The “Dangers” of the Collegiate Experience & Productivity Culture by Social Work Trainee, Mary Griffith

Since arriving at the University of Illinois I have experienced the toll that stress can take on students’ mental health.  From the beginning, students are pulled in many directions from excelling academically to building social connections.  The stress associated with looming deadlines and uncertainty about the future have large implications.  According to the New York Times, over 60% of students reported “overwhelming” anxiety in the last year and 40% reported depression that interferes with functioning. Another article published in Nature reported that graduate students around the world have rates of anxiety and depression six times higher than the general population.  Moreover, according to the Chronicle of Higher Education, universities are struggling to keep up with the increased need for mental health services. 

As a graduate student with anxiety and depressive symptoms, I am encouraging professors to recognize that students are more than their grades and that academic performance doesn’t necessarily indicate future success.  It is critical that professors recognize that mental health matters and should take priority over academic deadlines.  Professors can normalize some of the stress associated with graduate work by periodically reminding students it is okay to feel anxious or depressed about high workloads or a poor test score.  Finally, and perhaps most important, professors should know how to help students properly access mental health resources on campus and in the community.  By following these suggestions, professors can make graduate education a positive learning experience despite the inherent stress. 

Furthermore, as someone with a disability, anxiety, and depression, I recognize that productivity culture in both education and the workplace is incredibly toxic.  What is toxic productivity you ask?  According to HuffPost, “toxic productivity is essentially an unhealthy desire to be productive at all times, at all costs. It’s the need to go the “extra mile” at work or at home, even when it’s not expected of you”. My dad has been repeating the following phrases for years:

1.     “Perfect is the enemy of good”

2.     “Create, then recreate”

I believe they are prefect examples of the dangers of toxic productivity and how to combat its negative effects.  The idea of completing copious of work without regard to mental health and disability factors is ableist and exacerbates a wide variety of disabling conditions. In social work, we talk self-care to absolute death.  However, I’m realizing now more than ever that the deliberate act of self-care (whatever that means for you) is truly critical to any type of success.

The Chronicle of Higher Education: https://www.chronicle.com/

Learn more about toxic productivity: https://www.huffpost.com/entry/toxic-productivity-work_l_606655e7c5b6aa24bc60a566

Please Hear Our Voice by Kelly Calloway, Family Advocate Trainee

The above image is of 3 children standing in the wake of waves, 2 of them holding their shorts up, as 1 looks straight out at the ocean, one looks down at the waves, and the other looks to the right.

I come at this from the perspective of a parent, but also as a professional in the field of disability, I can see how easy it can be to make assumptions on a parent’s decision or comment about their child. As a parent and as a professional, I call on you to respect a parent’s expertise as it relates to their own child. I think it is important to always step back and try to understand why a parent may be feeling the way they are. Consider coming in with a positive attitude and one that emphasizes the importance of a parent's concerns and questions. A parent is there for every moment, the good moments, but also the hard, the long nights, the broken hearts, the pain, the tears, the missed opportunities. They are there when their child does not understand why something they love is being taken away because there wasn’t an accommodation that could be made that didn’t violate their human rights. Let’s not be so quick to advocate for their human rights if the right itself may take away something a person loves.

It is not easy to understand how a disability can affect the daily life of any one person or their family. We are all very diverse. We can understand what accommodations can be given to support a person or family, but we all experience life at our own 100% and it looks different for everyone. As I mentioned I’m a professional in the field, a family support specialist for the Air Force, but I "live" the perspective of that as a mother of children with disabilities. I’m speaking on behalf of all parents of children with neuro-developmental disabilities. The perspective that keeps me up at night. The perspective that makes me question whether I’m getting it right. I want the world for my children and I know their disabilities make life hard right now. I want to provide experiences that teach them to advocate for the things they need and to see that there are no limits to what they can achieve. The ocean has always been a place for me to be reminded about endless possibilities in a world that is excitingly chaotic yet stabile and peaceful. Recently I had a chance to take my kids to see the ocean for the first time since they were little. I love that they found the same fascination for all the ocean can symbolize about life.

“The ocean is the beginning of life on Earth, and symbolizes formlessness, the unfathomable, and chaos. The ocean can also be seen as a symbol of stability, as it can exist largely unchanged for centuries. The ocean is considered to be boundless, a place where one can easily be lost, and can

therefore be seen to represent the boundless span of life, and the way one can get lost on the journey through life.”

