Are We Prepared to Have a More Diverse Population in Our Educational System?: The Journey of Korean Families to America for Special Education

By Casey Kim, Special Education Teacher, UIUC Doctoral student and LEND Trainee 

Korean society has long held a deep respect for the pursuit of education, serving as a cornerstone of its reputation as an educational powerhouse. However, when it comes to special education, opinions in Korea are divided. In a culture where societal judgment (Si-sun in Korean) is significant, having a child with disabilities was once viewed as a familial 'shame.' This mindset is changing, with parents now investing heavily in supporting their children with disabilities. For instance, ABA therapy, which is not covered by medical insurance in Korea, can cost parents $80-$100 per 40-minute session, in addition to the expenses for speech therapy, occupational therapy, and physical therapy.

Many Korean parents are now turning their radar towards America, desperately seeking a new dream: high-quality, affordable special education for their children with disabilities.

The Move to America

The migration of Korean families to America, particularly those with children with disabilities, is a story of resilience and hope. They seek a more inclusive and supportive educational system, starkly contrasting what many find in their home country.

Challenges Faced by Korean Immigrant Parents

Despite the advantages of the U.S. system, Korean immigrant parents encounter numerous barriers, including language differences, cultural disparities, and a lack of sufficient information, leading to frustration and a sense of marginalization. A study focusing on Korean mothers raising children with disabilities in the U.S. emphasized their resilience and the need for cultural sensitivity in providing support (Lee et al., 2023).

The Way Forward

Bridging the gap between Korean immigrant families and the U.S. special education system requires several measures. Qualified interpreter services and systemic, sustained support are crucial, as is a deep understanding of cultural differences by educators and professionals.

Conclusion

The journey of Korean families to America in search of better educational opportunities for their children with disabilities demonstrates their dedication and the universal desire for inclusive, high-quality education. Addressing the challenges these families face is a step towards a more equitable and supportive educational environment for all.

For more stories of immigrant families, read here: 

• Cummings, K. P., & Hardin, B. J. (2017). Navigating disability and related services: Stories of immigrant families. Early Child Development and Care, 187(1), 115-127.

• Kim, J. (2013). Unheard Voices: Korean Immigrant Mothers' Experiences with the United States Special Education System. ProQuest LLC.

• Kim, J., & Kim, S. (2017). Positioning of Korean immigrant mothers of children with disabilities. International Journal of Multicultural Education, 19(3), 41-64.

• Lee, J., Kim, C., Yoon, C., & Chung, M. (2023). Exploring culture and challenging behaviors: Voices from Korean caregivers of young children with autism. Education and Treatment of Children.

• Yan, M. C., Kim, S., Kang, H. J., & Wilkerson, K. L. (2017). Perceptions of disability and special education among East Asian parents: US immigrants and non-immigrants. Journal of International Special Needs Education, 20(1), 41-55.

Healthcare from a Disability Studies Perspective

Abby Caughman

Healthcare is a human right. I know that is a controversial statement and one that holds a lot of gravity in our current political climate. However, what is often missing from the healthcare conversation are two things: (1) an understanding of the Medicaid and Medicare system available to individuals who can’t get employer-based insurance and (2) a personal aspect of what it is really like to rely on state/federal insurance. I am going to use the next few paragraphs to address both tenants and hopefully convince you of this truth: healthcare is a human right.

I was diagnosed with a chronic blood cancer in April 2022. It is a blood cancer that is most common in 60-year-old men. I am a 24-year-old woman. I am lucky enough to be on my parent’s health insurance until I am 26. I am terrified of what is to come.

When I was first diagnosed in South Carolina, my body did not respond the way it was supposed to. My oncologist told me that I was “outside of South Carolina’s level of care.” I had to seek medical care elsewhere, out of state. I went to the Mayo Clinic in Rochester, Minnesota.

The doctors in Minnesota saved my life. They came up with a treatment plan and I continue to follow up with my Mayo Clinic oncologist virtually every 3 months. He is the only person I trust with my cancer care- with my life.

I have since moved to Chicago, IL. I am assembling a wonderful group of doctors here that work side-by-side with my Mayo Clinic team. They both help me administer my weekly chemotherapy- medication alone that costs $70k/year. Medication that I will need to take for the rest of my life.

I will be terminated from my parent’s health insurance when I turn 26. I cannot work while fighting cancer- not when I am permanently disabled. I will have to turn to Medicaid to get health insurance. However, here is what many don’t know about Medicaid:

·      With Medicaid, healthcare coverage does not cross state lines (What Is the Difference, 2023). IL Medicaid can only be used in Illinois unless for a medical emergency. I won’t be able to use Medicaid at the Mayo Clinic in Minnesota because that is “routine” even if it is lifesaving. Medicare does work nationally, but the qualifications are much stricter. Some people qualify through end stage renal disease or ALS, but most often you need work credits to qualify- something that many disabled individuals do not have (What Is the Difference, 2023).

·      One in four providers in Illinois do not accept Medicaid (Hest, 2022). Which of my providers will I not be able to see? With Medicaid, individuals often do not get to choose their healthcare provider, Medicaid decides it for them. Further, the reimbursement rate is much lower for Medicaid compared to Medicare or private insurance which deters healthcare systems from accepting patients (Holgash & Heberlein, 2019). Medicare paints a different picture- only 1 in 100 doctors in IL do not accept Medicare, thus allowing patients a choice in their healthcare providers (Ochieng & Clerveau, 2023).

·      Each state gets to decide Medicaid eligibility (What Is the Difference, 2023). If I am eligible in IL, that doesn’t mean I am eligible in any other state. When someone moves to a new state, they need to re-apply for that state’s Medicaid- qualifying in IL doesn’t guarantee qualifying in IN. Can you risk moving across state lines and losing health insurance?

Instead of worrying about my health, I am worried about insurance. Instead of worrying about my cancer care, I am worried about insurance. Instead of learning how to live, I am worrying about insurance.

My story is not unique. There are millions of people in the United States who are in the same situation as me- forced to go to only a handful of doctors who may or may not be qualified, cannot leave the state they are in, drip in fear of losing coverage. Further, even the process of applying for Medicaid or SSI is complicated, fear inducing, and inherently confusing.

I didn’t choose cancer. My friend didn’t choose autism, even though we do celebrate it. None of us choose disability- why should we be cut off from equal access to healthcare because of the bodies we are in? I deserve access to equitable, quality, choice-inducing healthcare even if I cannot work full time. So do my friends. So do the millions of people that I do not know. So do you.

Medicaid is a broken system. It traps people into doctors they did not get to choose and prevents them from seeking out healthcare professionals that could be lifesaving. Where would I be without the Mayo Clinic? I would likely be dead.

My life matters. Every life matters, and with this essence of value, comes the need for adequate healthcare- Medicare, not Medicaid. Healthcare is a human right. I hope you believe me.

For more stories like mine, read here:

-       https://thearc.org/blog/using-medicaid-is-complicated-that-hurts-people-with-disabilities/

-       https://www.npr.org/sections/health-shots/2021/04/05/984435809/families-with-sick-kids-on-medicaid-seek-easier-access-to-out-of-state-hospitals

Why is it important for Inclusion?

By Bridget Brown, Self-Advocate Trainee

The United States just celebrated the 40th anniversary of the Rehabilitation Act. I watched a two-part series about the Act and I learned more information about the disability rights movement. It was so interesting! A lot of the original advocates who were at Crip Camp talked about their advocacy journey.  

