Number 56 • January 2016



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Physiological Self-Regulation in CHARGE Syndrome

Andrea E. Larsen1, Timothy S. Hartshorne2, David Brown3, and Jude Nicholas4

“Once in graduate school when I was studying at my favorite study carrel in the library, someone sitting right behind me started tapping the desk with his pencil. It slowly drove me crazy. The noise completely distracted me, I began to squirm in my chair, I started to sweat, and my stress levels increased dramatically. I lost the ability to keep myself in a nice, calm state. Several interventions posed themselves, one was rather violent; but, the most reasonable was to move to a different carrel.” (Tim Hartshorne)


Consider the experience of walking into your living room at home. Is your attention drawn to the paintings on the wall? Or to the peculiar way the furniture is arranged? Most likely you do not even notice. These perceptions are habitual for you. They have faded into the background. But imagine instead walking into the room to show a friend who has never seen it before. Now you notice the discoloration on the wall, and the messy way papers and magazines are piled on the coffee table. Your perceptions have become much more sensitive to the environment.

Humans generally learn how to habituate to their experience, both internal and external. Habituation is the process by which an individual decreases or ceases to respond to an initially novel stimulus after repeated presentations. In other words, we stop noticing that crack in the ceiling because it has become so familiar. Thus, habituation is characterized as the filtering out of sensory impressions which are no longer relevant. If we could not do that, we would end up being highly over-reactive, as with the tapping of the pencil. At other times it is beneficial to be highly sensitive to what is going on around us so that we do not miss noticing things that could be very important.

Physiological self-regulation refers to the ability to alter internal states and functions to maintain or regain a state of homeostasis in response to demands on the individual (Sedges, 2007). It is important to be able to regulate homeostasis, like a thermostat. Self-regulation involves the ability to efficiently adapt to and alter ones response to over and under stimulation. Physiological regulation describes the way the individual reacts, or their reactivity, to stimulation, which is under the control of the somatic, endocrine and autonomic nervous systems. However, it is also capable of conscious and deliberate management. Self-regulation attempts to manage this reactivity in a manner that allows the individual to still pursue goals. If you need to study, and your arousal level is too high (over reacting) where you are sitting, you might try moving to a less distracting spot.

Dunn (1997) describes how self-regulation can modify the degree of arousal (or reactivity) that we experience. In this model, we may be in a state where we are easily able to ignore much of the external stimulation in our environment, and maintain a low arousal level. We have habituated to the distracting stimulation in the environment (you tune out the pencil tapping). Or we may be in a state of high alert and notice everything going on around us. We are in a state of sensitization (the tapping seems to become more pronounced). Self-regulation can support habituation, or under arousal, by simply not reacting to or tuning out any stimulation (simply tune out the pencil tapping), or it can support sensitization, or over arousal, by deliberately noticing and reacting to stimulation (react strongly to the tapping). On the other hand self-regulation can actively work against the level of arousal by focusing full attention on all aspects of the situation when under aroused (sensation seeking), or by withdrawal of attention away from stimulation when over aroused (sensation avoiding). The pencil tapping situation involved a highly sensitized state, and the initial response was reacting to the stimulus. Moving to a different, quieter, carrel, would have been the more active self-regulatory strategy of sensation avoiding.

An individual’s capability to efficiently self-regulate rests upon several factors related to the maturation of psychological and physiological functioning (Marcovitch, Calkins, Leerks, O’Brien, & Blankson, 2010). Although limited, infants display regulatory processes from birth, and these become more sophisticated as they develop. Most of the stimulation that infants must first learn to react to is through sensory input. They see, hear, smell, taste, and touch, and they learn to balance (vestibular sense) and they figure out where their body parts are and how they are attached (proprioceptive sense). Using each of these senses they gradually learn to habituate or react as needed for the task in front of them; for example, they can tune a noise in or out depending on their goals at the moment. The responses produced as they self-regulate are generally found to be fairly stable amongst infants, but the sensory threshold level required to generate a response may vary (Calkins & Fox, 2002). Physiological self-regulation requires the active management of these thresholds of habituation and reactivity to allow optimal performance in the pursuit of a goal. Capabilities to self-regulate physiological states become increasingly more controlled as one develops. In children, gains in self-regulation have been found to correlate with increased ability to attend and motor control (Calkins & Fox, 2002).

The proper functioning of many internal and external responses is dependent on the maintenance of a physiological balance referred to as homeostasis. Numerous physical and chemical variables, such as one’s body temperature, are constantly maintained within a set range. Maintaining a homeostatic balance is crucial for the effective functioning and survival of all cells. Preserving one’s internal environment can further influence one’s reactivity, and the ability to uphold a desired level of awareness (Bornstein & Suess, 2000).

