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1 Infants & Young Children Vol. 20, No. 3, pp. 192–201 c Copyright © | Lippincott Williams & Wilkins 2007 Wolters Kluwer Health “Let Me Just Tell You What I Do All Day ... ” The Family Story at the Center of Intervention Research and Practice Lucinda P. Bernheimer, PhD; Thomas S. Weisner, PhD Professionals who ask parents about everyday life with a child with disabilities can plan and im- plement interventions that will better support the family’s daily routine. No intervention will have an impact if it cannot find a slot in the daily routines of an organization, family, or individual. We followed 102 families with children with disabilities for 15 years, listening to their descriptions of their daily lives. A major theme running through all the stories was accommodation—changes made or intentionally not made to the family’s daily routine of activities due, at least in part, to their child with disabilities. Accommodations are usually adaptations to everyday routines, not re- sponses to stress; are responsive to how children impact parents’ daily routine, not to children’s test scores; are related to parents’ differing goals and values; do not fit a single script or model for what is good or bad parenting; and predict family sustainability of daily routines, rather than child outcomes. Accommodations can and do change—so interventions can indeed find their places. The practitioner participates in this “conversation” between the social structural constraints and opportunities of families and communities, the beliefs and values of parents, and the valuable Key words: , daily routines , family-centered contributions of the intervention. accommodation practice Professionals kept asking me what my “needs” ucation Program [HCEEP] conference on Parent- were. I didn’t know what to say, I finally told them, Professional Partnerships, reported in Bernheimer, “Look, I’m not sure what you’re talking about. So Gallimore, and Kaufman, 1993, p. 267) let me just tell you what happens from the time I AMILY-CENTERED practices in early inter- get up in the morning until I go to sleep at night. F vention have cast parents of children with Maybe that will help.”(Remark made by parent pan- disabilities in a new role. Once thought by re- elist at a 1989 Handicapped Children’s Early Ed- searchers and practitioners mainly as sources of information about their child’s develop- mental history, parents are now encouraged Author Affiliations: Department of Anthropology, to identify goals for themselves as well as for Center for Culture and Health, Jane & Terry Semel Institute for Neuroscience and Human Behavior, their child in the Individual Family Service University of California, Los Angeles. Plan (IFSP) process (Bernheimer & Keogh, This work was supported by grants HD19124, 1995). Family centeredness is more than the HD11944, and HD004612 (Fieldwork and Quali- solicitation of parent input, however. As char- tative Data Laboratory) from the National Institute acterized by Dunst (2002), it encompasses be- of Child Health and Human Development. We thank Robert B. Edgerton, Ronald Gallimore, Barbara Keogh, liefs and practices that (1) treat families with Kazuo Nihira, Catherine Matheson, and their col- dignity and respect; (2) include individual- leagues in UCLA’s Center for Culture and Health for ized, flexible, and responsive practices; (3) their support. We also thank M. Diane Klein, who read and commented on an earlier draft of the manuscript. encourage family choice regarding multiple aspects of program practices and interven- Corresponding Author: Lucinda P. Bernheimer, PhD, Center for Culture and Health, Jane & Terry Semel In- tion options; (4) consider parent-professional stitute for Neuroscience and Human Behavior, Univer- partnerships and collaboration as the context sity of California, Los Angeles, Box 62, Los Angeles, CA for family-program relations; and (5) provide 90024 ([email protected]). 192

2 193 The Family Story theory zeroes in on that pathway and its resources and supports necessary for families stepping-stones (activities and practices) as to raise their children in ways that produce among the most important influences in a optimal parent, child, and family outcomes. child’s and family’s life (Weisner, 2002, 2005). The successful implementation of family- These pathways are visible in the everyday centered practices requires new skills, as well routine, in which families use the resources as attitudes, on the part of professionals. In they have to adapt, exploit, counterbalance, the past decade, professionals have been ex- and react to many competing forces (Gal- horted to move from a perspective of family needs