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California Department of Education, Special Education Division’s special project, California Services for Technical Assistance and Training (CalSTAT) is funded through a contract with the Napa County Office of Education. CalSTAT is partially funded from federal funds, State Grants #H027A080116A. Additional federal funds are provided from a federal competitively awarded State Personnel Development Grant to California (#H323A070011) provided from the U.S. Department of Education Part D of the Individuals with Disabilities Education act (IDEA). Opinions expressed herein are those of the authors and do not necessarily represent the position of the U. S. Department of Education.
Volume 31, No. 3
Inclusive preschool classrooms are still the exception and not the rule.
The Individuals with Disabilities Education Act (IDEA) originally conceived of special education as operating within the context of general education. Yet special education still evolved into a largely separate system, with its own classrooms, teacher preparation programs, professional development opportunities, assessments, and accountability processes.
California envisions general education and special education working together seamlessly as one system that is designed to address the needs of all students—as soon as those needs are apparent. Within that system, students with disabilities receive effective services, learn in classrooms that are guided by rigorous standards, attend class alongside their general education peers when appropriate, and are equipped to make their own way as adults. Within this coherent system, services for children with disabilities are provided from the time they are born, through preschool, and until they graduate with a high school diploma or reach the age of 22. These services are devised and implemented by well-prepared general education and special education teachers who work collaboratively.1
In pursuit of this vision, the state has recently created for the first time one system of accountability for all students. Also in support of one system, the California Commission on Teacher Credentialing is in the process of defining a “common trunk” of knowledge for all educators, general and special. And the governor and State Board of Education have made significant investments in this work by scaling up the statewide use of a model of a multitiered system of supports (MTSS).
In a unified and coherent system of education, all children and youth with disabilities are considered general education students first. And all educators, regardless of which students they are assigned to serve, have a collective responsibility to see that all students receive the education and the support they need to maximize their development and reach their full potential, thus allowing them to participate meaningfully in the nation’s economy and democracy.2 California is on an ambitious path toward realizing this vision by changing its institutions and structures as well as the hearts and minds of school leaders, teachers, students, and their families. The state is creating a single educational circle with everyone inside, and where everyone belongs.
This issue of The EDge explores the possibilities and challenges for providing children with disabilities inclusive early childhood and preschool opportunities from the moment they enter they public education system. The articles examine the challenges and benefits to increasing inclusive childcare and preschool options, suggest reasons why inclusion should start at the very beginning, highlight places in the state where early childhood inclusion is the standard, explore the ultimately pragmatic value of early inclusion and intervention, and more. Read on.
By Kristin Wright, Director, Special Education Division, and Sarah Neville-Morgan, Director, Early Education Support Division
Renewed efforts to fully include young children with disabilities in early care and education programs can be traced to a powerful statement made at our highest levels of government. This statement—a joint policy paper by the Department of Health and Human Services (HHS) and the Department of Education (ED), first published in 2015 and re-affirmed in 2017—sets forth visionary expectations for children with disabilities to have access to high-quality inclusive early childhood programs (you can find the paper at https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/preschool-lre-dcl-1-10-17.pdf).
Recognizing the importance of all of California’s children entering the public education system in the most inclusive and supportive environment possible is consistent with current early childhood research and is the foundation on which the Individuals with Disabilities Education Act (IDEA) is built. Educating children with disabilities in early childhood environments with same-aged peers without disabilities is described in the IDEA as a right. More importantly, inclusion has a positive impact on every child’s future opportunities and outcomes.
We feel great pride that California has been a leader in developing high-quality programs for infants, toddlers, and preschoolers through such innovative, inclusive, and collaborative efforts as the California Preschool Instructional Network and the Program for Infant/Toddler Care. In addition, the currently expanding programs in Early Start, Head Start, and state preschools are making quality settings increasingly more available for California’s youngest citizens. However, there needs to be more inclusive, early educational opportunities for young children with disabilities.
We know that quality early learning and care programs are crucial to improving the educational outcomes for young children with disabilities, regardless of the nature or severity of the disability. We also know that these settings represent a vital step toward meaningful inclusion throughout a lifespan and often set a child’s early trajectory for inclusive opportunities in K–12 education. It is the intent of the California Department of Education, Special Education Division (SED) and Early Education Support Division (EESD) to support early childhood providers in caring for and instructing young children with disabilities in settings and classrooms with their same-age peers through collaboration and teamwork between high-quality early childhood programs and special education services and supports.
