Student Spotlight

Calling For a Cultural Shift in Pediatric Healthcare: Promoting Integrated, Family-Centered Care

by Katelyn Malvese

One of the greatest flaws in the pediatric healthcare system is the absence of family-centered, integrated care, especially in the context of palliative and intensive care. Having a hospitalized child facing end-of-life and/or intensive care is a grueling, critical time during which caregivers need support. This population is at a greater risk for mental health concerns and crises, including but not limited to anxiety, depression, post-traumatic stress disorder, and post-traumatic symptoms (Ghavi et al., 2022; Salley et al., 2023). As a former child in this population, I can attest to the need for greater support of pediatric patients and their families in hospital settings. 

At fourteen, I lay in an ICU bed, recovering from the physical and emotional trauma I endured through multiple resuscitation attempts. While I had every medical gadget, specialist, and medication on-call, no doctor asked me if I was okay in any capacity (beyond physical) which depersonalized our relationships. There was no market for support groups, mental health counselors, or basic coping techniques. For the longest time, I tried to convince myself I was the only one that had this experience, but after immersing myself into a network of youth and families with complex medical circumstances, I saw how the pediatric healthcare system has failed so many.

My parents watched me with terrified eyes as I seized and nearly lost my life, left to sign consent forms and never receive hospital-referred support. In this moment, the family-centered approach was abandoned, and my parents were left feeling helpless in their parental role and helpless in a medical setting. Meyer et al. (2002) interviewed caregivers of children in the pediatric ICU to gain perspective on the end-of-life care their child and family received. One mother warned, “Do not fall into that detached type of working. Parents need to feel that people really care, not that it’s just a job. The people at the hospital who allowed themselves to have genuine feelings helped me the most.” Clearly, the current model of care is not working, with interactions often feeling more robotic with each set of standard screening questions and timed visits which often are limited to fewer than five face-to-face minutes to maximize productivity.

 It often feels like healthcare has become increasingly depersonalized and that healthcare providers are being denied opportunities to provide the quality, personalized care and treatment they are capable of. The current system of most American pediatric hospitals needs to transform into an integrated, family-centered healthcare model which values holistic treatment and compassion towards both families and employees. Pediatric medicine must work towards an integrated, family-centered model of care where, ideally, the hospital could provide on-site psychosocial care and support for caregivers to overcome common barriers to accessing mental health support during a child’s hospitalization (i.e., connecting with volunteers, Child Life, or other staff to supervise during interventions). Professionals need to bring back compassion, as compassion is at the root of quality care, the center of change, and the future integrated, family-centered pediatric hospital systems. 

References

Ghavi, A., Hassankhani, H., Powers, K., Arshadi-Bostanabad, M., Namdar-Areshtanab, H., & Heidarzadeh, M. (2022). Parental support needs during pediatric resuscitation: A systematic review. International Emergency Nursing, 63, 101173.

Meyer, E. C., Burns, J. P., Griffith, J. L., & Truog, R. D. (2002). Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical care medicine, 30(1), 226-231.

Salley, C. G., Axelrad, M., Fischer, E., & Steuer, K. B. (2023). But parents need help! Pathways to caregiver mental health care in pediatric hospital settings. Palliative & Supportive Care, 21(2), 347-353.

Katelyn Malvese is a senior at Tufts University studying Psychology and Child Study & Human Development. She plans to stay at Eliot-Pearson for her masters in Child Study & Human Development with a concentration in Clinical-Developmental Health and Psychology.  
Community Blog

Where were you in camp? Japanese children interned during WWII.

By Martha Pott

“Where were you in camp?” I was standing next to my friend, Hiroshi (David) Yamamoto, who had just been introduced to someone who was also Japanese American. They weren’t talking about summer camp. Hiroshi was four years old when his family was interned at Heart Mountain Relocation Center in Wyoming, where he lived with his parents and two older sisters until he was eight.

After Pearl Harbor was bombed on December 7, 1941, President Roosevelt signed Executive Order 9066 that incarcerated people of Japanese descent in internment camps in the western US in an effort to “curb potential Japanese espionage.” Those who were identified as at least 1/16th Japanese were given 6 days to dispose of their property and possessions. In fact, there were no charges ever brought against Japanese Americans for espionage or sabotage against the United States. Most of those interned were US citizens. Over half of those interned were children. In 1980, the US government established the Commission on Wartime Relocation and Internment of Civilians (CWRIC), which concluded that Executive Order 9066 “was not justified by military necessity” but was driven by “race prejudice, war hysteria, and failure of political leadership.”

