PARENTS’ PERCEPTIONS OF THE FACTORS THAT INFLUENCE THE PLAY

OF THEIR CHILDREN WITH TACTILE DEFENSIVENESS

by

Khawlah Abulfeilat

__________________________________________________________________

A Thesis Presented to the

FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTERS OF ART
(OCCUPATIONAL THERAPY)

August 2007

Copyright 2007 Khawlah Abulfeilat

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Acknowledgments

This thesis is dedicated to my entire family for their infinite confidence and

faith in my potentials. There support and encouragement always thrilled me to keep

going and accomplish my goals. My mother’s prayers and loving had a delightful

influence on my ability to handle all of the obstacles that I faced throughout the

process of having this work completed. My brothers and sisters, my brothers and

sisters in law’s, and my nephews and nieces active listening to my worries and

concerns had a healing effect that always instigated me to go the extra mile to have

this work done.

I highly appreciate Susan Knox’s Ph.D, OTR/L, FAOTA assistance in peer

reviewing me and in editing my work. She devoted her time and energy to read my

work and provide her feedback; she made herself available at anytime so I can call or

email her. I also would like to thank my friends who helped me in crystallizing my

ideas in order to develop my research project. I also admire their continuous support

and encouragement.

I would like to acknowledge my research advisor for her guidance, and

knowledgeable and thorough feedback. I also would like to acknowledge my thesis

committee, my chair Dian Parham Ph.D, OTR/L, AFOTA and committee members,

Florence Clark, Ph.D, OTR/L, AFOTA, Gelya Frank, Ph.D for their knowledge and

expertise in providing thorough guidance and insightful feedback. I also highly

admire Jeannie Jackson Ph.D, OTR, FAOTA a member of my first committee

meeting advice and feedback throughout the research process and her worries about
 iii

me finding another faculty to take her place when she was not able to make it for the

second meeting.

In addition, I would like to give my sincere appreciation to the parents who

willingly devoted their time to participate in this study and make this work doable.

Moreover, I greatly appreciate the staff’s cooperation at PTN and their desire to help

in recruiting participants for my study.

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Table of Contents

ACKNOWLEDGEMENTS ..................................................................... ii

LIST OF TABLES ................................................................................... v

ABSTRACT ............................................................................................. vi

CHAPTER I: INTRODUCTION TO THE PROBLEM .......................... 1

CHAPTER II: LITERATURE REVIEW ................................................ 11

CHAPTER III: METHODOLOGY ......................................................... 27

Figure 1: Factors that influence the play of children with TD
from the parents’ perspective ................................................................... 38

CHAPTER IV: RESEARCH FINDINGS ................................................ 39

CHAPTER V: DISCUSSION .................................................................. 76

REFERENCES ........................................................................................ 94

APPENDICES .......................................................................................... 99
 v

List of Tables

Table 1: The Participants’ Characteristics ……………………………. 31

Table 2: Emergent Categories and Themes for Each Participant .......... 33

 vi

Abstract

This study was designed to build upon parental perceptions to formulate a

grounded theory of the factors that influence the play of children with tactile

defensiveness (TD). Semistructured interviews were conducted with four parents of

children who were receiving occupational therapy for TD. Results revealed six major

factors that the parents perceived to influence their children’s play: the child’s

qualities; the parents’ and siblings’ qualities; the extended family members’

qualities; the physical, spatiotemporal, and social environments; the community’s

understanding of the child’s condition; and the services that the child receives.

The formulated theory showed that the qualities of the parents, siblings, and

the child influence each other and influence the child’s play; the relationships among

these factors appear to be reciprocal. The other factors influence the family and/or

the child and consequently the child’s play. The relationships among those factors

and the child and the family appear to be unidirectional, i.e., from environment to the

child and family.

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Chapter I

Introduction to the Problem

Aims of the Study

The aims of this study were to investigate the parental perceptions of the

factors that influence the play of their children with tactile defensiveness (TD).

Understanding the parents’ perceptions may help therapists devise interventions that

are geared towards serving the child within the family context. Ascertaining parents’

perceptions may help in bridging the gap between therapists and parents, and also

enable therapists to see the child through the lens of the parent. Because the parents

who participated in this study live with their children, they are likely to be attuned to

their children’s needs and have had adequate opportunities to observe their behaviors

throughout the day. Moreover, the presence of the child’s problems affect family

dynamics in different ways, including habits, daily schedule, and lifestyle. At the

same time, family values, goals, affordances, and limitations either foster or hinder

the play of the child with TD.

Specific aims of the study included the following: 1) investigate the parents’

perceptions of the play of their children with TD, 2) explore the influence of the play

of children with TD on their families, 3) explore the families’ influences on the play

of their children with TD, and 4) to lay the groundwork for cross-cultural research in

Jordan that will compare Jordanian parents’ perceptions of their children’s play with

American parents’ perceptions.

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Background of the Study

Defining and explaining play is a complicated problem (Stagnitti, 2004;

Sutton-Smith, 1997; Reilly, 1974). According to Stagnitti (2004), occupational

therapy theorists have identified characteristics of play as including intrinsic

motivation, internal control, suspension of reality, spontaneity and active

engagement, safety, focus on the process rather than the product, and the presence of

unpredictable fun (Burke, 1996; Bundy, 1993; Bundy, Nelson, Metzger, &

Bingaman, 2001; Bundy, Lane, & Murray, 2002). It may be argued that people have

the right to engage in play as one of their basic human rights, and that it is an

important human experience that people engage in for its own sake (Parham &

Primeau, 1997). Play supports the child's growth and development, facilitates

physical, emotional, cognitive, social, and moral development (Schaaf & Burke,

1997) and is considered a manifestation of the child’s development (Reilly, 1974).

Play is considered to be one of the major categories of human occupations.

Consequently, it is significant to the scope of practice of occupational therapy

(Parham & Primeau, 1997). In clinical practice, occupational therapists use play

both as a means to achieve a therapeutic goal and also as an end by itself, especially

for children with sensory integration problems.

Normal play development requires adequate sensory integrative function

(Mailloux & Burke, 1997). Ayres (1979) explains “sensory integration sorts, orders,
 3

and eventually puts all of the individual sensory inputs together into a whole brain

function” (p.28). Sensory integration organizes the individual’s nervous system,

which in turn enhances development and occupational engagement (Spitzer & Roley,

2001). When sensory integration does not function properly, children’s play may

become compromised (Mailloux & Burke, 1997). They may learn to manipulate the

world through temper tantrums and disruptive behaviors (Michelman, 1974).

Sensory integration theory hypothesizes that play behavior relates to sensory

integration and that poor sensory integration may affect play behavior (Schaaf,

Merrill, & Kinsella, 1987).

Ayres (2005) emphasized the importance of the tactile, vestibular, and

proprioceptive systems to the development of the child’s play skills. Tactile

defensiveness is commonly characterized by hypersensitivity in areas of the body,

with a high concentration of tactile receptor sites, especially the hands, feet, and face

(Mailloux & Burke, 1997). Children with tactile defensiveness may have difficulty

playing with other children because of their fear of being touched (Ayres, 2005).

Families of children with special needs are often overwhelmed with

therapeutic needs, medical intervention, and educational priorities, which may

deprive them of adequate play opportunities. Play for this group and their families

may become a secondary or even absent occupation from the family and the child’s

schedule (Burke, 1996). For children with social needs, their difficulties

compromise their ability to interact with and explore their environment.

 4

Consequently, their opportunities to learn practice skills through exploration will be

limited. Due to repetitive failure, frustration and social isolation usually follow

(Mailloux, 1996; Michelman, 1974), and lack of interest becomes a manifestation of

their inadequacy to interact properly with their environment (Burke, 1996).

Young children usually play within the family context. The family plays an

important role in rehabilitation of persons with chronic disabilities and in supporting

their reintegration into the community (Brown, Humphry, & Taylor, 1997). The

Individuals with Disabilities Education Act (IDEA) emphasizes family-centeredness

by stressing the family’s values, needs, and aspirations in developing the child’s

treatment plan.

This study arose from my belief that understanding parents’ perceptions of

their children’s play is one of the important tools that researchers in the field of

occupational therapy should employ to comprehend the play of children with TD

from an occupational perspective. The study is based on the assumption that

addressing the play of children with TD as an occupation requires acknowledging all

of the factors that may enhance or hinder the child’s play. This in turn enforces the

need to involve the parents in the process of exploring these factors, considering that

play as an occupation usually takes place within the family context.

The parents in this study were considered to be the best witnesses of the

interactions among various factors that influence their children’s play. They gave

rich descriptions of how these interactions take place and their effects on the play of

their children with TD. During the study, parents’ responses supported my
 5

assumption that they are optimally situated to describe the factors that influence the

play of their children. Conducting this research helped me understand how parents

perceive these factors and their interactions, which contributed to the formulation of

a grounded theory on how these factors influence the child’s play. The availability of

a theory of this kind may help therapists develop interventions that serve the special

needs of each child and family.

My interest in this research topic arose from my clinical experience as a

pediatric occupational therapist. I studied occupational therapy in my home country,

Jordan, where I practiced for ten years. I worked with children with TD for a couple

of years.

Throughout my clinical practice, I recognized that when parents play with

their children, they often gear their play towards the child’s therapeutic goals, not for

the sake of play itself. I also noticed that in some circumstances parents would be

completely attentive to how their child’s TD problem affected their academic

performance, leading them to disregard the child’s need to play. Parents would

sometimes forget that play is an important occupation, not only for their children but

for them as well. In my culture, play is valued, but at the same time, so too is

academic performance. Typically, parents would spend long periods of time in

therapy with their children, in finishing their schoolwork assignments, and in taking

care of the other family members.

I also observed that the presence of other extended family members,

including aunts, uncles, and grandparents, sometimes helped to decrease the burden
 6

of demands on the parents. In such cases, extended family members might help in

taking the child to therapy, in taking care of his or her siblings, or in helping with the

household activities. If they had the time, other family members might “pitch in” and

would not hesitate to help parents with daily tasks. However, extended family

members did in some instances actually increase the burden on the parents because

they had the opportunity to oversee the child’s behavioral problems first hand. In

these circumstances, the parents sometimes felt that, as a consequence of verbal or

non verbal communications, they were being blamed for the child’s behavior, or

accused of engaging in an undisciplined way of raising the child. Extended family

members sometimes criticized them, especially if aggressiveness accompanied the

child’s TD problem.

There are crucial cultural differences between the Jordanian and American

cultures, some of which are reflected in the family structure of each culture. In many

occasions, people in the Jordanian culture may live in the same family complex

when they get married, and if not, they frequently visit their parents and siblings.

While in the American culture, I noticed that families may live far away from each

other and may not visit family members often.

To lay the groundwork for a cross-cultural comparison of families in Jordan

and the U.S., I planned this study to focus on how parents within American culture

perceive the play of their children with TD, and how they evaluate the factors that

enhance or hinder their children’s play. Understanding the parents’ perceptions of

these factors may broaden our base of knowledge of the factors that interfere with
 7

the play of children with TD. As a consequence, a developed theory in this area may

enable occupational therapists to gain a holistic view of the relationship between

these factors and their effects on the play of children with TD, as well as

implications for practice.

I am planning to replicate this study in Jordan, where occupational therapy is

still in the process of development, to explore the differences in parents’ perspectives

in Jordan and in the United States. Generating more knowledge on this topic, to

include a cross-cultural comparison, will help occupational therapists in Jordan to

practice to the needs and desires of the people in my country with sensitivity.

Research Design

Qualitative research design makes possible the study of social experience in

real life. It enables exploration of the factors that create this experience, and the

effect of this experience on people’s lives (Speziale & Carpenter, 2003). For this

reason, qualitative methods of inquiry are particularly appropriate for the study of

play behavior and can be used to explore the depth of this phenomenon (Knox,

1996). It is impossible to isolate the child’s activity from the environment within

which he or she is playing, and from other familial, social, and cultural influences.

Children’s play is usually intensely affected by the presence or absence of other

people or animals, the physical setting, and the availability of toys or other objects

(Knox, 1996).
 8

A grounded theory qualitative research design was employed to investigate

parental perceptions of the factors that influence the play of their children with TD.

Utilizing this research design, interviews with four parents of children with TD

receiving treatment at Pediatric Therapy Network (PTN) were conducted and

analyzed carefully to investigate the themes that emerged in each interview and

across interviews. In this study, the themes that emerged from each of the interviews

were compared and contrasted with themes from other interviews. Then the shared

themes were clustered into categories that represent the relationships between the

factors that influence the play of children with TD from the parents’ perspective.

After that, a grounded theory that illustrates the relationships between these factors

was formulated.

Consequently, the theory that was developed addresses the relationships

among factors that influence children’s play, and acknowledges the differences in the

families’ structures and perspectives. The theory that emerged focuses not only on

the clusters of symptoms that accompany TD and the consequent behavioral

problems, but it also addresses the internal and external factors that contribute to the

child’s play patterns.

Participants in the study were four parents of children who had been

clinically identified with tactile defensiveness as a primary problem affecting the

child’s performance. Children’s ages ranged from two to nine years old. Children

were recruited by the treating therapists, who reviewed the children’s clinical
 9

records, including scores on the tactile scale of the Sensory Processing Measure

(SPM), to confirm the presence of TD as a significant clinical problem.

Research questions that guided the study were:

1. How do parents perceive the play of their children with TD?

2. How does the play of children with TD influence their families?

3. How do families and other aspects of the environment influence the play of their

children with TD?

I anticipated that some of the perceived factors that may enhance the play of

children with TD would include the parents’ insights into their children’s problems,

extended family members’ support, availability of toys, and availability of

community resources. In contrast, I expected that the perceived factors that may

hinder the play of children with TD would include parents’ low educational level,

limited socioeconomic resources, and negative attitudes towards play.

Data collection was limited by my time frame for completion of the research

project, and the participants’ tight schedules. The fact that for each participant only

one interview was conducted is a limitation. This problem is offset to some extent,

because the participants received the questions in advance and had adequate time to

reflect on their answers. This study provides a beginning point that researchers may

utilize to build upon to further study parents’ perceptions in relation to play of

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children with TD. It also demonstrates the usefulness of a grounded theory research

design to organize data on parents’ perceptions. This may prove to be a valuable

complement to other methods of inquiry that may be used in future research on

parents’ perceptions.
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Chapter II

Literature Review

The Significance of Play in Our Lives

Play is a way for children to discover and create meaning in their worlds. By

engaging in play they are able to construct an image of the world and to understand

how all of the elements within it interact, through their manipulation of objects and

actions. Through engagement in play, children can also learn about themselves in

relation to the outer world (Burke, 1996). When the play situation poses enough of a

challenge, the person is usually totally absorbed, in control, and suspends all of his or

her real life concerns (Bundy, 1993). A sense of playfulness is considered one of the

major characteristics of an interesting and fulfilling life (Burke, 1996).

Bundy (1993) claimed that if people approach their problems in a flexible,

playful manner, they will almost certainly find more expedient solutions to their

problems than if they use only one way of thinking. Based on this assumption, Hess

and Bundy (2003) proposed that internal control may link coping and playfulness,

which means that the more individuals feel in control, the better their coping skills

and the more playful they will be.

After conducting a pilot study of play and coping in preschoolers, Saunders,

Sayer, & Goodale (1999) suggested that effective play and coping skills may be

important determinants of children’s adaptive behaviors. They concluded that

adaptability to the environment, exploration of choices, creative problem solving,

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social competence, and internal motivations are shared characteristics between

playfulness and efficient coping. In their study, Saunders, Sayer, & Goodale (1999)

rated the play behaviors of 19 randomly selected preschool children using the Test of

Playfulness (Bundy, 1994) and measured their coping skills with the Coping

Inventory (Zeitlin, 1985). A positive, significant correlation was found between

children’s level of playfulness and their coping skills. Generally, girls were rated as

more playful than boys and scored higher in coping skills. Younger children (36-47

months of age) were rated as better players and as coping better than older children

(47-57 months of age). These results led the authors to hypothesize that the better

occupational therapists understand the relationship between play and coping, the

more effectively they will be able to intervene to help children reach their optimal

potentials (Saunders, Sayer, & Goodale, 1999).

In another study, Hess & Bundy (2003) investigated the relationship between

playfulness and coping skills in typically developing adolescent males as well as

adolescent males with severe emotional disturbance. A significant positive

correlation was found to exist between the adolescents’ level of playfulness and their

coping skills. Typically developing adolescents were rated as more playful than

those with severe emotional disturbance and scored higher in effective coping skills.

In their discussion of the results of their study, Hess & Bundy (2003) hypothesized

that ineffective efforts at coping may aggravate the impact of stress and contribute to

maladaptive development.
 13

This literature indicates that early play and playfulness are critical factors in

the development of resilience, which affects one’s ability to cope with stress and

challenging situations. Therefore, it is important to better understand play in children

with conditions, such as tactile defensiveness (TD) that may generate increased

stress in everyday life.

