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Focal Point School of Social Work

Fall 1995 Focal Point, Volume 09 Number 02

Portland State University. Regional Research Institute

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Recommended Citation Portland State University. Regional Research Institute, "Focal Point, Volume 09 Number 02" (1995). Focal Point. 14. https://pdxscholar.library.pdx.edu/ssw_focalpoint/14

This Book is brought to you for free and open access. It has been accepted for inclusion in Focal Point by an authorized administrator of PDXScholar. Please contact us if we can make this document more accessible: [email protected]. A NATIONAL BULLETIN ON FAMILY SUPPORT & CHILDREN'S MENTAL HEALTH

FATHERS OF CHILDREN WITH SPECIAL NEEDS GRANDPARENTS &

en are liness. Great GRANDCHILDREN M increas­ strain may WITH SPECIAL NEEDS: ingly discover­ be placed ing the many upon the A UNIQUE joys of active marriage involvement in and the ex­ RELATIONSHIP their children's tended fam­ lives. The spe­ ily. A man he importance of grandparents in cial bond be­ must push T our society is becoming increas­ tween fa ther past his de­ ingly apparent. The number of grand­ and child pro­ nial and de­ parents is on the rise due to length­ duces measur­ velop new ened lifespans, multiple marriages able, positive paths of in­ and increased longevity. With these effects in regards to a child's self-es­ volvement in the child's life. He will changes comes a longer period of teem, gender identity, intellectual need to learn appropriate means for grandparent/grandchild association growth, curiosity and social skills. communicating and playing with his and greater potential for grandparents Current literature increaSingly por­ child who may receive sensory stimu­ to take on more active roles in the trays dads as caretakers, supportive, lation and movement quite differently lives of their grandchildren (2,13, 14, sensitive and caring. However, this than a child who has no disabilities. 16, 22, 24, 30). In many respects enhanced involvement can be sorely Further, fathers need places to work grandparents-regardless of whether tested when a child has a disability through their grief, anger, sorrow and there is a grandchild with a disability or chronic illness. The dreams fathers depression. in their family-are naturally poised have for their child's life, educational, Professional services generally to provide support to their grandchil­ athl etic and vocational achievements have been offered during a father's dren. In other contexts, the circum­ are threatened. working hours. Mothers-even stances of having a grandchild with a A man's ability to be an active part though often employed outside of the disability results in uniquely different of his child's life greatly depends upon home themselves-often become the family dynamiCS and perspectives that his previous learning. Men tradition­ resident "expert" about the child's alternatively define grandparents' ally have been taught to be provid­ personal, medical and educational role. Moreover, the depth of research ers, problem-solvers, protectors, com­ needs. Unless the couple has strong, regarding grandparents of special petitors and controllers. They glory effective communication patterns, the needs children is far less than the pre­ in being self-sufficient, in charge, and father will likely fall increasingly be­ vailing literature regarding grandpar­ strong. A child with special needs of­ hind in his knowledge about the ents in general. Thus our exploration ten can defeat such roles and render child. Parent support programs, while of grandparental support for special a man depressed, weak, guilty, pow­ encouraging the involvement of needs grandchildren relies on litera­ erless-and very angry. By default a couples, are typically made up of ture that syntheSizes information con­ mother may be conscripted-unwill­ women. The few men who do attend cerning grandparents of children with ingly and unwittingly-into being the often feel uncomfortable and out of and without disabilities. child's full-time caretaker. Similarly, place. The workplace offers little en­ moms also often become the family's couragement. Many men find it awk­ The Evolution of Present "deSignated worrier." ward to share personal concerns with Grandparenting -Roles. In many re­ Fathers of children with speCial their peers, and a child with special spects, expectations regarding needs perceive few support systems needs just cannot compete with suc­ grandparenting roles have followed in their environment; commonly they cess stories told around the luncheon predictable paths. The previous cul­ report feelings of isolation and lone- table. Continued on page 3 Continued on page 5

fAll 1995 t. fOC~ tI,.OINT

RESEARCH AND TRAINING CENTER Increasing Multicultural Center Associates Regional Research Institute for Human Parent Involvement Paul Adams, D.S.W., Leah Carouthers, Services James L. Mason, A.B.D., Solla Carrock, M.S., Iris Garvilles; Shad Portland State University Principal Investigator Jessen, Rae Anne Lyster, Jake Rouse, and P.O. Box 751 , Tracy Williams-Murphy, B.A., E. Darey Shell, B.S. Portland, Oregon 97207-0751 Project Manager (503) 725-4040 Evaluation of a KanWork Contract FOCAL POINT Barbara]. Friesen, Ph.D., Marilyn McManus, ].D., M.5.W., Editor NATIONAL CLEARINGHOUSE: Circulation: 25,000 (800) 628-1696 TDD (503) 725-4165 Co-Principal Investigator Nancy M. Koroloff, Ph.D., GRADUATE SCHOOL OF SOCIAL WORK Copyright © 1995 by Regional Research Co-PrinCipal Investigator Institute for Human Services. All rights James H. Ward, Ph.D., Dean Family Caregiver Panel Study reserved. Permission to reproduce REGIONAL RESEARCH INSTITUTE articles may be obtained by contacting Thomas P. McDonald, Ph.D., the editor. Principal Investigator FOR HUMAN SERVICES Nancy M. Koroloff, Ph.D., The Research and Training Center was es­ Support for Working Caregivers Interim Director tablished in 1984 with funding from the Eileen Brennan, Ph.D., Principal Investigator William H. Feyerherm, Ph.D., Co-Director National Institute on Disability and Reha­ Julie Rosenzweig, Ph.D., Senior Researcher NATIONAL ADVISORY COMMITTEE bilitation Research, U. S. Department of Family Participation in Residential • Richard Angell, M.D., Director of Education, in collaboration with the Cen­ Treatment Programs ter for Mental Health Services, Substance Training of Child Psychiatry, Barbara]. Friesen, Ph.D., Abuse and Mental Health Services Admin­ Department of Psychiatry, Oregon Co-Principal Investigator istration, U. S. Department of Health and Health Sciences University Jean M. Kruzich, Ph.D. , Human Services. The content of this publi­ • William Arroyo, M.D. , Assistant Co-Principal Investigator cation does not necessarily reflect the Director, Child/Adolescent Psychiatry; Kathryn H. Schultze, B.5. , Project Manager views or poliCies of the funding agencies. Los Angeles County-USC Medical Families and Therapeutic Center We invite our audience to submit Foster Parents as Partners • Marva Benjamin, M.5.W. , CASSP letters and comments. Pauline Jivanjee, Ph.D., Technical Assistance Center, Principal Investigator Georgetown University RESEARCH AND TRAINING CENTER • Ira A. Burnim, ].D., Legal Director, Barbaraj. Friesen, Ph.D., Center Director A Secondary Analysis of Engagement Bazelon Center for Mental Health Law', Nancy M. Komlon', Ph .0., Di rector ofRescarcl1 and Placement in Families Served by Washington, D.C. James L Mason, A.B.D., DirecLor ofTraining Multiple Systems • Cleopatra Caldwell, Ph.D., African­ Paul E. Koren, Ph.D., Research Met/1Odologist Kristine Nelson, Ph.D., Principal Investigator American Mental Health Research KayeJ Exo, M.5.W, CenterMClI1C1ger Center, University of Michigan, Institute National Evaluation of Statewide of Social Research Family Support Networks Effects of Family Participation in • Beth Dague, M.A., Stark County Services: A Panel Study Harold Briggs, Ph.D., Mental Health Board, Canton, Ohio Barbara]. Friesen, Ph.D., Co-Principal Investigator • Glenda Fine, Parents Involved Principal Investigator Nancy M. KoroloH, Ph.D., Network, Mental Health Association of Denise Stuntzner-Gibson, M.5.W., Co-Principal Investigator Southeast Pennsylvania Project Manager Family Participation in Professional • Paula Goldberg, PACER Center, Inc., Minneapolis, Minnesota Multicultural Perspectives of Education: An Intervention • Mary Hoyt, M.5.W ., Special Assistant Empowerment Barbara]. Friesen, Ph.D., Barbara A. Minton, Ph.D., Principal Investigator to the Administrator, Oregon Children's Principal Investigator Services Division Development of a Teacher Education • Jody Lubrecht, Ph.D., Mental Health An Evaluation of Responsive Curriculum Promoting Family Project Manager, Idaho Department of Academic Assessment for Students Partnerships for Inclusive Classrooms Health and Welfare with Severe Emotional Disabilities Amy Driscoll, Ed.D., Principal Investigator • Brenda Lyles, Ph.D., Deputy Assistant Mary Henning-Stout, Ph.D., Administrator, Mental Health and Principal Investigator A Model of Family Participation in Mental Retardation Authority of Harris Therapeutic Preschools for Children County, Houston, Texas Family-Centered Policy: Who Have Emotional Disorders • Phyllis Magrab, Ph.D., Director, Child A Study of FamilyMember Diane Pancoast, Ph.D., Principal Investiglltor Development Center, Georgetown Representation at the Policy Level Resource Service and National University Nancy M. Koroloff, Ph.D., • Larry Platt, M.D. , Public Health Principal Investigator Clearinghouse on Family Support and Children's Mental Health Consultant, Berkeley, California Marilyn C. McManus,].D., M.5W., • Betsey Poore, Student, Richmond, VA Project Manager Beverly A. Stephens, B.S., B.A., Information Resource Coordinator • Deify Petia Roach, Program Coordinator, Denise Schmit, Publications Coordinator Parents for Behaviorally Different Children, Albuquerque, New Mexico

VOlUMf• 9. NO .1 FATHERS OF CHILDREN WITH SPECIAL NEEDS Continued from page 1

Many men have been taught that children, learn how to feed them and feelings due to a fear of "losing con­ feelings are to be hidden. Painful understand the various federal and trol" or not being understood. They emotions may be camouflaged by ad­ state laws that protect children's may be afraid that any expression of dictive behavior (e.g., overwork or rights. Fathers must be given a chance their true feelings will place even abuse of alcohol or other substances) to learn these various skills. greater strain upon the family. Men and outward denial (''I'm just fine ," We must provide men with safe require safe settings in which they can "My son is doing great"). Yet, men settings in which they can identify grieve the losses associated with hav­ need to be encouraged to willingly and express their feelings. Unfortu­ ing a child with special needs as well engage in their children's lives in re­ nately, many men too often consider as to celebrate their child and family's sponsible, nurturing ways. In order their feelings-particularly their successes and joys. for this to happen fathers must be fears-as weaknesses. Men whose . It is important to value the differ­ given opportunities to explore their children have special needs are often ences between what fathers and moth­ feelings in supportive environments. flooded with emotion, yet, they may ers may bring to the parenting setting. Many men with special needs chil­ have "tuned-out" and fail to recognize For example, perhaps through his dren are discovering that they do not or understand their feelings. Fathers employment, the father may have need to be limited by stereotypes or father figures often hold back their highly-developed skills in navigating about what they should be. They have gained increased understanding about the importance of bonding with their . . RESOURCES FOR FATHERS children, have accepted the realities of the problems at hand, and become ORGANIZATION: National Fathers' Network active problem-solvers for their Kindering Center children's needs. Dale Loftis, the fa­ 16120 N.E. Eighth Street ther of two children with spina bifida Bellevue, Washington 98008-3937 and hydrocephalus states: (206) 747-4004 or (206) 284-2859 We don't have to pretend to be strong. We can admit that life does WRITTEN MATERIALS: hurt sometimes, that my child does Circles of Care and Understanding: Support Programs for Fathers of Children have some problems, that I have lost With Special Needs (1992). Author: James May, M.A., M.Ed. Available from that perfect child of my dreams. Hav­ the Association for the Care of Children's Health, 7910 Woodmont Avenue, ing admitted this, I am now free. Free Suite 300, Bethesda, Maryland 20814-3015; (301) 654-6549. (Monograph). to meet the challenges of tomorrow. Exceptional Parent. Editor: Stanley D. Klein, Ph.D. Includes "Fathers' Voices," Free to be excited about even the a regular column that focuses on fathers' experiences rearing children with smallest progress. Free to make those special needs. Available from Exceptional Parent, P.O. Box 3000, Depart­ adjustments necessary to give my son ment EP, Denville, New Jersey 07834; (800) 247-8080. (Magazine). the best family I can give, to be the Fathers ofChildren With Spe.cial Needs: New Horizons (1991). Author: James best dad I can be. May, M.A., M.Ed. Available from the Association for the Care of Children's Health (see address and telephone number above). (Monograph). STRATEGIES FOR INVOLVING FATHERS National Fathers' Network Newsletter. Editor: James May, M.A ., M.Ed. Avail­ There needs to be an attitude and able from National Fathers' Network. (Newsletter). a willingness to involve men as loving Uncommon Fathers: Reflections on Raising a Child With a Disability (1995) . supports for children with disabilities, Editor: Donald J. Meyer. Written by and for fathers whose children have even when it seems that they are dis­ special needs. Available from Woodbine House, Inc., Publisher, 6510 Bells interested. The men need not be the Mill Road, Bethesda, Maryland 20817; (800) 843-7323. (Book). children's biological or adoptive fa­ thers; they may be any men who emo­ VIDEOS: tionally touch a child's life including Enhancing Care Delivery for African-American Fathers and Children With stepfathers, grandfathers, uncles, Special Needs (In production. Scheduled for completion: December 1995). neighbors and friends. Producer: James May, M.A. , M.Ed. Available from National Fathers' Network. Expect a balance in the family Special Kids, Special Dads: Fathers of Children With Special Needs (1989) . where responsibilities and tasks are Producer: James May, M.A., M.Ed. Available from National Fathers' Network. shared. Men can advocate for their