to one of family strengths and resources limore et al., 1989). For the families in Project CHILD, one of the “competing forces” was (Turnbull, Turbiville, & Turnbull, 2000). But their child with developmental delays of professionals who merely gather information uncertain etiology. about parents’ strengths and resources are un- are the Accommodations intentional adjustments made by families to likely to get sufficient information to imple- sustain a daily routine. These include actions ment true family-centered practices. They will get far more useful and meaningful informa- taken (eg, try and eat dinner together as a tion from parents who tell them what they family) as well as actions not taken (eg, the do from the moment they get up in the morn- parent turns down the job because the hours ing to the time they go to bed. At the Univer- conflict with the child’s therapy sessions). In sity of California Los Angeles (UCLA), we have our work, we focus on accommodations that were due, at least in part, to the child with a been working for the past 15 years to encour- disability. age family members to “tell their story” about The concept of family accommodation their child and family adaptation, and include in that story a description of their daily rou- emerged from the analysis of the stories of 102 tines. This work, Project CHILD, has yielded Euro-American families who had a child with findings that we believe have implications for developmental delays. Children were aged be- research and for practice. tween 32 months and 55 months at the time Our work is guided by an ecocultural of entry; the mean IQ was 72.32. (For detailed (ecological information about the sample and its recruit- cultural) approach, reflecting + ment, see Gallimore et al., 1989.) the fact that families actively and proactively All families were visited by trained field- respond to the circumstances in which they live, and that they build and organize envi- workers who encouraged families to “tell their story” during a 2- to 3-hour semistruc- ronments that give meaning and direction to their lives (Bernheimer, Gallimore, & tured interview with the principal caretak- Weisner, 1990; Gallimore, Weisner, Kaufman, ers (nearly all mothers). Fieldworkers were & Bernheimer, 1989; Weisner, 2002). So- given specific topics to be covered on the ba- cialization for all children, not just those sis of the ecocultural domains that are likely to be important for family socialization pro- with disabilities, is the intentional design of posed by Weisner (1984). Interviewers were psychologically salient and socioculturally trained to use probes to ensure that equiva- meaningful environments for children. The lent information was obtained for all families daily routine consists of linked sequences (Gallimore, Weisner, Bernheimer, Guthrie, & of activities and the contexts that organize Nihira, 1993). The families’ stories and the in- those activities. Imagine the child and parent formation provided by the probes resulted in as on a developmental pathway in their lives, accounts of the families’ shared project for and imagine that the stepping-stones for development: the creation of a daily routine that path are the activities that are repeated, with variations, each day (getting up and that was sustainable given family resources; ready, driving to school, therapy, a bus ride, meaningful with respect to family goals, val- dinner time, TV watching, bedtime, going to ues, and beliefs; congruent with individual needs of all family members; and reasonably church, visiting grandparents). Ecocultural

3 194 I &Y OUNG C HILDREN /J ULY –S EPTEMBER 2007 NFANTS a Accommodation domains with definitions and examples Table 1. Domain Definition with example Family subsistence Hours worked; flexibility of work schedule; adequacy of and satisfaction with financial resources; career vs job orientation. Mother stayed home because child ”needed” her; later went back to work to afford speech therapy. Availability of and eligibility for services. Sources of transportation; Services amount of parent involvement required. Parents each take time from work to make trips to doctor. Safety of locks and accessibility of play area; alterations in home Home/neighborhood safety and (installation of locks, fences for safety, choice of specific neighborhood). convenience Move to larger house to accommodate child’s wheelchair. Domestic workload Amount of work and persons available to do it; amount of time spent by different family members. Mother puts less priority on house and housework, higher priority on working with child. Childcare tasks Complexity of childcare tasks; extraordinary childcare demands (medical or behavioral problems); number