Play as Occupation

Yerxa et al. (1989) defined occupation as “chunks of activity within the

ongoing stream of human behavior which are named in the lexicon of the culture, for

example, ‘fishing’ or ‘cooking,’ or at a more abstract level, ‘playing’ or ‘working’”

(p. 5). Goldstein (1996) emphasized that occupations are characterized by goal

directedness and self-initiation. She elaborated her assertion by stating that

occupations involve rules, habits, and skills that people develop to facilitate their

functioning in the social and physical environment in which they live.

Play is a kind of occupation (Bundy, 2002) that is embedded in people’s lives

and shaped by their contexts (Zemke & Clark, 1996). Burke (1996) believed that

play is a pleasurable open-ended experience that is characterized by self-initiation,

self-directness, and infinite qualities. Therefore, it offers the player a flexibility that

is not typically found in work or self-maintenance activities.

Parham & Primeau (1997) emphasized the difference between studying play

as an occupation and studying the performance components, such as cognitive,

motor, or social skills needed to engage in play. Studying only performance

components disregards the significant characteristics inherent in play as occupation

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including self-directedness and self-initiation. It also disregards the contexts of

children’s lives, including other people, environment, and the specifics of culture.

This study contributes to the study of play as occupation by enriching our knowledge

about play in the contexts of daily lives of children with TD.

Play in Occupational Therapy

Parham & Primeau (1997) have considered play to be significant to the

practice of occupational therapy. Occupational therapists use play in practice as a

primary method for assessment and intervention (Knox, 1993; Bundy, 1993).

Occupational therapists center their attention on the whole child functioning within

the environment. This concern makes play one of the fundamental occupations

addressed by occupational therapists (Knox, 1997). Despite the fact that researchers

in occupational therapy emphasized addressing human occupation, O’Brien &

Shirley (2001) noted that occupational therapists are geared towards assessing the

skills the child needs in order to play, including motor, cognitive, and social skills.

Coster (1998) justified this action by the lack of a consistent framework that guides

the process of implementing occupation-centered assessment in pediatrics. The

occupation-centered approach addresses the person’s needs and desires within the

context that he or she typically engages in these valued occupations. Such an

approach also addresses the possible limitations to fulfillment of the person’s

expectations (Coster, 1998).

The significance of play to occupational therapy was studied by Couch,

Deitz, & Kanny (1998). They surveyed the roles that play occupies within current
 15

occupational therapy practice with preschoolers. In their study, 224 pediatric

occupational therapists completed a mailed questionnaire. The questionnaire aimed

at determining how therapists use play in their practice, their knowledge and use of

play assessments, and potential limitations of their use of play. Results indicated that

91% of the respondents believed that play is important as a motivating factor for

children, 92% of the participants stated that they use play in therapy to elicit motor,

sensory, and psychosocial outcomes in their clients or as a reinforcer, 62% stated that

they assess play behaviors, and very few participants indicated that they address play

for its own sake. A general trend was that the use of play in a practice setting was

dependent on the frame of reference of the setting and on the occupational therapist’s

role. This study showed that therapists recognize the importance of play for children,

but they think of it as a mean rather than a goal of treatment. This was shown in the

paucity of respondents who addressed play in their formal assessments and treatment

objectives.

Results of the Couch, Deitz, & Kanny (1998) study also reinforce a concern

expressed earlier by Bundy (1991), who worried that occupational therapists were

not addressing play from an occupational perspective. She encouraged occupational

therapists to acknowledge the legitimacy of play as an important practice area. She

also called for validating its importance through research. Bundy (1993) has

recommended that play be taken seriously by occupational therapists, so that they

will be able to assess, implement, and promote it adequately. She has emphasized

that a myriad of play factors including playfulness, play abilities, and opportunities
 16

need to be assessed thoroughly. Similarly, Bryze (1997) stressed the importance of

collecting information about the child’s unique history in the total process of

occupational therapy assessment. She valued both qualitative and quantitative

information regarding a child’s play as significant to the process of planning and

implementing intervention.

Studying parents’ perceptions about the factors that influence the play of their

children is valuable, considering that the parents live with and care for the child, may

empathize with the child, and have regular opportunities to observe his or her play.

This in turn enables them to narrate his or her story. Based on that, they can reflect

on the factors that enhance or hinder the play of their children. An understanding of

such factors as they are presented by the parents assisted in the development of a

grounded theory that illustrates the relationships between these factors. In this study,

parents’ interviews were analyzed to generate a grounded theory of the factors that

influence the play of children with TD. This in turn, will increase our understanding

of how TD affects the child’s play in concert with other factors within the context of

daily life.

Play in Children with Tactile Defensiveness

Children with sensory integration problems may have compromised play

skills (Parham & Primeau, 1997). The complicated relationship between sensory

integration and play is dependent on the development of a number of

neurobehavioral capacities, including the ability to receive, perceive, and integrate

sensory information with motor responses. Sensory integration provides the

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scaffolding for more complex thinking and doing that emerge in the everyday play of

a child. Consequently, these play behaviors facilitate further sensory integrative

development (Mailloux & Burke, 1997).

Tactile defensiveness (TD) is a type of sensory integrative disorder that may

affect children’s play behavior at a very early age in pervasive ways (Ayres, 1979;

Ayres, 2005; Mailloux & Burke, 1997). TD is a condition frequently seen in

children with learning disabilities and developmental delays, as well as more serious

conditions (Ayres, 2005). Ayres (2005) defined TD “as the tendency to react

negatively and emotionally to touch sensations” (p. 106). The normally developing

tactile protective system warns the person against possible physical harm and assists

him or her in handling situations that are threatening. When activated, the protective

system of children with TD interprets minute cutaneous stimuli as signs of danger

and distress. It alerts the person to stimuli by eliciting emotions appropriate to “fight

or flight,” and by evoking motor activity (Ayres, 1964). In children with TD, the

protective tactile system is overly sensitive to stimuli that other people would hardly

feel. Touch sensations may cause major disruptions in the child’s life that could be

associated with negative emotions and behaviors (Ayres, 2005; Baranek & Berkson,

1994). These negative responses may be a result of activation of the protective

system to a greater degree than in typically developing children (Ayres, 1964).

In an early study of TD, Bauer (1977a) developed a checklist of objective

behavioral observations thought to indicate TD. Bauer (1977a) tested 10 typically

developing and 10 hyperactive 5-year-old boys to develop the major categories for
 18

the checklist. Nine categories emerged as a result of the study. Four of these

categories were determined to be directly observable as a response to tactile input.

These were, “negative reaction” (a negative verbal response following the tactile

input) “stimulus reduction” (a physical response including providing additional

sensory input or pressure on the area that was stimulated) “withdrawal” (physically

withdrawing body part or self from the tester) and “aggression” (physical responses

of physical aggression towards the tester, test objects, or self). The other five

generalized behavioral responses can happen in any testing situation but could be

responses to tactile stimulation. These behaviors were “distraction” (a verbal

response that indicate an attempt to change the subject, or end the test situation, or

divert attention to other irrelevant stimuli), “complaints” of somatic origin or of

environmental factors, “mannerisms” (a repeated self-stimulatory or facial reaction

to the tactile input), “anxiety” (verbal statement indicating general anxiety regarding

the test situation), and “increased movement” (extraneous physical activity during

testing). By the end of the study, “Mannerisms” was eliminated from the checklist

due to lack of reliability (Bauer, 1977a).

Bauer (1977b) then utilized the Tactile Sensitivity Behavioral Responses

Checklist developed in the pilot study (Bauer, 1977a) to compare the behavioral

responses that define tactile defensiveness between typical children and children

with hyperactive behaviors. Participants were 15 hyperactive and 25 typically

developing 5-year-old boys. The checklist included all of the categories from the

initial study (Bauer, 1977a), except for “mannerisms,” which was eliminated due to
 19

low reliability. In addition, a new item, “test incompletion,” was added to the

checklist because some of the children in the hyperactive group during the pilot

study (Bauer, 1977a) were unable to complete certain tests. A significant difference

between groups was found for seven of the nine categories. Boys with hyperactive

behaviors displayed a greater frequency of negative reaction, stimulus reduction,

distraction, withdrawal, aggression, anxiety, and test incompletion than boys in the

typically developing group. Those behaviors were defined as tactile sensitivity and

they were not as prominent in the typical group as in the group of children with

hyperactive behaviors.

The results of the preceding studies highlight the negative behavioral

responses that children with TD display as a response to tactile input. These negative

behaviors may influence children’s play. Early stages of play development are

characterized by tactile exploration, especially through manual and oral manipulation

of objects. Children with tactile defensiveness usually avoid certain textures. This in

turn limits the range of experiences and skills the child develops (Mailloux & Burke,

1997; Case-Smith, 1991). Children with tactile defensiveness often put objects into

their mouths with decreased frequency during infancy, compared to typical children

without TD. Children with TD may experience difficulty with developing adequate

skills for eating solid foods, vocalizing, and for managing and manipulating

playthings. Limited sensory experiences in infancy may also contribute to limitations

in visual and manipulative skills that emerge directly from early tactile experiences

(Mailloux & Burke, 1997).

 20

Case-Smith (1991) conducted a study to investigate the effect of tactile

defensiveness and tactile discrimination problems on in-hand manipulation in

preschoolers. Fifty children aged 4-6 years participated in the study. Forty-one of the

children attended a day-care center and did not have documented developmental

delay. Tactile defensiveness and poor tactile discrimination, however, were assumed

to be present in some of them. The other 9 children attended a preschool for children

with developmental disabilities. Three tactile discrimination subtests of the Southern

California Sensory Integration Test (SCSIT) (Ayres, 1980), Finger Identification,

Graphesthesia, and Localization of Touch, were administered. Tactile defensiveness

was measured through clinical observation ratings during administration of tactile

discrimination subtests. In-hand manipulation was evaluated in three tasks including

“turning” (fingertip prehension and on rotation of a peg), “translation” (finger to

palm and palm to finger translation with stabilization) and “rotation” of the peg

between fingertips. The results of the study showed that children with both tactile

defensiveness and tactile discrimination problems had significantly poor

performance and required more time to complete the turn and translation tasks,

compared to typically developing children. Despite the fact that the presence of both

tactile defensiveness and tactile discrimination problems is associated with in-hand

manipulation problems, neither problem in isolation seemed to affect in-hand

manipulation. If tactile defensiveness is not a problem, children may compensate for

decreased tactile discrimination by utilizing other sensory systems such as vision to

accomplish effective manipulation. This study reflected the effect of tactile

 21

defensiveness and discrimination on in-hand manipulation, which is an important

skill for children to explore and competently manipulate playthings.

As children grow, many play experiences continue to involve tactile

sensations. Common activities include playing with sand, grass, and finger painting.

Children with tactile defensiveness consider play with sand, grass, mud, water, finger

paints, and putty aversive (Ayres, 2005; Lane, 2002; Mailloux & Burke, 1997), and

will therefore avoid it. Furthermore, tactile input from being close to other children

who may touch them lightly when sharing materials, moving around, or knocking

into them unpredictably (Ayres, 1964) may cause a negative reaction in children with

TD (Ayres, 2005; Lane, 2002; Mailloux & Burke, 1997). This in turn will hinder

their social play; they may become withdrawn or they may behave aggressively with

other children. Imaginary play activities such as dressing up may also be avoided due

to the impact of aversive responses to the touch of different clothing textures. When

children get older, contact sports such as soccer, football, or baseball may distress

them and hinder participation in these play activities, as these kinds of games require

touching or being touched by other children and may thereby provoke an aversive

response (Mailloux & Burke, 1997).

Children struggling with tactile input may avoid initiation of and engagement

in certain play situations. Royeen (1985) conducted a study to develop descriptors of

behaviors associated with TD in elementary school aged children. As a result of the

research, 47 descriptors emerged. Some of the play relevant descriptors included “it

bothers me to play on a carpet”; “I like to play on a smooth floor”; “after someone

 22

touches me, I feel like rubbing that spot”; “it bothers me to walk barefoot in the grass

and sand”; “it bothers me to play in a sandbox” ;“going to the beach bothers me”;

“getting dirty bothers me”; “finger painting bothers me”; “it is hard for me to pay

attention”; “I have difficulty making friends, it bothers me to be hugged or held”; “it

bothers me when someone is close by”; “I get in fights”(Royeen, 1985, p. 598).

Those descriptors and others reflect the practical implications of TD on children’s

play.

Baranek & Berkson (1994) tested the level of TD for 7-14 year-old children

with developmental disabilities (N=34). They used three preliminary measures to

determine the level of TD including teacher rating, the Touch Inventory for

Preschoolers (TIP) (Royeen, 1987), and the Tactile Defensiveness and

Discrimination Test (TDDT) (Creedon & Baranek, 1988). After determining the

children’s TD level, the children were presented with a repeated tactile stimulus

while they were engaged in computer games. The authors recorded the intensity,

duration, and latency of the response on each trial. Children who demonstrated

higher levels of TD on some of the preliminary measures also showed higher

responsiveness in the experimental situation. TD may distract the child and affect his

or her ability to concentrate on the task at hand (Case-Smith, 1991); consequently,

this may affect his or her engagement in play.

Baranek, Foster, & Berkson (1997) studied the relationship between TD and

stereotypical behaviors in children with developmental disabilities. Teachers

nominated 28 children as having at least one kind of unusual or stereotyped behavior

 23

based on completing the stereotyped behavior checklist (SBC) (Baranek et al., 1995).

The participants who scored higher on the TIP and the habituation to tactile

stimulation (FACE-HAB) tended to show more stereotypical behaviors. These

stereotypes included “rigid behaviors,” “repetitive verbalizations,” “visual

stereotypes,” and “abnormal focused affections” (e.g., affinities for certain objects).

Pfeiffer, Kinnealey, Reed, & Herzberg (2005) conducted a study to determine

the relationship between dysfunction in sensory modulation (including TD),

symptoms of affective disorders, and adaptive behaviors in children and adolescents

with Asperger’s disorder between six and seventeen years of age. The results of the

study indicated that there were strong significant positive correlations between

sensory defensiveness and anxiety in children and adolescents with Asperger’s

disorder in all age ranges. Moreover, greater impairment in adaptive behavior

involving community use and social skills was associated with more severe

symptoms of sensory modulation dysfunction, such as TD.

Even though the results of the reviewed studies indicated that TD may have a

pervasive effect on children’s play, there is paucity of research that examines the

factors that influence the play of children with TD. The information that we have is

based on clinical observations that relate the symptoms of TD to the behaviors of

children in play situations. The symptoms of TD are not adequate predictors of how

the child with TD will play, and do not explain how other factors enhance or hinder

his or her play. Understanding the factors that may interfere with or enhance the play

of children with TD will help therapists to devise better interventions that

 24

acknowledge all of the contributing factors and the individuality of the child within

his or her everyday life contexts. One of the important methods that may enhance

this understanding is studying parents’ perceptions of these factors. Parents usually

have frequent opportunities to observe the child throughout the day and are likely to

be sensitive to the problematic behaviors the child with TD may exhibit while

pursuing play. They also are likely to observe situations in which their children are

able play well. In this study, I investigated parents’ perceptions of their child with

TD in order to develop a grounded theory of the factors that facilitate or impede the

play of children with TD.

Parents’ Perceptions of Child Play

Each family has a distinctive way of interacting and behaving, and specific

concerns, priorities, and goals in life (Missiuna & Pollock, 1991). The Individuals

with Disabilities Education Act (IDEA) emphasized family-centeredness in

intervention and acknowledged the importance of addressing the family resources,

priorities, and concerns. It also enforced the importance of identifying the supports

and services necessary to enhance the family’s capacity to meet the developmental

needs of the child (Cohn, Miller, & Tickle-Degnen, 2000).

In a study utilizing extended observations and interviews of preschool

children in a child care center, environmental and caregivers’ characteristics that

enhance or inhibit play were shown to be as important as the inherent characteristics

of the child (Knox, 1996). In this study, environmental characteristics that affected

playfulness were the presence of a variety of toys and objects, provision of novelty,
 25

and multiple opportunities. When the parents promoted play behavior and were

interested in the child’s activity and achievements, the child tended to be more

playful. This suggests that parent perceptions of their child’s play may have

important implications for how the parent structures daily routines that either

promote or impede play. Parent strategies that promote playfulness, such as child-

directed activities and opportunities for choice, exploration, and creation may have a

powerful effect on child development (Knox, 1996; Missiuna & Pollock, 1991).

