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

Disability Services: How Religious Programming Impacts Differently-Abled People by Moriel Daniel

In high school, I started volunteering with an organization which paired high school or middle school volunteers with children with special needs. This organization is known as the Friendship Circle, which has chapters nationwide and began in the Midwest. Friendship Circle (FC) is organized through Chabad, a religious Jewish foundation. As such, many of the families involved in the Friendship Circle, as volunteers or participants, are Jewish. Furthermore, the activities and some programming incorporate Jewish holidays & rituals, such as the Sabbath or Passover. In keeping with the intent of the program, activities were modified for each individual’s need. While volunteering at Friendship Circle, I had come to learn of a family that was a member of my synagogue. Their eldest daughter was a participant in Friendship Circle, although I had never seen her at synagogue programming or services.

One of my closest family friends had a similar situation. The younger daughter, six years older than me, is on the autism spectrum. We had gone to the same school and our families attended the synagogue, leading me to believe I would see her at services. However, this was not always the case, which made me curious about how synagogue differed from school.

Furthermore, Judaism involves a number of lifecycle events. These include a circumcision or baby naming (relatively soon after birth), along with a bar or bat mitzvah, typically between 12 and 13 years of age. While Friendship Circle had programs for those between 3 and 21 years, there was minimal programming for these momentous life events.

After high school, I periodically continued volunteering with FC. This year, during winter break, I was once again able to volunteer with them, this time in Illinois. The questions I had previously about Judaism and its accommodation & practice remained. Even more, my synagogue’s practices in New Jersey had changed over the years. A family had been bringing their son (with developmental disabilities) weekly to services. Another individual with intellectual disabilities had also started coming to services weekly independently, and a sticker with Greater MetroWest ABLE appeared on the building’s doors.

The culmination of these experiences led me to examine religious practices and how they may be modified for different circumstances. For example, a boy in the NICU can be circumcised after the initial 8 days, at a point only when a physician deems it safe for the baby. However, the bar/bat mitzvah event brings a number of different challenges. It is customary for the child to lead prayers for the congregation and read from the bible, all in a different language. In Christianity, this event may be similar to a confirmation.

This encouraged me to think of and learn about how lifecycle events and daily rituals are to be accommodated for all, as is done through Universal Design for Learning. Sitting in a service that is typically quiet with an individual who stims can be uncomfortable. While steps should be taken for acceptance of some noise, spaces should also be constructed where individuals can participate in their environment.

Here are some other basic suggestions to support those with disabilities:

-          Ensure wheelchair accessible

-          Adult changing tables

-          Large print and braille materials

-          Sign language interpretation

-          Sensory/quiet room

-          Personnel and material resources for lifecycle events

One tenant/foundation of many religions is the recognition that individuals connect to their higher power, in their own way. This does not differ for those with disabilities. For some, this connection takes place through prayer; others through movement, art or any other activity. While some religions dictate practices take a certain form, they recognize a time and place.

This allows for programming outside of the traditional worship, such as art, running, bicycling or volunteering. Some of these activities already take place in religious organizations and need only an outreach component to become more inclusive.

For more information about religious inclusion:

JCFS Chicago

Archdiocese of Chicago

Evangelical Lutheran

Joni and Friends

Video: Praying with Lior on Vimeo

Greater MetroWest ABLE

Why Assistive Technology? By Tedros Markos

How well do you reminisce your first hands-on experience with modern computers? I came from Eritrea, a country along the Red Sea coastline in East Africa, where possession of a computer for the majority is still a pie in the sky. More than 90 percent of the population, particularly people with disability, do not own or have access to computers given their disadvantaged background.

Back in 1997, I decided to register for a typing skills training. There was a wonderful teacher at the school, who patiently taught me how to use the manual paper roller, the carriage return, the keyboard and what not. She would sit next to me and start reading from the “How to” material. Ready, get set, roll! Keyboard clicks and clink-clanks from Olympia and Olivetti typewriters reign in the room. No sooner than I joined a university in 1999 did I begin tinkering with DOS-based computers. Microsoft ® Windows ® 97 was a great leap.

The advent of information science following World War II has resulted in multi-dimensional dynamism launching a new era of information technology. With the ever expanding infotainment options, the dawning of the era of information technology together with the emergence of assistive technology heralded mankind, especially for people with disabilities, a new age in electronics, independent living, education and employment as well.