We know that efforts to include all children and their families in communities and throughout their lives necessarily begin in the very earliest years. We support the expectation and the federal IDEA, which grants children with disabilities the right to be fully included to the greatest extent possible with their peers without disabilities, and establishes inclusive opportunities as a right and not a privilege. We look forward to working toward insuring that more children, including those with disabilities, have access to high-quality, inclusive early education and childcare settings.
This issue of The EDge explores the possibilities, challenges, and rewards of implementing a more inclusive educational system from the very beginning of each child’s educational career. The issue offers scientific, legal, academic, social, and emotional reasons why inclusion must begin at the start of life; it also includes stories about what happens when inclusion is the norm.
We hope that the information here will help to support child care administrators, IDEA Part C and Part B 619 coordinators, early childhood advocates, parents, legal guardians, and all other stakeholders in their passion and effort to create inclusive early childhood communities.
—Kristin and Sarah
Children with disabilities show higher learning and developmental achievement in school and care environments that are fully inclusive. Research has confirmed this as fact. For example, when students with disabilities are taught in fully inclusive general education classrooms they make, “gains in academic, social, community living and employment skills not experienced by students educated in separate classrooms”; and students without disabilities who learn and work in inclusive settings experience “growth in moral and ethical principals, self-esteem, patience, and comfort level with people with disabilities.”1
Our laws have responded to this research. The Individuals with Disabilities Education Act (IDEA) “promises that children and their parents are welcomed into the hallways and classrooms of every public school and that their needs will be met by expert teachers and other highly trained personnel. To the greatest extent possible, these services are to be provided to students alongside their nondisabled peers; with additional help in place, students with disabilities are expected to meet the same academic standards.”2
IDEA is not alone in establishing these protections. The Americans with Disabilities Act (ADA) prohibits any discrimination based on disability. Title II of the ADA requires public services, programs, and activities to provide the most integrated setting appropriate for anyone whose disabilities limit access. Title III of the ADA prohibits discrimination in places of public accommodation, including private child care and private preschool programs, regardless of whether or not they receive federal funds. Similarly, Section 504 of the Rehabilitation Act serves as a civil rights statute to prohibit any discrimination based on disability in any program or activity that receives federal funding.
The Head Start Act and the Child Care and Development Block Grant Act (CCDBG) add additional weight to this trend. Both set forth specific provisions and requirements that promote high-quality inclusive opportunities for children with disabilities. By statute, Head Start and Early Head Start programs must make at least 10 percent of their enrollment opportunities available to children with disabilities. The reauthorization of the CCDBG, which is the principal source of federal funding to improve the quality of child care in the country, “includes several opportunities for new and renewed action on improving inclusion of children with disabilities in child care.”3
In general, federal laws mandate that all child care and preschool programs—as well as all public schools—allow children with disabilities access to programs that are available to all other children. All federal and state-funded programs—early childhood centers, preschools, and Head Start—must provide a free, appropriate public education (FAPE) in the least restrictive environment (LRE) to all children who fall under these laws and protections, regardless of whether or not a program is directly affiliated with a local education agency, such as a school district or charter school.
The U.S. Department of Education (ED) and the Department of Health and Human Services (HHS) have encouraged a redoubling of efforts to create and expand inclusive settings and classrooms in support of the growth and development of all children. Their 2015 policy statement4 on inclusion in early childhood programs offers the following:
The ED states that separate settings can be used “only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”5 This qualification would apply, for example, to a child with a medical condition that is compromised by exposure to a large group of people.
The National Association for the Education of Young Children (NAEYC) and the Division for Early Childhood (DEC) of the Council for Exceptional Children have also written a Joint Position Statement6 that represents a commitment to work together to create one unified system where all children belong. The DEC and NAEYC have identified three defining features of these inclusive settings:
Access includes providing a range of activities and environments for every child by removing physical barriers through universal design and offering multiple ways to learn and grow through universal design for learning.
Participation refers to a range of instructional approaches that promote engagement in play and learning activities for every child so that every child can belong.
Supports involve the creation of a systemic infrastructure to ensure quality in all inclusive efforts; for example, through ongoing professional development, in-class coaching, specialized services that are integrated with general early care and education, and opportunities for families and professionals to communicate.
The most frequently reported barriers to early childhood inclusion that have remained largely unchanged over the past several decades are the attitudes and beliefs among the professionals involved. However, targeted professional development, learning coaches, reflective practice, and administrative support all can serve to increase the confidence and ability of teachers and caregivers to help their students learn.