There isn't a day that I don't think of my daughter's future. She was diagnosed with Fetal Alcohol Spectrum Disorder (FASD). The challenges she faces everyday are directly related to the decisions someone made. It wasn't a tragic car accident or some other unforeseen tragedy. It was a decision to consume drugs and alcohol during pregnancy. She's a beautiful girl, inside and out. She has so much to offer. In our case, her biological mother was also faced with situations that were a result of parents that were making poor decisions. She too was in foster care.

Trust me, as a parent of children with disabilities regardless of their age, when they find natural opportunities to be a part of something that interests them, the last thing we want to do is be in the way. If it's unsafe, then it's my responsibility to intervene and help find ways to make it safe. How we choose to intervene as parents is very important. If we make an irrevocable decision too soon, we could have regrets. What parent doesn't make decisions that might have been driven by emotion, fear, or exhaustion? A parent recently reminded me of a saying, “You’re only as happy as your saddest child.”

As parents, we know our child's potential long before a medical provider makes a diagnosis. Most parents long to fully understand it. This is where we need expertise. We long to understand their diagnosis so that we can help our children make their own decisions. Parents need someone to take the time to help them fully comprehend how we keep our children safe and ensure the safety of those around them while giving them the full entitlement to their human rights. We want to understand even if we are not asking for it.

As parents of children with neuro-developmental disabilities, we want what all parents want. We want our children to live their best life. We know our children well and need the "professionals" on our team to respect our expertise. Sometimes, we all need to be reminded or informed of research and resources to help make informed decisions that support our children while affording them of the rights they are very much entitled. We need to be careful. We need to avoid jumping to conclusions that parents are ableists. Let's not be so quick to make that accusation because that too is ableism. Ableism can also be, medical experts or professionals jumping to conclusions about a parent’s intentions based on limited information. Sometimes parents don’t come forward because of a fear of asking for help, asking for help and never getting it, or they may feel like they don’t need help.

This makes me think of a family that spends a lot of time at water parks. She carries her 12-year-old daughter up 5 flights of stairs so that she can join the entire family. She looks at me with tears in her eyes and says, “I hate that this might be her last time ever going down a slide. I can’t carry her safely to the top if she gets much bigger.” You see, a parent’s desire for a child to stay small isn’t always about what makes things easier for them. It’s what opportunities will be taken from their child when they can no longer be safely carried up 5 flights of stairs to go down a water slide with their family.”

When I sit with my fellow parents, we all have different stories, but do you know one common experience most of us have? Most of us will tell you we had to fight to be heard and understood. We advocate because we love. We love deeper than most professionals will ever understand. Our requests come from desperation to protect our children from harm and embrace the opportunities for them to live their best life. Their long term happiness is at the forefront of what we hope for their future.

I use those experiences to advocate for the importance of hearing and acting on the voices of parents and individuals with disabilities. We need to teach self and family advocacy as early as possible so that they know how to ask for the right support, treatment, or accommodations.

Let's embrace diversity by getting to know one another and educating one another to avoid ableism and respect the rights of all individuals, especially as it relates to parental identity. Whether professionals want to admit it or not, parents are the experts on their child and we all should respect them for that. Listen, respect, and educate parents, when needed, in their role of expert on their child.

Last, thank you to those of you that do listen, encourage, and respect parents. Thank you for taking the time to educate about research, resources, and support. I don’t mean to imply you don't. We see you; we thank you and appreciate far more than you know. Unfortunately, when we must speak up, we can't always point those out and still feel as if we are heard.

Reference http://websites.umich.edu/~umfandsf/symbolismproject/symbolism.html/O/ocean.html

Better Late than Never, How to be an ALLY by Special Ed Trainee, Evelyn Boateng

As LEND comes to a close this 2021 - 2022 year, I reflect on everything I have learned about the disability movement and the fight for equitable access to society. I have learned so much that will positively impact my practice in the future. As I think about the next steps after LEND, I would like to emphasize the importance of taking the knowledge gained as a LEND trainee to become an ALLY for the disability community. The CDC states that an ALLY  “acknowledges and respects individual experiences and abilities, learns about different disability types, leverages their influence to promote accessibility and inclusion, and yields the floor to people with disabilities to help identify and eliminate barriers.”

pictured is a circle outlined in bold orange with black text inside stating “I’m a DISABILITY A.L.L.Y”

There are a few things you can do to demonstrate allyship including educating yourself. We learned about many different disabilities but there are so much more we do not know about. Take the time to educate yourself about the various disabilities, disability models, disability movement, and ableism. When creating content make sure they are accessible from the beginning. You should consider accessibility in all that you do. Amplify the voices of disabled people over your own. Always assume that a disabled person is more than competent to speak and act for themselves. Lastly, speak up and speak out when you notice ableism occurring in your work, school, home, and social environment.