This photo shows the Mochida family in Hayward, California, waiting for a bus that will “evacuate” them to an “assembly center” and, eventually, a “relocation center. “The US government used identification tags “to aid in keeping the family unit intact during all phases of evacuation.” The father, Mr. Mochida, ran a nursery with five greenhouses, raising snapdragons and sweet peas.This photo shows the Mochida family in Hayward, California, waiting for a bus that will “evacuate” them to an “assembly center” and, eventually, a “relocation center. “The US government used identification tags “to aid in keeping the family unit intact during all phases of evacuation.” The father, Mr. Mochida, ran a nursery with five greenhouses, raising snapdragons and sweet peas.

David was the youngest child when he and his family were forced to leave their strawberry farm and home in San Jose, California and were sent to Heart Mountain, Wyoming, named for the mountain in the distance shaped like a heart. Originally part of the Apsáalooke (Crow) tribe homelands, the Heart Mountain Relocation Center was one of 10 camps that incarcerated 120,000 Japanese Americans in the west. Heart Mountain held 11,000. David’s family lived in drafty barracks surrounded by tall barbed-wire fences patrolled by armed military police. David and I visited Heart Mountain in 1981 on a camping trip where we found the barracks and laundry still standing, and a US historical marker indicating that people were “loosely confined” there during the war, that the camp was “equipped with modern waterworks and sewer system and a modern hospital and dental clinic,” and that “first rate schooling was provided….” This isn’t the way many remember it.

I recently wrote to David to ask him to reflect on that experience.  He first told me that most now use the term “incarceration center” rather than “relocation camp” or “evacuation camp.” Then, he wrote: “Our family splintered under the weight of incarceration.  My mother spent much of the time in the hospital. This necessitated my 12-year-old sister to be the surrogate mother to two younger siblings, a responsibility she greatly resented.   My father left the family to work on the railroad to raise funds…. Unknowingly I internalized all the stress, struggles and angst arising from how our family reacted to the incarceration.… [I]t took me the vast majority of my adulthood to understand and address unhealthy and negative consequences that subtly and not so subtly defined me.” David went on to say, “Not all is/was negative. Because of my background I am sensitive to racial and ethnic injustice and discrimination.”

Since David and I visited Heart Mountain, some things have changed. A new historical marker indicates more accurately what really happened there (see photo below). A Heart Mountain Wyoming Foundation has been established with a mission to preserve and memorialize the site and the “stories that symbolize the fragility of democracy,” to educate the public, and to support the preservation of liberty and civil rights for all Americans today.

But some things haven’t changed. The Center for the Study of Hate and Extremism reports that anti-Asian hate crime in the largest cities and counties in the US rose by 164% in the first quarter of 2021 compared to the same time period in 2020 (Pew Research Center). In response, President Biden signed into law the bipartisan COVID-19 Hate Crimes Act. Among many goals, the new initiative is charged with advancing equity, justice and opportunity for Asian American and Native Hawaiian Pacific Island communities with a comprehensive federal response to the rise of anti-Asian bias and violence. February 19 was a Day of Remembrance of Executive Order 9066.

Martha Pott is a faculty member in the Eliot-Pearson Department of Child Study & Human Development.

Community Blog

Rekindling the Fire: Ideas for Action to Advance E-P’s DEIJ Work

By Matt Gee

It has been over a year and half since George Floyd was murdered by a white police officer. Many called the summer of 2020 a racial reckoning for the US, but despite all that energy, what has actually changed? Yes, small gains have been made. From 2015-2020, the number of people with the title “head of diversity” has increased by 104%. Some cities, including Boston, have proposed cuts to police budgets and reallocation to public health and housing services (though, there is some skepticism). However, there is just as much evidence of stagnation and even slide back. A study by Creative Investment Research found that of the $50 billion that companies pledged to “racial equity,” only $250 million has been spent on or committed to actual programs. Furthermore, a national study on white support for the Black Lives Matter (BLM) Movement found that despite a surge in support during the summer of 2020, one year later, support for BLM has not only fallen off, it has actually dropped below the level it started at.

Despite the bleak national scene, the situation at Eliot-Pearson (E-P) is a little better. The department has made strides towards Diversity, Equity, Inclusion, and Justice (DEIJ). A DEIJ faculty coordinator position has been created; faculty have been asked to review their courses with an eye toward DEIJ in consultation with Tufts’ Center for the Enhancement of Learning and Teaching; anti-racism colloquia have been had. However, while these actions are good first steps, they are far from sufficient if racial equity and justice truly are our goals. Merely educating people about racism without honest introspection and bold reforms will not lead to the dismantling of racist structures that perpetuate racial inequality. What we need is structural and cultural transformation, not tinkering around the edges.