There are several physiological measures of how well the individual self-regulates. Resting heartbeat (Groome, Loizou, Holland, Smith, & Hoff, 1999), brain electrical activity (Compton, Hofheimer, & Kazinka, 2013), and levels of the hormone cortisol (Calkins & Fox, 2002) have all been used to better understand self-regulatory strength. Researchers have also been interested in how self-regulating can wear a person out, making it harder to self-regulate the next time. If you use your self-regulatory strength to tune out pencil tapping, you may have a harder time later that same day when you have to regulate another event. It appears blood glucose levels are affected. Reductions in self-regulatory strength due to declining glucose levels can be generally reversed through glucose consumption (Galliot, Baumeister, DeWall, Maner, Plant, Tice, & Brewer, 2007).
Physiological Self-Regulation in CHARGE

Individuals with CHARGE syndrome are truly multi-sensory impaired (Davenport & Hefner, 2011). The initial development of self-regulation in infants is largely dependent upon sensory stimuli. Therefore, a child born with CHARGE is immediately placed at a disadvantage for the development of self-regulatory mechanisms. Problems with being able to completely experience the sensory world can impact the understanding of the environment, reduce the benefit of modeling, and increase the level of confusion and uncertainty. Children with CHARGE will still make self-regulatory adaptations, but these can take a long time to create. For example, the boy pictured here is watching television. This is normal viewing posture when you have no vestibular sense, upper visual field loss, poor tactile and proprioceptive perception, and low muscle tone. This boy has figured out a way to regulate his attention by stabilizing and thus regulating himself. Hanging upside down by children with CHARGE is frequently reported by parents. It can be a way to regulate the physiological state of the individual so that goals may be achieved.

Difficulty with balance is common in CHARGE. Brown (2005) identifies challenges such as memory deficits, managing sensory perception, and utilizing body language. Also impacted are postural control, equilibrium, muscle tone, and motor coordination. Low muscle tone has been related to diminished levels of sensory input and perceptual awareness. Balance difficulties pose delays in the maintenance of a stable visual field and may contribute to attentional and motor development deficits. The possible impact on self-regulation is not known, although research has found that increased attentional capacities and motor control signify advanced self-regulation in infants (Calkins & Fox, 2002). Vestibular problems would most likely make certain kinds of physiological self-regulation more challenging because the person must deal with and attend to their unsteadiness, in addition to whatever else might be confronting them.

Children with CHARGE typically display a variety of anomalies that interfere with proper neurodevelopment (Gilles, 2011). Multiple cranial nerve anomalies appear to be common. These nerve dysfunctions may be related to absent or reduced sense of smell, breathing difficulties, and problematic issues pertaining to swallowing. Dysfunction of the nerves within the face may result in facial palsy and a significantly reduced ability to taste. The impact of neurological differences have yet to be studied; however, they would likely impact the child’s ability to self-regulate.

Executive functions, presumed to emanate from the prefrontal cortex, are those capacities used to organize oneself in the environment so that the individual can sustain attention to tasks, shift attention, inhibit behaviors, and initiate actions. There is evidence linking executive functions with the physiological response and regulation of stress (Williams, Suchy, & Rau, 2009). For instance, cardiac activity (i.e. heart rate), a measure of stress reactivity, is controlled, in part, by the pre-frontal cortex, the same brain region housing many of the cognitive processes encompassed by executive functions (Lin, Heffner, Mapstone, Chen, & Porsteisson, 2014). Thus impaired executive functions are likely to have a direct effect on the regulation of stress response systems. Hartshorne, Nicholas, Grialou, and Russ (2007) used the Behavior Rating Inventory of Executive Function (BRIEF) to study executive functioning in children with CHARGE. High scores were found for shifting attention, the ability to self-monitor one’s actions, and inhibiting behavior. The BRIEF has a “behavioral regulation index” on which over half the children received clinical scores.

Self-regulation can also be impeded by pain (Sauer, Burris & Carlson, 2010) and stress (Blair and Diamond, 2008). Children with CHARGE syndrome are at risk for experiencing much higher levels of physical pain and psychological stress throughout their lives (Nicholas, 2011; Stratton & Hartshorne, 2011). Both internal and external stressors such as the presence of emotional stress and physical pain initiate the body’s physiological stress response in the attempt to restore homeostasis. Individuals with CHARGE appear likely to experience many threats to their homeostatic balance, and the resulting stress can impede the maintenance of physical, cognitive, and emotional difficulties, and hinder self-regulatory capacities (Sauer et al., 2010).


