Volition by Amy Satterthwaite, Occupational Therapy Trainee

Of your own volition.

You’ve more than likely heard this phrase and probably understand what it means, but you may not understand its potency.

An important part of my occupational therapy education, and a term my classmates and I have been inundated with since our first day, is client-centeredness. Essentially, this means we will prioritize what is important and meaningful to the client. It also involves the use of our clients’ volition.

Let’s begin by asking ourselves: “what is volition?”

According to Gary Kielhofner, a prominent occupational therapy theorist, volition is the power of choosing or determining. It is synonymous with conscious choice, autonomy, self-determination, and free will. Extending this further, I believe volition refers to decisions and preferences based on deep and personal attachment.

Personally, there’s a lot of things I do that are not of my own volition. I don’t particularly enjoy doing the dishes, checking my email, or paying my credit card bill. In high school, I never wanted to run sprints at practice. And as a kid, I certainly did not complete chores of my own free will. In these cases, I am acting on motivation, not volition.

Let’s break down the difference. Motivation is focused on reward (or in some cases, avoiding punishment). As a kid, receiving an allowance for completing your chores is a reward. Having a clean kitchen is a reward. Volition invokes significantly more than that. Volition refers to an inner desire according to previous experiences, interests, and values. A deep and personal attachment.

I am extremely passionate about occupational therapy. Passionate enough to take out student loans, anyways. I truly believe that occupational therapists can play a large role in improving their clients’ participation in daily life and I want to spend my professional career being a part of that.

Volition, not motivation, is the reason why I often stay up until midnight completing assignments, watching lecture videos, and reading textbooks. I want to become the best OT I can be and because I’m utilizing my volition, I’m able to accomplish much more than if my only motivation was to receive good grades.

I concede, not every task can or will invoke volition. Good luck finding a child that is passionate about doing the dishes. In any case, volition is different for everyone. If you find and utilize volition where you can, whether it’s as an occupational therapist, other healthcare provider, or in your everyday life, you will perform more effectively and joyously.

More on volition:

·       https://www.psychologytoday.com/us/blog/dont-delay/201906/volitional-resource-defeat-procrastination-meaning

·       https://sloanreview.mit.edu/article/going-beyond-motivation-to-the-power-of-volition/

·       https://paintedbrain.org/mental-health/volition-occupational-therapys-unique-understanding-of-the-human-motivation-for-action/

Health and Wellness Academy: More than an “Independent Study” Course at UIC by Physical Therapy Trainee, Elisa Royer

To be honest, I originally joined Health and Wellness Academy (HWA), an elective that provides nutrition and physical activity education to the kids that attend Altus Academy in Chicago, to fulfill a portfolio credit for the DPT program I am a part of at UIC. However, I obtained a lot more than some class credit during my semester in HWA.

Altus is a non-profit, private elementary school that serves the children from minority populations in the Chicago area. The Altus population is mainly made of up children from first-generation college graduate families, minority groups, and low-income households. This institution is made up of 1st through 8th graders who are 63% Hispanic and 37% African American. Altus aims to provide children from historically challenging neighborhoods a fair chance at opportunities with regards to schooling through providing an integrated, liberal arts-based, and project-based education.

I learned not only how to provide the underserved youth of Altus Academy education on nutrition and physical activity that they would otherwise not receive, but I also learned the history behind why I was providing education to these students specifically. I think a lot of time during my undergraduate education, I participated in courses or activities to fulfill a credit, but HWA reminded me of the importance of and had me questioning the “why” behind each course I have since enrolled in.  

During this course, through podcasts, readings, and videos, I learned how several health disparities flourished as a result of the history of extreme segregation that occurred during colonization of major urban areas. The course materials gave me perspective on how Chicago neighborhoods developed, how resources were distributed, and what effects this initial set-up of access to resources continues to have on the members of these communities today.

Based on the health disparities of the members of the neighborhoods that Altus serves, HWA is a course that brings current UIC faculty (HWA is headed by the talented Lindsey Strieter) and students to Altus weekly to address these disparities via prevention and wellness strategies. Each week the hour with the kids begins with a nutrition segment. This includes education regarding food, such as how much water you should drink per day, strategies to fulfill your vegetable requirements if you haven’t had any by lunch time, etc. The course then puts this education into practice by providing students with the resources to make their own healthy snack they can indulge in during class.

The second part of the hour with the students is education regarding physical activity, such as alternatives to playing video games or watching television after school. This part of the hour is also an opportunity for students to learn about and practice different skills for a variety of sports, exercises to target certain muscles in the body etc. At the end of the semester, the students were able to apply what they learned by designing and demonstrating their own exercise program to their peers.

HWA not only gave me the opportunity to learn about how access to certain resources has created health disparities in those of certain populations, but it has also given me a platform to implement strategies to address and attempt to reverse these effects. As a future physical therapist, HWA has given me the resources to explore the wellness needs of whatever community I serve in the future. The course has also given me a foundation of tools to use to implement preventative strategies to promote wellness for those that have a need in the future. 

That said, if you want to take a course for more than obtaining credit hours and have a passion for promoting wellness in the youth of Chicago, I’d register for HWA.

Sources:

https://altusacademy.org/mission-and-vision

This is a Nursing S.O.S. Samantha Lieven, MSN RN

Let me tell you…it has been a wild few years for nurses. We have dealt with some of the most extreme and precarious conditions since the start of the COVID-19 pandemic. Nurses in all different types of settings are being hit hard with a lack of supplies, support, pay, and staff. Since the beginning of the pandemic there has been a massive exodus of nurses not only leaving their jobs, but leaving the profession itself.