As you leave the LEND trainee program and move on to your next stage in life, I implore you to think about this definition of ALLY and make a conscious, concerted and constituent effort to be an ALLY for the disability community in all that you do.

Resources

●      Become a Disability ALLY in Your Community and Improve Inclusion for All | CDC

●      Be An Ally | Accessibility Information

●      Disability Allyship Resources

Disability Policy Seminar by Nutrition Trainee Annemarie Mysonhimer

I am very grateful to have had the opportunity to attend the Disability Policy Seminar (DPS) at the end of March 2022. Due to restraints in traveling due to my dissertation project, I was so glad that this conference was a hybrid event – there was both a virtual platform and an in-person event in D.C. Additionally, I know that having the option of attending virtually made the event accessible to many people with different disabilities who may not have been able to attend otherwise. I hope this option is maintained for the future. Not only did the seminar provide educational content, but it also had a great networking tool for virtual attendees like myself. It helped me to feel like I was really there, interacting with people who care about the same things that I do.

The United States Capitol. Image from the Disability Policy Seminar virtual attendee portal

First, I learned a good deal about Social Security and Supplemental Security Income (SSI) benefits. Being new to the policy arena, I appreciated the educational content provided by the speakers. SSI serves seniors and those with disabilities, particularly those with low income. Many people depend on SSI benefits throughout their day-to-day lives. However, I learned a few surprising things about this system. For one, it has not been updated in years to reflect inflation, which is very high today. This subjects people who depend on this policy to live in poverty. Moreover, if people receiving SSI benefits make too much income from a job, these benefits will be taken away. Disabled people are being told they should work if they are able, but when they do, they are forced to reduce their hours to stay below the required income threshold – this means living day-to-day at a poverty level and not being able to accrue any savings to improve their livelihoods. This system is very unfair and needs to be updated. While there are many other problems with SSI, I will highlight one more that really struck me. If two people receiving SSI benefits get married, you would logically think that they as a couple would receive twice the benefits, right? Wrong! Instead, the benefits received for each person are actually reduced. This means that people with disabilities are being penalized for getting married. I could not believe it when I heard this. This policy needs to change.

Additionally, I learned that we are sorely in need of more funding for home and community-based services (HCBS) and direct support professionals (DSPs). While problems already existed in these areas before COVID-19, the pandemic highlighted these flaws and brought them to the forefront. HCBS, paid through Medicaid, allows people with disabilities to receive the help and services they need in their own homes or where they live in the community. These services may include personal care and help with activities of daily living. HCBS makes a big difference in the lives of many people with disabilities and their families. Without these services, these people may not be able to remain in their homes. Therefore, we need to ensure that funding is continued and increased for HCBS.

Furthermore, the people who put these services into action are DSPs. While their role is vital in helping people with disabilities live where they desire and have a good quality of life, their salaries do not reflect the importance of what they do. Also, due to the low wages, there is a high turnover rate for DSPs, making it difficult for people who need their services to have continuous resources. Without the dedication of DSPs, HCBS would not be possible. Just as no adjustment from inflation was given for SSI benefits, DSP wages have also not been increased with this high inflation rate. The funding for both HCBS and DSPs needs to be updated.

Networking Tool for Virtual Attendees. Image from the Disability Policy Seminar virtual attendee portal

Lastly, in addition to the education content I received from attending DPS, I also appreciated the networking platform for virtual attendees. Half-hour blocks were scheduled during the event where attendees could have face-to-face 5-minute conversations with other attendees. Of all the people logged into the networking platform, participants were randomly paired up to talk with one another. There was also an option to extend to 10 minutes if the conversation was really flowing and both attendees agreed that they needed more time. Through this platform, I was able to meet many wonderful people. I even connected with two self-advocates after the seminar, and we scheduled hour-long sessions to talk further. I learned so much from them and we have agreed to stay in touch.

During these networking sessions, I had one particularly memorable experience that I would like to share. In one of the video calls, I was matched with a gentleman who could not speak. I spoke to him for the 5 minutes, trying to ask him yes or no questions that he could respond to. He seemed to nod and smile several times throughout our call. After the networking sessions were over, I messaged him through an attendee contact tool on the DPS platform. From his response, it was clear that he had understood everything I had said. I am so glad that I was matched up with him. He was so brave to hop on the networking calls despite what others might think. I would not have had the courage to do that. Every day, people like this man are written off, or only their caretakers are spoken to. I think the world would be a better place if everyone had the chance to meet and get to know a person like him.

