i

Handbook on Family Involvement in Early Childhood Special Education Programs

California Department of Education • Sacramento • 1999

ii

Prepared for publicationby CSEA members.

Publishing InformationThe Handbook on Family Involvement in Early Childhood SpecialEducation Programs was developed by the Special Education Division,California Department of Education. It was edited by Ellen Broms,Consultant, Early Childhood Unit, Department of Education, and JanKearns, Codirector, Early Childhood Services, Shasta County Office ofEducation. Faye Ong, Associate Editor, CDE Press, provided assistance.The handbook was designed and prepared for printing by the staff of CDEPress, with the cover and interior design created and prepared by Paul Lee.Typesetting was done by Gloria Barreiro.

It was published by the Department of Education, 721 Capitol Mall,Sacramento, California (mailing address: P.O. Box 944272, Sacramento,CA 94244-2720). It was distributed under the provisions of the LibraryDistribution Act and Government Code Section 11096.

© 1999 by the California Department of EducationAll rights reserved

ISBN 0-8011-1464-0

Special AcknowledgmentThe Special Education Division extends its appreciation to Cindy Kerslake,Teresa Androvich, and Angela McGuire, the principal authors; and toMargaret Benavides, Consultant, Procedural Safeguards Referral ServiceUnit.

Ordering InformationCopies of this publication are available for $11.25 each, plus shipping andhandling charges. California residents are charged sales tax. Orders may besent to CDE Press, Sales Office, California Department of Education, P.O.Box 271, Sacramento, CA 95812-0271; FAX (916) 323-0823. See page 55for complete information on payment, including credit card purchases, andan order blank. Prices on all publications are subject to change.

A partial list of other educational resources available from the Departmentappears on page 53. In addition, an illustrated Educational ResourcesCatalog describing publications, videos, and other instructional mediaavailable from the Department can be obtained without charge by writingto the address given above or by calling the Sales Office at (916) 445-1260.

NoticeThe guidance in Handbook on Family Involvement in Early ChildhoodSpecial Education Programs is not binding on local educational agenciesor other entities. Except for the statutes, regulations, and court decisionsthat are referenced herein, the document is exemplary, and compliance withit is not mandatory. (See Education Code Section 33308.5.)

STATE

OF CALIFORNIA

DE

PA

RTMENT OF EDUCATION

iii

Preface ................................................................................................................................ v

Message from the Authors ................................................................................................ vii

The Value of Family Involvement and Parent-Professional Collaboration ........................ 1

Entry into the Early Intervention Program ......................................................................... 7

Family Involvement Activities in Early Intervention Programs....................................... 12

The Transition from an Early Intervention Program to Preschool ................................... 16

Family Involvement Activities in Preschool .................................................................... 19

Parent Education ...............................................................................................................24

Support Groups .................................................................................................................29

Family Resource Centers .................................................................................................. 35

Afterword ......................................................................................................................... 38

Appendixes

A. Requirements of the Education Code..................................................................... 39

B. Strategies for Making the Classroom Friendly ....................................................... 40

C. “Where’s Daddy?” by Bob Lawler ......................................................................... 42

D. Ten Signs of a Great Preschool ............................................................................... 44

E. Language and Cultural Barriers .............................................................................. 45

F. Guidelines for Working with Interpreters ............................................................... 46

G. Qualifications of Interpreters .................................................................................. 48

H. Parent Support Groups ........................................................................................... 49

Selected References .......................................................................................................... 51

Tables

1. What Makes Collaboration Work ............................................................................. 3

2. Family Involvement Activities ............................................................................... 14

3. National Standards for Parent/Family Involvement Programs ............................... 19

4. Ideas for Parent Involvement Activities in Preschool ............................................ 20

5. Barriers to Parent Involvement in the Classroom................................................... 22

Contents

v

The early years are the foundationfor a child’s healthy develop-

ment and readiness forlifelong learning. For youngchildren with disabilities,development and learning in

the early years depend on thequality of early intervention services.This handbook provides information onthe development and maintenance ofquality programs, the statutory andregulatory requirements, and the re-sources available to local educationalagencies to support those programs.

Background

Infant and toddler and preschool specialeducation programs and services havechanged substantially in recent years. Theimplementation of Senate Bill 1085 in1993 established the Early Start inter-agency program in collaboration with theCalifornia Department of DevelopmentalServices (DDS). This program providesearly intervention services that are indi-vidually designed for infants and toddlersfrom birth through two years of age.Funding is provided under Part C of theIndividuals with Disabilities EducationAct (20 USC Section 1471 et seq.) todevelop innovative ways of providing

Preface

family-focused, coordinated services thatare built on existing systems.

Preschool special education pro-grams received a boost from the federalgovernment with the expansion of fundingand eligibility categories for children withdisabilities between the ages of three andfive years under Title II of the Educationof the Handicapped Act Amendments of1986, Public Law 99-457 (20 USC sec-tions 1411, 1412, 1413, and 1419). Cali-fornia State Law, Chapter 311 (AB 2666,Hannigan, Statutes of 1987), establishedprogram standards for all preschoolerswith exceptional needs in California. Priorto enactment of this law, public schools inCalifornia were mandated to serve onlypreschool children requiring intensivespecial education and services.

Principles of Early ChildhoodSpecial Education ServiceDelivery

The handbooks in the Early ChildhoodSpecial Education series are based on thefollowing principles:

• Early childhood special educationprograms must be child-centered.

• Programs should be family-focused.• Programs should be culturally sensitive.

vi

• Collaborative interagency coordinationis the most efficient and effective wayto provide services to families.

• Programs should provide trans-disciplinary approaches to assessmentof children and delivery of services.

• Programs should provide opportunitiesfor staff development.

• Program evaluation is a necessarycomponent of special education pro-grams and services.

Purpose of the Handbook

The Early Education Unit of the SpecialEducation Division, California Depart-ment of Education, is providing staff inthe field with a resource that presentsquality criteria for best practices in pro-gram development, ideas, and concepts inthe context of the statutory requirementsfor early childhood special education

programs. New federal and state statutesand changed regulations and fundingmechanisms have affected the provision ofservices for young children with disabili-ties. Such changes make it necessary toupdate and expand the Preschool SpecialEducation Program Handbook (publishedin 1988) to include information on theinfant and toddler early interventionprograms.

Each handbook in the Early Child-hood Special Education series describescore concepts and best practices that arebased on an in-depth review of currentliterature, statutes, and regulations. Thesehandbooks may be accessed on theDepartment’s Web site.

We thank the parents and educatorswho contributed the ideas in this handbookto make it a valuable resource for adminis-trators, teachers, and family members.

HENRY DER

Deputy SuperintendentEducation Equity, Access, and Support Branch

ALICE D. PARKER

DirectorSpecial Education Division

vii

This Handbook on Family Involve-ment in Early Childhood SpecialEducation Programs is written byparents of children with develop-

mental disabilities. The chil-dren participated in a county

infant development program,attended public preschools and elemen-tary schools, and are clients of regionalcenters. The three families came togetherto work on this handbook collaboratively.The handbook is based on the followingbeliefs:

• The relationship between a parent andchild is at the heart of parent involve-ment.

• Parent involvement is critical tochildren’s success in school and in life.

• Parent-professional collaboration is thekey to encouraging parent involvement.

This handbook gives service provid-ers an understanding of what familiesneed in order to be effective in theirinvolvement with their children, theirchildren’s education, and the community.We also want to present some recom-mended practices in family-focusedservices.

Message from the Authors

Our knowledge is still unfoldingover the years on the journey that beganwith the birth of our children. We allexperienced the pain that comes with theloss of the “normal, healthy” baby that wehad expected and prayed for, but at thesame time we fell in love, heart and soul,with the baby we were given. At this pointin our journey, we are beyond the shockand confusion. We are at the “all right”stage. Coping is no longer a part of dailyliving. Life is really okay.

In the words of Florene S. Poyadue:“Parents experiencing the appreciationstage not only accept the fact that theirchild has a disability (mental retardation)but that the presence of the disability isreally all right.”1

It is important to make this pointbecause one of the most difficult chal-lenges we have as parents is overcomingsociety’s negative view of disability.Wouldn’t it be wonderful if all of societycould reach the appreciation stage? Thesolution is relatively simple. The appre-ciation stage is merely a process of enjoy-ing positive experiences with our childrenin settings natural to families with youngchildren and sharing those experiences

1 Ann P. Turnbull and others, Cognitive Coping, Families, and Disabilities. Baltimore: Paul H. Brooks Publish-ing Company, 1983, p. 103.

viii

with others. We are asking service provid-ers as partners in collaboration, with thevery best intentions for our children, tohelp us open the doors to these experi-ences.

A recent publication by the Partner-ship for Family Involvement in Educationcited 30 years of research that clearlyshowed that family involvement is criticalto children’s success in school and for therest of their lives.2 Congress echoes thisconclusion in the reauthorized version ofthe Individuals with Disabilities Educa-tion Act of 1997 (IDEA ’97): “Over 20years of research and experience havedemonstrated that the education of chil-dren with disabilities can be made moreeffective by strengthening the role ofparents and ensuring that families of suchchildren have meaningful opportunities toparticipate in the education of theirchildren at school and at home.”3 (Appen-dix A outlines the regulatory requirementsfor family involvement in the infant/toddler programs of local educationalagencies.)

To be effective primary caregivers,decision makers, teachers, role models,and managers with their children, allparents need confidence, guidance,information, and support regardless ofwhether or not they have a child with adisability. It just happens that those of usnavigating lives in the seas of disabilityhave an uncharted course and somechoppy water to cross.

As professionals with experience inhealth, education, child development,speech and language development, grossand fine motor development, and visionand hearing, you have the knowledge ofresources and services that can help usmeet the challenges of parenting a childwith a disability. We think a collaborativeapproach between professionals andfamilies is the best way to help childrenwith disabilities.

Cindy and Gary Arstein-KerslakeTeresa and Bob AndrovichAngela and Pat McGuire

2 Partnership for Family Involvement in Education, America Goes Back to School. Washington, D.C.: U.S.Department of Education, 1996.

3 Matrix Parent Network and Resource Center, “Matrix Supports Parent Participation and So Does Congress,”The Networker (Fall 1997), 5.

1

Involvement by parents and profes-sionals in the education system is oneof the most significant ways to im-

prove early intervention and preschoolprograms. This section discusses thebenefits of parent-professional partner-ships.

Family Involvement

Family involvement activitiesbegin at home with the interac-tions among family members and

especially between a parent anda child. Parents are lifelong

teachers, continuing to educatetheir children long after their childhood isover. They teach by their examples andmistakes. It is hoped that they can inspirea desire for learning, encourage familyvalues, model social skills, and guide theirchildren toward adulthood.

Families who are involved in theirchildren’s upbringing provide a solidfoundation of values and beliefs to sustainchildren throughout their lives. Wheneducational and other service agenciesprovide programs that build on a family’sown efforts to help their children, they arecontributing to the success of the family.

The Value of FamilyInvolvement andParent-ProfessionalCollaboration

The first step toward change inour education system is the in-creased involvement of parentsand other concerned adults.Improvement cannot and willnot happen without parents aspartners. Greater involvement,collaboration and interactionamong parents, students andschools will fuel the transfor-mation of American education.It all begins with the choice forsomething better. We must allact on that choice.

