EI Talk: A Blog for Early
Childhood Professionals


Fetal Alcohol Syndrome – Preventable but Persistent

Early Childhood Interventions September 15, 2014

Fetal Alcohol Syndrome Disorder (FASD) affects an estimated 40,000 infants each year (SAMSHA, 2003). FASD is an umbrella term describing a range of characteristics that can occur in children prenatally exposed to alcohol. The characteristics may include physical,

behavioral, and/or learning disabilities that last a lifetime. According to National Organization on Fetal Alcohol Syndrome (NOFAS, 2014) FASD includes 4 distinct syndromes associated with prenatal alcohol exposure.

  1. Fetal Alcohol Syndrome (FAS), Partial
  2. Fetal Alcohol Syndrome (PFAS), Neurobehavioral Disorder
  3. Associated with Prenatal Alcohol Exposure (ND-PAE), and
  4. Alcohol Related Neurodevelopmental Disorder (ARND) are the

 FASD is characterized by unique physical features and a variety of problems that can impact learning and social participation. Physical features of FASD are depicted in the figure:

Faces in Fetal Alcohol Syndrome


Other characteristics of the syndrome may include: intellectual disabilities, learning disabilities, poor impulse control, language deficits, memory deficits, and poor social adaptability. Fetal Alcohol Syndrome is the leading cause of intellectual disabilities in children (Shapiro & Batshaw, 2013) yet it is 100% preventable. It is unclear how much alcohol is needed to affect a fetus. According to the CDC, the U.S. Surgeon General, and the American Academy of Pediatrics, there is no known safe amount of alcohol to drink while pregnant. There is also no safe time during pregnancy to drink and no safe kind of alcohol. Research indicates that even drinking small amounts of alcohol while pregnant can lead to miscarriage, stillbirth, prematurity, or sudden infant death syndrome.

If ways can be found to curb the intake of alcohol among pregnant women, a huge number of children would not have the live with the negative consequences alcohol exposure. Services and supports are needed and necessary to prevent women from drinking while pregnant. Prevention of drinking during pregnancy, especially during the critical first few months is challenging for a host of reasons. Alcohol consumption in pregnant women is not a single issue.

A study done in Washington State among women who had given birth to children with FASD provides insight into the intricacies of this issue. Intersecting social challenges include mental health disorders, physical and/or psychological abuse, and lack of education. Ninety-six percent of women who gave birth to a child with FAS had at least one mental health disorder, 95% had a history of sexual or physical abuse, 61% had less than a high school education, 25% had some college education, 77% had an unplanned pregnancy, and of that group 81% did not use birth control although most of the women ( 92%) wanted some form of birth control, and 59% had an annual gross household income of less than $10,000 (Grant, et al, 2009).

Unlike other characteristics of vulnerable populations, alcohol consumption cuts across ethnic, racial, and economic lines. Perreira and Cortes (2006) found that all segments of the population admitted to drinking alcohol while pregnant: 17% White, non-Hispanic, 9.7% Black, non-Hispanic, and 6.4% Hispanic. Almost 12 % of those who said they were born in the United States drank alcohol during pregnancy, as opposed to 8.2 percent who said they were foreign born. It is evident that this issue is persistent throughout the country and that there is not a specific demographic which can be targeted to address the problem. Additionally, as demonstrated by the findings from Washington state alcohol consumption in pregnant women may be symptomatic of much more complicated issues that have far and long reaching effects.

Deciding where to begin to address the cause of the problem is difficult and complex. Do organizations first target the poverty, the mental illness, the maltreatment, the low maternal education, the lack of access to birth control, or the lack of prenatal care? Thus far, policy has focused not on the mother but on the child, often taking the child out of the home, as is evidenced by the overwhelming number of children in the foster care system who have FAS. Children in foster care are 10-15 times more likely to be affected by prenatal alcohol exposure than other children (FASD Center for Excellence, 2007). The most notable prevention measure is the FDA regulation that all alcohol products contain a warning label that alcohol can damage a fetus. Additionally, there are some public relation campaigns and public service announcements targeting high risk populations.

By framing the use of alcohol in pregnant women as a symptom of a larger issue, the conversation regarding policy could shift away from simply putting warning labels on alcoholic beverages and taking the child out of the home to policies that address the complexity of the problem and the intersecting needs of the mother. Prevention is obviously a key component of any policy or program created to address this problem. Nurse practitioner and gynecologists/ obstetricians training should include recognition of alcohol use, anticipatory guidance on the effects of alcohol consumption while pregnant, and recognizing and supporting women with mental health concerns, domestic violence, social service needs, etc. Most importantly, treatment could be determined by recognizing that the pregnant woman who is drinking may have complex health and social service needs as opposed to a “drinking problem”. This same perspective could be used to inform decisions regarding the child after it is born. Indeed, if the child needs to be taken out of the home, efforts could be made to also treat the mother for the larger issue of her alcohol or substance abuse. Lastly, because there is such a high percentage of children with alcohol related disabilities in foster care, it is also important to train foster parents on how best to support the child. By doing this, the child and the foster family are given an opportunity to develop a close relationship and experience success for the child. Dealing with alcohol related disabilities is hard for any family and thus support and knowledge surrounding the disability is key.

