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Donna Brostek Lee, Ph.D.

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The Role of Sleep... Lack of sleep can cause: Changes in mood Decreased motor functions Poor attention span and performance Hyperactivity/impulsivity Emotional and behavioral changes Reduced cognitive functions (Dahl, 1996a; Dahl, 1999; Gmez et al., 2006; Pilcher & Huffcutt, 1996; Touchette et al., 2007)

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The Impact of Insufficient Sleep in Early Childhood Most critical is the fact the Touchette et al. (2007) found evidence that there is a critical period in early childhood where the lack of sleep is particularly detrimental to various aspects of development even if sleep duration normalizes later on (p. 1218).

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The Importance of Sleep within the Family Context Reduced sleep quality for a child can result in: Poor paternal and maternal mental health A negative impact on parental sleep and marital relationships Caregiver stress, fatigue, and moodiness Carryover effects to other siblings (Dahl & El-Sheikh, 2007b; Meijer & van den Witenboer, 2007; Meltzer & Mindell, 2007; Smart & Hiscock, 2007)

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Sleep in America Based on National Sleep Foundation recommendations, infants should receive 14-15 hours of sleep a day, while toddler should receive 12-14 hours. According to the Sleep in America Poll (2004), 50% of infants and 34% of toddlers are not getting enough sleep! This has serious, lasting implications for todays children!!!

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Sleep and the Blind All research shows that sleep problems are significantly higher in individuals who are blind or visually impaired than the general population, regardless of age. The degree of vision loss positively correlates to having a sleep problem, as does the presence of additional disabilities. (See Chapter I for full references)

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The Rationale for the High Rates Sleep is mainly regulated through light perception which occurs when light is passed through the retinohypothalamic tract (RHT) from the retina to the suprachiasmatic nucleus (SCN) of the hypothalamus. The SCN then relays zeitgebers to the pineal glad, triggering the release of melatonin to induce sleep at nighttime. Thus, the lack of light perception by the retina = inappropriately timed release of melatonin.

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Zeitgebers and Circadian Rhythms Sleep is controlled by circadian rhythms which are developed from zeitgebers (German for time givers). Light is the strongest of zeitgebers, but other lesser ones can be mealtimes, activities, and even noise levels. Zeitgebers play a key role is the daily resetting of the circadian clock to 24-hours.

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Free-Running Circadian Rhythms and the Blind About 50% of individuals who are blind have free- running circadian rhythms (Morgenthaler, Lee-Chiong, et. al., 2007). This means those individuals may have days as long as 25-hours, causing periods when ones days and nights are completely switched!

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Example of a Normal Circadian Rhythm in a Toddler (Lapierre & Dumont, 1995, p. 121)

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Example of a Free-Running Circadian Rhythm (Lapierre & Dumont, 1995, p. 121)

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The Problem Because sleep problems tend to persist from infancy to later childhood (Mindell, 1993), especially in children with disabilities (Quine, 1991), it is important for the parents of young blind children to be aware of the possibility of such sleep problems and to learn to deal with them effectively (Mindell & De Marco, 1997, p. 37). Given the impact of sleep problems on a childs development and learning, in addition to negative family implications, early interventions for sleep problems in young children who are blind or visually impaired are critical!

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Intervention Types There are two major intervention types for sleep problems in young children who are blind or visually impaired. These include: Pharmacologic interventions Behavioral interventions

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Pharmacologic Interventions Consists for exogenous melatonin supplements ranging in dosage from 0.02-10 mg Timing and dosing is very difficult Works most effectively when initiated with a circadian cycle closely resembling that of the desired pattern. We are decades away from understanding the long term effects, particularly in children who are pre- pubescent. Not regulated by the FDA Not always effective Needed throughout ones lifetime

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Behavioral Interventions Should be at the forefront of any plan to address sleep problem. Safest and most cost-effective Should start with good sleep hygiene and positive sleep associations, then moving to extinction, graduated extinction, bedtime fading/positive routines, scheduled awakenings, and parental education Found to be over 80% effective across 53 treatment studies of infants and young children reviewed by the American Academy of Sleep Medicine (Mindell et al., 2006) Much more effective the younger it is introduced, offering little help to adults

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The Importance of Sleep Hygiene & Positive Sleep Associations Sleep hygiene refers to factors such as optimizing the environment, enforcing positive sleep routines, use of scheduling, and avoiding caffeine in the evening. Sleep associations are those behaviors that occur at the time of sleep initiation (Mindell & Owens, 2010, p.33). Brief awakenings occur 5-7 times at night (Dahl, 1996b). If the sleep associations that one falls asleep to are no longer present during one of these awakenings, the individual will fully awaken.