Parents’ attitudes towards their children’s play may be critical factors that

enhance or hinder the play of children with TD. Analysis of the parents’ perceptions

of the factors that influence their children’s play will provide a valuable strategy for

developing a comprehensive view of the kinds of behaviors and activities that are

most important for children to engage in play given their particular life situation

(Burke & Schaaf, 1997). Understanding the parents’ perspectives allows the therapist

to focus on interactions as a sequence of events that relate to each other across the

different environmental spectra that the child encounters (Burke & Schaaf, 1997;

Cohn, Miller, & Tickle-Degnen, 2000).

This study uses grounded theory to uncover the factors that parents perceive

to influence the play of their child with TD. A similar method was used by Cohn,

Miller, & Tickle-Degnen (2000). These researchers conducted a study utilizing a

grounded theory qualitative research method to explore parents’ points of view

regarding their hopes for the outcomes of occupational therapy using a sensory

integration treatment approach. Three themes significant to the occupations of

 26

children and two themes important to the occupations of parenting and maintaining

family life emerged. Child-focused results included social participation, self-

regulation, and perceived competence. Parent-focused outcomes included learning

strategies to support children and obtaining personal validation.

In another study, Cohn (2001) investigated parents’ points of view regarding

their children’s participation in occupational therapy using a sensory integration

approach. Data were collected through parent interviews and were analyzed using

grounded theory methods. The parents’ perceptions of the benefits of therapy for

their children were categorized into three interrelated constructs: abilities, activities,

and reconstruction of self-worth. Parental benefits included understanding their

children’s behavior from a new perspective, which facilitated a shift in expectations

for themselves and their children; having their parenting experience validated; and

being able to support and advocate for their children. These studies revealed the

usefulness of the grounded theory research method in investigating parental

perceptions and hopes. The present study similarly used grounded theory to

investigate parents’ perceptions of the factors that influence the play of their children

with TD.
 27

Chapter III

Methodology

Research Design

Grounded theory research design was utilized in this study. Grounded theory

offers a systematic and well recognized approach to studying the richness and

diversity of human experience in order to generate theory related to the use of

occupation to enhance health and well being (Stanley & Cheek, 2003). It employs an

inductive analytic technique to examine social situations and the social construction

of reality. The purpose of grounded theory is to create theory that is empirically

“grounded” in the data collected (Glaser & Strauss, 1967).

Grounded theory is considered to be particularly useful for this research

because it is an appropriate research method in areas where little is known about the

phenomenon of interest, or where there are few adequate existing theories to explain

an individual’s or a group’s behavior. Moreover, it also studies the phenomenon in

its natural environment. The developed theory must be grounded or induced from

the data (Stanley & Cheek, 2003).

Purposive sampling was used to recruit participants, who were the primary

caregivers of children who met study criteria for tactile defensiveness. Purposive

sampling ensures that the participants have experience in the phenomenon of interest

(Speziale & Carpenter, 2003).

Use of a grounded theory research method with purposive sampling provided

the researcher with a deep understanding of how caregivers of children with tactile
 28

defensiveness perceive the factors that influence the play of their children. It also

was instrumental in developing a theory that explains and describes the relationships

among these factors. Such a theory may lead to the development of a comprehensive

intervention that takes into consideration the identified factors and their

interrelationships.

Participants

Participants in the study were mothers of 4 children with tactile defensiveness

who were receiving services at Pediatric Therapy Network (PTN), located in the

greater metropolitan area of Los Angeles. In the proposed study, I was planning to

recruit five participants, but only four parents participated, due to the restrictions of

the exclusion criteria and the low rate of response from eligible parents, as well as

my time line for completion of the study.

In order to participate in the study, parents needed to have children with tactile

defensiveness (TD) as a primary problem affecting their performance, as judged by

the clinicians providing occupational therapy to the children. To identify potential

participants, experienced clinical staff at PTN reviewed clinical records, including

scores on a routinely administered clinical assessment, the Sensory Processing

Measure (SPM) Home Form (Parham & Ecker, 2007). Parents were eligible to

participate in the study if the child had a raw score of at least 17 (> +1.0 standard

deviations from the normative sample mean score) on the Touch Scale of the SPM,

indicating a tactile problem. Some parents who were eligible to participate had

children with TD who met the SPM score criterion for the study, but were younger
 29

than the SPM normative sample. These parents were considered to be eligible for the

study because research on the precursor to the SPM, the Evaluation of Sensory

Processing (Parham & Ecker, 2000), indicated no age-related trends in scores of

children aged 3 years-6 years and11 months, with or without sensory processing

problems. In addition to the SPM score criterion for inclusion, parents were eligible

to participate in the study if they were fluent in spoken English, as judged by the

recruiting therapists.

Exclusion criteria included children with medical diagnoses involving

neurological disorders, developmental delay, orthopedic conditions, and autism

spectrum disorders. No exclusions were made on the basis of age, gender, or

ethnicity of the parent or child.

Eligible parents were contacted by the treating therapists to invite them to

participate in the study. The treating therapists gave the eligible parents a letter that

informed them about the study and invited them to participate. A detailed description

of the study and its purpose were clearly explained in the letter (see Appendix A). A

copy of sample interview questions developed specifically for this study (Appendix

B) and used to guide the interviews was attached to the letter. This oriented the

eligible parents to the focus of the interview so that they could be comfortable and

prepared when they decided to participate. The letter indicated that parents who were

interested in participating in the study should contact the researcher. I reviewed the

Participants’ Information Sheet (Appendix 3) with the first four parents who

responded back showing interest in participating. When they agreed to participate,

 30

they were then interviewed. Because the IRB approved this study as exempt due to

anonymity of interview records, the participants did not sign a consent form.

Participants’ characteristics are summarized in Table 1. The participants’

children’s ages ranged from two to nine years old. Three of the participants had two

children and one of them had four children. The birth order of the child with TD

varied between first and second. One of the children did not have another diagnosis,

one of them received a diagnosis of ADHD, one was going through the evaluation

process to rule out autism during the study, and the fourth was going through the

diagnostic process to rule out obsessive compulsive and anxiety disorder at the time

of the study. The educational level of the mothers ranged from high school diploma

to bachelor’s degree. Two of them were housewives, one worked from home, and the

fourth had a full-time job. Three of them were married and one was a single mother.

Procedures

Participants determined the times, dates, and places for the interview to take

place. Due to scheduling constraints, all of them chose to be interviewed at PTN

during the time that their children received therapy. The length of the interviews

ranged from an hour to an hour and a half. I asked for the participants’ permission to

take notes during the interview, however, their real names and the names of their

children and other family members were not recorded in writing or on tape.

Participants were informed that they would be given, via contact with the recruiting

therapists, my codes and categories to verify the reliability of data. To maintain

confidentiality, pseudonyms were used throughout the study.

 31

Table 1: Participants’ Characteristics

Participant Child’s Child’s Number Education Work Marital Child’s
age birth of status status Medical
(years) order siblings Diagnosis
Kay 5 first one Bachelor’s Work from single R/O
degree home obsessive-
compulsive
& anxiety
disorders
Sandy 9 second three High Full-time married ADHD
school public
diploma relations
employee
Dana 3 second one Bachelor’s housewife married R/O autism
degree
Nora 2 second one Bachelor’s housewife married none
degree

Note. R/O = child being assessed to rule out diagnosis.

Data Analysis

Data analysis took place concurrently with the data gathering process. I

immersed myself in the data from the beginning to the end of the process of data

analysis. I analyzed the transcripts paragraph by paragraph and assigned codes. In

some instances, more than one code was assigned to the paragraph. Codes are short

phrases or words that describe what is happening, often quite close to the original

words of the participants. Codes then were clustered with similar codes into

categories (Stanley & Cheek, 2003). Coding serves the purpose of capturing the

commonalities of experiences across cases (Ayres, Kavanaugh, & Knafl, 2003).

The core categories that arose from the data are somewhat like central themes

and became the basis for the generation of theory (See Table 2). Once the core

categories were identified, the theory was developed (Stanley & Cheek, 2003).
 32

Codes and categories from each transcript were compared and contrasted with other

codes and categories from the other transcripts. I utilized color coding to

discriminate the categories. I marked each category with specific colors over the

four transcripts. When the core category occurred repeatedly in multiple contexts, I

considered the category as a theme. Those themes that had explanatory force, both in

individual accounts and across the sample, were most likely to apply beyond the

sample (Ayres, Kavanaugh, & Knafl, 2003).

During the data analysis process, I wrote memos. Writing memos is a way of

preserving emerging ideas and hypotheses about the data as analysis is conducted.

As ideas struck me, I coded them in the form of a memo. The ideas arose as a result

of analyzing the data and were thus grounded in the data.

The writing of memos helped to record the development of the theory and to

explore potential changes that may need to take place in the research procedure

including the focus of the research questions or the tentative hypothesis. The memos

also helped to record categories and ideas that seemed to be unrelated to the

emerging theory, and in recording methodological decisions and problems (Stanley

& Cheek, 2003).

 33

Table 2: Emergent Categories and Themes for Each Participant

Category Kay Sandy Dana Nora
Child’s qualities: Playful Playful Playful Playful
-Playfulness Imaginative Enjoys play that Highly motivated Highly motivated
-Internal Controlling requires Not very Determined
motivation Prefers solitary cognitive skills interactive Curious
-Personality play Controlling Determined Explorative
characteristics Does not like Prefers solitary Controlling Enjoys play that
-Curiosity certain textures play/ not social Enjoys play that requires
-Determination Collecting stuff Avoids play that requires cognitive cognitive skills
-Skills in play She avoids incorporate skills Does not like
-Tactile mushy, slimy, manual skills and Does not like certain textures
processing and sticky exposure to certain textures Wants company
issues textures, and different tactile Solitary He avoids
-Type of play getting dirty qualities Cause and effect mushy, slimy,
Competitive and and combining sticky textures,
likes challenges things and sand and
Does not like She avoids grass
certain textures mushy, slimy, and
Builder sticky textures,
He avoids and most of the
mushy, slimy, time sand and
and sticky grass
textures
Parents’ Mother shows Mother Mother Mother
qualities: high level of understands the understands the understands the
-Level of understanding child’s special child’s needs child’s needs
understanding of Father is not needs Father does not Father is very
the child’s involved Mother acknowledge the helpful when he
condition Many sympathizes with child’s needs and has time
-Shared responsibilities the child is not very much Father is very
understanding Due to tight Parents are informative of the creative in
-Cooperation family schedule/ consistent in child’s problems engaging his
between parents limited play handling the Father does not child in play
-Constancy of opportunities child’s condition cooperate enough Father is
handling the especially during Mother is the Father not cooperative
situation the week person in charge sympathetic Father loves kids
-Responsibilities with the kids enough Mother has many
and duties of Mother and Mother has many responsibilities
each parent father work and responsibilities and she needs
have many and she needs help and time for
responsibilities help herself
Due to tight Due to tight Due to tight
family schedule/ family schedule/ family schedule/
limited play limited play limited play
opportunities opportunities opportunities
especially during especially during especially during
the week the week the week
 34

Table 2, continued
Category Kay Sandy Dana Nora
Siblings Younger energetic Older sibling Older sibling/ Older sister with
qualities: sibling/ needs lots understands the very caring and special needs
-Birth order of attention child’s condition understanding She needs
-Siblings’ and may Helpful special attention
understanding of cooperate Assists his Not very helpful
the problem The younger mother Mother needs
-Children’s sibling may not. Sensitive to his extra time with
personality Siblings don’t sister’s needs her to finish her
characteristics bother if the child assignments and
-Sibling with tends to play by to take her to
special needs himself therapy
Extended family Grandmother Extended family Different Different
members’ babysits the kids, members generation generation
qualities: but she lets them do understand the Difficult to Difficult to
-Level of whatever they want child’s condition understand understand
understanding to She does not Uncle tends to Judgmental Judgmental
the problem cooperate with the help by inviting Gives Gives
-Tendency to mother in the child to sleep unsolicited unsolicited
help the family disciplining the over informative informative
-Sensitivity to kids, but the mother advice advice
the family’s needs her help often Grandmother Not sensitive to
needs to babysit the kids not sympathetic the child and
-Different Not sensitive to family’s needs
cultural the child and Not helpful
backgrounds family’s needs
-Different
generation
-Potential to
understand
Physical, Availability of toys, Availability of Availability of Availability of
spatiotemporal space, mother and toys, space, and toys and space. toys and space
and social brother. siblings The mother tries Limited play
environment Mother gives the Mother can be to be available opportunity with
child time as much available to play as much as she adults due to the
as she can, but she with the children can tight schedule
plays all the time by only in the Limited social Limited social
herself weekends, but he interaction interaction due
plays by himself to the family’s
all the time tight schedule
May visit other
family members
and they come
over
 35

Table 2, continued
Category Kay Sandy Dana Nora
Community Judgmental No problem Judgmental Judgmental
-Level of Critical Critical Critical
understanding Staring Staring Not well
of the child’s Oblivious to the informed
condition condition
Services The social training Does not believe SI treatment SI treatment did
services help that the child’s helps, the child not help a lot, but
SI intervention tactile issues are started to the time that the
does not help; the influencing his approach some child spends in
child becomes functional of the textures the clinic is good
hyper after the performance, but that she used not for him to play
session, but the she believes that he to like and she and interact with
mother believes started to be OK is developing other children
that the outcome with certain tactile The time that
of the treatment qualities the child spends
will be of help in the clinic is
good for her to
play and interact
with other
children
Parents’ Sociable Sociable Play with Play with
aspirations for Less controlling Less controlling different different textures
the child’s play textures
-Play with
different
textures
-Becoming
more sociable
-Becoming less
controlling

Trustworthiness

In order to achieve credibility of the data, peer examination and member

checks were utilized. In peer examination, I discussed the research process and

findings with an unbiased colleague who had experience with qualitative research

methods. The peer reviewer, Susan Knox, PhD, OTR/L, FAOTA is a therapist with

over forty years of pediatrics experience. She is a clinical faculty member at USC
 36

and Director Emeritus at Therapy in Action, a private occupational therapy clinic in

the greater metropolitan Los Angeles area. She received her MA and PhD in

occupational therapy and occupational science at USC. She was research assistant to

Jean Ayres and is an instructor in the USC/WPS Comprehensive Program in Sensory

Integration. She is the author of the Knox Preschool Play scale and her doctoral

research examined the play styles of preschool children. In meetings between us

insights were discussed and problems were presented as a form of debriefing

(Krefting, 1991). After the peer reviewer received and reviewed the transcripts of the

four interviews, she met with me in person one time for about three hours to discuss

the emerged categories and themes. That meeting was followed by a series of e-mails

and phone calls to discuss the emerging thoughts and ideas. This helped in keeping

the research honest, and aided in searching for questions that may facilitate deeper

reflective analysis. This process also increased credibility through checks of the

categories developed from the data, and by looking for aberrant or negative cases.

Peer examination also presented an opportunity for me to present the working

hypotheses for reaction and to discuss the evolving design of the study (Lincoln &

Guba, 1985).

Member checking is a technique that consists of continually testing with

participants the researcher’s data, analytic categories, interpretations, and

conclusions (Lincoln & Guba, 1985). This strategy of revealing research materials to

the participants ensured that I had accurately translated the participants’ viewpoints

into data. This in turn decreases the chances of misrepresentation (Krefting, 1991).
 37

After that, the codes and categories in addition to my summary were sent to the

participants in order for the participants to check the credibility of the data. I e-

mailed each participant the transcript of her interview through the treating therapists.

After that, the treating therapists arranged a follow up phone call in which the

participants called me to discuss the participant’s notes about the transcript and to

discuss the themes that had emerged. Unfortunately, many of the participants were

not able to thoroughly read the transcripts. Therefore, I discussed with each one of

them the emerged codes and categories, and then obtained their approval before

proceeding with data analysis. The participants agreed that my codes and categories

represented exactly what they had meant and intended to express. I did not need to

modify any of my field notes or codes based on my discussion with the participants.

After confirming that the collected data and the emerged themes were valid,

the emerged themes were presented in a diagram that sketches the theory that

evolved from the data analysis process (See Figure 1). The diagram symbolizes the

contribution of each theme to the theory and the influence of each theme on the

others.
 38

Figure 1: Factors that influence the play of children with TD from the parents’
perspective

The services Extended family

that the child members qualities
receives

The child’s qualities

including the child’s Attitudes
playfulness, personality of people
Family
characteristics, play in the
qualities
preferences, play styles, community
including the
and tactile processing towards a
parents and
issues child with
siblings’
special
qualities
needs

Physical,
spatiotemporal
and social
environment
 39

Chapter IV
Research Findings

This study was designed to formulate a grounded theory derived from

parents’ perceptions of the factors that influence the play of their children with tactile

defensiveness (TD). Data were collected through semistructured interviews with 4

mothers of children with TD, and were analyzed using a grounded theory

methodology. This chapter presents the results of the study in qualitative terms.

Even though their children’s ages ranged from 2 to 9 years, the participants

shared many perceptions about the factors that influence the play of their children. In

addition, the uniqueness of each participant and her family was evident in various

ways. Each child, family, and environment had different qualities and magnitudes of

influence on the child’s play.