fAll• 1995 bureaucracies or in construction work. Professionals working with BEACH CENTER ON FAMILIES AND DISABILITY families should promote these differ­ EXPLORES FATHER/CHILD RELATIONSHIPS ences-encourage the father to take a lead in negotiating the mental health AND THE DELIVERY OF SERVICES TO FATHERS system on behalf of the child and fam­ ily, or encourage the father to build he Beach Center on wh o have disabilities an adaptive device for his child's spe- I T Families and Dis­ were more likely to en­ cial needs. ability is continuing a gage in activities a t Let fathers know that it is okay to line of research begun home with their chil­ make mistakes-all family members two years ago to increase dren than they were to do. Neither fath ers nor mothers the responsiveness of take the children to ac­ should fe el pressured or embarrassed service delivery systems tivities outside of the about their parenting styles. Men to the priorities and pref­ home. They also ap­ need to expand their knowledge erences of fathers of chil­ peared to en gage in about children and actively partici­ dren who have disabili­ fewer verbal activities pate in childrearing. They should be ties. The overall goal of with their children if discouraged from settling into the old the research is to provide those children had a roles and routines with which they are information that will disability. Both groups most comfortable. help programs provide of fa thers reported Encourage men to learn nurturing family-centered services spending a great deal of parenting styles. Many fathers do not that are responsive to time wa tching televi­ have parenting styles that are highly both mothers and fathers. sion with their children. Again, these caretaking or self-disclosing-but The first study conducted by the observations can only be used to sug­ they can learn. Men need to talk with Beach Center, entitled Fathers' Rela­ gest further research and study. the ir own fathers and h eal o ld tionships With Their Child ren and A second ongoing study at the wounds, finish "old business," and Their Perceptions of Those Relation­ Beach Center addressing issues re­ listen to their fathers' stories about ships , asked fathers of children be­ lated to fathers of children who have growing up. Among others, the writ­ tween the ages of 5 and 9, who did disabilities is entitled Us ing Family­ ings of Robert Ely, Sam Keen and Kyle and did not have a disability, to re­ Centered Approaches in Providing Ser­ Pruett are invaluable in exploring port the time they spent in activities vices to Fath ers of Children in Early such concerns. with their children, the types of ac­ Childhood Prog ram s. In this study, in­ Children deserve the love and tivities they engaged in with their fants and toddlers who have disabili­ support of each of their parents. A key children and their ratings of their ties (Part H) programs, earl y child­ goal for family members and profes­ competence and their comfort with, hood s pec ial educa tion (Part B) sionals is to promote healing and their parenting skills. Eighty-six fa­ programs, Head Start programs, and growth-not isolation and despair. In thers from across the state of Kansas daycare programs are being surveyed his novel The Power and the Glory, participated in the study. in six states to identify strategies be­ Graham Greene wrote, "[T] here is Results from this investigation ing used to include fathers and other always one moment... when the door indicated that fathers assess their male family members. Fathers will be opens and lets the future in." As fami­ skills as parents Similarly and spend asked to validate these strategies af­ lies and professionals we need to fling similar amounts of time with their ter they have been identified. open the doors and support fathers children whether they have a child For additional information on ei­ in the most loving, supportive means with a disability or not. Fathers whose ther of these studies or on other re­ possible. children have a disability do spend search conducted at the Beach Cen­ somewhat more time in child care ter please contact Vicki Turbiville, JAMES MAY, M.A., tasks than do fathers whose children Ph.D., Projec t Director, Beach Center M.ED., Proj ect do not have a disability, but the dif­ on Families and Disability, 3111 Direc tor, National ferences between the two groups were Haworth Hall , University of Kansas, Fathers ' Network, not significant. Lawrence, Kansas 66045; voicefTDD: Kindering Center, In addition to the speCific findings (913) 864-7600; fax: (9 13) 864-7605; 16120 N.E. Eighth of the research, other trends were E-Mail: beach@dole. lal.ukans.edu. Street, Bellevue, WA noted that were not tested for statis­ The Beach Center particularly in­ 98008; (206) 747- James May tical Significance because of the small vites fathers who would like to par­ 4004 or (2 06) 284­ number of fathers included in the ticipate as a rater of strategies in the 2859;fax: (2 06) 747-1069 or (206) study. Some of these findings include second study to contact the project 284-9664. an observation that fathers of children director.

VD lUM(• g, NO .1 GRANDPARENTS &GRANDCHILDREN WITH SPECIAL NEEDS: A UNIQUE RELATIONSHIP Continued from page 1 tural roles of grandparents involved was that their perspective of what is studies have found grandfathers their exercise of more power and au­ beneficial to their grandchildren was choosing roles in which they offer thority than is currently popular. limited and distant. Past generations grandchildren "wisdom and exper­ Current grandparental roles appear to of grandparents drew from personal tise" over roles in which they are "im­ have their greatest effect (directly or experience and provided relevant in­ portant but distant" (9, 22). indirectly) on the emotional well-be­ formation about a society that Johnson (15) suggested three pri­ ing of grandchildren just because the changed very little. In contrast, soci­ mary factors that influence the con­ relationship exists (20). While grand­ ety today is far more future-oriented temporary role of grandparent. First, parents' roles are likely to vary de­ and people tend to often stereotype there is a wider structural separation pending on factors such as the devel- I grandparents' commentary as irrel­ between generations in our culture. opmental needs of the individual, evant or out of context. Furthermore, Second, there are few strong and ex­ family dynamics, and family resources grandparents themselves have specific pliCit expectations of obligations be­ (19) , control of these roles now are opinions regarding how they desire tween generations. Third, our society at the discretion of the grandparents their roles to be perceived. actively encourages personal freedom and carry much less responsibility (2, Many grandmothers neither like and independence at the expense of 7) . In essence, this change in "tradi­ nor fit the traditional image of a the extended family system. All three tional" roles of grandpa renting comes cookie-baking homemaker (17). In­ of these factors clearly come into play from a different role expectation by stead, they emphasized social and rec­ when conSidering grandparents of society. A norm of "non-interference" reational functions, preferring short­ children with speCial needs, but of­ has developed, which sanctions term, voluntary activities with ten in uniquely different ways. against independent grandparental grandchildren, such as a trip to a involvement in the lives of their chil­ museum, that were distinctly differ­ Grandparents and dren and grandchildren. Cherlin and ent from a parental role (1, 17, 22). Grandchildren With Special Needs Furstenberg (5) noted that this norm Most grandmothers chose interac­ What is the role of the grandpar­ was so strong that violating it was tions that were mutually fulfilling and ent when a child with a disabling con­ considered one of the worst sins that did not see grandparenting as their dition is born? According to Berger a grandparent could commit. Strom most important role in life (l7). and Fowles (4) all members of the (28) suggested that part of the rea­ Grandfathers in the past appeared as family experience some form of son why grandparents were out of passive, distant, and uninvolved fam­ trauma and all of the family'S existing touch with their roles as grandparents ily members (7, 16). More recent relationships are affected (10, 18,33). Parents, Siblings, and grandparents EDITOR'S NOTE experience feelings of shock and grief (23,25,32). Grandparents experience his issue of our newsletter focuses on traditionally underserved family a double shock of grieving their Tmembers of children with mental, emotional or behavioral disabilities. children's suffering and pain as well Fathers, siblings and grandparents (as well as aunts, uncles and close family as grieving the loss of their expecta­ friends) are often invisible players in the mental health s~rvices delivery tions of a healthy grandchild (23). In system. These individuals, too, need support as they struggle to cope with a cases where grandchildren have dis­ beloved child's disability. We have, perhaps, all been guilty of thinking first abilities, grandparents may experi­ about a child's mother when we think about the family of a child with a , ence added stress, depression, and mental health disorder. However, grandparents, Siblings and fathers, too, ambiguity concerning their roles (14), often experience tremendous sorrow about the child they have as well as as well as experience long term adjust­ grieve the loss of the child they had imagined they would have. As do moth­ ment to their "new" role as a grandpar­ ers, other family members often feel somehow blamed for the very fact of ent of a child with a disability (25). the child's disability. Families are not blamed for a family member's spina Historically, grandparents provide bifida, nor are they blamed for a family member's muscular dystrophy; why, some direct forms of help to grand­ then are they blamed for a family member's mental illness? We must recog­ children who do not have disabilities nize that family members struggle through the search for an accurate all through child care activities like baby­ diagnosis and the search for appropriate treatment. With these articles we sitting, providing transportation to offer suggestions for services targeted to grandparents, fathers and siblings and from school, caring for sick chil­ as well as first-person accounts by family members describing their experi­ dren while parents are at work, and ences with a child with a mental illness in the family. even assuming total responsibility in

fAll• 1995 I cases of child abandonment, parental middle-age activity, with levels of con­ Other than physical barriers such illness, or death (6, 7, 12, 21 ). But tact dropping, especially after age as proximity, the most Significant when there is a grandchild with a dis­ sixty-five 02,17,22,26). The influ­ mediating factor for relationships of ability, grandparents' involvement ence of age may be somewhat mis­ grandparents with grandchildren who becomes complicated by the fact that leading for another reason as well. do not have disabilities appears to be grandparents often lack support to Grandparent over 65 years of age are the grandparent's relationship with deal with their own grief and have not likely to have older children and their children and children-in-law been provided with the appropriate grandchildren who require less care (ll, 22, 27). Because the grandpar­ information and guidance to become and attention. Moreover, in the case ent role is often one that is mediated as actively involved as they would like of grandparents of children with spe­ by the grandchild and the parents of (9, 10, 31). cial needs, it is harder to make de­ the grandchild, it may be contrived Although research has included finitive conclusions regarding the ef­ and ambiguous 04, 16). grandfathers in some studies their fect of age, because the concept of Grandparents who successfully unique role in the family has gener­ support is much more functional than maintain or increase contact with ally been ignored. A variety of stud­ hands-on. Thus while it likely that their grandchildren are those who ies have focused solely on grandmoth­ older grandparents of children with maintain fri endly relations with the ers 0,11,12,14,16,17). Grandmothers disabilities will have less physical custodial parents. Successful grand­ have been found to provide direct contact as their age increases, this parents tend to maintain a non-judg­ help by playing the role of family his­ mental attitude about the disability tory elder. Activities in this area in­ and make themselves a resource to clude teaching family history and tra­ children and grandchildren (9). Yet dition, teaching native languages, it is also important that in develop­ taking grandchildren to church or ing a friendly, supportive relationship synagogue, and giving advice in reli­ with the custodial parent, grandpar­ gious and other matters (l,ll, ents do not "take over" (6), since the 12,14,16,17). adjustment of the grandchild may depend on having supportive, com­ Mediating Factors for petent parents (21) . It may be that the Grandparents' Involvement. extended family'S traditional style of There is widespread agreement in relating to one another is a powerful the literature about the importance of predictor of grandparent's support. geographic proximity and mobility in mediating grandparent/grandchild in­ Implications for Health teractions. Researchers have found and Mental Health Personnel. that proximity accounts for as much George (10) recommended a sup­ as 62% of the variance in number of port group that offered a forum to dis­ visits per year between grandparents cuss feelings, family communication, and grandchildren (5). Convenient does not preclude their ability and and ways by which grandparents can proximity may actually be a necessary desire to provide emotional or finan­ serve as therapeutiC agents for grand­ but not sufficient factor that serves to cial support (9 , 25). children with disabilities and their create a context in which the relation­ The effects of ethnicity and gen­ nuclear families. Gardner, et al. (9) ship can develop (8). Gardner, der have also been investigated. There recommended support programs to Scherman, Mobley, Brown, & Scutter is evidence to suggest that the grand­ empower grandparents as family sup­ (9) proposed that geographic distance parent role is more salient in some port providers, by providing them was a relevant variable when consid­ ethnic groups than in the dominant with opportunities to explore their ering the degree of grandparental in­ culture in this country (3 , 5, 19). roles, discuss their concerns, obtain volvement with grandchildren with Grandmothers did not seem to prefer desired information, be trained in in­ disabilities. Many other studies have a particular gender of grandchild in teractive and open communication also found that the amount of sup­ the only study that asked that ques­ techniques, and extend to grandpar­ portive contact increased as distance tion (2). However, in a unique study ents specific skills to provide support decreases 01, 22). Conversely, a ma­ that explored grandchildren's percep­ to their grandchildren in the educa­ jor cause of lost relationships with tions of the relationship, it was dis­ tional domain. In reality, support pro­ grandchildren is thought to be caused covered that male and female grand­ grams for grandparents are very sel­ by one party moving away (27). children had different desires for the dom available , and the main The age of grandparents is another relationship and interacted more with responsibility for helping grandpar­ mediating factor. Most researchers their same-sex grandparents during a ents will likely come from the efforts agree that grandparenting is mainly a crisis (24) . of the individual health profeSSional. ~------VOlUMf• 9, NO.2 If the professional is unable to create Conclusion. 2. Barranti, C. C. R. (1985). The grand­ support groups or programs-after Grandparents of children with dis­ parent/grandchild relationship: Family evaluating a grandparent's unique abilities have the potential to offer resources in an era of voluntary bonds. needs-the provider will have to support-not only to their grandchil­ Family Relations, 34, 343-352. 3. Barresi, C. M. (1987). Ethnic aging and function as a manager and direct dren-but also to their children. the life course. Ethnic Dimensions oj grandparents toward as many of the Grandparents express a desire to be­ Aging (pp. 18-34). New York: appropriate health resources/pro­ come more involved in therapeutic Springer Publishing Company. grams in the surrounding community and educational interventions target­ 4. Berger, M. 1St Fowlkes, M. A. (1980). as possible. ing their grandchildren. Examples of Family interventions project: A family In many cases, it may be helpful grandparen ts' assistance include network model for serving young for professionals to consider what grandparents visiting and helping handicapped children. Young Children, 51, 22-32. characterizes very healthy grandpar­ with daily activities, spending time 5. Cherlin, A. J. 1St Furstenberg, F F ent/grandchild relationships (as well with their grandchild, and providing (1985). The new American as factors that contribute to poor re­ financial support (9, 23). Gardner, et grandparent: A place in the Jamily, a lationships), and use skill training to al. (9) described grandparents of liJe apart. New York: Basic Books, Inc. foster development in areas that grandchildren with disabilities who 6. Commaile, ]. (1983). Divorce and the grandparents are amenable to change. occupied helping roles. They further child's status: The evolution in One example would be to teach reflected that grandparents exhibited France.Journal oJ Comparative Family Studies, 14,97-116. grandparents and parents to openly a dynamically active interest and com­ 7. Dell, P F 1St Appelbaum, A. S. (1977) negotiate their relationships with the mitment to providing support to their Trigenerational enmeshment: grandchild, so that the boundaries, children and their grandchildren with Unresolved ties of single-parents to desires, and expectations relating to disabilities. family of origin. American Journal oj the child are clearly understood by The contrast between being a Orthopsychiatry, 47, 52-59. both generations. grandparent of a child who has no 8. Doka, K.]. 1St Mertz, M. E. (1988). The meaning and significance of great­ Group training is an intervention disabilities versus being a grandpar­ grandparenthood. The Gerontologist, that might be useful for grandparents ent of a child with disabilities is not 28, 192-197. who are interested in potential ways clear cut. In our efforts to better un­ 9. Gardner,]. E. , Scherman, A., Mobley, to support their grandchildren. For derstand and predict the roles and D., Brown, P, 1St Schutter, M. (1994). parents, group training may also be support functions that grandparents Grandparent's beliefs regarding their an appropriate way to teach them how of speCial needs children occupy, it is role and relationship with special to make the most of grandparents' becoming more apparent that a fam­ needs grandchildren. Education and Treatment oj Children, 17, 185-196. willingness to be involved, without ily systems perspective (29) provides 10. George, ]. D. (1988). TherapeutiC taxing them too much. one of the more effective perspectives. intervention for grandparents and Another question pertains to why extended family of children with grandparents appear to effectively fos­ AVRAHAM SCHERMAN, PH.D., Professor of developmental delays. Mental ter the grandchild's relationship with Education and Counseling Psychology, Retardation, 26, 369-375. the parents, but when it comes to Department ofEducational Psychology, 11. Gladstone, ]. W. (1987). Factors their relationship with their own chil­ University of Oklahoma; E-Mail: associated with changes in visiting between grandmothers and dren they appear less assertive in de­ [email protected] grandchildren following an adults fining the parameters of this relation­ child's marriage breakdown. Canadian ship. This phenomenon is further JAMES E. GARDNER, PH.D., Associate Profes­ Journal on Aging, 6, 117-127. complicated by the fact that grand­ sor of Special Education, Dept. of Edu­ 12. Gladstone, ]. W. (1988). Perceived parents often lack support to deal cational Psychology, University ofOkla­ changes in grandmother-grandchild with their own grief and have not homa; E-Mail: jgardner®Uoknor.edu relations following a child's separation or divorce. The Gerontologist, 28, 66-72. been provided with the appropriate 13. Hadadian, A. 1St Rose, S. (1991). An information and guidance to become DEPARTMENT OF EDUCATIONAL PSYCHOLOGY, investigation of parents' attitudes and as actively involved as they would like UNIVERSITY OF OKLAHOMA, 820 Van Vleet the communication skills of their deaf (l0, 25,31). Oval, Room 301, Norman, Oklahoma children. American Annals oj the DeaJ, Helping professionals are encour­ 73019-0260; Telephone: (405) 325­ 136, 273-277. aged to explore these variables as they 5974; Fax: (405) 325-6655. 14. Johnson, C. L. (1983). A cultural help family members negotiate the analYSis of the grandmother. Research on Aging, 5, 547-568. grandparent/grandchild relationship. REFERENCES 15.Johnson, C. L. (1985). Grand- parenting They must be prepared to use skill 1. Ahrons, C. R. 1St Bowman, M. E. (1981). options in divorcing families: An training to foster development in ar­ Changes in family relationships anthropological perspective. In eas amenable to change, and use sup­ following divorce of adult child: Bengyson, V L. 1St Robertson, ]. F Grandmother's perceptions. Journal oj portive tactics in areas of liability. (Eds.), Grandparenthood, (81-96). Divorce, 5,49-68. Beverly Hills: Sage Publications .

