Collaborating with culturally diverse families: a story of Korean American mothers of children with autism by Veronica Kang

What are the experiences of Korean American mothers of children with autism? Dr. Sunyoung Kim in the Department of Special Education at the University of Illinois at Chicago and her team (2020) conducted an interview study with five Korean American mothers who have a child with autism between the ages of 7 and 10 years. They found four main themes from the interviews.

1.     Mothers found it challenging to search for and set up services due to emotional stress (e.g., “We first thought about setting up services quickly after his diagnosis. Then, depression came back and forth … each time it came, it was hard”), economic and social status constraints (e.g., “He couldn’t get benefits because he was not a U.S. citizen”), and linguistic barriers (e.g., “I have a lot of paperwork … it’s really stressful when it’s in English”).

2.     Mothers discussed the impact of autism on the sibling relationship. One mother, Hana, said, “My first child can manage kids well. He loves my second child with autism … before the third one was born, they were best friends. He has great compassion … That helps children’s emotional development … having a second one with disability. Most kids don’t know that’s good for them educationally.” Another mother, Min-Ju, said, “Tina and Tina’s younger brother often fought … it is not a fight … Max couldn’t stand Tina’s behaviors. So I explained, Tina is special … Max seemed to understand a little bit.”

3.     Mothers discussed the impact of autism on their personal lives. Mothers often expressed guilt by stating “I am not doing a good job as a mother”, “I push myself so hard”, and  “I am getting through my life without being myself”. Mothers also explained a sense of social isolation when they said, “I cannot build a relationship” and “I feel isolated but I feel a sense of fruitfulness if I do a little thing for my kids”. As most mothers in this study immigrated to the U.S. in their adulthood, the findings show that culturally diverse mothers may benefit from additional social support to build meaningful connection, linguistic support (e.g., translation), emotional, and practical support (e.g., navigation through the system). 

4.     While most mothers reported satisfaction in their relationship with the teachers, they also reported low levels of expectation with the school services. One mother, Min-Ju, said, “It would be good if the school could do better and provide more services, but it’s okay since we receive therapy outside of school”. This could be due to the lack of opportunity to observe therapies within the school system, as described by Hana. Also, all mothers believed the duration or length of therapy at school was limited. Particularly, mothers desired for more opportunities for their children’s social skills development at school.

What is the main take away for us as LEND trainees? The findings align with previous research (Lee & Park, 2016; Park & Turnbull, 2001). Whether it is the language, culture, economic constraints, or lack of knowledge of the system, culturally diverse families may experience confusion, stress, and guilt as suggested by current research. More support to address language barriers, emotional well-being, and navigation through the system is clearly needed (Cho & Gannotti, 2005; Yan et al., 2017). In the context of education, Trainor (2010) highlighted the importance of home-school partnership in promoting learning and growth of the students. Regardless of the discipline, I believe that our efforts to facilitate and engage in family-professional partnership and culturally responsive practices will be critical in enhancing the family experiences.

In lay terms, I suggest that we, as practitioners, researchers, and leaders ...

1.     actively take time to engage and build relationship with the family members

2.     put families first and at the center of our practice, especially when we are having team meetings, setting goals, making decisions, evaluating progress, and even implementing intervention

3.     use visuals or written materials for families to take home

4.     provide a clearly summarized document rather than (or in addition to) a lengthy stack of paperwork

5.     use translation apps, if possible, to translate some, if not all, parts of the materials

6.     interact with families with “kindness and empathy”, as one parent said during a LEND family visit.

If you have other suggestions, concerns, or feedback, I would love to learn and hear from you.

I hope this blog post provided an opportunity for us to reflect on how we engage ourselves with families who may not speak English as their first language, frequently have questions, or at times seem confused or frustrated because they are not familiar with the system, the terminologies, or the service delivery process. Just as it applies to all parts of our lives, I am reminded today to have “kindness and empathy”. As Maya Angelou said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Image description: The left side of the image is Maya Angelou, an African American woman with short, curly, brown and gray hair, wearing a pair of large, gold hoop earrings, a gold necklace, and a brown, lacy top. The right side of the image is text stating, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. Maya Angelou”.

References 

Cho, S. J., & Gannotti, M. E. (2005). Korean-American mothers’ perception of professional support in early intervention and special education programs. Journal of Policy and Practice in Intellectual Disabilities, 2(1), 1–9.

Kim, S., Kim, H., Kim, J., Nichols, S.C., & Kang, V.Y. (2020). Experiences and impact of having children with autism spectrum disorder on the lives of their Korean-American mothers.

Exceptionality. Advanced published online.

Lee, Y. J., & Park, H. J. (2016). Becoming a parent of a child with special needs: Perspectives from Korean mothers living in the United States. International Journal of Disability, Development and Education, 63, 593–607.

Park, J., & Turnbull, A. P. (2001). Cross-cultural competency and special education: Perceptions and experiences of Korean parents of children with special needs. Education and Training in Mental Retardation and Developmental

Disabilities, 36(2), 133–147.

Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47.

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

From Impairment to Community, what Disability Means to me by Daniel Lakemacher

For most of my life, I’ve recognized that I’m different, but the stories I’ve told to make sense of myself as an anomaly have changed a lot over the years. This is as true for the explanations I’ve given to others as it is for the narrative I’ve told myself. A turning point that brought those internal and external stories closer together was being diagnosed with autism and ADHD in my thirties. 

Somehow this news came as equal parts shock and a “no duh” confirmation of what I already knew. After the first diagnosis, I was trying to process it with a therapist and she mentioned something about coping with disability. Completely oblivious to my internalized ableism, my knee-jerk reaction that I defended for years was to reject that framing as irrelevant and perhaps even insulting. The therapist took the hint about how little I could handle at that moment and didn’t push the point. Years later, I can acknowledge the fear I instinctively sought to hide as well as the combination of ignorance and denial that caused it.