and availability of caregivers. Child’s older sisters provide care; no help outside family circle. Child playgroups Children with disabilities vs typically developing children; amount of parent supervision; role of siblings as playmates. Mother started playgroup for child in neighborhood. Amount of shared decision making regarding child with delays; degree to Marital roles which childcare and household tasks shared. Parents sleep separately for 6 months due to child’s sleeping problems. Social support Availability and use of formal (church, parent groups) and informal (friend, relatives) sources of support; costs of using support. Mother lives rent-free with grandparents; grandfather helps with child. Amount of involvement with child with delays; amount of emotional Father’s role support provided. Father takes over on weekends as has long working hours during week. Parent information Reliance on professional vs nonprofessional sources; amount of time and effort spent accessing information. Father’s former girlfriend speech therapist; she helps family access services at her clinic. a Adapted from Gallimore et al. (1993) and Bernheimer and Keogh (1995). modation activity related to the child with predictable (Weisner, Matheson, Coots, & delays; 3, 4, or 5 indicated evidence of mod- Bernheimer, 2005). erate accommodation; and 6, 7, 8 indicated The 10 accommodation domains, with high accommodation, or a dominant theme definitions and examples, are presented in of accommodation related to the child with Ta bl e 1 . delays. Reliability of coding was established After each interview, fieldworkers coded by independent “blind” ratings of transcribed each domain for the of the activity intensity audio interview for 13 families, randomly using a scale of 0–8. Zero to 2 indicated that selected. The overall average was 82% simple there was little or no evidence of accom-

4 The Family Story 195 Among the Project CHILD parents, one sin- rater agreement, within one adjacent scale gle mother switched to a less stressful job, al- point. The quantitative scores for intensity of though it meant giving up her career. In an- accommodation allowed us to examine the other family, a father who worked close to relationship between accommodation and home came home very day at lunchtime to selected child and family characteristics. In give the mother some respite. addition, fieldworkers wrote cues derived from the interview material for each of the do- Accommodations are related to child mains. Additional details about scoring the do- ‘‘hassle,’’ not to child test scores mains and the reliability of the coding may be found in the study of Gallimore et al. (1993). Intensity of accommodation was not We visited families when their children were related to Gesell test scores, or to the Com- aged 3, 7, 11, 13, and 16. This report will munication and Daily Living subscales of the focus on our findings when the children Vineland (Gallimore et al., 1993). In other were 3. words, test scores are not directly driving what families “do” in response to having a child with developmental delays. More salient SUMMARY OF FINDINGS to families was the “hassle” level of the child, similar to the “caregiver strain” described Accommodations usually occur in by Brannan and Heflinger (2002). “Hassle” response to mundane circumstances of was a term frequently used by parents in our everyday life and are not necessarily interviews, and was used to organize many responses to stress parents’ stories about their daily routine and Accommodations are not necessarily signs activities and about the types and intensity of underlying distress and trouble. Gallimore, of their accommodations. We capitalized Bernheimer, and Weisner (1999) reviewed the on this, and fieldworkers developed a sys- literature on families adapting to childhood tematic rating of hassle on a scale from 0 disability and concluded that sustaining a daily to 9 (Gallimore et al., 1993). Hassle was not routine is a major family function, one that is simply child problems; parents might report distinguishable from coping with stress. They that a child had a problem (eg, behavior, noted, however, that the literature examin- speech, retardation) but it was not a hassle ing family stress often includes descriptions in that it did not have an impact on the of accommodations made to sustain the fam- family’s daily routine and accommodations. ily’s daily routine. Examples included keep- Parents reported 6 different types of hassle: ing a protected space clean for the ventilation behavioral (eg, frequent tantrums); medical system in homes with technology-dependent (eg, unusual care demands); communicative children (Bradley, Parette, & VanBiervliet, (eg, nonverbal); social