Below, I present a few ideas that I gleaned from three discussions on anti-racism in academia that took place in the 2021 Society for Research in Child Development Biennial conference. I have organized them under broad actions called for by Outley and Blyth (2020). Many other valuable ideas were shared at the conference, but I chose to highlight these because they were mentioned in all three sessions and because they are programmatic/structural in nature.

Encourage policies to foster interactive learning communities that promote cultural humility (Outley & Blythe, 2020, p. 10)

Action 1: Create third spaces (outside of classes and recitations) for people to do “the work” of deconstructing racism. For white students, faculty, and staff, this might look like learning about white supremacy and examining the ways that they perpetuate it in their work and interactions with others. An essential component of these spaces should be accountability systems for taking anti-racist action beyond just further reading and discussion. For students, faculty, and staff of color, third spaces may serve as a place for commiseration and/or unlearning white supremacy. Instead of treating these spaces as “add-ons,” they could be built into program requirements. For example, two hours of doctoral RA hours could be devoted to participating in these spaces each month, or faculty could integrate these spaces into their course assignments. 

Actively develop a pipeline of diverse scholars (Outley & Blythe, 2020, p. 9)

Action 2: Reform how we evaluate students who are looking for admission into our program, assistantships in our labs, recommendations for fellowships, etc. As gatekeepers of opportunity, we have the power to expand what is deemed valuable. To do so, I urge us to take a hard look at what it currently means to be a “good” and “successful” student and what it means for a student to “fit” in our department. One university in the Midwest has shifted their approach to graduate admissions. Instead of talking about the weaknesses of applicants, they start with the assumption that every student can be successful in their program. Then, to select students, they ask: “Where would our department fail this student?” “Where could we be most successful in supporting this student?” In doing so, assets are centered instead of deficits.

Reexamine past and current research narratives (Outley & Blythe, 2020, p. 7)

Action 3: Create a requirement that every student who graduates from E-P must take at least one class on critical race theory, and/or require that every E-P class has an anti-racist lens. An understanding of power and privilege, which profoundly shape our perspective and the lives of the youth and families we hope to serve, should be valued as much as research methods and statistics.

I know that any one of these actions will take considerable effort, but if we fail to act, we will certainly perpetuate the same systems that led to Mr. Floyd’s murder. I hope that this blog post sparks bold ideas and rekindles the fire of racial justice action we are trying to keep alive. Now, let’s get (back) to work.

Matt Gee is a doctoral student in E-P, a research assistant in the Development of Identity and Community Engagement Lab, and a member of the student DEIB committee. If anyone would like to discuss more or comment on the work that E-P is taking along these lines, he would be happy to be in conversation. The views are those of the author.

Community Blog

Starting Young: Reducing Overrepresentation of Native Americans in the Justice System

By Erin Walenta, Kaila Caffey, Catherine Quinn, Hanna Anderson & Jasmairy Marte

Native American people are the second most overrepresented population in the US justice system. Native Americans are incarcerated in state and federal prisons at 38% above the national average, and on any given day, 1 in 25 Native Americans over the age of 18 is involved in the judicial system in some capacity. Clearly, something needs to change.

As a whole, Native Americans are a very young racial group. 29% of Native American people living in the United States are under the age of 18. As such, juvenile justice issues are Native American justice issues; in order for the overrepresentation of Native American people in the justice system to be ameliorated, a major focus needs to be paid to reforming the juvenile justice system for Native American youth.

One of the primary ways to do this is to promote cooperation between state juvenile courts and tribal courts. The tribal court system has the potential to be truly transformative for Native American justice issues in this country. It focuses on restorative justice rather than punitive justice and, in doing so, prevents people who have committed minor offenses from becoming unnecessarily incarcerated.

Currently, under Public Law 280, there are six states in which those living on tribal land are under the authority of state governments: California, Nebraska, Alaska, Oregon, Minnesota, and Wisconsin. In these states, there is typically a level of cooperation between the tribal government and the state government when it comes to ensuring justice is served. Judge Abby Abinanti, a judge for the Yurok Tribal Justice System, said that this often comes in the form of probation conditions. A person is sentenced to probation in state court, but one of their probationary terms is participation in tribal court. Judge Abinanti states that there is no such intertwining of the youth system and expressed how impactful such a thing would be in keeping Native American youth out of detention centers. As such, the suggestion to promote cooperation between the state juvenile justice system and the tribal justice system was born.

To some, this suggestion may seem overly specific. It would only really impact the Native American youth populations in these six states, leaving the juvenile justice policies in 44 other states untouched. However, it is in these states where it counts the most, given that Alaska, California, and Oregon are among the ten states with the highest Native American population.

