Bonus "Kids Making Strides"

HELPING PARENTS FIND

OCCUPATIONAL BALANCE

AshleyLon,M.S.,OTR/L Occupational Therapist

TLC-TheTreatmentandLearningCenters

As Pediatric Occupational Therapists, our primary role is to support your child in the successful, meaningful, and independent participation in their daily occupations. This can include anything from getting dressed in the morning, to going to the bathroom, riding their bike, handwriting legibly, playing with peers while regulating emotions, or being able to attend to the activities during their school day. Since occupational therapy covers such a wide range of activities, people often do not realize that we not only help support the children we work with, but their parents and siblings as well.

Becoming a parent in general can significantly impact anyone’s ability to maintain a healthy balance between the daily occupations you must do and

the ones you want to do. I can speak from personal experience when I say that Parents of Children with Disabilities (PCWDs) often experience even more difficulty establishing this balance to prevent caregiver burnout and ultimately lead a joyful, fulfilled life.

While I am not a parent myself, I grew up watching my parents do their very best to raise five children, one of which had severe physical and cognitive disabilities. My younger brother had a rare genetic disorder that worsened over time, leaving him more and more reliant on my parents for the completion of simple, daily tasks such as eating, sleeping, walking, changing his diapers, etc. This went on for twenty-two years of his life, as well as my parents’ lives.

As I grew up with him, I realized just how much more time, energy, and resilience it took for my parents to care for my brother, when compared to the rest of my siblings.

At the end of the day, if my parents needed to step away from us for a few minutes to answer the phone or use the restroom, they could do so knowing we would be safe. On the contrary, my brother could not be left alone for more than a minute at a time, without the possibility of him grabbing an object and choking on it, tripping and falling during play, sleeping without rolling off the bed; the list of possibilities went on and on. As I enter year 5 of my career as a pediatric occupational therapist, it

is becoming more apparent than ever that the parents I work with each week share this experience of giving every bit of time, patience, kindness, and understanding to their children day in and day out, leaving reportedly little to no time for themselves. It is not only my job, but also my passion, to be able to emphasize the importance of establishing what we in “OT land” refer to as Occupational Balance, in the lives of parents raising children with increased needs.

Occupational Balance (OB) is, in short, the lived experience of “filling your own cup before you pour into others” or “ensuring your oxygen mask is secured before you attempt to help others put their mask on”. The leading experts on OB initially described it as “a simple idea of balancing work, play, rest, and sleep to promote health…but it later evolved as a multidimensional concept characterizing a satisfactory amount and variety of occupations in daily life” (Wagman et al., 2012). Further, “variety and balance are necessary among those occupations, in which people work with others versus alone; obligatory versus voluntary occupations; energy-giving versus energy-consuming occupations; restful versus strenuous occupations” (Wilcock et al., 1997); occupations performed to satisfy and care for self, versus others; and challenging versus relaxing” (Wilcock, 2006).

Occupational Balance has been found to be challenging to achieve for parents of children, with or without increased needs,

simply because parents recognize that in the beginning stages of life, they are essentially their children’s entire world, and are responsible for shaping the way in which their children perceive and participate within that world. Although all parents share this lived experience, there are additional demands that parents of children with disabilities (PCWD) must face day-to-day. Moreover, “achieving OB is more challenging for PCWD because of the higher demands of the disability-related caregiving role” (McGuire et al., 2004). When comparing parents of typically developing children (PTDC) with PCWD on time used to care for others rather than themselves, it was reported that “PCWD have approximately 1.5 hours less per day when compared with their PTDC counterparts” (McGuire et al., 2004). From experience working with families of children with disabilities, it is clearly reflected in their daily routines that the demand is greater than those with typically

developing children. For example, if they go to a playground, a birthday party, or the local indoor trampoline park, a parent of child with disabilities has to consider if their child has a meltdown due to sensory overload, if they have a behavioral tantrum due to difficulty with emotional regulation, if their child elopes and can’t be found due to difficulties with impulse control, if their child becomes hurt, upset, or dysregulated and is not able to verbalize that they need help due to delays with language processing, if their child has an accident due to delays with toileting independently, if they require increased physical support to engage in play due to delays in motor planning, and the list goes on. In addition, it takes longer on average for some children with increased needs to transition in and out of an environment, so what may be a 3-5 minute transition from school to the car for a PTDC could look like a 1020 minutes transition that requires visual

timers, verbal cues, etc. for a PCWD. These small variables become second nature for PCWD to consider each day, but still demand increased time and energy to juggle, even for the most prepared parent.

It is easy for one to conclude that these increased variables could eventually have an impact on a parent’s health and wellbeing over time. Studies show that being a parent in general to a child, neurotypical or neurodivergent, can lead to the increased experience of occupational imbalance.

“Parents caring for children with disabilities (PCWD) have unique challenges that affect their occupational performance and well-being even more so and therefore, require increased engagement in occupations of their own. On average, they are at risk of experiencing “chronic stress, depression, and burnout due to caregiving demands” (Hartling et al., 2014; Hung et al., 2012; Scherer et al., 2019) at a higher rate than PTDC. If unable to establish meaningful and effective coping strategies, they are at risk for physical and

mental health issues and impaired family dynamics (Miodrag & Hodapp, 2010).” However, with good occupational balance, they can decrease the likelihood of caregiver burnout and other healthrelated risks, both mental and physical.