The Rehabilitation Act of 1973 is a federal law prohibiting discrimination against of people with disabilities by federal agencies, federal contractors, or programs receiving federal funds. It also provided grants to states for vocational rehabilitation services, supported employment, independent living, and client assistance.1 Section 504 of the Rehabilitation Act is about civil rights and equal access. It created and extended civil rights to people with disabilities, provided opportunities for children and adults with disabilities in education, employment, and other settings with accommodations.

This paved the way for the 1975 PL 94-142 – The Education for All Handicapped Children Act (IDEA). 2 Legislation that followed included the ADA 1990, The Olmstead Decision, and the Ligas Consent Decree3 just to name a few. The Rehabilitation Act is 40 years old, and I am a person with a disability called Down Syndrome who is 37 years old. I am a part of this historic journey, every part of this impacted my life.

I was born 11 years after the PL 9412 (IDEA) that said all children should be educated with a free and appropriate Public Education (FAPE) in the LEAST RESTRICTIVE ENVIRONMENT (LRE). That law changed my whole life! When my mom’s cousin Maire was born with Down Syndrome in 1962. She went directly to a state institution from the hospital and lived there for her whole life. No family members ever met her. That is the true story of many people with Down Syndrome not long before I was born.

However, when I was born, and I went home to live in my community, the Law changed that for me and others. Because of the law, my family was able to advocate for me to be the first person included in my school, and one of the first in Illinois. If they did not advocate for me and if they did not have the LRE (Least Restrictive Environment) law behind them, I would have been in a completely self-contained segregated classroom. I possibly be in a different school or district; I would have had no access to the general curriculum and school activities. I went on to be one of the first fully included student to graduate from High School .and I have lived a full inclusive life. I am terrified when I think about what my life would have been like if I wasn’t included, if

I was born 11 years earlier. The Olmstead decision clarified LRE even more when it said that people with disabilities should be able to live and be educated in the most integrated setting. 

Most people I know with disabilities did not have an inclusive education, like I have, even when they had the LRE law to support them. Many people with disabilities are under educated and under employed. Illinois still has state institutions (more than almost every state in the country) where people with disabilities live in the most segregated and restrictive environment possible.  

When I was 18, students with disabilities could not even walk across the stage at their graduation. Because they would lose their opportunity to receive transition services. A friend of mine with Down Syndrome who was included just like me had a big advocacy campaign, and a law was passed to let students with disabilities walk or roll across the stage at graduation. It is called the Brittany Booth Bill. I was part of that advocacy along with many other people in the community.

I have learned so much about the amazing advocacy work in the last 40 years that includes the rehabilitation act, Public Law 94142, The ADA, Olmsted, Liga’s and more. All these public laws have opened doors for me to be included in my school, at UIC, in my place of worship, and in my work. I am so grateful for all the advocates who came before me and made my life opportunities possible. I think of Judy Heumann who was instrumental in disability rights legislation and all the champions like her.

We still have a LONG way to go, to live out the intent of the laws. I have been given a clear voice so I can advocate for others, who are marginalized and segregated due to their disabilities. In this state we have public laws for rights for people with disabilities to be included but the public laws that are important for inclusion have not always been followed. We must hold people and organizations accountable when they fail to help people live in the most integrated setting.  

1 https://www.eeoc.gov/statutes/rehabilitation-act-1973

2 https://sites.ed.gov/idea/IDEA

3 https://www.dhs.state.il.us/page.aspx?item=85190

Shifting Language in Physical Therapy when Working with People with Disabilities

By: Madison Turner, LEND PT Trainee

Physical therapy is a profession with a large emphasis on the movement system and physical function. Within the physical therapy realm, disability is defined as “an umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspects of the interaction between a person’s health condition(s) and that individual’s contextual factors, environmental and personal factors.” (The ICF: An Overview - Centers for Disease Control and Prevention) This definition implies that any limitations with movement and participation is something that needs to be fixed and corrected during therapy treatment sessions. This language is something that is frequently used when reviewing charts and creating an image of the cases we are exposed to in our classes.

As I attend LEND sessions with self-advocates and family advocates coming to speak to us, I am realizing there needs to be a shift in language and in patient goals when working with patients with disabilities. I feel there is a large emphasis in my field to “fix” any impairments we find or any deviations from a typically functioning or typically developed individual. However, for people with disabilities that receive physical therapy, the reason for those treatment sessions is not always related to their disability and may instead be working to address a more acute injury.

Figure 1. Diagram of the International Classification of Functioning, Disability and Health. (Reference: Rimmer, 2006)

The International Classification of Functioning, Disability and Health (ICF) model is a tool commonly used by physical therapists when considering patient goals and prognosis. This model recognizes several factors that may affect an individual's ability to participate in treatment sessions and their motivation to get better. These factors include body function and structures, activities, and participation, as well as environmental and personal factors (The ICF: An Overview - Centers for Disease Control and Prevention).

This model is a great step to ensuring we take into account several factors before treating patients and determining their goals and prognosis. With that being said, there still seems to be a greater emphasis on the components of body function/structures and activities as those components are where physical therapists are experts. All 5 factors that are needed in this model should be considered when determining patient outcomes and priorities when it comes to creating the patient plan of care. The integration of the participation, environmental, and personal factors may help allow for treatment sessions to be more targeted for all patient populations, but perhaps especially for patients with disabilities as they may not be looking to have their impairments “fixed” but instead returned to their prior level of functioning.

References

1. The ICF: An overview - centers for disease control and prevention. Accessed September 28, 2023. https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf.

2. Rimmer JH. Use of the ICF in identifying factors that impact participation in physical activity/rehabilitation among people with disabilities. Disability and Rehabilitation. 2006;28(17):1087-1095. doi:10.1080/09638280500493860

3. World Health Organization. ICF: International Classification of Functioning, Disability and Health. World Health Organization: Geneva; 2002.

Let’s Talk ‘Westernized’ Care in Occupational Therapy

By Elizabeth Hume, Occupational Therapy Student and LEND Trainee

I am currently in my first year of my entry-level occupational therapy doctorate program at the University of Illinois at Chicago. As I am sure many health care practitioners can attest to, the biggest learning curve when entering professional training is learning to think like a practitioner. Understanding the paradigm, or the concepts, beliefs, and values, that defines your practice is at the crux of understanding what your practice does and why it is important. As I have come to learn very quickly us occupational therapists especially need to be ready with an “elevator pitch” to explain why and how our profession can provide unique care that can’t be given by any other profession. With that we must also strive for cultural competency. In other words, in order to truly put patients at the center of our practice we must possess the ability to recognize our cultural beliefs and practices, understand how they differ from those of cultures other than ours, and then educate ourselves on how to respectfully communicate with individuals of cultures other than our own. In order to provide equitable care, we must be able to provide therapy to our clients regardless of their background.

The current paradigm of contemporary occupational therapy evolved largely in the United States and Canada. Compared to other health care professions, occupational therapy is fairly new. Its roots sprouted in the 1700s and grew into the 1800s with health care professionals using leisure and daily activities, such as gardening, to rehabilitation individuals in the mental health setting. Then the field really emerged in the early 1900s during and after the first world war when reconstruction aides were called upon to rehabilitate soldiers. From there, interest in using meaningful activities, or what we call occupations in the OT world, sparked in both physical and behavioral health realms to develop what we know as occupational therapy today. Despite our Western origins, as culturally competent practitioners, occupational therapists know that not every client that we are treating will have the same experience because they simply don’t live the same lives.