fAll• 1995 16.Johnson, C. L. &: Barer, B. M. (1987). 22. Mathew, S. H., &: Sprey,]. (1984). The 50, 1104. Marital instability and the changing impact of divorce on parenthood: An 28. Strom, R. (1988). Intergenerational kinship networks of grandparents. exploratory study. The Gerontologist, learning and curriculum development. The Gerontologist, 27, 330-335. 24, 41-47. Educational Gerontology, 14, 165-181. 17. Johnson, C. L. , Klee, L. , &: Shmidt, 23. Murphy, L., &: Della Corte, S. (1990). 29. Turnbull, A. P. &: Turnbull, H. R. C. (1988) . Conception of parentage Focus on grandparents. Special Parenti (1990). Families, proJessionals, and and kinship among c hildren of Special Child, 6(2),2-9. excepti onality: A speCial partnership. divorce. American Anthropologist, 90, 24. Scherman, A., Goodrich, c. , Kelly, c. , New York, NY: Merrill. 136-144. Russell , T. , &: Javidi, A. (1988). 30. Uhlenberg, P. (1980). Dea th and the 18. Kazak, A. E. &: Marvin, R. S. (1984). Grandparents as a support system for family. Journal oj Family History, 5, Differences, diffic ulties, and children. Elementary School Guidance & 313-320. adaptation: Stress and social networks Counseling, 23, 16-22. 3 1. Vadasy, P. F (1987). Grandparents of in families with a handicapped child. 25. Scherman, A., Gardner, ].E., Brown, children with special needs: Supports Family Relations, 33, 67-77. P. , &: Schutter, M. (1995) . especiall y for grandparents. Children's 19. Kivett, V R. (1991). The grandparent­ Grandparents adjustment to Health Care, 16, 21-23. grandchild connection. Marriage and grandchildren with disabilities. 32. Vadasy, P. F, Fewell, R. R., Meyer, D.]., Family Review, 16,267-290. Educational Gerontology, 21, 261-273. &: Sc h eel, G. (1984). Siblings of 20. Kornhaber, A. &: Woodward, K. 26. Sprey, ]. &: Mathews, S. H. (1982). handicapped children: A developmental (1981 ). Grandparents/grandchildren: Contemporary grandparenthood: A perspective on family interacti ons. The vital connection. Garden City, New systemic transition. Annals oj th e Family Relations, 33, 155-167. York: Anchor Press/Doubleday. American Academy oj Political and 33. Waisbren , S. E. (1980). Parent's 21. Isaacs, M. B. &: Leon, G. H. (1986). Social Science, 464, 91-103. reactions after the birth of a Social networks, divorce, and 27. Starbuck, R. P. (1989). The loss of a developmentally disabled c hild. adjustment: A tale of three generations. grandparent through divorce. American Journal oj Mental DeJiciency, Journal oj Divorce, 9, 1-16. Dissertation Abstracts Int ernational, 84,345-351.

SIBLINGS OF CHILDREN WITH SPECIAL NEEDS PROGRAMS, SERVICES &CONSIDERATIONS rothers and sisters of chi! lings have far fewer opportunities for ics or sports; feelings of guilt about Bdren with special needs have con­ obtaining information than their par­ having caused the illness or disabil­ cerns that in many ways parallel their ents do. Written information about ity or for being spared the condition; parents' experience. But compared disabilities or chronic illnesses is not fe elings of resentment when the child with their parents, these brothers and often developed for young readers. with speCial needs becomes the focus sisters enjoy far fewer programs, ser­ Should sisters or brothers accompany of the family's attention or is permit­ vices and considerations- even their parents to a clinic visit or an In­ ted to engage in behavior unaccept­ though the Sibling relationship is fre­ dividualized Education Program able for other family members; and quently the longest lasting relation­ (IEP) or Individualized Family Ser­ concerns about their and their ship in the family. Through research vices Plan (IFSP) meeting, their ques­ sibling's future. and clinical literature, the concerns tions, thoughts or opinions are rarely Increasingly, the opportunities of brothers and sisters have been well­ solicited. many siblings experience by growing documented. The concerns include Sibling concerns may include over up with a brother or sister with spe­ feelings of loss and isolation when a identification (fearing that they also cial needs are also being acknowl­ parent's time and attention is con­ have the Siblings' condition); a per­ edged. These include inSight on the sumed by a sibling's disability or ill­ ceived pressure to achieve in academ­ human condition; maturity from suc­ ness. Siblings may feel "left out cessfully coping with a sib­ of the loop" when parents and lings' speCial needs; pride in service providers, wanting to their siblings' abilities; loyalty protect them from possible toward their Siblings and fami­ stress, do not share informa­ lies; and appreciation for their tion about a sibling's condition. own good health and families. They may feel isolated if they do not have opportunities to Creating Programs talk with peers who are expe­ Specifically for Sisters and riencing similar concerns. Brothers Although they frequently Like their parents, sisters and have a life-long need for infor­ brothers appreciate opportuni­ mation about the disability or ties to meet others who have illness and its implications, sib­ had similar experiences, dis­ o VOlU Mf 9, NO.1 cussing their common joys and con­ cerns and learning more about issues and services that affect their families. Understanding this, agencies are more ORGANIZATIONS: Siblings for Significant Change frequentl y creating programs de­ 105 East 22nd Street, Room 710 signed specifically for siblings by pro­ New York, New York 10010 viding some of the following : Telephone: (212) 420-0776 • To meet other siblings in a re­ Fax: (212) 677-0696 laxed , re crea tional setting. The Sibling Support Project chance to meet peers in a casual at­ Children's Hospital and Medical Center mosphere has several benefits. It can 4800 Sand Point Way, N.E. help reduce a sibling's sense of isola­ P.O . Box 5371 CL-09 tion. Participants quickly learn that Seattle, Washington 98105-0371 there are others who share the spe­ Telephone: (206) 368-4912 cial joys and challenges that they ex­ Fax: (206) 368-4816 perience. The casual atmosphere and I recreational activities promote infor­ BOOKS: mal sharing and friendships among Binkard, B., Goldberg, M. &. Goldberg, P. (1987). Brothers and Sisters Talk participants. The recreational setting With PACER. Publisher: Parent Advocacy Coalition for Educational Rights helps make the experience rewarding (PACER), 4826 Chicago Avenue South, Minneapolis, Minnesota 55417; If to attend. a brother or sister regards (612) 827-2966. any service aimed at siblings as yet another time demand associated with Klein, S.D. &. Schleifer, M.]. (1993) . It Isn't Fair! Siblings of Children with the child with special needs, he or she Disabilities. Publisher: Bergin &. Garvey, Greenwood Publishing Group, may find it hard to be receptive to the Inc., 88 Post Road, W, Box 5007, Westport, Connecticut 06881; (800) information presented. Sibling events 225-5800. should offer activities that are person­ Lobato, D.]. (1990). Brothers, Sisters, and SpeCial Needs: Information and ally satisfying for the participant, so Activities for Helping Young Siblings of Children with Chronic Illnesses that he or she is likely to attend in and Developmental Disabilities. Publisher: Paul H. Brookes Publishing the future. Company, P.O. Box 10624, Baltimore, Maryland 21285-0624; (800) 638­ • To discuss the joys and con­ 3775. cerns common to brothers and sisters Meyer, D.]. &. Vadasy, P.F (1994) . Sibshops: Workshops for Siblings ofChil­ of children with special needs. Sib­ dren with Special Needs. Publisher: Paul H. Brookes Publishing Company lings need opportunities, such as sib­ ling support groups, to n etwork. Meyer, D.]., Vadasy, P.F &. Fewell, R.R. (1985). Living with a Brother or Through these discussions, siblings Sister with Special Needs: A Book for Sibs . Publisher: University of Wash­ may realize that they have many com­ ington Press, P.O. Box 50096, Seattle, Washington 98145-5096; (800) 441­ mon concerns and experiences. These 4115. support systems can help decrease Powell, T.H ., &. Gallagher, P.A. (1992). Brothers & Sisters: A SpeCial Part of feelings of isolation and provide an Exceptional Families. Baltimore: Paul H. Brookes Publishing Company. opportunity for ongoing support. Smieja, L. , Thomas, N. &. Friesen, B. (1990). Brothers and Sisters of Chil­ • To learn how others handle situ­ dren With Disabilities. An Annotated Bibliography. Publisher: Research and ations commonly experienced by sib­ Training Center on Family Support and Children's Mental Health, Port­ lings of children with speCial needs. land State University, P.O . Box 751, Portland, Oregon 97207-0751; (503) Sisters and brothers of children with 725-4175. special needs routinely face problems thatare not experienced by other chil­ NEWSLETTERS: dren. Defending a Sibling from name­ calling, responding to questions from National Association of Sibling Programs (NASP) Newsletter. Published friends and strangers, and coping by the Sibling Support Project, Children's Hospital and Medical Center, with a lack of attention or exceedingly P.O. Box 5371 CL-09, Seattle, Washington 98105-0371; telephone: (206) high expectations from parents are 368-4912; fax: (206) 368-4816. only a few of the problems brothers Sibling Information Network Newsletter. Published by the A.]. Pappenikou and sisters may experience. Special Center on SpeCial Education and Rehabilitation, University of Connecti­ events for Siblings can offer children cut, 249 Glenbrook Road, Box U-64, Storrs, Connecticut 06269-2064; tele­ a broad array of solutions from which phone: (860) 486-4985; fax: (860) 486-5037. to choose.

fALL• 1995 • To learn more about the impli­ • Game: Push-Pin Soccer chronic illness. Guidelines for panel cations of their brothers' and sisters' • Discussion #2: Dear Aunt discussions can be prepared in ad­ special needs. Sisters and brothers Blabby vance to help facilitate meaningful need information to answer their own • Game: Triangle Tag discussion. Other methods to help questions as well as the questions of • Guest: Mental Health Therapist educate agency staff include video­ friends, classmates and strangers. Sib­ • Closing Activity: Sound Off tapes, books, and newsletters. lings want to know how the disabil- . Sibling support programs in this • Does the agency have a program ity or illness may affect their brother model were designed originally for specifically for brothers and sisters? or sister's life, schooling and future. children eight to thirteen years old, Programs for siblings-preschoolers, • To give parents and service pro­ but they can be adapted easily for school-age children, teens , and viders opportunities to learn more younger or older children. adults- are growing in number across about the common concerns of the the United States. Determine the siblings. Because parents and service Including Brothers and Sisters: A needs of families served in your local providers often are unaware of the Checklist for Agencies. community and develop sibling sup­ range of Sibling issues, activities can Here are a few considerations to port programs to meet identified be conducted to try to help them bet­ facilitate the inclusion of siblings in needs. ter understand "life as a sib." For ex­ planning and implementing famil y • Does the agency have brothers ample, a panel of young adult and support services. and sisters on the advisory board and adult Siblings might relate what they • Are Siblings included in the policies that reflect the importance of appreciated in their parents' treatment definition of "family? " Many educa­ including siblings? Reserving board of the children in their families and tional and health care agencies have seats for Siblings will give the board a also what they wish their parents had begun to embrace an expansive defi­ unique and important perspective and done differently. nition of families (e.g. , IFSPs, family­ indicate the agency's concern for sib­ centered care). However, providers lings. Developing policy based on the Sibshops may still need to be reminded that important roles played by brothers Sibshops, a program developed there is more to a family than the child and sisters will help assure that their by the Sibling Support Project, is a with special needs and his or her par­ concerns and contributions are a part national model that offers brothers ents. Organizations that use the word of the agency's commitment to families. and sisters of children with special "parent" when "family" or "family needs peer support and education member" is more appropriate send a Summary. through workshops as brief as two message to sisters, brothers, grandpar­ Acknowledging the contributions hours and as long as a weekend. ents and other family members that of brothers and sisters of children Typical Sibshop workshops are ap­ the organization is not for them. With with disabilities is an important step proximately four hours long, usu­ siblings and primary-caregiver grand­ toward recognizing the valuable role ally from 10:00 A.M. to 2:00 PM. parents assuming increasingly active they play in families. In addition to on Saturdays. Generally they are roles in the lives of people with dis­ recognition, siblings need informa­ held monthly or bimonthly. During abilities, we cannot afford to exclude tion, support, and the opportunity to these workshops, information and anyone. be children and to form relationships discussion activities are mixed with • Does the agency reach out to with other children who have similar lively recreational activities. These brothers and sisters? Parents and experiences. might include "New Games" de­ agency personnel should consider Signed to be unique, slightly off­ inviting (but not requiring) brothers DONALD J. MEYER, beat, and appealing to a wide range and sisters to attend informational, M.m, Director; Sib­ of abilities; cooking; and special IEP, IFSP, and transition planning I ling Support Pro­ guests, who may teach participants meetings and clinic visits. Siblings ject, Children's Hos­ mime or juggling. A workshop frequently have questions that can be pital and Medical schedule might look something like answered by service providers. Broth­ Center; 4800 Sand this: ers and sisters also have informed Point Way N.E., • Trickle-In Activity: Group opinions and perspectives and can P.O . Box 5371 CL- Donald Meyer Juggling make Significant contributions to the 09, Seattle, WA • Warm-Up Activity: Human child's team. 98105-0371; (206) 526-2000; fax: Bingo • Does the agency educate staff (2 06) 368-4816. • Discussion #1: Strengths and about issues facing young and adult Weaknesses brothers and sisters? A sibling panel A vers ion of thi s article was previously pub­ lished by the ARCH Nat ional Resource Cen­ is a valuable way for staff members to • Game: Stand Up! ter for Crisis Nurseries and Respite Care learn more about life as a brother or • Game: Sightless Sculpture Services and is reprinted with permission. • Lunch: Supernachos sister of a person with a disability or G) VO lU ME 9, NO .1 GRANDPARENTS: THE FORGOTTEN RESOURCE