Writing this now, I’m by no means fearless when it comes to sharing about disability, but I think I’m a little less ignorant and a lot more accepting. Today, I recognize that being disabled is part of who I am, and it’s neither my fault nor something in me that requires fixing. This isn’t a change that happened through therapy or from studying and self-reflection, even if all three of those played some part. The key to changing my perspective was socializing with people who valued their shared experience of disability as the foundation for building an empowering community.

This didn’t happen all at once and it began in snippets online through finding YouTube channels like “How to ADHD” by Jessica McCabe and learning about the neurodiversity movement from popular writers such as Steve Silberman and John Elder Robison. As I quickly learned, evading the term disability wasn’t uncommon even in forums in which it seems like disability is the central issue. For example, more than four years after starting her ADHD-focused channel, and with more than half a million subscribers, Jessica McCabe grapples with questions like, “Am I disabled?” and “What does disability really mean?” in her most recent video. I’m not highlighting this as a shortcoming of Jessica’s, but I share it as an example of how strongly stigmatized the word disability is given that identifying with it can be a struggle even for those whose relative celebrity status is built around disability in principle if not in name. 

    Moving from online to in-person interactions, I enrolled in a graduate program at the University of Illinois at Urbana-Champaign and accelerated my opportunities to explore what disability could mean. Unlike during undergrad, having a documented diagnosis meant I could seek accommodations through the campus disability office. From there, I met a group of students interested in forming a local chapter of a national organization called DREAM (Disability Rights, Education, Activism, and Mentoring). 

Within these newfound friendships, I saw how the word disability didn’t function as an impairment-based label that defined us by what we couldn’t do. Instead, DREAM allowed me to experience how acknowledging disability as part of my identity could connect me with a powerful movement of people who are unwilling to accept the limitations placed on them by an ableist society. Disability can look extremely different from one person to the next, or it can “look” like nothing at all as poignantly noted by Israel Sanchez in his IL LEND November 2020 blogpost in which he chaffs at being told, “You don’t look like you’re autistic.” I’m sure the stories I tell to make sense of my life will continue to change, but I’m confident that as they do, my use of the word disability will increasingly be associated with references to supportive community rather than my own impairment.

AUCD Conference Blog Post: A reflection By Mary Jansen, Student PT

The AUCD Conference is normally held in Washington DC, but given our current situation as a society, the 2020 conference was a virtual event.  While a virtual event may not be as exciting of an experience as an actual live conference, I am almost certain that I would not have been able to attend the conference if it had been in Washington DC.  I am so incredibly grateful that I was able to Zoom into the different plenaries and concurrent sessions; each was very beneficial to me as a trainee and I plan on reflecting back on this experience often during my future career as a physical therapist. 

While I feel that I learned something new during each concurrent session that I attended, there are two main concepts that really stuck out to me.  The first idea was discussed during the opening plenary on Monday December 7th.  The speaker presented a picture of a big, healthy tree with many green leaves, some low hanging fruit, and large roots.  There were several groups of people in the green grass surrounding this tree, and each group of people were visiting a gravestone.  This tree is called the tree of health and represents society and the social determinants of health.  The tree’s fruit is a result of what the tree is fed by society, and unfortunately the tree has roots in racism, sexism, classism and many other harmful concepts.  This causes the fruit to be poisonous; instead of being nourishing, the fruit harms those who eat it.  The way that the speaker presented this tress made it seem as if this was a fairly well-known concept, but it was new to me.  Seeing this tree and hearing the explanation behind it made me realize how prevalent health disparities are in our society.  If we are to truly make a change in the lives of those we treat who have been harmed by the metaphorical fruit of this tree, then we need to address the root of the problem and enact change from the bottom up.

A second idea that really struck me during the conference was the concept, or should I say myth, that ‘one size fits all.’  The concurrent session I attended on Tuesday December 8th entitled “Cultural Competency to Promote Diversity ‘Equity’ and Inclusion: Examples from the field” opened with a video about red high heeled shoes.  The video talked about how this specific pair of shoes are not reasonable for everybody.  Some people might need a different size, while some may not like the color red.  Other people might get blisters form this shoe, while others might not be able to balance in a heeled shoe.  If everybody had these same shoes things would be equal, but not equitable.  In order to provide equitable care, things need to be individualized for each patient based on their specific background and needs.  Making individualized treatment plans for patients is a huge concept that has been covered over and over again in my current PT and LEND curriculums, but seeing this video really cemented my understanding of why individualization is important.  The video about the red shoes really heightened my appreciation of the facts that equality is not the same as equity, and that ‘one size does NOT fit all.’  I will need to always keep this in mind if I am to provide truly equitable care for my future patients.

As I said before, I am so grateful that I was able to attend this conference.  It was eye opening and a very meaningful experience to me personally.  I hope that one day I am able to attend an AUCD conference in DC, but until that time, I will make the most of what I learned from the 2020 virtual conference by sharing with my peers and incorporating it into my education and future career. 

Picture Description: Screenshot from the 2020 AUCD conference opening plenary.  The image is of a tree that the speaker called the tree of health.  The tree is tall with lots of green leaves, fruit, and large roots growing from the green grass.  There are several groups of people visiting tombstones in the grass around the tree. 

Coffee & Spoons by Melinda Miller, BCBA

Sometimes, there are simply not enough cups of coffee in the world to get me through the day.

Don’t even get me started on my spoons.