One of the hardest hit settings for nurse shortages has been home care. As a nurse who used to work in the home care setting, the amount of staff that was working was already scarce to begin with. I used to work at a children’s group home and respite care that provided care for children with complex medical needs 24/7. I can vouch that even before the pandemic we were always short staffed and the pay was nowhere near what you should be compensated. But at the end of the day who suffers the most? The kiddos.

The COVID-19 pandemic has highlighted the devastating conditions in the homecare setting for families caring for children with complex needs. An article in the New York Times (Alcorn, 2021), stated that almost half of medically fragile children, “had lost home health care services during the pandemic”. These parents are having to become full time caregivers AND the nurse for their children with no extra support or compensation. No sleep. No breaks. THESE ARE DANGEROUS CONDITIONS. The stories portrayed of families’ conditions in the New York Times article by Ted Alcorn are heart breaking. No family should have to suffer and fight just to provide basic needs to their child. They deserve better. This is a nursing S.O.S.

Here are a few resources that help & support families of children with complex needs:

UIC Division of Specialized Care for Children

IL LEND Parent Support Group

The Arc of Illinois  

The Raise Wage Act

References

Alcorn, T. (2021). To keep their son alive, they sleep in shifts and hope a nurse shows up. New York Times. https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html

The Basics Behind Reading Interventions for Autism Spectrum Disorder By Rebekah Bosley M.S. CCC-SLP, Speech Language Pathology Trainee

Reading is an activity that has been around for thousands of years and is an integral part of our daily lives. For example, children like to have their favorite storybooks read to them by their caregivers, adults read fiction and non-fiction books for pleasure and work, and college students read textbook after textbook because it is a requirement of being a student. Much goes into teaching an individual how to read; just ask your local elementary teacher. However, unless you are a clinical interventionist, you may not know that reading can be used as an intervention tool to help individuals increase proficiency in language skills such as receptive and expressive vocabulary, comprehension, and language growth. Some speech-language pathologists use storybook reading to target specific speech sounds (see Speech Time Fun's Blog). In this blog, we will focus on a specific reading intervention: Reading to Engage Children with Autism in Language and Learning (RECALL).

Dialogic reading is an interactive style of reading in which the adult works to actively engage the child in storybook interaction. This was originally discussed and researched in the 1980s to 1990s by Dr. Whitehurst and colleagues (Arnold et al., 1994; G. J. Whitehurst et al., 1988; Grover J. Whitehurst et al., 1994). A recent systematic review by Towson and colleagues (2021) found that SIBR overall produced positive improvements in language and communication outcomes in the following populations: children with Autism Spectrum Disorder (ASD; Fleury et al., 2014; Fleury & Schwartz, 2017; Whalon et al., 2013, 2015, 2016), children with Intellectual and Developmental Disabilities such as Down syndrome (DS; Quinn et al., 2020), children with Developmental Delay (DD; Towson et al., 2016) and children with speech and/or language impairment (Wilcox et al., 2020).

Dr. Kelly Whalon and colleagues (Whalon et al., 2015) created a modified version of the dialogic reading intervention called Reading to Engage Children with Autism in Language and Learning (RECALL). RECALL incorporates the hallmark features of dialogic reading, including the CROWD (Completion, Recall, Open-ended, Wh-, and Recall) questions and the PEEP (Prompt, Evaluate, Expand, and Praise) sequence. In addition, the novel features of RECALL include adding two additional question types (Wh-Inference and Emotion Identification), initiation bids, joint attention bids, and a prompting hierarchy. The additional questions, bids, and prompting hierarchy were developed to target areas of difficulty for children with ASD.

The prompting hierarchy was developed with a least-to-most prompting strategy in mind for the child with ASD and included answer options with visuals. For example, the least-to-most prompting hierarchy in which the question (e.g., "What is the dog doing?") is initially asked by the interventionist. If the child with ASD gives no response or an incorrect response (e.g., the correct answer is "running"), then three visuals are provided to help aid in answering the question and the question is asked again (e.g., "What is the dog doing?"). The visuals might include a picture or clip art of a dog running, sleeping, or eating. If the child with ASD does not answer the question, the interventionist continues through the prompting hierarchy by removing visuals as they progress through the hierarchy.

RECALL has since been applied to parents (Whalon et al., 2016) and in a randomized control trial  (Lo & Shum, 2021). More research is needed to determine at what age and frequency RECALL will be effective for children with ASD. Therefore, if you are an interventionist, I recommend looking into the Lo & Shum, 2021 and Whalon et al., 2013, 2015, 2016 studies to see if RECALL might be an effective intervention method for your caseload. Likewise, if you are a parent, I recommend speaking with your interventionist to see if RECALL might be a possibility for your child with ASD.