This country and its justice system—not to mention its health care, foster care, and school systems—have failed the vast majority of Native American people living on reservations, and failed them terribly. There is no denying that. However, there are steps that can be taken to reduce the amount of over-policing, incarceration, and unnecessary separation of families in these communities. Focusing on juvenile justice is one of the most impactful ways to do this.

Works Cited

“Demographics.” National Congress of American Indians, National Congress of American Indians, 1 June 2020, www.ncai.org/about-tribes/demographics.

Golding, D., & Nesbitt, L. (2017). Tribal Justice . Docuseek. https://docuseek2.com/bf-tj.

“Native Lives Matter.” Lakota People’s Law Project, Lakota People’s Law Project, Feb. 2015, lakota-prod.s3-us-west-2.amazonaws.com/uploads/Native-Lives-Matter-PDF.pdf.

“Tribal Population.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 21 Dec. 2018, www.cdc.gov/tribal/tribes-organizations-health/tribes/state-population.html.

The authors were part of a task force investigating Native Americans and the juvenile justice system as part of a spring 2021 Eliot-Pearson course, “Plugging the Preschool-to-Prison Pipeline: How Incarceration Affects Children, Youth & Families,” taught by Dr. Martha Pott.

Community Blog

Putting Out Wildfires: Consequences of a Staffing Drought in DCF Programs

by Amanda Koffink

 This summer I had the opportunity to work as a Residential Counselor in two different DCF-funded programs.  My first position was at a Short-Term Assessment and Rapid Reintegration (STARR) program. STARR Programs typically care for children upon their initial placement into custody of DCF, especially when children arrive under emergency circumstances. My second position was at the Home for Little Wanderers Waltham House. Waltham House is a long-term group home that specifically serves LGBTQ+ adolescents in DCF custody, typically between the ages of 14 and 18 years old. Many of the Waltham House residents are there because they had experienced homophobia and transphobia in foster homes and other group home settings when entering DCF custody. Additionally, many of the residents in this particular program entered DCF custody due to their original guardians disowning them after they came out as LGBTQ+.

As the end of my first day at STARR was approaching, a girl came up to me and said:

“Are you gonna leave us? Did we already scare you away?”

“No?” I replied with confusion

“Promise?” She asked.

“Yeah, why do you say that?” I asked.

“Well, every new staff member leaves us.”

As evidenced by the girl’s comments, unconditional love will always seem to be an oxymoron for children in custody of DCF programs, as their favorite staff go home at night, quit without a two-weeks’ notice, and never return.

A Journey Through DCF: From Emergency Removal to Permanency Planning

The Massachusetts Department of Children and Families (DCF) serves children aged 0 to 18, removing them from abusive and neglectful homes. When a caller reports to the DCF hotline that they suspect neglect or abuse of a child, the situation is investigated to determine if the child is in immediate danger. If this is determined to be the case, an investigation begins within two hours and the first home visit is conducted within 24 hours of the reported abuse (Mass. Gen. Laws ch. 119, § Section 51b, 2021). In these emergency situations, from what I have witnessed, the child is often removed immediately and sent to a STARR program.

 Children generally remain in STARR for approximately 45 days until DCF determines a more permanent placement for them. The STARR Program is in a sense like Limbo, as the child awaits their fate. Like in Limbo, the child’s behavior while in the STARR program can play a role in determining where the child ends up afterwards.

DCF has been struggling to recruit and retain enough foster parents to keep up with the increasing rate of children being placed in the system. For this reason, following their initial placement in STARR programs, children are often transferred into long-term group home settings.

Putting Out Wildfires: Consequences of a Staffing Drought in DCF Programs

At the STAAR program, a child once proudly said to me “Wow, the police haven’t come in a long time.”  It had been three weeks since they last came. They almost had to be called the previous day too, when she got into a physical altercation with another child because she did not want to watch a certain movie. Thankfully, we had enough staff to restrain her without police presence.  However, if we had been short staffed, she could have gone into custody of DYS (“juvie”) because of a movie. A lack of staffing and failure to de-escalate children before criminal acts occur appears to be one of the main contributors to the DCF-to-juvie pipeline. The Walpole police department reports that a DCF program in their town makes around 270 calls to the police in a given year (Basu, 2020; Donnelly & Moser, 2018). As documented by the non-profit organization Citizens for Juvenile Justice (2018) “72% of the overall committed population had prior DCF involvement—85% of girls and 70% of boys” (p. 10). DCF programs face a staffing drought and thus, a program so deprived of stability that even a conflict as minute as a flame on a birthday candle might just spark the next wildfire.