The core categories and themes that emerged from the data analysis were:

(1) the child’s qualities, including the child’s playfulness, personality characteristics,

play preferences, play styles, and tactile processing issues;

(2) family qualities, including the parents’ and siblings’ understanding of the child’s

condition, shared understanding between parents, cooperation between parents,

consistency in handling the situation, responsibilities and duties of each parent, and

parents’ aspirations for the child’s play in the future, as well as sibling birth order,

personality characteristics, and need for special services;

(3) extended family members’ qualities, including their understanding of the child’s

problem, tendency to help the family, sensitivity to the family’s needs, cultural
 40

backgrounds, generation, and potential to understand the child’s needs and condition

(4) physical, spatiotemporal and social environments;

(5) attitudes of people in the community towards children with special needs;

(6) the services that the child receives.

The Child’s Qualities

The most prevalent category that emerged from data analysis was the child’s

qualities. Themes that recurred within this category were: the child’s playfulness,

personality characteristics, play preferences, play style, and tactile processing issues.

Playfulness

All the children were described by their mothers as being playful and

energetic. Nora, a mother of a two-year old child, said that her child is very curious

and energetic and that if he is well rested, he will play all day long. She said that her

son does not have specific preferences in play; he may engage in anything that

piques his curiosity; she described her child’s play by saying:

There’s nothing he prefers one over the other. I mean he likes anything, really
anything. As my husband and I say, the house is everything fair game to him.
He plays with his toys, he plays, he goes into the cabinets and you know,
pulls out pots and pans and utensils and just play with them on his own way.
He, last week, he found a toilet plunger and decided to take that and lifted the
toilet lid and started plungering the toilet (laughing), not that it needed to be,
not that it was clogged, but he was just pretending that he was doing that. So,
anything that just piques his interest, he will play with.

She elaborated describing her child’s play outside the home by saying:

Oh gosh. It depends. Anything. Dogs, I mean if he sees a dog he likes to

engage himself and chat with the dog (laughing). There’s not far from where
we live, there’s a park that has a pond with ducks and he likes to go over to
the ducks. If he could, he just will swim in with the ducks (both laughing),
but it’s just whatever piques his curiosity.
 41

The mothers of the other children emphasized the fact that their children were

playful and that they liked to play continuously, but they also mentioned that their

children had specific preferences with regard to certain toys, games, and equipment.

As described by their mothers, some of the children preferred computer games,

board games, puzzles, and Legos. Sandy, a mother of a nine-year-old boy, described

the toys that her child likes to play with by saying:

Well, like with his Legos he can build, you know, he’s very sharp at building
different things, you know, putting it together and you know building
different things, (pause) and you know like for his computer games, or play
station, or game boy, you know, and of those he’s very good at ’em where he
completes, he finishes, he beats the game,….yeah.

And Kay, whose daughter was going through the diagnostic process to rule out

obsessive compulsive and anxiety disorder, described her child’s play by saying:

I feel she loves to draw, that’s one thing she loves to do and she loves to
collect things and her collections are becoming more meaningful lately, you
know, like she has a bag of kinds of different things -- napkins, straws, some
toys, and different stuff -- and today we were playing with it. And she
dumped it out and she said “OK, this is our circus” and so she made
everything from two things, you know, made a new big circus that was really
interesting! So she likes to do things like that. When she was a little bit
younger, it used to be mostly just collecting the things then taking them out
and lining them up and organizing them and things like that and then taking
them out again (laughing), but now it’s becoming more meaningful.

Even though Dana emphasized that her three year old daughter needed lots of

stimulation and energy to get her to engage in play, she said that she might sit for an

hour by herself stringing very tiny beads on a very thin string, and she was

completely engaged in this activity without getting bored.

 42

The participants considered their children’s desire to play continuously as

being good for the child, but at the same time they acknowledged that such

continuous activity could be disruptive to the family schedule at certain times. Kay

said:

She wakes up and she starts playing with stuff and I’ve got to stop her to get
her ready, and it’s (pause), it’s hard (laughing), it’s challenging, but she’s
always doing something. Until she goes to bed, pretty much, yeah (laughing)
she is busy, she is always busy.

Personality Characteristics, Play Preferences, and Play Styles

All of the participants described their children as being happy, affectionate,

determined, and curious. Nora said that her son was very affectionate and sensitive to

others, and that he might avoid another person if he felt that he or she was not

approachable.

He’s a happy, he is happy, he has sense of humor. Oh, he does have a sense
of humor. He’s, I mean he’s very sweet happy, he’s very curious, he’s
decisive, and extremely, extremely active. He’s a handful, but there’s no
anger, there’s no reticence, nothing, about him, he is just very happy. He’s a
sweet kid. He is very affectionate, but he also can read people too. If
someone is too aggressive and he’s not just receptive to that, he will just stay
away from them.

Kay had almost the same explanation about her child’s sensitivity and ability to read

people. She said:

She understands the feelings of other people and she’s able to use that
actually to manipulate, not necessarily in a bad way, but she’s able to really
get into what other people are thinking and one of her, some of the Regional
Center who were serving and thought that, well, she is almost hyper-alert of
what other people are thinking of her.

The mothers thought that sometimes their children did not enjoy play that

involved body contact with other people. Sandy explained that her son did not like
 43

rough housing, wrestling, soccer, or other play that incorporated body contact with

other people. She explained this in relation to her child’s physique and lack of

interest:

Just, you know, just his body is more sensitive, you know, than my older
child. (Pause) He doesn’t weigh so much so, you know, he just, he’s I guess
weaker, you know, so he’s not want to, he just doesn’t like rough housing.
You know, I mean we put him in soccer and he just didn’t like it. He’s not
into the sports or he’s just, that’s not him, he’s not into those (pause), but my
other two children are. He would prefer to just be playing with what he plays
with and that’s it.

Dana noticed that her daughter was very affectionate, but she might push her brother

away when he hugged her. Although an occupational therapist might interpret this

behavior as indicating a tactile issue, Dana did not seem to have thought of it as

such:

I will say when I’m hugging my daughter and I’m also hugging my son, I
notice that she pushes my son away and I don’t know if it’s because she
doesn’t want him to be near her, or because she does not want him to be near
me when she’s near me (laughing). But you know as I said, she has the
tendency to push him away when they are together. Even when he’s trying to
hug her, sometimes, she pushes him away.

The mothers noted that, on many occasions, these children tended to be

controlling when they played with other children. They always wanted things to go

the way they wanted it to be. If they didn’t manage to control the play situation, they

might quit and stop playing. Sandy said:

Well, when they’re, when he is playing with his Legos, you know, he’ll set it
up in a certain way to battle against you know, the other child’s toys, and he
wants it done, he wants the battle to go the way he wants it, and the other
child can’t make any suggestions as to how they’re gonna engage in the battle
between, you know, the Legos or whatever.
 44

As described by their mothers, if these children didn’t manage to control their

peers or siblings, they would prefer to play by themselves. In order to guarantee

being in control, the child tended to develop relationships with children who gave

him or her the authority to control. Sandy described her child’s relationship with his

friend by saying:

Yeah, pretty much, yeah, the one friend that he has is from Pakistan, so he’s -
- the kid is pretty, pretty easy going. So I think it helps, you know, but I think
they both, you know, play what they wanna play. I think they take turns and,
you know, I don’t think he tries to take control. You know, I don’t know if
it’s different just because the other child is the same age. He hardly ever
plays with my older child, it’s more the younger one, so, he’s older so he
feels he can power over the younger one, and where his friend is his age I
think they’re just kind of, work together. There’ve been times where he wants
someone to play with him, you know, and someone to play with him and
within -- I don’t know, fifteen twenty minutes -- that person is not playing
with him anymore (laughing) so it doesn’t last long and then he kind of gets
sad sometimes because no one wants to play but it’s because he tries to
control the situation and he wants to play the game the way he wants to play
it.

Kay said that her daughter uses two different strategies when she loses

control, depending on where and with whom she is playing. If she is playing with her

brother, she might become aggressive toward him and they might get into a fight. If

it is with her friends at school or other children in the park and she loses control, she

might just quit and withdraw. Kay narrated many stories to describe her daughter’s

reaction when she lost control. Here are several examples:

Well she was playing puppets -- I heard this from one of her teachers at
school -- with another girl, and I think she didn’t get the puppet she wanted
so she got mad and, you know, she won’t get aggressive with other kids at
school but she got mad and she crawled down to the table and just she sat
there (laughing). Or, you know, she tries to teach her brother how to play
things and how to do different games or whatever, but he’s very little and he
 45

doesn’t get it most of the time, and she’ll get mad and she’ll end up hitting
him if he doesn’t do what she wants.

There’s a time when she wanted her -- What was it? Something -- rock?
object? She had to swing and another kid wanted to use the swing and I’m
like, hey, we have to let the person get on the swing now (laughing) and she
got really bent out of shape and just laid down on the sand like she was dead,
and I had to take her eventually, yeah. But usually, I mean, she’s very
capable, most of the time, of controlling herself in public without having
these things, but if something really gets her upset – (pause).

There’s an event that we went to the pool one time -- we used to live in a tiny
house in a complex that has a pool -- and there was little girl in the pool, and
she has one of her ducks or something in there and the girl got too close to
her and she just got really mad. Like when you look at her face, nothing was
going on; the girl is just sitting on the steps and she wanted to leave.

On the other hand, the issue of control and the tendency for solitary play were

not a problem for the two-year-old child’s mother. Her child tended to like to play

with others. Describing her child’s play preferences, Nora said:

He loves to be, yeah, I mean if someone were to engage him, and sometimes
he craves for someone to engage him. So, you know, it’s strikes of mood,
sometimes he’s ok playing by himself, um, I sense that he prefers someone
to engage him though, or to play with someone.

Tactile Processing Problems

Some mothers described their children as avoiding play in which they were,

or might be, in contact with certain textures. For example, if they were exposed to

certain textures on their hands, they tended to try to wipe it away or take it off. All of

the participants explained that their children did not like mushy, sticky, and wet

textures. Some of them did not like sand or grass. Describing her child’s reaction to

exposure to these textures, Nora said:

 46

You know, if he’s introduced to something for the first time. You know, a

texture that he does not feel comfortable with, then he will just kind of cringe

and not wanna be on it or near it.

Dana said that her daughter might cry and throw a tantrum if she was exposed to the

textures that she did not like, but at the same time if she was motivated to play with

something she would forget about that texture and go for it.

Yeah, it depends. She goes into cycles. So, sometimes she’ll go outside and
she won’t touch the grass, that’s the usual, in terms of barefoot. But in other
days, if she’s really motivated, I think she forgets about the grass and she’ll
go. So, I’ll try to put her outside without her shoes so her feet get used to
various, you know, sensitivities to her feet.

On the other hand, the mother of the nine year old child, Sandy, did not feel

that her child’s tactile challenges influenced his play. She did not think that the child

was exposed to tactile play at school. She mentioned that if he had to play with

things that stuck to his hands, like glue or paint, he would definitely find a way to

take the sticky material off. Her for her child’s play did not include exposure to

messy materials and she did not have concerns regarding her child’s sensory

processing issues.

Despite the fact that her daughter did not like her hands to get dirty, or for

anything to stick to her fingers, Kay believed that her daughter’s TD affected her

dressing but did not have any influence on her play. She said that her daughter said

that certain dresses “bug” her. She described the influence of TD on her daughter’s

dressing preferences as follows:

She won’t wear dresses, she won’t wear certain dresses. She won’t wear
certain underwear, there may be two dresses she’ll wear. Or she’ll wear a
 47

little bit more at this time. She is getting a little bit better, maybe three or four
dresses, she’ll wear, but two will prefer, and then there is only certain
underwear that she’ll wear and she won’t wear socks at all.

The Family’s Qualities

Another major category of findings involved family qualities, including the

parents’ understanding of the child’s condition, shared understandings between

parents, cooperation between parents, consistency in handling the situation,

responsibilities and duties of each parent, and siblings characteristics including birth

order, understanding of the child’s tactile problems, personality characteristics, and

any special needs.

Mothers consistently reported that they always wanted the child to lead a

happy life; they felt upset if the child got sad or unhappy. When there were any

challenges or conflicts between the siblings, parents described intervening in order to

prevent the situation from escalating. Depending on the siblings’ capacity to

understand, the mothers tried to explain the child’s tactile sensitivities to the sibling

of the child with TD in order to enhance sibling cooperation with him or her.

Parents’ Understanding of the Child’s Tactile Problems

The parents’ high level of understanding of the child’s condition appeared to

assist the child. In cases where the mother acknowledged the child’s condition and

his or her needs, she did not push him to engage in play situations where he was not

happy. For example, Sandy reported that if her child did not want to play with his

brothers, she would ask them to leave him alone because she believed that he needed
 48

his time and space. All of the participants shared this same strategy when their child

avoided or became upset with a particular sensory input. All of them mentioned

trying to avoid the stimulus that made the child upset. Kay, for example, said:

If she gets into a fight, maybe just removes her from the situation. Usually
that, that’s usually gets her over more quickly, if she’s at home. I think if it’s
a situation where she is not comfortable with the person; it’s a little bit more
difficult to get her back. Sometimes, I mean, there’ve been times at the park,
when she’s gotten mad about things, you know. A couple of weeks ago we
were at the park and there was a little kiddo party thing, and I think, her
brother was playing with another kid and she wanted to play and she got
really mad and she went, like, sat on the slide for a long period of time that
she won’t snap out of it, and eventually we just left. Yeah, and then maybe,
then the change of scenery, you know, maybe she was still a little mad in the
car and then the change of scenery helped in changing her mood a little bit.

Sandy expressed her understanding of her child’s condition and she

commented that she tried to help him lead a happy life. She avoided engaging him in

situations where he did not feel comfortable or where he became disorganized.

Well, with his condition, I know that, that’s part of his condition so I let him,
you know, and I usually know when he’s getting to the point where he can’t
handle being around bunch of people, so you know, I say, if you wanna go
play in your bedroom you can. And with him I try to encourage him to get his
space because if you don’t let him have his space then you know, there could
be more issues, you know, and I don’t think there’s any need to have issues if
I can feel that he’s ready to and needing to go play by himself. Often, I
usually say why don’t you just go to your bedroom and play and he’s fine
with that, you know. He’ll go in there and he loves it so it’s never, it’s never
like a punishment or anything to him, because he enjoys just being in the
bedroom with his toys, you know, just playing with his toys.

All of the participants commented that they went with the flow when they

played with their children. They tried to enjoy their time and make the child happy.

Dana said that she engaged her daughter in play situations that helped in developing
 49

skills and that had therapeutic goals. At the same time she still avoided play

situations that made her daughter sad or unhappy, like playing with glue, paint, or

sand.

I do a lot of singing and a lot of just jumping, a lot of body. I am trying to

tumble a lot. We do some ball playing, just ball tossing. I have to confess, I
haven’t done a lot of sensory work with her, because I don’t wanna see her
cry; so I haven’t really focused at bringing out a bucket of sand or bringing
out a bucket of beans or bringing out the soap on a table or glue or (pause). I
haven’t done a lot of that at home.

Kay said that she enjoyed playing with her daughter and she tried to encourage her to

develop organized reciprocal play skills.

Usually I just go with the flow. You know, sometimes, I’ll suggest, like,
especially when she wasn’t really that cooperative with playing taking turns
games, I would suggest stuff like that [referring to taking turns], but at this
point it’s just kind of do whatever she wants. Sometimes, I try to discourage
like the circus game because it’s so much stuff all over the place and I just
don’t wanna clean it all up because I know she won’t most of the time.

Parents’ Duties

Despite the fact that Kay is a single mother, she said that she had a flexible

schedule and that she could give time for her daughter whenever she needed to be

with her.

The fact that I am around, you know, most of the time -- I am not at work --
she is not stuck and pent up, you know. I have a flexible schedule and like I
said, I do a lot of my work at home, so I think that kind of helps because if
she wants to go to the park or whatever, I can take her and I’m ready and if
there is something she needs to do with other kids we are able to do that,
although we don’t have any friends with kids.

Other participants commented that sometimes it was hard for the parents to

give their children the adequate time and attention to play with them. Sandy has four

children and she works full-time. She said that it was hard to play with her children
 50

during the week because of the many household chores and assignments related to

the children that she had to finish everyday. The only time that she had to play with

her children was on the weekends.

Yeah, sometimes like in the weekends we play games. You know, during the
week it’s just no way because I have a fifth grader and homework is a lot and
you know he is in third and then my little one is in first. So it’s a lot of
homework, you know, once I get home from work, so we usually don’t play,
You know, much, you know, they tend to play by themselves for a little while
I am doing dinner or whatever, but usually we’ll play board games. You
know he likes to play board games. As far as play with his toys, no, I don’t
play with his toys, because he just, when he plays with his toys, you can see,
he is very intense when he is playing with his toys. You know sometimes he
can get really intense with them and other times he’ll just like normal play so
I just kind of give him his space to play with his toys and make sure the other
ones kind of (pause). -- Unless he asks them to play, or they ask him and he
says it’s OK otherwise, you know, his toy time, I kind of leave to him.

