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

“To Infinity and Beyond” Let’s Discuss Gestalt Language Processors By Speech Language Trainee, Megal Magdaleno

It wasn’t until recently, as I began to work more deeply with Autistic children, that I learned what Gestalt Language Processors (GLPs) were. I remember identifying this type of language processing (way of learning language) as Echolalia, which is the repetition of language in whole chunks. However, I was taught to ignore and decrease this type of language as it disrupted structured spaces, like a classroom, and was considered “unnatural”. I am happy to say that after much research and clinical experience, I now understand the shifts our healthcare professionals are taking to better support GLPs. In this blog post, I will discuss further who and what considers someone a GLP, what healthcare professionals can do to best support them, and share additional resources to learn more.

So what is GLP? Well according to Marge Blanc and The Communication Development Center, GLP is just one way a child can develop their language. Most children learn language through Analytic Language Processing (ALP), which means that children are learning language through single units or individual words that gradually move to sentences. However, many neurodiverse individuals are GLPs, which means they develop language through memorized chunks or phrases and then move to single words. I remember a colleague of mine once described the two as so: ALPs learn language brick by brick (word by word) to eventually build their house (using phrases/sentences); whereas GLPs already have their houses built. 

Now that we have a basic understanding of the differences between GLPs and ALPs, let’s talk about what we can do to best support them. When working with GLPs we must use our detective hats to figure out what the gestalt used really means. Remember, we shouldn’t take an individual's gestalts literally because they can serve many communicative functions. For example, if a child says “To infinity and beyond”, it is our job to understand what they really mean. A child can use that phrase to mean “Let’s go” or “Let’s watch Toy Story” etc. In the process of us being detectives, we must also remember to always acknowledge whatever language the individual is producing, even if we do not understand it. This can be seen through head nodding and verbal feedback “I hear you”. All language is beautiful language and it’s our job to honor and validate whatever type the individual is using. Lastly, when interacting with GLPs we must make an effort to decrease the number of questions we present and instead use declarative statements. This switch promotes the use of spontaneous language and allows the individual to receive further examples of the language they can use themselves. For example, instead of asking “do you like apples or bananas” we can say “I love apples” or “wow look at those green apples, so yummy!”. 

Although there is so much more information I did not include in this post, I hope this at least sparked a new interest for you to consider working with neurodiverse populations. To further your understanding, I have provided some resources below: 

1. How can I explain GLP to parents?

2. Where can I learn more about GLPs?

3. Are there any social media accounts that I can follow? 

1. https://www.instagram.com/meaningfulspeech/

2. https://www.instagram.com/bohospeechie/ 

3. https://podcasts.apple.com/us/podcast/two-sides-of-the-spectrum/id1514489746?i=1000549763022 

Navigating Challenges: Korean Immigrant Parents of Children with Autism in the U.S. by Special Ed Trainee, Namhee Kim

The Korean American community, including immigrants, has experienced remarkable growth in recent years, becoming one of the fastest growing and largest immigrant populations in the United States (Pew Research Center, 2019). Along with this growth, there has been a notable increase in the number of Korean immigrant parents raising children with autism in the country (Center for Disease Control and Prevention, 2018).

Figure. Korean Immigrant Population in the United States, 1980-2019 Migration Policy Institute. https://www.migrationpolicy.org/article/korean-immigrants-united-states)

Data from U.S. Census Bureau 2010 and 2019 American Community Survey (ACS), and Campbell J. Gibson and Kay Jung, “Historical Census Statistics on the Foreign-born Population of the United States”. 1850-2000”

While the U.S. offers opportunities and resources for families with children on the autism spectrum, the cultural adaptation process and language barriers can present significant challenges for these parents. In this blog, I will explore the challenges faced by Korean immigrant parents, focusing on the language barrier and its impact on accessing services for their children with autism. Additionally, I will delve into the essential role played by the Korean community church in providing support and fostering emotional well-being for these parents.

1. Language Barriers: A Major Stressor

As a counselor working with nonprofit organizations in Chicago, I have had the privilege of witnessing firsthand the struggles of Korean immigrant parents in navigating the complex systems of autism services in the U.S. Language barriers frequently arise as a major stressor, hindering effective communication between parents and service providers. Understanding the terminology used in special education, such as Individual Education Plans (IEPs), can be particularly challenging for parents with limited English proficiency. Consequently, some parents opt to confide their concerns in other Korean parents of children with disabilities within their community, seeking solace and understanding in shared experiences. While the sense of community support is valuable, avoiding direct communication with English-speaking service providers may impede the effective addressing of their children's behavioral and academic challenges.