My bosses at Waltham House, on the other hand, appeared more cautious about accepting anyone into the program who had a history of being violent towards others. In comparison to programs like STARR, who averaged hundreds of calls per year to the police, Waltham House had not used restraints on children in five years, and rarely had calls to the police. However, the staffing shortage was still extremely present, and youth were impacted in a variety of other ways.

Generally, when staff constantly come and go, youth are at risk of leaving the system without one consistent positive adult mentor in their lives and with the firmly held belief that they are innately unlovable.  The children in these programs, at times, appeared to be blaming themselves for the staffing issue, when it was ultimately a systemic issue, entirely out of their control.

Staff are given an extremely strict set of guidelines to follow and face the threat of severe legal ramifications for any shortcoming. Staff often receive minimum wage pay, are mandated for 16-hour shifts, at times lack sufficient training, and must consistently navigate communication mishaps with coworkers.

With these conditions, other job opportunities can seem more and more appealing. This is likely why DCF programs are constantly scrambling for staff. If they have staff who are paid enough to be there, and who have the commitment to stay, they can provide the youth with at least a glimpse of unconditional love, which a lot of these staff members truly have for the kids.

References

Basu, M. (2020, December 15). Children in DCF custody at 2 Walpole homes will be removed immediately after COVID-19 clusters. Boston 25 News. https://www.boston25news.com/news/health/children-dcf-custody-2-walpole-homes-will-be-removed-immediately-after-covid-19-clusters/6BYLX4LIEFA53EHE4ELAG7U6WI/

Citizens for Juvenile Justice. (2018, July). Shutting Down the Trauma to Prison Pipeline. cfjj.org. https://static1.squarespace.com/static/58ea378e414fb5fae5ba06c7/t/5b4761732b6a28f6ea5e94c1/1531404665230/FINAL+TraumaToPrisonReport.pdf

Donnelly, A. & Moser, D. (2018, March 7). Walpole School Shuts Down After Years of Problems. NBC 10 Boston. https://www.nbcboston.com/news/local/walpole-school-shuts-down-after-years-of-problems/99081/

Mass. Gen. Laws ch 119 § Section 51b (2021). https://malegislature.gov/laws/generallaws/parti/titlexvii/chapter119/section51b

Amanda Koffink is a Tufts senior majoring in Child Study & Human Development.

Community Blog

Integrating Academic Learning with Service Learning in an Undergraduate Class

By Katelyn Malvese, Lola Nedic, & Sarah Scharlin Ben-Hamoo

“Resilience in Development”, CSHD 67, taught by Professor Ann Easterbrooks highlights the capacity of individuals and families to thrive in the context of adversity. Professor Easterbrooks emphasizes the importance of support networks and community resources as building blocks in fostering resilience among children, youth, and families. As part of the course, students do 20 hours of service learning in community organizations. An important feature of this requirement is to connect the volunteer experiences to the framework and principles of the course. 

Food Insecurity:

Four students in the class volunteered to tackle food insecurity in the Boston area. They worked with the “Just Eats” program, which is a part of Food for Free, an organization that provides food for local communities, or with “Building Audacity”. Food for Free, for example, partners with local grocery stores to acquire fresh, unsold food, eliminating food waste and providing food to families. Volunteers package 2000-3000 boxes of food each week. Students working with Food for Free and Building Audacity noted that food security is incredibly important in fostering resilience. They all noted that their work with organizations that limit food waste and provide food to those in need was extremely fulfilling personally.

Research and Outreach: 

Other students worked behind the scenes of programs that foster resilience. Some worked with UU Urban Ministry (UUUM), based in Roxbury and grounded in a social justice framework. Their programs include Roxbury Youth Programs, an after-school program for youth; Renewal House, a home and shelter for families who are survivors of domestic violence; United Souls, a program supporting men facing re-entry and other issues within urban life; and Stand High/Stand United, a program for elementary school-aged children. Together, the Tufts students produced a logic model and survey to gauge where the programs are thriving and where they can improve, and they presented their work to the organization’s board. In one semester, these students worked to create a lasting impact on UUUM’s programs, and the hundreds of people who benefit from them. 

Several students worked with organizations promoting health and wellness. One volunteered with Peer Health Exchange (PHE), a national organization that educates high schoolers about mental and sexual health, and substance abuse; topics that are often neglected in high school curriculums. Despite the many challenges that arise when trying to connect with youth via a virtual format during a pandemic, the program connects with students to discuss the importance of mental health as a protective factor to students in promoting resilience. Other students worked with the HOPE (Healthy Outcomes from Positive Experiences) Project, a program at Tufts University School of Medicine that highlights the power of positive childhood experiences in fostering resilience. These students worked on a CDC-sponsored study of the effects of Covid-19 on American households, trying to understand what helped foster resilience during the pandemic. 