Possible Interventions

Sensory Stimulation

The first means of developing self-regulatory skills during infancy is typically dependent upon one’s senses. Promoting sensory stimulation may be beneficial for the self-regulatory capacity in children with CHARGE, due to extensive multi-sensory impairments. However, each child diagnosed with CHARGE possesses their own unique sensory needs. Occupational therapists can create “sensory diets” specifically tailored towards each individual. A “sensory diet” refers to a list of recommended activities and modifications based on the child’s daily sensory needs, such as the use of a trampoline, a sandbox, simple exercises, finger-fidgeting, and applying a weighted vest or blanket (Nackley, 2001). Before a suitable “sensory diet” can be generated, the child should be assessed for deficits in motor control and proprioceptive, vestibular, and tactile information processing.


Mindfulness exercise

Interest in mindfulness interventions has been growing for a number of years (Brown, Ryan, & Creswell, 2007). The key to self-regulation in this context is the directed attention of the person to their subjective internal, emotional and physical experience (Brown, et al, 2007). Yoga is one mindfulness exercise that has been used with children who are deafblind (Karnad, 2002). Barrey-Grassick (2011) adapted Tai Chi for children who are deafblind and those with CHARGE. These practices have the potential to develop self-regulation skills.


Wilbarger Protocol

A unique treatment plan known as the Wilbarger protocol, also referred to as brushing and joint compression, was specifically designed to meet the needs of children who experience deficits in sensory reception and integration. It is intended to help children achieve and sustain optimal levels of arousal (Kimball, Lynch, Stewart, Williams, Thomas, & Atwood, 2007). Application of the protocol not only entails sensory stimulation, but promotes relaxation which can further aid in the reduction of stress (Kimball et al, 2007).

Employing the technique involves a specialized non-scratch brush which is used to apply deep pressure. Following the pressure, each of the major joints must then be compressed. This procedure must be used only after proper training, and followed on a routine basis for optimal benefit (Kimball, et al 2007).
Diet

The ability to utilize self-regulation is affected by blood glucose levels, and so a balanced diet and adequate fluid intake is important. It is beneficial to eat several smaller meals throughout the day and focus on including a sufficient amount of carbohydrates into the diet. Foods lower on the glycemic index are preferred because they prolong the release of glucose, which aids in reducing fatigue (Hagger, Wood, Stiff & Chatzisarantis, 2010).


Case Example

The student was an eight year old boy, profoundly deaf, blind in one eye with reduced visual field in the other eye, late independent walking (aged 4), and with continuing feeding issues. He attended a program for the deaf. The boy had impressive receptive and expressive language in American Sign Language, but showed characteristic difficulties with initiating utterances. Problem behaviors’ were distractibility, impulsivity, and physical aggression against others. During two days of observation it was apparent that episodes of high arousal leading to violent outbursts were related primarily to periods of enforced sitting for up to 25 minutes at a time. Recommendations included providing a high desk so that the boy could stand to do his schoolwork – he enjoyed this and showed greatly improved attention span during lessons with fewer aggressive outbursts, swaying his body from side to side and stepping from one foot to the other as he worked. Significantly improved attention was also observed after the weekly 30-minute adaptive physical exercise session, so as a result these sessions were increased to three times a week, and physical activities providing more and stronger proprioceptive and vestibular input were added – mainly swinging by the arms from an overhead beam, trampolining, wheelbarrow walking (student walks on their hands and arms with their legs held up by an adult), and pushing the heavy equipment cart a long distance to and from the exercise room. The student had received an occupational therapy brushing and joint compression program as an infant, and the recommendation that this kind of program should be offered again was taken up by the school, who reported that the student enjoyed the session twice a day and appeared to benefit from it in terms of improved self-regulation with better attention span. A more general recommendation was for classroom staff to wait for the student’s visual attention before communicating to him, to sign a little more slowly, and to generally reduce the pace at which activities were carried out. All these suggestions were facilitated by the fact that the student already had an allocated one-on-one classroom aide – originally purely to impose physical control on the student, but increasingly fulfilling the functions of a deafblind intervenor as the benefits of these recommended changes became apparent.


1 Andrea_larsen35@hotmail.com (Lives in Alpena Michigan)
2 Department of Psychology, Central Michigan University (harts1ts@cmich.edu)
3 welshgold@gmail.com (Deafblind Education Consultant-Retired)
4 Regional Resource Centre for Deafblind/Haukland University Hospital, Bergen, Norway (jude.nicholas@statped.no)

References

Barrey-Grassick. S. (2011). Sign Chi: Signing a way to relaxation and stress reduction. DbI Review, 47, 11–13.