Here’s how I have come to think of this concept:

Let’s think of a task, brushing your teeth. Did you brush your teeth this morning? Did you do it right when you got up? Where did you brush your teeth? Did you have to travel far to get there, or was it close? Did you use a toothbrush or something else? If you used a toothbrush, what does your toothbrush look like? Did you use toothpaste? How much toothpaste did you use? Did you use water? How did you get the water, did it come from a faucet or from another source? Did you feel safe when you were brushing your teeth? Why do you brush your teeth? Now think how a friend of yours might brush their teeth, and then someone in a different state as you. Now think of someone in a different country. How might their experience differ from yours? An occupational therapist considers the answers to these questions to determine how to deliver individualized care to each consumer.

Traditionally, the ideals of Western cultures are individualistic, considering what and how an individual wants to do. The individual “self” is central and exists within the environment. The individual is the creator of their destiny. In contrast, there are other cultures that emphasize community needs and values as well as being in harmony with one’s context. An East Asian perspective views the “self” as part of a collective whole, inseparable from the environment. Under this ideology, health and disability is defined by a multitude of factors both in and outside of the physical body. It is occupational therapy practitioners’ duty to recognize and understand that the origins of occupational therapy can carry Western bias, possibly denying consumers the quality of care they need. One way that occupational therapy has adopted other perspectives of the world is through the Kawa (River) Model. Developed by a Japanese-Canadian occupational therapist, the Kawa Model emphasizes the self as being infused with and affected by the components of the self, deities, and nature. The individual self is not centrally located among it all. The Kawa Model, “kawa” meaning “river” in Japanese, explains these ideas through a metaphor of a river and the components that exist within it. The river’s stream represents an individual’s state of well-being through life while the aspects of the river such as driftwood, rocks, and the walls and bottom represent changes and obstacles in life. Sometimes the stream may become disrupted, rehabilitation using the Kawa Model aims to show the individual how they can once again become in harmony with the inseparable components of their life. Unlike other Western models of occupational therapy, which analyze the relationship between the person, environment, and occupation, the Kawa Model challenges the individual to look inward, and asks for their perspective. It helps the consumer and their family understand their personal relationship with their circumstances and visualize change in their life.

The Kawa Model – InfOT (InfOT): https://www.youtube.com/watch?v=Kl9U2-zvUCg

As a new student in occupational therapy, I admittedly did not consider how models of occupational therapy have the potential to put occupational therapists at risk of providing inequitable care. If I as a practitioner fail to recognize and consider the experiences and culture of the consumers of my care, I risk providing services that are less than therapeutic. Recognizing and utilizing non-Western models of occupational therapy can validate occupational therapy practice around the world. Not only will it help us provide the most equitable care possible, it will expand the use of occupational therapy. The Kawa Model doesn’t have to be strictly used with individuals from cultures with collectivist ideals. It can help consumers who are more visual see how their life changes overtime and how their life course is connected to life events and obstacles. It may help consumers visualize goals they have for themselves understand the path they need to take to achieve them. It can also help someone look back on their life and understand obstacles they have faced and how they allowed their life course to continue on. In my opinion, there are exponentially more routes to take when considering worldly perspectives.

An Introduction to the Kawa Model (The Royal College of Occupational Therapists): https://www.youtube.com/watch?v=3HwYUIZiCZI

Occupational therapy is a unique practice that promotes lifelong well-being through engaging in meaningful activities, although there are places around the world where occupational therapists are yet to practice because the profession just does not meet the needs of the people. As a future occupational therapist my goal through being culturally competent is to be confident in the use of various approaches and be able to look at health through a multitude of lenses. I will do this by striving to make myself aware of emerging models in occupational therapy, work to understand the cultural dynamics my clients’ backgrounds, and being aware of my own inevitable biases. For the sake of equitable care and for the love of learning, I urge students and practioners, new and experienced, to do the same.

References

Fisher, G. (2023, August 22). OT 600: The Historical Development of Occupational Therapy’s Conceptual Foundations Part 1: 1800-1979 [PowerPoint Slides]. Department of Occupational Therapy, University of Illinois at Chicago. Blackboard. https://www.blackboardconnect.com

Fisher, G. (2023, August 27). OT 600: Overview of the Main Occupation-Focused Models [PowerPoint Slides]. Department of Occupational Therapy, University of Illinois at Chicago. Blackboard. https://www.blackboardconnect.com

Gillen, G., & Brown, C. (2023). Willard & Spackman’s Occupational Therapy, Centennial Anniversary Version (14th edition). Wolters Kluwer.

InfOT (2019, September 7). The Kawa Model-InfOT [Video]. YouTube. https://www.youtube.com/watch?v=Kl9U2-zvUCg

Iwama, M. K., Tomson, N. A., & MacDonald, R. M. (2009). The Kawa model: The power of culturally responsive occupational therapy. Disability and Rehabilitation, 31(14), p. 1125-1135. https://doi.org/10.1080/09638280902773711

The Royal College of Occupational Therapists (2023, May 1). An introduction to the Kawa Model [Video]. YouTube. https://www.youtube.com/watch?v=3HwYUIZiCZI

Flipping the Script on Scripting

By Amanda Weil, SLP Trainee

Historically speaking, scripting in the field of speech-language pathology was seen as a negative. It was considered to contain meaningless repetitions that did not serve any communicative function. Moreover, scripting was viewed as something that should be eliminated in Autistic individuals during speech therapy sessions.

For those who are unfamiliar, scripting is a type of utterance that is a form of echolalia. This means that language is repeated from others after a brief or extended time. For example, delayed echolalia might look like an individual repeating a line from their favorite TV show.

Current research shows growing evidence for the various communicative functions that echolalia/scripting provides. For example, scripts can be used to facilitate turn-taking, labeling, requesting, affirming, and protesting. Moreover, scripts play an important role in gestalt language acquisition (Prizant, 1982, 1983; Prizant & Duchan, 1981; Prizant & Rydell, 1984; Stiegler, 2015)

Gestalt language acquisition is learning language from a “top-down” approach. This approach is common in Autistic individuals. The stages of gestalt language acquisition involve learning language in chunks versus the “bottom up” approach to language acquisition often seen in neurotypical individuals. Scripts are a valuable stage in language development for those who learn from a “top-down” approach, and they are a valuable tool for communication.

Two cartoons explaining differences in analytic vs. gestalt language development through interactions between parent and child.

References

Prizant, B. M. (1982). Gestalt language and gestalt processing in autism. Topics in Language Disorders, 3(1), 16–23.

