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In this webcast, Veronika Bernstein, Ph.D. describes the challenges faced by children with visual impairments and their families in developing good sleep habits. Dr. Bernstein provides a variety of strategies that may be used to address this challenge.
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CHAPTER 1: Good Sleep Strategies
BERNSTEIN: People with visual impairment have significantly more sleep problems as compared to general population. General population, about 40% to 60% of general population suffer from a variety of sleep related conditions. With young children, close to 90% to 100% of children with visual impairment suffer from sleep related conditions.
NARRATOR: In a video clip, a young boy who is blind stands in front of his father who sits on a couch. His father picks the boy up onto his lap and hugs his son to his chest.
BERNSTEIN: What we do to... all of us, what we do, we learn how to sleep. It's a sleep... solving sleep related problems is... are basically not different from teaching child to eat. The same way as you teach a child to eat at certain times, in a certain way, we teach children to sleep at certain times and certain ways.
BERNSTEIN: Sleep affects your health. If you have chronic sleep deprivation, you develop all kinds of immune related conditions. You might have more allergies, you have more diabetes, it affects your heart functioning, it affects a whole variety of health problems.
Mood — it really affects mood, how much time you get sleeping. Your ability to learn — your ability to learn is severely affected by the amount of sleep that you get. Your memory, your concentration, your ability to learn new information is is significantly affected.
NARRATOR: In a video clip, we see four teenagers who have varying degrees of visual impairment and two sighted teachers gathered around lab tables in a science class. The shot changes to a close-up of a 3-D cell model being examined by one of the students. Another student uses his fingers to trace a raised line drawing of a cell.
BERNSTEIN: Normal sleep consists of 90 minute, hour-and-a-half cycles. Most of it is calm sleep, four stages of calm sleep. Some short periods of the cycle is active sleep. During calm sleep, our temperature goes down, our breathing slows down, our muscles are getting rest. During short times of rapid eye movement sleep, REM sleep, all body functions are increasing. You have an increase in breathing, increase in temperatures.
NARRATOR: In a video clip, we see a young boy with short, dark hair asleep in bed. As the shot moves to a close-up of the boy's face, we can see the movement of his eyes behind his closed eyelids.
BERNSTEIN: For good sleep, we need both periods — we need times of calming down and we have times of increased brain activity. When we calm down, we... our immune system is working to protect our body. When we have REM sleep, our learning and memory and attentional abilities are getting recharged.
CHAPTER 3: Melatonin Production and Sleep Patterns
BERNSTEIN: As we grow up, sleep patterns change. Sleep patterns depend on the level of melatonin that is produced by a little thing between our eyes — pineal gland; right there. Melatonin production starts at about three to four months of age for the first time.
Before that, sleep patterns are maintained purely by the cycle of activities. After that, we start... our brains start to produced melatonin in a cyclical pattern, and for the first time, children acquire an ability to learn when to produce melatonin and when to not to produce... or when to decrease production of melatonin. Melatonin production is also depends on the light perception, so if we have children who do have light perception, they learn to produce an amount of melatonin depending on light perception.
NARRATOR: In a video clip, two young boys in hooded sweatshirts play catch with a football in the middle of a snowy street. The sun is close to setting behind some trees, and one of the boys catches the ball and then yawns before tossing the football back to his friend.
BERNSTEIN: If you're three to four... three to four months old, clearly, that your learning totally depends on the adults around you. If you're five to seven years old, when there is an establishment of hormonal patters, it's a combination of what you do and what people around you do.
When you're in your 20s, and level of melatonin for the first time starts to decrease slightly, it's basically up to you whether to maintain healthy sleep patterns. As you age, and levels of melatonin start to decrease — especially as you really, really age — people start to sleep in short periods of time. They start to take naps. Those famous naps that people take? That's the reason for it.
NARRATOR: In a video clip, a woman with dark hair naps on her bed under a maroon quilt. The bedroom is relatively bright, indicating it's a daytime nap.
BERNSTEIN: So questioned whether... how much you can regulate the melatonin production-- yes, you can regulate it a lot if you know what is happening, if you have a... if you recognize what steps to take in order to regulate melatonin production. Of course, children, they need our help in order to learn that and maintain this pattern.