Even though Nora did not work outside of the home, she had lots of duties to

work on during the week. The presence of two children with special needs made it

difficult for her to manage her daily life. She felt that her schedule was so tight that

she could not “breathe”. She expressed anxiety about this, saying:

I am very frustrated about it, but there is nothing that I can do. Sometimes I
just wanna scream and just -- (pause) because I’m so stressed at times
particularly when my husband -- he goes out of town. It’s in cycles where he
also is out of town, and I just, I have no one. It’s just me and very often I feel
like a single parent; in that respect I mean, yes, I do get the income but very
often I’m in alone, and its just (laughing nervously). I just sometimes burst,
but I manage. I just have to move on (laughing). That’s me.

She believed that having down time to read or to practice a hobby was helpful for

parents in this kind of situation. Describing how she might spend the time if she had

extra time for herself, she said:

Anything, even if just it is to stare at the walls, just to unwind, just to chill
out. Although I do, when typically when my son is at the school for about
 51

two or three hours; I do work out which helps, but it’s not enough, it’s not
enough. I just I need more down time, time for myself to do anything. Even if
it’s to read a book; I have a whole pile of books that I would like to read. I
can’t read, I have no time to do that. I have a hobby of scrapbooking; I
haven’t scrapbooked in over a year. I just don’t have time to do that and that
fine art therapeutic, reading therapeutic, (pause) scrapbooking therapeutic. I
just -- I can’t. There’s nothing to get to. I can’t get to it.

The participants seemed very sensitive to the child’s needs, and often

expressed strong emotion when talking about this. Sandy appeared to be very

emotional when she explained how bad she feels when her younger child teases his

brother. While her voice was shaking and her eyes were full of tears, Sandy said that

she tries to interfere before her child becomes upset and cries, and that she did not

like to see him crying.

Kay also expressed her sadness when she saw her daughter withdrawing or in

turmoil and not able to get along with other children:

Well, I feel sad for her. I feel kind of bad, because I don’t understand how
she can be so lively and loud and talking constantly and then just go
completely to the other direction so quickly. Yeah, I feel sad for her.

And then she expressed her frustration with her daughter’s play style in general

because it influenced the entire family’s life.

Well, it’s just very frustrating and it’s hard, because it kind of interrupts the
flow of everything and all the relationships in the house. So, overall yeah, it
is really difficult.
Dana described how, when she introduced tactile play to her daughter, if her

daughter threw a tantrum, she usually helped her remove the irritating stimulus

immediately while at the same time calming her down with verbal reassurance:

Well, I quite wanna stop her crying, so I wanna help her take it off
(laughing). So, and sometimes I just tell her “It’s just glue! We can take it
off”, “It’s just sand! Look, it comes off.” So, I am not very good, you know,
 52

at trying to get back on the horse and just keep on putting glue on her hands
like just get -- I take it away. I try to take the frustration away from her.

The parents described trying to identify their children’s needs and feelings.

Some mentioned that they might sometimes expose the child to situations that they

hoped would help him or her to develop adaptive ways of responding to real life

situations. For example, Sandy said:

Well you know, there are some times where we have to be careful where we
go. You know, we think of, we look at how he is doing that day. Does he go,
does he stay home? But you know that’s happened a couple of times, but I
won’t say that if we plan on doing something -- You know, we typically do it
and he has just to learn to adapt. You know, he can’t let his condition dictate
to him, you know, and we, I don’t wanna teach him that, you know -- You
have to learn to deal with your condition and not let it control and consume
you. You know, so we generally will just try to just deal with it, and
(laughing nervously) hopefully the best comes out.

Parents’ Aspirations for the Child’s Play

The parents of older children reported that they hoped to see their children

become more sociable and interact more often with other children. In contrast, the

parents of the two preschool children wanted to see them playing with different

textures. For example, Nora described what she wished to see her child do, as

follows:

Play with all forms of textures, that’s about it. I mean, you know, as a kid he
enjoys all sorts of play exploratory play and all kinds of play. I just want him
to feel comfortable playing with other textures. Like in preschool there’s
finger painting, or the glue, or the glitter, or the stickers -- to feel comfortable
with using those kinds of media. Painting, I don’t know, because still when
you are painting, you are dealing with wet. You know, I would like,
ultimately I would like to see him, if he’s not comfortable, to be comfortable
with painting not only finger paint but using the brush. Playing with clay,
play dough, anything that, you know -- cause for him to get involved with his
hands, that kind of play.
 53

And Dana said:

Oh, I want her to be able to take a paint brush and you know, have different
paints and dip it and paint, and I wanna see her being able to get stuff all over
her face and be okay with it. I would love to see her comfortable with
everything that she works with, because she’s gonna need that in her life.

Kay and Sandy shared the same aspiration in wanting to see their children become

more social and less controlling. As Kay said:

Well, I want to see her a little bit more social with other kids, and she is if she
is approached by ‘em – (pause). But I would like to see her more do the
initiation in play and being able to be more flexible and not so controlling
when she is playing with other kids.

Kay expected that she might be able to achieve this goal if she spent more time with

her daughter:

I think if I spend more time playing with her and can get a better grip of what
she’s thinking and also, maybe, um -- spending time playing with her myself,
which has been my goal lately. But sometimes I get very busy. So I am
actually making an effort to make structured time where I am doing that with
her, where she’s kind of leading the routine on what she’s doing, and I’m
kind of just there playing with her and trying to maybe guide her a little bit,
but without interfering too much in it. I think that may help on the long run.
But it’s different, you know, I mean interaction with an adult is a lot different
than interaction with a child, but I think it’s one step in the right direction, I
hope. And maybe when he gets older also, it will be easier for her to play
with him and that will help her a lot, I think.

Parents Cooperation and Shared Understanding of the Child’s Tactile Problems

Mothers reported that the father’s cooperation and playful attitude helped the

child to play. Nora was very thankful for her husband, who gave all of his time

during the weekends to his child. She said that he loves kids and he is very creative

and playful. She felt that he made up for the playtime that the child missed during the
 54

week and this gave her a few hours for herself. She considered her husband’s play

attitudes to be an asset that supported their child’s play:

I think my husband’s creative ideas when he plays with him are a major asset.
I mean, when my husband, occasionally my husband has to go into work on
weekends so he’s working like six days a week. But for the most part I live
for my weekends, because then my son is able to get the play, the necessary
playtime that he lacks during the week from me. And then my husband is
hardly around during the week. You know, it’s like making up for our lost
time. And you know, my son is physical and my husband is physical with
him. And then at times my husband takes him out to walk the neighborhood.
My son likes to be out and he loves the outdoors. He loves to walk. And my
husband takes him out.
She also acknowledged that her husband was attentive and concerned about his

child’s condition and that he trusted her observations.

In fact, what is pleasant and which is nice is things that I observe -- since
we’re talking about my son -- things that I observe in him that my husband
doesn’t see -- he takes credence in what I say and he basically -- I’m in the
driver’s seat in terms of what needs to be done to correct these issues of his,
and if we have to make meetings he rearranges his work schedule, which is
nice, and he’s on board with me.

On the other hand, Dana described her husband as not having the adequate

desire and skills to engage his daughter in play. This, in turn, increased Dana’s

feelings of stress. Despite the fact that she mentioned that she understood that fathers

are not always very skilled in knowing how to engage their children in play, she

seemed concerned about her husband’s lack of engagement with their child.

I think all dads have a very limited breadth of tools, how to engage their
child; especially the child with special needs. Especially because I am the
primary caregiver, he’ll do what he can do, but he is not as in depth with
what to do. So, I feel like that I have to give him ideas of how to keep her
engaged, because what will end happening if I leave her with him, I will
leave the room and then may be fifteen or twenty minutes later I’ll hear her
start to cry, and most of the reason why is because he stopped engaging with
her. And so if he’s reading off course she’ll be bored and she’s gonna want
something to do, so so…(her voice trails off)
 55

According to Dana, her husband also did not share with her the same level of

understanding that she had of their daughter’s condition:

From a myriad of perspectives it is hard because my husband doesn’t

understand these tactile issues. Like to him, he just says, “Oh, force her to eat
the yoghurt. She has to eat yoghurt. She needs protein, she needs that,” and
he doesn’t understand it’s very sensory. That there are lots of sensory
problems in her mouth. So that causes a lot of conflict.

Siblings’ Understanding of the Child’s Tactile Problems

Some mothers described how, when they judged that the siblings were at an

adequate level of understanding and maturity, the parents tried to inform the siblings

of the child with TD about the child’s tactile defensiveness. Dana said that her son

was six years old, but he was very sensitive to his sister’s tactile needs. She tried to

explain his sister’s condition to him in a way that he could understand, in order to

seek his cooperation and to prevent her daughter’s condition from influencing her

son negatively. Describing how she explained her daughter’s condition to her son,

Dana said:

I try to, but I only go to a point that I think he understands. If I make an

explanation to him and I ask him “Do you understand what I said?” and he
says no, then I say “Okay, well, we have to make sure that we understand as
family that your sister has different challenges in her life, and it’s our
responsibility as her family to make sure that she understands us and she can
understand the people around her and we have to be patient” And so he
understands the basic explanation of it, but anything beyond that, I think it’s a
little bit inappropriate for me to think that he could.

Dana described her son as doing his best to avoid hurting his sister or making

her upset. His mother also described him as sometimes taking care of his sister.
 56

I think he tries to avoid certain situations just so he doesn’t hurt her, because
he knows that she can get hurt very easily. But if I ask him to watch her, and
if he is in the mood, he will. He’ll take care of her, he’ll help me do certain
things. Like if I say “Can you please get your sister’s clothes?” so he’ll get
them for me. So, he’s a helpful child that he knows that I need help -- when
he’s in the mood.

Participants thought that, when siblings understood the child’s condition, they would

help him or her deal with a challenging situation without undue pressure. Describing

how her children dealt with her son’s tendency to play by himself or try to control

them in play, Sandy said:

I haven’t seen that to be a problem, you know, because I guess that they
know there’s a condition and, you know, they’re learning to work with it
themselves.

Birth Order and Special Needs

As noted earlier, parents’ comments sometimes suggested that older typically

developing siblings are more likely than younger siblings to show an appreciation of

the child’s condition and needs. In Sandy’s family, for example, the older child

understood his sibling’s condition and did not push him, while the younger child

tried to tease him. However, in Nora’s family, despite the fact that the sibling was

older, did not help her to better interact with her brother. This might be explained by

the fact that she herself had special needs and had difficulty in play. Her mother

described her daughter’s limited play skills by saying:

Sometimes she doesn’t know how to play so her solution is watching video
games -- watching the video or TV, not television, but more movies or videos
or playing on the computer. So she doesn’t, you know, if she didn’t have
those kinds of issues, then I feel it will be easier for her to give him the time
of day, to balance it. You know, where she will give him the time of the day
and at the same time give to herself, but she doesn’t, so.
 57

She elaborated on how bad she felt when her son wanted to play with his sister, who

rejected him:

When he wants to play with my daughter; she’s not interested and she just,
you know, screaming “Get away! get away! Leave me alone!” You know, I
feel bad for him.

This in turn increased the demands on the mother, who had to split her time

between the two children. She had to take both of them to therapy appointments, in

addition to working with her daughter on her homework, which took long periods of

time to finish because of her level of distractibility. This mother described her

situation by saying:

I think it might let up a little bit, because particularly during the week --
homework time for my daughter -- I have to be on top of her. She’s distracted
very easily. I have to keep her on task. I have to continuously redirect her. I
have to be on top of her to make sure she does her homework. If she didn’t
have that issue, then at least that would be something, you know less stress.
Still it will be stressful, but it will be something less that I have to deal with.
She might be involved more with activities. I don’t know, it’s hard to say. I
don’t have a crystal ball.

Another mother also had to split her time between her children, even though

only one child had special needs. Despite the fact that Dana’s older son had

personality characteristics that made him very sensitive and understanding,

sometimes he was deprived of play opportunities because his sister did not like it.

And considering that the mother was very attentive to her family’s needs, she tried to

provide opportunities to give her son time whenever her daughter with special needs

was out of the scene. Dana described how she had to segregate her time between the

two children by saying:

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In terms of my son, I guess I haven’t really thought about how it affects that
other than the fact that we just avoid certain activities altogether, not
consciously, but just because it doesn’t create a harmonious environment. So
we don’t deal with it, because coincidentally he doesn’t enjoy play with play
dough, either. So, but when I do have gluing activities, I make sure she’s not
around. So, a lot of times when there’s something that she doesn’t like and he
does enjoy doing, they don’t do it together. So, we’re not doing it really as a
family, meaning myself and my children because my husband does work in a
different place. So, I can’t usually have that time with both of my kids. It’s
very segregated. So, that’s kind of not very fun.

She elaborated, describing how sometimes they had to stop an activity that her son

loves to do because his sister might throw a tantrum:

Yeah, I explain to him, I always make sure that he knows what will probably
happen. I always let him know that “Your sister doesn’t prefer those types of
activities, so she’s probably gonna have a tantrum. So, we can get started, we
can try, but I want you to know that this is a possibility; that if it happens, I’m
gonna stop your sister, but if she can’t stop then we’re gonna have to change
the activity.”

She continued:

It depends on how she reacts. If she reacts so negatively, then we’ll change it
and in a way I feel okay because I explained to him and I know he
understands. But then in a way I feel bad because I’m taking him away from
his activity. So, but I try to do as much as I can to start to do as much as we
can in the activity before we end it… I don’t know if that make sense!

In Kay’s family, the sibling was young and required much attention and care

from her. This, in turn, might have limited the play opportunities that the mother

could provide to the child with TD. The fact that Kay was a single mother also

maybe challenging for her to take care of the two children and herself without

jeopardizing anyone’s needs. Kay said that her younger child was very wild and

needed continuous attention, which in turn might hurt her daughter:

I tend to give him more time because he’s so wild and so little and I think that
hurts her. And I don’t do that on purpose. I do that out of necessity, because
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he is a crazy little boy and he’s always doing something I can’t turn my back
for a minute. Really, he’s wild. You saw him. I don’t need to tell you
(laughing).

On the other hand, Kay believed that her daughter’s rigid play behavior made it

difficult for her to engage in play with her brother:

Well, it makes it difficult that they can’t really play together that well. So it
affects him, because she’s always being stringed out, and it affects me,
because I have always to intervene constantly.

The fights between the two children made it hard for this mother to control

the situation. According to Kay, they had difficulty getting along with each other and

she needed to intervene often, because the situation might escalate to the degree that

they might hurt each other. Describing her son’s response to his sister’s aggressive

behavior, Kay said:

Okay, well, he used to just cry, but now in the last 4, 5, 6 months he gets to
the point that he’s getting aggressive right back to her and his favorite thing
to do is pull hair and bite. So, sometimes he’ll just grab her hair and go at it,
and it’s hard to deal with the kids, just -- really hard to deal with.

Extended Family Members’ Qualities

The third major category of findings involved extended family members’

qualities, including level of understanding of the problem, tendency to help the

family, sensitivity to the family’s needs, different cultural backgrounds, being from

different generations, and having the potential to understand.

Extended family members have a big influence on the child and their family life.

Their cooperation, understanding, and sensitivity to the family’s needs helped in

many ways to decrease the demands on the parents.

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Generation and level of sympathy and understanding

Some of the participants described extended family members as caring and

sensitive to the family’s needs, when they were close in age to the parents, such as

uncles and aunts. These relatives were often described as trying to be helpful in

different ways. For example, Sandy said that her brother took her son to sleep over at

his house and gave him opportunities to be independent. However, other participants

noted that, whatever their ages might have been, some of the extended family

members did not always show an understanding of the child’s situation. Describing

her extended family members’ attitudes towards her child’s condition, Nora said:

Oh yeah, well, put it this way: I tend to be a proactive person, uh huh, and
when I recognize that something is off, I want to find out, you know, what’s
going on here and perhaps if there is a solution. While some family members
are in denial that there’s a problem, so they say “Oh No! No! No!” and they
just excuse it to something else. So it’s almost, it’s the reverse. Will they give
their opinion, and it’s more of not based upon facts and information or
observation. It’s more, I don’t know if we call it naive or uninformative
opinions. Where they think that they know, but they really don’t know.