Prizant, B. M. (1983). Language acquisition and communicative behavior in autism: Toward an understanding of the “whole” of it. Journal of Speech and Hearing Disorders, 48(3), 296–307. https://doi.org/10.1044/jshd.4803.296

Prizant, B. M., & Rydell, P. J. (1984). Analysis of functions of delayed echolalia in autistic children. Journal of Speech and Hearing Research, 27(2), 183–192. https://doi.org/10.1044/jshr.2702.183

Stiegler, L. N. (2015). Examining the echolalia literature: Where do speech-language pathologists stand? American Journal of Speech-Language Pathology, 24(4), 750–762. https://doi.org/10.1044/2015_AJSLP-14-0166

Yoshimura, J. (2022) Analytic and Gestalt Language Processing [Digital Image]. The Informed SLP. https://www.theinformedslp.com/review/let-s-give-them-something-to-gestalt-about

Navigating What’s Best

By Shanita Jones

Blaaat… plat plat! Blaaaat … plat plat! As I cut through every single tiny white circular pill my hands get a little wearier. It’s been a long, long day, and everything seems a little off track. And I’m tired. Like so tired that I think you’d never understand. But these little tiny pills are yet another concoction that “just might maybe” make a difference in his gait. Or maybe not. You see, it’s all just practice, a trial… no treatment, no cure. I’m lost and sometimes so terrified of tomorrows. BUT! I… CAN… NOT… GIVE… UP! Even with this tired body and these tears streaming down my face, I can’t allow him to see me this way because I never want him to lose hope.

“WHOA! What’s wrong with HIM?!” Insert awkward pause expecting me to give a full report on my child’s health and diagnosis, something we would never do to any other child utilizing the park. “CAN HE TALK? D-O-E-S H-E U-N-D-E-R-Stand?” Insert me explaining once again that his disability is physical and not cognitive, that every person with a disability is not the same. Also insert him becoming very frustrated because he has his own voice and doesn’t need anyone else speaking for him. “Only the strongest mothers are blessed with children with SPECIAL NEEDS!” Insert feel good quote about parents of disabled children with well-meaning but disrespectful language. “You couldn’t possibly have the faith you claim to have because your child would be healed!” Insert long drawn out prayer from someone attempting to douse my kid with oil. “I don’t KNOW how you do it!?!?” As if I’ve ever had the choice to “just walk away.” Or why would you think I would if I could. This is my blood… a living breathing part of me… my heartbeat… MY CHILD! “It’s a good thing you’re in that field, that’s why he was given to you!” What about all the other children whose parents are not in the field. Do you realize it still does not make it easy? 

To see your child physically deteriorate before your eyes is a painful thing. To hear people who typically mean well believe that the difference of your child is somehow a gift, is confusing. To see adults stare with mouth fully open at my beautiful boy, makes me sick inside. He is funny. He is a gamer. He loves math. He was the one who shed tears knowing that his Mommy would be going back to school for an advanced degree. He is such a charmer, ask any of his prior or current caregivers. He has so many great things about him that others will never know or take the time to know simply because he’s “different.” He is a human being. He is Tyler.

I too am human. I too once used insensitive words and phrases, not meaning to cause harm. It was through studies and talking to friends, students, and persons I’ve served who are disabled that I learned to do better. I reflect back on just a few weeks ago when my daughter told me in shock, anger, and dismay, “Mommy! He said he does not want a cure, that he’s okay with people taking care of him!” I can still feel the discomfort and embarrassment he exuded for “being exposed.” I remember the sadness I felt. The anger I felt. How could you NOT want a cure? There are people out here fighting every day for a cure; but you are being ungrateful to say you don’t want one? 

Just as quickly as my insides began to boil over in hurt, his words caused me to sit back and reflect on words from one of my friends, who also has a disability. A conversation had over two decades ago in which she discussed how while growing up everybody wanted her to walk. That her difficulties in walking as an effect of Cerebral Palsy gave the people around her more desire for her to do so. It made me remember how she spoke of those days when it was hard to go to physical therapy or other therapies just to try to walk. Of how hard it was to get from one place to the other, something that we don’t think about and typically take for granted as able-bodied persons. How it could take her 15, 20, or even 30 minutes for what would take you and I only a few short minutes to accomplish. How painful it would sometimes be and how she came to the realization that the ability to walk was not as important to her as those around her imposed on her. All those sessions of discomfort, only to please everyone around her. That is until she one day had the courage to say, “Hey I don’t wanna do this anymore. I’m okay with using my chair.”

I remember the empowered sound of her voice when sharing this information with me. Likewise, I remember how sad my heart was that I too wanted her to walk again and I too wanted to stretch her so that she could “get better.” That I too was guilty. The same person that was supposed to be helping her. The same person that is supposed to be empowering her. The same person that has been given the opportunity of providing a service to her, wanted exactly the opposite thing of what she wanted for herself. 

We must question ourselves as parents, caregivers, supports, therapists, teachers, service providers and clinicians, “What am I here for? Why am I doing this? Is it to innately self-serve OR is it to serve the person that I am supposed to be supporting?” Is it our dreams that we are trying to reach? Is it our broken hearts that we are trying to heal, while inadvertently taking away something that is a part of this person? A part of who they are. Do we take the time to ask them? What do you want? What are your desires? Or are we selfishly by human nature becoming part of the source of pain and frustration. 

As the human race, we must learn to reflect every single day when we’re walking past that person with a disability, when we’re working alongside our disabled coworker, when assisting a loved one who is disabled, “What is my goal? Is it to serve them or is it to serve myself? Is it to make my life better and less stressful or is it to increase their quality of life? Am I attempting to fix them or make changes in this world to make it accessible for all.” Once we start doing this, life for all will become better. 

Blatt… platt platt. Another day. Another pill. Another moment in which I wish that Ataxia Telangiectasia never infiltrated our lives. Blatt… platt platt. Another day that I am humbled to be a mother and also a service provider on a quest to not “fix” persons living with varying disabilities, but as an ally working daily to make life more equitable for all.

To find out more information on Ataxia Telangiectasia (A-T) a rare condition, please visit the A-T Children’s Project at atcp.org

Supporting Parents and Caregivers of Children with Autism Spectrum Disorder: A SLP’s Perspective

By Chloe Maghinang, SLP Trainee

During my first clinical placement as a graduate student clinician, I worked with pediatric clients who were seen secondary to concerns for autism spectrum disorder (ASD). Walking into my first day, I was well-equipped with textbook knowledge on typical language development and ASD. What I was not prepared for, however, was answering families’ questions and addressing their concerns. Some were given different recommendations from various healthcare professionals that conflicted with what my supervising speech-language pathologist and I were recommending. Some expressed concerns that their child’s recent vaccines or exposure to multiple languages caused their communication difficulties. Some had no idea what resources were available or where to start. What all families had in common, however, was that their concerns stemmed from wanting to help their child and how they can support their child’s success now and in the future.

I was struck by the information parents and caregivers were receiving– or, the lack thereof– regarding ASD and neurodevelopmental disabilities, and I resonated with their concern and confusion. This uncertainty is felt in the general population; a study by John and colleagues (2018) found that people with varying experience and knowledge of ASD still subscribe to inaccurate beliefs of ASD, such as that all people with ASD are dangerous or mad. However, they are still willing to reflect and adapt their views. Their findings suggest that identifying myths and views surrounding ASD will help improve lay understandings of ASD. With this goal in mind, I would like to address the most frequent concerns I have encountered from parents and caregivers of children with ASD.

“What signs of ASD should I be looking for?”

○      The earliest signs of ASD include avoiding or not keeping eye contact, not responding to their name, and not engaging in other activities of interest with others. Children with ASD may also get upset when order is changed or during transitions in routine, repeat words over and over (called echolalia), or become fixated on certain parts of toys, like the wheels on a car. These signs can occur as early as one to two years old (Centers for Disease Control and Prevention, 2022).

1. “Why does my child have autism?”