FASD is 100 % preventable. However, due to a variety of reasons and the myriad of complex interrelated issues, the likelihood of eliminating developmental disabilities due to alcohol is slim. Policies can, however, begin to address the interrelated issues of the pregnant woman by viewing her alcohol consumption as a symptom and not the root issue. Additionally, foster families can be better educated about the support needed for children diagnosed with FAS. The disabilities caused by prenatal alcohol consumption are serious and need to be taken as such. The reasons and issues surrounding the pregnant woman’s drinking are also serious and need to be taken as such. 

References

  • Grant T.M., Huggins, .J.E, Sampson, .P.D, Ernst, .C.C, Barr, .H.M., Streissguth, A.P.(2009). Alcohol use before and during pregnancy in western Washington, 1989-2004: Implications for the prevention of fetal alcohol spectrum disorders. American Journal of Obstetrics and Gynecology, 200(3): 278.e:1-8
  • National Organization on Fetal Alcohol Syndrome. (2014). FASD: What Everyone Should Know. Available from:http://www.nofas.org/wp-content/uploads/2014/05/Fact-sheet-what-everyone-should-know.pdf
  • Substance Abuse and Mental Health Services Administration (2014). About FASD. Available from http://fasdcenter.samhsa.gov/aboutUs/aboutFASD.aspx
  • Perreira, K. & Cortes, K. (2006). Race/ethnicity and nativity differences in alcohol and tobacco use during pregnancy. American Journal of Public Health, 96(9), 1629-1636. Retrieved online at http://www.ncbi.nlm.nih.gov.proxy.lib.csus.edu/pmc/articles/PMC1551957/.
  • Phares, T., Morrow, B., Lansky, A., Barfield, W., Prince, C., Marchi, K., Braveman, P., William SAMSHA, 2003
  • Shapiro, B. & Batshaw, M. (2013). Developmental Delay and Intellectual Disabilities. In M. L. Batshaw, N. J. Roizen, & G.R. Lotrecchiano, G.R. (Eds.), Children with disabilities. pp. 291-306. Baltimore: Paul H. Brooks Publishing Co.
  •   

— Sophie Siebach
Georgetown University College, 2015

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The Intersection of Poverty and Disability: What Does These Mean for Early Intervention

Early Childhood Interventions July 23, 2014
Percentage of women 15-50 with a birth in the past year who were in poverty
Image Source: Washington Post

Statistics show that poverty and disability are deeply intertwined. Nationally, 28 percent of children with disabilities fall below the Federal Poverty Level (FPL), compared to only 16 percent of children without disabilities (Emerson, 2007). This relationship is bidirectional, meaning that experiencing the environmental and psychosocial hazards that often accompany poverty increases the risk of disability, and the direct and indirect costs of having a disability increase the likelihood of falling into poverty, or at least of experiencing material hardship. These risk factors accumulate and interact over time; thus it is essential to intervene as early as possible in order to maximize positive outcomes for children with disabilities who have additional vulnerabilities such as being in poverty.

Research shows that the effectiveness of early intervention (EI) in such vulnerable populations is substantial (Long, 2013). The purpose of EI is to support families in their care of their children to facilitate the child’s participation and sense of membership in his or her family and community (Long, 2013). Many early interventionists follow the biomedical model, which focuses on managing or eradicating symptoms in “patients” rather than looking at a person and his or her capabilities and limitations within a social and environmental context (Halfon, Houtrow, Larson, & Newacheck, 2012). It would be far more beneficial, however, to approach children with disabilities and their families, especially those who experience additional vulnerabilities such as poverty, with a more family-centered approach. Before interacting with vulnerable families, early interventionists should consider their approach to early intervention, what they know about families that could influence their interactions, and what they should provide for them, given their needs and limitations.