By: Rebekah Bosley M.S. CCC-SLP, Speech Language Pathology Trainee, Ph.D. Student in Speech Hearing Science Department at the University of Illinois Urbana-Champaign

References

Arnold, D. H., Lonigan, C. J., Whitehurst, G. J., & Epstein, J. N. (1994). Accelerating Language Development Through Picture Book Reading: Replication and Extension to a Videotape Training Format. Journal of Educational Psychology, 86(2), 235–243. https://doi.org/10.1037/0022-0663.86.2.235

Fleury, V. P., Miramontez, S. H., Hudson, R. F., & Schwartz, I. S. (2014). Promoting active participation in book reading for preschoolers with Autism Spectrum Disorder: A preliminary study. Child Language Teaching and Therapy, 30(3), 273–288. https://doi.org/10.1177/0265659013514069

Fleury, V. P., & Schwartz, I. S. (2017). A Modified Dialogic Reading Intervention for Preschool Children With Autism Spectrum Disorder. Topics in Early Childhood Special Education, 37(1), 16–28. https://doi.org/10.1177/0271121416637597

Lo, J. Y. T., & Shum, K. K. M. (2021). Brief Report: A Randomized Controlled Trial of the Effects of RECALL (Reading to Engage Children with Autism in Language and Learning) for Preschoolers with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 51(6), 2146–2154. https://doi.org/10.1007/s10803-020-04692-0

Quinn, E. D., Kaiser, A. P., & Ledford, J. R. (2020). Teaching preschoolers with down syndrome using augmentative and alternative communication modeling during small group dialogic reading. American Journal of Speech-Language Pathology, 29(1), 80–100. https://doi.org/10.1044/2019_AJSLP-19-0017

Towson, J. A., Gallagher, P. A., & Bingham, G. E. (2016). Dialogic Reading: Language and Preliteracy Outcomes for Young Children With Disabilities. Journal of Early Intervention, 38(4), 230–246. https://doi.org/10.1177/1053815116668643

Whalon, K., Delano, M., & Hanline, M. F. (2013). A Rationale and Strategy for Adapting Dialogic Reading for Children With Autism Spectrum Disorder: RECALL. Preventing School Failure: Alternative Education for Children and Youth, 57(2), 93–101. https://doi.org/10.1080/1045988x.2012.672347

Whalon, K., Hanline, M. F., & Davis, J. (2016). Parent Implementation of RECALL : A Systematic Case Study. Division on Autism and Developmental Disabilities, 51(2), 211–220.

Whalon, K., Martinez, J. R., Shannon, D., Butcher, C., & Hanline, M. F. (2015). The Impact of Reading to Engage Children With Autism in Language and Learning (RECALL). Topics in Early Childhood Special Education, 35(2), 102–115. https://doi.org/10.1177/0271121414565515

Whitehurst, G. J., Falco, F. L., Lonigan, C. J., Fischel, J. E., & et al. (1988). Accelerating language development through picture book reading. Developmental Psychology, 24(4), 552–559. https://doi.org/10.1037//0012-1649.24.4.552

Whitehurst, Grover J., Arnold, D. S., Epstein, J. N., Angell, A. L., Smith, M., & Fischel, J. E. (1994). A Picture Book Reading Intervention in Day Care and Home for Children From Low-Income Families. Developmental Psychology, 30(5), 679–689. https://doi.org/10.1037/0012-1649.30.5.679

Wilcox, M. J., Gray, S., & Reiser, M. (2020). Preschoolers with developmental speech and/or language impairment: Efficacy of the Teaching Early Literacy and Language (TELL) curriculum. Early Childhood Research Quarterly, 51, 124–143. https://doi.org/10.1016/j.ecresq.2019.10.005

The exclusionary criteria and the bridge between Intellectual Disabilities and Serious Mental Illness by Magdelene Thebaud, Social Work Trainee

As an MSW student intern, I have been given the opportunity to do my clinical practice in an inpatient psych department. Here we see medically cleared patients that were referred from the ER who have ‘Serious Mental Illness.’ According to the American Psychiatric Association “Serious Mental Illness (SMI) is defined as someone over the age of 18 who has (or had within the past year) a diagnosable mental, behavioral, or emotional disorder that causes serious functional impairment that substantially interferes with or limits one or more major life activities.”

Hospitals and agencies all have their requirements and “exclusionary criteria” as to whom they can admit into their departments. Sometimes these exclusionary criteria can seem to be non-inclusive of patients who need that help most. Often times, individuals with intellectual disabilities are excluded from receiving the care that they need because of their mental health problems are not due to a brain chemical imbalance but by a behavioral problem. I experienced seeing individuals get turned away from mental health assistance because the medical professionals could not treat their behaviors with medication. This type of perspective limits the care and needs for those who do have intellectual disabilities and a serious mental illness. In Illinois, there are even laws made that make sure that these exclusionary criteria are not imposed.

“(405 ILCS 5/2-100) (from Ch. 91 1/2, par. 2-100)
    Sec. 2-100. (a) No recipient of services shall be deprived of any rights, benefits, or privileges guaranteed by law, the Constitution of the State of Illinois, or the Constitution of the United States solely on account of the receipt of such services.
    (b) A person with a known or suspected mental illness or developmental disability shall not be denied mental health or developmental services because of age, sex, race, religious belief, ethnic origin, marital status, physical or mental disability or criminal record unrelated to present dangerousness.
(Source: P.A. 86-1416.)”

However, it still is not applied in all the different agencies. How do we “check” these agencies that they don’t decline individuals because of their intellectual disabilities if they present with a mental health problem.

Part of the research that I get to partake in the LEND fellowship is bridging the gap between intellectual disabilities and mental health. Cognitive behavioral therapy has a history of not addressing the needs of individuals who have autism. Honestly, there is just a serious lack of research on these populations and mental health in general. Working with Dr. Kristin Berg on the BEST project, our research team gets to provide workshops to families with children with disabilities and a mental illness.