○      There is no known single cause of ASD. Both genetics and environment may play a role. Extensive research shows no reliable link between vaccines and autism (Mayo Clinic, 2018). Moreover, there is no evidence to suggest that bilingual exposure negatively affects developmental outcomes for children with ASD. In fact, bilingual children show advantages in language outcomes compared to their monolingual peers (Wang et al., 2018).

“What resources are available for me?”

○      For those looking to support their child as they transition to school, the Illinois State Board of Education provides a comprehensive guide of special education services, laws, and other resources at their website (https://www.isbe.net). For more local resources, the AARTS Center at Rush as well as the Autism Clinic and TAP Training Center through UIC are great resources for families of children with ASD. One resource I like to recommend to all parents and caregivers is Teach Me to Talk (https://teachmetotalk.com), which provides great videos and resources for parents who are looking to support communication for their child with ASD at home. Though this list is not exhaustive, these provide a great place to start.

Clearly, I have not touched on all the possible questions and concerns that families may have regarding supporting their child with ASD. However, I hope that with this information and tools in hand, parents and caregivers feel more empowered to cultivate success and advocate for their child with ASD.

References

1. Centers for Disease Control and Prevention. (2022, March 28). Signs and symptoms of autism spectrum disorder. Retrieved August 31, 2023, from https://www.cdc.gov/ncbddd/autism/signs.html

2. John, R. P., Knott, F. J., & Harvey, K. N. (2018). Myths about autism: An exploratory study using focus groups. Autism, 22(7), 845–854. https://doi.org/10.1177/1362361317714990

3. Mayo Clinic. (2018, January 6). Autism spectrum disorder. Retrieved August 31, 2023, from https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/symptoms-causes/syc-20352928

4. Wang, M., Jegathesan, T., Young, E., Huber, J., & Minhas, R. (2018). Raising children with autism spectrum disorders in monolingual vs bilingual homes: A scoping review. Journal of Developmental and Behavioral Pediatrics, 39(5), 434–446. https://doi.org/10.1097/dbp.0000000000000574

Intersectionality at its Best: The Hard of Hearing and Black ASL Culture

By Alexandra Richmond

Last year, a professor assigned the above video on Black ASL as part of an assignment for the class I was enrolled in. I became so enthralled by this video that I immediately signed up for ASL lessons. I often study and research the intersectionality of race and disability but I am still guilty of often looking past the importance of what this looks like in practice and in our day-to-day lives. I think the video that I am sharing is a perfect example of why representation matters in disability fields and the importance of having a sense of belonging within our community. In this blog post, I wanted to share this video to teach what Black ASL is, tell its history, show its beauty, and why it's important. 

A Short History of Black ASL

Just like spoken languages, sign languages have dialects. Black ASL is the unique dialect of American Sign Language (ASL) that developed within historically segregated African American Deaf communities. Largely unknown to outsiders, Black ASL has become a symbol of solidarity and a vital part of identity within the Black Deaf community. Sign language is a form of communication that is mostly made up of signs with the hands and other body movements, including facial expressions and postures of the body. Depending on where you are in the world, sign language can vary.

Each language has its nuances, grammar, and complexities – just like any other spoken language. ASL is not a universal language, even within the United States. Various groups of Deaf people sign differently depending on their race and where they are in the country. That’s where Black ASL comes in. During American slavery, there weren’t any established schools for Black children – deaf or hearing. After the Civil War and abolition of slavery, Black people began to open their own schools since they weren’t allowed to attend schools with white students.

Even deaf children, regardless of race, attended different schools than their hearing counterparts. That meant Black deaf children had to attend schools specifically created for their race and disability. It was during this period of segregation that Black Deaf communities had to use different means of language socialization to communicate. Because Black and White’s deaf students socialized in different environments, their sign languages were different, too. 

Black ASL Importance

Black ASL was more in line with the traditional version of ASL, like using two hands when signing. Some of the major differences of Black ASL are that it uses more facial expressions and personality. Many Black ASL signers say that it allows them to showcase more of their “feeling” and “persona” compared to ASL. You’ll also see that Black ASL uses more signing space as well. Black ASL also provides a unique community and shows why representation of educators, service providers, interpreters, and all of us, is so important to ensure a sense of belonging for all.

Check out the video to learn more and see how beautiful and fun communicating can be within the Black ASL community!

Going Back to Our Roots: Why OT is valuable in mental health settings by Melissa Wen, Occupational Therapy Trainee

A couple of weeks ago, I was looking for motivational videos to inspire me to work on my laundry list of school assignments when I found this TED talk by therapist KC Davis. In her talk, she had shared her story about how she struggled with having the motivation to complete self-care tasks like washing the dishes, cleaning the house, and doing the laundry when she had her second child during the pandemic. When she shared her struggles online in a light-hearted TikTok, hundreds of thousands of people in her comments sections revealed that they also struggled with completing self-care. Yet in the ten years she has worked as a mental health provider and even longer as a recipient of mental health services, KC has only had one provider ask about how she was completing self-care activities, and that was at a psychiatric hospital as a teenager.

Video: Therapist KC Davis sharing her story about self-care tasks at TEDxMileHigh

While KC doesn't reveal who this provider was during her TED talk, I had a pretty good idea of what her approach emulated once she started talked about reframing self-care tasks to fit a person's functional needs. Maybe a year ago, I would have thought KC's approach was new and innovative. Now I know that what she's describing already exists in a century-old profession called occupational therapy.

Video: Documentary created by AOTA describing the 100 year long history of Occupational Therapy in the United States

Compared to other health professions, occupational therapy is rather new. Started in the early 1900s, occupational therapists were originally reconstruction aides and started as volunteers to help the wounded soldiers during World War I. During the war, these soldiers often were in various states of shock from their injuries or listless as they waited for their wounds to heal in hospital beds for days. Influenced by the arts and crafts movement and the moral treatment movement, some of the reconstruction aides developed a care program based on the philosophy that actively involving patients in arts and crafts activities could heal the mind and body. Using this philosophy, the reconstruction aides engaged the wounded soldiers in crafts like crochet or basket weaving. With these techniques, the reconstruction aides were able to boost morale and ease tensions in the medical ward. Eventually training programs were developed internationally as more and more reconstruction aides were mobilized throughout the war effort. After the war was over, these reconstruction aides would be moved to mental health facilities, tuberculosis sanatoriums, and community setting workshops like the Hull House where the practice would continue to evolve and grow.

(Picture: Young girl sitting on the floor of an exercise play room with a female OT while smiling at the camera and playing with giant Lego blocks that are red, blue, green, and yellow)

Today, occupational therapy looks very different from how it began. OT providers can be found in a variety of settings such as hospitals, skilled nursing facilities, and early intervention. The activities that OT providers work on are not just arts and crafts but also activities related to school, work, sleep, and other activities of daily living. But the principles behind the profession are largely the same. When someone asks me what occupational therapy is, I tell them that it's a profession that helps people participate in the meaningful activities they do every day by taking into consideration the person's abilities, environment, and activity demands. Within mental health, that could mean that an OT working with a mother going through decision fatigue could collaborate on simplifying her home environment or creating a pre-determined plan for self-care tasks so that she didn't spend her limited free time thinking about what she should do next. 