Early interventionist’s use of an ecological approach will increase the likelihood that they will incorporate a systems perspective based on a strengths based, relationship, taking into account the life course of the child and family. Bronfenbrenner’s ecological systems approach posits that children develop in a system of nested environments, from their family and child care experiences (microsystems) to larger societal and cultural values and laws (macrosystem), and that these systems interact dynamically and change over time (Zajicek-Farber, 2013). From this perspective, the goal of intervention is not just to manage symptoms, but to improve the child’s social, physical, and psychological functioning within the contexts or environments he or she is expected to participate in. Using a relationship- and strengths-based approach means that early interventionists need to first develop a trusting, collaborative relationship with children and families, and to focus on their strengths (rather than limitations) that might be used as resources in helping to improve the child’s functioning and quality of life.

From a life course perspective, the goal of EI is to improve functioning and quality of life not just for children with disabilities in the moment, but to look ahead and anticipate needs across the lifespan so as children transition to and experience adulthood, they can maintain these improvements throughout their lives (Long, 2013). This is especially important when interacting with families because many have worries, fears, and questions about their children’s futures and what they will look like. Additionally, a lot of supports fall away as children with disabilities transition to adulthood, so it is important to look forward and prepare for the future very early on. Interacting with families in poverty in particular (who likely experience resource limitations and lack of information) from a life course approach could have further benefits for children because it impresses on parents the importance of each visit and each component of the intervention, and how every facet is necessary to lead to benefits for their children in the long term.

Before interacting with families in poverty or with other vulnerabilities, early interventionists should know what cultural beliefs, coping styles, priorities, strengths, and limitations families face on a regular basis. Cultural beliefs shape families’ relationships, behaviors, parenting practices, trust of professionals, and how they feel they can influence their children’s development. Early interventionists should pay particular attention to potential limitations and additional stressors that a family experiences. Strength-based interactions provide flexibility that may be necessary to provide the support needed to meet family needs.

When interacting with children and families with particular vulnerabilities, such as being in poverty, early interventionists should be particularly careful to be culturally sensitive and appropriate, sensitive to limitations, flexible, responsive, and understanding. All communications (both verbal and written) should be in the family’s preferred language, and should be in terms that are easy for families to understand and not riddled with technical jargon. Early interventionists should also be sure to share as much information as necessary to help families make informed decisions. Professionals should be sure to answer any questions that families have in a responsive, sensitive, and thorough way.

Best practice early intervention include establishing a collaborative partnership with families based on their strengths. Early intervention should empower families by informing them in a culturally appropriate and sensitive way and by modeling for them practices in which they can engage with their child on their own to promote his or her positive development. For vulnerable families in particular, early interventionists should be sure to connect them with community resources that will promote positive development, including transportation, health services, and assistance programs such as welfare, TANF, and WIC. It is especially important that professionals emphasize and facilitate the availability of these services because many families in poverty are not informed about programs for which they are eligible that could improve quality of life for themselves and their children. Professionals should also identify social supports that parents have and help them seek additional ones through support groups, mental health services, and other programs, because these parents are more likely to feel isolated and have mental health issues that could hinder the well-being of themselves and their children (Zajicek-Farber, 2013).  Connecting families with these resources augments moderating and protective factors for children with disabilities who are at high risk because of the interaction between poverty and disability.

Overall, early interventionists should be respectful of children and families with vulnerabilities (especially being in poverty, which is associated with myriad other risks) and their desires, priorities, goals, limitations, and ultimate decisions. They should be cognizant of how the way they approach, think about, and interact with vulnerable families influences the course of the early intervention and thus the outcomes of the child with disabilities. Thus, early interventionists should make concerted efforts provide services that are family-centered, focusing on the child, in context, and across his or her lifespan, and his or her family.

References

Emerson, E. (2007). Poverty and people with intellectual disabilities. Mental Retardation and  Developmental Disabilities Research Reviews, 13, 107-113.

Halfon, N., Houtrow, A., Larson, K., & Newacheck, P.W. (2012). The changing landscape of disability in childhood. The Future of Children, 22 (1), 13-42.

Long, T. (2013). Early Intervention.  In M. L. Batshaw, N. J. Roizen, & G.R. Lotrecchiano, G.R. (Eds.), Children with disabilities. pp. 547-557.   Baltimore: Paul H. Brooks Publishing Co.

Zajicek-Farber, M. (2013). Caring and Coping: Helping the Family of a Child with a Disability. In M. L. Batshaw, N. J. Roizen, & G.R. Lotrecchiano, G.R. (Eds.), Children with disabilities. pp. 757-672. Baltimore: Paul H. Brooks Publishing Co.  

Shannon Reilly
Georgetown University,
College, Class of 2015

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Practice Makes Perfect, But How?