With this said, it is important to emphasize that there are resources for support. More specifically, “the results of a capstone project suggest that occupational therapy plays a vital role in promoting the health and well-being of parents caring for children with disabilities. Occupational therapists can help parents manage physical and mental health, while also promoting cohesion in the home environments, leading to better wellbeing for the children and their families” (Bass & Baker, 2017).

While your child’s current occupational therapist is a great resource for how to improve your occupational balance, there are immediate steps that you can take on your own to improve your occupational balance today, including:

STEPS TO IMPROVE YOUR OCCUPATIONAL BALANCE TODAY

Dedicating at least 1 hour each week to doing something for yourself, by yourself.

One hour a week may not seem like much but once you show yourself that you can be consistent with it, you can slowly find ways to increase this amount of personal time slowly. However, even 1 hour to yourself seems like an impossible feat, so focus on taking small steps and build up from there.

Make time for your own inner child.

Stop and think about what your favorite show was as a child, what topic or area of interest you used to be in love with, whether it be dinosaurs, outer space, toy trains, dolls, etc. Explore ways to introduce these topics back into your dayto-day life. Perhaps you could watch an episode of an old series with your child and reminisce. Sharing your own passions with your child and a calm, meaningful, and connection-based manner is also referred to co-regulation.

Accept help from others. Often when people offer help watching or caring for you or your children so you can have time away, we see it as a kind gesture, but never actually take them up on their offer. Try out releasing control and accepting help and see how it feels. .

Diversify your occupations. It is easy to fall into the same routine week-to-week but what we do not always realize is that we are unconsciously creating habits. Whether it is zoning out by scrolling on your phone or binging a tv series, which can certainly have an important place in our routine; having only those options available to pick from for your “me” time could lead to increased mindlessness and stress over time. Try exploring other leisure or play-based occupations that enhance mindfulness and feelings of being present and away of the moment

Prioritize and integrate slow/mindful moments into your routine.

Sip tea instead of coffee and make an event out of brewing your favorite blend of herbs and spices. Make it a morning ritual. Take a bath instead of a shower (add Epsom Salt, music, and a candle to your bath time routine, if it feels right for you).

End your workout 5 minutes early and use that time to listen to a mindfulness meditation or simply just lay and relax.

Get comfortable saying “no”. You’ve heard it before, “just say no!”. Often, we are so used to showing up for others, so used

to going, going, going until all the time is gone that the next thing you know our heads are hitting the pillow only to wake up and do it all again. Practice stopping and thinking before you say “yes” to those plans with friends or family and consider, “do I actually want to go?”, “do I have the energetic capacity to go?”, “will my cup feel more full when I come back from that event?”, if the answer is “no” to any of those, trying simply saying “no thanks, we’ll catch you next time” and spend that time in quiet, or simply doing what you want to do Give yourself permission to say no to things simply because you do not want to or have the energy to. Your time and energy are precious, and you deserve to make choices that serve you, so that later on you can better serve your children.

Reach out.

Ask your child’s health care providers (i.e., pediatricians, OTs, Speech therapists, counselors) if they have recommendations for how to help you with caretaker burnout, if there are parent support groups they provide, etc. It is normal and healthy to acknowledge when you are feeling burnt out and would like some support. It is what we’re here for!

If you are a parent, you already know that having a child comes with new levels of love, growth, patience, grace, and service toward others.

What does not get talked about as much is the necessary increase in all of these toward oneself as well, once you make this transition from being your own caretaker, to becoming someone else’s. The transition between being an adult without children to becoming a parent has shown to have a significant impact on the parent’s occupational balance, often leaving less time for the parent to fill up their own cup before having to fill their child’s.

Moreover, having a child with increased needs or a child with disabilities has been shown to impact one’s occupational balance more so than having a typically developing child. This only emphasizes the importance of improved occupational balance for PCWD even more. If you have not heard it today, or ever, it is important for you to know you deserve to have your cup filled and some may even argue that you require it, to be the person and parent that both you and your family deserve. If you would like to learn more about what occupational balance is and how you can improve your own, reach out to your child’s pediatric occupational therapist or look up resources online.

FEEDING IN OCCUPATIONAL THERAPY

KathrynMcGinnis,MS,OTR/L,CPRCS Occupational Therapist TLC-TheTreatmentandLearningCenters

Occupational Therapy addresses each individual’s activities of daily living (ADL), which are the activities required within one’s day to take care of oneself. Examples of ADL include bathing, toileting, personal hygiene, feeding/eating, mobility, and dressing. Out of these activities listed, feeding and eating is a vital part of development for children, however, can present with various barriers. Feeding difficulties are seen with a prevalence of 25% in typically developing children and 90% in children with disability (Estrem et al., 2018; Maynard et al., 2020).

