concentration and sustained attention become more and more fragmented, eventually disappearing. Now the child is no longer constructing personal meaning internally through thinking processes and self-talk—the child's attention has been "captured" by the saliency of the external image. Internal control of the attention span diminishes as the child becomes a spectator. When this happens for hours every day throughout early childhood, the likely outcome is a rambunctious brain.

What We Can Do

1. Limit TV viewing. By age 5, youngsters in the United States have amassed at least 5,000 hours of television viewing. That's the equivalent time it takes for an adult to earn a 4-year college degree! Our youngsters and their brains need much more time doing than viewing! Practicing concentration and attention skills is best done through concrete experiences in the 3-D world. The more self-directed these activities, the more opportunities for the attention span to develop. Time spent as a spectator of the 2-D world of TV and video must be limited, ideally to 5-7 hours a week.

In their book, Television and the Quality of Life, Robert Kubey and Mihaly Csikszentmihalyi point out:

"A child who is left for hours in front of a television set with nothing else to do, a child who has never been encouraged to independently create information—who does not know how to draw, how to make music, how to pretend, or even how to read—such a child cannot be expected to turn the set off. The child is condemned to develop a viewing habit, the choices determined by the poverty of the environment." (p. 201)

Research demonstrates that the viewing habits of toddlers and preschoolers will likely become their viewing habits as adults. It is imperative to start teaching healthy TV habits early.

2. Provide mental challenges on an on-going basis. These can seem simple to adults but such parental actions as giving youngsters choices, asking them questions, providing materials for play rather than a lot of expensive toys, requires attentive concentration on their part. A puzzle instead of a video game, a trip to an art museum instead of a movie sometimes, an aquarium for the child's bedroom instead of a TV—these are gifts which will nurture the development of an appropriate attention span.

3. Don't fill children's time every minute. Being afraid of boredom won't serve our children. Boredom, or down time, is a necessary part of developing intrinsic motivation, along with deep understanding of one's own creative process. To develop the ability to concentrate, youngsters must be left alone to acquire ingenuity and inventiveness. As the poet Eve Mermaid said, "It takes a lot of slow to grow!"

4. The temptation to fill leisure moments with TV should be avoided. One great alternative is to plug youngsters into a story on audio cassette, instead. It can be as convenient as television for most parents and it is so much more effective for developing young attention spans. With the visual image, there is no need to use the imagination. Listening to the symbolic system of language in the form of a great story, however, requires attention. The youngster must conjure up internal visual images, along with sequencing them into a coherent whole, while predicting information and actively constructing meaning from what is heard. That's a lot of brain gymnastics which exercise the attention span. Reading aloud to children and talking with them often will have the same effect. In fact, when parents in my workshops ask me: "What's the one best thing I can do to help my child's attention span?" my answer is, "Make sure your child spends twice the amount of time immersed in language activities (being read to, singing, talking, etc.) than he or she spends watching TV."

5. Choose television programs and videos which have a slower pace and mimic real-world rhythms more closely. A steady diet of sensational, fast-paced images will trigger more reactions than responses and can make children at risk for learning and attention problems later. Also, refrain from purchasing any video-game system before the child is 10, if at all possible. By then, children would be much less likely to be conditioned by video games and it will be so much easier for parents to enforce time limits and game choices. Also, they won't be as easily hooked on violent games if they start later. By age 10 most children's brains will have matured enough to enjoy a good mental challenge and trigger-happy violent games will be less satisfying to them.

Our youngsters can develop the mature attention spans they need for effective thinking and problem-solving skills in today's complex world, given the time and space to do so. In a media age such as ours, I think it is important to share this message with parents and teachers we know. When a teacher says, "But the kids don't have an attention span, so I teach in 10-minute bites"...or parents assume their children can't entertain themselves without a TV on, we can point out: "The normal course of human brain development naturally leads to a well-developed attention span." Let's make sure we give our children brain-compatible activities on a regular basis, no matter how challenging that is for us. It's sure worth our effort.

References Condry, John. The Psychology of Television. Lawrence Erlbaum Associates, Inc., 1989.

Corteen R. S. "Television and Reading Skills," in Tannis Williams (ed.), The Impact of Television: A Natural Experiment Involving Three Communities, Academic Press, 1986.

DeGaetano, Gloria. Television and the Lives of Our Children, Train of Thought Publishing, 1994.

DeGaetano, Gloria and Maureen Arnold. Media Smarts for Young Folks, Train of Thought Publishing, 1997.

DeGaetano, Gloria and Kathleen Bander. Screen Smarts: A Family Guide to Media Literacy, Houghton Mifflin Company, 1996.

Emery, M. and F. Emery. "The Vacuous Vision: The TV Medium." Journal of the University Fill Association 32 (1,2), 1980.

Healy, Jane. Endangered Minds: Why Our Children Don't Think and What To Do About It. Simon and Schuster, 1991.

Hoing, Alice. "Television and Young Children." Young Children 38 (4), 1983.

Jensen, Peter. Journal of the American Academy of Child and Adolescent Psychiatry, December, 1997.
Kubey, Robert and Mihaly Csikszentmihalyi. Television and the Quality of Life: How Viewing Shapes Everyday Experience. Hillsdale, NJ: Lawrence Erlbaum Associates, 1990.


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