Assistive technology, a term which came common into use in 1970’s, is any item, piece of equipment or system, comprising specialized instructional materials, services and strategies that is used to increase, maintain, or improve how a person performs some task of daily living. Large print for students with low vision is a simple example of specialized instructional material of assistive technology.

Sec. 300.5 of IDEA and Title III of the Americans with Disabilities Act (ADA) stipulate that schools and employers provide with appropriately befitting accessible technology to students and employees with disabilities to ensure access to information and productivity. The supply of accessible technology both at school and workplace remains to be a fundamental question in many countries. Unless protected by law for people with disability as of right, the supply of assistive technology will, in many places such as Eritrea, continue to be regarded as a luxury.

There are a number of countries (mostly developing ones) across the globe that have adopted and ratified proclamations or acts for persons with disability. The overall import of the laws for persons with disabilities is prevention of discrimination against people with disabilities resulting from or arising out of their disability by making the code of conduct of institutions and associations comply therewith and to provide, so far as possible, assistive, adaptive and rehabilitative appliances and other equipment by setting standards of technical services and accommodation for institutions.

Furthermore, all countries with laws of disability do agree, at least, in principle, that no employer shall discriminate against any person with disability in relation to: the advertisement of employment, or, the recruitment for employment; or, the creation, classification or abolition of jobs or posts; or, the determination or allocation of wages, salaries, pensions, accommodation, leave or other such benefits, or, the choice of persons for jobs or posts, training, advancement, apprenticeships, transfer or, promotion; or, the provision of facilities related to or connected with employment.

On March 4, 1994, the United Nation’s General Assembly adopted “The Standard Rules on the Equalization of Opportunities for Persons with Disabilities”, comprising 22 articles which expound that all persons have the same rights and duties. Although the Rules are not legally binding, they can become international customary rules when they are applied by the majority of member-States.

We have heard and read time and again that every person is equal under the law. When an employer recruits an employee with disability, for instance, the employer should bear in mind to provide with the necessary tools, instruments and implements. Should an employer hire an able-bodied and a person with disability and if they fail to provide the latter with the appropriate assistive technology, the whole point of equality of opportunity will be defeated. For by failing to provide the same, the person with disability is in effect being discriminated against. This is so because people with disability will not make a living in the absence of equality of opportunities, and thus, their welfare will not be guaranteed.

Education by definition is a lifelong learning process. By ensuring that individuals have the intellectual abilities of reasoning and critical thinking, and by helping them construct a framework for learning, colleges and universities provide the foundation for continued growth throughout their careers, as well as in their roles as informed citizens and members of communities.

Contrary to the enthusiasm they possess for work, employees with disabilities have been encountering challenges that emanate from lack of well-disposed initiative on the part of employers to fulfill their demands, especially, with materials that are of prime necessity to their work. However hard they endeavor, employees with disabilities are still under the mercy of grueling dependency on others, always anticipating for willful readiness of their respective supervisors.

Most employers are inclined to the attitude that people with disabilities are less productive and deserve to get minimum wages. Employees with disabilities have in most cases been trying to primarily accomplish the double assignment they shoulder when they first get recruited: to competently overcome the negativities that often emanate from erroneous perception on the one hand, being a model, to pave a way for other people with disabilities to follow suit on the other.

The right to assistive technology for people with disabilities needs to be enshrined in law everywhere and translated into practice. Assistive technology has not only helped a number of us achieve great independence in education or at workplaces, but our good command of computers has morphed work relationships into the best friendships, thanks to assistive technology. More importantly, assistive technology is not an aid but a means of living for people with disability.

Recognizing the Role of Black Fathers in Parenting a Child with a Disability

Falsely stereotyped messages from mass media influence global views on Black parenthood. Such messages inform our perspectives and shape the foundation of American society. Research and policy are often informed by inaccurate assumptions that have proven to be detrimental to the image of the Black father.

There is a general notion that Black fathers are absent from the home and negligent to their children’s needs. This notion is deeply rooted in an oppressive ideology that most significantly impacts those on the margin, namely Black fathers from low-income, low-educated, urban backgrounds. Further, a lack of critical thinking and reflection blinds us to the pervasive implications of poverty, institutionalized racism, and other forms of oppression that shape the experiences of many.