Thank you LEND and DPS for making this experience possible for me and organizing such an important event!

Trillions of Tiny Companions by Annemarie Mysonhimer, Nutrition Trainee

Autistic children often experience gastrointestinal discomfort, ranging from constipation to diarrhea. Indeed, it is challenging to study these symptoms using measurements like averages because digestive symptoms can be very individual. For instance, one review of 144 research studies of autistic people found that 4-46% experienced constipation, 2-76% experienced diarrhea, and 4-97% experienced ≥ 1 gastrointestinal symptom (1). Wow, what a range!

A big reason for the individual experience of digestion is our gut microbiota. These are all the bacteria that live inside our intestines, mainly in the large intestine. In fact, you have about as many bacterial cells on and inside your body as you do human cells. Trillions! Even more surprising, you have about 100 times more genes from these bacteria than your own human genes! Because your genes are so important in making you who you are, think what a huge role these bacteria can play in your health and life. Just like you have your own unique fingerprint, you also have your own unique assortment of bacteria that live inside your gut.

After learning a bit about your microbiota, you’re probably beginning to see why each person can have such different gastrointestinal symptoms, even after eating the same foods. Interestingly, autistic people seem to have a different milieu of microbiota in their intestines than those who are not autistic. In a study of many studies and a summary of all their data (called a systematic review and meta-analysis), researchers found that autistic children had higher amounts of some types of bacteria and lower amounts of other bacteria than non-autistic children (2). Notably, one of the reduced bacteria found across these studies was Bifidobacterium. This is one of the most common bacteria found in probiotic supplements at grocery stores or purchased online. It’s easy to understand why there is so much hype around probiotics (bacteria that have health benefits for humans) and prebiotics (fibers that probiotic bacteria eat) to support autistic people, especially their gut health.

While I think there is a lot of potential moving in this direction, we also need to be cautious. There are so many probiotic supplements out there, and because we all have such a unique set of microbial companions, we need to treat them as the truly unique friends that they are. Just because I love to eat garbanzo beans, this doesn’t mean that you love to eat them. And just because my microbiota thrive on certain types of fiber, this does not mean that yours thrive on the same type. There is no one-size-fits-all probiotic that’s going to fix everything. Ultimately, we need to move toward personalized nutrition and care to support autistic individuals and their families.

References:

1. Holingue C, et al. Gastrointestinal symptoms in autism spectrum disorder: A review of the literature on ascertainment and prevalence. Autism Res. 2018;11(1):24-36.

2. Iglesias-Vázquez L, et al. Composition of gut microbiota in children with autism spectrum disorder: A systematic review and meta-analysis. Nutrients. 2020;12(3):792.

The Benefits of Parent Training by Michelle High, Nursing Trainee

The image above is of an adult finger being held in a baby’s hand.

After graduating from college, I had the privilege of serving at Casa de Esperanza in Houston, Texas providing residential care to children in crisis. Despite some serious heartbreak that comes with good-byes and uncertainty, my two-year journey as an intern/foster parent was filled with such incredible joy and love. There is not a day that goes by when I don’t think about my kids and what I learned during that time…and it was a lot. I learned how to install car seats, navigate the pick-up/drop-off line at school, build a repertoire of bedtime songs, coordinate special deliveries from the Tooth Fairy, Santa, and the Easter Bunny, dance to the silliest of songs to get a smile, and kiss ouchies away. I also learned that having access to high quality resources and support, like therapy and evidence-based parenting programs, made a difference in our lives.

When I was feeling overwhelmed, challenged, and tired from handling tantrums, disruptive behavior, and a school system that didn’t have the resources to help meet a child’s needs, we started Parent-Child Interaction Therapy (http://www.pcit.org/what-is-pcit.html). This evidence-based parenting program helped me add the tools I needed at the time to my parenting toolbox. I think our parent-child relationship was strengthened and PCIT helped me learn how to provide structure and consistency in challenging parenting situations.

As a pediatric nurse, I am passionate about improving health outcomes for children and families. My positive and impactful experience on the receiving end of PCIT ultimately led me to my research interests around parenting and parent training. Parent training is one opportunity to provide education about child development and care, positive parent-child interactions, responsiveness, communication, behavior management, and teaching (Centers for Disease Control and Prevention, 2009). As I continue my training in LEND and my PhD program in Nursing Science, I am looking forward to researching and learning more about the education needs identified by parents of children with medical complexity and how practitioners can help build on family strengths with evidence-based parent training programs.