Resources

What is Serious Mental Illness? | SMI Adviser

https://www.ilga.gov/legislation/ilcs/ilcs4.asp?DocName=040500050HCh%2E+II&ActID=1496&ChapterID=0&SeqStart=5000000&SeqEnd=8000000

Benefits and Considerations of Increased Telehealth as a Result of COVID-19 by Morgan Stutts, Psychology Trainee

When I first realized the majority of my clinical placement was going to be done virtually, I was disappointed. After my last year had been spent entirely on Zoom, I was so tired of the idea of spending even more time meeting virtually. I had also been excited to develop in-person connections, and the idea of telehealth was daunting. However, both through my program and of telehealth programs more broadly, I had heard that the use of telehealth this past year had allowed for meeting with individuals that may not have otherwise been seen, for a variety of different barriers of accessibility. So, with both my fear and optimism, I began my first attempt at telehealth.

Since beginning my clinical practicum in autism assessment, not only have my nerves about providing virtual healthcare settled for the most part, but my appreciation for telehealth has also increased immensely. The switch to Zoom appointments has provided the opportunity to connect with patients who would typically not consider visiting us hours away, to attend appointments, in addition to lessening the burden that attending multiple appointments may add for individuals and families. And while I often encounter situations where I feel something may be much easier to do in person, I am so grateful that this option can be provided to those who benefit from it.

In reflecting on my own personal experiences this semester, I’ve thought more about virtual healthcare more broadly and what the future of telehealth may be. The rise in telemedicine has resulted in increased access to services that individuals may not be able to otherwise receive.

However, while there is already a myriad of barriers to accessing healthcare — difficulties with obtaining transportation, having childcare, and limited providers nearby1,2 — telehealth brings additional barriers. To engage in such virtual appointments, individuals typically need access to devices and Wi-Fi. Virtual appointments have created opportunities for individuals to attend meetings that may not otherwise be feasible, however providers will have to keep in mind these novel barriers when engaging in telehealth services. I am hopeful and excited to see how the use of virtual appointments will lead to increased accessibility in the future.

1 Ahmed, S. M., Lemkau, J. P., Nealeigh, N., & Mann, B. (2001). Barriers to healthcare access in a non‐elderly urban poor American population. Health & Social Care in the Community, 9(6), 445-453.

2 Brems, C., Johnson, M. E., Warner, T. D., & Roberts, L. W. (2006). Barriers to healthcare as reported by rural and urban interprofessional providers. Journal of Interprofessional Care, 20(2), 105-118.

Regina, Always Liked You Best by Kayleigh Geisse, Physical Therapy Trainee

After an exhausting day, I walk into my parents’ house and I am instantly greeted by three rambunctious dogs, hungry for both food and attention. I let the dogs out and I watch them chase an unsuspecting squirrel in vain. Suddenly, I hear a low whine from the back of the house. Confused, I go to investigate. As I get closer to the bedrooms, the faint whine becomes the distinct sob of someone in pain. I pick up my pace; somehow, I know the source of the noise. I throw open the door, sprinting in, and I see Regina prone on the ground, a thin stream of blood flowing down the side of her face where her now broken glasses had once been, her walker just out of reach. I try my best not to cry as I help her up and back into bed.

My older sister, Regina, was diagnosed with Huntington’s Disease (HD) as I was finishing high school. As a progressive neurodegenerative disease, her symptoms were initially mild and while she moved back into my parents’ house, I left for another city to study Psychology. I had casually researched the disease, so I knew the facts: her life expectancy after diagnosis was short and her cognitive, physical, and functional abilities would eventually decline to a point where she would be confined to a bed, unable to speak. By the time I graduated college, her symptoms had worsened; she was struggling to walk on her own, and she was using a rollator walker for all her daily activities. At the time, my mother was her only caregiver, so I made the decision to move home to help as my sister continued to lose her independence. I spent the first few month’s volunteering at the Indianapolis Humane Society while learning more about HD and what my sister’s future held. I saw the frustration and the agony in her eyes when she had to ask me, her younger sister, to help her use the bathroom and perform simple daily tasks. I did my best to help her, but as the months progressed, I began to feel increasingly underqualified and ill-equipped to assist. I became frustrated myself because I did not have the tools necessary to help my own sister.

While HD has no cure, there are benefits of a therapeutic regimen to manage physical symptoms and improve quality of life. We began to reach out to home health aides, mobile physical therapists, occupational therapists, and speech pathologists to help with those daily tasks. In the months that followed, a team of healthcare professionals were at our house daily, and I saw each one of them work tirelessly to help Regina as her cognitive abilities continued to decline. Over time, Regina began to repeatedly ask about a specific provider, Sergio. Each morning, she would start the day by asking if “Sergio the PT” was coming today. On the days he did come, she would brag endlessly about how far she had walked with him or for how long she could stand up. On those days, her mood elevated tremendously, her pain lessened, and she was able to sleep through the night. Undoubtedly, Sergio has been able to prolong her independence and improve the quality of her everyday life.