—Joan Kuersten, “Parents asPartners”

2

Parent-Professional Teamworkand Collaboration

A team is defined as two or morepeople who collaborate to attain agoal or objective. Collaboration is

defined as a process ofproblem solving by team

members, each of whom contrib-utes his or her knowledge and skills and isviewed as having equal status.1 An effec-tive working relationship with othersrequires collaboration, especially betweenfamilies and professionals workingtogether for the best interests of a childwith a disability.

Unfortunately, most people are nottrained in collaboration. Since 1992public schools, in response to the needs ofthe business world, have begun to restruc-ture the curriculum to include training andpractice in teamwork. Unless schooldistricts provide specific in-servicetraining, it cannot be assumed that eitherparents or professionals in early interven-tion programs know how to practicecollaboration. Such training is essential,particularly for professionals who must

1Mary Beth Bruder and T. Diane Hatcher, Transdisciplinary Teaming in the Preschool Classroom. N.p.: Divisionof Child and Family Studies, Department of Pediatrics, University of Connecticut Health Center, n.d., p. 1.

work together to provide services tochildren and families.

Early interventionists trained incollaboration can easily be role models forparents. Collaboration centers on mutualunderstanding, attitudes of respect, andsharing. Attitudes are contagious. If theprocess of collaboration and roles areexplained, parents, as invited members,can participate effectively on the collabo-ration team.

Table 1 represents a model of col-laboration for any team. The rubric isparticularly applicable for a parent-profes-sional team because it makes no assump-tions or caveats about the competencies orknowledge of the participants. Each of thedefining characteristics implicitly requiresrespect for each team member and theideas or information he or she brings to theprocess. Each team member is equallyresponsible for reaching goals, participat-ing in and making decisions, sharingaccountability for outcomes, and sharingresources. A collaborative process basedon mutual respect and sharing encouragesand enables all team members to be activeand valuable members of the team.

3

Table 1. What Makes Collaboration Work

Defining Characteristics What Works What Doesn’t

û Engaging in a long-termcommitment without havingestablished a relationshipwith team members

Mutual Goals üDevelop a relationship withteam members.

ü Engage in small-scale efforts.

ü Identify a shared philosophy.

VoluntaryParticipation

ü Invite the participation ofkey stakeholders.

û Working with only one ortwo individuals on somethingthat will affect many

Parity AmongParticipants

ü Use names, not titles, wheninteracting.

ü Rotate team roles (e.g.facilitator, timekeeper,recorder).

û Calling John Jacob ProfessorJacob instead of John

û Reserving the role offacilitator for a select few

Shared Responsibilityfor Participation andDecision Making

ü Share perspectives aboutdecisions.

ü Brainstorm before makingdecisions.

üClarify and identify actionsagreed upon.

üCoordinate tasks and dividethe labor according to eachmember’s resources.

û Assuming that tasks must bedivided equally and that eachparty must participate fully ineach activity

û Assigning responsibility fordecision making to oneindividual or party

Shared Accountabilityfor Outcomes

ü Acknowledge risks andpotential for failure.

üCelebrate success together.

ü Embrace failures together,adopting a mindset of learn-ing from failures.

û Trying to determine whomto blame

û Giving awards to individualsfor team efforts

Shared Resources ü Identify respective resources.

ü Establish mutual goals.

üHighlight the benefits ofsharing.

üMake decisions jointly aboutresource allocation.

û Protecting resources ratherthan revealing them

û Having no mutual goals anddisparate benefits

û Using one’s own resourcesafter depleting others’resources

Source: Mary Beth Bruder, Division of Child and Family Services, University of Connecticut Health Center, DECConference, San Diego, California, December 12, 1993. Reprinted in Ann Carr, Anne Kuschner, and JohnGunnarson, “Team Building,” in Building Success for All Children: Walking the Talk. Workshop Binder, Year One.Rohnert Park: California Institute on Human Services, Sonoma State University, 1995, pp. 3–4.

4

The following narrative describes an actual experience of collaboration between afamily and a service provider. Although the provider is from the medical field, the narrativeshows the characteristics of successful collaboration: mutual respect and trust. This approachmay be used by any service provider employed by any agency working with families.

Collaboration in Action

Parity Among Participants

The geneticist showed his respect by promptly greeting us himself and introducinghimself by his first name.

Mutual Goals

He showed us he was on our side, a part of the team, by sitting beside us. He demon-strated family focus by asking about our other daughter, Anna. He established a com-mon ground, parenting, when he told us about his efforts to understand his son’s feel-ings. His son was saying “I hate you” whenever something didn’t go his way. Weexchanged similar experiences about Anna.

Shared Responsibility for Participation

During his assessment, Dr. Smith2 assumed nothing and encouraged us to tell our wholestory while he listened carefully. We told him about the referral from the pediatricianand the initial inconclusive results of the genetic testing. He asked us about life withSara. What was her daily schedule like? What were her likes and dislikes? Did she cry alot? Was I nursing? How much did she eat? Was she still waking up at night? As weanswered his questions, he listened with empathy as though he’d heard our story beforeand encouraged us to expand on our responses. He enabled us to be an important part ofthe assessment.

The way in which he conducted the assessment modeled unconditional love and accep-tance. His words and actions demonstrated how much he valued and enjoyed my babyand validated our own positive feelings about Sara and her future .

After appreciating her healthy appearance, weight gain, and the developmental progressshe’d made, he showed us how far behind she was developmen-tally from other three-month-old babies. He confirmed hisassessments with the developmental specialist, carrying hernext door and sharing her like a treasure. Consulting withanother expert helped us to accept his assessment.

Voluntary Participation

At my pediatrician’s suggestion, we voluntarily made an appointment with a geneticisttwo weeks after my baby Sara was born. We chose to go on this fact-finding mission. Itgave us ownership of our part of the collaboration and of the outcome. It naturallyhelped commit us to the partnership. Our purpose in going was to try to find out for sureif anything was wrong with Sara and, if so, where we were to go from here.

2The name of the service provider has been changed.

5

Collaboration in Action (Continued)

Shared Accountability for Outcomes

Now it was our turn to ask: “Would she grow out of this? Would she ever be normal?”

Dr. Smith shook his head and said no, without any lengthy explanation or speculation.His answer was followed by a question for us: “What are your goals for Sara?” Myhusband said something about wanting her to be a contributing member of society, and Isaid I just wanted her to be happy.

Our next question was “Where do we go from here?”

Shared Resources

Options for pursuing a diagnosis were discussed. He explained that diagnosis is arrivedat by a process of elimination and then described the various kinds of tests. We askedquestions. He shared his thoughts on the alternatives and offered us a stack of booksfrom his office so we could do some of our own research. He also informed us aboutsupport services from the regional center and the county office of education’s InfantDevelopment Program. He made it clear that there were no quick, easy answers and thatuse of the support services was voluntary.

Shared Responsibility for Participation and Decision Making

Before we left his office, we had decided on a course of action. Dr. Smith concurredwith our decisions, and as we left the office, my husband and I felt as though we wererespected members of a team who had provided valuable information for our daughter’sassessment and had made informed decisions in planning for her future. On the wayhome we both cried, acknowledging that our Sara would never be normal. But wemoved forward, loving our daughter and talking about following up on our newly madeplans.

Parity Among Participants

Dr. Smith let us know that he was available any time to answer questions by phone orthat we could make another appointment to meet with him to discuss any questions.

Mutual Goals

We signed a consent form for Dr. Smith to continuing testing in pursuit of a diagnosis.

6

Parent Involvement inProfessional Teams

According to the CaliforniaInteragency CoordinatingCouncil on Early Intervention,as stated in Family SupportGuidelines for Effective Prac-

tice, “Every agency should en-sure that all agency staff receive

ongoing training and supervision infamily-centered service delivery.”3

Personnel development that includesparents as a part of the professional teammay be accomplished in the followingways:4

• Provide training in the philosophy andstrategies of parent-professional col-laboration.

• Have parents and professionals conducttraining in collaboration.

• Use specialized consultants and pro-gram assistants who are parents ofchildren who are disabled or at risk ofdisability.

• Hire qualified staff members who arealso parents of children who are dis-abled or at risk of disability.

Parents as professionals can be avaluable addition to any early interventionteam or preschool program. Adding aparent to a professional team offers someunique benefits because the parent:• Provides a readily available parent

perspective

3Linda Brekken, “Personnel Qualifications and Personnel Development,” in Family Support Guidelines forEffective Practice. Sacramento: California Department of Developmental Services, Interagency CoordinatingCouncil, Family Support Services Workgroup, 1994, p. 12.

4 Ibid.

• Lends credence to the organization as afamily-focused agency

• Helps to bridge the gap between par-ents and professionals

• Helps model parent-professionalteamwork.

• Improves the communication betweenparents and professionals

• Provides information about the activi-ties, resources, and needs of parents

• Validates the provider’s commitment toparent involvement

In some early intervention programs,parents and professionals from the FamilyResource Center are used as a part of theintake team helping to elicit a family’sconcerns, resources, and priorities. Be-cause of the parents’ personal experienceswith the assessment process, team mem-bers truly understand a family’s emotionalstate and confusion about the servicedelivery system and that families havedifficulty in verbalizing their needs andunderstanding their rights. In turn familiesmore readily trust and open up to a personwho has shared the experience of having achild with a disability. Parents can alsomake wonderful volunteers in the class-room. A parent’s presence can provide awelcoming, understanding atmospherethat facilitates family-to-school communi-cation, encourages parent involvement,and gives families confidence in theirchoice of early intervention programs orpreschools.

7

T he initial interaction that occursbetween parents and professionalsis an important event. Parents

often feel very vulnerablewhen they begin to use early

intervention services, andsometimes strong feelings

are close to the surface. Professionalsshould be aware of this and respect thosefeelings. As one parent wrote:

The foremost task of any parent is todevelop a deeply loving, mutuallysatisfying, nurturing relationship with hisor her child—the total child. This isimportant for the sake of both the childand the parent. Being a parent is prima-rily about being in a relationship withtheir child. The characteristics of such arelationship are:

1. The parent must have a positive viewof the child. She must accept and besatisfied with, even celebrate, thechild for who he is.

2. The parent must derive pleasure fromthe relationship with the child.

3. The parent must feel competent in therelationship.5

Entry into the EarlyIntervention Program

Short of having your child die,there is nothing more devastatingto a parent than to be told thatthere is something “the matter”with your child; your child is “notnormal.” . . . All parents havestrong feelings about their chil-dren. When they believe there issomething wrong with the child,then some of those feelings can bepain, anger, guilt, and anxiety.

—Lucia Milburn, “A Parent’sPerspective: Assessment andIntervention,” Infant DevelopmentAssociation Newsletter

5 Lucia Milburn, “A Partner’s Perspective: Assess-ment and Intervention,” Infant Development AssociationNewsletter (Spring 1991), 1–2.

8

Family involvement is a belief in thevalue of partnership that is shared byservice providers and families. The intakeprocess is a difficult time for families asthey are asked to identify and addresstheir child’s deficits. Several featurescharacterize agencies that encouragefamily involvement. When families arewelcomed into systems with these fea-tures, everyone can benefit and grow inthe process. The following sectionsidentify those features.