Feeding difficulties may present as; avoidance of food groups (fruits, vegetables), avoidance of certain textures, colors, and smells, avoidance of feeding environment (table, kitchen), hyper fixation of certain brands or foods, resistance of engagement with new foods, emotional outburst with presentation of non-preferred foods (crying, screaming), or physical response (throwing foods, gagging, leaving the table).

Occupational Therapy can assist with providing a sensory-based approach to decrease the emotional and physical responses to non-preferred stimuli (food).

Feeding therapy with a sensory-based approach focuses on a child’s strengths to improve engagement with nonpreferred foods to progress through each sensory system. Tolerance to non-preferred (or new) foods begins with visual tolerance, beginning within the same room progressing to onto the table and then their plate. The next sensory system is olfactory, tolerance to new or different smells. Tactile (touch) progresses from interacting with their fingers, working up their arms to their cheeks and lips. Gustatory starts with licking new foods, improving tolerance to the flavor or taste without the introduction of the texture of the food. Lastly, biting combines all systems to involve the appearance, smell, texture, and taste of the food. Research has shown that each step in the sensory hierarchy may need 20 to 30 exposures to progress to the next stage. (Please refer to graphic; Modified from original version by Kelly Glynn, MA, CCC-SLP., Marshall, J and Podrill, P. (2011). Focusing on the child’s strengths during each of these stages includes utilizing preferred, easily accessible, plateware and utensils and capitalizing of the strengths (abilities) they can perform at that time. For example, finger feeding instead of utensil use for a child presenting with additional motor challenges.

In each stage of the Feeding Therapy process mentioned in the previous page, the most important aspect is creating a no-pressure, fun, and positive environment. Through occupational therapy, we create this environment through play utilizing shape cutters to make the food into different shapes, feeding puppets to interact with the food with no pressure to consume, and through individualized imaginary play. Examples of this may include using toy dinosaurs to stomp through a mashed potato terrain or using fruit juice to paint on a placemat.

Turning feeding into a guided play environment increases the child’s engagement and exploration of the task at hand, in this case the new or non-preferred food. Guided play is explained by David Klahr at Carnegie Mellon University as, “Guided play combines the best elements of free play and direct instruction: child autonomy and adult expertise. It provides an optimal medium for delivering educational content in ways that are enjoyable and that allow for genuine child agency, while constraining children’s activities to facilitate learning.”

Additionally, and importantly, the guided play environment can decrease dysregulation, and occasional anxiety, associated with mealtime or the context of feeding. Common signs of dysregulation may include but are not limited to; widening of the eyes, quickened, shortened breath, change in energy level (suddenly quiet, avoidant or loud, energetic), extension of the back and arms, visible emotion disturbance (crying, wincing, screaming), and/or removal of themselves from the environment. At any sign of dysregulation, it is important to remove the presented food/stimuli, and return to a preferred, positive food/stimuli engagement for this child. Continued engagement with a food when dysregulation symptoms are present has been shown to halt progress, potentially cause a regression, and increase the aversion to the food texture, food group, or other sensory association.

If you notice any of the above signs of dysregulation during mealtime with your child or notice an increasing or consistent aversion to new or non-preferred foods, an Occupational Therapist can assist with evaluating and providing individualized recommendations to improve your child’s feeding and eating performance.

A NEURODIVERSE VIEW OF STUTTERING

JosephNicol,M.A.,CCC-SLP Speech-Language Pathologist TLC-TheTreatmentandLearningCenters

What comes to mind when you think of stuttering and what stuttering treatment might look like? Many people believe that the goal of speech-language therapy for people who stutter is to reduce the severity and frequency of speech interruptions to achieve smoother, more fluent speech. After all, most depictions of stuttering in movies and television show people who are nervous, shy, or even unintelligent. However, this is a false and harmful stereotype; stuttering is a neurodevelopmental difference that solely affects a person’s speech, not their intellect or personality.

This is not to downplay the impact of stuttering on the way a person ultimately feels, thinks, and behaves. From a very young age, the negative social consequences endured by people who stutter – looks of confusion or disapproval, unsolicited advice about how to improve their speech, exclusion from conversations, etc. – lead individuals to spend an inordinate amount of time attempting to hide their stutter by avoiding certain sounds or words, social situations, or speaking altogether. Some types of therapy, such as fluency shaping or using delayed auditory feedback, may suppress stuttering in the short term, but lose their efficacy with age and often directly or indirectly perpetuate the negative feelings and thoughts associated with stuttering. Thus, the core issue of stuttering becomes not the interruption in speech, but the fear of stuttering and ensuing avoidance patterns that keep people who stutter from communicating in a natural, comfortable, and joyful way.

In line with our overall mission and therapeutic philosophy, fluency therapy at TLC is proudly focused on affirming that stuttering is a neurodevelopmental difference and not something that needs to be “fixed.” Our therapists help clients achieve comfortable, forward-moving speech that is natural for that individual, and collaborate on building a plan of care that meets their unique social, academic, and/or professional goals. Through increased awareness and representation in the media, improved education for caregivers and professionals, and a commitment to advocacy and allyship from the public, we can move toward a neurodiverse view of stuttering: a unique human difference to be accepted, valued, and celebrated as any other.