Another student worked with MassVote to foster resilience in the Black community. The organization focuses on voter suppression. For example, a current project is offering to help people register to vote at COVID vaccination sites. This has created trust between the community, the medical community, and in the voting process. 

Finally, another pair of students worked with a boy studying for his Bar Mitzvah who, because of severe learning disabilities, struggled to learn in a typical Hebrew school setting.  The synagogue, with the help of these two students, has provided him a safe space to learn and grow, and build confidence despite many family adversities. This is a reciprocal experience of resilience development, since their tutoring has helped him build learning skills and confidence in his abilities, and his hard work and growth has provided personal growth for these two students.  

Conclusions

Students were given the opportunity to learn about resilience in local communities, which has given them additional insight into the course curriculum.  While some service focused on fostering resilience in individuals, others looked more broadly at the entire community.  On every scale, focusing on a resilience model as opposed to a deficit model is beneficial. These programs were able to help communities both directly and indirectly, by giving them essential resources, building confidence, or empowering people to fight against racist systems. This experience has given the students the opportunity to grow as individuals, and to foster resilience within themselves and our communities, regardless of limitations put on by a global pandemic.


Katelyn Malvese (left), Lola Nedic (center), & Sarah Scharlin Ben-Hamoo (right) are undergraduates at Tufts University.

Community Blog

Promoting Equity for Autistic Children and Teens during Covid

By Leah Kirsch and Abby Donaghue

Since the Individuals with Disabilities Education Act (IDEA) was signed into law in 1975, children with disabilities have been guaranteed access to a free and appropriate public education. This policy was a historical breakthrough in the rights of disabled and neurodivergent Americans, including those with Autism Spectrum Disorder (ASD), quite literally opening the door to public schools for disabled students. For most affected students, IDEA is enforced by providing an Individualized Education Plan (IEP) guaranteeing service access and curriculum accommodations.

Under the circumstances of COVID-19, special education programs governed by IDEA have faced unforeseen challenges in adapting to remote learning. Online education was never considered when IDEA was written, and no amendment since has addressed this learning environment. Many of the services and accommodations guaranteed in students’ IEPs have subsequently been rendered inaccessible. While some services are weakened in a virtual format, others are impossible to provide or assess online. This is especially true of the social opportunities that are crucial to developing social and communicative skills for autistic students. 

The transition into remote learning has also brought with it immense stress for youth with ASD and their families. The disruption in daily routines has been significantly distressing, as the consistency and structure that many autistic individuals thrive with have been largely lost. Parents have been tasked with recreating these routines while also taking on the role of teacher, speech-language pathologist, occupational therapist, counselor, and more. It’s an enormous challenge for many families to provide these services – without training –  while balancing parenting and work responsibilities. Hardest hit have been low-income households, which are disproportionately families of color that have taken on the brunt of the economic burden from the pandemic. Parents performing underpaid essential work don’t have the opportunity to care for their children while working from home. Non-English speaking parents face additional barriers to providing these services to their children, as they can’t provide the instruction typical of English-speaking schools.

We also recognize that schools aren’t entirely to blame for the hardships families have been facing. In-person activities have been halted for the safety of everyone involved, and teachers are being stretched incredibly thin trying to adapt to entirely new instructional modalities. Still, there is room for more to be done to help autistic students and their families. 

At the Crehan Lab, we are currently conducting a study on IEP satisfaction and equity across racial, ethnic, and linguistic backgrounds. Schools have the opportunity to learn so much from families’ experiences with remote learning: what worked, what didn’t, and ideas for moving forward. Yet all too often, parent concerns aren’t addressed in their child’s IEP objectives. As we leave remote learning behind, it’s crucial that schools listen to parent perspectives and take the necessary steps to support students through the transition back to in-person learning. For more information on best supporting children with ASD in returning to school, check out the following resources: 

Indiana Resource Center for Autism      

UC Davis News Room


Leah Kirsch (left) and Abby Donaghue (right) are undergraduate research assistants at the Crehan Lab, studying social development and access to resources in the context of Autism Spectrum Disorder. Abby is a sophomore double majoring in Biopsychology and Child Study & Human Development. Leah is a junior double majoring in Cognitive & Brain Science and Child Study & Human Development. 