Black fathers are present, and they have qualitatively different experiences that are valuable and provide great insight into the strengths of the Black family. When considering the complex needs of children with disabilities, including Black fathers in the conversation recognizes their parenting value. Recent research highlights the contributions Black fathers make to provide unique social, financial, and emotional support that further encourages their child to receive necessary services and resources (Bignall, Bignall, Vaughn, &Unaka, 2018; Evans, Feit, & Trent, 2016).  It is time to re-form the narrative and highlight the strength and success of Black fathers. Both resident and non-custodial Black fathers are involved in their children’s lives, and their experiences are worthy of further consideration.

Brandie Bentley, MSW

School of Social Work

University of Illinois at Urbana- Champaign

References

Bignall, O. N. R., Bignall, W. J. R., Vaughn, L. M., & Unaka, N. I. (2018). Fathers Know Best: Inner-City African American Fathers’ Perceptions Regarding Their Involvement in the Pediatric Medical Home. Journal of racial and ethnic health disparities, 5(3), 617-622.

Evans, D. L., Feit, M. D., & Trent, T. (2016). African American parents and attitudes about child disability and early intervention services. Journal of Social Service Research, 42(1), 96-112.

COVID-19: How the Disability Community Feels the Impact by Emily Hartwig

As I am writing this March 20th, 2020, all any one can think about is the COVID-19 crisis. All of America is stuck in their home, and everyone is grieving and scared in their own way. However, there is a community of individuals who are especially worried about their health and wellbeing in these times: the disability community.

As we know, individuals with chronic health conditions are more at risk for serious adverse effects. Many individuals with disabilities have these co-occurring medical conditions that put them at risk from the beginning. In addition, it can be hard for many to follow recommendations such as hand washing for those who have less use of their hands or are less able to operate sinks, or concentrate for the whole 20 second to do a thorough enough job. Individuals with intellectual disabilities may not understand social distancing.

Many individuals with disabilities are dependent on other people to complete daily activities. Caregivers are in a tough situation in which public health agencies are advising them to stay home;  however,  another individual depends on their close contact and assistance to live. Parents who rely on school services for care of their children with disabilities no longer have this as an option. These kids no longer have access to therapy, or access to an education with teachers who are specially trained.

Individuals with disabilities face every-day discrimination that puts them at risk during rationing. Those deemed more likely to live and thrive in the community may be chosen to receive ventilators. Individuals with disabilities fear that they will be passed over in favor of someone more able bodied. Andrew Purlang writes a great post on Forbes going into more detail on what I summarized above, and I would strongly recommend reading the full post here: https://www.forbes.com/sites/andrewpulrang/2020/03/19/updates-on-coronavirus-and-the-disabled-community/#367e031a187a.

The Arc is fighting for the disability community through Congress and has made strides to include the unique needs of this community in the emergency relief bill. They are advocating for specific funding for the supports of individuals with disabilities, as well as access to a 90-day supply of necessary medications and refills. More about the efforts of The Arc can be found here: https://thearc.org/coronavirus-relief-bill-the-arc-fights-for-disability-community/ .

The Sensory-Processing and Toileting Relationship by Elizabeth Mooney

We all have different sensory profiles. Maybe you feel energized when the sun is shining, relaxed when you chew gum, stressed in loud places, or calm when given a tight hug. These preferences have an impact on the kinds of activities and experiences we seek out or avoid every day. While 69-90% of children with Autism Spectrum Disorder (ASD) experience sensory processing challenges, 5-16% of “neurotypical” children do as well. The evidence suggests that in young children, this is related to problems with toileting.

What sensory characteristics of toileting could be uncomfortable?

·       The temperature, texture, or shape of the toilet seat

·       The sound or splash of flushing

·       The feeling of urinating or defecating

·       The smell

·       The sound or feeling of hand dryers

·       The lighting

·       The sound and feeling of the sink water

·       The feeling of wiping

Overall, the bathroom can be a sensory-overloading place for anybody, child or adult! It’s no surprise that 9-29% of elementary-age children experience problems with toileting.

What problems with toileting are common for these children?

·       Constipation  

·       Toileting refusal

·       Abdominal pain  

·       Fecal incontinence

Why does it matter?