appropriacy (eg, tire- 1995), reliance on grandparents for help with some overtures); activity rate (eg, extremely domestic workload and childcare (Leyser, active); responsiveness (eg, ignores, does not 1994), and maintaining social support net- respond to others). works (Sloper, Knussen, Turner, & Cunning- Parents who had children who were high ham, 1991). Other investigators emphasizing hassle reported more accommodations. For the distinction between sustaining a daily rou- example, one family’s accommodations were tine and coping with stress include Scorgie, related to the behavior of a child who re- Wilgosh, and McDonald (1999), and Brannan quired constant monitoring. When he was 3, and Heflinger (2002). Scorgie et al. (1999) his mother commented: “Our house is set up differentiate coping with stress and manage- around Michael. We still have a gate in here ment strategies. Management strategies, like and there’s a smaller area for him and he accommodations, are used day-in and day- can function better, and it isn’t that he’s ever out to enable family life to run smoothly. been destructive, it’s just that he can’t control

5 EPTEMBER 196 HILDREN /J ULY –S C 2007 I NFANTS &Y OUNG commodating to child hassles were not as ac- himself” (Keogh, Bernheimer, Gallimore, & Weisner, 1998). tive in accommodations in the domains of so- Several other investigators have identified cial support or child playgroups. a relationship between the child’s impact on Accommodations are shaped by cultural the daily routine and family activity. Diamond and family values and goals and Kontos (2004) examined the relationship between the developmental needs of toddlers Family daily routines depend, to a large ex- with delays and families’ resources and ac- tent, on cultural and family values and goals commodations. Their findings indicated that (Gallimore et al., 1989, 1993; Kellegrew, 2000; the number and types of family accommoda- Weisner, 1999). Families of children with dis- tions were related to their child’s develop- abilities may find it easier to maintain a hec- mental needs. In a study of childcare patterns tic schedule of driving the child to a va- for families of preschool children with disabil- riety of community activities if they have ities, parents who cited special needs as a rea- strong “normalization” values; parents with son for keeping their children out of formal strong familistic values, on the other hand, childcare had children with lower self-help will have trouble sustaining a daily routine skills than parents who did not indicate that that is driven primarily by the demands of special needs were an issue (Booth-LaForce & their high-pressure careers (Gallimore, Bern- Kelly, 2004). Said differently, parents of the heimer, et al., 1999). It is not surprising, then, children with low self-help skills were using that accommodations are only moderately re- informal care (relatives, neighbors) or keep- lated to SES and maternal education. Values ing the child at home. Just as we found for ac- and goals related to maternal employment (ca- commodations in Project CHILD, the higher reer track vs job only) had stronger associa- and lower self-help skills groups did not dif- tions with accommodation activities than did fer in diagnoses, or in mental or motor de- SES or income (Gallimore et al., 1993). Our velopment test scores. In a study examin- job/career and SES variables included total ing the relationship between parents’ work family income and the Hollingshead SES as and children with developmental disabilities well as 2 other variables: mother’s employ- (Freedman, Litchfield, & Warfield, 1995), the ment (full, part, unemployed, and temporarily authors reported accommodations similar to unemployed) and mother’s description of her those reported in Project CHILD: parents quit- employment (career-minded/employed; a job ting jobs, delaying return to work, work- only/no plans to quit; only a job, and hopes ing part-time because appropriate affordable to quit; and homemaker). The mother’s de- childcare was not available, changing work scription of her employment reflected her val- schedules to accommodate the child’s needs. ues and expectations regarding employment Families who reported making more accom- outside the home, not only what she was do- modations had children with severe medi- ing at that time about work and income. (An cal or behavioral conditions requiring special identical father variable was not assessed be- monitoring and care. Similar findings were re- cause of lack of variance: fathers virtually all ported by Bernheimer et al. (1993). worked.) As we expected, sources of informa- At age 3, 75% of the families were scored tion about