Blair, C. & Diamond, A. (2008). Biological processes in prevention and intervention: The promotion of self-regulation as a means of preventing school failure. Developmental Psychopathology, 20, 899–911.
Bornstein, M. H., & Suess, P. E. (2000). Physiological self-regulation and information processing an infancy: Cardiac vagal tone and habituation. Child Development, 71, 273–287.
Brown, D. (2005). CHARGE syndrome “behaviors”: challenges or adaptations? American Journal of Medical Genetics, 133A, 268–272.

Brown, K. W., Ryan, R. M., & Creswell, J. D. (2007). Mindfulness: Theoretical foundations and evidence for its salutary effects. Psychological Inquiry, 18, 211–237.


Calkins, S. D., & Fox, N. A. (2002). Self-regulatory processes in early personality development: A multilevel approach to the study of childhood social withdrawal and aggression. Development and Psychopathology, 14, 477–498.
Compton, R. J., Hofheimer, J., & Kazinka, R. (2013). Stress regulation and cognitive control: Evidence relating cortisol reactivity and neural responses to errors. Cognitive, Affective & Behavioral Neuroscience, 13, 152–163.
Davenport, S. L. H., & Hefner, M. S. (2011). Overview and sensory issues in CHARGE. In T. S. Hartshorne, M. A. Hefner, S. L. H. Davenport, & J. W. Thelin (Eds.). CHARGE syndrome (pp. 3–12). San Diego, Plural.
Dunn, W. (1997). The impact of sensory processing abilities on the daily lives of young children and their families: A conceptual model. Infants and Young Children, 9(4), 23–35.
Galliot, M. T., Baumeister, R. F., DeWall, C. N., Maner, E., Plant, A., Tice, D. M., & Brewer, L. E. (2007). Self-control relies on glucose as a limited energy source: Willpower is more than a metaphor. Journal of Personality and Social Psychology, 92. 325–336.
Gilles, E. (2011). Neurodevelopment in CHARGE. In T. S. Hartshorne, M. A. Hefner, S. L. H. Davenport, & J. W. Thelin (Eds.). CHARGE syndrome (pp. 139–149). San Diego, Plural.
Groome, L. J., Loizou, P. C., Holland, S. B., Smith, L. A., & Hoff, C. (1999). High vagal tone is associated with more efficient regulation of homeostasis in low-risk human fetuses. Developmental Psychobiology, 35, 25–34.
Hagger, M. S., Wood, C. W., Stiff, C., & Chatzisarantis, N. L. D. (2010). Self-regulation and self-control in exercise: The strength-energy model. International Review of Sport and Exercise Psychology, 3(1), 62–86.
Hartshorne, T. S., Nicholas, J., Grialou, T. L., & Russ, J. M. (2007). Executive function in CHARGE syndrome. Child Neuropsychology, 13, 333–344.
Karnad, D. (2002, January – June). Yoga for the deafblind. DbI Review, 29, 4–6.
Kimball, J. G., Lynch, K. M., Stewart, N. E., Williams, M. A., & Thomas, K. D. (2007). Using salivary cortisol to measure the effects of a Wilbarger protocol-based procedure on sympathetic arousal: A pilot study. American Journal of Occupational Therapy, 61, 406–413.
Lin, F., Heffner, K., Mapstone, M., Chen, D., & Porsteisson, A. (2014). Frequency of mentally stimulating activities modifies the relationship between cardiovascular reactivity and executive function in old age. American Journal of Geriatric Psychiatry, 22, 1210–1221.
Marcovitch, S., Leigh, J., Calkins, S. D., Leerks, E. M., O’Brien, M., & Blankson, A. N. (2010). Moderate vagal withdrawal in 3.5 year-old children is associated with optimal performance on executive function tasks. Developmental Psychobiology, 52, 603–608.
Nackley, V. L. (2001). Sensory diet applications and environmental modifications: A winning combination. Sensory Integration Special Interest Section Quarterly, 24(1), 1–4.
Nicholas, J. (2011). Experiencing Pain in CHARGE. In T. S. Hartshorne, M. A. Hefner, S. L. H. Davenport, & J. W. Thelin (Eds.). CHARGE syndrome (pp. 339–351). San Diego, Plural.
Sauer, S. E., Burris, J. L., & Carlson, C. R. (2010). New directions in the management of chronic pain: Self-regulation theory as a model for integrative clinical psychology practice. Clinical Psychology Review, 30, 805–814.
Sedges, H. (2007). Infant learning and physiological self-regulation during the Visual Expectation Paradigm (Master’s thesis). Available from http://trace.tennessee.edu/utk_gradthes/216.
Stratton, K. K., & Hartshorne, T. S. (2011). Experiencing stress in CHARGE syndrome. In T. S. Hartshorne, M. A. Hefner, S. L. H. Davenport, & J. W. Thelin (Eds.). CHARGE syndrome (pp. 353–359). San Diego, Plural.
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