There was a period of time where my morning alarm came in the sound of giggles and VeggieTales quotes from the next room over. By “period of time” I mean years. And by “morning” I mean o-dark-thirty. The spunky ball of energy making sure I was up is my daughter who was diagnosed with ASD at age 2 ½.

As I write this, we have just passed a decade from diagnosis. My, how things have changed.

I was a young Mom of two, newly married, receiving government benefits and just barely making it by. We dyed spaghetti noodles with food coloring to shake things up a bit. Our outings consisted of going to all the parks in the surrounding area and the grocery store once a week. Once the diagnoses came rolling in for the kids, I became a therapist on top of my motherly duties. Therapy was expensive, exclusive, and far away - especially for someone on government aid. The internet became my best friend. My house looked like an OT gym - yoga balls, trampoline, net swing - you name it, we had it.

I wouldn’t trade those moments for the world.

As a parent of two Autistic children, I know the struggle, the fear, the guilt, the pain, the existential dread that rides sidecar with the “normal” everyday struggles of daily living. However, I also know immense joy, love, compassion and empathy that squish all those other things out of the way. Whenever I meet a parent who has recently gotten their child’s diagnosis, I greet them with open arms and say, “Welcome to the club!” Because, truly, Autism is a beautiful journey.

I remember one time, I had a student say, “Autism sucks.” It broke my heart. I sat across from him and proceeded to tell him all the things I thought were amazing about him: an infectious smile and laugh, the incredible ability to draw complex mazes and screenshots from memory, and the compassion he had for his classmates. Autism is amazing and Autistics need to be told that.

My son is also Autistic. So, not only did I get one invitation to the Autism party - I got two! You couldn’t ask for two more different kiddos. My son sleeps like a champ and I’m so grateful at least one of them does. Other than marvelous sleeping habits, he has the most incredible memory - especially for history. His creativity is off the charts and has the ability to morph into numerous characters. Does he suck at math though? Absolutely. Does he have trouble with logic and sequence? You betcha. His brain works differently than most and that’s ok! That’s what supports are for. And, he and I are learning together, that high school support operates on a different plane of existence than middle school.

My daughter is super cool, too. She is incredibly independent, she’s funny, full of sass, and freaking LOVES slime. She understands way more than she lets on and we are grateful for a team that communicates so she doesn’t get away with any funny-business.

Autism is great. It’s also hard. Very hard. I would be lying to you if I said otherwise. It’s a lot of long, hard hours and sleepless nights but when you have those moments - those “a-ha!” moments, it makes it all worth it. It was years - YEARS - until I first heard “I love you Mommy” from my kids. And I treasure those moments. I treasure the first “I luh oo” and the first full “I love you, Mommy”. My life has been enriched because of my kiddos. If it wasn’t for them, I wouldn’t have gone down my career path - first in special education, then adult services, and now behavior analysis.

Disability is beautiful. Each person is unique and brings something awesome to the table. We need to acknowledge that - privately AND publicly. Tell people how awesome they are - it means so much, especially when they’re running low on coffee and spoons.

Thanks for stopping by.

I am glad you exist.

Adapting to New Routines by Zhihui Yi

Changes in daily routine can be hard. With the holiday season and the winter break coming up, many school-aged children’s schedules are about to be changed. On top of that, the COVID-19 pandemic adds additional uncertainties to this year. These changes in routine can be especially challenging for children with a diagnosis of autism, as research has shown that unpredictability can be a source of stress. Here are some simple techniques you can try out at home to make these transitions a little easier.

1. Use the Grandma’s Rule. When it comes to grandma’s bag of tricks with children, you may picture them saying “go clean up your rooms first and then you can have your cookie!” This is exactly what the grandma’s rule is in a nutshell. The grandma’s rule is a way of presenting instructions where you frame your requests as “first XXX, then XXX”. Doing so will not only decrease the unpredictability, since you’re laying out what are going to happen, but also specifying what will happen once the request is completed (aka, the consequence). You can use this language in many situations in your child’s daily routine.

2. Work out a “predictable” schedule. Another way to decrease the unpredictability is to being upfront with what the new routine will look like. No one loves keeping accommodating to surprises. Working out a new schedule beforehand and stick to it often makes the transitions easier. You can then post it on the wall, mark it on the colander, and try your best to stick to it.

3. Find alternatives. One thing that makes changes in routine difficult is that some of the things we enjoyed may not be available anymore. Maybe it is a holiday tradition that everyone goes to grandma’s house for a big thanksgiving dinner, but you might get disappointed this year due to COVID. In situations like this, you can try to find alternative ways to achieve the same goal. Instead of meeting in person, you can try to FaceTime during thanksgiving dinner. Instead of exchanging presents in person, you can plan and mail them out ahead, so they’ll arrive before Christmas.

4. Involve the child! Perhaps the most important step is to make sure that you include your child throughout the whole process. Don’t make them a passive “receiver” of change. Instead, ask them how they’d like to do among the options that are available. Keep having an open conversation and being flexible to make adjustments as needed is the key as the whole family accommodates to the reality we now live in.

People exchange presents.

An Unusual Post-High School Transition: My Personal Story By Lauren Bryant, Self-Advocate Trainee

For most students with a disability, the transition to college is difficult. There are many more factors students with disabilities must take into account when making a commitment to attend a specific school.

For example, when I was looking at colleges to attend, I had to make sure I could receive assistance with my activities of daily living, particularly overnight. I eventually narrowed my options down to three schools; the University of Illinois at Urbana-Champaign, the University of Wisconsin-Madison, or the University of Wisconsin Whitewater. My senior year, I applied to these schools and unfortunately did not get accepted to any of them. Now my parents and I needed to figure out what to do; I would be done with my K-12 education, but they still needed to go to work and I needed somewhere to go and something to do during the work and school week.

