Supporting Persistence in Children with Developmental Disabilities

“Persistence,” “mastery motivation,” “goal-directedness,” “causality,” “agency” are all terms that can be applied to understanding how an individual perceives his or her competence in impacting the environment or responding to task demands. Although the terminology differs depending upon one’s theoretical orientation, there is consensus across conceptual fields on the following concepts:

(1) The processes of adaptation and accommodation are bolstered by a child’s ability to tolerate and seek developmentally-appropriate challenges.

(2) Children who do not perceive themselves as competent, independent agents of action tend to develop a prompt-dependent style, thus passively recruiting others to manage their challenges, resulting in missed learning opportunities and a re-ification of the child’s (and possibly parent’s) conception that he or she is “not capable.”

(3)  Without the benefit of active practice, mastery of skills slows, thus leading to fewer and fewer experiences of competence for the child.

(4) A lack of experience tolerating and managing frustration (i.e., negative affect that arises from the experience of meeting an obstacle in pursuit of a goal) results in the lack of development of self-regulation in the face of challenge.  In real-world terms, this could result in the child resorting to maladaptive behaviors within a task (e.g., throwing materials) or inappropriate behaviors prior to a task (e.g., task-avoidant behaviors, such as refusing to try a new activity). 

Early intervention may be able to impact a child’s orientation to challenge, particularly if it is delivered in a developmentally-sensitive manner, with acute attention to the reasonable “next steps” (i.e., choosing intervention targets that are emerging skills for the child and not entirely new nor entirely familiar) and specification of the appropriate levels and types of support necessarily for the child to experience mastery.  Early intervention aimed towards promoting better goal-directedness may also need to focus on multiple domains of functioning, such that a sense of competence is achieved in social interactions, communication, motor skills, and emotional regulation.  Thus, as Wachs describes, a comprehensive, integrative approach is necessary when trying to promote a temperamental tendency in an individual – goal-directedness may need to be experienced by a child in multiple domains in multiple learning opportunities in order to evolve into an overall orientation for an individual.  Therefore, in the case of a child with Down syndrome, integrating activities that promote a sense of mastery across several domains (e.g., communication, motor) are probably necessary to instill a sense of personal agency.  With these ideas in mind, the following ideas for early intervention to promote goal-directedness in a child with Down syndrome are offered for consideration. (It is important to note that these ideas are speculations based upon clinical experience with children with developmental disabilities and have not yet been substantiated by empirical study.)

I.  Errorless Teaching  – A commonly accepted, but rarely skillfully practiced instructional strategy, “errorless teaching” involves providing just enough support so that the child practices performing a task correctly and is not expected to learn through trial-and-error.  Environmental manipulation can be used to create situations where it is more likely that the child will experience success.  For example, in an activity involving receptive language discrimination of objects, the teacher would place the correct object closer to the child and the incorrect object farther away.  As the child demonstrates learning, the teacher fades the environmental manipulation to gradually promote mastery with fewer supports.

II.  Physical Supports – Physical and occupational therapists are highly skilled at determining the adaptive physical supports a child may need to successfully navigate a developmental challenge.  Our view is that these supports need to be provided as early in development as possible so that the infant with Down syndrome has the opportunity to explore his or her environment in a manner that approximates that of an infant without motor impairments.  Unlike errorless teaching where the goal is to fade the supports as learning occurs, these physical supports often remain in place for longer and the goal is less to “grow out” of needing them, but more to provide them as an environmental accommodation that facilitates exploration.  An appropriate analogy would be prescription eyeglasses – we don’t plan to provide glasses for a short period and then systematically fade them.  Instead, we provide them long-term, recognizing that the individual needs them to consistently access their environment.  The table below lists specific physical supports that could be useful for infants and young children with motor impairments, adapted from Finnie (1975) and Zeitlin & Williamson (1994):

Physical Supports to Promote Early Motor Skills

Skill/Target

Physical Support

Trunk stability

Place child in adaptive and stable seating and blow bubbles above child’s head to encourage reaching with trunk extension

Using 2 hands together

Suspend toys of interest from strings of different lengths above the child’s crib or adapted seat; make sure some are readily reachable

Hand/arm coordination

Finger-paint with pudding (or another substance that can be ingested safely) on surfaces that vary from flat to inclined positions to encourage more muscle action

Provide remote-controlled switch toys so that when the child presses a large switch the toy is activated

Moving legs and arms intentionally

Place ribbons with bells attached to the child’s ankles and wrists to reinforce movement attempts with pleasant sounds

Use sloping wedge boards or bolsters to provide stability so that child can lie on his stomach and use his hands to play with toys