This led to several conversations with Sergio about his profession - how improving the daily lives of others has helped him live a more fulfilled life himself. I began to explore physical therapy along with other health care professions, continually thinking about Sergio’s impact on Regina. Every visit, Regina continues to praise Sergio. Even with her continued declining abilities, his effect on her life is ever-present. Despite time spent with physician assistants, veterinarians, and other providers, I consistently returned to the impact that a physical therapist has on the lives of their patients, and the relationships formed during the therapeutic process. I knew where I belonged in the realm of heath care.

I have always had a strong desire to help people which led me to study psychology in undergraduate, providing me with a unique understanding of others’ thought patterns and behaviors. Returning to take outstanding undergraduate DPT prerequisites in a new city presented novel challenges demanding that I strike a balance between work, familial obligations, and studies. While studying psychology, I discovered that I am a verbal and visual learner, thus finding a solid support network from my new professors and fellow returning students including forming informal study groups was pivotal to my success. My specific fascination in human anatomy and physiology evident, I was granted the opportunity to teach a human physiology laboratory class the following semester. More than I thought I would, I loved teaching and being able to share my knowledge with others. Promoting a student’s growth in their medical education by facilitating the lightbulb moment of fully comprehending the complexities of difficult concepts, like cardiology, has been one of the most rewarding experiences.

Every sit to stand, every transfer to the toilet, every spoonful of food I assist with, Regina utters a soft, yet sweet “thank you.” Whilst seemingly miniscule of tasks, these gratitude’s have become increasingly meaningful. Caring for a family member with a disability teaches patience, humility, and altruism. It truly makes you appreciate one’s independence and prolonging it. These qualities are necessary for success for any healthcare profession but specifically important to connect with patients in the physical therapy field. To me, becoming a physical therapist provides an opportunity for continual personal growth and medical education to help diagnose, promote movement, reduce pain, restore function, prevent further disability, educate, and help those in need. Through each PT shadowing opportunity, I discover new branches of physical therapy that I am eager to pursue. I am excitedly navigating through DPT school to determine which path will allow me to most benefit others by prioritizing a caring patient relationship and providing the best therapy to patients like Regina for whom it means so much.

Above are two pictures of two sisters, one standing with long curly brown hair and one seated with short straight brown hair, feeding a giraffe a carrot.

Respect for Individual Identity through the use of Language in Clinical Practice by Julia Clearman, Psychology Trainee

Not long ago, I sat in the back of a classroom listening to a student lecture on Autism Spectrum Disorder (ASD). My view from the back of the classroom gave me a sort of observational vantage point in which I could take in individual reactions and notice how other students responded to the information being shared. The student speaker had obviously done a considerable amount of preparation for the lecture and shared statistics about etiology, diagnosis, treatment, and such. However, I still felt myself begin to bristle internally. This well-intending student was following a deficiency-based language to discuss Autistic individuals. Language usage in this way had a distancing effect between those carrying a diagnostic label and everyone else. As I shifted uncomfortably in my seat, I wondered why the language that was being used was so off-putting to me and how I had come to understand the strengths-based approach when considering disability. 

Early on in the IL-LEND experience, we reviewed the use of language using a person-first or identity-first model when engaging in conversations with and about disabled people. There were several different ways of considering these other models. Individuals seemed to prefer one way or another depending on how it was used, for what purpose it was used, and what type of tone the language was presented in. The takeaway, however, was that different individuals had different preferences for using either a person-first or identity-first model when discussing disability. 

After these early experiences in IL-LEND with the person-first or identity-first model, I called up a close friend with a disability. 

“Sarah (pseudonym),” I exclaimed, “you have to tell me what you think about these models!” 

After some discussion, my friend dropped some golden wisdom that has stuck with me ever since.

“Well,” she said, “I guess I prefer person-first language when other people are discussing my disability with me. It is obvious that I have a disability when you look at me, but I am not just my disability. There is so much a part of me that is not my disability.”

We discussed more details about her lived experience with a disability and the reactions and words she has had to endure over the years. When I hung up the phone, I walked away with two deep impressions. First, the use of language matters. Language is linked to identity and has the power to be positive and/or discriminatory. Second, the use of person-first or identity-first language seems to differ across disabilities and individualized preferences.

So, as I sat in the back of that classroom thinking about my IL-LEND experience, person-first or identity-first language, and the honest conversation I had with my friend about the lived experience of disability, I realized that I was upset with the lecture because the language being used lacked respect for those carrying an identity of ASD. Also, I recognized the power of language choice again. 

These experiences and feelings got me thinking. Here I am, in a doctoral program in a health-related discipline, and the language choices I select influence those around me – not only my patients but also my fellow clinicians-in-training, colleagues, and community. 

What would it look like to build into my clinical practice, community engagement, and/or individual conversational exchanges a purposeful language of respect and consideration of person-first or identity-first choices? 

How could I shape my own use of language to understand individual preferences as I grow into a practicing clinician?

While I am still working out exactly how these questions can be answered in my daily exchanges, the point is that I am continuing to work out answers to these questions and carefully watch my own use of language to be more respectful to those with disabilities. 

What would healthcare look like if we all committed to this change?

- JC

More resources:

https://psycnet.apa.org/record/2015-03427-001

https://link.springer.com/article/10.1007/s10803-020-04858-w

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371927/

Why isn’t LEND a part of all Pre-Health Professional Schooling? By Claudia Piatek, Physical Therapy Trainee

I was ecstatic when I received the news that I was chosen to be one of the LEND trainees from my discipline, Physical Therapy. I am interested in going into the Pediatric PT field thus LEND seemed like an amazing program that would gear me with additional information and resources about working with children/ individuals with various disabilities that I would undoubtedly work with upon completion of my schooling. However, when I say “additional information and resources,” at this point I mean “only” information and resources.