2. The Quest for Bilingual Support

While conducting interviews with Korean immigrant parents of children with autism, a recurring theme emerged: the yearning for access to Korean bilingual professionals who could offer specialized support. Parents residing in remote areas expressed a desire to relocate to metropolitan cities like Los Angeles, New York, or Chicago, where the availability of Korean-speaking Board-Certified Behavior Analysts (BCBAs) and other professionals would be more prevalent. Having service providers who not only understand their language but also their cultural nuances can significantly impact their children's educational experiences and overall support network. It is a testament to the importance of cultural competence and inclusive practices in the field of autism services.

3. The Church as a Support System

Amidst the challenges posed by cultural adaptation and language barriers, Korean community churches have emerged as indispensable support systems for parents and families. These churches serve as vital hubs where Korean immigrant parents can connect with one another, forming a close-knit community that shares their experiences, challenges, and triumphs concerning their children's education and services (Kim& Kim, 2017). The benefits of these connections extend beyond religious activities, as the churches often host gatherings on national holidays (e.g., New Year, Christmas), events like birthdays, and prayer groups. In these supportive environments, parents find emotional comfort and camaraderie, knowing they are not alone in their journey. The sense of belonging and the assurance of a shared cultural background (Kim et al., 2010) create a safe space for expressing concerns and seeking advice from fellow parents.

4. A Call for Research and Support

Despite the growing number of Korean immigrant communities and parents raising children with disabilities, there remains a notable lack of research that specifically investigates the stressors arising from cultural and linguistic barriers. As we recognize the unique challenges faced by these parents, it is crucial to invest in research efforts that delve deeper into their experiences. Understanding the specific needs of Korean parents with language barriers can inform the development of culturally competent interventions, thereby facilitating access to services and support for their children with autism. Additionally, we must continue to nurture the support systems that have proven to be instrumental in easing their journey, such as the Korean community church and other community-based initiatives.

Korean immigrant parents raising children with autism in the U.S. encounter distinctive challenges stemming from cultural adaptation and language barriers. The language barrier poses significant stress, affecting their ability to effectively communicate with service providers and access appropriate resources.

References

1.           Centers for Disease Control and Prevention. (2018). Prevalence of autism spectrum disorder among children aged 8 years : Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Mortality Morbidity and Weekly Report Surveillance Summaries, 67(6),1–23.

2.           Kim, J., & Kim, S. (2017). Positioning of Korean immigrant mothers of children with disabilities. International Journal of Multicultural Education, 19, 41–64. https://doi.org/10.18251/ijme.v19i3.1362

3.           3. Migration Policy Institute. (2019). Korean immigrants in the United States. https://www.migrationpolicy.org/article/korean-immigrants-united-states-2017

4.           4. Pew Research Center. (2019). Key facts about Asian origin groups in the U.S. https://www.pewresearch.org/fact-tank/2019/05/22/ key-facts-about-asian-origin-groups-in-the-u-s/

Expectation: A strong belief that something will happen or be the case in the future by Megan Best, Special Education Trainee

Expectations. School expectations. Job expectations. Clear expectations. Unwritten expectations. Expectations of others. Expectations of self. Whatever our place in life, there are always expectations. As a special education teacher, there were countless expectations. Expectations for me as a teacher by the school, families, and state. Expectations of myself for doing what was best for my students, their families, and my colleagues. I also held expectations for my students. A lesson I learned quickly is the higher you set your expectations, the more likely students meet those expectations. I expected my students to achieve success, find value and confidence in themselves, while also expecting myself and my team to individually support students to help them reach their goals. I would say that as a special education teacher, I held high expectations for students.

As a special education teacher in multiple settings, as well as a special education administrator, I found that not everyone is quick to discuss “high expectations” when supporting individuals with intellectual and developmental disabilities. Often, future planning options were discredited because goals were deemed “impossible” or “infeasible”. But, can adults with intellectual and developmental disabilities be gainfully employed? Yes. Can adults with intellectual and developmental disabilities pursue higher education? Yes. Can adults with intellectual and developmental disabilities live independently in their communities? Yes. The answer is always yes, but the solution may require creative planning and interagency collaboration.