White woman with long brown hair and purple glasses sits in a wheelchair outside. She is wearing a graduation cap and gown.

At this time, I had not graduated from high school. During my last IEP meeting, my high school’s director of special education was on maternity leave, so we were primarily dealing with the district’s head of special education. We expressed a fear of me having nothing to do or anywhere to go after graduation, and although spending time in my school’s transition program was an option, it was not a very good one. The program was intended for students with moderate to severe intellectual/developmental disabilities, and it was unlikely I would gain any useful skills in a program like that. Instead, my parents and I asked our district’s head of special education if it might be possible for us to create our own transition. She agreed, and I spent a year taking classes at our local career and technical education center while working on other transitional skills such as work experience.

After a minimally helpful year (the one-on-one aide I was assigned proved to be more of a hinderance than a help to my goals) and another rejection from UIUC, by sheer luck we learned about another program located in Chicago; the Illinois Center for Rehabilitation and Education – Roosevelt (ICRE). ICRE, according to their website, is “a residential school for students with severe physical disabilities and other health impairments”. I lived there for two years, coming home on weekends, which was my first experience being away from home for an extended period of time. While there, I took online classes through College of DuPage, my local community college, in order to increase my chances of getting into UIUC. I applied for the third time during my last year of ICRE and got accepted!

While my years of transition were not the smoothest that they could have been, I am grateful for the practice they gave me in advocating for myself and learning time management skills. Coming to college was still hard, don’t get me wrong, but the years of practice I had before I got here made it at least a little easier.

References:

About TCD / Information. (n.d.). Retrieved November 01, 2020, from https://www.tcdupage.org/domain/60

Living Life with High-Functioning Autism by Israel Sanchez

“You don’t look like you’re Autistic”, says every person that learns about my disability. It is

certainly ok to call the above quote a cliché, because it is. Just about any article that details the

experiences of someone with Autism has this phrase encoded somewhere in the text. That is for

good reason, because from first-hand experience, it's one of the only things that people could

muster up when they learn that someone has Autism. Although I absolutely HATE when people

tell me this, I sort of have an internal dopamine rush whenever someone tells me this. It lets me

know that I can control my disability to a point where it is no longer visible to the untrained public

eye. To get to this point means a lot not only for me, but also for my family and supports, who

put up with my, shall we say, difficult antics for the past 17 years. It took a lot to get to this point,

but I realize that it is important for me to transcribe some of the things that I went through. It’s

going to be somewhat embarrassing for me to relive moments that I would rather purge out of

my mind, but for the sake of advocacy and knowledge, I would get them out of the dark and dust

them off for you readers.

In sixth-grade, the desire to make friends started to manifest in me. Rather than make a nice,

modest set of friends, I decided that it would be better to become the class clown. So I decided

to pull a stunt that STILL makes me cringe to this day. This stunt was that I fell off of a chair in

front of the class. Nothing like physical comedy to rile up those crowds. Needless to say the

stunt didn’t work and only served to embarrass myself. Other antics include saying mindless

stuff in front of class, and telling stupid stories. Soon after middle-school and into freshman year

of high-school, this behavior started to stop. I became antisocial and absolutely mortified of

conversation. I thought that the moment I opened my mouth, I would become absolutely

despised. Whenever socialization would force itself on me, I would become overwhelmed, as if

socializing with someone isn’t supposed to happen to an autist like me. As the years of high

school elapsed, the desire to learn how to socialize became stronger. Although I continued to

avoid interaction, the urge to try it became harder to ignore. Finally, during my senior year, I

started to put in efforts to satisfy this desire. However, these efforts were somewhat menial, and

while I DID socialize with a few individuals, I definitely had more opportunities to make progress.

I would rarely take on opportunities to converse. I just wasn’t far enough from my comfort zone

to do so.

When I went to college, I was scared. I thought of college as this harsh place where professors

find joy in overwhelming their students with Stanford-level homework and tests. However, this

couldn’t be further from the truth. My professors were all relaxed and down-to-earth, and the

students there were nice. It was after attending my first ever college class where I finally

escaped the shell that has debilitated my ability to socialize. I not only began conversing more

frequently, but I actually began to ENJOY talking to people. No longer did I turn off people after

conversations.

Now, as I am writing this blog and shuddering from the remembrance of

embarrassing stories, I feel as though I have found the recipe to enjoy life while incorporating

my disability into my personality. I used to absolutely ABHOR my disability, and scrutinize ways

to completely eradicate it from my persona. But now, with the help of LEND and social

acceptance, I grew to not only let it be, but also to accept it as a part of me. Although I continue

to struggle with sensory overload and hyperactivity, I know that all of the fascinations and

manifestations are a part of me. I hope you took my experience to heart, and use it to educate

yourself and the public about Autism.

The Intersection Between Congenital Cardiac Issues and Developmental Delays By Mary Jansen, Student Physical Therapist Trainee

It’s a long title, I know. Let’s break it down: Congenital cardiac issues refers to babies born with a heart defect, and developmental delays could mean any sort of interruption in normal development of executive function, language, social skills, or growth.  These two topics may seem quite different, but are actually very much related.  There is an inherent link between babies who are born with congenital heart conditions and their development. 

 Think about it: if a baby is born with a heart condition that requires immediate surgery, follow up appointments, and possible future surgeries all within the first few years of its life, does this baby have the same developmental opportunities as other babies?  During the early years of life, it is very important for infants to explore and interact with a variety of environments so they can learn, grow and develop both mentally and physically.  However, a baby who spends their first few months of life in a NICU and having heart surgeries does not have this opportunity.  Instead, this baby is subjected to stress early in life that can cause a delay in normal development. 