She narrated a story to explain some of these attitudes by saying:

I remember with my daughter when she was much younger, perhaps my

son’s age, she would, when she would walk into a room where there’s a lot
happening or she was unfamiliar with it, she would hold back and stay close
to my husband or myself, and my sister-in-law will try and force her to go
and play and do, and just basically jump in where my daughter was not ready
for that. And she would make some excuse, “Well she’s gonna have to learn
how to do it anyway. So, otherwise if she doesn’t, it’s gonna be a problem
with her down the road.” So it’s opinion. And, my sister in law (laughing)
was coming from a different point where I don’t think it was correct.
Certainly she was out of line for making that comment, but if she had done
her homework; she would’ve realized that’s not what to do with a child that
age. It’s only detrimental to their emotional development, if you force them
to do something that they don’t feel comfortable doing.
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Participants generally shared that when extended family members were older

and from a different generation, like grandparents, it seemed difficult for them to

understand the child’s condition. This, in turn, seemed to increase the demands on

the parents. Dana described how hard it was for her in-laws to understand her child’s

condition:

Well, grandparents is a different thing, because both of our parents come

from -- well, they’re older. They’re in their seventies and eighties, so being
from the old country, they don’t have a lot of understanding of these
problems. And so there are two factors, it’s the age and then the generation,
and just the ability to understand. So, we explained it to our families -- our
parents -- but we didn’t expect them to understand to a degree because they
may not have the capacity to.

Nora described her mother’s attitudes towards her child’s condition by saying:

Oh, yeah, with my mother. She’s in denial about my son’s issues and why
he’s coming here and she’s also in denial. I perceive it as denial, because
she’s, you know, whenever I share information with what’s going on, or my
observations about both kids; she says “Oh no, that’s not” so she just tries to
find the -- she tries to rationalize and explain a different reason for why
they’re behaving the way they are.

Some mothers felt that, as a consequence of their not understanding the child’s

condition, extended family members sometimes showed less sympathy, and might

end up giving uninformed or unwanted advice. Dana said describing her parents in

law’s attitude:

Yeah, they have their own advice but their advices are a little bit silly. So,
you know, it’s really hard to deal with that mentality, and you kind of just
deal with what kind of deal, and you give them as much information that you
think they can handle and nothing more. So, but in terms of judgment from
my dad, there is really no judgment, but from my mother-in-law, there’s a
little bit more judgment because -- I don’t know that there is a lot of inherent
sympathy. You know, some people have that sympathy and some people
don’t. Yeah, and I just don’t think that she has a lot of that. So I don’t expect.
It insults me and I argue with my husband all the time, but he grew up with it
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so, you know, if you grew up with it, you don’t see it. If you grow up in a
family that’s extremely loving and encouraging, you see the other extreme
shocking.

Even though Nora said that she was confident and did not let others' points of

views or advice influence her decisions, at the same time she tended to feel anger in

response to unwanted advice:

Perhaps twenty years younger when I didn’t have as much self assurance as
perhaps as I do now -- As they say (laughing), as you age, very often you are
sure and you have a better sense of yourself and more comfort within your,
within your own skin. And you know, I listen to them and I just move on.
You know, I get angry because sometimes they’re even home, but that does
not, I still push on and do what I have to do. I don’t question what I’m doing
or my observations about them. It’s just they’re ignorant. And I’m not saying
that because I’m better than them, it’s just they don’t know, and I entered into
a different world now, and I’m becoming more aware of certain behaviors
and things because my kids will be in this new world, if that makes sense.

Grandparents were sometimes described as having physical challenges that

prohibited them from engaging with the child in play. Nora described how her

mother and her in-laws played with her child:

It’s hard to say. He doesn’t see them that often. When he sees, let’s say, my
mother, for example -- I mean, she’s up there in years, so she’s not physical.
Usually when she sees him, she’s baby sitting him, so I can’t, you know, I
don’t see what’s going on. Maybe, they play a ball or so. With my husband’s
folks, my father-in-law is now barely able to walk. He’s on a walker so he
sits down most of the time. So, he can’t get down on all fours. He’s just
more, how can I say? He doesn’t really engage himself. Not that he is not
interested in my son. He just physically is not able to. He might talk to him.
But that’s about it. My mother-in-law, it’s hard to say, because they’re not
around him that much.

Some participants thought that the grandparents did not always feel they were

able to satisfy the desires of the child with special needs, so they avoided being with

him or her. Dana said that her mother-in-law did not admit that she did not like to
 63

baby sit her daughter because of the child’s special needs, although she did confess

to Dana’s husband once that she did not like to take care of their daughter, while she

was happy taking care of their son. Dana described how her daughter’s special needs

could be extremely demanding for the grandmother:

She’s happy because she does not have to do much work with the other
grandkids and with my son, because they are more independent. They can
feed themselves; they can bathe themselves. All she has to do is read to them
and drive them to an activity. But with my daughter, she has to be extremely
engaged, get on the floor, be repetitive with the activity, be repetitive with, be
very patient, understand that she doesn’t like goo, don’t force her. So, there
isn’t a lot of understanding with that.

Extended Family Members’ Needs

Participants all stated that some extended family members lived far away or

were too busy and overwhelmed with their personal needs and issues to help out the

families of the participants. Personality characteristics were also an important factor

in their level of involvement and approachability. Because of these issues, some

participants found that receiving any kind of help from certain extended family

members was almost impossible.

Nora described how rarely she saw her extended family:

On my side of the family, rarely do, hardly do I see my brother and my sister.
I have two brothers. One lives out of the state and hardly I see him, if I’m
lucky, once a year. And my other brother, maybe twice a year, three times.
And they really don’t engage themselves. It’s more on my side. It’s my niece,
would engage herself. My nephew, her brother, is not interested. He’s still
young yet (laughing). And as far as my own relatives, they don’t live in the
state. They live out of the state.

She described her sister-in-law’s and her husband’s attitudes toward her child

by saying:
 64

They’re around, but we don’t see them that much. I mean, when we do see
them, let’s say my husband’s sister and her husband -- my sister-in-law’s
husband, you know, would play with him a little bit and my sister-in-law
would kind of force herself on to (laughing nervously).

She elaborated, describing her sister’s in law personality characteristics:

Oh, that’s just her personality. She’s very aggressive. In fact, my mother-in-
law as well. And so if they want to be with him they will, rather than reading
my son and seeing if he’s receptive to being with them. They’re more
interested in their own needs. If they wanna be with him, they will approach
him, whether my son is ready for them or not. And that’s how it is.

Nora described being overwhelmed and very busy as common characteristics

of life in the American culture. She said that it was typical that her sister-in-law who

lived nearby did not help, nor was she very attentive to Nora’s family’s needs. She

said:

It might be typical, because they’re very much involved with their lives and
their kids’ lives, and I think that could be typical. Perhaps it’s hard to say for
this culture, and the reason that I used culture is because my husband’s
family comes from another culture, where the family is family centered.
Everything is family, family, family, and it took me a long time to accept it.
But it’s very, very, very family oriented. Every Sunday they all get, the entire
family -- aunts, uncles, cousins, grandmothers -- they all get together for a
meal and they spend the entire day together. It’s just everything is very
family centric, where, at least in this country, perhaps maybe from what I’ve
just experienced -- maybe I’m living in a bubble -- it’s not family centric.
And so as a result, the family is not there, you know, it’s not there to be
together. Everyone is in their own lives.

Kay, a single mother, expressed a need for someone to help her with her

children. Even though she did not always like her mother’s approach with her

children, she still asked her mother to baby sit her children when she needed help.

She described her mother’s approach with the children:

She spent some time with my mom, and my mom let her do things that I
won’t let her do. You know, like taking all of the towels and fold ‘em all to
 65

make some design or something out of ‘em. You know, I won’t let her do
that, but my mom does let her do it. She does spend some time. I am a single
mom and my mom has a big role. She doesn’t watch her on any consistent
level, but we go there a lot and she is there a lot.

She elaborated:

Well, she watches her a lot and I try not to be too hard on her about it because
my mom is really sensitive and she gets angry at me easily, but, yeah, she
kind of lets both of the kids run over, really.

Describing how this attitude had influenced her, and her tendency to avoid

having her mother baby sit the children, Kay said:

Yeah, I do, but you know, as a single mom it’s also like, my resources are
very limited right now. So they’re not over there every day on their own, but
you know, my son is over there right now while I’m talking to you. He has to
be somewhere.

Physical, Spatiotemporal, and Social Environments

Participants described their children as typically playing in their houses, in

the backyard, at school, or in nearby parks or playgrounds. They might play

anywhere. Kay and Dana said that their daughters loved to play even if they were in

the car. Kay said:

Oh, she plays all the time (laughing). She is always playing no matter what.

You know we could be in the car and she is playing in some way.

Due to the families’ tight schedules, the children’s school assignments, and

the time that they spent receiving services, most of the children’s play took place on

the weekends. Kay said, “Yeah, she plays more in the weekends, I guess. She is at

home more.” Sandy also said that her son might play a couple of hours a day during

the weekdays, but he played more during the weekends. She elaborated:
 66

Probably, couple of hours; I try to give him a break than not have him go
right to work, you know, homework and stuff. So usually, couple of hours
during the week, and in the weekend, you know, a little bit more, you know.
But a lot of times there’s projects, or, you know, reading or, you know, work
that needs to be done, so usually we’ll do it (laughing). Yeah, typically, you
know, he had lots of homework. Assignments are probably, like, a big book
report like once a month, so you know, reading the book and then doing the
report, so usually it takes pretty much my time during the weekend, you
know, for doing that. So I try to spread it out and, you know, throughout the
month to get it done so -- (laughing). I would say like probably Saturday,
yeah, he typically wants to play more, you know, on Saturday. You know, he
knows that on Monday through Friday it’s school, you know, so he knows
that there’s not much play time because there’s homework, and, you know,
showers and getting ready for bed (laughing), so usually Saturday and
Sunday.

Nora complained of her tight schedule and of being deprived of having time

for herself and for her children. She said that she lived for her weekends and she

described how hard it was sometimes to stop doing some of the chores to play with

the child:

Unfortunately, at the time I’m in the midst of doing something where I

cannot, you know, leave and attend to my son’s interest in play. And then as
far as me, it’s just difficult (laughing). You know, perhaps if I have help, you
know, a nanny who will come on a daily basis or a housekeeper who would
come on a daily basis; where they could attend to what I need to do around
the house, so I can then, you know, give my time to my son, then, you know,
it will be different. But I can’t and very often he wants to play and just, I
can’t. I talk to him, you know, I kind of try to talk to him and try to explain
but I just try, but I know it doesn’t work. The other times where I do put
whatever I’m doing down and I attend to his needs -- but it’s just very
difficult.

She elaborated, describing her feelings about her family’s crazy schedule:

I have a very tight schedule. I have zero time. I’ve no down time for myself.

I’m like constantly on the go. I have no time, I have no help (laughing

nervously). It’s just very tough.

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Nora speculated that a mother’s age could be a factor in her ability to raise

children, especially if they had special needs. She suspected that older mothers might

not have the same levels of energy that young mothers have:

I mean I wanted to, I mean there’s no regret, but nevertheless, it’s perhaps if I
was 20 years younger, you know, I might be feeling different, in terms of
having more time, having more -- Not that I don’t have the energy, but I get
tired. By the end of the week, it’s like, I’m, I’m whipped.

Dana was not sure if the time that her daughter spent with other children at

school was adequate, but she wanted to make sure that whenever her daughter was

around other children, she would be in the right environment.

Well, three hours a day. I think three hours is enough. I don’t know the
answer to that question. I mean she’s only three, so that’s hard to say if that’s
enough. If she could have more, I think I would support that, but I think it has
to be the right environment.

Children’s play behaviors, attitudes, and reactions are strongly influenced by

the physical and social environments they were in. This was reflected in Dana’s

statement that her daughter might play with soap when she was in the bathtub, but

she cried and threw a tantrum when the same soap was presented in a dry

environment.

Definitely, I mean it must; because she’ll play with the same soap (laughing)
in the tub and will want to touch it. If you put it on the table she doesn’t
wanna touch it.

She elaborated that her daughter needed to be in a very stimulating environment:

She definitely needs to be in a physical environment that is pleasing, so I

think if she was in here she would not be happy, because it’s one white room
and she would think it’s boring. But if she’s in a room that has a lot of
activities and they’re bright and they’re stimulating, then that’s gonna be
fully positive.
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Kay said that her daughter behaved differently in different places. Her behaviors at

home with her mother and brother were totally different than they were in the school

or on the playground.

Yeah, but she’s also very anxious -- so her interactions at school is different
than her interactions with me, or with her brother or her cousins or other kids
that she knows outside the school. Even with same kids in school, her
interaction is different after school, because all the kids go out to play after
school in the yard and she’s a completely different child after school than in
the structured environment at school.

She narrated a story to express how badly she felt when she observed her

child’s behavior in the classroom:

Sometime last week I went and worked her in her private preschool class
because she’s sent into different preschools, and I was in there for an hour
watching in the class. And I wasn’t right next to her. I was just helping doing
stuff, so I was really apt to observe her and somehow, as if -- I forget the
extent to how -- she withdrew and then that made me really sad, because I
kind of forget about it in the daily basis. And then, like whoa, I mean, there’s
such a huge difference in the way she acts in the classroom as opposed to at
home or when she’s somewhere where she is really comfortable, but I mean
it’s really, it’s really sad.

The social environment influenced the child’s play in different ways. Dana

said that her daughter needed someone to stimulate her and engage her in play:

I really think that in terms of playing, if she has someone to be with her, to
help guide her, just to -- she knows that what she’s doing is right or to teach
her what to do, or that what she’s doing is okay, meaning that she’s allowed
to do it, then that’s going to be a huge benefit for her. If she’s playing with
objects, she can do it, but then she’ll get bored easily.

She elaborated that being around children with low energy might influence her

engagement in play:
 69

So, I think environment is, plus and I think children who are around her have
to also be at a certain energy level. If she’s with children who are at low
energy level, I think that’s going to bring her down.

She also gave an example on her daughter’s play with dolls:

You know, the funny thing is, she’ll play with the doll when she’s in a
therapy session. If she’s in a one-on-one setting with an adult or just a
therapist, she will play with the doll as the activity, but if you were to put the
doll right next to her with the doll’s bottle she wouldn’t independently take
the doll and put the bottle in her mouth. It has to be part of her structured
activity. Someone has to direct her.

Kay recognized that the fact that they don’t have relationships with families

who have children, because she felt this might decrease the opportunities for her

daughter’s play or social interactions with other children. But at the same time, she

believed that as soon as her daughter went to school, she might have adequate

opportunities to interact with other children.

Okay, the only thing that I can really think of is that we are busy and we
don’t have a lot of friends with kids, but she’s always been in preschool since
she was two, so she’s had other kids to play with and he [her brother] is
younger so she doesn’t really play that much with him. So maybe she does
come with other things to do on her own, but maybe if there’s a lot more kids
around she wouldn’t play the same way. That’s the only thing that I could
think of, so maybe that could be something a little bit on the negative side.
But I don’t think it’s, I don’t think of anything other than that.

Dana said:

Well, she definitely plays a lot at school. She’s at school every day in the
morning from 8:30 till 11:30. So, she’s doing all sort of activities here, but
then in the afternoon she’s probably more limited because -- since we have to
go pick up her brother and we’re on a tighter schedule. So she doesn’t have
as many opportunities until we actually get home. So, that’s during, between
the time that she’s at school and the time we get home, she’s more limited
with what she can actually play with unless she’s in the car with the laptop.
Then she touches the buttons, or she has a maraca that she can shake, or a
book that she can just, you know, turn.
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Parents described that sometimes the presence of many people could be

bothersome to the child. These parents felt that they needed to be vigilant to the

child’s needs and give him or her the privacy that he or she needed. Sandy said that

her son was okay with the presence of people around him, but when there was a big

family gathering, this might become bothersome for him. Because of that, whenever

she sensed that her son was not happy; she asked him to go to his bedroom, as she

was sure that he was happier there.

Nora described how environmental factors assisted her child’s natural

inclination to play:

I would say, his environment, and the fact that I do have toys, developmental
toys for him to play with, and also within him, he is curious, he’s a very
curious child. So, I don’t have to help him to play, he has that within himself.
And I don’t restrict him. And I mean basically the house is a playground. I
mean certainly any dangerous objects, I try, I keep out of his reach so he
doesn’t bring harm to himself. But other than that, I don’t restrict him.

And Kay explained the social and physical environmental factors that helped her

child in play:

Well, I do always play with her whenever I have time, so she has me. She
does have her brother, although he is younger. She definitely has enough toys
to play with, enough stuff to do. So I think those are positives.