When I reflect on the field of special education, I think there is so much more to achieve. I don’t hold all the answers or solutions (some days I wonder if I hold any), but I do have high expectations that as a field we need to honor families, work collaboratively, and be responsive to students' preferences, strengths, goals and dreams. We need to allow students the opportunity to take learning risks, facilitate opportunities to develop meaningful relationships, and dream big, incredible dreams for adulthood. We need to advocate for inclusive practices, which in turn, may yield a more inclusive society. It sounds like a lot- because it can be a lot.

What kind of a teacher would I be if I didn’t share a tool to support others in this journey? 😉 A tool that I would love to share is a conceptual framework titled, “Universal Design for Transition.” It is an incredible tool to support the work of holding high expectations for students with disabilities to be exposed and engaged with grade-level standards, functional skills, and achieving their transition goals. Building off of Universal Design for Learning (UDL), which emphasizes multiple means of expression, engagement, and representation, it also includes multiple means of assessment, multiple means of life domains, multiple resources/perspectives, and individual self-determination. A book that I would recommend to any (and every) secondary teacher supporting students with intellectual and developmental disabilities is titled, Universal Design for Transition: A Roadmap for Planning and Instruction. It provides tangible examples and excellent tools to support “doing it all” to help our students and their families achieve post-secondary goals and success. It supports raising the bar and setting those expectations high. I wish I had had it earlier in my career!

Expectations. We all have them, for others and ourselves. May our expectations be raised so that we can continue to work toward an inclusive society that values each individual, disabled or non-disabled.

Disability Accommodations in Higher Education: “It’s not one size fits all.” By Cassandra W., LEND disability studies trainee

The following interview is a partial transcript between LEND trainee Cassandra and Em (she/they), an autistic person navigating the complicated nature of higher education. Cassandra and Em connected through the 2021 doctoral student cohort.

*To protect privacy some names have been changed

[Image: Black chalkboard with yellow, pink, and blue scribbles]

CW: Thank you for joining me today as part of a classroom requirement for a lender, I will be interviewing you just asking you some basic questions about yourself and your experiences as an autistic person in higher ed. So, do you mind telling us a little bit about yourself, in general?

Em: So yeah, I, as you said, like, I'm autistic person, I started this graduate program at the start of last school year. So, this is my second year finishing the third semester.

CW: Great. Can you tell us like some of your interests, like research areas of interest?

Em: Yeah, so as an autistic person, I am interested in research pertaining to autistic folks, but I, want to do research that I feel like is more beneficial to actual autistic people. And a lot of my research interests overlaps with, like my own identity and experience. I'm working on a master's thesis right now, that looks into how queer and trans autistic folks create their sexual gender and autistic identities.

CW:  Yeah, that's interesting. What sparked your interest in that? Is there a research gap for queer and autistic folks?

Em: I have all those identities, I identify as queer and gender queer. When I look into experiences of like, actual autistic people, like online talking about their identities, it makes a lot of sense, but then whenever I look up these topics, more on the academic side of things, it is very medicalized, it tends to be very medicalized. Like trying to figure out why they like there's this trend but ends up kind of more pathologizing instead of celebrating identity development. For instance, kind of almost treating the medicalized idea of gender dysphoria as a co-occurrence with being autistic. Which I feel like can kind of be problematic, like, that's not saying like, autistic people don't experience gender dysphoria, but is the way it is medicalized. But that assumes that only like occurs in this certain way which I find problematic.

CW: I'm curious, as an autistic person, what's your experience been like? Whether good or bad, and maybe you could provide a few examples?

Em: Yeah, I would say overall, it's been good. I wasn't formally diagnosed until high school. And I wasn't really given accommodations until then, either. But accommodations were kind of limited to things like standardized testing. It wasn't really considered like, oh I also get extended time when it comes to just the end of the unit tests that teachers make and assign or with assignments. And so that was often a struggle, and I had to advocate for myself because I did not have good case managers.

And when I got to college, I actually did dual enrollment. This occurred with dual enrollment as well, but it was a given that extended time means that you go to a separate testing location, regardless of whether it is a brief quiz or a test or whatever, so that you have more time, they have the quiet environment. But I still had instances where I struggled some. When I first went to college, I went to a very small liberal arts college and they had a great Disability Resource Center. And in retrospect, I think that was because the school so was so small, if I was ever having any issues with anything, I could just walk in and talk to one of the two directors who worked there, and they were the only employees, they just always had open office hours like that, and would come up with very creative solutions. In fact, I've come back to those ideas since I came into grad school like using PDF to text readers to like to listen to readings to save some time, instead of trying to just sit down and read everything.