It is very common for infants to be seen by physical therapists after undergoing a heart surgery.  The goal of this therapy is to help the infant build up their endurance and physical function to avoid the risk of developing a decreased tolerance to exercise and altered sympathetic response to exercise as they grow.  However, a baby with a congenital heart defect is not only at a higher risk of delayed physical development, but also mental and neurological development.  In fact, studies show that about 50% of these infants will have a neurodevelopmental disability following surgical interventions for congenital heart lesions.    Limited opportunities to interact with a variety of environments also puts these infants at a greater risk of having social functioning issues and neurocognitive impairments. 

While physical therapy may give these babies new opportunities to explore their environment and move functionally, it is also important that these infants are screened for other neurodevelopmental conditions.  As providers, we can perform these screenings and be advocates to make sure these infants receive proper care.  For example, children with congenital heart conditions are 33% more likely to be diagnosed with autism.   By advocating for early autism screenings for this patient population, we can do our part as healthcare workers to make sure these infants and their families are well supported and have all the resources they need. 

Alt. Text: Image from AHA journal article Neurodevelopmental Outcomes in Children with Congenital Heart Disease: Evaluation and Management. The horizontal x-axis of the graph is labeled “Complexity of Congenital heart Disease” and the vertical y-axis is labeled “Prevalence of Neurodevelopmental Impairment.” The far-left column is mostly white, meaning there is a small prevalence of neurodevelopmental impairment with mild complexity congenital heart disease. As you move across the graph to the right, the bars become more light gray (mild or combined disabilities) and dark gray (severe impairment). This shows that as the complexity of the congenital heart disease increases, so does the likelihood of neurodevelopmental impairment.

Check out these other resources!

Predictors of developmental disabilities after open heart surgery in young children with congenital heart defects

New Links Between Autism and Congenital Heart Disease

The Brain in Congenital Heart Disease across the Lifespan: The Cumulative Burden of Injury

Considering the Families of Individuals with Neurodevelopmental Disabilities by Jason Brooks, MSN-GE

The unfortunate truth is that parents of individuals with autism spectrum disorders (ASD) often report high levels of stress and mental health problems associated with the challenges of caring for individuals with complex needs (Weiss, Wingsiong, Lunsky, 2014). Murphy and Verden (2012) state succinctly that “The stress involved in parenting can be overwhelming; the stress involved in parenting a child with autism can be consuming.” It may be true that parents more often than not possess deep, innate feelings of love/passion/energy for their children. However, this alone, with no supplemental support, is not always enough to address the underlying risk factors associated with the challenges of caring for individuals with neurodevelopmental considerations.

Image description: A woman sits on a blue couch with legs and arms crossed holding her closed fist over her mouth with eyes open.

Image retrieved from: https://www.centralpennparent.com/2018/8-tips-for-managing-stress-for-parents-of-special-needs-children/

Self-efficacy can be generally defined as one’s personal belief in one’s capabilities. A systematic review of parent interventions and self-efficacy by Hohlfeld, Harty, and Engel (2018) showed that parent training programs were effective in increasing parental self-efficacy in parents of children with neurodevelopmental disabilities. This increase in self-efficacy not only directly correlates to more positive outcomes in children with neurodevelopmental disabilities, but also correlates with a decrease in stress, as well as the decrease in the development of mental health issues. This is particulate noteworthy because by addressing the issue of low self-efficacy, or the feelings of “I just can’t do this”, or “This is too much for me to handle”, in parents of children with neurodevelopmental disabilities, we address “2 birds with 1 stone.” Family members are often the primary, unpaid, and overburdened source of support for person’s with disabilities (Grossman, Magaña, 2016). By focusing directly on managing and treating the parents, we accomplish providing increased outcomes for both the parents as well as their children. This also ensures that parents are not overlooked for possible stress, anxiety, depression, or other mental health considerations that can often develop associated with raising children with neurodevelopmental disabilities.

Image description: A family of six including four children and two parents pose together for a picture all smiling and appearing happy.

Image retrieved from: https://delawarefamilytofamily.wordpress.com/tag/parent-to-parent/

It is obvious to me that, while we may have made great strides in providing support for individuals with neurodevelopmental disabilities in the 21st century, we must now also strive to provide parallel support for their families as well if we are to offer the most holistic support possible for individuals with neurodevelopmental considerations. Through this most holistic support, we will undoubtably continue to see subsequent increased positive outcomes in families that include individuals with neurodevelopmental considerations.

References

Grossman, B. R., & Magaña, S. (2016). Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course. Journal of Family Social Work, 19(4), 237-251. doi:10.1080/10522158.2016.1234272

Hohlfeld, A. S., Harty, M., & Engel, M. E. (2018). Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy. African Journal of Disability, 7. doi:10.4102/ajod.v7i0.437

Murphy, C. M., & Verden, C. E. (2012). Supporting Families of Individuals With Autism Spectrum Disorders. Journal of Positive Behavior Interventions, 15(1), 16-25. doi:10.1177/1098300712436845

Parent to Parent. (2013, September 23). Retrieved September 26, 2020, from https://delawarefamilytofamily.wordpress.com/tag/parent-to-parent/

Weaver, L. (2018, June 19). 8 Tips for managing stress for parents of special needs children. Retrieved September 27, 2020, from https://www.centralpennparent.com/2018/8-tips-for-managing-stress-for-parents-of-special-needs-children/

Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2013). Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 985-995. doi:10.1177/1362361313508024

Helping Families During Stressful Times by Jennifer Cunningham, Nursing Trainee

Alt Text: Sunset in the background with a silhouette of a woman riding a bicycle with a child on the back and a man pushing the back of the bicycle in the foreground; from Deekhanu, Vinit. (Photographer). (unk publication date). Biker family [digital image]. Retrieved from https://www.shutterstock.com/image-photo/biker-family-silhouette-father-daughter-572132662

The current COVID-19 pandemic has intensified existing stressors as well as added new layers of challenges for families caring for children with developmental delays or other special medical needs. As healthcare providers who work with these families, we have a great opportunity to support them and minimize their stressors.