Reference:

Centers for Disease Control and Prevention. Parent Training Programs: Insight for Practitioners. Atlanta (GA): Centers for Disease Control; 2009. Retrieved from: https://www.cdc.gov/violenceprevention/pdf/parent_training_brief-a.pdfs

The Intersections between Race and Disability by Odile Carrol, Disability Studies Trainee

After the murder of George Floyd in May 2020, the United States observed an immediate rise in Black Lives Matter protests, anti-police state rhetoric and collective antiracist efforts. However, while several DPOs (Disabled Person’s Organization), disability advocacy, and other disability-related organizations publicly put forth clear language admonishing actions of police officers that led to the death of Floyd and many other people of color in the United States, there has been a dearth of accessible anti-racist resources developed for the intellectually and developmentally disabled community. This gap in intersectional activism is not new or unique, but highlights the acute need to explore how activism can continuously be made more accessible to all members of the disability community. The article linked below indicates important conversations being had in spaces of higher education around the intersection of BIPOC communities and Deaf and disabled communities, but is limited in its context and audience and indicates the urgent need to proliferate multiple, accessible anti-racist resources for this activism work to truly occur intersectionally.

Disability Justice, Race and Education - article mentioned above

Authoritarianism in Healthcare by Nicole Ann Alberto, Public Health Trainee

I would like to share an interesting article that my Psychosocial professor recommended. It was written by L. Bates titled “Confronting Goffman: how can mental health nurses effectively challenge stigma? A critical review of the literature.” The article discusses the conscious or unconscious perpetuation of stigma towards patients with mental disorders by healthcare professionals within the mental health system.

While the article focuses on describing mental health issues in the United Kingdom (UK), a part of it concerning nurses stood out to me. He stated that nurses who work on the inpatient unit of the psychiatric ward have poor attitudes and are intolerant of patients admitted with mental health disorders. This behavior is worse for patients diagnosed with a personality disorder because of their chaotic interpersonal relationships and sometimes impulsive dangerous behaviors. These stereotyped characteristics together with concerns for safety present as barriers for nurses to relate with these patients. To avoid situations that may trigger the patients’ supposed dangerous behaviors and put the nurses to harm, these patients are discouraged to try new and challenging activities and encouraged to comply and limited to low risk activities to avoid precipitating unwanted reactions or behaviors. While this may present as risk mitigation, it also denies the patients their rights to participate in these activities and restricts opportunities and challenges for growth and recovery.

This writing only focuses on situations involving nurses on a specific healthcare setting but note that there were cases wherein patients with mental health diagnoses who could be discharged and live independently in the community were prevented from doing so due to fear of relapse or the possibility of causing public harm. Instead of giving the patients the ownership of their diagnosis and giving them the ability to manage their own recovery by providing opportunities to exercise their civil rights, the healthcare system including professionals and policy makers would rather hand the responsibility of promoting recovery to mental health services and hope that they are sufficient.

What this problem calls for is a partnership between the service users and the providers of service. The healthcare control should shift from autonomy to promoting involvement and recovery. This means giving the patient the right to decide on their treatment while providing the necessary information, services, and opportunities. Decision making in healthcare involves considering the benefits and harms of a service as well as respecting the patient’s goals, characteristics, values, and preferences. Shared decision making had been proven to increase patient satisfaction that led to better health outcomes, increased compliance with treatment regimens and lower demand for healthcare resources. Empowering the patient while improving the quality of services is a compromise that benefits everyone. To be able to extend that support to patients with mental health disorders, healthcare professionals and policy makers should first see and acknowledge the stigma surrounding these patients.

As I mentioned earlier, this article reviews stigma among mental health nurses in the UK among others. I’m not saying that the nurses and the mental health system in the United States function exactly similar to the UK’s, but the irony of stigma is that it is so prevalent that it does not discriminate between countries and profession. Stigma and stereotypes present in many different forms and in many different places. If you are or you will be working in the healthcare field, whether it be residential care facilities, physician’s office or hospitals, I beg you to please take a step back and reflect. Authoritarianism and healthcare don’t go together. We should be wiser. We should know better.

Article citation:

BATES, & STICKLEY, T. (2013). Confronting Goffman: how can mental health nurses effectively challenge stigma? A critical review of the literature: Confronting Goffman. Journal of Psychiatric and Mental Health Nursing, 20(7), 569–575. https://doi.org/10.1111/j.1365-2850.2012.01957.x

Telehealth and Early Intervention: How Effective Is It? by Pediatrics Trainee Sarah Safdar

Since the start of the COVID-19 pandemic, healthcare systems have largely adopted the use of telehealth to provide outpatient services. This includes office visits, but also extends to therapies provided by Early Intervention. In general, the use of telehealth has been proven to be largely effective for medical appointments, to the point that many healthcare providers across different specialties are opting to continue using it by choice. One reason for this is the convenience factor, with eliminating travel time and reducing possible COVID-19 exposures. However, is telehealth a one-size fits all solution?