These challenges primarily lead to a delay in potty-training, but it’s important to also consider how it’s impacting the rest of the child’s life. Does the abdominal pain or possible fear of defecating impact their play, social participation, sleep, or learning? Most likely, it’s all connected!

So, what do we do?

All professionals who work with children should recognize that anyone can experience challenges with sensory processing. Problems with toileting may not always be due to behavioral, cognitive, or underlying gastrointestinal concerns, so refer to an occupational therapist for evaluation if this sounds like a child you know!

For suggestions on how to modify the environment or tasks involved in toileting, check out this blog post:

https://www.missjaimeot.com/toileting-sensory/#sensory_processing_2

References

Ahn, R. R., Miller, L. J., Milberger, S., & McIntosh, D. N. (2004). Prevalence of parents’

              perceptions of sensory processing disorders among kindergarten children. American         Journal of Occupational Therapy, 58(3), 287–93. 

Bakker, M., Boer, F., Benninga, M., Koelman, J., & Tijssen, M. (2010). Increased auditory

              startle reflex in children with functional abdominal pain. The Journal of Pediatrics, 156         (2), 285-291.

Baranek, G. T., Fabian, D. J., Poe, M. D., Stone, W. L., & Watson, L. R. (2006). Sensory

              experiences questionnaire: Discriminating sensory features in young children with    autism, developmental delays, and typical development. Journal of Child Psychology and            Psychiatry, 47(6), 591–601. 

Beaudry-Bellefeuille, I. (2018). Examining the defecation habits of young children from a

              sensory perspective (Unpublished doctoral dissertation). University of Newcastle,          Callaghan, Australia.

Beaudry-Bellefeuille, I., & Lane, S. J. (2017). Examining sensory overresponsiveness in

              preschool children with retentive fecal incontinence. American Journal of Occupational      Therapy, 71(5), 7105220020p1-7105220020p8. 

Beaudry-Bellefeuille, I., Schaaf, R. C., & Polo, E. R. (2013). Occupational therapy based on           Ayres sensory integration in the treatment of retentive fecal incontinence in a 3-year-            old boy (Brief Report). AJOT: American Journal of Occupational Therapy, 67(5), 601-606.

Ben-Sasson, A., Carter, A. S., & Briggs-Gowan, M. J. (2009). Sensory over-responsivity in     elementary school: Prevalence and social-emotional correlates. Journal of Abnormal    Child Psychology, 37(5), 705–716. 

Boronat, A. C., Ferreira-Maia, A. P., Matijasevich, A., & Wang, Y. (2017). Epidemiology of           functional gastrointestinal disorders in children and adolescents: A systematic review.          World Journal of Gastroenterology, 23(21), 3915–3927.

Falat, J., Jaekel, M., Mooney, E., Wolpow-Gindi, M. (2019). Sensory processing difficulties and

              toileting challenges: Is there an association? Unpublished manuscript, University of        Illinois at Chicago.

Leekam, Susan R., Carmen Nieto, Sarah J. Libby, Lorna Wing, & Judith Gould (2007). Describing the sensory abnormalities of children and adults with autism. Journal of               Autism and Developmental Disorders, 37(5), 894–910. https://doi.org/10.1007/s10803-              006-0218-7.

Little, L. M., Benton, K., Manuel-Rubio, M., Saps, M., & Fishbein, M. (2019). Contribution of             sensory processing to chronic constipation in preschool children. The Journal of     Pediatrics, 210, 141–145. https://doi.org/10.1016/j.jpeds.2019.03.020

Mazurek, M. O., Keefer, A., Shui, A., & Vasa, R. A. (2014). One-year course and predictors of          abdominal pain in children with autism spectrum disorders: The role of anxiety and sensory over-responsivity. Research in Autism Spectrum Disorders, 8(11), 1508–1515.   https://doi.org/10.1016/j.rasd.2014.07.018

Spencer, J. (n.d.). Toileting and sensory processing. Retrieved from               https://www.missjaimeot.com/toileting-sensory/#sensory_processing

Disability Community on UIUC Campus by RaeAnne Lindsay

When I was looking at different college campuses, I quickly learned that I just could not go anywhere because of my use of a powerchair. Colleges were either disability friendly or just could not meet my needs to have a “regular” college experience. I had always been told about how accessible and friendly the University of Illinois Urbana-Champaign (UIUC) campus was, but I never wanted to be a part of that University.