Community Understanding of the Child’s Tactile Problems

Participants felt that the understanding of people in the community, with

regard to the child’s sensory problems, was a significant influence on both the

parents and the children. Some of the parents commented that people in the

community sometimes unintentionally hurt them, either by their comments or by

their silent looks at the child. Typically developing children sometimes stared at the
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child in a way that hurt the parent. In response to these negative community

reactions, sometimes parents decided to decrease the opportunities the child might

have for interaction with other people in the community. Dana said:

Oh yeah, in fact definitely, we, we, we -- I’ve pretty much not severed, but I
very much so avoid visiting friends who have typical kids, because I don’t
want. I don’t feel like a lot of people understand. I don’t think there is enough
awareness in the community about these sensory problems. I think the
community now just started to know about autism. If they knew that there are
these sensory problems, then I think there will be a little bit more
understanding, because since there isn’t lots of awareness, it seems like you
have to deal with more questions, more looks, and more judgment. So, even
though they are friends, they’re acquaintances, in a way, as a parent, you just
want to avoid it all.

She elaborated:

I’m sad that I have to do that kind of adjustment, but at the same time I don’t
want to be in an environment that is gonna be negative for any body in,
anyone that I care for. I wanna be in an environment that’s gonna help my
kids and I want them to be around adults and other kids who understand. It’s
all about the parents and how they educate their kids, right? And what they
tell their kids. Some parents are willing to take the time to educate their kids
and some aren’t. I see a lot of kids just come and looking at her, not wanting
to be near her, yeah. So you know, of course as a parent, you’ll get upset by
that. So that’s why I don’t wanna put her in that situation.

The problem did not only end with people staring and looking, but that the

people in the community might give unsolicited advice without being adequately

informed about the condition. Nora described this as follows:

There are some folks here in the United States who can feel that they can give
what’s called unsolicited advice, and they feel that they have the right to give
this unsolicited advice. And I usually find that, I won’t say it’s age, you
know, very often I find the older folks like the grandparents-ish, you know,
senior citizens feel because they’ve gone through it already they have the
right to give this unsolicited advice. But you also get it from your
contemporary as well.
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Dana commented on this issue as well:

A lot of people don’t know what to say. You have the occasional people that
say “They do what? Why they do that?” and in terms of advice, I think, I
think a lot of people don’t know how to advise us of things, because they
don’t know about it.

Kay did not like how the parents of other children commented on her daughter’s

dressing styles by saying:

Sometimes, I mean other moms at the school, will say things, especially the
private school for some reason. Or you know I get comments like, you know,
a mom of a friend of hers, like. My daughter always wants to wear dresses
and you know, they say “You shouldn’t wear dresses. It’s too cold.” People
just say the funniest, weirdest things sometimes. So comments, yeah, I’ll get
comments from some parents about stuff like that. And then she was playing
dolls the other day. I don’t know where this came from, or balls or
something, where two things were talking to each other and one of them
goes, “Does your mother ever buy you anything besides pink dresses?”
(laughing) I’m like! This is coming from her, where does that come from,
she’s the one who always wear dresses -- Now I’m getting blaming from her!
Oh my god!. I’ve asked her, “Did somebody said that to you?” and she’s like,
no, but they probably did. She probably heard it somewhere. She would
never, I don’t think she would question why to do that, and she like, only has
two pink dresses and she keeps wearing them over and over and over again.

Due to critical responses of people in the community, Dana said that she

tended to develop relationships with other people who have children with special

needs.

I think I don’t feel comfortable too, because I don’t want the judgment either,
so I definitely found myself gravitating towards parents who have special
needs kids, and gravitating towards my friends who are extremely
sympathetic of our situation, but if I have acquaintances who don’t really
know and don’t really understand, I decrease interactivity with them.

In contrast, Kay did not think that other children avoided her daughter because of the

controlling behavior that was evident at home:

 73

No, I don’t think they really avoid her, because I don’t think that they really
know. Because I think instead of being the way she’s at home when she’s
controlling, she completely withdraws at school. I don’t think people really,
people think of it that much. I don’t think it’s recognized. They think that
she’s really shy or afraid.

Participants expressed that they need to be around people who show

understanding and sympathize with them. Nora said that she tends to like to speak

with people who are not judgmental and who are not in denial of her child’s

situation, and she completely avoids those who tend to judge or give uninformed

advice. Dana acknowledged her appreciation of the woman who comes to their house

and helps her by playing with the child. She believes that this woman is very

sensitive to the family’s needs in general, and helps by engaging the child in play,

while at the same time she may help in with household activities to relieve the

mother of some chores.

Services That the Child Receives

A final major category that emerged from the interview data was the

influence of the special services that the children with TD received. The children

received different services. All of them received sensory integration-based

occupational therapy (SI-OT), and some of them received additional services like

social skills training. Sandy reported that her child started to tolerate certain textures

after receiving SI-OT. Nora said that after an occupational therapist worked with her

child to help him in feeding, her son started to touch certain textures, although he

continued to have a feeding problem:

And so before he started the program here he had someone come to the house
-- another occupational therapist -- to work with him, to help desensitize him
 74

so he would be more receptive to the pureed, mashed, soft food. And really, I
mean, after she had finished, he’s still really not receptive to it but started to
get him to become more receptive. She started with the, I guess the, like play
dough, or like, soft things. You know, to hopefully help him become more
receptive to eating the soft mushy foods -- Touch, touch, and play. She
started off with rice, and getting him used to rice, and in the beginning he just
did not like the texture, but then he became more comfortable with it. I forgot
what other textures; like lentils, dry lentils and dry rice, just different kinds of
textures to play in, to help desensitize him.

Mothers in the study acknowledged that the tight schedule of the child,

between school and receiving other services, might limit the child’s play

opportunities at home. But the mothers believed that this did not deprive the child

from play, per se, because children typically played at school and the services that

they received were all about play, as play was used in therapy. Commenting on this

issue, Kay said:

Um, you know, she is having a lot of services lately, so she could play a lot
more with other kids. She is taking a lot of the socialization services and a lot
of things that are being done with her now, so she will play with the kids, but
she can definitely entertain herself alone -- definitely! (laughing).

Commenting on the influence of special services on her daughter’s play, Kay said:

Yeah, I do, some of the things that remain the same are collecting things. But
like I mentioned earlier, that all has become meaningful or meaning has been
added onto that. So just having objects just actually become like themes, like
overdoing a circus or, you know, something like that.

She explained the development in her child’s play styles:

I think, I think it’s a combination. I think it’s a combination of her just

developing and also the services that she’s been getting. With social
development in mind, she gets pulled out and they do social classes where
they’re teaching her about taking turns. Yeah, just maybe six months ago, if I
gave her a game, she would only just play with the cards or the pieces and
now she actually asks me, “Come, mom, let’s play Caribou, or let’s play Uno
together. And she’ll actually sit and stay, back and forth, so this has happened
very recently but it’s still a huge thing.
 75

She added:

Well, like the back and forth, taking turns, type of stuff. And more initiation,
although she doesn’t really initiate that much within the classroom setting.
She will initiate in the playground after school and she’ll go up and talk to
people a lot more and so all of the services have been helping a lot in that
way. I don’t think she is autistic because I think an autistic kid wouldn’t be
making such dramatic improvement in three months, or two months, you
know.
 76

Chapter V

Discussion

Chapter Four addressed the six factors that emerged from the interviews as

primary influences on the play of children with tactile defensiveness (TD), from the

parental perspectives. This chapter presents a grounded theory that was developed

from the findings, as well as implications for practice and future research.

Grounded Theory of Influences on the Play of Children with Tactile

Defensiveness

The factors identified in the data analysis were organized to formulate a

grounded theory of influences on the play of children with TD. The formulated

theory was sketched in a diagram that represents those factors and their

interrelationships.

Figure 1 presents a diagram depicting the grounded theory that was generated

in this study. It shows that the child’s qualities and the family’s qualities are located

in the center where each one of them influences the other; the relationship between

those two factors is depicted as reciprocal. The other factors surrounding the child

and the family (extended family, environments, and services received) may influence

the child and the family directly. While the community, one of the surrounding

factors, directly influences the family and consequently indirectly affects the child.

The relationships among these surrounding factors, the family, and the child are,

unidirectional (from the periphery to the center). Qualities of extended family

members, such as understanding, cooperation, sympathy, age, and tendency to help

 77

the family, may contribute to alleviating the demands placed on the parents and may

offer positive play opportunities to the child. The presence of stimulating physical

and social environments, including the availability of age-appropriate toys, may help

the child develop play skills. Moreover, the availability of time and space is a critical

resource that may support the child and family to engage in healthy play. In addition,

different social and physical environmental contexts evoke different responses from

the child, in regard to tactile and social play. The services that the children receive,

including sensory integration-based occupational therapy, social skills training, and

speech therapy, offer the children opportunities to play and help them develop

tolerance for challenging sensory and social situations. Negative responses of people

in the surrounding community may influence parents to avoid contact with families

who have typically developing children, which in turn may limit the play

opportunities available to the child.

In the following sections, these categories, and the underlying themes within

each, will be discussed as they relate to the formulated theory.

The Child’s Qualities

A sense of playfulness is considered one of the major characteristics of an

interesting and fulfilling life (Burke, 1996). The participants in this study indicated

that their children were playful and that they enjoyed playing all day long. The

participants said that their children showed curiosity, persistence, and determination
 78

when they played with their preferred toys. The children’s preferred toys included

Legos, computer games, board games, and puzzles. Nora, the mother of the two-

year-old child, indicated that her son was very curious and loved to play with

anything. He loved to explore and ramble around, and he liked to figure out how

things work. This is considered to be typical according to Knox (1997), who stated

that exploration that is guided by intrinsic motivation is considered characteristic in

early childhood play. The children’s tendency to play with these kinds of toys

indicated that these children enjoyed games and play with toys in which they were

competent. Rather than playing with materials that required manual handling and

exposure to different textures, they tended to enjoy play with toys that challenged

their cognitive skills.

It is both surprising and interesting to see how the participants in the study

perceive that there are positive qualities in the play of their children with TD. In

contrast to the reviewed literature on TD that did not emphasize these positive

qualities and usually highlighted how the symptoms of TD hinder the play of the

child. All of the reviewed studies on the play of children with TD in chapter 2

illustrated the negative attitudes as a consequence of the symptoms of TD that the

children exhibit in response to tactile input.

Bauer (1977a) conducted a study to investigate the behavioral responses of

children with TD in response to tactile input. The study identified many observable

responses including negative reaction, withdrawal, anxiety, and aggression. All of

 79

the participants in this study indicated that their children’s TD problem manifested

itself in avoidance of play with mushy, gooey, sticky, and wet textures. Some of

them indicated that their children avoided sand and grass as well. This consequently

influenced their play preferences and experiences. The participants indicated that

their children expressed their lack of interest in these textures by crying and throwing

tantrums. This in turn may deprive these children from the pleasure associated with

those play opportunities and may influence the development of their hands’

manipulation skills.

Mailloux & Burke (1997) argued that contact sports such as soccer, football,

or baseball may distress children with TD and hinder participation in these play

activities, as these kinds of games require touching or being touched by other

children and may thereby provoke an aversive response. In contradiction to this

view, Sandy, the mother of the nine-year old boy, did not feel that TD influenced her

child’s play. She considered his avoidance to rough housing and soccer as a matter of

interest, not as a tactile issue. Similarly, Kay attributed her daughter’s collecting and

hoarding play preferences, and her controlling and withdrawing behaviors when she

played with other children, to a possible obsessive compulsive or anxiety disorder.

This is supported by Reed, and Herzberg (2005) findings that there is strong

significant positive correlation between sensory defensiveness and anxiety in

children and adolescents with Asperger’s disorder. Moreover, Ayres (2005) stated

that children with TD may have difficulty playing with other children because of

their fear of being touched. Tactile input from being close to other children, who
 80

may touch them lightly when sharing materials, moving around, or bumping them

unpredictably may cause a negative reaction in children with TD (Ayres, 1964 &

2005; Lane, 2002; Mailloux & Burke, 1997). Frustration and social isolation usually

follow (Mailloux, 1996; Michelman, 1974). Therefore, lack of interest in certain

activities may be a manifestation of sensory problems that interfere with their

capacity to interact with their social and physical environments (Burke, 1996).

All of the participants, except the mother of the two year old child, expressed

negative feelings about their children’s tendency for solitary play and the tendency to

try to control other children when playing with them, which is considered to be a

manifestation of maladaptive behavior. This finding is consistent with Saunders,

Sayer, and Goodale (1999) who have suggested that effective play and coping skills

may be important determinants of children’s adaptive behavior and, Hess & Bundy

(2003) who formulated the hypothesis that ineffective efforts at coping may

aggravate the impact of stress and contribute to maladaptive development. Despite

the fact that the reviewed literature indicated that children with TD may exhibit

controlling behavior and may tend to play solitarily, none of the participants

attributed this behavior to TD.

The children’s play might influence their siblings as well; as they have to

handle the responsibility of having a sibling with special needs and deal with his or

her controlling behavior. They might have to sacrifice their play preferences because

of the child’s existence or at least do their preferred activities when the child is not

available. Mailloux & Burke (1997) have stated that children with TD have negative
 81

reactions to tactile input that hinders their social play and they may become

withdrawn or behave aggressively with other children. That was illustrated in three

of the participants’ children’s behaviors. The siblings dealt with the child’s negative

behavior in different ways, based on their level of understanding, age, and birth

order. Kay’s daughter’s younger brother dealt with his sister’s aggressiveness by

starting to develop negative behaviors and becoming aggressive in turn by pulling

her hair or biting her. The older siblings might avoid the child, being fearful of

hurting him or her. Dana said that her son was very sensitive to his sister’s needs; he

sensed that she did not like him to hug her and he consequently avoided that. Perhaps

because his sister did not give him chances to be affectionate with her, he appeared

to be very affectionate with their friends’ young children.

The participants indicated that their children might require special attention

in play, so the mothers needed to be very creative and energetic in order to engage

them in play, which in turn could be very exhausting.

The parents often needed to sacrifice their leisure time because of the child’s

needs. Dana said that she and her husband hardly take vacations nowadays. They did

not feel comfortable leaving their daughter with someone else. They did not trust

someone else’s ability to manage their daughter’s behaviors and engage her in

appropriate play situations.

In summary, the participants perceived their children to be happy, playful,

curious, and determined players. Their children generally had special play

preferences and styles. This finding appeared to be significant in the field of studying
 82

the play of children with TD. The reviewed literature emphasized the negative and

maladaptive behaviors that the child may exhibit as a consequence of exposure to

tactile input. There is paucity in research that describes the positive play qualities

that the child with TD may possess.

Despite the fact that the children were described by their parents to be happy

players, they tended to play alone and tended to exhibit control over other children in

social play situations. This in turn influenced their engagement in social play, and

raised concerns about the trajectory of their social lives.

The findings of the study indicated that the time that the child spent in play

influenced the family’s schedule and daily routines. The child’s condition and needs,

including his needs in play, influenced the parents’ leisure time and consequently

their relationships. Moreover, the child’s play styles and preferences influenced his

siblings. If the siblings were older than the child they either had to understand his or

her issues and deal with them maturely, or give the parents a hard time handling the

fights between them. If the sibling was younger, he or she might start to imitate the

child’s negative behaviors. In both situations, this increased the demands on the

parents.

The Family’s Qualities

All of the participants in the study were mothers, and each of them had many

duties and responsibilities. They indicated that they do their best to help their

children have happy lives. The participants indicated that they understood their

children’s needs and they tried to help them get through their conditions safely. In
 83

almost all of the cases, the participant appeared to be the person in charge of the

family and the household needs, even if she worked. This in turn influenced the

child’s play, because the mothers had other responsibilities and duties that made it

hard for them to spend the adequate time to play with their children.

The parents’ shared understanding and cooperation was critical in increasing

the child’s opportunities to play, and decreasing the demands on the mother. One

participant’s husband worked long hours, but provided extensive help on the

weekends. Nora, the mother of two children with special needs, said “I live for my

weekends” because her husband was energetic and was very creative in engaging his

children in play. During the time that her husband played with the children, she felt

that she could have time to relax for a couple of hours. In contrast, Dana said that her

husband did not understand his daughter’s condition. He might ask her to force her

daughter to eat types of food that she does not like, and he also did not try to engage

his daughter in play. Despite the fact that she gave him ideas, if she left her daughter

with him, within a few minutes, she might hear her crying because he did not have

the ability to keep her engaged in play. Dana did not blame her husband verbally for

not being interactive with his daughter, but it was clear in her voice and facial

expressions that she would love to see him more understanding and helpful. In

Sandy’s family the role of the father was not clear, but it was evident that the mother

was the person in charge and the one who took care of the children and the house

even though she worked full time. Sandy commented that she had to take her son or

his sibling whenever she goes out in order to decrease the demands on the father, just
 84

in case that they might get into their typical fights. Kay was a single mother who

had to take care of two children, and she felt obliged to use her mother’s help.

Despite the fact that she did not like her mother’s approach with the children, her

resources were limited, so she had to tolerate her.