Family-Centered Focus

Each family has varyingneeds when beginning touse services. Somefamilies are aware of theservices needed and areready to enter the infant

or preschool program assoon as possible. Some can

identify their child’s needs or disabilitybut lack the information to request spe-cific services. Some have other familyneeds that must be addressed before they

can use specific services. All familiesneed to have their concerns and prioritiesacknowledged and addressed throughoutthe process. The California InteragencyCoordinating Council on Early Interven-tion states: “Services and support will bestmeet the needs of families by focusing onthe entire family and building on thefamily’s strengths, respecting culturalpreferences, values, and uniquelifestyles.”6

Coordinated Processes

The process of intake and assess-ment may be emotionally taxingand time-consuming for families.

When no relationships have beenestablished between the parent andagency staff, requesting personal informa-tion from the family may be uncomfort-able. When the pr ocess is not coordinated,these requests may be repeated numeroustimes as a family is referred to differentagencies at initial intake and duringtransition to a new program. Repeatedassessments place undue stress on a

Families are big, small, extended, nuclear, multi-generational, withone parent, two parents, and grandparents. We live under one roof,or many. A family can be as temporary as a few weeks or as per-manent as forever. We become a part of a family by birth, adop-tion, marriage, or from a desire for mutual support. . . . A family isa culture unto itself, with different values and unique ways of real-izing its dreams; together our families become the source of our richcultural heritage and spiritual diversity. . . . Our families createneighborhoods, communities, states, and nations.

— From Family Support Guidelines for Effective Practice:Recommendations of the California Interagency CoordinatingCouncil on Early Intervention

6 Family Support Guidelines for Effective Practice: Recommendations of the California Interagency Coordinat-ing Council on Early Intervention. Sacramento: California Department of Developmental Services, 1994, p. 22.

9

family because the focus often must be onthe child’s deficits rather than on theparent-child r elationship. Although theassessment process is necessary, thefamily’s best interests are served whenthis process is coordinated, with agenciescollaborating to share information asneeded and permitted by the family.Without coor dination, ther e may be a lossor delay of valuable services.

Intake and assessment is a processthat involves many steps. When agencieswork together to coordinate this process,the family’s access to services is easier.Service coordinators are responsible forproviding consistent and accurate infor -mation. The ser vice coordinator mayimmediately refer a new family to aFamily Resource Center . The parent-professional staff of the Family ResourceCenter can assist the family through theinitial individualized family service plan(IFSP) process and establish an ongoingrelationship with the family.

Proactive Strategies

Parents need to receive complete andclear information about the servicesthey will receive. Service deliverymay appear to be a complex pro-cess to families. The best practice

is for service providers to givefamilies the full range of availableinformation, resources, and services.

A study conducted by Parents HelpingParents (PHP) indicated that as informa-tion and resources to families increased,their need for outside support decreased.Families in the study were given informa-tion on available community resources,parent and child rights, particular disabili-ties, and financial supports. In addition,they were connected with other familieswho had been through the process.

When parents and guardians aregiven information and resources, they

become empowered to identify and seekout resources and supports needed fortheir child and family. Having the sameinformation that is available to profes-sionals helps them become equal partici-pants on the team that is working in apositive and productive direction for thechild and family. One way to ensure thatfamilies have all the information theyneed is to provide them with a resourcebinder that can be referred to and updatedover time. Ideas for establishing a friendlyenvironment in the child care center areprovided in Appendix B.

Maximum Parent Involvement

All parents or guardians are involvedin the intake and assessment

process to some degree.Parents’ concerns, priorities,and needs must not only beelicited but also be acted

upon as the building blocks for the IFSP.Parents have a right to know all theservice options for their child and be apart of the decision to enter their child inthe early intervention program.

Because parents are the experts ontheir baby’s behavior, they are an impor-tant source of information during theevaluation and assessment process. Theyknow the child’s likes and dislikes,favorite toys, and feeding and sleepingschedule. It is important to remember thatalthough parents are experts on their baby,they may not be experts in the jar gon ofearly intervention. Asking open-endedquestions, such as “Tell me about thesounds your baby makes” or “Tell memore about how you feed your baby,” willhelp elicit the information that is neededby professionals. Some cultures do notencourage parent involvement in theeducation of a child. Such cultural valuesmust be respected while eliciting informa-tion from the parents.

10

Maximum parent involvement doesnot imply that the parent becomes theinterventionist. “A parent must refuse tobecome just a teacher, therapist or servicecoordinator in order to be true to theirprimary task as a parent—to nurture thewhole child in the context of a loving,deeply satisfying relationship based onacceptance, respect and joy.”7 Each parentdetermines his or her own level of in-volvement according to family needs andother commitments and responsibilities.

Parent-to-Parent Interactions

Parents look to others in similarsituations to be a source ofstrength and information. Every

service provider from themedical field, therapists,

social workers, teachers, andothers must believe in the power ofconnections with others. From the verybeginning of the parent’s involvement inthe early intervention program, the agen-cies involved can play a major role insupporting parent-to-parent connectionsby providing support groups, socialgroups, playgroups, and educationalactivities, depending on the needs ex-pressed by the families.

Timely Delivery of Services

Parents need systems that canrespond quickly to the rapidlychanging needs of their young

children. It is important to ensure thatagency processes and paperwork do notdelay services and cause frustration,anger, or stress for the families. Whenagencies collaborate on establishing achild’s eligibility for services, time issaved and the service systems can beprimarily concerned with addressing theneeds of the child and family. The parentcan remain free to concentrate on main-taining the health of the family .

Once needed services have begun,parents can move forward in a productiveand healthy way. Parents will feel a senseof normalcy and wellness throughout thecollaborative process. Their focus shifts totheir child’s growth and development andto their dreams for the future.

The following activities help in-crease parent involvement in obtainingearly intervention services:

1. Assisting with parent-to-parent connec-tions

2. Establishing a multiagency approach tointake and assessment when initiatingservices and during transitions

There is considerable variability as to the role and degree of controlfamilies want to assume during the evaluation and assessment pro-cess. Even if parents choose to do no more than observe, the pro-cess of engaging them as “active” observers is still a step in figuringout the family’s desired outcome for the child. If the family doesn’tfeel involved, nothing will change.

—From Carol Berman, “Family-directed Evaluation and Assessmentunder the Individuals with Disabilities Education Act (IDEA): LessonsLearned from Experiences of Programs and Parents,” Zero to Three

7 Lucia Milburn, “A Parent’s Perspective: Assessment and Intervention,” Infant Development AssociationNewsletter (Spring 1991), 7.

11

3. Supporting and collaborating withFamily Resource Centers and otherparent support groups and referringparents to them

4. Providing frequent, community-basedparent education programs based on theneeds of families

5. Planning collaborative workshopsattended by parents and professionals

6. Assembling information packages onservices, specific disabilities, and

current information on communityresources

7. Encouraging parent participation onadvisory committees, boards of direc-tors, and program planning and evalua-tion teams

8. Providing professional support andadvice to parent support groups

9. Participating in community outreachactivities

12

Family InvolvementActivities in EarlyIntervention Programs

Practitioners who work directlywith very young children and theirfamilies need supportive collegialand supervisory relationships toserve children and families effec-tively. [What is necessary] for pro-grams to flourish is a managementstrategy that is committed tomodeling strong, mutuallyrespectful relationships—relation-ships between parents and chil-dren, relationships betweenfamilies and staff, relationshipsamong participating families, andrelationships among staff and withother community organizationsand service providers.

—From Keith Lally, “Early HeadStart: The First Two Years,” Zeroto Three

A s a child grows older, gains moreskills, and needs less care, theparents are better able to partici-

pate in activities beyond those ofmeeting essential needs. At this

stage, parents may need theopportunity to talk with other

parents of children with disabilities.Family playgroups or parent educationcoffee hours (with child care provided)are informal support activities that canpromote both parent involvement andinteraction with other parents.

As early as possible, parents need todevelop natural support for their chil-dren—that is, develop relationships withthose in their neighborhood and commu-nity. Parents can do this by participatingwith their children alongside parents ofchildren without disabilities in a variety ofstimulating parent-child activities. Earlyintervention programs may facilitate thiskind of interaction by sponsoring commu-nity activities for parents and toddlers,such as a music program or playgroup; orprofessionals can partner with local parksand recreation departments, encouragingparents to participate in parent-childprograms and providing informationabout and support for children withdisabilities.

13

To ensure success, staff must includeparents when planning family involvementactivities. Conduct a needs assessment todetermine the types and locations of ac-tivities desired and the best times forscheduling the events. In addition, evalua-tions conducted after planned events, atmid-year, and at year end are useful inassessing activities and making changes toserve families better.

Community-Based Services

When services are centered inthe community, families ben-efit in many ways. Eachcommunity is unique, andchild and family needs are

different at each developmentalstep. It is important to support families inmaintaining connections in their estab-lished communities when they have achild with special needs. Children canlearn in natural environments—the com-munities where they live—and receivesupport from community connections.Services for families should be deliveredin a way that promotes and builds on sup-port from the community.

Community connections include ex-tended family, church programs, neighbor-hood schools, playgroups, co-ops for childcare, recreational programs, and localchildren’s organizations. Family membersor siblings may already be involved in

community activities. Individual familiesbenefit from this connection as well as thecommunity as a whole.

Collaborative Process

With collaboration as a basic valueof all providers, the family can

quickly form the relationshipsnecessary to obtain appropriate

services for the child. These rela-tionships make it easier for individual ser-vices and supports to come together.

Multiagency teams are a good ex-ample of the collaborative process in ac-tion. The par ent or guardian is an importantmember of the team. Other team membersmay include another parent (possibly fromthe local Family Resource Center), repre-sentatives from agencies providing ser-vices, members of community groups,extended family members, child care pro-viders, or anyone else who is needed tocomplete the pictur e. Team members meettogether to form a common plan and pro-duce a single report, make recommenda-tions, and complete an IFSP based on theneeds identified by the team. Some activi-ties may be completed by individuals,while others, such as assessments, may beconducted by the team. When this type ofplan is developed, everyone benefits. Allindividuals become more capable, compe-tent, and responsible as a result of theirinvolvement in a collaborative team.

14

Administrators may plan familyinvolvement activities that are appropriatefor families of children ages birth to fiveyears. One benefit of combining familyinvolvement activities for infants, tod-dlers, and preschoolers is that parents of

younger children meet parents of olderchildren and develop friendships thatprovide support. Another benefit is thatexpanding the age range to include othersincreases the chance for success of theactivity. Table 2 shows family involve-

School- or Center-Based Activities

• Parent support groups• Parent-professional training• Sign language classes• Parent advisory committees• Involvement in community activities, such as:

—Parent-toddler gym—Mommy and Me swimming—Parent-tot music time—Parent-toddler creative playtime

• Playgroups• Parents’ Night Out—an opportunity for parent education, such as

presentations or demonstrations of various stimulating homemade toysor therapy approaches, with on-site child car e provided by staff

Social Activities

• Family picnics and potlucks• “Second cup of coffee”—drop-in or scheduled coffee hour• Mom’s Night Out• Dad’s Night Out• Quarterly family gatherings• Play day in the park

Celebrations and Special Events

• Annual reunion—evening or weekend• Holiday celebrations• Volunteer appreciation• Beginning and end-of-year picnics

Community Events

•̀ Week of the Young Child• Information fairs• Special Olympics• Team presentations to medical community• Ability awareness days• Multicultural events• Stand for Children Day

Table 2. Family Involvement Activities

15

ment activities for parents of both infantand preschool children with disabilities.