roject Connect. Project Connect child's low self-esteem; (2) grandpar­ Pis a program of the Massachusetts ents were not interested in becoming Society for the Prevention of Cruelty involved because they did not feel that to Children (MSPCC). MSPCC is a it was their "job" having already private, non-profit, statewide child raised their own children; and (3) welfare agency, dedicated to protect­ some parents had difficulty asking ing and promoting the rights and their own parents for help as they well-being of children. Project Con­ believed it reflected poorly on their nect is deSigned to develop, imple­ parenting skills, and they did not ment and monitor specialized treat­ want to "bother" grandparents enjoy­ ment plans for children and ing their retirement years. adolescents who have severe emo­ Most of these parents had never tional disorders. Our mission is to really had an open discussion with provide the creation and coordination their parents about their need for sup­ of services necessary to keep these port and about what types of things children in their own homes, in their would be helpful in raising a child own schools, and in their own com­ with a mental or emotional disorder. munities. Project Connect is funded Although, in some families, this lack by a grant from the Massachusetts of communication seemed to reflect Department of Mental Health and a long-standing problem between the covers an area of twenty-six cities and mental, emotional or behavioral dis­ generations, it was clear that the towns south and west of Boston. orders. The discussion was very emo­ child's mental illness was the major Project Connect's philosophy em­ tional and seemed to be a topic about stressor in many relationships. Be­ braces the core values of the Child which everyone had strong feelings. cause the subject was a source of and Adolescent Service System Pro­ Responses ranged-on the one shame to some and a source of sad­ gram (CASSP), invites parents to be hand-to feeling that grandparents ness to all, it became one of those is­ equal partners in the treatment plan­ play an essential role in helping with sues that families tended to avoid­ ning process and focuses on the the parenting of the child to-on the thereby festering and creating larger strengths of the family and the child. other hand- expressing a strong de­ problems between the generations. As part of our ongoing efforts to make sire to keep the parents' and Like their sons and daughters, our program more responsive to the grandchildren's lives completely sepa­ grandparents grieved the loss of their needs and concerns of parents, rate from those of the grandparents idealized grandchild. Even where I Project Connect sponsored several due to a belief that involvement with families recognized and accepted the parent focus groups for the purpose grandparents only created more dif­ child's illness, grandparents seemed of hearing directly from parents what ficulty and chaos in their lives. Obvi­ reluctant to admit that a grandchild they though about Project Connect, ously, such definitive and disparate was "imperfect." Some grandparents and discovering what were the signifi­ feelings created a lively discussion. faulted their own child's parenting cant issues that parents felt affected What emerged was a clear indication skills as an explanation for the their goal of obtaining quality services that under certain circumstances grandchild's disability-thereby fur­ for their child and family. A consult­ grandparents can play a Significant ther alienating the generations. The ant from Boston's Judge Baker Tech­ role in providing supports to parents complicated dynamics ofparent-child nical Assistance Center for the Evalu­ who have a child with mental illness. interactions appear to become more ation of Children's Mental Health Project Connect has worked over this pronounced when the focus is on a Systems Change moderated the focus last year to identify what it takes for child who has mental, emotional or groups. The consultant solicited in­ this relationship to be a supportive behavioral problems. formation in response to a series of one. Other families were extremely open-ended questions that were de­ The parents who identified nega­ appreciative and grateful for the sup­ signed to stimulate people's thinking. tively with grandparents' involvement port that they received from their par­ cited three major reasons why it was ents in raising a child with severe Focus Groups. As it turned out, not helpful: (1) grandparents were emotional problems. The ingredients the major issue addressed in the fo­ not informed, did not understand the that appeared to make it possible for cus groups was the role that grand­ nature of the child's disability and this to happen were different from parents play in the life of these par­ therefore were critical and family to family, but we did note some ents and their children with serious unaccepting, which exacerbated the common characteristics of relation- G fAll 1995 ships that produced positive parent-child relationships as there is on behalf of their children and grand­ intergenerational support. often an expectation that parents will children. Parents Provide Clear Informa­ always be able to intuitively identify Discrete Tasks. Parents identified tion. The first characteristic identified the needs of their children. grandparents as helpful and support­ was the parent's ability to give clear Grandparents' Good Physical ive when their roles and tasks were directions to the grandparent about and Emotional Health. A second clearly defined. These parents did not the type of help the parent needed characteristic of positive and support­ flood or overwhelm grandparents from the grandparent. One of the sce­ ive families is the grandparent's good with responsibilities that were too narios that we have observed in the physical and emotional health. Indi­ physically or emotionally difficult to course of our work with families is viduals who do not feel very positive handle. More positive results seemed that many times an individual expects about their own situation clearly are to occur when the grandparents had someone else in the family to respond not able to extend themselves to oth­ small defined tasks (i.e. , transporting to their needs despite the fact that the ers. Given their advancing age, this a child to a therapy session) that individual has never directly commu­ is an important consideration when could be successfully accomplished nicated his or her wishes to the other assessing the level of supportive in­ and completed in a deSignated period individual. This is particularly true in volvement possible for grandparents of time. This also helped to lessen the role confusion that occurs in some situations where the grandparent be­ GRANDPARENT-TO-GRANDPARENT PROGRAM comes almost a co-parent and the par­ ent loses or relinqUishes authority. innesota's PACER Center (formally' known as the Parent Advocacy Grandparents as Guardians of Coalition for Educational· Rights) launched its Grandparent-to­ M Family Rituals. We learned, too, that Grandparent Program in 1991. The goals of the Grandparent-to-Grand­ parents believe it is important for parent Program are: grandparents to retain as many of the • To support, inform and empower grandparents to act as effective advo­ family'S traditional rituals as possible. cates for their grandchildren with speCial needs; Thus, while a grandparent may par­ • To meet other grandparents of children with special needs and share ticipate in recording behaviors on a joy, concerns, grief, and common interests; behavior chart, that grandparent re­ • To learn helpful strategies that enable grandparents to be helpful to mains an honored guest at birthday their children and families, and to encourage communication between parties and other family celebrations. generations; While grandparents strive to under­ • To provide support, both physical and emotional, to their children­ stand the abilities and the limitations the parents of children with disabilities-thus providing and enhanc­ of the child with a mental or emo­ ing the grandparenting role; and tional disorder they are also busy • To learn about special programs and services available for children with passing on the family's lore. disabilities and families. Grandparents' Understanding of The Grandparent-to-Grandparent Program provides a variety of re­ the Child's Disability. A final obser­ sources to families including workshops and support groups, telephone vation is that parents who were able support and a grandparent column in PACER's newsletter. The workshops to educate grandparents about the offer grandparents opportunities to discuss the impact of the child's dis­ nature of their child's disorder were ability on the entire family, and to obtain up-to-date information about more apt to have a productive rela­ the child's special problems and needs. The support group meetings offer tionship. What seemed important in grandparents the opportunity to meet other grandparents who share their this regard was how the education concerns and experiences. was presented. Generally, like any ef­ Experienced and trained grandparents are available to offer mutual sup­ fort to educate people, it is important port to other grandparents through a telephone support program. These to time the intervention when the in­ individuals receive training in communication skills, are introduced to dividual is most receptive to learning. community resources and learn procedures for making referrals. The Parents related that they were most Grandparent-to-Grandparent Program also matches trained grandparents effective in educating grandparents with others wishing ongoing telephone support. closely following an event or situa­ PACER's newsletter includes a grandparents' column. The column serves tion that the grandparents had ob­ as a source of information on topics of interest to grandparents and addi­ served but did not understand. There­ tionally serves as a forum for sharing grandparents' concerns. fore , when a six-year-old child with For additional information on PACER Center's Grandparent-to-Grand­ attention deficit hyperactivity disor­ parent Program contact: JaneJohnson, PACER Center, Inc., 4826 Chicago der (ADHD) behaves impulsively and Avenue South, Minneapolis, Minnesota 55417-1098; Voice &: TDD: (612) recklessly at a birthday party, that is a 827-2966; Fax: (612) 827-3065. good time to explain the brain's dys­ 49 VOlUME 9, NO.1 function and the role of medica tion the child's disability as it is benefi cial One of the best stories about to grandparents. to the relationship when grandparents grandparent support came from a re­ Treatment Planning Process. as well as parents start distinguish­ tired grandfather who took his eight From our experience in the treatment ing between what a child cannot do year old grandson fishing on a regu­ planning process, we have discovered versus what a child will not do. lar basis. This child is diagnosed with that grandparents can play an impor­ Grandparents provide a variety of attention defi cit hyperactivity disor­ tant role in being part of a natural sup­ supports to parents that may appear der. Amazingly, the child developed port system for the parents and child minimal, yet are very helpful to an the patience to learn to fish despite with a mental, emotional or behav­ overwhelmed parent. We know of in­ reports from frustrated teachers that ioral disability. An initial step at stances in which each of the follow­ the child was unable to focus on Project Connect is to explore the na­ ' ing actions by a grandparent proved school work. ture of the parent(s)' and child's rela­ I very important to a parent: transport­ tionships with grandparents and ing a child to a medical or counsel­ In summary, our experience has other relatives. If there is interest and ing appointment, taking Siblings to taught us to be aware of the very im­ it is feasible to involve grandparents, various activities, babY-Sitting while portant role that grandparents can we invite grandparents to attend the a parent attends a school meeting, and play in the lives of grandchildren with trea tment planning meeting. At this making dinner during a particularly mental, emotional or behavioral dis­ meeting, we include grandparents as difficult event (such as a child's hos­ orders and their families. Where pos­ an important part of the child's life pitalization). sible, our goal is to understand the and solicit their input and ideas about Again, we have found that it is nature of that relationship and mobi­ the child's strengths and their help in important that the grandparent's role lize it as a positive force on behalf of identifying services they think may be be well-defined, within their capabili­ the entire family. helpful. We always find something in ties and interests, and something that the treatment plan with which the the parent has identified as being CHARLES SULLIVAN, M.S.W., Director, grandparent can help or, if the grand­ helpful and not intrusive. As with any Proj ec t Connect, Massachusetts parents are already helping, we for­ good treatment planning process, it Society for the Prevention ofCruelty mally recognize and encourage their is necessary to keep in mind that each to Children , 1515 Hancock Street, contributions to the family. This family is unique and the opportuni­ Quincy, MA 02169; telephone: (6 17) meeting also provides an opportunity ties for proViding support are highly 376-7100;fax: (617) 376-7109. to offer informal information about individualized.

ONE GRANDMOTHER'S EXPERIENCES

randdaughter. I have two won­ didn't want to be a meddlesome tentative diagnoses. First it was de­ G derful grandchildren, Megan, mother. It may have been easier for pression and then bipolar disorder. age 21, and her brother Greg, age 24. me to observe the changes in my Finally, she received a definite diag­ As a child, Megan was a delicious little granddaughter as I didn't see her ev­ nosis of schizophrenia. She has been one. I remember saying, "Megan, ery day. seeing mental health profeSSionals don't ever lose that lovely laugh you My nursing school education con­ since the age of 12 and did not re­ have." Her laugh just caught one up­ trols my responses to situations. I ceive a definite diagnosis until the age you just enjoyed it-period! 1 often never panic, but I confess I was very of 15. stayed with the children or they anxious about Megan. I am 88 years For six or seven years multiple stayed with me when their parents old and the oldest of five children. crises occurred each and every day. we nt out of town. I had many oppor­ That has a lot to do, too, with the way We went from Megan attending a tunities to study Megan and I noticed I respond to crises. I have had mul­ regular high school, to a day treat­ that her laugh just disappeared. tiple family crises fall to me to handle ment program, to her running away One day my daughter called and in my lifetime and one just learns to from home repeatedly, to her place­ said, "Mother, I've made an appoint­ get through them. When I was rais­ ment in a mental health group home. ment to take Megan to see a psycholo­ ing my own children and again with Finally, my daughter was successful gist." 1 immediately said, "Oh, I am my grandchildren, whenever there is in getting Megan's psychiatrist to so relieved." I had been watching a family crisis, I don't get noisy. I be­ place her on clozapine-a medication Megan and I knew that she was de­ come quieter than ever. I am think­ that has greatl y improved my pressed. Something was altering her ing very, very hard. I think that is al­ granddaughter'S functioning-and disposition altogether, but I had not ways the best move to make in a crisis. now Megan again lives with her par­ lsa id anything to my daughter as I Megan went through a variety of ents. Unfortunately, the side effects of G fAll 1995 ~------~~...... ~--- I her medication and Megan's continu­ seven years old. Other people, "the My support of my son-in-law has ing dependence on her parents are a television, her Walkman-we think really occurred more through the sup­ continuing source of stress in the that she used each of these as distrac­ port I give my daughter. I think it is

household. tions over the years to avoid the just so much harder for men to ac­ I There were two very troubling voices. Megan thought everyone cept what is going on in their fami­ characteristics about Megan that I had heard voices. She had nothing to go lies. They are so accustomed to mak­ noticed for years. She did not seem on to understand that hearing voices ing a statement, giving a direction, to learn from the unpleasant conse­ is abnormal. stating a policy-and they expect that quences of some of her actions. I am very proud of the fact that their words will be followed. It is very Megan would always just plunge Megan got through school. I don't difficult for men to understand that ahead. It was so difficult to control know how she did it given the fact mental illness cannot be handled that her. She frequently asked, "Grandma, that she was hearing voices. She had I way. The stigma connected to Megan can we make cookies?" And I always a 3.75 grade point average in the sixth and to her illness seemed to lessen replied, "Yes , but you have to listen to grade and now has a modified high gradually for my son-in-law only af­ my directions because it's the only school diploma. ter he ran into another well-respected way we can bake together. " Megan's professional in his field at a mental mind does not accumulate informa­ Daughter. Fortunately, my daughter health coalition meeting and learned tion from one occasion to fall back and I have always been very close. We that this man, too, has a daughter who

on and use at a later time. We were I have a very good rapport. I cherish has schizophrenia. always repeating. Every baking ses­ the fact that our relationship is very sion with Megan was like the very first free and easy. My daughter does have Friends and Acquaintances. Over the session. Years later, after Megan got down days on occasion and those are years I confided in one very close on the right medication, we learned of great concern to me because of the friend and told her about Megan's that she had been listening. Her brain tension of the situation. One of the problems. She was quite interested had recorded a lot of what she had most heartbreaking and discouraging and tried to offer support to me. Re­ been taught; she just had not been things was watching her struggle for cently, I have told several neighbors able to access the information when three years to finally get an accurate that my daughter'S family has a great she needed it. diagnOSiS and to obtain services for tragedy-my granddaughter has Another thing I have noticed Megan. We have spent a great deal of schizophrenia. Then I try to tell them about my granddaughter is that she time over the years on the telephone, something about schizophrenia. It doesn't enjoy her own company. She sometimes bawling on both ends, be­ requires a certain self-diSCipline to not doesn't like being alone. This business fore resolving what the next move wish to hide Megan's illness. of not wanting to be alone is still very would be in this tragedy. I tend to be dominant today. It causes more diffi­ pragmatic. My daughter called me Hope for the Future. I am an opti­ culties in the family than anything once in tears before an event and said mist. I always hold out hope that else. What we now know-but had that Megan had shaved all of the hair something can be found that will be no idea about earlier-is that Megan off her head. I tried to just get my helpful. I know, too, that as people ' has heard voices since she was about daughter back on her feet and focus grow older, often some of the symp­ on whether we could get a hat for toms of schizophrenia diminish. The NEXT ISSUE: Megan. medication Megan is currently on has been more helpful than we ever dared FOCUS ON ADOPTION Grandson and Son-In-Law. I've tried hope it would be. I am so pleased that to be supportive to my family over the mental health researchers are now The next issue of FOCAL POINT will years with whatever was going on at fOCUSing attention on schizophrenia. explore the impact of adoption on the time. I have shared both in their I think we can do a great deal to re­ families. We will examine the par­ joys and in their crises. I have tried duce the public'S ignorance about ticular social and emotional sup­ to carryon whenever something was mental illness-just note how edu­ ports adoptees and their adoptive going on with Megan. For example, cated the public has become about so families require. The adoptive fam­ my daughter and son-in-law had to many different types of cancer. Many ily life cycle will be described. The take Megan to the emergency room people do not understand that there upcoming issue will explore the instead of participating in my is a biological basis for some mental disproportionate representation of grandson'S 18th birthday family cel­ illnesses. I would like to see Megan child and adolescent adoptees ebration. We just went ahead and develop her artistic talents and I look among youth receiving mental went out to dinner. That way my forward to the day when she "enlarges health services. We will discuss the grandson'S evening wasn't ruined and her life" by developing the ability to issues presented by transracial and his parents could concentrate on live apart from her parents. transcultural adoptions. Megan. D.E.L. , Portland, Oregon. G VOlU Mf 9, NO .1 Mv BROTHER JAMES