So if occupational therapy started in mental health, how come no one seems to know about mental health OT? Part of the issue is the lack of knowledge of occupational therapy services. In most settings, because occupational therapy has such a wide scope with seemingly different responsibilities in different settings, most people are not aware of the OT's role in healthcare teams. Another issue is that occupational therapists have been excluded from behavioral health as service delivery and payment models have changed. Based on the 2010 Workforce Study conducted by AOTA, only 2.9% of occupational therapists were working in mental health settings. Because of the lack of reimbursement from insurance companies, OT providers have seen fewer opportunities to provide services to those with mental and behavioral health challenges.

 If this is the case, what can be done? One way you could help spread the word about mental health OT is by building support for the Occupational Therapy Mental Health Parity Act (S. 4712). The aim of this bill is to remove barriers to providing OT services for those with a mental health diagnosis by expanding access for those covered under Medicare or Medicaid. While Medicare and Medicaid already cover mental health OT services, this benefit has been underutilized for years given the lack of knowledge of OT's role in mental health. By contacting your legislators and asking them to support this bill, thousands of Americans who are struggling with having the motivation to complete self-care tasks can have access to a provider who knows how to help.

With that, I'll get back to work on my laundry list of assignments.

For more information, the American Occupational Therapy Association (AOTA) has further information about this bill and mental health OT in general in the links below:

Increasing Access to OT Services in Behavioral Health | AOTA

Mental health and well-being | AOTA

Occupational Therapy in Mental and Behavioral Health (aota.org)

A TEDx Talk by mental health OT Jill Martin about what is mental health OT:

The hidden magic of Occupational Therapy | Jill Martin | TEDxYouth@Haileybury - YouTube

References:

Workforce-trends-in-OT.PDF (aota.org)

What is Struggle Care? — KC Davis

History of the Occupational Therapy Profession - Prince Edward Island Occupational Therapy (peiot.org)

Image Source: https://media.istockphoto.com/photos/female-occupational-therapist-is-doing-rehabilitation-with-a-child-picture-id637532242?k=6&m=637532242&s=612x612&w=0&h=wd4FItUnjFQkkgYD0XBmbQTBNpS7LyUTYJYRku4ycUk=

What is an ECHO and how can it help you in your daily life? by LEND Nursing Trainee, Meg Tomlins

For many people, including professionals working in healthcare, having access to up-to-date information changes over time, especially once someone graduates from a program of study.

Maintaining clinical knowledge can be challenging unless one is employed by an academic/research institution, an organization that supports continuous learning and research, or one that offers access to research and reference tools. With this in mind, there is an educational format to become aware of—an ECHO program.

ECHO stands for Extension for Community Healthcare Outcomes. It is an approach to learning for professionals that decentralizes knowledge to amplify best practice care for underserved people all over the world. There are many types of education that are delivered in this format: a multi-week virtual meeting that combines current information in a didactic learning format and case studies for discussion.

ECHO programs are often hosted by different types of organizations and academic institutions—each one has its own agenda/topic, schedule, frequency for meeting—and many offer continuing education credits (CEUs). A big advantage to learning in this way is that it connects people from all over into a conversation together, typically in a live/synchronous session with opportunities for question/answer time.

A few sessions that are particularly useful for our studies in Illinois LEND include the ECHO Autism in Primary Care, hosted by Advocate Children’s Hospital in Chicago. Another is About Autism in Toddlers, hosted by the Dr. Amy Wetherby at Florida State University. Both series are packed with useful information. (A quick Google search can help you find these and many more!) Different types of clinical people attend these—consider joining a session if your schedule permits!

Please consider searching for an ECHO program that aligns with your areas of interest.

To learn more about Project ECHO, the model for learning (“all teach, all learn”) and its founder: https://hsc.unm.edu/echo/what-we-do/about-the-echo-model.html

Reference

ECHO Institute at the University of New Mexico. (2023). https://www.uicc.org/membership/echo-institute-university-new-mexico

Breaking Information Dissemination Barriers by Family Trainee Lea Whitney

Pictured is the author Lea Whitney with black hair and brown eyes, sunglasses on her head and next to her is her sister Rhiannon also with brown hair and eyes, both are smiling.

I am an older sister to a beautiful young woman named Rhiannon. She is 36 and has Down syndrome. As a family member I often hear the word “maze” in reference to all the new things we need to navigate to support my sister and ourselves as caregivers. Usually, we hear it from a well-meaning service provider, medical professional or another family like ours and in the context of “let us help you navigate the maze of services and resources.” 

At times finding what we need can be confusing and complex. It’s no secret, services and resources are difficult to find and even when you do find what you need- it can still be hard to navigate, especially government services. 

After thirty years my mom and I understand the system and accept its challenges. But, families shouldnt have to wait thirty years to understand this complex system. There has to be more we can do.  

In the United States, there are 307 million internet users (93% of the population) that currently use the internet to find answers to their questions and find information. (1)

We use the internet for everything. I have used it to find vital things such as my mom’s current house, our current house, our family doctor and so much more. But, when it comes to finding resources for Rhiannon it isn’t easy and I often can’t find what I need, why is that? Maybe I am not asking the right question? Honestly, I don’t always know the question I am trying to ask. This seems like an incredibly ineffective use of something that has so much potential. 

My sister and I grew up in a very rural town in Indiana. I recall the struggles my mom went through when trying to find resources and services for education, healthcare, and government benefits. My mom said the best thing she did was move to Illinois to be closer to family and better resources. This also helped her obtain a career in special education and build her community of professionals and advocates she needed to navigate “the maze” throughout my sister’s early life.  

Today, Rhiannon is an adult and our questions have multiplied. Unfortunately, my mom is retired, our community nearly diminished and we are finding it harder to find resources for adults. 

There are 2,272,298 adults in Illinois with a disability (CDC). This is equal to 23% or 1 in 4 adults.  (CDC State profile 2021). (2)  The number of people with disabilities has increased in recent years thus increasing the need to improve access to information and resources found digitally. 

So how do we do that?  

I asked my mom what she thinks about this issue. She said one thing we can do is rebuild Rhiannon’s community. But, what does that look like now? And how do we do that in a digital age? Thirty years ago it was our neighbors, friends, clinicians, teachers, care managers and more and we had no internet. Today, with technology you would think it would be easier to rebuild someone’s community, but it is not. Ironically, in my opinion “social” media hasn’t really made us more social, has it? 

Despite the social dilemma the digital world is still capable of touching many lives, but it can be complicated to use. Here are a few suggestions on ways to break a few of these barriers and rebuild: 

1. Our location should not define our ability to access vital resources or connect with advocates. If you have valuable information to share with one family, think of the families you aren’t talking to and ways you can. This can be done by creating an information dissemination plan.

Everyday people use Zoom, and although it fails us sometimes it also gives many people in remote locations access to resources, and it’s not the only tool that does this. There are lots of tools to increase engagement digitally, also known as communication channels. When you build your plan, research different channels and think about who your audience is, the best way to reach them, and if you don’t know how to reach them, then ask. 

1. Don’t assume that if you post your resources on a website families will find it. When I think of information dissemination I think about three categories; findability, accessibility and usability.  How findable is the information? How accessible is it and how usable is it? Be an information dissemination change champion especially if you produce and post digital content in any way.  

2. Stop adding to “the maze.” Support policies for digital change and always ask families what resources are most important to them, this will ensure it gets to them and is useful. Also be aware of information overload. It is real for all of us, but incredibly more so for families.  