At times professionals expressconcern and frustration when parents donot respond to repeated invitations tofamily involvement activities. School andprogram staff may not realize that, if thereis no extended family in the area, parentsmay feel that they are the only ones whocan provide their baby’s care. Even ifthere are two parents working full time,the chances are that one parent spendsmore time taking care of their infant’sbasic needs. This primary care providermay become isolated from spending somuch time taking care of a child with adisability. Parents often abandon socialactivities, interests, and hobbies in caringfor a child with a disability.

Parents may not be able to do morethan attend scheduled meetings andappointments. They may not even find thetime to work on the activity cards left bythe teacher the week befor e. Although

parents may not get involved in all theactivities, they do appreciate the supportand encouragement of professionals.Home visits by professionals or visits tothe center may be the only opportunityparents have to discuss their baby’sprogress and talk about how they aremanaging as a family.

Helping a family member to takecare of himself or herself may be a pre-requisite to further participation in familyinvolvement activities. Ther efore, respiteservices are invaluable, as are purelysocial activities unrelated to any issues ofdisability. For example, one program, incollaboration with the local FamilyResource Center , invited students from amassage certification program to providean evening of massage sessions for one oftheir monthly Mom’s Night Out meetings.A fathers group is another important formof support to parents. (See Appendix C,“Where’s Daddy?”)

16

A t least six months before a child’sthird birthday, parents need toconsider preschool options. The

service coordinator or other early inter -vention staf f member with whom theyhave developed a trusting relationshipprovides advice, presents the options,leads parents in planning, and helps themcomplete the paper work. When the transi-tion individualized education program(IEP) emerges from this process, parentscan be confident and prepared members oftheir child’s IEP transition team.

Explore Preschool Options

All parents want the best for theirchildren. Many families with children

entering preschool spend time observ-ing preschools to select the one that

best meets their child’s and family’sneeds. A tool to help par ents in identi-

fying an appropriate program is providedin “Ten Signs of a Great Preschool” (seeAppendix D). Families whose childrenmay or may not qualify for special educa-tion at age three and are leaving an earlyintervention pr ogram undergo the sameprocess. The only difference is the amountand type of information the parent willneed to make meaningful, informedobservations and decisions. Families needto see and understand various types ofspecial education classrooms and regularearly childhood education classrooms.

The Transition froman Early InterventionProgram to Preschool

In building a vision of their child’sfuture, parents frequently dreamthat their child has normal oppor-tunities. For me and my daugh-ter, there was no better place tostart than the neighborhoodparent-participation preschool.This is where parent participationand parent education are an inte-gral part of the program; whereall mothers are struggling to fig-ure out if their child is in a nor-mal state of development; whereteaching social skills is a naturalpart of everyday interaction withthe kids; where baby-sitting co-ops form; where friendships andnatural supports are built everyday; and where exploration, dis-covery, and development thrive.But, best of all, it’s where a fam-ily with a child with a disabilitycan be a normal part of theircommunity.

—Cindy Arstein-Kerslake, Parent

17

They have a legal right to be informed ofall placement options for their child.Providing parents a mini-course in bestpractices in early childhood education thatincludes special education and a checklistof standards from which they can maketheir assessments will support them inmaking informed decisions for their child.After observing the alternatives, they mayneed to meet with the transition team todiscuss available options to meet theirchild’s needs. Once the placement deci-sion has been made, the early interventionstaff can help the par ents and child meetthe preschool staff.

Create a Vision

In deciding which preschool envi-ronment can meet their child’ s

needs, parents need help articu-lating where they want to seetheir child in the world. Often

they have hopes from the day their childwas born and, at this point, their dreamsneed to be expressed aloud. Parents mayneed some help creating a vision byverbalizing and describing it.

Creating a vision has been used inthe education system by schools embark-ing on restructuring and new schoolsbefore they begin design and construction.

The process brings together parents andprofessionals in building dreams of abetter school system for their children.The group decides on goals and objectivesthat coincide with the dreams and exam-ines the resources and options that canmake these dreams a reality.

This same kind of process, on asmaller scale, helps parents ask them-selves the following questions:

• What do we want for our childrenacademically, socially, physically, andemotionally?

• What kind of support in the school,neighborhood, and community isneeded to make these dreams a reality?

• What kinds of extracurricular activitieswill support and promote these goals?

• What are the preschool options thatsupport and promote these goals?

A group of parents and professionalsworking together to create a vision canhelp answer these questions and at thesame time provide a positive outlook forthe future; it is a wonderful exercise inteam building and collaboration. It servesto educate, inspire, and open new doorsfor everyone involved. Most immediately,it gives parents and professionals an ideaof directions to pursue in determiningpreschool services.

Parents’ Vision for Their Children

• We want our children to be happy.• We want our children to progress developmentally.• We want our children to be safe and free from ridicule.• We want our children to have appr opriate social skills.• We want our children to have friends who love them for who they ar e.• We want our children to be invited to bir thday parties.• We want our children to feel loved and accepted by our community.• We want our children to reach their greatest potential.• We want our children to be involved in fun after -school activities with

neighborhood friends.• We want our children to have similar oppor tunities as their same-age

peers and siblings have.

18

Plan the Transition

Informed families who understandthe preschool program and partici-

pate in choosing a preschool andservice provider are likely to beinvolved preschool parents.

Families who were not involved in select-ing the preschool are less likely to be com-mitted to the choice and may not want tobe involved in the pr eschool program’sactivities for families.

Hosting a transition fair is a strategyused by many school districts to provideinformation on resources, including transi-tion and preschool options, to more thanone family at a time. Representatives fromlocal school districts, the local resourceand referral agency, Head Star t, child careprograms, various types of preschools, andany agency that offers an early childhoodeducation program could present informa-tion about their preschools at a centrallocation. This type of event r equires inter-agency collaboration in putting on the fairand provides a valuable educational expe-rience for parents and staff alike. It alsohelps parents to review their placementoptions and select preschools for visits.

The Individuals with DisabilitiesEducation Act of 1997 ( IDEA ’97), withits emphasis on the least restrictive envi-ronment, provides funding and programpolicies that allow for a child’s placementwith typically developing peers. Familyand staff should consider the regular earlychildhood settings in their community anddesign the necessary adaptations to ac-commodate the child’s special needs.

Parents may wish to visit variouspreschools. A professional or a trainedparent leads or coordinates the visit and

provides insight into what parents are ob-serving.

The multidisciplinary transition team,which includes the parents, determines thatthe child is eligible for services; an IEP isdeveloped; and an appropriate program,including placement and necessary supportand adaptations, is selected that meets therequirements for achieving the IEP goals.The parent provides suggestions and is anintegral member of the team.

Preschool teachers may want to visitthe infant program to see how the childbehaves and works in the classroom set-ting. Teachers armed with this informationcan provide a smoother transition betweenthe infant and preschool programs.

Say Good-Bye

It is important to have atime for children andfamilies to say good-byeto those who haveworked with them in theprogram. Celebrations

help ease the transitionprocess. Families have the opportunity tothank staf f for their friendship and support.The staff, having developed a relationshipwith the family, can acknowledge thatrelationship. Parents and professionalstogether are able to stop and take time torecognize the accomplishments of thechildren. As a team, they can appr eciate theresults of their hard work in supporting thegrowth of the children.

A celebration is held to acknowledgeeveryone’s work, accomplishments, andfriendships. Parents are invited to attend afarewell party on the child’s last day of theinfant program.

24

Parent Education

Before designing a parent educa-tion program, the professionals

involved need to examine thegoals, expectations, and priorities

of the early childhood specialeducation program as a wholeto consider their impact on the

parent education program.As children with special needs leave

the infant or preschool program, theirparents also need to leave with skills thatwill enable them to raise their childrenwith understanding and effectively partici-pate in their children’s education andservices. Parent education provides afoundation for the child’s future.

The Parent Education ResourceManual (Rosen and others 1982) providesguidelines for developing a parent educa-tion program suitable for any parent group.They may be used to build parent educa-tion programs that are truly responsive toparents’ needs and that will result inparents better prepared for parental respon-sibilities beyond the world of early inter-vention services.

The following guidelines may helpadministrators to develop an effectiveparent education program:

• Define the audience.• Assess the audience’s needs and experi-

ences.

The goal is not an end—a parentprogram—but a process towardsatisfied and self-actualizingparents and effective home-schoolrelationships. The ultimate goalis one which is shared by both theparents and the school: . . . peoplewho are independent, self-sufficient, and participatorymembers in their own community.

—From Roslyn Rosen and others,Parent Education Resource Manual

25

• Involve parents in the planning process.• Solicit and select topics relevant to

parents.• Select appropriate delivery models

based on sound adult learning theory.• Recruit experts and gather other re-

sources.• Schedule joint parent-professional staff

development opportunities at timesconvenient for both staff and families.

• Design an evaluation process andmechanisms for incorporating evalua-tion data into the program.

• Plan an ongoing series of activitiesdesigned to meet the objectives of theparent education program.

Define the Audience

Parents of children with disabili-ties have their own personality,cultural background, lifestyle,and educational background,

which may include training in aprofessional field. Each parent’s level ofacceptance of the child’s disability willvary as will the parent’s comfort levelwith professionals and other parents.

Assess Needs and Experiences

It is important to discover eachparent’s needs and experiences

without making assumptions. For ex-ample, a parent may or may not haveknowledge about child development ordisabilities and may or may not be griev-ing. Generally, with parents new to theworld of special education, an informalstyle of questioning and presentation ismost effective. “Tell me about your child”is warmer and less intimidating than“What is your child’s diagnosis?” or “Whywas your family referred for early inter-vention?” Usually, once parents feel com-fortable to speak freely, they will do so.

Involve Parents inthe Planning Process

Parents new to special educationmay not know what they want orneed or what questions to ask.

However, they may still have needs andquestions. Ask parents to assist in plan-ning. Discuss with them:

• How they want information presented• What they want to learn

A good idea is to invite parents ofchildren who have graduated from theprogram to a meeting to share with currentparents what they liked about the programor wished they had known five yearsearlier.

26

Solicit and Select TopicsRelevant to Parents

Preschool or kindergartensurvival skills may be a topicof great interest. Parents wantto know what will be expected

of their children at school andwhether their own expectations are

reasonable. This information may help insetting goals at an IFSP or IEP meeting oras an introduction to the concept of leastrestrictive environments.

Select AppropriateDelivery Models

Typical sites for parent educationclasses are the classroom, a clinic,or a home. Classes at a popularsocial spot in town, such as a

coffeehouse, restaurant, clubhouse, orpark, may be more inviting to parentsburned out on institutional settings suchas schools and hospitals. Many sites areopen at hours that will accommodate aparent group or have rooms available forgroups of various sizes. Usually the costis not prohibitive, and parents who have aguilt-free reason to leave their childrenand possibly expend precious respitehours may find the class an opportunity totreat themselves to something worthwhile.Some parents who have retreated fromcommunity life in their efforts to copewith the new situation of having a childwith a disability may be drawn out in thisway.

Another alternative is to hold meet-ings at a zoo or community play place,where children may be accompanied bystaff or child care providers if necessary,and education may be meshed with fun.Consider providing transportation, eitherto bring the parents to the program or theprogram to the parents. When bus trans-portation is furnished for a field trip,parent education can be successfullyprovided during the ride to and from theevent. Additionally, meetings in thecommunity provide an opportunity forsome good public relations exposure foryour program and for families and peoplewith disabilities in general.