y brother James is the middle tickled our fancy and his laughter then) by academy psychiatrists and M child of two middle class Afri­ touched our hearts. was returned to my father and step­ can-American parents. James' life has I can't remember exactly when mother. Within one week he was back seemed inconsequential to a variety things began to change. I guess there in Denver with us. His behavior was of people around him. To one of his were some signs all along. He had very drastically different. James was with­ parents, his development seemed high fevers as a child. I remember drawn and often violent. He would wholly unimportant; to "the mental watching in terror as my brother, af­ sit for hours staring at nothing-at health system," his life was meaning­ fected by fever, ran around the house least I saw nothing-or he would less and hopeless. His extended and looking for his "lightstreamers. " At spend hours in the bathroom. Dur­ nuclear family members (including another time, when three frames in ing the first few months of the mani­ my sister Margo and me) were unable our mother's camera had been ex­ festation of his illness we were all con­ to avert a crisis of immense propor­ posed, none of us would say who did fused, angry, frustrated and tions. The professionals who worked it. My mother spanked all three of us. frightened. Was this just the way with him at a time when-perhaps­ When the roll was developed, the James was dealing with adolescence something could have been done, did three exposures were photos of flow­ or did he in fact have a disease that nothing. It has been only as an adult ers. Finally, my ten-year-old brother could be overcome therapeutically? I that I have been able to put a face and confessed, "A voice told me to take was skeptical about the diagnOSiS of name to my feelings about this illness the pictures." mental illness. I believed my brother from which my brother suffers. James was just "acting" crazy and did know is incapable of functioning within the Adolescence right from wrong; good from bad. But parameters of normalcy in this soci­ By thirteen, like most teenagers, his "crazy" behavior perSisted. ety and as such is only marginally able my brother was experiencing a roller , to sustain a quality of life that has coaster of different emotions. He Therapy and Racial Bias meaning. I am sad that-in so many sometimes ran with the "wrong" After James returned from the East ways- I lost my only brother so early crowd and he and his "friends" would Coast my parents sought the help of in our lives. I am angry that the sys­ often "borrow" my mom's car. James "professionals." My brother regularly tems that were designed to help him found no fulfillment in school or saw a child psychologist and the en­ did not and in doing nothing helped sports or music-all experiences that tire family (excluding my father) par­ to destroy his life and our family in were, at one time, stimulating. From tiCipated in family therapy. My the process. about that time on, my brother and I family'S "weaknesses" were analyzed did nothing but fight each other. As in these sessions. These profession­ Childhood clearly as I remember the time when als theorized that without "proper It has been eons ago now since he was okay, I also vividly recall some guidance" from a father at home, my James was okay. It was a time oflaugh­ of our battles. I almost always lost. I brother lacked the paternal support ter. My brother could make anyone told my mother and sister that I hated necessary for developing children. laugh. He was the life of the party. He him. I wished that I had a brother who They gave James a diagnosis of was always joking about one thing or was my friend and not my enemy. By schizophrenia and started medicating another. There are many images of the time my brother was in tenth him with lithium and thorazine. him in photo albums with an unmis­ grade, my mother was confused, frus­ Wade (1993) notes that "several takably mischievous gesture or face trated and angry at his behavior. She studies have provided support for the that to this day make my sister and made arrangements to send him to contention that racial bias exists in me laugh in fond recollection about stay with our father on the East Coast. the assessment and diagnosis of men­ the time when things were okay. His Before my brother arrived, my fa­ tal illness" (p. 541). While I had no musical endeavors also seemed bril­ ther and stepmother enrolled him in "proof" that the child psychologist liant to me. He would hear a melody a mostly white military academy. and family therapists were biased in one time and within a very short time They cited my father's frequent travel diagnOSing my brother and providing he would be able to play the tune on leading to his inability to effectively treatment, my intuitive belief is that our piano. He began trombone les­ oversee my brother's development, this was the case. James was so heavily sons in elementary school and I found and my stepmother'S fear of having to medicated during this time-and so myself toting both his trombone and "deal with" James as reasons for the little time was spent on developing my cello on the school bus home enrollment. Within eight months, my interventions that may have given while he went to footbalVbasebalV brother was assessed behaviorally dis­ him skills to cope with the voices and track practices. It was a time when ordered (although that probably other manifestations of his illness­ his friends filled our house, his jokes wasn't exactly what they called it that there is no doubt in my mind that G fAll 1995 assessment and treatment bias exist my sister and the baby she was carry­ tion. The mental health system's in­ for children and adults of color. ing. James kicked my sister's abdo­ terventions-before his assault on the men. My mom called the poli ce. police- were not deSigned to help Family Crisis. When the police responded, my James and our family cope with the My sister Margo's pregnancy was brother charged at them. James was sudden behavior changes. By the time very exciting news. My mother was phYSically subdued, taken into cus­ my brother assaulted the police offic­ ecstatic and I was overjoyed at the tody and charged with assault. My ers , he was already well on his way to , prospect of a niece or nephew. My sister lost her baby. I was consumed being institutionalized in a state hos­ brother just grunted and nodded at by all of the loss. pital. My brother was diagnosed with the news. As the months wore on, we The quality of my brother's life schizophrenia. A judge ruled that tiptoed around my brother not know­ changed forever at this juncture. It James was incompetent to stand trial ing what would set him off, not know­ was at this point in his illness that I for assault and committed him to the ing where to turn for help when he began to recognize that the mental Colorado State Hospital in Pueblo got violent, not knOWing how to cope. health system had wholly failed to where he spent the next seven years. As I recall, it was in the evening when address his needs or the needs of his I heard my brother and sister argu­ family adequately before it was too Mental Health Professionals, Race , ing. The threats and arguing got late- beforeJames ended up dead, in Culture and Stress. louder. My brother threatened to kill prison, or in a state mental institu- Wade (1993) describes the basic methodology of psychiatry as: [Cl entered on diagnos ti C procedure. WHY NOT? Understanding of the causation of diagnostic disease involves referring amilies of children or adolescents with emotional or behavioral disabili­ to various explanatory theories. Ob­ Fties are faced with demands that are often incomprehensible to fami­ servations and research findings are lies who have not had to cope with this situation. For these families, much usually analyzed by examining the of the time and money that is available is needed for the care and mainte­ extent to which fe elings, behavior, nance of the child with the disability. Parents- generally mothers-spend social conditions, etc. deviate from countless hours meeting and consulting with teachers, mental health agen­ norms or cause distress" (p. 542). He cies, court personnel and others to help improve the quality of life for the goes on to note that "psychiatric cat­ child with the disability. But siblings of a child with an emotional disabil- · egories become stereotypes [andl ity are often left "out of the loop." Often they must figure out on their own incorporate the racial stereotypes or with limited information what is going on with their brother or sister. present in society with little difficulty" Sometimes they become fearful, confused or angry about their brother or (p. 542). sister's disability. This fear, anger or confusion can often lead to greater Another researcher n oted, family crisis. Ifwe are, in fact, truly committed to "family involvement" in "[Plower and lack of power, inherent deCiSion-making, why not involve the whole family in the treatment plan­ in the roles of clinician and client and I ning process for children with mental, emotional or behavioral disorders? in their cultural group status, can af­ Why not include Siblings and other significant family members such fect clinical process and outcome" as fathers, grandparents, aunts and uncles (anyone who is invested in the (Pinderhughes, 1989, p. 109). health of a family member) in the process of defining interventions and As I think back to our individual treatments? When respite services are being decided upon, why not in­ and family therapy sessions, I re­ clude a brother's or sister's respite needs as a fundamental family need? member hating to go. It seemed that When a grandparent is a provider or caretaker (for even part of the time) I the issues these researchers d e­ why not invite them to sit in on the meetings and consultations and make scribed were present in my brother's full use of the gran,dparent's knowledge when designing interventions? case. His psychologist never seemed We may sometimes find that it is a brother, sister, grandparent or father­ interested in giving us strategies to either custodial or non-custodial-who brings 11 critically important per­ cope with the disruption and James' spective to the table. delusions but, rather, was more in­ As professionals and families strive to help improve the quality of life terested in classifying him with for children with mental, emotional or behavioral disabilities, why not schizophrenia and recommending also focus on the quality of life of those closest to the child? Grandparents, drug therapies. Once my brother sisters, brothers and fathers are family members, too, whose needs and was involved with the "helping" sys­ ideas must be included so that the family "as a whole" may begin to heal. tems he was constantly on medica­ T.WM. tion with little or no other interven­ tion. Is this what our society offers Editor's Note: Readers are invited to submit contributions, not to exceed 250 people who ca nnot cope (through no words, for the Why Not? column. fault of their own) with Iife's stresses? G VO lU Mf 9. NO .1 The stress placed on people of drugs could help ameliorate James' mental illness and no place to~ culturally diverse backgrounds seems problems. The stress that people must asks for a dime. I am saddened by this I insurmountable. Walking the tight­ deal with because they are African­ lack of respect that we demonstrate rope between total assimilation and American or Latino or because they for human life. I am saddened by­ living a cultural life can help to cre­ are too fat or not attractive enough not just the loss of my brother's func­ ate a "schizophrenic perspective." or poor is, in part, the culprit. As I tionallife-but by the losses of moth­ Golden (1995) noted that a young read studies about the utilization of ers, fathers, sisters, brothers, aunts, black man must be "three times as mental health services by people who uncles, grandparents and children ev­ good to get a job an 'average' white are culturally diverse I nod my head erywhere. I am saddened and angry man claims on the basis of genes in agreement. James did not gain any­ that we have lost so many lives and alone" (p. 16). She continued: "The thing by using the mental health sys­ seem destined to lose so many more. most tenacious folklore of racism and tem. In fact, I believe he would have European-defined history defines the been just about the same if he had TRACY WILLIAMS­ black man as a crime against nature. never seen a therapist or psychologist. MURPHY, B.A. , Project For centuries it was criminal for an His life really did not matter to them. Manager, Increasing African-American to learn to read, to Today my brother is an adult in a Multicultural Parent escape slavery to freedom, to compete violent, untrustworthy world. While Involvement Project, in business with whites. The legacy no longer institutionalized in a state Research and Train­ of this censorious past is punishment, hospital, his state of mind is his insti­ ing Center on Fam­ the Scottsboro Boys, lynchings, a sys­ tution. I am saddened by so many ily Support and tem of justice that metes out differ­ things. James will never marry some­ Children's Mental Tracy Williams­ Murphy ent punishments for black and white" one he loves, will never smile at the Health. (p.I27). first steps or words of his child, will never hold a job, will never enjoy so REFERENCES Conclusion. many of the things that most people Golden, M. (1995). Saving our sons. New My sister Margo and I were able take for granted. I am saddened and I York: Doubleday. to cope. My brother, on the other am angry that my brother is one of Pinderhughes, E. (1989). Understanding hand, being the middle child in a fam­ thousands of people with mental ill­ race, ethnicity and power. New York: Free Press. ily dominated by women with little nesses who receive either improper or ' Wade, ]. C. (1993). Institutional racism: or no paternal support (or for a vari­ no treatment-treatment that may An analysis of the mental h ealth ety of other reasons) , was unable to have changed their lives for the bet­ I system. American Journal of cope. The profeSSionals representing ter. I am saddened and angry when I Orthopsychiatry, 63(4) 536-544. the mental health system were quick members of this society stand idly by, to suggest that nothing other than or turn away when a person with

CHUCK: My YOUNGER BROTHER ur family spanned thirteen years, lay nearby, and we were quiet and of disagreement for them. One par­ Ostarting with a boy, then five subdued until he returned. ent wanted to be more strict, the other girls, and finally, another boy. We Chuck has influenced our family more lenient. The opinions of six sib­ were an active family, playing kickball deeply since the beginning of his life. lings added to the confusion, so in the street, camping and picnicking. Each of the Siblings in his or her own Chuck could usually count on some­ Until Chuck was born we all experi­ way noticed that Chuck was differ­ one to stand up for him. By the time enced good health, except for bouts ent from the rest of us. He did not he entered kindergarten, Chuck had , with chicken pox, measles and an oc­ speak as soon or walk as well as oth­ definitely earned a reputation in the casional bruise or scrape. ers. We guarded and watched him family. Chuck was the youngest child, a more than we would another Sibling. The years before Chuck entered long-awaited boy. He was thin and We adapted to his frequent tantrums, school were filled with the usual pic­ wrinkled and bald. He received a lot some by ignoring him, some by yell­ nics, camping trips and family games. of attention from our parents and his ing at him, and others by rewarding Chuck partiCipated as siblings or par­ six siblings. Three weeks after he was him. He could always get a reaction ents watched. Chuck often misjudged born, Chuck developed pneumonia from one of us. his sense of safety, so someone was and returned to the hospital. All of Although my parents had trials constantly "chasing" him. On one us worried about the youngest mem­ and tribulations with the other six camping trip , our older brother ber of our family. His empty bassinet children, Chuck was often the source grabbed him as Chuck reached the ------~------G fAll 1995 edge of a steep hill. We all learned read from her journal and give testi- l to watch him closely, even when he mony that helped get Chuck commit­ protested. ted. During Chuck's various hospital­ His early school years were chal­ izations, several Siblings visited, and lenging, but Chuck made some some did not. progress. Unfortunately, he experi­ We accepted Chuck's childhood enced several seizures, and after ex­ tantrums and odd behavior because tensive testing started medication. they felt relatively harmless. Bizarre It was easy to include Chuck in or controversial behavior in an adult family activities, because we had is unpredictable and frightens us. power in numbers, and someone Chuck's first hospitalization shocked would always take a turn watching and worried us. We thought he might over him. Eventually it was not criti­ not come out of his reaction to the cal to watch Chuck all of the time, "digested" the situation. strong medications. We thought he and it was good to see him become The diagnosis of schizophrenia might be like that forever. Now that more independent. Chuck became took even longer to digest. Our we have watched him behave non­ involved in scouting. Two siblings mother had always taught us to look cooperatively in group living situa­ married and moved away, but would things up in the medical book, so we tions, and have seen him respond ag­ often take Chuck and Barbara (the headed for the closest medical book gressively to case workers, we are two youngest siblings) on outings to find the answers for ourselves. cautious and angry. with them. Some of Chuck's recent behavior Each sibling in our family has re­ Our family dynamics changed as made more sense after reading about acted to Chuck's illness differently. Chuck finished grade school and schizophrenia. The most difficult part One remains distant, but angry. An­ started high school. The five older of the reading explained that schizo­ other stays strongly focused on her children had made changes, by mar­ phrenia is a very long-term illness. own family. Still another is very busy, rying or moving away from home. Chuck was still in the hospital, ad­ but always involved with Chuck. One Chuck and Barbara remained at home justing to medication. He lost weight, prefers individual contact with par­ with our parents. By the time Chuck walked slowly, and stopped at every ents instead of the constant addition and Barbara were teenagers, several water fountain to drink. Meanwhile, of Chuck. One is very loyal to her grandchildren had been born. At our all of us tried to understand what was parents and tolerant of Chuck. An­ frequent family gatherings, new happening to Chuck. other is fearful and avoids family grandchildren played and cried. Chuck's first hospitalization taxed functions. Chuck's expectations of his Grandparents and aunts and uncles everyone in the family. Chuck expe­ Siblings and parents remain high. enjoyed their new roles and the fam­ rienced difficulty with several medi­ As our family expands, we allow ily felt busy, but comfortable. cations, which lengthened his stay. the opinions of others to influence us. During his senior year in high Doctors changed almost daily, so my Spouses, friends and children alter school, Chuck's behavior disrupted parents did not get consistent infor­ our views of Chuck and our parents. our family. He became hostile and mation. Chuck was also over eighteen Chuck's last hospitalization lasted one combative. He argued constantly with at the time, so they received limited year. Our parents traveled extensively our parents, and several siblings tried information. Chuck's appearance and enjoyed the freedom . Their trav­ to intervene. His dramatic change changed and he looked very old. The els continue, but their weekends are frustrated and troubled us. Chuck had doctor explained that Chuck's expe­ often limited because Chuck relies on his first psychotic episode several rience was similar to someone who them for leisure activities, food and months later. Our father took him to had just had major surgery. He gradu­ comfort. Siblings involved with their the hospital after Chuck experienced ally recuperated as we watched and own families seldom include Chuck extreme side effects from his medi­ learned. individually in their activities. Fam­ cations. Through the next fifteen years, ily gatherings provide the social con­ Nothing in our family is ever several major changes occurred in our tact Chuck enjoys. Recently the num­ simple, because at the same time our family. New grandchildren, a new ber of outings has decreased because mother was in the hospital for sur­ business, four divorces, Dad's retire­ one or two siblings and their families gery on her arm. The next few days ment, three grandchildren'S high might stay away. This past Christmas the family rallied around our father. school graduations, and two major one family chose to avoid the gather­ He reassured our mother that Chuck illnesses. Throughout that fifteen ing at our parents' home. Many of us responded to medication, and was years Chuck has been hospitalized I were angry at the family who stayed improving. In reality, Chuck's side ef­ many times. I attended a commitment away. We have suddenly developed fects were harsh, and he recuperated hearing and watched my brother's bi­ strong opinions about Chuck's in­ slowly. Siblings visited Chuck and zarre behavior. I heard my mother volvement with our family. G VOlU Mf ~, NO. Z fO INT