Early Childhood Interventions June 13, 2014

How should young children practice new skills?  How much practice is enough?  How long should children practice?  Karen Adolph, PhD, a developmental psychologist at New York University,  has conducted numerous studies examining the development of locomotion in infants, how much practice is needed to become a competent walker, and what other factors influence the development of locomotion.  Recently, Dr. Adolph and her team observed infants as they played freely under caregivers’ supervision in a laboratory playroom.  The researchers compared the movement patterns of experienced crawlers and new walkers to gain insight into the development of locomotion.   The authors found that, as expected, walking patterns improve with age.  They also found that infants took about 14,000 steps a day, traveled the length of 46 football fields, and fell 100 times.  That’s a lot of practice and butt bumps!

They also found that the infants were not in constant motion.  Rather, they walked in short bursts that were separated by longer, stationary periods.  This short burst of movement finding is consistent with motor learning research in older children and adults.  Motor learning research has long suggested that effective practice conditions t allow for short practice periods with longer rest intervals.  Intermittent rest periods allow for the body to recover from fatigue, renew motivation, and to consolidate learning.

As early interventionists, we know that children need a lot of practice in order to learn new skills. BUT—–14, 000 steps a day are A LOT!  Does that surprise you?  How do you coach families to increase practice opportunities?  What questions do you ask families to find out how much a child is currently practicing a skill?  What strategies have you used to help families increase a child’s opportunities to practice a skill?

Adolph, K.E., Cole, W.G., Komati, M., et al. (2012). How do you learn to walk? Thousands of steps and dozens of falls per day, Psychological Science, 23, pp 1387-1394.

For more information on Dr. Adolph’s work visit her website:

http://psych.nyu.edu/adolph/index.php?page=home

–Jamie Holloway

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Facts about the Primary Service Provider (PSP) Model

Early Childhood Interventions May 13, 2014

A child is learning and developing new skills all the time.  In addition, all areas of development are intertwined.  Children do not learn motor skills in isolation of cognitive or communication skills in isolation.  As a child learns to crawl, he is also exploring his environment (cognitive).  He may also be responding to communication from mom as she says “come here.”  Each routine a child participates in allows for opportunities for growth across all areas of development.

One of the seven key principles of natural environment services is that the family’s priorities are best addressed by a single, primary provider who has support from a team and community resources.  In the PSP model, one primary provider works with the family and child on a regular, ongoing basis.  Other disciplinary providers who are needed support the primary provider through consultation in team meetings or during sessions with the family and primary provider.  Because routines involve skills across all developmental areas, it is unlikely that a single provider would address an isolated area of development when embedding strategies into the routine.  For example, the list below describes a few of the developmental skills that children are learning during the bath time routine.

Gross Motor—Practicing independent sitting

Cognition—Learning about the properties of water, color, movement, temperature, space, etc.

Fine Motor—Practicing reaching and grasping, building arm strength through splashing, pushing through water,

Self-care—Washing self

Communication—Learning body parts when caregiver is washing different areas

Social—Reciprocating interaction while playing with sibling or caregiver

Using routines-based intervention, the primary provider addresses all areas of development within daily routines.  Other providers are used as consultants.  For example, a developmental specialist looking at a child’s bath time routine might be very comfortable providing ideas about social games, water play, and communication but may want to consult with a physical therapist on the team about adaptive seating in the bath tub.  Or, if the primary provider was a physical therapist, she may be very comfortable giving strategies related to adaptive seating, water play, and social games, but may need to consult with a speech-language pathologist for ideas about increasing the child’s communication with mom.  The primary provider may change over time (as the family’s concerns move more toward communication, the PT may no longer be the appropriate primary provider).

There are many benefits to the PSP model.  Having one provider visit on a regular basis means the parent can focus on developing trust and rapport with one person.  This model also encourages teaming, thereby increasing coordination of services.  Gaps in communication (OT says “I thought speech was addressing feeding all this time”) and service overlaps (PT and OT are both addressing sitting balance) are decreased.    The model promotes consistent, collaborated service.  The primary provider is aware of all strategies that have been offered or tried and is able to update the team on what is working or not working.

The PSP model is based on information about the way children and adults learn.  It promotes communication between team members to help achieve IFSP outcomes and increase caregiver confidence and competence.

Why do you like this model?  If you have concerns about the model tell us why?  What evidence is available that supports or refutes any service delivery model?

 For more information:

Shelden ML & Rush DD (2013). The Early Intervention Teaming Handbook The primary service provider approach. Baltimore, MD:  Brookes Publishing. 

Woods J  (2004). Enhancing services in natural environments. NECTAC Conference Call. retrieved on March 21, 2013 from:  http://ectacenter.org/~calls/2004/partcsettings/woods.asp

Workgroup on Principles and Practices in Natural Environments (February, 2008) Seven key principles:  Looks like/doesn’t look like.  OSEP TA Community of Practice-Part C Settings.  http://www.nectac.org/topics/families/families.asp 

– Jamie Holloway

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