Parent participation is one of themost powerful methods of parent educa-tion. Parents may attend every seminaroffered, read the latest bestsellers in childdevelopment, and consult with as manyexperts as they can reasonably reach, butthe information does not become real untilthey apply it. Opportunities for parent

Topics for Parent Education

• Special education terminology

• Parenting skills and concepts

• Transitions

• Child development

• Legal rights under the IDEA and theconcept of least restrictive environ-ment

• Preparing for independence

• Behavior management

• Positive discipline

• Sibling relationships

• Understanding disability

• Community resources

• Summer/vacation activities

• Traveling with children

• Computer technology

• Toys: buying, making, and adapting

• Taking care of yourself

• Characteristics of quality programs

• Storytelling

• Finding time with your spouse

• Cooking for or with children

• Finding a pediatrician or dentist

• Useful catalogs/resources

• Nutrition recommendations

• Brain development

• Early literacy

27

participation are abundant. Parents can beinvolved in implementing parts of theirchildren’s educational programs by doingthe following: work on exercises at homeor in a group, plan activities for thechildren, host or assist with field trips,make adaptive equipment, or preparematerials for the school or for home use.Participation on boards and advisorycommittees is immensely educational;other committee members are usuallyglad to answer a newcomer’s questions.

Some programs have used parents astransition coordinators. With guidancefrom early intervention staff, parentsresearch and visit preschools, apply foradmission if necessary, develop an IEP,select an optimal placement, and followup with the preschool chosen. This type ofexperience builds parents’ confidence andenhances parent-professional relationshipsthat are built on mutual respect and sharedknowledge. Parents learn to question, totrust what they know about their children,and to know that their opinion is valued.

Recruit Experts and GatherOther Resources

The early intervention programdoes not need to be the sole

source of information andeducation for parents of

children with disabilities. Com-munity resources are also available, suchas other agencies, service organizations,and regular education early childhoodteachers. All parents of children with

disabilities share similar concerns andwill benefit from parent education pro-grams that are available in the generalcommunity. Shared training also providesan opportunity for parents to talk aboutdisabilities and inclusion.

Provide Staff DevelopmentOpportunities

Invite currently and previouslyenrolled parents to assist with

staff development training.Angela McGuire described

her participation in training:I had the opportunity to be part of apanel of parents interviewed for thebenefit of an audience of early interven-tion staff at a mid-year in-service. Myfamily had just moved to Californiafrom Indiana. I don’t think we had evenbegun receiving services yet. The staffwas interested in finding out whatprograms in other states were doing; Ijust loved talking about my baby girl.Additionally, I made some valuableearly contacts with professionals in thedistrict. It was, I think, a valuableexperience for all of us.

Consider visiting other early inter-vention programs. Many exemplaryprograms welcome visitors. The SEEDSProject ([916] 228-2379) at the Sacra-mento County Office of Special Educa-tion, under the direction of the CaliforniaDepartment of Education, has establishedvisitation sites throughout the state.

There is also a wealth of knowledgeto be gained from experts in the field of

Non-participation should not be construed as lack of theparents’ interest or concern. . . . Rather, the programdelivery method should be analyzed to determine whetherit meets the parents’ needs.

—From Roslyn Rosen and others, Parent Education Resource Manual

28

early childhood education. Presentersprovide workshops, lectures, and seminarson a variety of topics, from working withparents to the importance of storytellingand song in the education of the veryyoung child. Often, training sessions orpresentations are sponsored by localcommunity agencies or groups such as theresource and referral agency or the localchapter of the Association for the Educa-tion of Young Children (AEYC).

Training for parents and profession-als on consecutive days may be a cost-effective way to stretch training dollars.An evening session for parents allows aspecial speaker to address a topic ofinterest to both staff and parents. Presenta-tions may also be opened to the generalpublic to educate the community aboutearly childhood issues and the importanceof early intervention services. Staff devel-opment should be scheduled at timesconvenient for staff and families.

Design an Evaluation Processas Part of the Program

The purpose of evaluation is tofind out whether the parenteducation program is deliver-

ing correct, useful informationand training to parents and to redesign theprogram as needed. A parent satisfaction

survey may not provide the kind of infor-mation that is needed. Evaluation takesmany forms: records of attendance atparent education events, personal contactwith individual parents to assess under-standing, or a mini-quiz or survey follow-ing presentations. It is important to passon the information collected, in a tangibleform, to the parent-professional teamresponsible for planning future parenteducation opportunities.

Plan Activities to Meet Objectivesof the Parent Education Program

The educational needs of parentschange over time. Parents newto the program are being bom-barded with meetings, forms,

specialists, and concerned friends andrelatives. They may need definitions,explanations of diagnoses and procedures,coping skills, or skills for getting throughthe day with their newborn. Later, parentswill be ready for broader planning andlooking to the future. They may wantinformation on disability rights, nationalorganizations, or advocacy training. How-ever, parents will be at varying stages ofdevelopment in any program at any time.Therefore, workshops that meet the needsof parents with a variety of interests shouldbe offered repeatedly and concurrently.

29

Support Groups

Families having a child with adisability need help in coping withtheir feelings and their relationships

with other family members. Supportgroups for parents and siblings are avail-able to help families.

Parent Support Groups

The need to connect with otherparents is a very natural one when

a child is born with or withoutdisabilities. Parents face many

new challenges as they begin theprocess of raising their child.

Parent support groups are a signifi-cant source of parent-to-parent support.The primary purpose is to provide parentsa chance to share common experiences andconcerns, share their joys and successes,and learn together.

Groups vary in size and structure.Typically, one or two persons with aninterest in helping others start a group.Those who have “been there” and arehandling the situation in a positive, con-structive manner are likely candidates tostart the group. They have a willingness towork hard and help others. Professionalsfrom an agency often are instrumental inthe formation of a parent support group.

The first time I talked to anotherparent of a child with a disability,I wasn’t looking for a shoulder tocry on; a caring, listening ear; aconfidant with whom I could dis-cuss my greatest fears; or a friendwho would truly understand myexperience. All I wanted wassome information about the syn-drome that my baby might have.Instead, what I got was probablythe most positive, helpful experi-ence I’d had since my baby wasborn. It was a truly freeing experi-ence to know I wasn’t alone.Someone else had been through thesame things I’d been through; myfeelings and thoughts weren’t irra-tional but normal for my situa-tion, and someone else was facingthe same challenges I faced.

—Cindy Arstein-Kerslake, Parent

30

Parents need to be included in this processand be group facilitators.

When professionals partner withparent groups, they demonstrate the valueof parent-to-parent connections and modelcollaboration.8 (Additional informationabout parent support groups is provided inAppendix H.) Family Resource Centersprovide support to parent groups throughleadership training, newsletters andmailings, and assistance in finding speak-ers or a space to meet.

The connections in parent supportgroups can be very powerful for familiesin the process of working hard to pave apath for their family. Having the righttools and help along the way makes thejourney an enriching and enjoyableexperience.

Florene Stewart Poyadue, founder ofParents Helping Parents, San Jose, Cali-fornia, speaks with understanding aboutthe value of parent-to-parent support.

Strategies for coping with all of thevarious aspects of family life are asindividualized as the life events that weeach experience every day. Sometimesour coping responses are behavioral—wecount to 10, we go for a long walk, wescream and shout. Sometimes our copingresponses are cognitive in nature. Wethink about a situation in a way that willenhance our sense of well-being. Wemay compare our own situation tosomeone else’s and feel better that wehave our set of circumstances to dealwith rather than another’s; or perhaps welook ahead to someone further along inlife’s journey and feel a sense of hopeabout our own future. Considering thatthere may be positive benefits to an eventmay make an otherwise stressful situa-tion seem less so. Sometimes simplygathering information so that a sense of

mastery or control over a situationbecomes possible is helpful. Working tounderstand why an event has occurredand what it may mean is another way ofcoping cognitively with the adventures,both easy and difficult, that life sends ourway. The use of humor often facilitatesthe successful resolution of a difficultsituation and reduces stress. At ParentsHelping Parents (PHP), a parent-directedfamily resource center in San Jose,parents of children who have specialneeds are provided with many opportuni-ties to enhance and utilize their own styleof cognitive coping.

To families who are meeting the chal-lenges of a disability within the family,PHP provides the opportunity to grow, tobe realistic, and to still hold on to all ofthe positive thinking and hope that theycreate for themselves. Committed to theright of children to achieve their fullpotential and to receive coordinated,community-based health care, education,social, and legal services with respectand dignity, through family and profes-sional empowerment, PHP began provid-ing emotional and informational supportto families in 1976.9

Sibling Support

Planning a program for siblingsupport has to start with parenteducation. If parents receiveinformation on how to resolve

issues that arise in the family whenchildren are young, siblings may notrequire more direct support in the future.Parents preoccupied with appointments,meetings, or their own emotions may notrealize that others in the family are feelingneglected, anxious, or angry. Educationmay be as simple as advising parents toset aside time alone with a sibling who

8 Florene Stewart Poyadue, Parents Helping Parents Workshop at the National Down Syndrome CongressConvention, Anaheim, Calif., August 1993.

9 Ann P. Turnbull and others, Cognitive Coping, Families, and Disabilities. Baltimore: Paul H. BrookesPublishing Company, 1983, pp. 95–96.

31

may have feelings of abandonment be-cause the parent is busy with the therapyneeds of a family member. Encourageparents to keep open lines of communica-tion with their children and let them knowthat they can expect a range of emotionsto be expressed.

Parenting children of differentabilities is a constant balancing act.Parents may ask:• How much involvement is too much?• How can time for each child be allo-

cated fairly?

If the siblings are old enough, par-ents may want to invite them to assist incaring for the infant or toddler with adisability, just as the siblings of any otheryoung child participate in his or her care.Encourage parents to monitor their ownbehavior; parents may expect siblings totake on more responsibility than is reason-able for self-care, chores, or even thebehavior and well-being of the child withthe disability. In addition to spendingspecial time alone with each child, parentsmay encourage younger siblings toparticipate in the early interventionclassroom.

Finally, families need to be encour-aged to get involved in community activi-ties, such as church, playgroups, LittleLeague, or ballet classes. These groups

can provide special activities and opportu-nities for children to exercise skills incoping and integration on a smaller scalethan in a full-time classroom. Playgroupscan be especially valuable sources oflearning and support for everyone in-volved. Support does not always have tocome from professionals or from otherparents of children with disabilities.Parents can work out sibling (and other)issues in the company of friends. Childrenbegin to learn about and accept differencesas well as how to relate to and communi-cate with others. Lessons learned throughexperience, although not always pleasant,are powerful.

Sibling Concerns and Opportunities

Siblings of children with disabilitiesfeel many of the same emotions andconcerns that their parents feel.

However, because of the nature ofsibling relationships, they also have

concerns that differ from those of parents.The sibling relationship is lifelong, fre-quently the most lasting relationship in thefamily. Siblings are truly “in for the longhaul.” A sibling may never know life apartfrom a brother or sister with a disability;their world view is, therefore, fundamen-tally different from that of their parents. Tothem, the child’s disability may simply

When we have a child with extraordinary needs, our other childrenalso have extraordinary needs. They need extra support to live withthings they can’t understand and information and reassurance abouttheir own physical and emotional health. They need us to listen espe-cially carefully to their worries and concerns and provide clear guide-lines about what they are responsible for and what they are not.They deserve acknowledgment of their contradictory feelings and helpin sorting out their dilemmas. They need explicit appreciation fortheir sacrifices and contributions.