Em: So, when it got to the following fall semester, where I was having a lot of my executive functioning just completely slow down due to the pandemic circumstances. And a lot of people don't understand that executive functioning really, in its most basic terms, just means that like, your brain functions differently and sometimes slower. A lot of people equated with time management issues, which is not necessarily the case. For all autistic people, you can have issues with time management and not have issues with executive functioning and vice versa. So I was having to basically advocate for myself that I had extended time accommodations, and to get more time to complete a final and I ended up getting like a lot the patronizing language of ‘oh, you should be lucky that you got this because the real world isn't this way,’ when in fact, the real word is, because I am allowed accommodations. And I felt like the, that spring semester, spring 2020, when the pandemic first started, I also had to get incomplete in a class and I had all these issues, and the DRC wasn't really there to help me.

CW: It sounds like you have had to do a lot of self-advocacy. If you had to give recommendations to other autistic folks who are in higher ed, is there something that you would really want them to know about self-advocating?

Em: That's a good question. Because I think the unfortunate reality is self-advocacy to an extent like is self-taught. It is a survival skill. I think what I will say is that, this doesn't quite answer your question, but if this was to be advice in terms of like, how to survive college, I would say it is very helpful to try to meet with Disability Resource Centers to figure out how they handle accommodations. I remember when I was touring undergrad schools, there was this one private women's college I considered going to, but since it was private, they're like, ‘oh if you have accommodation needs, you just talk to like the dean of your school, and they'll handle it for you.’ That is such a big red flag for me. There wasn't actually a department? So, just try to go to a school that has good Disability Resource Center, and then go ahead and try to make sure you can get all the accommodations that you can, so if you run into a situation where you need to use them, you can say, ‘Hey, I have this.’

CW: What is your experience in our department been like? Has it been what you've hoped for considering that they have large disability presence?

Em: I have accommodations, but it's been hard to figure out I guess, it’s not as straightforward as how to implement those as it is with the way undergrad is set up. And so, it's it has really come down to more the pedagogy that like instructors have. So, for example, the way Dr. Smith and Dr. Miller’s classes were set up were very beneficial. And I found very helpful, because you had that two- or three-day grace period and those in instructors in general, were very understanding if you needed more time, but they also [were] trying to break away as much from the academic institution as possible. So, those classes I felt very comfortable in and they're very big on expressing your access needs and stuff like that.

And then there was course A, which was a mess. We knew we had a final, but we weren't actually told what that final was until the last five minutes of the last class. And that just ended up being a mess for me as it was for everyone. I'm recalling the group chat of where there were people who like pulled 48 hours to get everything done on time.

CW: Yeah, I remember that.

Em: I never stayed up past midnight to complete assignments until that semester. I remember I was like, up until like 1:30 AM. And it was Saturday morning, and I ended up emailing Dr. Smith, I was like ‘Hey, I'm not done with your assignment, because it was now the end of the two day grace period. I'll get this done like later today.’ And Dr. Smith emailed me back, ‘That's what your accommodations are for, when you run into situations like this.’ That was the first time I had someone really acknowledged what those accommodations were really for. So many instructors are like, ‘Oh, you can get extended time, but you need to let me know like way in advance if you need the extended time.’ Not realizing that sometimes you don't know how long things will take you some time, and all these other factors that just come from having a disability.

CW: So, if I hear what you're saying is: if you could change university systems for autistic folks, you’d recommend more flexibility in deadlines, greater attention to the accommodations and more awareness of that people have different disabilities?

Em: Yeah, there is definitely power with more awareness of different disabilities. Because one thing I personally noticed, there seems to be a greater understanding of disability. But for instance, people might have more understanding of physical disabilities, and they don't quite understand what it's like, for invisible disabilities. That's just an observation I'm making. It's not in terms of favoring one disability over the other, it's actually like they're more specialized in one area, that they don't quite realize that it's not a one size fits all.

