About Us




November 2009


Iceberg’s farewell

It is with mixed emotions that we share our news: After nearly 20 years the  
Iceberg will stop producing its quarterly newsletters. Our farewell issue is  
slated to be published in spring 2010. 
In 1991, the Iceberg newsletter’s inaugural issue went to press. At that time the Iceberg was one of the first parent and professional resources available that focused on Fetal Alcohol Syndrome and Fetal Alcohol Effects. Since that first newsletter, we have published more than 100 articles about caring for and supporting individuals affected by prenatal alcohol exposure. Our thousands of readers expanded internationally when the Iceberg began publishing online several years ago. 
Iceberg articles have been authored by professionals from many of our systems of care, by birth and adoptive parents, and by individuals affected by prenatal alcohol exposure. Topics have covered issues across the lifespan, from infancy to adulthood.  Many contributions have come from individuals with fetal alcohol spectrum disorders themselves, in the form of original poems, narratives and artwork. 
We are saddened that we no longer have the time and resources available to contribute to the community of those who care about prenatal alcohol exposure. But, at the same time, we know and are reassured that the resources available on the topic of FASD are more numerous and promising than ever, which makes it much easier to say goodbye. 
We invite you, as a reader, to share your personal comments and thoughts about the Iceberg, which will be printed in our last issue. Please email your comments to fas_iceberg@yahoo.com.

Members of the Fetal Alcohol Syndrome Information Service, publishers of Iceberg

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FASD’s Impact on Sleep Patterns

by Maida Lynn Chen, MD.

Common logic and experience tell us that a child who obtains adequate and good quality sleep is more likely to have a better subsequent day on many levels.  That child will be in a better mood, be better behaved, handle day-to-day stressors with fewer meltdowns, perform better in school, interact better with family and friends….the list goes on and on.  A child’s sleep is the center of many parental stresses, and getting your child to achieve good sleep is the goal for much of early parenthood. 

Unfortunately, for many children with FASD, that good night’s sleep remains elusive.  Children with FASD often have difficulties with multiple aspects of sleep.  Parents describe their children with FASD as having problems falling asleep and then staying asleep for the duration of the night.  Many children also have restless sleep and frequent night wakings.  Subsequently, they report more daytime sleepiness.  As opposed to adults, children who are sleep deprived are not overtly sleepy during the day.  Sleep deprivation in children often leads to other signs such as poor behaviors, mood swings, inattention at school, or worsened academic performance.  Commonly, children with FASD already suffer from some of those daytime dysfunctions. Sleep problems are unlikely to be the only cause of these daytime neurobehavioral problems; however, it is not difficult to imagine how optimizing the sleep of a child with FASD, much like optimizing the sleep of any child, would only help that child achieve his/her developmental potential.

Regardless of having FASD, problems surrounding sleep in children are common; a few of the most common are reviewed here.  Perhaps the most common childhood sleep problem does not involve the actual sleeping, but more so the inability to fall asleep (insomnia) at the beginning of the night or after having awoken in the middle of the night, and is called “Behavioral Insomnia of Childhood.”  Waking up in the middle of the night in many cases is a normal occurrence, and happens naturally between various sleep cycles.  Most adults and children fall right back asleep without assistance or sometimes without even the memory of having awoken. However, some children do not know how to fall back asleep on their own after a normal awakening or at the beginning of the night without the assistance of a parent, or the presence of a certain object/food item such as a bottle. Thus, they signal to the parent for either parental presence or for help getting the desired object, usually by crying or getting out of bed. When this happens repeatedly at the beginning and through the night, both parent and child become sleep deprived.  Some children resist going to bed, creating excuse after excuse as delays, pushing the envelope on a parent’s limit-setting skills.  Their bedtime resistance may be related to a developmentally appropriate fear (e.g. monsters in the bedroom) or to secondary gain of getting more time and attention from a parent. Those children whose resistance behaviors are inadvertently reinforced with a later bed time end up losing total sleep time and also become relatively sleep deprived.

It is important to note that there are times when awakenings at night are happening for pathologic causes.  The prime example of this is obstructive sleep apnea (OSA), which is when a pause in breathing occurs because of a blockage in the airway, which in children is often caused by things like large adenoids and tonsils, hypotonia (low tone), small chin/jaw, or in the other extreme, obesity.  OSA is considered common in childhood and adolescence, and is still likely under diagnosed in the community.  Common signs of sleep apnea are snoring or mouth breathing, restless sleep and bed-wetting, and it occurs more frequently in children with asthma, allergies, a history of prematurity, and those who are Asian- or African-Americans.  Because these kids are not getting a good night’s sleep, they are oftentimes dysfunctional during the day and demonstrate hyperactivity, inattention or even overt sleepiness.  The only way to officially diagnose OSA in childhood is to do something called a polysomnography, or an overnight sleep study.  This is an overnight test done in a sleep laboratory that tracks brain waves, breathing and cardiac patterns while sleeping at night.  Treatment for OSA can include a surgery to removed adenoids and tonsils, nasal medications, or a Continuous Positive Airway Pressure (CPAP) mask to wear during sleep to help with breathing. 

All people have something called a circadian clock, which is a body’s internal timing system that dictates when to get sleepy and to feel awake.  Thus, if a child’s circadian clock does not match what is socially accepted -- such that the child physiologically prefers to be awake at night and sleeping during the day -- that child may be mislabeled as having insomnia or conversely, be inappropriately sleepy.  This problem is naturally illustrated when we travel across time zones, commonly known as jet lag.  Infants do not have regular circadian rhythms usually until about 3-6 months of age. 