Parents of children with special needs often experience stress beyond that of parents with typically developing children. Many of these families have less support, and cannot leave their children with other caregivers unless they have received special training to care for their children. This limitation may impact whether family members can work outside the home, or can find time to socialize with friends and extended family.  It is common for families to experience a strain on finances and employment, related to missed work in order to meet their child’s needs (e.g. more frequent illnesses, appointments, and specialty care).

As providers, what can we do to help?

●       Resiliency is becoming a common term and essentially means the ability to adapt well during times of stress, tragedy, threats, adversity, or trauma. During each encounter, we can help link families to resources and help them build resilience by offering a parent and/or sibling support group.

●       We also have a duty to help families navigate the complex system that healthcare has become. Families, particularly families of newly diagnosed children, are unfamiliar with what resources they will need—they don’t know yet what they don’t know. Offer support to help them find pertinent resources.

●       Be sensitive to the emotional impact of a new diagnosis on a family:  Often families are so overwhelmed by the new information that they are not immediately ready to embrace all that they will need to do to care for their child. Offer support, be patient. If you have the resources, please link the family with a care coordinator from your facility.

●       Simplify or streamline the child’s treatment to help reduce parental stress. We can intentionally collaborate with specialists, create truly integrated care plans, and coordinate medical appointments to reduce number of trips to the office and days off from work for families.

Making an effort to become aware, assessing family needs as part of our routine care, and considering the implications of the treatments and referrals we are making, are also good things to do  to help reduce stress for these families.

Additional reading:

Peer, J., & Hillman, S. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy & Practice in Intellectual Disabilities. 11(2), 92–98. https://doi-org.proxy.cc.uic.edu/10.1111/jppi.12072

Shapiro, E. (2002). Chronic illness as a family process: A social-developmental approach to promoting resilience. Journal of Clinical Psychology. 58(11), 1375–1384. https://doi-org.proxy.cc.uic.edu/10.1002/jclp.10085

Whiting, M., Nash, A., Kendall, S., & Roberts, S. (2019). Enhancing resilience and self-efficacy in the parents of children with disabilities and complex health needs. Primary Health Care Research & Development. 20, E33. doi:10.1017/S1463423619000112

https://www.exchangefamilycenter.org/exchange-family-center-blog/2017/12/14/protective-factors-meet-parenting-stress-with-parental-resilience

https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/resilience/Pages/Promoting-Resilience.aspx

Communication = Key by Jordan VanMelkebeke

Working within a school setting there are many different ways of helping aid and be an advocate for those students I work with. To be an effective school social worker there are many different ways to not only connect with those within the schools, but those outside as well, such as parents. Connecting with parents is a key factor to conducting a successful relationship in able to advocate for the students’ needs within the school. 

Building rapport is such a basic, yet very important aspect of a social workers position. Having those positive interaction between social workers and the families is essential. Especially when working with the student in a school setting, it allows for better collaboration and to work on creating that nice transition between school and home. Recently I was sitting in an IEP where the communication you could tell was so open and welcomed from the parents it made for supporting the student so much easier and effective.

Having that open line of communication and being able to pick up the phone and directly call the parent is something that the student needs throughout the day. From the parent asking how the student did that day, to the teacher letting the parent know they didn’t like a certain snack. Teachers and social workers are here to help advocate for not only the students but the family as a whole.

Sometimes when working with families it can be tough to create that open line of communication right away. Coming from my experience when a parent has one bad experience it is hard to trust again, which this totally a valid feeling. Imagine working with someone who is supposed to have your child’s best interest in mind and providing them the least restrictive environment, but they completely over look all your child’s strengths and want to keep them in a contained classroom instead. When a parent experiences someone who doesn’t want to even acknowledge what your child can do it is hard to then trust someone else who claims they’re going to do that as well.

When working with parents who unfortunately have had a bad experience in the past it is the professional’s responsibility to take those extra steps. When starting to work with a family it is critical to meet them where they are at, not where we want them to be. If they have struggled in the past make the attempt to work even harder to connect with them and truly letting them know that their concerns are being listened to and what they think is best is being taken into consideration. Communication is key for working with not only students, but with the families. This allows for the student to thrive and experience the least restrictive environment within school.

School social worker sitting with student

Picture received from: https://socialwork.uic.edu/academics/professional-educator-license-pel-school-social-worker-endorsement/

References

Why relationships are key to good social work: Innovation Unit: New solutions for thriving societies. (2020, February 10). Retrieved October 01, 2020, from https://www.innovationunit.org/thoughts/why-relationships-are-key-to-good-social-work/

Developmental disability, parenting, and stigma: A note to relevant practitioners by Chelsea Wallaert OTD OTR/L, PhD student in DHD at UIC

What is stigma?

Stigma is defined as a social construct that dictates whether an individual is considered “normal” within a given society. When individuals are stigmatized, they are often viewed as “other” and often even less human (Munger). Stigma has a large impact on children with disabilities and their families. It is important to consider whether or not health care professionals who work directly with children with disabilities and their families are doing enough to help stop the stigma.

Why does stigma need to end?