Grasping

Use puzzles with large knobs on pieces

Place preferred objects on a slightly inclined board with Velcro attachments so that the child can easily grasp and pull the object

Use Velcro fasteners on clothes or as a way to store the child’s favorite blanket or stuffed toy and encourage independent retrieval of the object

Standing

Provide a mounted bar on the wall or a stable chair and teach the child to grasp it to pull to stand

III.  Visual Supports – Structured teaching is an instructional technology that originated in the TEACCH program in North Carolina as a method for clarifying task expectations and establishing predictability for learners with autism (cite).  The methodology has grown substantially in the past two decades and now encompasses a range of instructional strategies that help an individual with executive dysfunction with task orientation and completion.  One of the critical concepts in this methodology is the provision of visual structure so that the learner does not need intact receptive language or sequencing skills in order to complete complex activities.  As with physical supports, fading is not a priority in intervention, and the supports are provided as needed to encourage success. 

IV.  Embed motor challenges into highly engaging social games – For children with Down syndrome who are motivated by social interactions with caregivers, consider ways to develop play routines that provide a lot of very pleasant social interaction in coordination with some motor challenges.  Games such as peek-a-boo and hide-and-seek can be used to encourage reaching and crawling.  Song play and simple turn-taking games that require basic hand movements can be enjoyable for the kids and promote a lot of important practice opportunities.  Responding to the child’s attempts to reach or crawl with high affect and enthusiasm can be very reinforcing for some children.

V.  Develop a consistent “work-break” routine – The “work” of young children in early intervention is often defined as any activity that involves active engagement on the part of the child and is often chosen by an adult because it is important for facilitating the development of a skill.  A “break” for a young child is defined as child-directed and may involve non-functional or passive exploration.  Other times, “break” activities can actually be child-directed, functional practice of already mastered skills.  (For example, once a child has been taught how to activate a music-producing cause and effect toy, that toy can be moved from the “work” set to the “break” set.)  An interventionist or caregiver can develop a routine cycle of engaging in “work” for several seconds or a few minutes and then give the child a “break” for a similar amount of time.  Keeping the child in the same physical location is usually best, to avoid difficulties transitioning to and from instructional areas.  Keeping the “work” periods brief and practicing the shift from adult-directed to child-directed several times in a teaching interval can also help to build flexibility.  The child’s efforts and participation are reinforced with a preferred “break” activity and the emphasis is not on performance, but on engagement.  Duration of “work” periods can be gradually increased, but maintaining consistency in the routine can help to promote predictability and lessen task avoidance.  Physical and visual supports are often integrated within the “work” and “break” activities. 

VI.  Practice coping with frustration – During the preschool years, children are challenged to develop self-regulation strategies to tolerate frustration and distress.  Building frustration tolerance can be especially difficult for children whose mouths, hands and body are not working very efficiently.  We hypothesize that actively teaching developmentally appropriate forms of coping to children with motor challenges could be very helpful in reducing task avoidance, increasing engagement in learning opportunities, and promoting goal-directed learning.   Some suggestions for promoting adaptive coping in young children that could be relevant for infants and toddlers with Down syndrome are listed below:

  • Teach the child a simple, specific way to communicate that he needs help.  Augmentative communication approaches, such as providing a large switch that can be activated by the child pressing it, thus resulting in a human voice saying “help”, can be very useful in minimizing frustration for young children.  For other children, the “help” communication could be the use of eye contact with a simple vocalization or the use of a simple gestures.  Upon hearing the “help” signal, the adult provides the necessary support the child needs to negotiate the challenge.
  • Identify signs of distress and when first observed, be ready to slow tasks down, provide more physical prompting, or use a back-chaining approach (i.e., providing full assistance in the beginning of a task sequence and only asking the child to complete the last step).
  • Identify appropriate self-calming behaviors that the child can engage in when upset.  If this involves objects (such as an oral stimulator or a soft blanket), try to keep these objects in a predictable location that is easily accessible by the child. Observe the child for changes in his or her activity level, facial expression, and quality of vocalizations for cues that indicate rising frustration.  Try to intervene before the child is experiencing intense frustration by gently and unobtrusively prompting the child to reach for the calming object.  Allow the child time to self-soothe and gradually transition to a new activity.
  • Look for patterns in the child’s frustration and consider ways to minimize the distress by simplifying the task, adding more physical or visual structure, or providing help earlier in the task sequence.  There may be some underlying skills (such as postural control) that if targeted may decrease frustration in many activities.  If so, then consider enhancing intervention efforts on this domain.
  • Coach caregivers and interventionists to model calm behavior, particularly when the infant or toddler is distressed.