—From Barbara Gill, Changed by a Child

32

seem to be a fact of life and perhapspuzzling in the disturbance that it causes.The unique nature of sibling relationshipsforms the foundation of quality siblingsupport programs.

Children have more limited lifeexperiences than do adults to help putdisabilities into perspective. Many childrenfabricate their own explanations andinterpretations for various disabilities andsituations; these fabrications are often farfrom the truth.

A child’s sense of identity is closelytied to siblings. Siblings of children withdisabilities may experience overidenti-fication, wondering whether they share orwill have the disability. Siblings may alsofeel embarrassment at some point in time,often during adolescence, about theirfamily member’s disability. Peers maymake fun of people who are different,possibly people who have the same dis-ability as the family member, or they maymake fun of the sibling directly. Con-versely, siblings may wonder at the phe-nomenon of their brother (or sister) with adisability being so well known or fussedover; after all, he seems to be just like anyother typically annoying brother at home.

Siblings may experience feelings ofisolation, loneliness, loss, and resentment,especially during times of stress, such asduring hospitalization, diagnosis, or a fairhearing process. Siblings of children withdisabilities may feel increased responsi-bility for their sibling and for the emo-tional and physical well-being of theirparents. They often have questions aboutthe future:

• What will happen to the sibling withthe disability?

• Will one sibling need to take care of theother?

• Will the disability be passed on tofuture children?

On the other hand, many siblings ofchildren with disabilities exhibit positivecharacteristics that may be attributed totheir unique experiences.10 They aretypically more advanced in maturity andshow heightened insight and tolerance fordiversity. Their advocacy skills are ad-vanced, having had daily opportunities toexercise them or to observe the advocacyefforts of others. Siblings often choosecareers in the helping professions, havinghad the opportunity to observe an array of

10Carol Russell, Cassie Russell, and Mikelle Russell, “We’re Special, Too!” Disability Solutions, Vol. 2, No. 3(1997), 5.

33

professionals in the fields of medicine,education, and social services.

Sibling support programs helpsiblings identify and appreciate what isspecial in themselves and in their familymember with a disability. Siblings takepride in the accomplishments of theirsibling with a disability; they observe thesibling’s strengths and struggles and sharein the celebration of achievement. Addi-tionally, sibling support programs helpsiblings to identify and deal with theirconcerns and assist them in findingpositive ways to build on the opportuni-ties brought their way.

Effective Sibling Support

Support programs may takevarious forms, but an understand-ing of essential principles may

help provide effective support.

• Siblings will be siblings regardless ofdifferent abilities. Some situations justnaturally occur in any sibling relation-ship: children fight, brothers may begoofy, and sisters may be bossy. Thesesituations should be accepted as part oflife.

• Siblings need accurate information,repeated and updated, to help themfully understand the nature of their

sibling’s disability. Providing informa-tion that is out of date will serve only tohamper siblings in their understandingand adjustment.

• Information about a child’s disabilityshould be developmentally appropriatewhen given to siblings, reflecting thesibling’s maturity. To allow a siblingamplification of information that willbe appropriate, reflect back to him orher the question posed.

• Sibling support should be offered foran extended period, allowing siblingsto gather information as questions ariseand as situations change, such as duringtimes of transition or crisis.

• Information conveyed to siblingsshould agree with parents’ informa-tion, understanding, and values;therefore, two-way communicationmust be maintained with parents toprovide information to them and toobtain it from them.

• Follow-up efforts to assess the degreethe child understands the informationand to provide additional informationand resources should be a part of allsibling support.

• Sibling support should provide oppor-tunities for siblings to participate in

After several heart-wrenching play dates when my young son wit-nessed his sister being singled out for mistreatment by the five-year-oldleader of the group, I watched with pride as he announced to the olderchild, and everyone else, that that game was “mean,” it was makinghis sister “sad and mad,” and he was ready to go home! I let him knowhow proud I was of his support for his sister and we talked about whatwe all might do when a similar situation arose in the future. We alsotalked about why his friend might feel the need to treat his sister theway that he did. It was, all in all, an invaluable teachable moment.

—Angela McGuire, Parent

34

effective communication. They aregiven permission to express, under-stand, and accept their feelings.

• As family members, siblings should beincluded in activities relating tospecial education. When it is develop-mentally appropriate and in the bestinterest of the children, siblings may beinvited to participate in IFSP/IEPmeetings, special classes, appoint-ments, and therapies. These opportuni-ties can provide firsthand, accurateinformation about their sibling’s dis-ability. Also, siblings’ perspectives maycontribute to team discussions.

Sibling Support Workshops

One of the most comprehen-sive forms of sibling supportis the sibling workshop, aninformal gathering of a

group of siblings facilitatedby one or more leaders to

provide information and an opportunityfor sharing. The sibling workshop is awell-documented form of sibling support,thanks primarily to the efforts of DonaldMeyer, Patricia Vadasy, and RebeccaFewell who developed Sibshops.11

Sibshops give information in a recre-ational setting.

. . . The recreational setting of theSibshops helps assure that they will berewarding for the child to attend. If asibling regards a Sibshop as yet anothertime demand associated with the handi-capped child, he or she may find it hardto be receptive to the information

presented in the workshop. Further, ifthe Sibshops fail to offer anything that ispersonally satisfying for the sibling, heor she is unlikely to attend them in thefuture.12

Sibshops promote informal sharingand the development of friendships thatcan be ongoing sources of support forchildren. More specific information onsetting up a Sibshop is contained inSibshops: A Handbook for ImplementingWorkshops for Siblings of Children withSpecial Needs, available from the Univer-sity of Washington Press and from theSibling Support Project in Seattle, Wash-ington.

Other Avenues for Sibling Support

Sibling workshops independent ofSibshops have been developedand successfully implemented.

Various approaches to sharinginformation include field trips, parentinterviews, and hands-on activities utiliz-ing equipment, simulations, and interac-tion with professionals. Some programsrun sibling and parent workshops simulta-neously. Parents may interact with a panelof older siblings to enable them to betterunderstand both the rewarding and thedistressing aspects of being a sibling of achild with a disability. Skits are a goodway to act out problems and solutions.Some programs have provided directcounseling; others have allowed siblingsto spontaneously share feelings andproblems to be dealt with by the groupleaders and the other group members.13

11 Donald J. Meyer, Patricia F. Vadasy, and Rebecca R. Fewell, Sibshops: A Handbook for ImplementingWorkshops for Siblings of Children with Special Needs. Seattle: University of Washington Press, 1985.

12 Ibid.13 Thomas H. Powell and Peggy Ahranhold Ogle, Brothers and Sisters: A Special Part of Exceptional Families.

Baltimore: Paul H. Brookes Publishing Co., 1985, pp. 63–68.

35

Family ResourceCenters

I was surprised when my veryyoung son asked me if his sistercouldn’t talk because she has“germs in her.” He had puttogether what he knew about hissister’s struggles with speech andwhat he’d recently learned aboutgerms, sore throats, and earaches.We took this opportunity to discussvery simple specifics of his sister’sdisability (her muscles are soft,her tongue is big, she has to workharder to learn), and he wassatisfied with what he learned.This information was presentedin a way that was developmentallyappropriate for his age.

—Angela McGuire, Parent

Family Resource Centers (FRCs)are a statewide, community-basedsystem of parent-to-parent support

services. Although individual FRCs ineach community vary, they all providesupport and information to families

and promote positive relationships andjoint problem solving between families

and professionals. The FRCs support theemotional and informational needs offamilies and help them obtain servicesand understand the early interventionservice delivery system.

FRCs may help families identify andarticulate their strengths, resources, andneeds in developing their individualizedfamily service plans (IFSPs). Communityagencies, interagency councils, and otherorganizations work closely with FRCs inpromoting public awareness and imple-menting outreach efforts associated withearly intervention services in their com-munity. Professionals and agencies seek-ing to implement family-focused serviceslook to FRCs as a source of informationand support. The FRC staff can provide afamily perspective on single- and multi-agency teams and support the inclusion ofparents and families as important mem-bers of the early intervention servicestraining team.

36

FRCs are a hub of family involve-ment. Most FRCs were developed and aremanaged and staffed by parents of chil-dren with disabilities. FRCs link familieswith families and with a multitude ofcommunity agencies, services, and re-sources.

One of the unique and most valuableservices offered by FRCs is parent-to-parent support. The parent support groupfunctions much like any traditional self-help group. “These groups are self-governed, very personal, positive thinkinggroups that offer individualized human-ness, information, and caring from some-one who has been there,” explains FlorenePoyadue.15

Parents can effectively help otherparents because they have experienced thesame problem or situation. A parent of achild with a disability can feel an immedi-ate connection to another parent of a childwith a disability. This bond can transcendcultural and socioeconomic differencesand allow parents to communicate witheach other on an intimate, trusting levelabout issues of central concern to themeven though they have known each otherfor only a few minutes. Parents respecteach other for the challenges they facewhile understanding that neither of themis a saint and they are each just doing thebest that they can for their child. Thebenefits of parents helping parents arecircular. Parents who listen and share theirstory may be provided a new frame ofreference, new strategies for coping, ornew encouragement and inspiration everytime they talk to another parent.

Increasingly, local educationalagency (LEA) professionals appreciatethe role and value of FRCs, and FRCshave learned how to meet the needs ofLEA professionals while simultaneously

defining and developing their own role insupporting parents. Communities inwhich professionals have seen the posi-tive impact of FRCs have acknowledgedtheir value and have demonstrated theirsupport by making referrals, sharingresources, and engaging in joint projects.The communities have found that themore they do together, the more they likeand respect each other, and the better theyachieve their shared goal of supportingparents.

FRCs receive many calls from thecommunity. The following lists indicatetypical questions asked by professionalsand parents; the roles of FRCs are indi-cated in parentheses:

Calls from Professionals

• “We need a parent who can talk aboutthe impact that a child with a disabilitycan have on the family. This personwill be a member of a panel duringDisability Awareness Week. Would youfind one for us?” (Community aware-ness)

• “I’m working with a parent of a childwith a very rare disorder. He hasfrequent seizures and difficulty eating.The mother is feeling really isolatedand alone. It might help for her to talkto another parent. Do you know ofsomeone with a similar experience whocould talk to her?” (Parent-to-parentsupport)

• “There’s a parent here at the hospitalwho just had a baby with Down syn-drome. We have an interpreter here, butI just don’t think the mother under-stands the special care she’s going toneed to give the baby. Do you have aparent who could come to the hospitaland talk with her?” (Parent-to-parentsupport)

15 Florene S. Poyadue, Steps to Starting . . . A Family Resource Center or a Self-Help Group. Santa Clara, Calif.:Parents Helping Parents, The Special Children’s Family Resource Center, 1991, pp. 5–6.