              I would also add that while it is important to have self-advocacy skills, I would personally benefit from having someone to advocate for me on behalf. When I finally shared with my advisor what had happened to me at the end of last Fall semester she was like ‘if anything ends up happening to you like that again please let me know and I will help you advocate for you.” And like, I never had anyone tell me that before, because sometimes it is a lot to be able to self-advocate for yourself, and people don’t listen. It is stressful and to be able to have an ally who is perceived as being “higher up” to be able to do that for you when you need it, it is really helpful. I think we need more allies to help advocate for disabled students when self-advocacy is not enough. 

Special thanks to Em for her time and sharing her perspective.

Cuidando a Mama, Caring for Mom By: Physical Therapy Trainee, Ale Hernandez

How to be a good mother by Jake Ghar (2022); pictured is a mother holding her son tight both with eyes closed and smiling faces.

My Abuela, grandmother, always used to tell me “Take care of your mom, you only have one.” Of course, I understood how important my mom was to me; however, it didn’t really sink in until I saw the pain my mom went through after losing her mom. In many cultures, mothers take on the caregiver role for all their children and family members. They are dependable, caring, loving, and selfless. Mothers all around the world, give as much as they can to make sure their children are well taken care of. These demands often surpass one’s ability to do alone and are far more demanding for a mother caring for a child with a lifelong disability.

A qualitative study was done on Latina mothers caring for a child with and without an intellectual and developmental disability (IDD). What they found is that many Latina mothers from both groups are more than likely to be immigrants from low socio-economic backgrounds and have language barriers, but have a rich social support compared to non-Latina caregivers.2 These characteristics place Latina mothers in a position where they must work three times as hard to receive and provide support for their child. Many of these mothers are full-time caregivers for the rest of their child’s life into adulthood.

Services slowly start to decline after 18 years old and become more difficult to receive for children with IDD, but they are still available, nonetheless. However, the maternal care really falls off after a child turns 3 years old and ages out of early intervention where there has been increased support in providing maternal care for mothers that are more vulnerable to mental health struggles. The qualitative study determined that Latina mothers caring for a child with IDD are more than likely to be obese and experience depression, arthritis, hypertension, and overall, more poor health outcomes when compared to other Latina mothers of the same age.2 In addition, they reported that they are less likely to see a doctor or take advantage of respite care as it may distract them from caring for their child and feeling a sense of guilt.

It is important that as interdisciplinary healthcare professionals, we are also providing resources and supports to mothers, as they are most often the primary caregiver and can only provide lifelong support if they, themselves are healthy. By caring for the health of mothers, it will also reduce healthcare costs for both the mother and child and allow the child to continue to have their biggest advocate as they transition into adulthood.

As a student physical therapist, I have learned a lot about how important the biopsychosocial model is because it is a framework that integrates different aspects that influence a patient’s wellbeing. As individuals we are multi-dimensional and the communication between the primary and secondary patients’ teams are important. The teams do not only include their doctors, but also their family. We are only able to spend anywhere from 2-3hrs/week with patients, which is not enough to provide change in their lives; thus, the goal is to understand the patient/family needs and equip them best to implement change on their own. One of the beauties of working in physical therapy is that we often see the patient more than they see their primary doctor and maybe even some of their family members. We can build connections and understand the struggles they may be facing.

Being a LEND trainee has taught me to take advantage of these relationships and be an advocate for not only our patients but also their families. LEND has provided me with a ton of resources regarding disability that I would have otherwise never heard of. It has also allowed me to understand some of the family struggles, and I hope that I can provide resources and be a person that mothers can trust because we only have one.

Reference

1.     Ghar Jake. How to Be a Good Mother .; 2022. https://ideas.hallmark.com/articles/encouragement-ideas/how-to-be-a-good-mother/ . Accessed 2022.

2.     Magaña S, Li H, Miranda E, Paradiso de Sayu R. Improving health behaviours of Latina mothers of youths and adults with intellectual and developmental disabilities. Journal of intellectual disability research. 2015;59(5):397-410. doi:10.1111/jir.12139

Impacts of Sociocultural and Systemic Factors on Diagnosis and Treatment of ASD: What Physicians Need to Know by Public Health Trainee, Lisset G. Perez Carapia

My nephew was diagnosed with Autism Spectrum Disorder (ASD) when he was four. Once I began my graduate program, I began to have access to information regarding neurodevelopmental disorders and disabilities. Throughout my courses, I learned that the diagnostic rates for Latino children are lower and that Latino children are more likely to receive a late diagnosis when compared to white children (Coffield et al., 2021).