In my role as a fellow training in Developmental and Behavioral Pediatrics, I encounter families daily who have children with developmental delays or autism who receive therapies such as speech therapy, occupational therapy, developmental therapy, and physical therapy. Talking with patients and families over the past few months, I have found that a large percentage of families have faced challenges with this system. Many families have opted for their child to stop receiving therapies if they were offered virtually, because it was too hard for the child to focus, so it ended up not being worth it for them. These children are losing out on therapy time in their most crucial years of development; I worry about the long-term effects of this.

I decided to explore this issue further and am conducting my LEND research project on the topic of parent satisfaction of live video visits in early intervention. Since this is a relatively recent issue, I think it will be interesting to collect feedback from families and determine the specific challenges. As virtual visits seem to be here to stay to some extent, having this data might allow us to come up with more effective strategies for how to deliver Early Intervention services. This could include focusing on parent-training for virtual therapies, or requiring certain therapies to be in-person with appropriate precautions. As healthcare providers, I feel that we have to do more to ensure that children are not falling through the cracks of the healthcare system as we shift into the new reality of a post-pandemic world.

The following is a useful guide created by the Early Intervention Training Program at the University of Illinois to help providers optimize therapy sessions conducted via live video visit:

Additional information:
https://eitp.education.illinois.edu/Files/COVID19/LVVtips.pdf

https://emails.illinois.edu/newsletter/788072580.html

Attention Behavior Analysts: A Changing Role by Applied Behavior Analysis Trainee, Amanda Chastain

In recent years, the voices of some consumers of Applied Behavior Analysis (ABA) have been calling for change. While many behavior analysts have begun to make changes in response to these criticisms, we can and should continue to listen and do better. Part of this involves sharing what we have learned with other practicing behavior analysts who are willing to listen. The purpose of this entry is to spread the word regarding one such change: we should no longer be setting client goals solely because of the “social stigma” that displaying or not displaying certain behaviors may cause.

When I was just getting started in the field, I learned that one reason for targeting a particular behavior was that the behavior excess or deficit was socially stigmatizing. The rationale for this was that the child would ultimately suffer if we did not help them correct the behavior, as it would make them stand out against their typically developing peers. I do think this is a reflection of our societal values at the time, and have thankfully seen change occur. However, this change has not yet spread across the entire practice. Knowing what I know now, it is clear that there are major flaws with upholding this societal preference, and I question the ethics of programming based solely on that rule that I once learned. I am sorry to those who I worked with under that assumption, and I am taking this opportunity now to reach those who continue to practice under those guidelines with the hope that you will also learn to do better.

The first thing to understand is that the “norm” that we are holding our clients to is completely made up by those who have held power in society and is what continues to disable members of society. When one is attempting to make someone fit better into the expectations of such a standard, one has to ask themselves, “Who is this benefiting?”. I can promise you that the answer is rarely ever going to be “my client” especially when mental health is taken into consideration. Second, deviation from this norm is expected and is a wonderful thing in terms of the evolution of a species and culture. We should not be generating behavior intervention plans to reduce or eliminate behaviors solely because they deviate from this norm. It is also important to recognize that many of us who are generating the therapeutic programming possess our own biases for what is “normal” which depends on our own cultural background and learning history. Who the heck are we to make this decision for another human being? It is critical that we recognize our own biases, acknowledge them and let them go in this context so that we can keep the values and goals of our clients in mind. 

To put it as clearly as I possibly can - We should never target a behavior solely because it is socially stigmatizing! I am not being naïve when making this statement. I have worked in this field for quite some time now and have seen kids get picked on because they are different. I have seen parents try to protect them or to push for “normalcy” within their own expectations of what normal is. I think this is where we have to remember our purpose and who we serve. I understand that some of these beliefs and practices are embedded within certain cultures, and while we should be sensitive to culture, we should also be discussing ableism and acceptance of neurodiversity with parents who are asking you to target “socially stigmatizing” behaviors that I would argue are unethical to target.