37

Calls from Parents

• “Our support group needs a place tomeet. Do you have any ideas?” (Re-sources for support groups)

• “My daughter is 18 months old. Shejust learned to walk, but she’s still nottalking or making any understandablesounds. I’m worried about her. Is theresomeplace I can take her to find out ifthere’s something wrong?” (Referral toearly intervention services)

• “My son is nine months old and hasmild cerebral palsy. He doesn’t qualifyfor regional center services, but I stillthink he needs therapy. Do you know ofany programs that could help him?”(Information and referral)

Family Resource Centersand Community AgenciesFRCs may collaborate with communityagencies to host the following activities:• Transition Fair• Toy Fair• Co-sponsors of community events• Co-sponsors of family activities and

parent education classes through localparks and recreation districts

• Co-sponsors or team participants inDisability Awareness Week activities

• Support of multiagency efforts to builda community playground that is acces-sible by wheelchair

Family Resource Centersand ProfessionalsProfessionals providing educational,medical, and social services may supportthe work of FRCs in the following ways:• Refer parents to FRCs.• Make other professionals aware of

FRCs.• Volunteer to serve on an FRC advisory

board.• Ask representatives of the FRC to serve

on the advisory board of the child carecenter.

• Invite FRCs to participate in in-servicetraining.

• Participate in FRC-sponsored training.• Advertise parent involvement activities

in FRC newsletters.• Invite FRC staff to parent involvement

activities.• Ask FRCs to provide parent education

workshops for families in their infant orpreschool program.

• Provide meeting space for FRC activi-ties.

• Donate printing services for outreachmaterials produced by FRCs that servefamilies in the infant or preschoolprogram.

• Donate resources, tapes, books, andinformation to the FRC library.

38

Afterword

This handbook provides profession-als and parents ideas for develop-

ing meaningful family involvementwith infant and preschool special

education programs. Familyinvolvement consists of more

than attending events or activities.Meaningful family involvement occurswhen professionals and parents develop apartnership based on mutual respect andtrust to design and deliver services foryoung children. When this partnershipexists, family involvement occurs on aregular basis, and planned activities andevents are successful in drawing familiestogether.

The following thoughts expressparents’ attitude toward the professionalsin the parent-professional partnership:

• Your unconditional respect for ourfamilies and your view of us as “well”families help us feel competent and giveus confidence in our own resources.

• You are going to be an important part ofour children’s lives. We want to get toknow you as people and not just asprofessionals. Although we are parentsof children with disabilities, we are alsointerested and involved in other thingsin addition to our child’s disability.Together, let us discover the commonground we share.

• Your love and acceptance of our beauti-ful children help to encourage us andvalidate our own love and acceptance ofthem just the way they are.

• In the process of your assessments andevaluations, please acknowledge withus what our children can do. Help ussee our child’s potential and unfolding

stages of development instead of focus-ing on deficits and remediation.

• So that we can become effective manag-ers, coordinators and decision makersfor our children, it is important for us tosee you in the role of consultant as weare learning to coordinate services forour children, write IFSP outcomes,develop goals for an IEP, or go throughthe process of transition.

• We appreciate your help in identifyingand providing opportunities to talk withother parents who have gone through thesame things that we are going through.We also appreciate regular remindersthat these opportunities are available.

• We are newcomers to the world ofdisability; you are the teachers, we arethe students. You are newcomers to ourfamilies; we are the teachers, and youare the students. We must learn togetherto be an effective support for the chil-dren.

• Sometimes when trying desperately tomeet the needs of our child with adisability, we overlook the needs of ourother children. You, as professionals,can help us remain aware of the specialneeds of our other children. Together wecan identify appropriate support optionsfor them.

• With information about resources andprograms that can help our children, wecan strategize together on the best planfor services that will maximize ourchildren’s potential and at the same timefit in with the needs of our family.

Celebrate our successes with us! Wewill work as a team to solve problems andcome up with solutions.

51

Some of the references cited may nolonger be in print or otherwise

available. The publicationdata were supplied by theSpecial Education Division.

Questions about the materi-als should be addressed to

the division at (916) 445-4613.

Berman, Carol. “Family-directed Evaluationand Assessment under the Individuals withDisabilities Education Act (IDEA): Les-sons Learned from Experiences of Pro-grams and Parents,” Zero to Three, Vol. 14,No. 6 (June/July 1994).

Brazelton, T. Berry. Touchpoints. Reading,Mass.: Addison-Wesley Publishing Co.,1992

Brekken, Linda. “Personnel Qualificationsand Personnel De velopment,” in FamilySupport Guidelines for Effective Practice.Sacramento: California Department ofDevelopmental Services, InteragencyCoordinating Council, Family SupportServices Workgroup,1994.

Brekken, Linda; Andrea Knowlton; and ChrisDrouin. “Transition: Issues and Re-sources,” in Preschool Handbook. Auburn,Calif.: Placer Nevada SELPA, 1995.

Bruder, Mary Beth, and T. Diane Hatcher.Transdisciplinary Teaming in the Pre-school Classroom. N.p.: Division of Childand Family Studies, Department of Pediat-rics, University of Connecticut HealthCenter, n.d.

Carr, Ann; Anne Kuschner; and JohnGunnarson. “Team Building,” in Building

Success for All Children: Walking the Talk.Workshop Binder, Year One. Rohnert Park:California Institute on Human Services,Sonoma State University, 1995.

Gill, Barbara. Changed by a Child. NewYork: Doubleday, 1997.

Greenspan, Stanley I., and Samuel Meisels,with the Zero to Three Work Group onDevelopmental Assessment. “Toward aNew Vision for the Developmental Assess-ment of Infants and Young Children,” Zeroto Three, Vol. 14, No. 6 (June/July 1994).

Greenspan, Stanley I., and Serena Wieder.“An Integrated Developmental Approachto Interventions for Young Children withSevere Difficulties in Relating and Com-municating,” Zero to Three, Vol. 17, No. 5(April/May 1997).

Kuersten, Joan. “Parents as Partners,” OurChildren National PTA Magazine, Vol. 22,No. 3 (January/February 1997).

Kuersten, Joan. “PTA Promotes ParentInvolvement Standards,” Our ChildrenNational PTA Magazine, Vol. 22, No. 4(March/April 1997), 4.

Lally, Keith. “Early Head Start: The First TwoYears,” Zero to Three (October/November1997), 7.

Lieberman, Alicia F. “An Infant MentalHealth Perspective,” Zero to Three, Vol.18, No. 3 (December 1997/January 1998).

Mann, Tammy. “Promoting the Mental Healthof Infants and Toddlers in Early HeadStart: Responsibilities, Partnerships, andSupports,” Zero to Three, Vol. 18, No. 2(October/November 1997).

Selected References

52

Matrix Parent Network and Resource Center.“Matrix Supports Parent Participation andSo Does Congress,” The Networker (Fall1997), p. 5.

Meyer, Donald, and Patricia Vadasy. Livingwith a Brother or Sister with Special Needs:A Book for Sibs. Seattle: University ofWashington Press, 1996.

Meyer, Donald; Patricia Vadasy; and RebeccaFewell. Sibshops: A Handbook for Imple-menting Workshops for Siblings of Childrenwith Special Needs. Seattle: University ofWashington Press, 1985.

Mikitka, Catharine, and Michael Rosenberg.Partners in Education. Sacramento CountyInfant Development Program and theSupported Life Institute, Workshop Binder.Sacramento: Sacramento County Office ofEducation, 1996.

Milburn, Lucia. “A Parent’s Perspective:Assessment and Intervention,” InfantDevelopment Association Newsletter(Spring 1991), 1–2.

Morgan, Swan. Collaborating for Comprehen-sive Services for Young Children and TheirFamilies. Baltimore: Paul H. BrookesPublishing Co., 1993.

Noonan, M. J., and others. Preschool Prepara-tion and Transition Project: Parent Educa-tion Manual. Manoa, Hawaii: University ofHawaii, 1991.

Partnership for Family Involvement in Educa-tion. America Goes Back to School. Wash-ington, D.C.: U.S. Department of Educa-tion, 1996.

Powell, Thomas H., and Peggy Ahranhold-Ogle. Brothers and Sisters: A Special Partof Exceptional Families. Baltimore: PaulH. Brookes Publishing Co., 1985.

Poyadue, Florene Stewart. Steps to Starting. . . A Family Resource Center or a Self-Help Group. Santa Clara, Calif.: ParentsHelping Parents, The Special Children’sFamily Resource Center, 1991.

Poyadue, Florene Stewart. Staying Alive andThriving As a Parent Group/Agency.Anaheim: National Down SyndromeCongress Gage-Snider Parent GroupLeadership Seminar, 1993.

Rocco, Susan. “Toward a Shared Commit-ment and Shared Responsibility,” in NewVisions for the Developmental Assessmentof Infants and Young Children. Washing-ton, D.C.: Zero to Three, 1996, pp. 55–57.

Rosen, Roslyn, and others. Parent EducationResource Manual. Washington, D.C.:Gallaudet University Press, 1982.

Russell, Carol; Cassie Russell; and MikelleRussell. “We’re Special, Too!” DisabilitySolutions, Vol. 2, No. 3 (1997), 1, 3–6.

Turnbull, Ann P., and others. CognitiveCoping, Families, and Disabilities. Balti-more: Paul H. Brookes Publishing Co.,1983.

53

Publications Available from the Department of Education

This publication is one of over 600 that are available from the California Department of Education. Some of themore recent publications or those most widely used are the following:

Item no. Title (Date of publication) Price

1372 Arts Work: A Call for Arts Education for All California Students: The Report of the Superintendent’s Task Forceon the Visual and Performing Arts (1997) ............................................................................................................................ $11.25

1379 Assessing and Fostering the Development of a First and a Second Language in Early Childhood—TrainingManual (1998) ......................................................................................................................................................................... 19.00

1377 Assessing the Development of a First and a Second Language in Early Childhood: Resource Guide (1998) ............................ 10.751356 Best Practices for Designing and Delivering Effective Programs for Individuals with Autistic Spectrum Disorders (1997) .....10.001436 California Department of Education Early Start Program Guide (1998) ..................................................................................... 10.001394 California Public School Directory, 1998..................................................................................................................................... 17.501459 California Safe Schools Assessment: 1997-98 Results (1999) ..................................................................................................... 12.001438 California School Accounting Manual, 1998 Edition .................................................................................................................. 28.501460 California Special Education Programs: A Composite of Laws, Twenty-first Edition (1999) .............................................No charge1398 California Year-Round Education Directory, 1997-98 (1998) ..................................................................................................... 10.000488 Caught in the Middle: Educational Reform for Young Adolescents in California Public Schools (1987) .................................... 9.251373 Challenge Standards for Student Success: Health Education (1998) ........................................................................................... 10.001409 Challenge Standards for Student Success: Language Arts Student Work Addendum (1998) ..................................................... 12.751298 Challenge Standards for Student Success: Mathematics (1997) .................................................................................................. 15.751435 Challenge Standards for Student Success: Physical Education (1998) .......................................................................................... 8.501429 Challenge Standards for Student Success: Visual and Performing Arts (1998) ........................................................................... 12.501290 Challenge Toolkit: Family-School Compact (1997) ...................................................................................................................... 9.95*

1439 Check It Out! Assessing School Library Media Programs: A Guide for School District Education Policyand Implementation Teams (1998) ............................................................................................................................................ 9.25

1375 Children Teaching Children (CD-ROM) (1997) .......................................................................................................................... 12.001143 Children’s Choices: A Cookbook for Family Child Care Providers (1995) ................................................................................. 12.951187 A Child’s Place in the Environment—Unit 1 (for grade one): Respecting Living Things (1994) ............................................... 45.00†1359 A Child’s Place in the Environment—Unit 1 (for grade one): Respecting Living Things, Student Pages in Spanish (1997) ...... 9.75‡