the disability, role of father/spouse, as engaging in moderate- or high-intensity marital roles, and accessibility to services all accommodations in child care, sources of were accommodations that were associated information, and support; 30% to 40% of fam- with mother’s employment and career trajec- ilies were scored as moderate or high in sub- tories, in addition to the need for the mother sistence, home/neighborhood, and domestic to work for financial reasons. workload. The most frequent accommoda- Family values and goals for the child with tions to high hassle were in the areas of child- delays often drove accommodations in the do- care, services, and subsistence. Families ac- main of child playgroups. For example, one

6 The Family Story 197 family strongly valued “good behavior” for ables and its fit with parents’ overall project, 1 their 2 / which is the sustainability of the family rou- -year-old daughter. Because she was 2 prone to tantrums they avoided certain ac- tine. The “goodness”of accommodations over time depends on their long-term outcomes for tivities, for example, birthday parties, going all family members, including, but not limited to the park. Another mother, who was deter- to, the child with delays (Gallimore, Keogh, mined that her son be placed in general edu- et al., 1999). If the overall family project is cation classes when he turned 5, went out of her way to expose him to typically develop- more sustainable over time, this should ben- ing peers. When he was only 18 months old, efit all family members, including the child with disabilities. she joined a mother-toddler group with 2-year- olds so that he might be “stimulated.” Accommodations are not related to Accommodations are neither positive child outcome nor negative Just as accommodations are neither positive Is working at a job the father does not nor negative a priori, the intensity of accom- really like but which has stable medical in- modations is not related to a “better”child out- surance while another job does not, “good”? come. Keogh, Garnier, Bernheimer, and Gal- Is moving to another apartment and dealing limore (2000) used path-analytic techniques with all the associated disruptions because to compare the fit of child-driven and transac- early intervention services seem better there, tional models. Children’s status in cognitive, “good”? Every accommodation has costs as personal-social, behavior competencies and well as benefits to each individual in the family problems, and “hassle”domains were assessed (Gallimore, Keogh, & Bernheimer, 1999). As at child ages 3, 7, and 11. Results indicated examples, the frequent use of older siblings that the longitudinal relationships between for childcare might be positive for the child children’s cognitive and daily living compe- and parents, but have a negative impact on tencies and family accommodation were best siblings; time spent organizing play dates with explained by a child-driven model. The lower typically developing peers might be positive the child’s competence at age 3, the more for the child but have a negative impact on the intense the family’s accommodations at age mother’s workload (Gallimore, Keogh, et al., 7, suggesting that families made accommoda- 1999). Parents of children with disabilities, tions and adaptations in response to the char- like all parents, must balance their personal acteristics and limitations of their children. roles and responsibilities: parent, spouse, em- There is no reason to believe that one or ployer/employee (Scorgie et al., 1999). There the other type of accommodation produces was no one accommodation “menu” for suc- a better child outcome, given that the ac- cess, since, among other reasons, family re- commodations we studied were not patholog- sources, goals, conflicts, and stability varied; ical and well within the normative range of what might be an accommodation that fit well American family practices (Gallimore et al., for one family would not fit for another. Par- 1993). ents interviewed by Scorgie et al. were di- A caveat: The lack of a relationship between vided over the usefulness of connecting with family accommodation and child outcome other parents of children with disabilities, or should not be construed as indicating that of relying on extended family members or the the daily routines of these families did not church for support. Similarly, while gathering contain any everyday learning opportunities. information was important to parents, several Recall that actions taken and actions not respondents commented that much of the in- taken could both be scored on the high end formation they received was of limited value. of the accommodation scale. The parents The valence of any accommodation must be who kept their child away from the park and determined by its correlation with other vari- birthday parties and the mother who joined a