That being said, we have more work to do given the current unfortunate stigma that is attached to difference. It would be wonderful if we lived in a world where being different could always be seen as beautiful, and many are fighting hard for that world. In the meantime, we should support our clients in becoming better equipped for the current world. We should be teaching skills like assertiveness, what to do when someone is bullying them, how to say no or negotiate when they don’t agree, the power of setting and keeping boundaries, skills to identify and work towards their own values and goals, and coping skills to get through those tough moments that every human being has. This is by no means an exhaustive list, nor are these skills that we should only be teaching autistic children or others with disabilities. These are useful skills for everyone. For those with differences that do perhaps carry a stigma in the current world, we should also be keeping an eye out for internal ableism so that we can support them. A growing understanding of the human condition through the science of behavior has given us powerful tools, such as Acceptance and Commitment Therapy, that can offer support in developing a more flexible identity across contexts and a different viewpoint on the expectations put forth by society.

Still, it doesn’t end there. Behavior Analysis is so much more than ABA intervention for those with developmental delays. We are a science of human behavior and have the tools to generate change at the societal level. We should be using our science to alter the discourse around deviation from the norm to create a more accepting world. We need to be working with parents, teachers, and other members of the communities that we work in to teach them that different does not equate to broken or bad. This is a call to action for all behavior analysts to re-think any treatment plan that is in place for the sole purpose of reducing social stigma. It does more harm than good in the long run, and I argue that we have a different role to play in these situations. One that spreads individuality and acceptance. 

Four human body figures all shaded in blue with no features and small pink heart in each body. from left to right - adult woman figure. child girl figure with rainbow oval in head. boy child. adult male with rainbow oval in head. Children figures holding hands. all on green grass and blue sky background.

The Night’s Watch by Danielle Hoffman, Family Advocate Trainee

Well, it’s 2:30am. My shift of the “Night’s Watch” technically ended an hour ago but given my second wind and tendency to want to be the family hero, I have not yet woken up my husband to pass the torch. Despite trying to take one for the team, my 5-year-old daughter will not give me a pass when she wakes up at 6:00am sharp. It all won’t really matter anyways, because we have to be out the door by 7:15am to get to work and school. 

My almost 3-year old son, Rowen, requires a trained caregiver (parent) or a nurse to be awake and alert with him 24 hours a day because he has a tracheostomy and a ventilator to sleep. We are blessed with an incredible team of nurses who have become a part of our family over the past few years. But we are at the mercy of these five individuals who keep our household running. They are the reason we can go to work in the morning and lay our heads down on our pillows at night. The nurses have quite a bit of flexibility in their scheduling and the nursing shortage means that we depend on nurses choosing to pick-up extra shifts. So often our ability to access a basic human need (sleep) is dictated by whether or not Patricia is “on again” with her boyfriend and no longer feels like working Saturday nights or if Thomas needs to save some extra cash for his travel next month.

Our Thursday night nurse has moved to San Diego, so this might be what life looks like for a little while. Sure, the nursing company scheduling wizards will eventually come up with a loosely pieced together, short-sighted solution that might work for a month. But we will soon find ourselves stranded, once again, thankful at least for the month of Thursdays in which we got to sleep.

Night nursing coverage at the Hoffman House is essential. We also have day jobs. Our medically complicated child has a sibling who needs care. Intermittent sleeplessness is surmountable but chronic sleeplessness is impossible. It’s not that I don’t look forward to the occasional night shift. It’s completely quiet in the house, save for the sound of the ventilator gently pushing air in and out of Rowen’s adorable, peaceful, soundly-sleeping toddler body. Sometimes it’s the best time to get LEND assignments done, finally fold that mountain of laundry and maybe even watch something on Netflix that has been selected for viewing without any form of companion compromise. Like every other mom on the planet, I am fully aware that quiet time is to be cherished and so even when it is the middle of the night, I appreciate it.

But then comes the next day. Quite honestly, it’s even the days to come after that. I’m at work and someone is looking to me to make a decision and yet the words coming out of their mouth are just not adding up quite right. Or it is the weekend and I want to capitalize on the two short days a week that we get to spend as a family and so when the kids want to swing at the park, play at the pool, host friends for a bbq with a slip n’ slide and stay up extra late having a special movie night all in the same day, we say yes, but lack the energy to be our best selves in those moments. Those few “bonus” hours in the middle of the night end up impacting our ability to function in a productive manner for days afterward, let alone our ability to react quickly and soundly in the event of a medical emergency, which is essential for our son’s safety.  

Sometimes it feels as if we are in a small boat in the middle of the ocean. In general, the boat is in good, working condition and we have two oars to steer us in the direction in which we need to head. Once in a while it gets a small hole that we are able to repair relatively quickly in order to stay afloat. For a while I thought that Rowen might grow out of his ventilator needs and that we would finally get to dry land and be able to roam freely again. But as time goes on and it sets in that this might be a lifelong journey of in-home nursing needs, it occurs to me that this boat is only going to endure more and more storms and at some point we might be slowly sinking in the middle of the ocean with no one left around to save us.