Living around a campus town, everyone just assumes that you will go to that University because why not. I never wanted that because I was not a big fan of the University and I wanted to get out to see the other parts of our nation, until I took a tour of the Beckwith floor and the UIUC Disability Resources & Educational Services (DRES).

Taking the tour allowed me to see how accessible and friendly the campus was towards an individual with a disability. After meeting others and talking to those who would be assisting me with services, I knew that this campus would be the best fit for me.

This campus allowed me to learn more about myself and who I wanted to be. I met so many other individuals with disabilities who could understand what it was like being a college student with a disability. I found the community that I had not realized that I needed. It was nice to finally have others who understood what my life was like and who could give me advice when I needed it. I began to find my voice and work with the University on what needed to be fixed around campus to make it easier for those of us who had a disability because of the rich disability history that is rooted on this campus.

UIUC has such a rich disability history. Dr. Tim Nugent did so much work on accessibility with getting the WWII disabled veterans to be allowed to come to school here at UIUC and leading the way to making some parts of the Americans with Disability Act (ADA). Without him and those all over the nation who fought for the ADA, I would not be where I am today. Thank you, from the bottom of my heart for fighting for those changes. Thank you, for showing me how important it is to use my voice to make changes. Thank you, for letting me be the person that I am today and allowing me to meet so many others on this campus who have assisted in shaping me life. Our disability community is because of all the work that was done before the ADA and you fighting for us (even though you did not know us.)

Oh, and HAPPY 30TH BIRTHDAY ADA (July, 26!)

Autism Research in Low-Resource Settings by James Lee

From the literature, we understand that Autism Spectrum Disorder (ASD) affects many people not just in the United States, but across the globe (Elsabbagh et al. 2012); however, the majority of ASD studies come from the west. We also know that more research leads to better policies and practices; thus, there is a dire need for conducting research in the “other parts” of the world. As a doctoral student in special education and a LEND trainee, my primary research focuses on training and coaching parents of children with ASD in response to the low-level of resources in many low-resource settings (LRS), particularly developing countries around the world. Characteristics of these LRS include: (a) classification of low- to middle-income countries; (b) low level of availability of services with evidence base; (c) evidence of stigmatization of disabilities in the country; (d) parents' high levels of burden, including financial burdens for treatment; and (e) limited efforts of dissemination of treatment in families’ native languages (see Lee & Meadan, 2020). 

It has been a challenging, yet exciting journey to have conducted ASD-related research in these LRS. My most recent experience in an LRS was in Ulaanbaatar, Mongolia, where I conducted a qualitative study with 30 caregivers of children with ASD and 15 professionals. The purpose of the study was to gain an understanding of the perceptions of these stakeholders, what they perceive as barriers, needs, and strategies to overcome some of the challenges associated with raising, educating, or treating a child with ASD in an LRS. Most parents reported severe, aggravated hardships related to raising their children with ASD, in terms of financial, emotional, and systemic barriers. They reported experiencing social isolation and rejection due to stigma of developmental disability that stems from cultural and religious reasons. Various professionals, including doctors, professors of special education, both general and special education teachers, and international development agency workers shared similar stories – the hardships, barriers, and needs.

Although many stakeholders reported that there was a dire need to address the low-level of resources, no one seemed to have an answer for this huge problem. It became clear to me that we must tackle the issue of autism treatment in LRS in the same fashion as we do with many other global issues, such as famine, poverty, resettlement. We must tackle these issues with research and practice across different levels. For example, medical professionals may engage in making diagnosis of ASD and other neurodevelopmental disabilities accessible for people who live in LRS by translating and validating the diagnostic and assessment materials in different languages and cultures. Simultaneously, there should be efforts to train and coach local mental health workers so that they can carry out the diagnostics with fidelity. Similarly, education and therapeutic professionals may propose to translate and validate evidence-based practices in that particular culture and language.

For example, Rahman et al., (2016) conducted a study in two different sites of India and Pakistan with an intervention model (parent-mediated intervention for children with ASD) that was already validated in England (Green et al., 2010). They found that the children in intervention group in both sites improved their communication. Moreover, their findings indicated that interventions that were already developed and validated in a higher-income country can generalize onto other LRS with different cultural and linguistic situations. Their study, among others, demonstrates that there is no need to reinvent the wheel, just adapt the wheels to fit the individual situations.