Families report that when they perceive they are experiencing stigma they adapt and change their daily routines and interactions. Some parents have reported not going to community outings or extended family gatherings due to the stigma they have experienced before (Zuckerman et al. 2018). They may not take their child to the park or the grocery store due to the looks and stares they get in addition to feeling as though they need to constantly explain or validate their child’s behavior. They report increased perceived rates of stress in the family, they perceive that their child is not getting enough support( despite having their child enrolled and engaged with appropriate supports and services at the same rate as families with decreased perceptions of stigma) and report overall feelings of loneliness and isolation (Kinnear et al. 2018; Zuckerman et al. 2018). These feelings and rates are further exacerbated when a family is also part of another stigmatized group due to other factors as well. Families who have public insurance, parents with lower education, immigrant families, non-English speaking families, and families of color report increased feelings of stigma (Zuckerman et al. 2018). Families also report stigma influencing the way they or others think about their child’s future and potential to go to college, work, get married, have children of their own (Kinnear et al. 2016). This stigma then follows the child as they age and can result in discrimination. The stigma occurs in the child’s and family’s daily lives.

How are parents combatting stigma?

Parents are fierce advocates for their children and are taking on the fight against stigma. Parents at times will actively try and push against stigma, but also will adapt themselves in the stigmatizing situation. Parents also show a mix in terms of how they perceive they need to combat stigma. For example, some ignore, some use medical deflection (use of treatment, therapies to combat the stigmatized trait). Other parents feel it is their role to educate their community about their child and disability to combat the stigma through more of a social model lens. Other families use a strategy of avoiding or ignoring the stigma altogether and adapt their life as to reduce experiencing any stigmatizing situations. While parents and children with disability experience the stigma firsthand and know just how negative the toll can be, they shouldn’t fight it alone. (Manago, Davis, & Goar 2017).

What is next?

There is much still to untangle with what may be the initial cause or root of stigma in addition to what the best way to end it is, however it is clear that stigma must be addressed within clinical practice in order to promote community engagement, quality of care, and familial joy. Healthcare professionals must play a role in combating the stigma, both directly and indirectly with the family and should make it a large priority of their practice. Consider reflecting on how you might help fight stigma.

Have you addressed stigma with the families you work with?

Is the language/approaches you use in practice leading to further perceive stigma in parents? Do you utilize more of a medical model approach or social model

Are you encouraging parents to utilize the social model to combat stigma? A medical model?

To passively address stigma? Actively?

Are we relying too heavily on parents to combat stigma of childhood disability?

How do you address stigma or talk about disability in your personal life?

What are we doing on a professional and personal level to help break the stigma surrounding disability?

How can we collectively do more to end stigma?

We can all do more to help in ending the stigma.

References

Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the

experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942-953.

Manago, B., Davis, J. L., & Goar, C. (2017). Discourse in action: Parents’ use of

medical and social models to resist disability stigma. Social Science & Medicine, 184, 169-177.

Munger, Kelly. “Stigma.” Disability in American Life: An Encyclopedia of Policies, Concepts,

and Controversies. Edited by Tamar Heller, Sarah Parker Harris, Carol Gill, and Robert

Gould, Santa Barbara, Ca: ABC-CLIO pp. 638-641.

Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Cobian, M., Macias, K., ...

& Smith, K. A. (2018). Parent perceptions of community autism spectrum disorder stigma: Measure validation and associations in a multi-site sample. Journal of Autism and Developmental Disorders, 48(9), 3199-3209.

Community Groups Stepping In by Drita Jusufi

 Being a parent of two children with different needs has been challenging throughout the years. My daughter has more needs than my son. She cannot walk or talk on her own. She is in a wheelchair and uses a Kid walker. I did receive help from the state to receive them, although any other equipment is hard to get. For instance, I wanted to get her a bike, but could not get one. I tried a toddler growing bike where I can still use the handle to push her as she rode. The bike was still too small for her.

  I went to her Physical therapist about options of bikes for her. Having a wonderful PT, she jumped into action. She already knew of a National charitable organization called The Greater Ambucs. They had a chapter in my town. She applied for my daughter to receive a bike, and they accepted her. We had lunch with the chapter where she also received the bike. She enjoyed her bike all summer long. It is because of these groups that people with disabilities can get these extra’s they may not be able to get or afford. They also build ramps too!

The Greater Ambuc’s http://www.ambucs.org/

ambucs@ambucs.org

(800)838-1845

My daughter Lola riding her bike!

Misconceptions of Romantic Relationships on the Spectrum in Media by Mia Hruska, SLP Trainee

There are oftentimes misconceptions that a person with ASD cannot or does not want to have a romantic relationship. This may come from the fact that those diagnosed with ASD tend to have difficulties in communicating and interacting with others. For example, there may be difficulty with eye contact, facial expressions, or maintaining interest and attention in a conversation (Autism Awareness Centre Inc.). However, just because there are social difficulties with ASD, does not mean that individuals with ASD are not interested in pursuing romantic relationships.

Recently, the show “Love on the Spectrum” was released on Netflix. This show goes into the lives of several individuals with varying degrees of ASD. The show clearly displays the message that individuals with ASD are interested in and are capable of pursuing romantic relationships. Although this show promotes awareness and allows for a very basic understanding of autism, there have been a variety of negative critiques. For example, Sara Luterman wrote that the show gives bad relationship advice as well as infantilizes the cast (2020). There are several instances throughout the series where the relationship advisor speaks with both the parents and her client, rather than just the client. In addition, there is an instance in the series where the crew asks an engaged autistic couple if they have “consummated” their relationship. Not only is this inappropriate, but it is ignorant. The infantilization of the cast in this series can be incredibly harmful especially towards the Self-Advocacy movement for people with disabilities.