1391 Commodity Administrative Manual (1998) ................................................................................................................................. 19.501281 Connect, Compute, and Compete: The Report of the California Education Technology Task Force (1996) ................................ 5.751285 Continuity for Young Children (1997) ........................................................................................................................................... 7.501437 Coordinated Compliance Review Training Guide, 1999-2000 (1998) ......................................................................................... 22.001431 Early Identification/Early Intervention of Young Children with Emotional and Behavioral Issues: Trainer

of Trainers Manual (1998) ....................................................................................................................................................... 30.001410 Ear-Resistible: Hearing Test Procedures for Infants, Toddlers, and Preschoolers, Birth Through Five Years of Age (1998) ....10.001352 Educational Specifications: Linking Design of School Facilities to Educational Program (1997) .............................................. 18.501389 English–Language Arts Content Standards for California Public Schools, Kindergarten Through Grade Twelve (1998) ........... 9.251244 Every Child a Reader: The Report of the California Reading Task Force (1995) ......................................................................... 5.251430 Every Little Bite Counts: Supporting Young Children with Special Needs at Mealtime (1998) ................................................. 14.751367 Family Connections: Helping Caregivers Develop Nutrition Partnerships with Parents (1997) ................................................... 9.001388 First Look: Vision Evaluation and Assessment for Infants, Toddlers, and Preschoolers, Birth Through Five Years

of Age (1998) .......................................................................................................................................................................... 10.000804 Foreign Language Framework for California Public Schools, Kindergarten Through Grade Twelve (1989) ............................... 7.251355 The Form of Reform: School Facility Design Implications for California Educational Reform (1997) ..................................... 18.501378 Fostering the Development of a First and a Second Language in Early Childhood: Resource Guide (1998) ............................. 10.751365 Fresh Fruit and Vegetable Photo Cards (1997) ............................................................................................................................ 30.001382 Getting Results, Part I: California Action Guide to Creating Safe and Drug-Free Schools and Communities (1998) ................ 15.251408 Guide and Criteria for Program Quality Review: Elementary Grades (1998) ............................................................................. 13.501268 Guidelines for Occupational Therapy and Physical Therapy in California Public Schools (1996) ............................................. 12.501380 Health Careers Education 2000: A Program Guide (1998) .......................................................................................................... 20.001064 Health Framework for California Public Schools, Kindergarten Through Grade Twelve (1994) ............................................... 10.001322 Helping Your Child with Homework (1995) .................................................................................................................................. 6.250737 Here They Come: Ready or Not—Report of the School Readiness Task Force (summary report) (1988) ................................... 5.001284 History–Social Science Framework for California Public Schools, 1997 Updated Edition (1997) ............................................. 12.50

Prices are subject to change. Please call 1-800-995-4099 for current prices and shipping charges.

* Other titles in the Challenge Toolkit series are Outline for Assessment and Accountability Plans (Item 1300), Safe and Healthy Schools (Item 1299), SchoolFacilities (Item 1294), Site-Based Decision Making (Item 1295), Service Learning (Item 1291), Student Activities (Item 1292), and Student Learning Plans(Item no. 1296). Call 1-800-995-4099 for prices and shipping charges.

†A Child’s Place is available in six units (for grades one through six). Call 1-800-995-4099 for information on the price and title of each unit.‡Student Pages in Spanish are available for all six units of A Child’s Place. Call 1-800-995-4099 for information on the price and title of each unit.

54

Item no. Title (Date of publication) Price

1245 Improving Mathematics Achievement for All California Students: The Report of the California MathematicsTask Force (1995) ................................................................................................................................................................... $5.25

1258 Industrial and Technology Education: Career Path Guide and Model Curriculum Standards (1996) ......................................... 17.001147 It’s Elementary! (Abridged Version) (1994) ...................................................................................................................Set of 10/6.001024 It’s Elementary! Elementary Grades Task Force Report (1992) .................................................................................................... 9.001055 Infant/Toddler Caregiving: A Guide to Cognitive Development and Learning (1995) ............................................................... 12.50*1057 Infant/Toddler Caregiving: A Guide to Culturally Sensitive Care (1995) ................................................................................... 12.501442 Joining Hands: Preparing Teachers to Make Meaningful Home-School Connections (1998) ..................................................... 13.251252 Just Kids: A Training Manual for Working with Children Prenatally Substance-Exposed (1996) ............................................. 22.251227 Keeping Kids Healthy: Preventing and Managing Communicable Disease in Child Care (1995) .............................................. 15.001266 Literature for the Visual and Performing Arts, Kindergarten Through Grade Twelve (1996) .................................................... 10.251457 Mathematics Content Standards for California Public Schools, Kindergarten Through Grade Twelve (1999) ............................ 8.501384 Observing Preschoolers: Assessing First and Second Language Development (video) (1998) ................................................... 12.001065 Physical Education Framework for California Public Schools, Kindergarten Through Grade Twelve (1994) ............................. 7.751314 Positive Intervention for Serious Behavior Problems: Best Practices in Implementing the Hughes Bill (Assembly

Bill 2586) and the Positive Behavioral Intervention Regulations (1998) ............................................................................... 14.001222 Practical Ideas for Teaching Writing as a Process at the High School and College Levels (1997) ............................................. 18.001221 Practical Ideas for Teaching Writing as a Process at the Elementary School and Middle School Levels

(1996 Revised Edition) ............................................................................................................................................................ 18.000309 Program Guidelines for Hearing Impaired Individuals (1986) ..................................................................................................... 10.000886 Program Guidelines for Individuals Who Are Deaf-Blind (1990) ............................................................................................... 10.001032 Program Guidelines for Individuals Who Are Severely Orthopedically Impaired ...................................................................... 10.001289 Program Guidelines for Students Who Are Visually Impaired, 1997 Revised Edition ............................................................... 10.001256 Project EXCEPTIONAL: A Guide for Training and Recruiting Child Care Providers to Serve Young Children

with Disabilities, Volume 1 (1996) ......................................................................................................................................... 20.001257 Project EXCEPTIONAL: A Guide for Training and Recruiting Child Care Providers to Serve Young Children

with Disabilities, Volume 2 (1996) ......................................................................................................................................... 30.751344 Reading/Language Arts and English as a Second Language: Adoption Report (1997) ............................................................... 11.001399 Ready to Learn—Quality Preschools for California in the 21st Century: The Report of the Superintendent’s Universal

Preschool Task Force (1998) ..................................................................................................................................................... 8.001171 Recommended Readings in Literature, Kindergarten Through Grade Eight, Revised Annotated Edition (1996) ...................... 10.001315 Reducing Exceptional Stress and Trauma: Curriculum and Intervention Guidelines (1997) ...................................................... 17.001316 Reducing Exceptional Stress and Trauma: Facilitator’s Guide (1997) ........................................................................................ 18.001318 Room at the Table: Meeting Children’s Special Needs at Mealtimes (video and guide) (1997) ................................................. 17.001191 Safe Schools: A Planning Guide for Action (1995 Edition) ......................................................................................................... 11.001150 School-Age Care in California: Addressing the Needs of Children, Families, and Society (1996) ............................................. 13.000870 Science Framework for California Public Schools, Kindergarten Through Grade Twelve (1990) ............................................... 9.501445 Science Safety Handbook for California Public Schools (1999) .................................................................................................. 17.501387 School District Organization Handbook (1998) ........................................................................................................................... 24.501411 School Nutrition Programs Guidance Manual (1998) .................................................................................................................. 30.001402 School Safety—Addendum to Safe Schools: A Planning Guide for Action (1998) ...................................................................... 8.251040 Second to None: A Vision of the New California High School (1992) ......................................................................................... 9.501452 Service-Learning: Linking Classrooms and Communities: The Report of the Superintendent’s Service Learning

Task Force (1999) ..................................................................................................................................................................... 7.001407 Steering by Results—A High-Stakes Rewards and Interventions Program for California Schools and Students:

The Report of the Rewards and Interventions Advisory Committee (1998) ............................................................................. 8.001277 Strategies for Success: A Resource Manual for SHAPE (Shaping Health as Partners in Education) (1996) .............................. 15.001383 Talking with Preschoolers: Strategies for Promoting First and Second Language Development (video) (1998) ........................ 12.001255 Taking Charge: A Disaster Preparedness Guide for Child Care and Development Centers (1996) ............................................ 10.251276 Teaching Reading: A Balanced, Comprehensive Approach to Teaching Reading in Prekindergarten Through Grade

Three (1996) .............................................................................................................................................................................. 5.751260 Today’s Special: A Fresh Approach to Meals for Preschoolers (video and guide) (1996) .......................................................... 17.00†1342 Transportation Demand Management: Data Analysis, Instructor’s Edition (1997) ..................................................................... 14.001335 Transportation Demand Management: Investigations and Problem Analysis—A Science Resource Unit,

Grades Eight Through Twelve (1997) ..................................................................................................................................... 11.001337 Transportation Demand Management: Transportation Choices, Instructor’s Edition (1997) ...................................................... 11.001261 Visual and Performing Arts Framework for California Public Schools, Kindergarten Through Grade Twelve (1996) .............. 15.00

* Other Infant/Toddler Caregiving guides also available at the same price: Creating Partnerships with Parents (item no. 0878); Language Development andCommunication, (0880); Routines (0877); Setting Up Environments (0879); and Social-Emotional Growth and Socialization (0876).

†Also available in a Spanish edition of both video and guide (item no. 1262) at same price.

Prices are subject to change. Please call 1-800-995-4099 for current prices and shipping charges.

55

VISA®

MasterCardMasterCard

®

Order FormDate

School/District

Name/Attention

Address

City State ZIP code

Telephone ( )

To: California Department of EducationCDE Press, Sales OfficeP.O. Box 271Sacramento, CA 95812-0271(916) 445-1260 • FAX (916) 323-0823

■■ Check made payable to California Department of Education

■■ Purchase Order ■■ VISA ■■ MasterCard

/Card Number (Please write clearly.) Expiration Date: Month Year

Name on Card

Authorized Signature

$

Item Number of Price pernumber Title of publication copies or sets copy or set Total

Total number ofcopies

$

$

$

$

Subtotal

California residentsadd sales tax.

Shipping and handlingcharges (See chart.)

TOTAL AMOUNT

Shipping and Handling Charges

Numberof copies Add

1 $ 4.952–4 6.955–8 8.959–12 10.95

Numberof copies Add

13–16 $11.9517–20 12.9521–24 14.9525–28 15.95

Numberof copies Add

29–32 $17.9533–36 19.9537–40 21.9540+ call 1-800-995-4099

Note: Mail orders must be accompanied by a check, a purchase order, or aVISA or MasterCard credit card number, including expiration date and yoursignature. Purchase orders without checks are accepted from educationalinstitutions, businesses, and governmental agencies. Purchase orders and creditcard orders may be placed by FAX (916) 323-0823. Telephone orders will beaccepted toll-free (1-800-995-4099) for credit card purchases. Please do not sendcash. Stated prices are subject to change. Please order carefully; include correctitem number and quantity for each publication ordered. All sales are final.

Prices are subject to change. Please call 1-800-995-4099 for current prices and shipping charges.

■■ Please send me a free copy of the currentEducational Resources Catalog.

98-015 02-1931-376 4-99 5M