Should we protect our children, They know and work with Chuck's Each of us wrestles with Chuck's or should we include Chuck? Many mental health professionals. Siblings schizophrenia separately. it is some­ siblings think we can do both. Some generall y ask about recent develop­ times a delicate issue for us, because are fearful, since Chuck has been ag­ ments with Chuck, but few interact it is painful. Chuck missed several gressive and inappropriate in the past. personally with Chuck unless he is summers because hospitalizations So me siblings are not willing to in our parents' home. kept him away from activities and gamble that Chuck's most recent hos­ We will undoubtedly begin our carefree times. His life is different pitalization has been the most help­ family gatherings again, but we will from ours, and we sometimes do not ful and that his behavior changed. not worry about who does or does not comprehend it. We are all part of a Through all of the sibling debate, participate. Those who do not come vibrant, active family and Chuck en­ our parents remain loyal to Chuck. will miss a fun time. Our strong his­ joys it. Our challenge is to accept him The stigma of Chuck's mental illness tory of weekend picnics and family and to understand is attached mostly to Chuck and to birthday events will continue, with a our roles as siblings our parents, since siblings can choose new awareness. We have endured fif­ to Chuck and chil­ to become detached. As our parents teen years of mental illness. We will dren to our parents. age, we become more concerned change as the course pf the illness about their retirement years. Both changes. Just as we watched Chuck SUSAN TINGLEY parents support and participate in the as a young child, we will watch him Portland, Oregon National Alliance for the Mentally Ill. now to make sure that he and the rest of us are safe. Susan Tingley

FAMILY PERSPECTIVE I NEVER WANTED To LIVE IN NEW YORK CITY hen I was pregnant with my hustle, the noise, things that moved. They are friends of the heart. Some­ W son, I dreamed, as mothers He had places to go. There were no times 1 see a friend who lives in that do, about what our life would be quiet walks through silent snow­ sleepy little town and we have little like. 1 saw us living in a sleepy little falls-but shrieking, running, falling, to say to one another. She seems to town, where life was slow and pre­ crying, bursting into the snowy world wonder why I live in New York City dictable. 1 would know almost ev­ as if he could capture it all. 1 couldn't instead of in her sleepy little town. eryone and they would know me; slow him down, to make him see the I don't tell her that sometimes late and people would say, "Isn't she a kind of town 1 wanted. All he wanted at night I think of that town where good mother! " was New York City. Friends, family 1 thought I would live, but it never 1 like quiet things like soft mu­ and neighbors shook their heads and really existed for me. sic, a silent snowfall and so I saw 1 was sure they were saying, "Not a Reality is living life with a sharp­ our days as serene, mild, and sunny. good mother. She must be doing ened edge-never knowing where We would read books, rock, sing something wrong." my son will take me, often to see lullabies, and share gentle hugs. Our Then came teachers, new doctors, things I'd never see on my own. Real street of life would be peaceful with and strangers who wanted to hear my for me is living with bright lights, little traffic or noise-no sirens story. 1 met people I never wanted to sirens, endless traffic. It is seeing the here! meet. I went to meetings, conferences, tallest towers in the world and won­ But when my son was born, it lectures, to learn about this, learn dering how I'll ever get over them. was as if I'd emerged in New York about that. Find a name, a label­ Real is living with a hyperactive City. Every day, every hour, was a wait-is it this, or is it that? child. And I've changed, changed so screeching, horn-blowing night­ As 1 lived through the great highs, much in so many ways that when I mare. It was howling, sleepless the note that said, "He behaved well dream, I dream of New York City. nights with a baby that-like New today," 1 survived the lows, "Call me. Marilyn Churchill, York City-never seemed to sleep, A terrible day. " I began to understand Green Bay, Wisconsin. never paused. There were many dashing headlong through the snow gray and stormy days. No interest when I felt 1 couldn't get through an­ Editor's Note: Parents are invited to in rocking and scant patience for other day. submit contributions, not to exceed lullabies. The strangers I've met-other 250 words, for the Parents' Perspec­ My child: restless, brilliant, al­ mothers who live in this city too­ tive column. ways seeking the bright lights, the have become my best friends now. G) fAll 199 5 Mv SON TAUGHT ME To KEEP FIGHTING AND To KEEP Mv HEAD RAISED HIGH

hen my son was hospitalized we were told that he would probably egon. Recently, I resigned my position W and diagnosed with a mental not complete high school. We could and started Compassion Ministries. I illness, I was embarrassed. I felt I had forget about college completely. How am attempting to educate the faith failed as a parent and father as well as devastating! My question was, "What community about mental illness, to being a poor role model for my church about his potential? Did someone eradicate the stigma associated with congregation as their pastor. make a mistake?" this disease, and to help the faith com­ However, my congregation rallied With all of this crashing down munity learn how they can reach out around my family and me. One couple upon me, what has sustained me has to people with mental illnesses and visited us when our son was hospi- I been my personal religious faith and to their families. talized and helped us as a family work my local support group, the Mid-Val­ I must confess, however, that I through our pain. When our son ley Alliance for the Mentally Ill. often wonder "when the other shoe came home after his second hospital­ This support group has helped me I will drop." I am fearful of another ization, three families offered to watch work through my feelings of embar­ I episode or crisis with my son's illness him for a few hours so my wife and I rassment, frustration, and anger in a as it rears its ugly head. Yet, I have could have some free time. It was very healthy manner. It has also empow­ many resources to draw upon: my draining to be the caregiver of a child ered me to be an advocate working religious faith, the Alliance for the diagnosed with bi-polar illness and toward better understanding of men­ Mentally Ill, education about the ill­ have no breaks from our caregiving tal illness, working to obtain better ness, my church, and my wife. Had responsibilities. services for my son and others in a our son not come into our home, I It was very difficult and frustrat­ system that is archaic and dehuman­ would have never been exposed to ing to watch our son deteriorate. As izing. This had led me to speak to such a variety of folks from various he deteriorated, our dreams for him elected officials, the "faith commu­ walks of life who have so much em­ shattered. At a young age my son nity", schools, civic groups and oth­ pathy and who have offered so much had been tested through the ers. My goal is to inform these indi­ support. My son has schools. His test scores were very viduals and groups about mental taught me to never high. At one point we were told, illness and how they can offer solu­ give up, keep fight­ "You've got a genius." My son be­ tions and services to those with a ing and keep my gan reading at about the age of three mental illness and their family mem­ head up. For this, I and one-half and could carryon bers. thank him. wonderful conversations. We were As a Presbyterian minister I I '0 excited ,bout hi, potenti,!! pastored for many years in the states MIKE RINKIN After my son's first hospitalization of California, Washington and Or­ Albany, Oregon Mik e Rinkin

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NEW CHILDREN'S MENTAL HEALTH PUBLICATIONS AVAILABLE

rom Case Management to Service range of service coordination issues tal Health, and Professor, Graduate FCoordination for Children With including, among others: 0) initiat­ School of Social Work, Portland State Emotional, Behavioral, or Mental Dis­ ing case management services; (2) University, Portland, Oregon and orders: Building on Family Strengths coordinating interagency efforts; (3) John Poertner, D.S.W. , Professor, details the national shift to deliver­ financing under Medicaid and School of Social Welfare, University ing coordinated, family-centered care. through private insurers and managed of Illinois, Urbana, formerly at Uni­ The focus throughout this newly pub­ care organizations; (4) gathering data versity of Kansas, Lawrence. For or­ lished book is upon building rapport based on outcomes and computeriz­ dering information contact: Paul H. with each family, closely involving ing records to increase efficiency; (5) Brookes Publishing Company, P.O. families in decision-making about developing a curriculum and goals for Box 10624, Baltimore, Maryland their children's care, and providing training; and (6) emphasizing the 21285-0624; voice: (800) 638-3775; community-based services in the importance of the family's role in pro­ fax: (410) 337-8539. home, at school and in recreational viding care. This volume is edited by environments. This first volume in a Barbara J. Friesen, Ph. D., Director, Making Medicaid Work to Fund Inten- new book series Systems of Care for Research and Training Center on I sive Community Services for Children

Children's Mental Health addresses a Family Support and Children's Men­ I with Serious Emotional Disturbance: L-______~ ______J_

VO lUMf• g, NO.2 fO INT

An Advocacy Guide to Financing Key creating comprehensive, flexible edu­ Components ofa Comprehensive State cational programs for students with 1996 NAMI-CAN System of Care offers a summary of emotional or behavioral disorders. A the federal rules on EPSDT (Early and discussion of specific problems asso­ SUMMER 1996 MEETING Periodic Screening, Diagnosis and ciated with services for children and Treatment) services as well as a dis­ youth with emotional or behavioral The 1996 National Alliance for the cussion of targeted case management disorders includes the following topi­ Mentally Ill's (NAMI) annual con­ as an optional Medicaid service. Ad­ cal areas: unserved students, cultural vention will be held at the ditional topics include: (a) a descrip­ bias, failing programs, and a lack of Opryland Hotel in Nashville, Ten­ tion of home- and community-based comprehensive educational pro­ nessee July 6-9, 1996. A special services Medicaid waivers that permit grams. Critical education issues are pre-convention Children and Ado­ states to offer a variety of services identified and policy options are ex­ lescents' Network (CAN) session within the community for children plored. For ordering information con­ scheduled for July 5th will focus who would otherwise require institu­ tact: Center for Policy Options in Spe­ on the needs and interests of par­ tional care; (b) freedom of choice cial Education, Institute for the Study ents whose children have mental, waivers to provide care through pre­ of Exceptional Children and Youth, emotional or behavioral disorders. paid, capitated arrangements; and (c) University of Maryland at College Additional sessions of interest to a summary of states' use of Medicaid Park, College Park, Maryland 20742­ parents will be presented through­ to fund intensive community services 1161 ; (301) 405-6509. out the four-day convention. For for children with serious mental , more information on the conven­ emotional or behavioral disorders. Resourcesfor Staffing Systems ofCare tion please contact: Convention For ordering information contact: for Children With Emotional Disor­ Department, National Alliance for Bazelon Center for Mental Health ders and Their Families is the result the Mentally Ill, 200 N. Glebe Law, 1101 FifteenthStreetN.W,Suite of a national survey funded by the Road, Suite 1015, Arlington, Vir­ 1212, Washington, D.C. 20005; (202) Center for Mental Health Services, ginia 22203-3754; voice: (703) 467-5730; TDD: (202) 467-4232. United States Department of Health 524-7600; fax: (703) 524-9094.. and Human Services, to begin to iden­ Components of a System of Care: tify strategies and resources for re­ What Does the Research Say? reviews cruiting, retaining, training and de­ problems in relationship and commu­ the literature on the effectiveness of veloping a workforce to delivery nication patterns are some of the the components in a system of care community-based, family-focused types of disorders addressed. For or­ for children with serious mental services to children and their fami­ dering information contact: Zero to health problems. This 1994 review of lies within the context of an inter­ Three/National Center for Clinical recent research literature addresses agency system of care. For ordering Infant Programs, 2000 14th Street the following eight components in a information contact: National Tech­ North, Suite 380, Arlington, Virginia system of care for children: residen­ nical Assistance Center for Children's 22201; voice: (800) 899-4301 or tial care, outpatient psychotherapy, Mental Health, Georgetown Univer­ (703) 528-4300. day treatment services, family pres­ sity Child Development Center, 3307 ervation services, therapeutic foster M Street, N.W., Washington , D.C. Where Can We Turn? A Parent's Guide care, crisis and emergency services, 20007-3935; voice: (202) 687-5000; to Evaluating Treatment Programs for case management/individualized care, fax: (202) 687-1954. Troubled Youth assists parents in their and family support services. For or­ efforts to research treatment programs dering information contact: Research Diagnostic ClaSSification of Mental for their sons and daughters. The top­ and Training Center for Children's Health and Developmental Disorders ics addressed include identifying a Mental Health, Florida Mental Health of Infancy and Early Childhood: 0-3 program's treatment philosophy, how Institute, University of South Florida, provides a comprehensive framework the program deals with youth running 13301 Bruce B. Downs Blvd. , Tampa, for diagnosing emotional and devel­ away from the program, understand­ Florida 33612; (813) 974-4661. opmental problems in the first three ing program costs and insurance cov­ years of life. This volume identifies erage, length of stay, admission pro­ Doing things differently: Issues and and describes disorders not addressed cedures, and receiving school credits. options for creating comprehensive in other classification systems and the The guide also includes a scoring school-linked servicesfor children and earliest manifestations of problems sheet for parents so that they can youth with emotional or behavioral described in other systems for older evaluate a program before enrolling disorders, a recent publication children and adults. Infants' and tod­ their child. For ordering information through the Center for Policy Options dlers' reactions to trauma, distur­ contact: Jefferson Resource Institute, in SpeCial Education, promotes bances in affect, difficulties in regu­ Inc., PO. Box 211418, Salt Lake City, awareness of the issues involved in lation of mood and behavior, and Utah 84121-8418; (80l) 944-1174. fD fAll 1995 BUILDING ON FAMILY STRENGTHS CONFERENCE FEATURES RESEARCH AND INNOVATIVE PROGRAMS