Finally, community is what matters most to families. Like my mom said life with Rhiannon is not a maze, but more of a journey. It’s different and new and unlike anything else but it’s also very beautiful and her community is what helps us on that journey. 

Next time you talk with a family, ask them about their community and how you can be a part of it and help it grow for the long-term. 

References:

1. “How Many People Use the Internet?” (Jun. 28, 2022). Zippia the Career Expert. Retrieved February 4, 2023 from https://www.zippia.com/answers/how-many-people-use-the-internet/

1. CDC’s National Center on Birth Defects and Developmental Disabilities – Impacts Illinois (n.d.) 2022 IL Disability and Health State Profile. Retrieved February 4, 2023 from https://www.cdc.gov/ncbddd/disabilityandhealth/impacts/pdfs/Illinois_Disability.pdf

Diversifying Physical Therapy: By physical therapy trainee, Liam Fasick

Photo: American Physical Therapy Association. Transforming the Profession: Reflections of 2019 Minority Scholarship Award Recipients

The above photo depicts the faces of many different physical therapists from diverse ethnic and cultural backgrounds overlaid with a rainbow tint and heart.

In the early 1900s, hundreds of thousands of wounded soldiers returned home with debilitating injuries following the fierce fighting of the First World War. In response, a small group of female civilians banded together to create a new profession called, “reconstruction aides”- today, we know them as physical therapists. Physical therapists can be found in all types of settings and PT is routinely listed among the most fulfilling professions. As a PT student, I am constantly reminded of why I love this field, but along with that, I am reminded that our profession is not without its shortcomings. As a profession, we lack diversity and representation.

Data from the APTA workforce analysis shows that the profession has been and continues to be white and female dominated. Although the profession has put forth the effort and seen growth in its representation over the years, many barriers still exist, making this profession inaccessible for some. First is that many individuals in the public have little to no experience with physical therapy and therefore may not even consider it an option. Along with this, the price of a three year-long Doctor of Physical Therapy program (on top of the four years of undergraduate education that is required beforehand) is daunting and can deter many individuals from lower socioeconomic classes. In recent years, we have seen a push for more diverse groups of applicants across all academic settings, but in my opinion, DPT programs specifically are lagging in terms of outreach, marketing, and educational practices.

Even within our own profession, we have systems that benefit some and exclude others. The American Physical Therapy Association (APTA) is physical therapy’s professional organization that serves to advance the profession through advocacy, lobbying, and continuing education. According to the 2019 APTA member demographics, 84.3% of members were White, 3.5% were Hispanic or Latino, 2.5% were Black or African American, 6.9% were Asian, 0.4% were American Indian or Native Alaskan, and 2.4% were other/two or more. The question then becomes why do we see such a large gap between White and minority membership?  The answer to this question might become a bit clearer given the fact that the cost of membership to this organization is $295/year. Additionally, PTs are not required to be members of the APTA to practice. For many from a lower socioeconomic background, the burden of student loans and mismatch between the cost of the degree and salary might deter practicing therapists from spending $300 a year on a membership. If we truly want to strive for diversity and inclusion in this profession, we must ensure that everyone has a voice and a seat at the table. 

Many physical therapists also face barriers when it comes to disability in the classroom and workplace. A 2022 pilot study performed by a student physical therapist revealed that, in a sample of 707 licensed physical therapists, 113 self-identified as having a disability. Of the 51 that were diagnosed with their disability prior to applying to a DPT program, only 37.3% disclosed their disability during the application process and of the 76 who were diagnosed prior to applying to their job, 25.3% disclosed to their employer; however, this same study showed that 70% of PTs were comfortable disclosing their disability to their patients. We can hypothesize that PTs, may be hesitant to disclose their disability to other PTs because they fear being seen as less competent or discriminated against and the reality is that when PTs try to hide their disability from their educators and/or employers, they are not receiving the appropriate accommodations and thus, are not able to do their best work. How different might our profession look if instead of perpetuating stereotypes and stigma, we acknowledged their experiences and welcomed them for all that they are?

Fortunately, many within the profession have acknowledged this ongoing problem and are actively making efforts to counter it. Within UIC’s DPT program, there are several ways that students and faculty collaborate to work towards inspiring diversity. For starters, the Diversity, Equity, and Inclusion (DEI) advisory committee is made up of students and faculty who serve to ensure fair and equitable treatment of all students in the program by creating safe and welcoming spaces. Another way the UIC DPT program is working to diversify physical therapy is through the Health and Wellness Academy (HWA). Once a week, UIC DPT students go to a local elementary school to teach children about the importance of healthy eating and physical activity. Having positive interactions with physical therapy at a young age opens doors for these children that might not have been presented otherwise. Finally, UIC incentivizes and rewards students who choose to work on diversity projects by offering a Diversity, Equity, and Inclusion Scholarship award. Many other programs in the country as well as the APTA share in this same commitment to diversity; however, we as a profession, must continue to seek out diversity and encourage belonging for all. 

References:

1.     APTA Physical Therapy Workplace Analysis

2.      Emma Chambers, Anrea Nicole Bowens, C. Scott Bickel. Disability Representation and Disclosure Among Licensed Physical Therapists: A Pilot Study. [Poster presentation]. 2023 APTA Combined Sections Meeting, San Diego, California, United States.

How to Support Anxious Children: Tips for Parents and Caregivers by Psychology Trainee, Lauren Stone

Anxiety is one of the most prevalent mental health challenges among youth today. Research indicates that nearly 9.4% of youth will experience an anxiety disorder at some point in their life (Bitsko et al., 2022). Further, the incidence of anxiety disorders in youth has increased considerably, particularly since the onset of the COVID-19 pandemic (Hafstad et al., 2021; Racine et al., 2020, 2021; Singh et al., 2020). Left untreated or undiagnosed, anxiety can negatively impact a child’s psychological functioning and well-being. Therefore, it’s important to consider the ways that parents and caregivers can help their child cope with their anxiety rather than reinforce it.

What are anxiety disorders?

Anxiety disorders are a group of psychiatric disorders outlined by the fifth edition of the Diagnostic and Statistical Manual (DSM-5-TR; American Psychiatric Association, 2022). The DSM-5-TR distinguishes between seven types of anxiety disorders:

1.   Agoraphobia: Extreme fear or anxiety of a place(s) where escape may be difficult.

2.   Generalized Anxiety Disorder: Excessive worry about everyday life occurrences.

3.   Panic Disorder: Unexpected and repeated anxiety attacks marked by physiological symptoms.

4.   Selective Mutism: An inability to speak in certain social settings.

5.   Separation Anxiety Disorder: Excessive anxiety when separated from family members or close supports.

6.   Social Anxiety Disorder: Irrational anxiety, self-consciousness, and embarrassment related to social interactions.

7.   Specific Phobia: Extreme fear of something that is not actually dangerous.

How can parents and caregivers support their anxious child?

It is natural to feel overwhelmed as a parent or caregiver when your child is struggling with anxiety. Below are just a few of the many different ways that you can help support your child as they learn to manage their anxiety:

1.   Validate your child’s emotions. By validating your child’s emotions, it can help them to feel loved and understood. However, it is important to note that validating your child’s emotions does not equate to agreeing with them. For example, your child could be anxious about going to the dentist. In this example, you can first validate their feelings – “I know that you feel scared to visit the dentist” but at the same time encourage brave behavior – “and I know that you can do this.” Validating your child’s feelings and encouraging brave behavior can help your child develop a sense of confidence in their ability to be brave.