The parents’ cooperation and shared understanding of the child’s condition

appeared to have an important influence on relieving the mother from feelings of

being lonely while taking care of the children and in offering different play styles

and opportunities to the child. Unfortunately, only one of the participants expressed

that there is shared understanding and cooperation between her and the child’s father.

This may be an indication of the fathers’ decreased level of involvement in the

children’s needs which raises the need for further research to explore this

phenomenon.

The presence of siblings often meant increased duties and responsibilities on

the parents, especially if the sibling had special needs. Sometimes the presence of an

understanding older sibling was considered an asset from the mother’s perspective.

Dana considered her older son as a very big asset in her daughter’s play because he

helped his mother and he was very sensitive to his sister’s needs. Kay thought that

her younger child was too little to understand his sister’s challenges, and he needed

lots of attention himself because he was so wild and this attention was taking from

time that needed to be devoted to his sisters.

In summary, the parents’ shared understanding and cooperation helped the

parents themselves and the child. While the parents’ tight schedules decreased the
 85

play opportunities with the child and the family meetings in general, at the same

time, the child’s special needs in play increased the demands on the parents and

siblings and might deprive their siblings from getting the adequate attention that they

needed from the parents. This finding indicated that not only the symptoms of TD

influence the child’s play, but that the parents’ and siblings’ understanding and

cooperation make a big contribution in helping the child have happy play. At the

same time, the child’s play styles also influence the family’s lifestyle and routines.

The reciprocity of the relationship between these two factors is highly evident in the

developed theory.

Extended Family Members’ Qualities

The understanding and cooperation of extended family members appeared to

be another important resource for parents of children with TD. The extended family

members of the participants in the study had special qualities including level of

understanding, age, generation, cultural background, and level of sympathy and

desire to help the family. When the extended family members show understanding,

sympathy, and cooperation, these qualities help the parents by relieving them from

unwanted criticism and advice, and offering opportunities to take care of the child.

Moreover, these qualities may expose the child to different play opportunities and

styles, and social encounters. However, when the extended family members are old

and/or have physical challenges and when they are “self centric”, as described by

some of the participants, they increase the physical and psychological demands on

the parents and deprive the child from play opportunities with people other than the
 86

direct family members. The cultural differences between the two sides of the family

appeared to decrease the channels of communication between the two parties and the

possibility of enhancing higher level of understanding of the child’s condition on the

part of the extended family members.

The other family members, who are about the parents’ age, either were

overwhelmed with their life or they lived far away. Nora reasoned that the decreased

tendency of the extended family members to help might be considered part of the

characteristics of daily life in the United States where everyone is busy with their

own concerns.

In summary, the developed theory indicates that extended family members’

understanding, sympathy, and cooperation might help the family by decreasing the

demands on the parents and by offering interesting play opportunities to the child.

The Physical, spatiotemporal, and social environment

Zemke and Clark (1996) have stated that play is a kind of occupation that is

embedded in people’s lives and shaped by their contexts. It was implicit in all of the

participants’ responses that they perceived the social, spatiotemporal, and physical

environment to have an influence on the child’s play.

All of the participants believed that having very tight schedules decreased

their opportunities to play with their children. Moreover, when the child went to

school, he or she had many assignments and homework and that also decreased the

child’s opportunities to play. This finding supports Burke’s (1996) statement that

being overwhelmed with therapeutic needs, medical intervention, and educational

 87

priorities, children with special needs may be deprived of their right to play. Play for

this group and their families may become a secondary or even absent occupation

from the family and the child’s schedule.

Children with TD exhibited different reactions to tactile input in different

environments. Dana perceived her daughter to behave differently in response to

tactile play in different environments. She commented that her daughter played with

soap in the bathtub, but not in a dry area. While Kay said that her daughter wanted to

control, the way she responds if she lost control at home was different from the way

she reacted when she lost control at school or in the park. At home, she might

become aggressive with her brother, but at school or in the park she might withdraw

or stew, but she did not become aggressive. Moreover, Kay was totally surprised at

her daughter’s behavior with the children at school. In the classroom she was

completely withdrawn but she played with the same children in the yard after the

school time.

All of the participants commented that the availability of space, toys, and a

physically and socially stimulating environment assisted the child in play. All of

them mentioned that making themselves available as much as they could to the child,

the presence of a cooperative and understanding sibling and, or husband helped the

child in play. In a study utilizing extended observations and interviews of preschool

children in a child care center, environmental and caregivers’ characteristics that

enhance or inhibit play were shown to be as important as the inherent characteristics

of the child. In this study, environmental characteristics that affected playfulness

 88

were the presence of a variety of toys and objects, provision of novelty, and multiple

opportunities (Knox, 1996).

In summary, the physical, spatiotemporal, and social environment influenced

the child’s play in many ways. The participants perceived the availability of

developmentally appropriate toys, space, and physically and socially stimulating

environment to be assets in their child’s play. This supports Knox’s (1996) statement

that, children’s play is usually intensely affected by the presence or absence of other

people or animals, the physical setting, and the availability of toys or other objects.

On the other hand, the participants believed that the tight schedule most

American families are obligated to live under, decreased the opportunities that the

parents had to play with their children or to have downtime for themselves.

People in the Community’s Level of Understanding

It was implied from the participants’ responses that being hurt by the

community’s attitudes towards the child and responding to that by avoiding

opportunities for being around other children might deprive their children from the

needed play opportunities with their typically developing peers. Dana commented

that there is lack of awareness in the community about sensory processing problems

and consequently people appeared to be surprised and critical of the child’s behavior.

Responding to superfluous verbal and nonverbal judgmental expressions, she

decided to decrease interaction with people who have typically developing children

and she started to gravitate gradually to develop relationships with people who have

children with special needs. Even though she felt bad about having to make this
 89

adjustment, she thought that this was healthier for her daughter. Dana did not think

that avoiding contact with the people in the community would deprive her daughter

from play opportunities with typically developing children. She believed that her

daughter got adequate play opportunities at school and at home. While Kay did not

make any adjustments based on the comments that she heard from the parents at the

school about her daughter, she felt hurt, but she did not try to respond to them in any

way. While Nora commented that she was self contained and that she did not let

these comments influence her.

In summary, the participants believed that people in the community appear to

not be aware enough of sensory processing problems. Without having any

background about the problem, they might give unsolicited comments or advice that

may hurt the parents. This consequently might lead the parents to avoid interaction

with people who have typically developing children and do not show an adequate

level of understanding and sympathy. This in turn might decrease the child’s

opportunities to interact and play with typically developing children.

The services that the Child Receives

The range of services that the participants’ children receive was variable. All

of them received sensory integration services, and some of them received other

services like social training services, and speech therapy services. Knox, (1993) and

Bundy, (1993) indicated that occupational therapists use play in practice as a primary

method for assessment and intervention. Kay supported that statement by saying that

having many services did not decrease her daughter’s opportunities to play, because
 90

all of her services were about play and play is used in her therapy as means and ends.

The parents of the toddlers believed that the presence of their children in the early

intervention program exposed them to different play opportunities with other

children. It helped also in helping them develop tolerance to the textures that they

didn’t like.

Kay believed that the social training service that her daughter received helped

her in developing back and forth reciprocal play skills. Nora, Sandy, and Dana

mentioned that their children started to develop tolerance to the textures that they

didn’t like.

In summary, the parents were not exactly clear about the particular influence

of the services that their children received on their play, but they all agreed that these

services were all about play and that they offered good play opportunities for their

children and that sensory integration intervention helped their children to develop

tolerance to certain textures.

Conclusions and Implications for Practice and Research

This study was designed to formulate a grounded theory of the factors that

influence the play of children with TD from the parents’ perspective. The study

concluded that the participants perceive many factors to have an influence on the

play of their children. A grounded theory was formulated that represents the

relationships among six main factors that emerged from the data. Those factors

included the child’s qualities; the family’s qualities; the extended family members’

qualities; the physical, spatiotemporal, and social environments; the community’s

 91

understanding of sensory problems; and the services that the child receives. The

relationship between the child’s qualities and the family’s qualities is viewed as

reciprocal, as each one seems to influence, and is influenced by, the other. These are

the two central factors, and they may relate to the other factors with varying degrees

of influence. The relationship between the two central child-family factors and the

surrounding external factors is unidirectional, from the peripheral environment for

example, to the family and/or the child. The surrounding factors therefore influence

the family and the child’s play.

Analysis of the parents’ perceptions of the factors that influence their

children’s play may provide a valuable strategy for developing a comprehensive

view of the kinds of behaviors and activities that are most important for children in

play given their particular life situation. This in turn may help occupational therapists

develop individualized intervention plans. In order to do that, occupational therapists

need to utilize unstructured observations in the child’s real environments when they

evaluate the child’s play. Moreover, they need to develop standardized tests that

address all of the factors that contribute to the developed theory.

The findings of this study indicated that a lack of shared understanding

between the parents about the child’s condition might lead to parental inconsistency

or conflicts in dealing with the child’s behavior. It may also increase the demands on

the mother, and add a layer of stress and tension to family life. It also revealed that

sometimes one parent acknowledges the child’s special needs and challenges in play,

while the other is completely oblivious of these needs and challenges. To facilitate
 92

shared understanding and cooperation between the parents; occupational therapists

need to educate both parents about the child’s condition. They may organize

individual family meetings and meetings between families of children with TD in

order to give them opportunities to share their stories with each other and exchange

knowledge. This may also help them to share their feelings in a safe and accepting

place.

There was an apparently very limited level of understanding about sensory

processing problems in the community as well. Because of that, it is the occupational

therapists’ responsibility to develop strategies to spread awareness in the community

about this group of children. They may need to take part in the media and conduct

programs that present information about sensory integration problems and their

influences on the child’s play. Spreading awareness in the community may at least

help parents avoid unwanted judgments, advice, and stares from people in the

community. Moreover, when the adults become aware of the condition, they may

seek intervention early on if their children struggle with sensory integration

problems.

Occupational therapists need to conduct workshops at schools utilizing

puppetry and role playing to increase the children’s awareness in order to facilitate

the child with TD integration in the community. Moreover, educating people

beginning with their childhood may help us to end up with adults who are educated

about the condition.

 93

Based on the findings of this study, I recommend conducting researches

that further investigate all of the aforementioned factors. It is important to survey the

general public’s understanding of the sensory processing problems utilizing

quantitative research design. The results of these kinds of studies may help

occupational therapists to develop appropriate strategies that are targeted towards

different populations’ levels of understanding to increase awareness about sensory

processing problems.

Considering that direct family members, including parents and siblings, and

extended family members’ feelings, and attitudes towards living with a child with

TD may influence his or her play, qualitative research design could be employed to

explore their feelings and attitudes. The findings of these studies may help in gaining

a holistic view of the influence of the child’s TD on direct and extended family

members and their reaction to that.

 94

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Appendices

Appendix 1
Letter to Eligible Participants
You are invited to take part in a study about “Parents’ Perceptions about the Factors
that Influence the Play of Children with Tactile Defensiveness”. This study will be
conducted by a student in the Masters program at the Occupational Science and
Occupational Therapy Department in the University of Southern California as her
master’s thesis research. The purpose of the study is to investigate the factors that
may enhance or hinder the play of children with tactile defensiveness from the
parents’ perspectives.
The purpose of this letter is to inquire your participation in the study. Your
participation in the study may help therapists further understand the factors that
influence the play of children with tactile defensiveness and thus may benefit them to
develop individualized interventions in the future.

If you decide to be part of the study, you will be asked to participate in an individual
informal interview about your perceptions of your child’s play, and the factors that
influence the play of your child. A sample of the developed questions for this
particular study is attached to this letter. You may choose where and when you
would like to be interviewed. The interview will last for 60-90 minutes. If you agree,
the researcher will tape record the interview so that she can have record of what you
have said. She may also take notes during out the interview, however, your real name
and the name of your child and other family members will not be recorded in writing
or on tape. Both the recording and her notes will be confidential. Only her research
advisor and the faculty committee will have access to this information. All of the
information from the interview(s) will be private. Your real name will not be used in
the study. All of your identifying information will be disguised.

Your participation in the study is voluntary; you do not have to be in the study if you
do not want to. Even if you decide to participate, you can withdraw at anytime and
leave the study.
If you have any questions about the study, you can contact the researcher (Khawlah
Abulfeilat) at 323-373-6455
If you decide to participate in the study, you can call the researcher at the same
number.
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Appendix 2

Sample Interview Questions

Child’s pseudonym: Interviewee’s pseudonym:

Child’s age Interviewee’s relationship to child:

Child’s gender: Interviewee’s education:

1. When and where does your child usually play?

Weekdays:

Weekends:

Special days:

2. How does your child usually play with objects, toys, and materials?

3. Does your child usually prefer to play alone, or with other children?

4. How does your child usually play with others when at home, and for how

long a time?

5. How does your child usually play with others when outside the home, and

for how long a time?

6. What does your child love to do when playing?

7. What does your child do well in play? What skills does he or she

demonstrate when playing?

8. What does your child show interest in, when playing?

9. In what kinds of situations is your child at his or her best, when playing?
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a. What do you think brings out the best in your child’s play?

b. What kinds of interactions with objects or people seem best?

10. With what does your child have difficulty, when playing?

11. What does your child seem to avoid or dislike when playing?

a. with toys, objects, and materials

b. with people

12. In what kinds of play situations does your child become anxious or upset?

a. Tell me a story about one of two times that this happened.

b. What do you think disturbs him or her in these kinds of situations?

c. In such situations, is there anything that you, or someone else, can do

to help your child return to happy play? What calms him down or

helps him return to playing?

d. In such situations, what are the triggers that seem to make your child

become more distressed?

13. In what ways do your child’s patterns of play affect other family

members?

a. Daily routines (waking up, mealtimes, getting ready for work/school,

etc.)

b. Social and emotional encounters

c. Overall family lifestyle

14. In what ways do other family members seem to affect your child’s play?

a. Social interactions
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b. Play during household work

c. Opportunities to play with objects and materials

d. Furniture and room arrangement

15. What would you like to see your child doing in play, in the future?
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Appendix 3

Participants’ Information Sheet

Research Proposal Entitled:

Parents’ Perceptions about the Factors that Influence the Play of Children with
Tactile Defensiveness

Principal Researcher: Khawlah Abulfeilat

Department of Occupational Science
and Occupational Therapy
University of Southern California
Tel: 323-373-6455

Research Advisor: Diane Parham, PhD, OTR/L

University of Southern California
1540 Alcazar Street, CHP 133
Los Angeles, CA 90033
Tel: (323) 442-2879
Purpose of the Study:
You are invited to take part in a study about the parents’ perceptions about the
factors that influence the play of children with tactile defensiveness. Parents who live
with their child usually know better than anyone else what their child likes to do in
play, what he or she avoids, and what seems to be helpful in the child’s play.
Moreover, the child affects the family’s daily habits and routines. At the same time,
the family’s interactions with the child influence the child’s daily patterns of play.
Because children with tactile defensiveness may have strong preferences and
avoidances of certain types of play, a better understanding of their behavior may be
obtained by interviewing their parents. Understanding their play from the parents’
perspective will help therapists devise interventions that are geared towards serving
the child within his or her particular family context.

Procedures of the Study:

You have been invited to participate in this study because your child’s therapist has
identified your child as having tactile defensiveness, a condition in which the child
strongly avoids or over-reacts to touch sensations. If you decide to be part of the
study, you will be asked to participate in an individual informal interview about the
factors that influence the play of your child with tactile defensiveness. You may
choose where and when you would like to be interviewed. The interview will last for
60-90 minutes. If you agree, I will audiotape record the interview so that I can have
record of what we have said. I may also take notes during out the interview. Both the
 104

tape recording and my notes will be confidential. Only my research advisor and the
faculty committee will have access to this information. Your real name, and the
name of your child, will not be recorded. Instead, pseudonyms (fake names) will be
used to protect your privacy.

Risks:
For some people, being interviewed can feel uncomfortable. Other people are not
bothered by it. If you are ever uncomfortable, you can let me know and we can skip
the question that caused discomfort, or at your request we will stop the interview.

Benefits:
You may receive no direct benefit while in study. However, your participation may
help us further understand the factors that influence the play of children with tactile
defensiveness and thus may benefit therapists to develop more effect interventions in
the future.

Confidentiality:
All of the information from the interview(s) will be confidential. Your real name will
not be used in the study, and no identifying information will be recorded by the
researcher. All of the recordings and notes will be kept confidential. The only people
that will see this information will be my research advisor and the faculty committee.
The study could be published or presented as a research paper at a professional
meeting, but no real names or other identifying information will be presented.

Withdrawal and Agreement:

Your participation in the study is voluntary; you do not have to be in the study if you
do not want to. If you decide to participate, you can withdraw at anytime and leave
the study.

“I have personally explained the research to the participant and answered all
questions. I believe that he or she understands the information described in the
Participants’ Information Sheet.”

Name of Researcher Signature Date