Community Blog

Unconditional Positive Regard

By Emily H. Carroll

I don’t believe in the concept of a bad child.  As a therapeutic mentor, I met children who set fires, physically and emotionally harmed others, ran away, and struggled with honesty, and not one bad apple graced my presence. One client, Joey*, attempted to steal a fidget spinner during our session. His hands fumbled with the small, precious gadget, attempting to conceal it in his wadded-up jacket.  Judy* threatened to fatally harm another child. In my work with Joey, Judy, and children more generally, I often consider the notion of unconditional positive regard and I have come to believe that such acceptance holds a special kind of power to build and transform.

Unconditional positive regard is that feeling you get around someone with whom you feel safe to just be.  This person could witness you in your most selfish moment and they would still look at you with kind, unassuming eyes, even as they hold you accountable.  It may sound ironic that a child lighting fires around the house needs some loving energy, but when we consider what we teach a person when we blast them with shame and withhold our love, we find that we are punishing one kind of violence with another kind of violence, passing on the plague of hurt. 

In the face of unsafe behavior, fear, anger, sadness, and disgust serve as natural, protective human responses. Too often, however, we let this warranted emotional response simmer and morph into vilification of the person, or in this case, child, who does harm.  I believe that the process of labeling a child bad and wrong nurtures the roots of violence. When we see a child as a monster, even if unconsciously or subtly, we close a door to effective connection, change, and growth. We miss an opportunity to understand the pain fueling the behavior.   

I have found that connecting to and validating the child’s pain, as well as seeing them with eyes that mirror their goodness, has opened up powerful doors to positive therapeutic work.  I set my intention upon adding and modeling positive connection and empathy to the child as opposed to defining them by the actions I don’t agree with. I endeavor to show up to each newfound delight, disappointment, and fear as an attentive, warm witness. “I see you, I hear you,” I say with my body, face, words, voice, and actions. With Joey, it became about witnessing and validating the injustice of some kids having more than others. For Judy, I validated the theme of double standards and desire for interpersonal connection. When I create accepting space for a child’s feelings, I nourish their own ability to hold themselves in positive regard.     

Even saying “no,” or perhaps especially saying “no” serves as an important opportunity to teach a child that a limit can exist alongside positive regard. For Judy, validating her anger came with the important caveat that hurting others doesn’t help. Limits and boundaries can become a means of expressing care and valuing wellbeing, as opposed to a means of exerting power and control. When I remember to maintain this mindset, the work becomes seamless and growth takes hold.    

Never underestimate the power of unconditional positive regard. We can model a different way of being, a different way of responding to pain that pumps the breaks on violence. An adult’s welcoming presence and shame-free limit-setting can lay the foundation for a child to grow their own internal source of acceptance. Ironically, acceptance can serve as the catalyst for change.    

*Names and identifying information have been altered to protect the client’s confidentiality.


I gain a great deal of daily inspiration and influence from Sarah Blondin’s work and I love to spread her magic. Find her meditations on her podcast, “Live Awake,” or the app, “Insight Timer.” She also has a book called “Heart Minded, How to Hold Yourself and Others in Love.”


Emily earned her BA in Child Study and Human Development from Eliot-Pearson in 2018 and since then, she has worked as a nanny, therapeutic mentor, and in-home therapy team member. Emily will begin a Master of Social Work degree in September, 2021 at Boston College.  

Community Blog

I Wish I Were Light Skinned Like You: Colorism in the U.S. and Latin America 

By Keshia Harris, Ph.D.

Have you ever wished you were another color or race? Have you ever wished more people found you attractive or that you didn’t have to fight so hard to be valued by society? First, I want to say, this is normal. Second, I want to assure you that you can have this thought at some point in your life and STILL develop a profound sense of pride in your race and skin color. 

If colorism is a concept that is completely foreign to you or not at all a part of your social experience, I’ll take the liberty to explain. 

Colorism in the U.S.

During my master’s degree training in mental health counseling at Columbia University Teachers College, I interned as a youth development counselor at the Harlem Educational Activities Fund (HEAF). I’ll always remember the words of my 6th grade client, “I wish I were light skinned like you”. A gorgeous Jamaican American girl with espresso brown skin and thick curly hair, she longed so much to be as popular as her Dominican American friends with light brown skin and hair down their backs. 

I was shocked by her comment. As the darkest woman in my household and often the darkest person in my friend groups, I was keenly aware of where I fell on the skin color spectrum. No one, and I mean NO ONE, had ever referred to me as light skinned. 

My next reaction was deep remorse. How was it that such a majestic young queen could possibly see herself as ugly? Through introspective beauty activities such as having my client identify all of the Black female celebrities she admired (Beyoncé, Rihanna, etc.), we realized that she didn’t actually see me as light skinned. Rather, she saw me as pretty. In one of our final sessions, I put my arm next to hers so she could see the similarities in our skin tone. 