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Can Ambient Water Sounds Improve Sleep? Anecdotal evidence of an infant and toddler, both with septo-optic dysplasia, NLP, and no other known disabilities. Gia Successfully used a bubble tube used for 7 + years Sam Therapeutic water fountain created a very strong association to nighttime sleep

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The Theories... Both young children had polyphasic sleep schedules, thus were undergoing circadian rhythm development Typically weaker zeitgebers became stronger, primary ones Lack of other confounding issues such as intellectual limitations and other medical conditions The ambient water sound also acts a positive sleep association Needs further research with empirical data

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The Approved Proposal To formally test the effectiveness of a bubble tube (the ambient water sound) in improving sleep problems of three young children who are blind.

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Materials Three bubble tubes Three ActiSleep Monitors which meet the practice parameters of the American Academy of Sleep Medicine (2007)* ActiLife analysis software program Sleep logs kept by caregiver(s) *ActiGraphy is considered more reliable by sleep logs (Ancoli-Israel et al., 2005)

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Participant Criteria Three young children between the ages of 9 and 36-months-old (adjusted for prematurity) A visual acuity of NLP or LP only Sleep problem as identified by caregiver(s) that include one or more of the following: Trouble getting the child to sleep at night, frequent and prolonged nighttime awakenings, and excessive daytime sleepiness No other additional disabilities or major medical conditions such as: Seizure disorders, chronic ear infections, and gastroesophageal reflux Screened for other common sleep disorders that include: Sleep walking, sleep terrors, confusional arousals, bruxism, bedwetting, obstructive sleep apnea, restless legs syndrome, periodic limb movement disorder, narcolepsy, or insomnia Recruited from colleagues working in early intervention, listservs, and organizations serving the blind/VI

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Participants Angela: 9-months-old with Septo-Optic Dysplasia (SOD). Developed diabetes insipidus at the start of the 2 nd B phase Lisa: 34-months-old with SOD with a history of growth hormone deficiencies Emily: 32-months-old with Microphthalmia, Glaucoma, & Sclerocornea

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Procedure Single-subject A-B-A-B design Initial baseline phase (A): Establish current sleep problems/circadian rhythm disorder Initial intervention phase (B): Introduce bubble tube Baseline reintroduced (A): Removal of bubble tube looking to establish a trend back to the original baseline Intervention reintroduced (B): Reintroduce the bubble tube looking to reestablish the initial B phase

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Independent & Dependent Variables Independent variable: Activation of the bubble tube at nighttime Dependent variables: Time to fall asleep Frequency and duration of nighttime awakenings Frequency and duration of daytime naps Total time slept per a 24-hour period

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Research Questions??? Does the use of a bubble tube at nighttime help young children (9 to 36-months -old) who are blind decrease the time it takes them to fall asleep at night? Does the use of a bubble tube at nighttime help young children (9 to 36-months -old) who are blind decrease the frequency and duration of nighttime awakenings? Does the use of a bubble tube at nighttime help young children (9 to 36-months -old) who are blind decrease the frequency and duration of daytime naps? Does the use of a bubble tube at nighttime help young children (9 to 36-months-old) increase their total time slept per day?

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Angelas Sleep Patterns

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Lisas Sleep Patterns

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Emilys Sleep Patterns

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Social Validity All families rated the effectiveness as moderate (3 on a 1 5 scale) Angela Overall impact of sleep problems at start and end was rated minimal Lisa Overall impact of sleep problems at start was rated moderate, no impact at end Emily Overall impact of sleep problems at start was rated as extremely severe, highly severe at end Parents felt it worked the first time and were going to try again during her next sleep cycle

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Participant Variables Angela Diagnosis of diabetes insipidus likely played a large role in sleep issues Lisa Lack of bedtime routine and poor sleep hygiene Co-Slept with parents Engaged in stimulating activities during nighttime awakenings Poor parental knowledge on sleep Emily Possible timing error of when to start bubble tube Importance of charting sleep patterns

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Study Variables Difficulty in finding participants Significant commitment by family Participants had very different sleep problems Instrumentation Testing Effect History Maturation Parental acceptance of problem

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Limitations & Future Research Research Questions Overlap Future research needed: Combine auditory sleep association stimuli with parental education Broadening participant criteria Other sounds including mp3s Timing of bubble tube with children that have free running circadian rhythms

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Implications for Early Intervention: Lack of sleep directly impacts the success of early intervention services Importance of working with families and helping them address sleep problems as early as possible Education for parents on good sleep hygiene and positive sleep associations is critical Sleep diaries and monitoring sheets are pivotal in identifying the problem

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Questions??? Donna Brostek Lee, Ph.D., TVI, COMS Western Michigan University TCVI/OMC Program Co-Coordinator University of Kentucky Assistant Professor Starting August 2012 E-mail: donna.b.lee@uky.edudonna.b.lee@uky.edu