Other reported challenges include conflicting interpretations of IDEA, the paucity of comprehensive services, and the limited time available for building partnerships. But challenges can be met. Numerous initiatives and organizations exist to support states, schools, and families in adapting to and navigating the complex landscape of early childhood care and education.
The recent reauthorization of the CCDBG, for example, did more than simply reinforce existing provisions; it included new ones that align with and support the ability of states to embed the DEC/NAEYC best practices for inclusion into policy and programs. These requirements present an unprecedented opportunity to ensure that children with disabilities have equitable opportunities to access high-quality child care.
Specifically, the CCDGF now requires states to do the following:
Develop strategies for increasing the supply and quality of child care
California is making its own significant contributions to this trend, which is becoming a movement. Most notably, several of the state’s initiatives are dedicated to increasing the number of inclusive early childhood settings: Beginning Together, California MAP to Inclusion and Belonging, and Teaching Pyramid. The CDE sponsors other related professional development projects, such as California Preschool Instructional Network (CPIN) and the Program for Infant Toddler Care (PITC). As well, Cal State Dominguez Hills is in its second year of a five-year federal grant to train early childhood special education teacher candidates in inclusive and family-centered practices, with the goal of enhancing training in these practices for all of their early childhood teacher candidates.
When the goal is to improve access to quality, inclusive preschool programs, everyone involved has an important role to play. The steps listed in the graphic below offer opportunities for stakeholders to participate in creating one coherent and integrated system of education, a system that benefits when everyone works together to serve all students.
When schools. . . build relationships and conduct short-term and long-term planning with partner agencies and private preschools to eliminate, to every extent possible, segregated settings for young children. . .
When teachers . . . support child care providers by sharing expertise and ways to differentiate instruction for all students . . .
When parents . . . advocate for their child’s participation in regular preschool programs . . .
. . . then students with disabilities will enjoy being with friends who are of the same age and will be included as members of the larger community of learners.
SpecialQuest Birth–Five features hundreds of free, quality resources: videos, trainings, and materials that explain, model, and support full inclusion in early childhood care and education settings. Find them at http://www.specialquest.org/about.htm
The New Jersey Council on Developmental Disabilities. (2004). Still Separate and Unequal, p. 8. http://www.edlawcenter.org/assets/files/pdfs/issues-special-education/Still_Separate_and_Unequal.pdf
California’s Statewide Task Force on Special Education. (2015). One System: Reforming Education to Serve All Students, p. 7. http://www.smcoe.org/assets/files/about-smcoe/superintendents-office/statewide-special-education-task-force/Task%20Force%20Report%205.18.15.pdf
Bires, C., Berman, K. Kenefick, E., & Rausch, A. (2017). Building Inclusive State Child Care Systems. Childcare Aware of America, Division of Early Childhood of the Council for Exceptional Children, the Ounce. https://usa.childcareaware.org/wp-content/uploads/2017/09/CCDF-and-Inclusion-Final-Sept.-2017.pdf
For the full policy statement, go to https://www2.ed.gov/policy/speced/guid/earlylearning/joint-statement-full-text.pdf
Office of Special Education and Rehabilitative Services. (January 9, 2017). Letter. https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/preschool-lre-dcl-1-10-17.pdf
n 1976, the United States passed a law that mandated education for children with disabilities. That law addressed children of school age. As more was learned about the importance of early intervention—and its cost savings to schools and society—the law was reauthorized as the Individuals with Disabilities Education Act (IDEA) to mandate services for children birth to age three, as well. A few years after this addition, more services were added to Part B for preschool children who had turned three but were not yet old enough for kindergarten. This evolution of IDEA is why its Part B addresses children ages 3 through 21, and Part C addresses infants and toddlers. In California, the system of providing part C services is called Early Start.
If children never changed, there would be no need for the two different sections in the law. But infants, regardless of whether or not they have a disability, are very different beings at birth than they are at age three. In those few intervening years, a child’s brain grows and changes more rapidly than it ever will again; and research also tells us that babies learn best in the context of primary relationships—all of which gives solid reason for Part C of the law being substantially different from Part B.