he Research and Training Cen ments in family research methods, stitute of Mental Health, spoke at T ter on Family Support and family member/consumer involve­ the second plenary session. He de­ Children's Mental Health hosted the ment in research, family support, scribed advances in research that second annual conference, Building and family diversity. The majority have the potential to benefit chil­ on Family Strengths: Research and of workshop sessions addressed dren and their families. Dr. Jensen Programs in Support of Children and both research and program issues also acknowledged ga ps in knowl­ Their Families , in Portland, Oregon with topics such as system barriers edge and understanding of child­ on June 1-3, 1995. More than 400 to services, family roles in design­ hood disorders by clinicians and family members, researchers, edu­ ing and implementing policy, and researchers and invited family mem­ cators, service providers, advocates family-centered approaches to re­ bers to consider themselves as ex­ and policymakers attended. The search and evaluation. Several perts about their own children. conference was designed to provide workshops discussed aspects of di­ A luncheon plenary on the topic a forum in which to examine and versity by outlining strategies for of family-centered, culturally com­ disseminate state-of-the-art re­ family involvement, and highlight­ petent systems of care included dy­ search findings and issues of family ing strengths of families and com­ namic presentations by Velva support and family-centered ser­ munities as well as natural support Spriggs and Janice Hutchinson. Ms. vices and to highlight family partici­ systems. Spriggs is the director of Planning pation in the research process. The More than twenty family mem­ and System Development Programs conference was also a forum in bers and professionals presented in the Child, Adolescent and Fam­ which participants could interact visual descriptions of their research ily Branch of the Center for Mental and exchange information on a wide in a lively poster session. Topics of Health Se rvices, Substance Abuse range of family research issues. poster presentations ranged from an and Mental Health Services Admin­ Four major themes were ad­ evaluation of a famil y support istration, U.S. Department of Health dressed through paper, symposia project to wraparound training for and Human Services. She discussed and poster presentations: develop- parents. In addition, special inter­ the need for all parties in the treat­ est groups met each evening to con­ ment of children to confront and sider strengths and challenges for eliminate racism in communication, MARK YOUR CALENDARS local programs and research projects service delivery and policymaking. involving family members. Dr. Hutchinson , acting administra­ Building on Family Strengths: Family members and profession­ tor of the Child and Youth Services Research, Advocacy &: Partnership als joined together to present many Administration, District of Colum­ in Support of Children of the workshops and two of the bia, used brief video segments about and Their Families plenary sessions during three meet­ the district's outreach programs to ing days in Portland. Parent sti­ illustrate the necessity for innova­ Conference Dates: pends were awarded to approxi­ tive thinking in order to deliver Aprilll-13, 1996 mately fifty participants. Stipends mental health and other services to Location: Hilton Hotel covered conference-related ex­ children wherever they are. Portland, Oregon penses such as air fare , lodging, The Oregon Family Support Net­ meals, registration fees or child care. work co-sponsored an evening re­ For Additional Information: The initial keynote was given by ception designed as a forum for par­ Kaye Exo, M.5.W, Karl Dennis, executive director of ents, family members, caregivers, Conference Coordimitor Kaleidoscope, Inc. in Chicago. Al­ advocates and professionals to meet Research and Training Center ways a popular speaker with both and exchange ideas and informa­ on Family Support and Children's parents and professionals, Mr. Den­ tion. This program featured intro­ Mental Health nis discussed the implications of ductions of professionals and fam­ PO. Box 751 wraparound services for children, ily members from the twenty-two Portland, Oregon 97207-0751 their families , and the service pro­ Service Initiative Sites and leaders Voice: (503) 725-5558 viders and communities around of the twenty-eight Family Network TDD: (503) 725-4165 them. Grants. Other sponsors included the Fax: (503) 725-4180 Dr. Peter J ensen , chief of the Research and Training Center on E-Mail: [email protected] Child and Adolescent Disorders Family Support and Children's Men­ Research Branch of the National In­ tal Health, the Federation of Fami­ fD VOlUME 9. NO.1 lies for Children's Mental Health, and the Department of Mental Hy­ , CONFERENCE ATTENDEES giene atJohns Hopkins University. The conference concluded with a panel describing "Positive Ex­ amples of Researcher/Family Col­ laboration. " The panelists were Mary Evans of the New York State Office of Mental Health; Valerie King of the Citizens' Committee for Children of New York; Philip leaf fromJohns Hopkins University De­ partment of Mental Hygiene; Susan Tager, Familes Involved Together, Baltimore;Yvette Nazario of the Craig Ann Heflinger, Harold Briggs, Research and Vanderbilt University, Training Center on Family Support Bronx Parent Resource Center; and Nashville, Tennessee & Children's Mental Health Mary Telesford, Annie E. Casey Foundation Site Advisor for the Federation of Families for Children's Mental Health. The Building on Family Strengths Conference was co-spon­ sored by the Research and Training Center on Family Support and Children's Mental Health; the Na­ tional Institute on Disability and Rehabilitation Research, U.S. De­ partment of Education; the Center Jean Kruzich, University of Ann May, Families CAN, for Mental Health Services, Sub­ Washington, Seattle and Research & Raleigh, North Carolina stance Abuse and Mental Health Training Center, Portland Services Administration, U.S. De­ partment of Health and Human Ser­ vices; the Annie E. Casey Foundation's Urban Children's Men­ tal Health Initiative; the Department of Mental Hygiene, Johns Hopkins University; the Federation of Fami­ lies for Children's Mental Health; and the Oregon Family Support Network. Conference proceedings, includ­ Melvin Delgado, Boston Susan Yuan, University of ing transcripts of plenary sessions University, Boston, Massachusetts Vermont, Burlington, Vermont and summaries of workshop presen­ tations, will be available. For additional information con­ tact: Kaye Exo, M.S.W. , conference coordinator, Research and Training Center on Family Support and Children's Mental Health, PO. Box 751 , Portland, Oregon 97207-0751; Telephone: (503) 725-5558; TDD: (503) 725-4165; Fax: (503) 725­ 4180; E-Mail: [email protected] Martha Matthews, Debi Elliott (left), Portland State National Center for Youth Law, University and Marilyn McManus, San Francisco, California Research & Training Center

fD fAll 199 5 NOTfS &COMMfNTS

NEW PUBLICATIONS AVAILABLE raphy describes literature that addresses the issue of "what­ THROUGH RESEARCH ever it takes" to aid families in caring for an individual &: TRAINING CENTER'S RESOURCE SERVICE who has a disability in order that the family may stay to­ gether, build strength, and limit or avoid placement of Five new publications are available through the Research the individual with a disability into institutional or other and Training Center's Resource Service. An Introduction to non-family settings. Specific topics addressed include the Cultural Competence Principles and Elements: An Annotated personal and interpersonal lives of family members, in­ Bibliography describes books, monographs and articles cluding relationships with formal and informal support that exemplify various aspects of the cultural competence persons; the service system for families and public policy model. The areas addressed include the following: cul­ related to family support; and descriptions of specific fam­ tural self-assessment, dynamics of difference, valuing di­ ily support programs or services. versity, adaptation to diversity, and incorporation of cul­ Ordering information is provided on page 27. tural knowledge. Collaboration in Interprofessional Practice and Training: An Annotated Bibliography examines a variety of issues fEDERATION OF FAMILIES' SEVENTH AI\NUAL related to interprofessional, interagency and family-pro­ CONFERENCE FEATlTRES MAYA A"lGELOU fessional collaboration. These issues include: the need for interprofessional collaboration in family-centered prac­ Maya Angelou, author of I Know Why the Caged Bird tice; principles of collaboration; organizational, adminis­ Sings , and Inaugural Poet for President Bill Clinton, will trative and policy issues related to collaboration; meth­ give the keynote address at the seventh annual Federa­ ods of interprofessional collaboration; and barriers to tion of Families for Children's Mental Health meeting implementing collaboration. This publication also exam­ entitled Redefining Advocacy: New Challenges. New Di­ ines the literature on training for collaboration and pre­ rections. The meeting is scheduled for November 17­ sents interprofessional program and training examples. 19,1995 at the].W Marriott Hotel in Washington, D.C. Interprofessional Education for Family-Centered Services: Conference topics will include: legislative advocacy, A Survey ofInterprofessionaliInterdisciplinary Training Pro­ leadership training, cultural awareness, public aware­ grams presents findings from a study designed to identify ness strategies, family-friendly research, education re­ family-centered training programs that prepare profession­ form and innovations in family-focused services. als to work collaboratively with members of other profes­ A limited number of scholarships are available to sions, in interagency settings, and incorporate attention help ensure that families from all ethnic and cultural to family-professional collaboration. Two major groups backgrounds, all economic circumstances and all geo­ of education and training programs were included in the graphiC regions of the country have the opportunity to study: (1) university pre-service and professional educa­ participate in the Federation's annual meeting. Child tion programs; and (2) agency-based in-service and con­ care services will be available when arranged in advance. tinuing education programs. Information is provided con­ For additional conference information contact: Federa­ cerning the design, planning, implementation, content, tion of Families for Children's Mental Health, 1021 administration and evaluation of training programs. A dis­ Prince Street, Alexandria, Virginia 22314-7710; phone: cussion of the findings and recommendations for devel­ (703) 684-7710; fax: (703) 836-1040. oping and implementing training for family-center prac­ tice is included. NINTH ANNt:AL CHILDREN'S ME~TAL HEALTH Family Involvement in Policy Making: A Final Report on RESEARCH CONFERENCE the Families in Action Project presents the findings of the Families in Action Project, an examination of the experi­ CALL FOR PAPERS ences of parents and other family members of children The Research and Training Center [or Children's Men­ with mental, emotional and behavioral disorders as mem­ tal Health has scheduled its ninth annual research con­ bers of policy-making boards, committees and other ference, entitled A System of Care for Children's Mental policy-related bodies. The project's findings are presented Health: Expanding the Research Base. The conference will as follows: (1) the outcomes of focus group life history be held February 26-February 28, 1996 at the Hyatt interviews are described; (2) five case studies of the expe­ Regency Westshore in Tampa, Florida. Proposals for riences of parents and parent organizations in policy-mak­ paper presentations, symposia and posters on service ing processes are reviewed; (3) the results of question­ system research, evaluation, studies of the effectiveness naire data collected from site participants are described; of innovative services, epidemiological research, cul­ and (4) the implications of the findings for family mem­ turally competent systems, and systems finanCing are bers and policy-makers interested in enhancing family invited. The deadline for submission is October 30, member participation on policy-making bodies as well as 1995. For submission information and instructions recommendations for further research are provided. contact: Krista Kutash, Ph.D., Deputy Director, Research Family Support and Disabilities: An Annotated Bibliog­ and Training Center for Children's Mental Health, fD VDlUM( g, NO.1 NOlfS &COMMfN1S

Florida Mental Health Institute, University of South that we use child-first language. For example, brochure Florida, 13301 Bruce B. Downs Blvd. , Tampa, Florida copy should state that "a child is experiencing a seri­ 33612-3899; telephone: (813) 974-4661; fax: (813) ous emotional disturbance" versus referring to "a seri­ 974-4406; E-Mail: [email protected] ously emotionally disturbed child." Why? Child-first language includes children with their peers and within communities. Child-first lan­ PORTLAND RESEARCH AND TRAI:--';I:--';G guage addresses the fact that children are all so much CENTER SCllEDl'LFS alike, rather than highlighting the differences that sepa­ SPRING 1995 CO'\f[RE;\IC E A:--:D rate children from each other. ISSUES C\U FOR PAPERS Two other important uses of language are the elimi­ The Research and Training Center on Family Support and nation of acronyms and abbreviations when speaking Children's Mental Health will sponsor a national confer­ to people about children's mental health. For example, ence , Building on Family Strengths: Research, Advocacy, and say "serious emotional disturbance" rather than "SED." Partnership in Support ofChildren and Their Families, April Why? Both of these mechanisms-acronyms and ab­ 11 -13, 1996 at the Portland, Oregon Hilton Hotel. This breviations-that shorten the written word go a long conference is a forum for the examination and dissemina­ way (oward keeping people from understanding what tion of state-of-the-art research approaches and findings you are trying to communicate to them. By omitting acronyms and abbreviations from your in the areas of family support and family-centered care. I This year's conference will feature the needs and experi­ copy and speech, you avoid creating a "clubhouse" men­ ences of families whose children have serious emotional tality. That is , either you are in the club, and thus know disorders across the child welfare, juvenile justice and what these acronyms and abbreviations mean, or yo u substance abuse/mental health treatment systems. Propos­ are not a part of the club. als that emphasize competence as applied to culturally, Parents many times feel outside the club when deal­ ing with professionals who frequently use abbreviations racially and linguistically diverse populations and com­ I munities are especially welcome. and acronyms. Since our goal is to include parents as The conference is intended to bring together family partners with professionals working on behalf of their members, researchers, policy-makers, service providers, son or daughter, we need to be particularly sensitive to and advocates interested in strengthening research and how we speak and how that translates to those not in

I prac ti ce in response to the needs of children and families. our systems. The conference will provide an opportunity for partici­ As for members of the general public, many people pants to disseminate findings and innovations in family will be too embarrassed to ask what an acronym or ab­ research. breviation means. Proposals are invited in the form of paper presenta­ The media will have an easier time getting to the tions, poster sessions or symposia. Preference will be given heart of what you are saying if they do not have to swim to abstracts that feature research and evaluation. The Call through "alphabet soup." for Papers will be mailed to all recipients of Focal Point in I hope that this simple gUide can help strengthen

I September 1995. your interactions with others and ensure that children For additional information on the conference please are seen in the best light possible. Gary De Carolis, contact: Kaye Exo, M.S.W , Conference Coordinator, Re­ Chief; Child, Adolescent and Family Branch; Division search and Training Center on Family Support and of Demonstration Programs; Center for Mental Health Children's Mental Health, PO. Box 751 , Portland, Oregon Services; United States Department of Health and Hu­ 97207-0751; e-mail: [email protected]; voice: (503) 725­ man Services. 5558; TDD: (503) 725-4165; fax: (503) 725-4180. TRAINING INSTITllTES ON SYSTEMS OF CARE LANGUAGE AS A TOOL {"OR CHILDREN PLANNED rORJUNE 1996 TO PROMOTE CIlILDREN An important upcoming event will provide an inten­ I The use of language can be a critical factor in shaping sive training opportunity for a wide range of partici­ people's opinions about children and their families. We pants. The bi-annual Training Institutes are scheduled all must emphasize through our words that whatever for June 9-13,1996, and will be held in Traverse City, disabilities children may fac e, they are children first. Michigan at the Grand Traverse Resort. We need to make sure that each child is seen first as a The 1994 Training Institutes, also held in Traverse child with all the wonderment and innocence that City, were attended by nearly 1300 individuals, indi­ childhood brings-an opportunity every child should cating an extraordinary level of interest in training re­ experience. lated to the development of systems of care. Accord­ It is with this in mind that we need to make sure ingly, the 1996 Training Institutes entitled Developing ) 6) fAll199S NOTfS &COMMfNTS