7 2007 198 HILDREN /J ULY –S EPTEMBER C &Y NFANTS I OUNG capture the meaning of each rating through toddler group for 2-year-olds when her son was 18 months old, both scored in the high the cue or reason provided for the ratings based on conversations with parents. Thus range of accommodation. Our focus was on the accommodations made to create a the cues from parent conversations, or rea- sustainable daily routine for the family, one sons for making a certain rating, are as much a finding, or data to be used regarding the fam- that was congruent with family values and ily or child, as the ratings themselves. Statisti- goals, and not on the identification of specific learning opportunities within that routine. cal analyses of ratings are then mapped back on to the qualitative data from cues and other Knowledge of family accommodations and notes (Weisner, Coots, Bernheimer, & Arzu- their impact on the daily routine allows the early interventionist to locate and capitalize biaga, 1997). We developed a database sys- upon those learning opportunities. tem, EthnoNotes, specifically for this purpose (Lieber, Weisner, & Presley, 2003). There is only one study to date that has di- IMPLICATIONS FOR RESEARCH rectly tested the efficacy of our interview fo- cused on family routines and accommodation from wisdom “Even basic received to assist intervention practice. Moes and Frea academia may be at odds with family (2002) conducted a multiple baseline design members’ way of making sense of their study of the use of ecocultural family context worlds” (Singer, 2002, p. 149). Families’ information in the functional communication stories offer a window into the way in which training of preschool children with autism, families make sense of their worlds. We agree and found that consideration of family con- with Ferguson (2002) that family research text improved goodness of fit of the interven- often uses research constructs and measures tions and both the stability and durability of re- specifically designed to fit the categories of ductions in challenging behaviors of children the model being tested, for example, research with autism. on family stress. Ferguson cites the need to Finally, intensity of accommodation as a collect less structured descriptions of family family unit level of analysis is a valuable ad- life but instead to explore how well the dition to measures of family outcomes in model fits when families generate the terms the evaluation of early intervention programs. and categories in their own narratives. In What are the accommodations to the daily our case, families’ descriptions of different routine that families make because of partic- kinds of child hassles proved invaluable to ipating in early intervention services, for ex- our exploration of the types and intensity of ample (Bailey et al., 1998)? In evaluating the accommodations families used to create their family outcomes of early intervention, family daily routines. accommodation may be used as a confound Gathering stories through the use of as well as an outcome: that is, was the out- semistructured interviews did not restrict us come due to early intervention, or to accom- to qualitative data alone. The accommodation modations made by the family in part because domains were used to provide a framework of the intervention, although not part of the for gathering information; each accommoda- intervention protocol (Bailey, Aytch, Odom, tion domain was then given a quantitative Symons, & Wolery, 1999)? Our own work in- score on a 9-point scale. Yet researchers who dicates that child outcome (as an individual only have scores to work with are faced with child measure) is not related to accommo- the nagging question, What does a “3” mean? dation. However, there is a relationship be- How does a family who scores a “3” on a mea- tween family accommodation and life satisfac- sure of life satisfaction actually differ from a tion, family well-being, and sustainability of family who scores a “5” on the same measure that family routine (Weisner et al., 2005). Our in their activities, daily routines, and beliefs? findings suggest the need to focus on family The gathering of family stories allowed us to