2.   Avoid accommodating your child’s anxious behavior. It can be natural to want to protect your child from their anxiety. However, in the long run, accommodating their anxiety can do more harm than good. The longer their anxious behaviors are maintained and reinforced, the harder it is to extinguish them (Ginsberg et al., 2004). One way parents or caregivers can facilitate and assist in accommodating their child’s anxiety is by providing excessive reassurance to their children. Rather than providing excessive reassurance, try to encourage your child to face their fears in a supportive environment. Research shows that gradual exposure to anxiety triggers can help children overcome their anxiety in the long term.

3.   Ask your child open ended questions. Open ended questions are questions that cannot be answered with a simple “yes” or “no.” Rather, they are questions that encourage your child to discuss and elaborate upon what they are feeling. For example, you can ask, “How did you feel after John said he was moving?” as opposed to, “Were you sad when John said he was moving?” This can help your child reflect on their own emotional experience, which is a crucial factor in effectively managing their anxiety.

4.   Model healthy ways of coping with anxiety. Modeling healthy ways of coping with anxiety is important for children because they often learn through their environment. As a parent or caregiver, you do not have to pretend like you do not experience anxiety. Rather, you can let your children hear and see you manage your anxiety. For example, you can use I feel statements with your children (in a developmentally appropriate way) about your own anxiety experience, such as: “I feel anxious because I may be late for work.” Then, you can model how you cope with your anxiety by stating: “To feel better, I am going to take five deep belly breaths.”

5.   Seek professional help. If you believe that your child’s anxiety is impacting their daily life, it may be necessary to seek professional help. A mental health professional can help your child learn coping strategies, develop healthy habits, and work through their anxiety. To gain a referral, be sure to reach out to your child’s pediatrician.

References:

American Psychiatric Association (Ed.). (2022). Diagnostic and statistical manual of mental disorders: DSM-5-TR (Fifth edition, text revision). American Psychiatric Association Publishing.

Bitsko, R. H., Claussen, A. H., Lichstein, J., Black, L. I., Jones, S. E., Danielson, M. L., ... & Ghandour, R. M. (2022). Mental health surveillance among children—United States, 2013–2019. MMWR supplements, 71(2), 1–42. http://dx.doi.org/10.15585/mmwr.su7102a1

Hafstad, G. S., Sætren, S. S., Wentzel-Larsen, T., & Augusti, E.-M. (2021). Adolescents’ symptoms of anxiety and depression before and during the Covid-19 outbreak – A prospective population-based study of teenagers in Norway. The Lancet Regional Health - Europe, 5, 100093. https://doi.org/10.1016/j.lanepe.2021.100093

Racine, N., Cooke, J. E., Eirich, R., Korczak, D. J., McArthur, B., & Madigan, S. (2020). Child and adolescent mental illness during COVID-19: A rapid review. Psychiatry research, 292, 113307. https://doi.org/10.1016/j.psychres.2020.113307

Racine, N., McArthur, B. A., Cooke, J. E., Eirich, R., Zhu, J., & Madigan, S. (2021). Global prevalence of depressive and anxiety symptoms in children and adolescents during COVID-19: A meta-analysis. JAMA Pediatrics, 175(11), 1142–1150. https://doi.org/10.1001/jamapediatrics.2021.2482

Singh, S., Roy, D., Sinha, K., Parveen, S., Sharma, G., & Joshi, G. (2020). Impact of COVID-19 and lockdown on mental health of children and adolescents: A narrative review with recommendations. Psychiatry Research, 293. https://doi.org/10.1016/j.psychres.2020.113429

Activism & Accessibility by Self-Advocacy Trainee, Claire McNorton

When I started working as a community organizer at Planned Parenthood, one of the first

events I attended was the 2020 Women’s March in downtown Chicago. There are a lot of things

I love about being an organizer… rallies, marches, and other large and loud events are not on

that list. I, of course, understand the importance of large, public demonstrations. Historically,

these demonstrations have literally changed the world. However for someone who is

claustrophobic and easily overwhelmed by loud noises, large public demonstrations are

incredibly overwhelming.

Image Description: A large group of people march through downtown Chicago wearing winter

coats and hats. Three women hold a large pink sign that says “Together We Fight for All” in

white text. Other people hold smaller pink signs. Image Source: DailyHerald, Submitted by Syed Ullah

When George Floyd was murdered, I so badly wanted to participate in the demonstrations all

over the city but just the thought of the crowd would cause my chest to tighten. I felt

unbelievably useless and helpless and almost like I was a part of the problem for not taking

action.

At this point I had recently started my journey as a disability advocate and the pandemic was

beginning to change how we viewed the world and public gathering. I was able to come to terms

with the fact that I should not go to rallies. It does no one any good and I cannot be a good

activist if I am putting myself under that amount of stress. I also realized that there are people

who have a different barrier when it comes to rallies. They have the energy, passion, and desire

to be a part of a large public demonstration; however, these events are not made accessible to

them.

On October 6th Planned Parenthood Illinois Action hosted a rally in Daley Plaza to protest the

passage of SB 8 in Texas which implemented a six week abortion ban. I worked with other

disability advocates to create a checklist of things that every rally should have to improve

accessibility. I then worked down the list to make sure we had what we needed to make our

space more accessible to disabled folks. For the first time, one of our rallies had ASL

interpreters, screens and a CART provider, a designated area near the stage with seating, and

our stage had a ramp.

In organizing we often talk about “multiplying our impact”. An example of this is asking friends to

vote. If you vote, that’s great! But if you bring three friends to the poll with you? That is even

better! I do not think I will ever be a person who can attend rallies or marches comfortably, as

much as I may want to. If I must attend one for work you will find me off to the side enjoying

from a distance. However, I hope that by sharing my accessibility guide below, my impact will be

multiplied. The guide includes a checklist as well as a list of vendors in the Chicagoland area.

So to those of you who like to march and rally? Have an amazing time! I will be here planning

and writing and advocating in meetings. As Maxine Waters said “Everyone has a part to play.

We have the power.”

Photo Credit: Jo Greep

Image Description: Me standing with my two friends at a rally. We are all wearing masks and

posing with a megaphone.

Checklist

• Accessible seating near stage

  • Chairs (Include chairs that fit 350+ lbs)

  • Room for wheelchairs

• ASL interpreter

  • Provide any lyrics/words to poems 48 hours in advance

  • Arrive 15 minutes prior to event

  • Space for interpreter on or near stage

• CART Services

  • Table and chair

  • Plug for laptop

• Screen

  • Ability to connect to CART laptop

• Ramped Stage

  • Not all ramps are ADA compliant… make sure slope is not too steep

• Break space

• Bathroom access

  • Inside nearby or porta potty

• Accessibility assistants

  • 2 for accessibility area

  • 1 for crowd

• Service animal space

  • Water dish

Vendor List

● CART

○ Cathy Armburst Rajcan

○ Email: efficiencycryptg@cs.com

● ASL Interpreter

○ Reba Pope - Access Living

■ (note: Reba is Access Living’s in house interpreter but she has many

connections)

○ rpope@accessliving.org

● Screens

○ Ryan Nice - Sound Investment AV

○ Email: rnice@soundinvestmentav.com