The reality is, we’re not the only boat out in this storm. There is an extreme nursing shortage across the country and most families like mine haven’t seen respite in months or even years. There is no babysitter option. No daycare. You cannot simply call up the grandparents or the neighbor and ask them to watch your child for a few hours while you catch up on some sleep or step out to grab some groceries. No one else is trained to understand the ventilator and respond to a breathing emergency that could save the life of your child. Forget working if you can’t find a nurse to staff your case. If you rely on Medicaid (which is likely because now you can’t work), the nursing agencies are less likely to staff your case because the reimbursement rate is half of that of individuals with private insurance. Families like mine are often boats in the storm, doing their best to stay afloat.

So what are your options?

The truth is that currently there aren’t many, and the population of children with medical complexities living at home is only growing in size. This is something Dr. Sarah Sobotka aims to fix through her research of the pediatric trach/vent population. This article points to some solutions that Dr. Sobotka has suggested to start alleviating this pressing issue that is directly impacting families like mine. And that handsome smiling boy featured? That is the boy who fills our boat with sunshine and cheers us on as we keep on rowing.

https://www.uchicagomedicine.org/forefront/pediatrics-articles/medical-complexity-pediatric-home-health

To Professionals: Notes On Guiding Parents After an Autism Diagnosis by Ellie Renz

There is no unified response.  Sometimes, there is relief; you see a loosening in their shoulders, a little less weariness in their faces.  They take a deep breath, and it seems like the first full breath in a long time. It might be fear, you may see the worries compound in an instant, the lost look of someone that isn’t even sure what to ask first.  It could be grief, or denial, or devastation, or contentment, or anger. 

When finding out a child is autistic, the reactions will vary.

One often hears parents say, “I wouldn’t change my child for the world, but I would change the world for my child.”  This colloquial phrase begs each of us to ask ourselves the question, “How do I impact the world around me?”  As a clinician, a professional, a human being, how does the way you exist and interact within your professional world affect the lives of the families with which you work?

So, I ask you to reflect.

Pay attention to the language you use. Know preferred terms, and offensive ones, and understand that they may evolve. Be respectful, defer to the individual, and get information from a variety of sources, including (and centering) autistic and disabled individuals themselves. Know that the words you choose to use regarding autism and disability are critical and shape the way families and parents think about their loved ones.  Know that the words you choose mean very little if you do not believe what you are saying.  Understand that your beliefs, perceptions, and true character will show through, regardless of your words.

Give the parents and loved ones facts. Don’t apologize (in words or actions).  Do not walk in with a somber face and say, “I’m so sorry, but your child has autism.” Try not to perpetuate the trope of autism as tragedy.  Explain the diagnosis, the options.  Instill hope.  Talk about the child’s strengths and potential.  Acknowledge fears but do not enhance them.  Do not perseverate on anticipated challenges.  Instill hope.

Provide a range of information in accessible ways. Explain things, check for understanding, and send the information home. Use visuals, give parents links to videos, podcasts, and blogs. Ask parents the mode in which they learn best and amplify applicable resources. Provide information on how to talk about autism to other family members and loved ones. Ask them to tell you when they are overwhelmed with information and take time to check in periodically, too.  Crucially, teach them how to search for resources/information on their own and how to evaluate sources for legitimacy.  They will need more, and you will not always be there.

Depending on the duration and nature of your professional relationship, discuss different models of disability. Talk about the medical model, the social model, and the neurodiversity paradigm.  Explore the impact these models have on aspects of life.

Connect the family with others in the autistic community.  Know the support groups in your area.  Maintain a list of books, websites, blogs, movies, companies, podcasts, videos, and articles created by autistic individuals. 

Be genuine. Parents and loved ones will look to you for guidance, for reassurance, for answers.  While you do not need (or can possibly have) all the answers, be the needed support when possible and direct parents to other support when it cannot be you.

I am asking you to reflect. I am asking you to feel the full weight of the potential impact you have on the parents, children, and families with which you interact, not so you are harmed by the pressure, but so you remember to be intentional in your words and actions. Autistic children will grow into autistic teenagers and autistic adults and are not condemned to a life of tragedy and pain.  Help create a society that fosters the autonomy, dignity, and self-determination of autistic individuals. Life may be different for autistic individuals, but it doesn’t have to be less.

Remember that.

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