CHAPTER 4: Development of a Circadian Cycle without light perception
BERNSTEIN: For children who are blind and visually impaired, there are at least two major components when we look at their sleep and sleep problems. Component number one, of course, it's light perception, establishment of circadian cycle.
And we typically address it by something we call structure. It means there is a sequence of activity that tells your brain whether to be awake and to have a low level of melatonin or an increased level of melatonin in preparation for the sleep. A very well known approach was developed by Dr. Richard Ferber.
NARRATOR: A graphic of the cover illustration of Dr. Ferber's book, "Solve Your Child's Sleep Problems," appears on the screen.
BERNSTEIN: And many children have learned good sleep habits by using Ferberization. Unfortunately, it does not always work with our population due to two reasons. Reason number one: very often, our children are slow learners, so in typical Ferberization approach, it takes three to seven days to teach children.
For some of our children, it takes dozens, sometimes hundreds, of exposure to teaching strategies before a child learns. Eventually they do, but it takes a long time. There is a good reason why children with visual impairment learn slower than typically developing children. The reason number one is lack of physical activity.
What's typical for a child with visual impairment is to be overprotected by adults, not to have opportunity for exercise and for movement that typically developing children develop... typically developing children use in order to highlight the difference between active state and sleep state. At Perkins, we pay a lot of attention to increasing physical activity with our students.
NARRATOR: In a video clip, we see a young boy who is visually impaired and also in a wheelchair preparing for a swim. His teacher pulls on his life vest and buckles it. Next, we see the boy exercising in the pool with another teacher.
TEACHER: Steady. Look mom, no hands.
NARRATOR: Later, both teachers assist the boy in exiting the pool by way of a set of stairs.
BERNSTEIN: We're teaching the child to be engaged in active physical activity throughout the day. Many of our children have a short attention span. It means that his activity needs to be short in duration, but what you can do once you establish a list of activities this child can do, you can recycle it, you can repeat it, and you can use communication strategies that you develop with your teacher or communication strategies with your child in order gradually to give more control child over... with activities to use.
Children love to move. Children love to play. Children love to exert themselves. Unless they're taught to sit and be quiet, you... most of the time, you will have a problem keeping child quite rather than encouraging child to move. So having a busy schedule of activity throughout the day is essential for any kind of teaching of circadian cycle.
CHAPTER 5: Visual Impairment ad Anxiety Issues
BERNSTEIN: Children with visual impairment have an overrepresentation of anxiety disorders, so in addition to Ferberization, you need to implement anxiety reducing strategies, teaching your child how to control anxiety as a component of teaching child to sleep.
NARRATOR: In a video clip, a young boy who is blind lies on a bed with his parents. ( shrieking ) As part of a bedtime ritual, his mother and father cuddle and tickle him as he rolls gently back and forth between them.
BERNSTEIN: And number one issue is level of anxiety. A child who has a high level of anxiety typically has problems getting to sleep and waking up in the middle of the night. So what a child needs to learn, basically, sensory integration strategies. With a young child, children... adults around the child need to provide sensory integration strategies.
With the older children, we teach them to use those strategies by themself. One of the strategies is basically... is not to keep child sleeping, because it's impossible, but give child something to do while child is in the bed. Our main sleep teaching strategy is to teach child basically to stay in bed and to use sensory integration equipment that we can provide. It could be as simple as additional pillow or as simple as a toy that doesn't produce noise but is engaging to the child. Or teaching child to breathe deeply 30 times. Or to recite alphabet in mind... quietly. Or to count to 30. And those strategies do work.
NARRATOR: In a video clip, we see a young boy who is blind sleeping in his crib. Nearby, is a yellow doll made from soft fabric with brown yarn for hair.
BERNSTEIN: What's good for one child is not necessarily good for another child. Some children love to have objects around them like blankets, pillows; some children like to have a clear space around them. If child is... does not have sleep problems, then it doesn't matter whether child sleeps in bed or on the couch or in the crib or, you know, any place in the house. If child does have sleep problem, it's essential that child have a special place for sleep only.