Colorism in Brazil and Colombia 

Unfortunately, the effects of colorism determine the life outcomes of communities of color far beyond popularity and far beyond our borders. My experience with the 6th grade student along with teaching English in Latin America inspired me to pursue doctoral research on colorism in educational outcomes of Black and Indigenous adolescents in Brazil and Colombia.  From 2014-2017, I studied how socioeconomic status, experiences of discrimination, and postsecondary goals varied by skin tone for high school seniors in Salvador, Brazil and Cartagena, Colombia. I wasn’t surprised to find that participants of darker skin tones reported the lowest socioeconomic status and the highest rates of discrimination.  On the other hand, postsecondary goals did not vary by skin tone.  

In other words, there were no differences in academic aspirations between light, medium, and dark skinned adolescents.  Oftentimes, researchers and policymakers place the blame of achievement and socioeconomic gaps on the individual.  However, the experiences of these young people clearly illustrate the atrocities of systemic inequalities, providing insight into differential life outcomes based on the lightness or darkness of one’s skin. Their voices speak to the reality that everyone should have a fair opportunity regardless of skin color.

Keshia L. Harris, Ph.D. is a research scientist at the Center on the Ecology of Early Development (CEED) at Boston University Wheelock College of Education and Human Development.  In March 2021, Dr. Harris presented her lecture titled, A social Justice Approach to Colorism in Education for Professor Richard Lerner’s Positive Youth Development and Social Justice Series at Tufts University Eliot-Pearson Department of Child Study and Human Development. 

Faculty Posts

Protect Incarcerated Youth During the Pandemic

By Martha Pott, Ph.D.

COVID-19 has infected almost 4,000 youth in juvenile justice facilities since the pandemic started. What kind of facilities are these? Do juveniles need to be in them? Some are residential treatment centers for children with behavioral and emotional problems. Some are detention centers where youth who have been arrested or detained are held waiting a hearing or trial. Some are lock-ups for youth who have committed crimes. Staff who work in these centers are also at great risk; four of them have died of the virus. Most states have tried to limit the spread of the virus. A primary way they do this is by restricting family visits. This is traumatic for incarcerated youth who may be as young as 6 or 7. 

In some states, facilities have managed the spread of COVID-19 by putting youth into separate quarantined areas that are essentially solitary confinement. Although many states prohibit solitary for youth, under the pandemic, health authorities have essentially turned to it as a necessary response. Solitary confinement can be traumatic for youth and contribute to depression, anxiety, and risk of self-harm; over half of youth who commit suicide inside facilities are in solitary confinement. 

It may surprise you to know that about 70% of youth are incarcerated for non-violent offenses. And many youths are in detention centers because they have been accused of an offense but a later hearing finds that they are innocent; thus, they’ve been detained and exposed to COVID for no reason at all in terms of public safety. 

The good news is that there has been a huge decline in detained youth over the past two decades due to juvenile justice reform, by some counts, a 65% reduction from 2000 to 2018. But policies under COVID threaten to reverse that trend. 

Some states are releasing youth. The Annie E. Casey Foundation’s Juvenile Detention Alternative Initiative (JDAI) oversees detention facilities. They have found that in some states and counties far fewer youth have been admitted and detained, e.g., Fresno County in California. But this is not true in most places. 

There are alternatives that keep the public safe. Here are some recommendations taken from three sources: The Sentencing Project, The Annie E. Casey Foundation’s Juvenile Detention Alternatives Initiative (JDAI), and the Center for Children’s Law and Policy. 

  • Only admit youths who pose an immediate and serious threat to their communities.
  • Release youth immediately who won’t pose such a threat and can be safely treated in their homes or home communities.
  • Make it possible for detained youths and families to communicate freely and often. 
  • Protect youth from COVID during monitoring or parole by following health guidelines for distance and mask-wearing; for example, use phone or zooms for parole monitoring. 
  • States should publish their COVID numbers in youth facilities (many of these are kept secret).

COVID-19 Diagnoses in Juvenile Facilities: Known Cases
3,753 youth as of February 22, 2021.

Sources:

The Annie E. Casey Foundation: https://www.aecf.org

The Sentencing Project: https://www.sentencingproject.org

Stop Solitary for Kids: https://www.stopsolitaryforkids.org

Martha Pott is a faculty member in the Eliot-Pearson Department of Child Study & Human Development. This spring she teaches a course titled: Plugging the Preschool-to-Prison Pipeline: How Incarceration Affects Children, Youth & Families.