Having been in LEND for almost a whole semester and almost completing my pediatric PT course, I am stunned by how little overlap there has been with information shared in LEND and in that course. LEND has taught me an immense amount that I would never have known had I just taken this pediatric PT course. We have had just one guest lecture about school-based PT in which IEPs were discussed in very little detail, while in LEND we have received a wealth of IEP information as well as done case studies on different IEPs. We have had no lecture about language and what type of language to use with parents of and patients who may be neurodiverse or physically disabled.  In fact, I don’t think that I have seen or heard the terms neurodiverse or neurotypical used in any of our lectures. Instead, they are populated with language such as “normal” vs “abnormal.” While this may be necessary in the PT field to make comparisons and come up with interventions, it is not overtly stated for other members of my cohort that this type of language should not be used with parents and children. Thankfully, we had a speaker talk about the “strengths based approach/language”  in LEND and this has emphasized the importance of positive language for me I will make this a priority in my practice moving forward.

By writing this I am not trying to talk down on my program. It is a great program and I have been learning so much. In my program and other PT programs across the country, there is definitely room for improvement especially considering there are other students who are interested in pediatric PT, but are not a part of LEND. They may not learn some of the information that I’ve learned until they are on the job, or they may never learn it, which would put them and their patients at a disadvantage. Regardless, I am extremely grateful for being in LEND, and wish that this wealth of extremely important information and resources was more accessible for other students in pre-health programs, whether they know they have an interest in it or not.

Culture Brokers: Bridging the Gap between Culturally, Linguistically, Economically, Diverse (CLED) families with children with dis/abilities and Special Education services

https://www.shutterstock.com/image-photo/top-aerial-view-famous-golden-bridge-1926545249

(Picture: containing sky, outdoor, mountains, and bridge being held up by hands)

It has been a little over 50 years since the ruling of Brown v. Board of Education (1954) allowed individuals of color to intermingle and learn alongside their white peers in public education institutions in the United States. Similarly, special education has only been officially around for a little under 50 years since the passing of the All Handicapped Children Act of 1975 (EAHCA; renamed IDEA in 1990) which provided opportunities for individuals with dis/abilities to attend public schooling and receive a free appropriate public education (FAPE). Within those 50 years, the U.S. educational system has played both the intricate role of protagonist and antagonist in providing special education services to children with dis/abilities and their families who are also individuals of color (Harry, 2008).

Currently, students from Culturally, Linguistically, Economically, Diverse (CLED) communities make up around 50% of students receiving Special Education services in the public education system (OSEP, 2018) Schools and districts are tasked with providing the essential resources and support for the growing population of students from CLED communities in Special Education. Yet, this population of individuals and their families have been overwhelmingly understudied and under resourced.

The solution for bridging the disconnection between these two systems, Culture Brokers! Individuals working toward supporting CLED families as they navigate the education system and their intersectionality of being people of color, from varying cultures, who speak different languages, with disabilities (Mortier et. al, 2020). Cultural brokering is an intervention that supports “any advocate who engages in the purposeful act of connecting people of differing cultural backgrounds to improve collaboration” (Rosetti, et. al, 2018).

Through Culture Brokers, communities can begin developing a foundation for relationship building of partnerships with all stakeholders (families, school professionals, policy makers, etc.) with students as the focal point! Cultural Brokers can facilitate resources, conversations, and advocacy for families who require the support. Cultural brokers can translate paperwork, interpret at meetings, find local resources and agencies, be a support system, help navigate the IEP process, explain safeguards and rights, and communicate with school professionals. Anyone can become a cultural broker with appropriate training in Special Education services (e.g., Volunteer Advocacy Project) as well as Cultural sensitivity and responsiveness (e.g., Trauma-informed, Courageous Conversations, BeWelltools). Other skills that can benefit cultural brokering: 1) fluency (written and verbal) in the native languages spoken, 2) familiarity with the community and its’ members, 3) self-reflection of one’s own biases and strengths.

by Special Ed Trainee, Edwin Monárrez

Resources:

https://sites.ed.gov/idea/osep-fast-facts-race-and-ethnicity-of-children-with-disabilities-served-under-idea-part-b/

Brown v. Board of Education, 347 U.S. 483 (1954)

Mortier, K., Brown, I. C., & Aramburo, C. M. (2021). Cultural brokers in special education.

Research and Practice for Persons with Severe Disabilities, 46(1), 3–17. https://doi.org/10.1177/1540796920975386

Rossetti, Z., Redash, A., Sauer, J. S., Bui, O., Wen, Y., & Regensburger, D. (2018).

Access, accountability, and advocacy: Culturally and linguistically diverse families’ participation in IEP meetings. Exceptionality. Advance online publication. 19 June. https://doi.org/10.1080/09362835.2018.1480948

Spectrum (T1DM): How Research Can Help Autistic Children with Type 1 Diabetes by Annanda Batista, Nursing Trainee

In 2017, I started my Ph.D. application process, and my focus was only on self-management support for children and adolescents with type 1 diabetes. Meanwhile, I was watching a TV show called “Parenthood,” and the story of Max Braverman touched me. The autism storyline follows the family’s journey to accept Max’s diagnosis and support him while dealing with their own emotions. The show focuses on life with a developmental disability. It changed the route of my Ph.D. proposal. I began to think about the challenges of autistic children or adolescents to manage type 1 diabetes (TID).