Children with anxiety develop obsessive compulsive rituals around going to sleep. One of my students, actually, the only place he could sleep was a stair... on the stairway between the stairs going up and down in his house.
That was the safest, the most calmest place for him to sleep that he has chosen. After... after teaching him sleep strategies, he happily transferred to sleeping in the bed. It took some time, it took some creative thinking on part of our staff, but he's sleeping in his bed now.
BERNSTEIN: Develop routine, sleep routine, of going to bed. It has... it doesn't have to be exactly at the same clock time, but it has to have the same sequence every night.
For some of the parents, I recommend to... to follow a television program or to follow a radio program schedule in order to signal to the parents when to start getting child ready to bed. Now, what steps does getting to sleep routine can vary from child to child, but I would never vary from day to day or from night to night. ( child laughing )
NARRATOR: In a video clip, 
. The boy holds hands with his father and the two of them dance to music. The boy smiles and laughs.
Next, we see the boy nestled on his mother's shoulder. They sway together to a song with a slower tempo.
BERNSTEIN: Let me go over some steps that would really be good. First of all, to have quiet activity just before going to sleep. Second, some kind of sensory integration activity. It could be a warm shower, but not necessarily a warm shower, because for some children, bath time is an exciting time, it's a playing time, it's a... it could be time in the rocking chair next to you or on your lap, or rocking chair... or have child on your lap could be exciting time for the child. So make... make your choice.
NARRATOR: In a series of clips, we see a young boy who is blind being helped towards the bathroom by his mother. Inside the bathroom, the boy stands with his father beside a tub full of water.
FATHER: There it is.
NARRATOR: After his bath, we see the boy lying on a rug in his bedroom, wrapped in a towel. His mother hands him his toothbrush so he can begin to brush his teeth.
BERNSTEIN: So you have quiet activity, sensory activity, after that, you need some activity that you share with the child, so you start nighttime routine with the shared activity.
It could be "reading" a book, it could be looking through pages, it could be playing a game together. It could be just sitting next to each other, sharing some kind of activity. And after that, child goes to bed... to bed you have chosen prior to developing this routine.
CHAPTER 7: Teaching a Child to Sleep
BERNSTEIN: What we typically do with a child who is only learning to stay in bed, we maintain physical contact for some time. So you're not talking to the child, but your child could be on child's back, on child's arm.
Idea is to signal to the child that being in bed is fine, that's what you're child is expected to do, that's what you expect child to learn. After a while, you move you hand away from the child. What we do, we call it, "decreased physical assistance." It's the same strategy that we use when we teach child to get dressed; the same strategy that we use when we teach child to eat by themself is decreased physical assistance.
MOTHER: Now put this leg up on the bed.
NARRATOR: In a video clip, a young boy who is blind has been placed into his crib by his mother. After raising the side of the crib and securing it, she caresses her son's back for a few moments before leaving the room.
BERNSTEIN: With decreased amount of tactile information the child gets from you, then we increase distance between ourself and... and the child before child goes to sleep. We are not talking, we are not telling child to go to sleep, we definitely are not yelling at the child; we are there, calmly waiting for child to go to sleep.
If child is trying to get up, we put the child down. So the goal is gradually start increasing the space between yourself and the child. Now, how long is going to take? It's so individual. I know children for whom we used the strategies for entire school year and it still didn't work, so what did we do? We helped child to produce... with the production of melatonin.
NARRATOR: In a video clip, a green pill bottle labeled "melatonin, three milligrams" sits on a counter. Several white pills are on the counter in front of the bottle.
BERNSTEIN: There are so many children who learn to sleep by administration of melatonin about half an hour before they go to sleep. Typically, it works. There are cases when it doesn't work.
The most typical reason why it doesn't work is because high levels of anxiety, and then it's whole different story than going to... going to sleep. It's not just one of the problems the child has, but most probably, it's one of the series of difficulties the child has, not only with transition to sleep, but with most of the transitions in his life from one adult, to another adult, from one activity to next activity, and most normally, there are other indications the child has high level of anxiety, and then anti-anxiety strategies and medication might help.
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