Local Systems of Care for Children and Adolescents with director of mental health services heard us speak. He was Severe Emotional Disturbances, will offer an opportu­ so excited about the concept of youth self-advocacy that nity to obtain in-depth, practical information on how he invited us to speak to 1300 people at a national train­ to develop, organize and operate comprehensive, co­ ing for mental health workers and parents. He pledged ordinated, community-based , family-focused systems funding for a video that will be distributed nationally. of care for children and their families. A major focus Here in Michigan, Dr. Richard Baldwin, State Direc­ on developing systems of care in a managed care envi­ tor of Special Education, has shown his support. He pro­ ronment is planned for the 1996 Institutes. vided funding for our statewide newsletter Rebound. We The Institutes are designed for a variety of individu­ went to Lansing to present him with a copy of the first als including state and local administrators, planners, issue." providers, parents, and advocates. A primary target The group chose the name Rebound to reflect the fact group consists of agency administrators, managers, pro­ that, although everyone has problems in life, individuals viders, and family members from local areas, represent­ who succeed are those who keep trying. These are the ing mental health and other child-serving agencies. individuals who grab the ball after a missed shot and drop These individuals, ideally attending as a team, are the it through the hoop. ones who can take the knowledge and skills developed MACED Youth Forum members encourage children at the Institutes and begin to apply it in their home and adolescents with mental illnesses to speak out about communities. This training can be an invaluable expe­ their feelings. For example, teachers are encouraged to rience for communities planning system improvement hold regular meetings with students to identify their initiatives. needs. One youth explained, "Youth Forum has helped The Institutes are sponsored by the National Tech­ me achieve and be all I can be. I set the goal of being nical Assistance Center for Children's Mental Health understood. The school staff listened and gave me a lan­ at Georgetown University and are funded by the Cen­ guage test. They found problems and now I am working ter for Mental Health Services, Substance Abuse and on them. I never got the test before I asked. It felt great to Mental Health Services Administration. For more in­ set my own direction." formation contact the National Technical Assistance "I want to become a better person. Learning to speak Center for Children's Mental Health at 3307 M Street, out has helped. I used to be left out and that hurt. Other N.W. , Washington, D.C. 20007; (202) 687-5000. people talk behind my back, but Youth Forum kids and teachers show respect. I believe that teaching other kids about how to cope is one way to teach self-advocacy." MICHIGAN YOUTH ESTABLISH FORUM For additional information contact: MACEDlRebound, 321 West South Street, Kalamazoo, Michigan 49007; (616) Four years ago children and youth with mental, emotional or behavioral disorders were invited to attend the annual 343-5896. meeting of the Michigan Association for Children With Emotional Disorders (MACED). The goal was to solicit JOURNAL OF MENTAL HEALTH their opinions about the changes underway in the deliv­ AD~llNISTRATlON ISSCES CALL FOR PAPERS ery of mental health services to Michigan's children and youth. Pauline Becker, a MACED regional director ob­ The Journal of Mental Health Administration is solicit­ served, "The kids just got right down to business. They ing manuscripts for a forthcoming special section on opened up to one another and to the adults and quickly Law and Mental Health Policy. Contributions are in­ organized themselves as a group." Group members pro­ vited on topics including epidemiology, financing, im­ duced a booklet What Hurts? What Helps? that summa­ pact of law on inpatient and outpatient services deliv­ rizes the youths' recommendations for improving the de­ ery, impact of legislation on mental health policy, livery of mental health services to children and alcohol and drug abuse, and the legal system. Other adolescents. topics are welcome as they relate to law and mental Pat Poe explained, "I am a founding member of the health policy. Th e Journal of Mental Health Administra­ Youth Forum. I was a little confused at first. I thought, tion is a peer-reviewed journal that publishes manu­ 'What's going on? These adults are talking to us with re­ scripts on the organization, financing, policy, planning spect!' We kids leaped into the concept. Before the day and delivery of mental health and substance abuse ser­ was over, we had asked for a seat on the MACED board. vices. For additional information contact: Bruce We are now a standing committee of the MACED. Our Lubotsky Levin, Dr.PH., Editor,Journal of Mental Health chairperson has an automatic seat on the board the same Administration, Florida Mental Health Institute, Uni­ as the chair of any other standing committee. versity of South Florida, 13301 Bruce B. Downs Boule­ We have accomplished many things already. We have vard, Tampa, Florida 33612-3899; voice: (813) 974-6400; spoken at a conference in Washington, D.C. The national fax: (813) 974-4406; e-mail: [email protected]

VOlUM[• g. NO .1 PUBliCATIONS

o ANNOTATED BIBLIOGRAPHY. COLLABORATION BETWEEN PROFESSIONALS & o GLOSSARY OF ACRONYMS, LAWS, &TERMS FOR PARENTS WHOSE CHILDREN FAMILIES OF CHILDREN WITH SERIOUS EMOTIONAL DISORDERS. $6.00. HAVE EMOTIONAL HANDICAPS. Glossary excerpted Jrom Taking Charge. ApproXimately 150 acronyms, laws, words, phrases explained. $3.00. :J ANNOTATED BIBLIOGRAPHY. PARENTS OF EMOTIONALLY HANDICAPPED CHIL­ DREN: NEEDS. RESOURCES. &RElATIONSHIPS WITH PROFESSIONALS. $7.50. o INTERAGENCY COLLABORATION: AN ANNOTATED BIBLIOGRAPHY FOR PROGRAMS SERVING CHILOREN WITH EMOTIONAL DISABILITIES &THEIR FAMILIES. $5.50. :J ANNOTATED BIBLIOGRAPHY. YOUTH IN TRANSITION: RESOURCES FOR PROGRAM DEVELOPMENT &DIRECT SERVICE INTERVENTION. $6.00. o NEW! INTERPROFESSIONAL EDUCATION FOR FAMILY-CENTEREO SERVICES: A SURVEY OF INTERPROFESSIONAlIlNTERDISCIPLINARY TRAINING PROGRAMS. Plan­ C1 BROTHERS &SISTERS OF CHILDREN WITH DISABILITIES: AN ANNOTATED BIBLIOG­ ning, implementation , content, administration, evaluation oj Jamily­ RAPHY. $5.00. centered training programs Jor proJessionals. $9.00. :J BUILDING ACONCEPTUAL MODEL OF FAMILY RESPONSE TO ACHILD'S CHRONIC o NEW! INTROOUCTION TO CULTURAL COMPETENCE PRINCIPLES AND ELE­ ILLNESS OR DISABILITY. Proposes comprehensive model oJJamily caregiving MENTS: AN ANNOTATED BIBLIOGRAPHY. Cultural selJ-assessment, dynamics oj based on literature revi ew. Causal antecedents, mediating processes and diJJerence, valuing div ersity, adaption to diversity, incorporation oj cul­ adaptational outcomes ojJamily coping considered. $5.50. tural knowl edge. $6.50. o CHANGING ROLES, CHANGING RELATIONSHIPS: PARENT-PROFESSIONAL COL­ o ISSUES IN CULTURALLY COMPETENT SERVICE DEliVERY: AN ANNOTATED BIBLIOG­ LABORATION ON BEHALF OF CHILDREN WITH EMOTIONAL DISABILITIES. Examines RAPHY. $5.00. barriers to collaboration, elements oj successJul collaboration, strate­ gies Jor parents and proJessionals. $4.50. o MAKING THE SYSTEM WORK: AN AOVOCACY WORKSHOP FOR PARENTS. A trainers' gUide Jar a one-day workshop to introduce th e purpose oj :J CHILD AOVOCACY ANNOTATED BIBLIOGRAPHY. $9.00. advocacy, identify so urces ojpower, the chain oj command in agencies and o CHOICES FOR TREATMENT: METHOOS, MODElS, &PROGRAMS OF INTERVENTION school systems, practice advocacy techniqu es . $8.50. FOR CHILDREN WITH EMOTIONAL DISABILITIES &THEIR FAMILIES. AN ANNOTATED o THE MULTNOMAH COUNTY CAPS PROJECT: AN EFFORT TO COORDINATE SERVICE BIBLIOGRAPHY. Includes innovative strategies and programs $6.50. DEliVERY FOR CHILDREN AND YOUTH CONSIDERED SERIOUSLY EMOTIONALLY DIS­ o NEW! COLLABORATION IN INTERPROFESSIONAL PRACTICE AND TRAINING:AN TURBED. Process evaluation oj an interagency collaborative eJJort. $7 .00. ANNOTATED BIBLIOGRAPHY. Addresses interproJessional, interagency and o NATIONAL DIRECTORY OF ORGANIZATIONS SERVING PARENTS OF CHILDREN AND Jamily-proJess ional collaboration. Includes methods oj interproJessional YOUTH WITH EMOTIONAL AND BEHAVIORAL DISORDERS, THIRD EDITION. Includes collaboration, trainingJor collaboration, and interproJessional program 612 entries describing organizations that oJJer support, education, reJer­ and training examples. S7.00. ral, advocacy, and ot her assistance to parents. $12.00. o DEVElOPING AND MAINTAINING MUTUAL AID GROUPS FOR PARENTS & OTHER o NEXT STEPS:A NATIONAL FAMILY AGENDA FOR CHILOREN WHO HAVE EMOTIONAL FAMILY MEMBERS: AN ANNOTATED BIBLIOGRAPHY. $ 7.50. DISORDERS CONFERENCE PROCEEDINGS. 1988. Development oj parent organiza­ o FAMILIES AS ALLIES CONFERENCE PROCEEDINGS: PARENT-PROFESSIONAL COL­ tions, building coali tions, Jamily support services, access to educationa l LABORATION TOWARD IMPROVING SERVICES FOR SERIOUSLY EMOTIONALLY HANDI­ services, custody relinquishment, case management. $6.00. CAPPED CHILDREN &THEIR FAMILIES. 1986. Delegates Jrom thirteen western o NEXT STEPS: ANATIONAL FAMILY AGENDA FOR CHILDREN WHO HAVE EMOTIONAL states. $9.50. DISORDERS (BOOKLET). DeS ign ed Jor us e in educating administrators, :J FAMILY ADVOCACY ORGANIZATIONS: ADVANCES IN SUPPORT AND SYSTEM RE­ policymakers and advocates about children's mental health issues. Single copy: $2.50. Five Copies: $7.00. FORM. Describes and eva luates the development oj statewide parent organizations in 15 states. $8.50. o ORGANIZATIONS FOR PARENTS OF CHILDREN WHO HAVE SERIOUS EMOTIONAL :J FAMILY CAREGIVING FOR CHILDREN WITH A SERIOUS EMOTIONAL DISABILITY. DlSOROERS: REPORT OF A NATIONAL STUDY. Study oj 207 organizations Jor parents oj children with serious emotional disorders. Activities, program Summarizes a Jamily caregiviryg model employed in survey ojJamilies operation issues, training programs describ ed. $4.00. with children with emotional disabilities. Indudes review, questionnaire, data collection and analysis procedures and Jindings. $8.00. n PARENT-PROFESSIONAL COLLABORATION CONTENT IN PROFESSIONAL EDUCA­ TION PROGRAMS:A RESEARCH REPORT. Results oj nationwide survey oj proJes­ CJ NEW! FAMILY INVOLVEMENT IN POLICY MAKING: AFINAL REPORT ON THE sio/wl programs that involve parent-proJes sional collaboration. Includes FAMILIES IN ACTION PROJECT. Outcomes oJJocus group liJe history interviews; eIescriptions oj ineIivieIual programs. $5.00. Jive case studies oj involvement in policy-making processess; results oj survey data; implications Jor Jamily members and policy-makers. ::J PARENTS AS POLICY-MAKERS: A HANDBOOK FOR EFFECTIVE PARTICIPATION. $10.25. Describes policy-making bodies, examines advocacy skills, describes recruit­ o FAMILY {PROFESSIONAL COLLABORATION: THE PERSPECTIVE OFTHOSEWHO HAVE ment methods, provieles contacts Jor Jurther inJormation.$7.25. TRIED. Describes curriculum's strengths and limitations, eJJect oj training o PARENTS' VOICES:A FEW SPEAK FOR MANY (VIDEOTAPE). Parents oj chi ldren on practi ce, barriers to collaboration. $7.50 with emotional eIisabilities discuss their experiences related to seeking helpJor their chilelren (45 minutes). A trainers' gUide is avai labl e to assist FAMILY RESEARCH & DEMONSTRATION SYMPOSIUM REPORT. Summarizes :::J in presenting the vieleotape. Free brochure. recommendations Jrom 1992 meetingJor dev elopingJamily research and demonstration agenda in areas oj parent-proJessional co llaboration, :J RESPITE CARE: AKEY INGREDIENT OF FAMILY SUPPORT. CONFERENCE PROCEED­ training systems, Jamily support, advocacy, multicultural competence, INGS.1 989. Starting respite programs,financing services, building aeIvo­ andJinancing. $7.00. cacy, anel rural respite care. $5.50. o NEW! FAMILY SUPPORT AND DISABILITIES: AN ANNOTATED BIBLIOGRAPHY. o RESPITE CARE: AN ANNOTATED BIBLIOGRAPHY. $7.00. Family member relationships with support persons , service system Jor Jamilies, descriptions oj speciJic Jamily support programs. $6.50 . ::J RESPITE CARE: AMONOGRAPH. Types oj respite care programs, recruitment o GATHERING & SHARING: AN EXPLORATORY STUDY OF SERVICE DELIVERY TO EMOTIONALLY HANDICAPPED INDIAN CHILDREN. $4.50. fD fAll 199 5 PUBllCATIONS

and training ofproviders, benefits of respite services to families, respite care o TRANSITION POLICIES AFFECTING SERVICES TO YOUTH WITH SERIOUS EMOTIONAL policy and future policy directions, and funding sources . $4.50. DISABILITIES. Examines how state level transition policies ca n faCilitate transitions from the child service system to th e adult service system. o STATEWIDE PARENT ORGANIZATION OEMONSTRATION PROJECT FINAL REPORT. Elements of a comprehensive transition policy are described. Transition Evaluates th e development of parent organizations in five states. $5.00. poli cies from seventeen states are included. $8.50. "'] TAKING CHARGE: AHANDBOOK FOR PARENTS WHOSE CHILDREN HAVE EMO­ o WORKING TOGETHER FOR CHILDREN: AN ANNOTATED BIBLIOGRAPHY ABOUT TIONAL DISORDERS. Third edition includes CASSP principles, recent FAMILY MEMBER PARTICIPATION IN CHILDREN'S MENTAL HEALTH POLICY-MAKING changes in federal law, description of various disorders. $ 7.50. GROUPS. Ideas for enhancingfamily member participation and conceptual o THE DRIVING FORCE: THE INflUENCE OF STATEWIDE FAMILY NETWORKS ON models regarding increas ing parti cipation. $6.25. FAMILY SUPPORT & SYSTEMS OF CARE. Highlights 1993 activities of 15 :::J WORKING TOGETHER: THE PARENT/PROFESSIONAL PARTNERSHIP. Trainers' statewide family advocacy organizations. $9.00. gUide for a one-day workshop for a combined parent/profess ional audi­ o THERAPEUTIC CASE ADVOCACY TRAINERS' GUIDE: A FORMAT FOR TRAINING ence. $8.50. DIRECT SERVICE STAFF &ADMINISTRATORS. Addresses interagency co llabora­ o YOUTH IN TRANSITION: AOESCRIPTION OF SELECTED PROGRAMS SERVING ADO­ tion among professional s in task groups to es tablish comprehensive LESCENTS WITH EMOTIONAL DISABIlITIES. Res idential treatmen t, hospital and systems of care for children and their families. $5.75. school based, case management, and multi-servi ce agen cy transition o THERAPEUTIC CASE ADVOCACY WORKERS' HANDBOOK. Companion to th e programs are included. $6.50. Th erapeuti c Case Advocacy Trainers ' Guide. Explains the Therapeutic o LIST OF OTHER PUBLICATIONS AVAILABlE THROUGH THE RESEARCH AND TRAIN­ Case Advocacy model, structure of task groups, gro up process issues, ING CENTER. Lists journal articles, book chapters , monographs authored by eva luations. $4.50. Resea rch and Training Center members. Free.

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