I started to search in the scientific literature about this population. There was no article in any database about autistic children and T1D. How would I justify my research topic if there is no scientific publication on this topic? A reflection came to my mind: a scientist needs to go to the population to know their needs better when no data is available. It is not only articles published in journals that provide validation of a topic; it is also the population or individuals themselves. Thus, I began my search for blogs and support groups on social media and found families with autistic children with type 1 diabetes that were forgotten by the scientific community.

This population needed healthcare professionals that knew both conditions. During our conversations, mothers reported that their children faced unique challenges in managing T1D because of their social communication challenges of autism, such as self-care related to the insulin application and regulation, diet change, knowing and asking for help in hypo and hyperglycemia, and health education. Building a trustful relationship with healthcare providers is also a challenge because these professionals did not provide educational orientations about both conditions together.. I realized that these reports would be my justification. They are important! This population needed attention.

Therefore, my Ph.D. proposal focuses on identifying the self-management needs of autistic youth with T1D and ASD in order to develop new technologies to meet needs of both these conditions. Research is done to help communities to improve their health and ask them what they need. Knowing what the population really needs is essential as well as any report in a published article. Researchers need to be closer to their study population.

Occupational therapy—what is that? By Mackenzie Jaekel, OTR/L

I am an occupational therapist (OT) and I am passionate about what I do. However, I’m aware that a lot of people don’t know exactly WHAT it is I do. I spent a good deal of graduate school explaining to my loved ones “no, I am not a physical therapist, no, I don’t just help kids find jobs, no, I won’t look at your arthritis in your hands, and no I am not just the handwriting lady”. But it isn’t their fault that they have trouble keeping it straight. OT is an incredibly broad field that works with a multitude of populations and settings. In addition, the definition of occupation according to Oxford language dictionary, is “a job or profession”. It’s not as descriptive a name as say a firefighter or, yes, a physical therapist.

So what is OT? The key to this question lies in the more niche definition of occupation, defined by the field of OT as “Everyday personalized activities that people do to occupy time and bring meaning and purpose to life” (AOTA, 2020). While occupations, according to OT, do include work or job tasks, they also include brushing your teeth, reading a book, and driving a car. Occupational therapists then help people do these meaningful activities, or occupations, when challenges or barriers prevent their completion, for example, in the presence of disability.

For example, I work in the school system with kids who have trouble with one or more “occupations” during their school day including but not limited to handwritten homework, ordering lunch, and playing on the playground. This usually requires me to do a task analysis to decide what the barriers are to the activity and whether we can modify or change the environment, the task itself, or a person factor to overcome that barrier.

So yes, an OT may work with a transition age student to find a job placement in the community. Yes, an OT might co-treat with a physical therapist or treat arthritis if motor difficulties are impacting everyday activities. And yes, an OT may work on handwriting because it impacts a child’s participation in the classroom. If you want more information, make sure and ask your friendly neighborhood OT or check out the resources below! We know it can be confusing, trust me, you will not be the first one to ask. 

Pictured above are five frosted cookies in a circle decorated with a brain, a rainbow infinity sign, a wheelchair symbol with a heart instead of a wheel, plants, and adaptive equipment. In the middle is a 6th cookie that says OT. Cookies made and photo taken by me, Mackenzie Jaekel (baking is one of my favorite occupations).

Additional Resources

American Occupational Therapy Association Description

Description tailored to parents  

Description tailored to kids

Cooking and Mental Health do Mix by Ghada Abdalla, Social Work Trainee

As a young, energetic mother, I felt unstoppable, that I could do anything and deal with any challenge that I faced, but no one prepared me for the effect of harsh words about my child and my choices in raising him. Or the lack of resources.

While I used to work with families challenged with Autism, being on the receiving end of the diagnosis gave me a completely different perspective and a tremendous insight. I remember the day that the therapist said, “he is too fast for any information to sink in; there is nothing that I can do with him.” I was puzzled and wondering what I would do now. I tried a behavior approach to get to my child, but he was not that interested at that young age. I searched for other things like changing his diet and did not notice any change.

 Then I remembered that one of my best conversations with my mom was when we were cooking, so that is what I did.

Cooking was one of the most valuable things that worked with my son that slowed down his ADHD and cooled down his Autism. Cooking was the only time we could have some verbal communication, the only time he was listening. Incorporating the behavior aspect and speech was great and had a great outcome. He still has things that he can’t touch and food that he can’t smell. But even with these challenges, it is still so rewarding. From my experience, I had to keep track of what smell to avoid and how the light should be, what he can tolerate, and whatnot. While I was searching, I found two excellent websites that explain what to do with each of the challenges.

https://thewebaddicted.com/lifestyle/improve-life-and-social-skills-in-the-kitchen/

https://orkidideas.com/cooking-skills-children-with-autism-sensory-issues/

 I started to bake with him to make our cookies and pasta, our pastry, and treats. Even asking friends to come and we can describe what we are doing, how it feels and what we can smell. I even found out now that some support groups do the same thing.

 In this video, they are talking about this experience. What did I cook? 