I am currently in a graduate public health program with a concentration in Maternal and Child Health. A significant focus in my academic career has been immigrant health and health literacy in the Latino community. As I first began trying to educate myself more on this topic, I realized that disabilities are not openly discussed in the Latino community I grew up in. Before I entered my graduate program at 23, I didn't know the definition of ASD. After learning about ASD, I decided to immerse myself in literature, and this is what I found.

            Hispanic/Latino Americans are the second largest ethnic group in the United States. In 2020, the Hispanic/Latino population reached 62.1 million, accounting for 19% of the country's population (Funk & Lopez, 2022). This number will only continue to rise as the years go by.

Research suggests that this neurodevelopmental disorder can be equally found across all ethnic groups, but there are consistent inequities in the diagnosis and treatment of non-White groups (Rivera-Figueroa, 2022). It is also important to note that both non-white and white parents experience similar barriers when accessing services for their children with ASD. However, the reasons vastly differ between groups (Rivera-Figueroa, 2022). Sociocultural factors influence how and when immigrant families seek diagnosis, but what does this mean?

Physicians and care providers must become familiar with the perceptions surrounding ASD among immigrant Latino parents and caregivers. Both qualitative and quantitative research suggests that many Latino parents attribute ASD symptoms to bad parenting or poor family dynamics. Unfortunately, research also suggests that Latino communities still perceive disabilities as a shameful experience that must not be spoken about (Rivera-Figueroa, 2022). Another significant barrier in the Latino community is gender roles. As we can see, culture plays a large part in perceptions. A study by Zuckerman (2014) revealed that mothers felt like the fathers saw having an autistic child as weak and as a poor reflection of them as a man. This often leads to the mother being the primary caregiver of the child which consequently leads to fathers being uncooperative in the diagnostic process and passive with care (Zuckerman et al., 2014).

Systemic factors play a significant role in diagnosis and treatment. Physicians and care providers must be aware of the lack of representation in ASD research that Latino children and their families encounter (Rivera-Figueroa, 2022). This highly limits the understanding of the specific needs of this community. Awareness of the language barriers many Latino families face is also essential. In their article, Rivera-Figueroa et al. (2022) explain that parents of children with ASD who were only Spanish-speaking received low-quality information and education about ASD symptoms, treatment plans, and resources. Ethnographic studies have shown that families have hesitated to advocate for their children due to fear of retaliation and being shamed or stigmatized. It was also found that those parents who did decide to advocate were ultimately questioned, underestimated, and ultimately denied access to services by school professionals (Rivera-Figueroa, 2022).

Overall, these factors contribute to the delay in evaluation and diagnosis. Consequently, this means Latino children with ASD receive early intervention at lower rates when compared to their white peers. In addition, a diagnosis of Autism can be a scary and challenging time for many families. Therefore, it is vital that families and their children feel supported and safe when walking into any clinical space.

Lastly, physicians should play into this communities' most significant protective factor, familialismo. This is a term that describes the family-centered values across the Latino community. Many live in multigenerational homes and have extended family members who make up a tightly-knit support system. As a result, family-centered values have been linked to a better quality of life (Rivera-Figueroa, 2022).

My goal with this piece was to raise awareness on this subject. I hope each of you who took the time to read this learned something new.

References:

Coffield, C., Deborah, S., Harris, J., & Jimenez, M. (2021, December). Exploring the Experiences of Families of Latino Children Newly Diagnosed With Autism Spectrum Disorder. Journal of Developmental & Behavioral Pediatrics. Retrieved January 27, 2023, from https://doi.org/10.1097/DBP.0000000000000965

Funk, C., & Lopez, M. H. (2022, June 16). 1. A brief statistical portrait of U.S. hispanics. Pew Research Center Science & Society. Retrieved November 11, 2022, from https://www.pewresearch.org/science/2022/06/14/a-brief-statistical-portrait-of-u-s-hispanics/

Rivera-Figueroa, K., Marfo, N. Y., & Eigsti, I.-M. (2022). Parental perceptions of autism spectrum disorder in Latinx and black sociocultural contexts: A systematic review. American Journal on Intellectual and Developmental Disabilities, 127(1), 42–63. https://doi.org/10.1352/1944-7558-127.1.42

Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents' perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308. https://doi.org/10.1016/j.acap.2013.12.004