8 The Family Story 199 impacts along with child impacts, not only Family stories focused on accommodations one or the other. provide home visitors with multiple oppor- tunities for identifying slots in the daily rou- tine that contain embedded learning oppor- IMPLICATIONS FOR PRACTICE tunities. Information gleaned from families’ stories makes the “individual” in the IFSP a Well before the era of family-centered meaningful construct (Bernheimer & Keogh, practices, Featherstone (1981) issued a chal- 1995) and makes it more feasible to imple- lenge to professionals who serve parents in ment family-centered practices as described our clock-driven, time-scarce contemporary by Dunst (2002) and Mannan, Summers, Turn- world: bull, and Poston (2006). It can also make a valuable contribution to the transition pro- Where is that fifteen minutes [to carry out the in- cess, providing a more continuous experience tervention plan] going to come from? What am I supposed to give up? Taking the kids to the park? as families and children move from Part C to Reading a bedtime story to my eldest? Washing the Part B services (M. Ballard-Rosa, oral commu- breakfast dishes? Sorting the laundry? Grading stu- nication, September 9, 2005). dents’ papers? Because there is no time that hasn’t Other literature on developing interven- been spoken for, and for every fifteen-minute activ- tions also supports consideration of the ity that is added, one has to be taken away. (p. 78, daily routine and accommodations. Dunst and quoted in Gallimore, Bernheimer, et al., 1999) colleagues (Dunst, Bruder, Trivette, Hamby, Raab, & Mclean, 2001; Dunst, Bruder, Triv- If there is one message for practitioners ette, & Hamby, 2006; Dunst, Hamby, Triv- from our parents and from our longitudinal ette, Raab, & Bruder, 2000) have argued that studies, it is that no intervention, no matter knowledge of family accommodation is crit- how well designed or implemented, will have ical for identifying and building upon every- an impact if it cannot find a slot in the daily day natural learning opportunities. Additional routines of an organization, family, or indi- examples include Roper and Dunst (2003) re- vidual. The intervention (the information and garding communication intervention; Woods practices that make it up) must fit into the ex- and Wetherby (2003) regarding intervention isting beliefs and practices already in place. for infants and toddlers at risk for autism spec- The accommodations that parents make in trum disorders; Tisot and Thurman (2002) on their daily routines show that family routines using behavior setting theory to define nat- and practices can and do change—that inter- ural settings and McWilliam’s (1992, 2001) ventions can indeed find their places. The routines-based approach to family-centered practitioner participates in this “conversation” intervention planning. between the social structural constraints and We recognize that the current zeitgeist, in- opportunities of families and communities, , is focused on No Child Left Behind cluding the beliefs and values of parents, and the valu- child outcomes, particularly those related to able contributions of the intervention. academic achievement, and that this focus ex- The data on our 3-year-olds were collected tends to increasingly younger children. An ex- in 1987–1988, well before the era of family- clusive focus on child outcomes, however, is centered practices and service delivery in nat- not in the best interests of early intervention- ural environments. Parents were still driving ists, or the children and families they serve. to clinics for therapies, and the majority of Regarding home-based services, for example. children in programs were in segregated early McWilliam (2001) has observed that many intervention settings. When they entered into home-based approaches are little more than the study, most were in the process of tran- clinical sessions dumped onto the living room sitioning to Part B services, and families had floor. Both McWilliam (2001) and Edelman never participated in IFSPs. Nevertheless, our (2004) remind us that what happens between findings do speak to contemporary practice.

9 200 NFANTS C HILDREN /J ULY –S EPTEMBER 2007 I &Y OUNG cult about obtaining this type of information. home visits has a critical impact on children’s Telling their story comes much more naturally learning. While the home visitor is obligated to parents, and is less intrusive, than talking to use his or her disability-related expertise in about their “needs” or stress, or being asked developing interventions, without knowledge only to circle numbers on a questionnaire or and understanding of the family’s daily life, the fill in blanks on a form. All that one has to efficacy of these interventions will be diluted. do is to ask what happens from the time they The field of early intervention has come a get up in the morning to the time they go to long way in the past 25 years. The recogni- bed at night, see the family world from that tion of the importance of the daily routine point of view, and