Why do children with FASD have so many sleep problems? The answer to that question is not known.  Although research on the topic is relatively new, there are some scientifically promising theories , but at this time they remain only theories.  It is possible that children with FASD have damage from the alcohol exposure to certain brain structures that are vital to the maintenance of sleep – such as areas that control our circadian rhythms and our sleep/wake balance.  This may lead to their brains not accurately processing the signals that they should be asleep, leading to frequent awakenings and insomnia.  Children with FASD may be predisposed to having obstructive sleep apnea and other breathing problems because of the shape of their faces and possibly because of neurologic damage to the areas that control how we breathe.  The same mechanisms that lead to attention deficit and hyperactivity problems may cause similar problems during sleep at night.  Learning how to independently sleep though the night successfully is an acquired skill that takes practice.  Children with FASD may have difficulties in achieving many of their developmental milestones, and successful sleeping may be on this list.

For a child with FASD who is having difficulty sleeping, an evaluation by a pediatric sleep medicine specialist may be beneficial, but should be discussed with the child’s pediatrician prior to that referral.  A sleep physician may be able to help sort out whether the problems are primarily behavioral, breathing related, or something else altogether.  The specialist may recommend an overnight sleep study, particularly if a breathing disorder like sleep apnea is suspected.  However, sleep studies are not indicated in every child with a sleep problem, and may not be readily available in every area.  Medications are often prescribed for these children to help them initiate and maintain sleep.  Unfortunately, as with many childhood disorders, the long-term effects of these medications on a growing child are currently not well known.  That does not mean that they are not of benefit; we simply do not know the full extent of benefits or adverse effects of these medications on children with FASD at this point in time. Further research is needed in many areas involving FASD and sleep.

Every child deserves the chance to obtain good quality and an adequate amount of sleep.  Children with FASD remain a challenge in this arena, but ongoing research will hopefully help to clarify why these sleep problems occur, and eventually to help direct treatments for these problems. 

Dr. Chen is the Associate Director of the Sleep Disorders Center at Seattle Children’s Hospital and on faculty at the University of Washington’s School of Medicine in Seattle.  She received her undergraduate and medical degrees from Northwestern University.  She completed her pediatric residency at Rush University in Chicago, and then went to Children’s Hospital Los Angeles to do her Pediatric Pulmonary Fellowship.  She joined the faculty at Seattle Children’s Hospital in 2005 and her research focuses on sleep problems in children with FASD and infants with prenatal alcohol exposure.   

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Review of Stephen Neafcy's "The Long Way to Simple" 

by Paul Connor

I came across Stephen's book one day while browsing for FASD-related books on Amazon.com. When I saw that he had created a guide with tips for adults living with FASD, I became quite interested. In my work, I am always looking for ideas and suggestions that could be helpful when working with adults with FASD. So I read this book hoping to find gems of wisdom. I was not disappointed. 
Stephen is a gentleman who was diagnosed with Fetal Alcohol Effect (FAE), now typically called ARND. Unfortunately, like many others, he was not diagnosed until he was an adult. As a child and adult, he had experienced many of the challenges and secondary disabilities of FASD, but had not understood why he had these difficulties. This book was written from his perspective, as a person living with FASD. It is geared toward others with FASD and is full of clear and concrete suggestions. It is also useful for those supporting or caring for individuals with FASD, as it could give them insight and ideas. In fact, there is a guide with each suggestion that addresses what caretakers can do to help their charges and to prevent their own burn-out. 
In his book, Stephen offers 30 tips or guidelines that he has found extremely helpful for himself. As the title of the book implies, these tips are "simple." But that doesn't mean that they are unimportant. Indeed, many of these tips can be extremely useful, though each reader will have to determine for himself which tips are applicable to his or her own situation. Often the tips discuss how to compensate for some of the cognitive challenges frequently faced by those with FASD. One such aid that I was unaware of is an online service that will call you with reminders for appointments, medications and other events. 
Many of the activities in the book are designed to help the reader learn about his or her own strengths and weaknesses. By becoming aware of these, the reader can then apply the appropriate compensation tips to help. Above all, with every idea that Stephen discusses, he reminds the person with FASD that "you are not alone." This is perhaps the most important message of the book. 
Stephen's book, "The Long Way to Simple," is extremely well written, gives very good practical ideas, and reaffirms that there is considerable hope. I would strongly recommend it to anyone involved with FASD including affected individuals. It is a great book!

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Review of "Teaching the Moving Child: OT Insights that will transform your K-3 Classroom," by Sybil M. Berkey

Reviewed by Tracy Jirikowic

Teaching the Moving Child is a book written by an occupational therapist for classroom teachers. The book draws attention to and discusses important links between movement and learning, especially for children in grades K-3. The author builds on her many years of experiences as a school-based OT, and draws from current literature in neuroscience, education and occupational therapy to describe ways that movement, sensation and the classroom environment can support student learning. Teaching the Moving Child also focuses on how other important factors including fine motor development, hand skills and handwriting readiness impact participation and performance in early academic tasks.  

The book is filled with practical examples and strategies that are often used by occupational therapists in the classroom. The examples and strategies are presented in the context of current educational practices and in the spirit of shared knowledge and collaboration to support the success of all students. This book is an excellent resource for educators in terms of the rich and “user-friendly” theoretical and foundational knowledge that is presented. Coupled with the abundance of useful classroom strategies and adaptations that teachers may want to consider and implement, I feel this book would be very useful for those working with children with fetal alcohol spectrum disorders.   

Tracy Jirikowic is an occupational therapist and assistant professor in the Division of Occupational Therapy at the University of Washington in Seattle.


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Seattle, WA 698145-2597