It is abundantly clear that our TVs are in desperate need of diversity. Although “Love on the Spectrum” was perhaps well-meaning, it creates the harmful and false view that people with disabilities are child-like. Furthermore, romantic relationships among those with developmental disabilities should not be portrayed as unusual or abnormal. Future movies, television series, and more need to present those with developmental disabilities more accurately, especially in a time where the Self-Advocacy movement is incredibly important towards making progress in disability rights.

For more information on this topic, check out these articles:

https://www.autismspeaks.org/blog/10-things-know-about-dating-someone-autism

https://www.spectrumnews.org/opinion/reviews/review-love-on-the-spectrum-is-kind-but-unrepresentative/

https://autismawarenesscentre.com/romance-autism-dating-possible-people-asd/

References

Autism Awareness Centre Inc. Romance and Autism: Dating is more than possible for people with ASD. https://autismawarenesscentre.com/romance-autism-dating-possible-people-asd/

Cian O’Clery, creator. Love on the Spectrum. Northern Pictures for the ABC, 2019.

Luterman, S. (2020, August 18). Review: ‘Love on the Spectrum’ is kind, but unpresentative. Spectrum News. https://www.spectrumnews.org/opinion/reviews/review-love-on-the-spectrum-is-kind-but-unrepresentative/

Come One, Come All: Juggling Multiple Identities by Tiffany Besana, SPT

Image: A person stands on top of a ball while wearing a green blindfold and juggling four pins.

Taken from: https://cdn5.vectorstock.com/i/1000x1000/21/49/juggler-girl-cartoon-vector-10062149.jpg

Take a moment to ask yourself the question “Who am I?” What makes you you? Is it simply your race, your gender, your sexual orientation, or your disability? Chances are you’re juggling multiple at once! How tiring must that be, especially if you’re a young person exploring and balancing multiple minority identities in a world that seemingly does not value yours. How about we turn this into a world that does.

Healthy identity exploration is psychologically important, especially for adolescents from minority groups (Erikson, 1968; Umaña-Taylor et al., 2014). However, young people often encounter obstacles along their journey due to discrimination targeted at their stigmatized identity, which is especially detrimental for racial minority youth with disabilities (Holmes, 2012; Torres & Ong, 2010). Young people with disabilities are significantly more likely to experience peer victimization, especially among sexual minority males (McGee, 2014). The relationship between multiple minority identities and the barriers to healthy identity development is something that we cannot overlook. The question is: what can I do to alleviate these bruises?

When working with communities, it is important to recognize the diversity within the groups and look for opportunities to include people beyond binaries (McGee, 2014). For example, a social worker may investigate if the Gay Straight Alliance in this high school inclusive of LGBTQ youth with disabilities. Looking at the local disability community, one may wonder if it is inclusive of Asian Americans. Educators can be mindful when choosing to present a film in class, being aware of distorted, stereotypical representations evident in media and their impact on minority youth’s identity development (Besana, Katsiaficas, & Loyd, 2019). Examining and bridging these gaps in group settings encourages validation of multiple minority identities.

As rehabilitation practitioners, it can be helpful to lend young clients a helping hand in developing their complex identities. Once activity could involve having the client construct a self-narrative that is inclusive of their multiple identities. As the therapist, you would actively listen to this experience, identify themes (i.e., self-worth, affirmation of disability), and help your client develop positive outlooks based on their story (Dunn & Burcaw, 2013; Nettles & Balter, 2011). Together, it is possible to support healthy identity formation and to make the everlasting juggle of identities something that is a bit more manageable and fulfilling.

References:

1.     Besana, T., Katsiaficas D., & Loyd, A. B. (2019). Asian American Media Representation: A Film Analysis and Implications for Identity Development. Research in Human Development, 16:3-4, 201-225, DOI: 10.1080/15427609.2020.1711680

2.     Dunn, D. S., & Burcaw, S. (2013). Disability identity: Exploring narrative accounts of disability. Rehabilitation Psychology, 58(2), 148-157. doi:http://dx.doi.org.proxy.cc.uic.edu/10.1037/a0031691

3.     Erikson, E. H. (1968). Identity: Youth and crisis. New York, NY: W. W. Norton.

4.     Holmes, D. (2012). "Why can’t we just simply treat people’s problems, not their race (or physical disability, or sexual orientation)?!": A psychodynamic approach to the therapeutic relevance of multiple minority identities. In Multiple minority identities applications for practice, research, and training /. Springer Pub Co,. https://doi.org/info:doi/

5.     McGee, M. G. (2014). Lost in the margins? intersections between disability and other nondominant statuses with regard to peer victimization. Journal of School Violence, 13(4), 396-421. doi:http://dx.doi.org.proxy.cc.uic.edu/10.1080/15388220.2014.894914

6.     Nettles, R., & Balter, R. (2011). Multiple minority identities : Applications for practice, research, and training. ProQuest Ebook Central https://ebookcentral-proquest-com.proxy.cc.uic.edu

7.     Torres, L. & Ong, A. D. (2010). A daily diary investigation of Latino ethnic identity, discrimination, and depression. Cultural Diversity & Ethnic Minority Psychology, 16, 561-568. doi:10.1037/a0020652

8.     Umaña-Taylor, A. J., Quintana, S. M., Lee, R. M., Cross, W. E., Jr., Rivas-Drake, D., Schwatz, S. J. & Ethic and Racial Identity in the 21st Century Study Group. (2014). Ethnic and racial identity revisited: An integrated conceptualization. Child Development, 85, 21-39. doi:10.1111/cdev.12196