integrate our growing gen- in planning interventions now plays a major eral research knowledge about daily routines role in supporting child and family-sensitive with the always-unique circumstances of each practices that are likely to be sustained over family. time. There is nothing mysterious or diffi- REFERENCES Bailey, D. B., Aytch, L. S., Odom, S. L., Symons, F., & Wol- drome, cerebral palsy, and developmental delay. Jour- Men- ery, M. (1999). Early intervention as we know it. , 253–265. nal of Early Intervention, 26 tal Retardation and Developmental Disabilities Re- Dunst, C. J. (2002). Family-centered practices: Birth search Review, 5 , 11–20. through high school. Journal of Special Education, Bailey, D. B., McWilliam, R. A., Darkes, L. A., Hebbeler, 36 , 139–147. K., Simeonsson, R. J., Spiker, D., et al. (1998). Family Dunst, C. J., Bruder, M. B., Trivette, C. M., & Hamby, D. outcomes in early intervention: A framework for pro- (2006). Everyday activity settings, natural learning Exceptional gram evaluation and efficacy research. environments, and early intervention practices. Jour- , 313–328. Children, 64 nal of Policy and Practice in Developmental Dis- Bernheimer, L. P., Gallimore, R., & Kaufman, S. Z. (1993). abilities, 3 , 3–10. Clinical child assessment in a family context: A Dunst, C. J., Bruder, M. B., Trivette, C. M., Hamby, D., four group typology of family experiences with Raab, M., & Mclean, M. (2001). Characteristics and Journal young children with developmental delays. consequences of everyday natural learning opportu- , 253–269. of Early Intervention, 17 nities. Topics in Early Childhood Special Education, Bernheimer, L. P., Gallimore, R., & Weisner, T. S. (1990). , 68–92. 21 Ecocultural theory as a context for the Individual Dunst, C. J., Hamby, D., Trivette, C. M., Raab, M., & Family Service Plan. Journal of Early Intervention, Bruder, M. B. (2000). Everyday family and community 14 , 219–233. life and children’s naturally occurring learning op- Bernheimer, L. P., & Keogh, B. K. (1995). Weaving inter- Journal of Early Intervention, 23 , 151– portunities. ventions into the fabric of everyday life: An approach 164. to family assessment. Topics in Early Childhood Spe- Edelman, L. (2004). Principles and strategies for family- cial Education, 15 , 415–433. centered home-based services. Resources and Con- Booth-LaForce, C., & Kelly, J. F. (2004). Childcare pat- , 1–6. nections, 3 terns and issues for families of preschool children . A difference in the family Featherstone, H. (1981). ,5– with disabilities. Infants and Young Children, 17 London: Penguin. 16. Ferguson, P. M. (2002). A place in the family: An histor- Bradley, R. H., Parette, H. P., & VanBiervliet, A. (1995). ical interpretation of research on parental reactions Families of young technology-dependent children Journal of Special to having a child with a disability. , and the social worker. Social Work in Pediatrics, 21 Education, 36 , 124–130. 23–37. Freedman, R. I., Litchfield, L. C., & Warfield, M. E. (1995). Brannan, A. M., & Heflinger, C. A. (2002). Distinguishing Balancing work and family: Perspectives of parents caregiver strain from psychological distress: Model- of children with developmental disabilities. Families ing the relationships among child, family, and care- in Society: The Journal of Contemporary Human Journal of Child and Family Studies, giver variables. Services, 76 , 507–514. 10 , 405–418. Gallimore, R., Bernheimer, L. P., & Weisner, T. S. (1999). Diamond, K. E., & Kontos, S. (2004). Families’ resources Family life is more than managing crisis: Broaden- and accommodations: Toddlers with Down syn- ing the agenda of research on families adapting to

10 The Family Story 201 childhood disability. In R. Gallimore, L. P. Bern- Roper, N., & Dunst, C. J. (2003). Communication inter- heimer, D. L. MacMillan, D. L. Speece, & S. Vaughn vention in natural learning environments: Guidelines (Eds.), Developmental perspectives on high in- for practice. , 215– Infants and Young Children, 16 (pp. 55–80). cidence handicapping conditions 226. Mahwah, NJ: Erlbaum. Scorgie, K., Wilgosh, L., & McDonald, L. (1999). Trans- Gallimore, R., Keogh, B. K., & Bernheimer, L. P. (1999). forming partnerships: Parent life management issues The nature and long-term implications of early de- when a child has mental retardation. Education and velopmental delays: A summary of evidence from Training in Mental Retardation and Developmen- two longitudinal studies. In L. Glidden (Ed.), Inter- , 395–405. tal Disabilities, 34 national review of mental retardation . (Vol. 22, pp. Singer, G. H. S. (2002). Suggestions for a pragmatic pro- 105–136). 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