Autism and Cooking: A Sensory Experience

I researched more about it and found some research on this subject and the positive effect of cooking on children, especially children with Autism. There are many benefits of cooking with children with Autism, such as facilitating social-emotional development, practicing fine motor and executive functioning skills, and improve a variety of food choices. I also found two websites that talk about the benefits of cooking for people with Autism. It helps strengthen their social and emotional development by allowing them to socialize and build a connection with others over food. Cooking also enhances their fine motor skills while they are slicing, stirring, and kneading the dough. Also, it exposes them to a different variety of food choices, and it improves their ability to follow directions, whether it is verbal or writing. And last cooking teaches the importance of cleanliness.

In this journey, I found joy in spending time cooking with my children, and I hope that you do too. 

Resources about cooking: 

https://www.cookingautism.org/about

https://www.sdautismhelp.com/blog-autism-special-needs/4-benefits-of-cooking-with-your-child-with-autism[AK4] 

GHADA ABDALLA

A Call to Action: Disability Justice in a Social Work World by Social Work Trainee, Nahime Aguirre Mtanous

This week, I began my last year in my Master’s in Social Work (MSW) program at the University of Chicago’s Crown Family School of Social Work. In my time there, I have been able to lend disability justice, culture, and advocacy efforts to social work scholarship easily. And yet, the field of social work has yet to adopt disability justice pedagogy to its curriculum. With the rise of racial unrest of the 2010s to now, we have seen the social work profession work to align itself as radical by adopting anti-racist and decolonization strategies in its curriculum. Among these ideas, radical social work also teaches the importance of understanding how hypersegregation and resource inequality play a part in the development of people. Furthermore, the ideas of a livable wage and housing security are taught to future social workers to illustrate the goals that contemporary activists work to achieve the goals of a social work education.

All of these different pieces of social justice work taught to MSW students aim to help students understand the populations that regularly seek supports without specific instruction on how they interact with the disability community. People with disabilities are at higher risks of needing social justice work in receiving services. How can MSW students hope to do actual social justice work if their education does not teach them the intersection of all the previous components by centering disability justice education?

The disability community is rich in examples of how people performing radical social work can truly provide supports for disabled folk. Social workers are already taught how to function in interdisciplinary teams; shouldn’t they also know about how to provide care coordination in anti-ableist ways? As disability activism shifts from a disability rights framework into seeking anti-capitalist disability justice, shouldn’t social workers know how to work within those frameworks? Shouldn’t social workers know how to apply anti-oppressive practices that disabled people have and continue to experience through an educational approach instead of a #FreeBritney Twitter thread detailing the lack of bodily autonomy adults with disabilities experience?

Special topics within the disability community like right to marry, benefits determinations, subminimum wage work, etc., should be a required curriculum component that future social workers should not miss in their education. All social workers should be able to help support the self-determination of people with disabilities in order to provide anti-ableist disability justice.

Premature Infants and Parent Reactions by Johana Machuca, SLP Trainee

Last week on one of my rounds, a student described the case of Patient A, who was born at 32 weeks gestation. We went over when speech therapy took place, what happened during treatment, and some of the improvements being made by the baby. I remember feeling upset about all the things the baby was missing by being in an incubator such as not being exposed to language and being overstimulated by all of the noise coming from the incubators. Still, the one thing that affected me the most was when a student asked the presenter how present the parents were in this interaction, whether by phone or in person. The presenter’s response: they were not present at all.

I felt frustrated and upset that the parents would not go see or call to check up on their baby. I know I am not a parent, but I have a sister who was born prematurely at 33 weeks when I was 15. My parents would leave every morning to go to the hospital every day for two months straight to see her for a couple of hours. I talked to my mom about the rounds presentation, and she mentioned how a week after giving birth, the doctors were going to perform a different procedure on my sister. My dad was at work and could not take my mother, so she got on a bus and walked the rest of the way to the hospital. The doctor commented on how a family member of my sister had shown up within a few hours. He then pointed to all the other babies in the room and mentioned how none of the parents had visited or even called to see how their babies were. Not even called to check-in to see how their baby was doing. 

I know that these are just two occasions in which parents have not been present, and it should not be generalized to everyone, yet I still think about all of the babies who do not have their parents' support. There is not much research about the interaction of parental visits in the NICU, but I was able to find common parent reactions to the NICU. Reactions summarized in the article healthychildren.org (cited at the bottom) include…

- Fear of the unknown

o   Parents might feel uncomfortable with the NICU environment, or they might fear what their families think about the birth. 

- Anger 

o   Parents might feel angry at the hospital staff or at not having the birth experience that they expected. 

- Guilt

o   Parents might ask what they did to cause this? Or how they could have prevented this.     

- Loss

o   Not having a full-term infant may lead to feelings of loss of what was expected. They might also feel the loss regarding the parenting role. 

- Powerlessness

o   They feel like they cannot do anything for their baby as their baby is surrounded by the high-tech technology.

- And Feeling on Display

o   Parents might feel like a fish in a tank since in the NICU, one is usually sharing space in a large room.

This has allowed me to empathize more with parents and comprehend more of what they are going through. The thought of parents not visiting their little ones still upsets me, but I try to think about how the parents are feeling and the toll having a baby in the NICU is taking on them.

For more information regarding common parent reactions:

https://www.healthychildren.org/English/ages-stages/baby/preemie/Pages/Common-Parent-Reactions-to-the-NICU.aspx

For research regarding parental visits in the NICU:

https://jamanetwork.com/journals/jamapediatrics/fullarticle/485877

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3700586/