In Early Start, the services and supports for a young child are considered within the context of the child’s family. Relationships are central to all Early Start services, and supporting the family and child in “natural environments” is a primary goal. In Part B, the focus becomes more school based, and the child is seen—and served—within a context of teachers, school, and peers. In Part C, the definitions of qualifying conditions are “global” and include “developmental delay.” In Part B, the definitions of what constitutes a disability are very specific.
Because of these differences, a great deal can change for a child with a disability and the child’s family as the child approaches her third birthday. Change is always a challenge, even when welcomed. So it is particularly critical for the adults involved in transitions to pay careful attention to smoothing the process.
IDEA requires programs on both sides of the transition from Part C to Part B to collaborate. Yet challenges and obstacles can still emerge.
Six months before a child with a disability who is receiving Early Start services turns three, a transition team is formed by the Early Start providers, the family, and the service providers and teachers from the “receiving” school district or preschool. The “receiving” professionals conduct evaluations to determine whether or not the child qualifies for services under Part B. During this time it becomes very important for family members to educate themselves about the differences between the two parts of the law and to learn about their rights and responsibilities and the Part B obligations of the receiving district (or preschool) prior to the transition meeting.
There are common stumbling blocks. Agencies that provide services are frequently different for Early Start (Part C) and preschool special education (Part B), and some do not have established protocols that support ongoing communication and collaboration during the transition process. Assessments that determine eligibility are also different between Part C and Part B; coordinating and sharing information from these assessments can be a challenge.
In addition, qualifying criteria for special education services are different between the two parts of the law, making a determination of eligibility sometimes difficult; some children will not continue to be eligible for special education at age thee. Finally, the transition process can be complicated for families. For example, transition from Early Start is timed according to the child’s birthday, not the school year. So a child turning three in April or May might be eligible for part B services, but those services may be based on a preschool year that ends in May or June and does not start up again until September—leaving a child without services during the intervening months.
Transitioning to Part B services also can be a time of opportunity. The purpose of education is to prepare individuals for employ-ment, independent living, and community engagement. As a child grows and develops from infancy, it’s never too early for the adults in that child’s life to begin planning with those long-term goals in mind. Leaving the more personal and family-centered services of Part C marks a child’s step into the larger world. This change creates an ideal occasion for families to communicate with Part B personnel about the dreams and goals the family has for the child, the child’s strengths and weaknesses, and the kinds of expectations they have of the Part B services.
Since families can look forward to many more transitions—from preschool to kindergarten at age five, then to elementary school, junior high, high school, and so on—this first transition offers a important opportunity to learn, reflect, and practice.
All of the adults involved in this transition also have an opportunity to define patterns of communication and commit to making them regular and ongoing, between Part C and Part B agencies for example. This kind of articulation helps to create working relationships and levels of understanding that contribute to successful transitions. Once established, these relationships don’t just enhance the lives of the parents and professionals involved; they improve school outcomes for children, as well.
If parents and family members haven’t already done so, they will want to contact their local parent resource center (find the one nearest you at http://www.frcnca.org). These places are designed to provide peer-to-peer supports, information, and training on issues related to disability, especially on the rights and responsibilities of parents and family members and strategies for being authentically engaged in the education of their child—and in the many transitions along the way.
We’ve all heard stories about a “teachable moment,” the point in time when a child is ready to learn: eager, energized, and motivated—to know more about the life cycle of butterflies, for example, or to tackle a first complete piano scale. These moments most often emerge from the child’s stage of development, past learning experiences, and the immediate situation: the child holds the necessary prior knowledge or skill, an adult is poised to provide the appropriate support and direction, the setting is conducive to learning, and an almost magical conflation happens.
Early childhood educators have studied the practices that create and capitalize on these moments: “embedded instruction.”
The Division for Early Childhood of the Council for Exceptional Children has confirmed embedded instruction as a scientifically based practice1 and has formally defined it as a process of “inserting planned, individualized teaching into children’s ongoing activities, routines, and transitions in a way that relates to the context of what the child is doing.” When applied to classroom learning, this approach offers invaluable lessons for instruction at all levels.
Patricia Snyder is professor, David Lawrence Jr. Endowed Chair, and director of the Anita Zucker Center for Excellence in Early Childhood Studies at the University of Florida. She has spent her career researching the application of evidence-based instructional practices, including embedded instruction, in early childhood settings.
Embedded instruction, she says, has its origins in the mid 1960s in Kansas City, Kansas. Citizens from the community and staff from the University of Kansas were concerned about local children who were growing up in poverty. Out of these concerns, they created the Juniper Gardens program in an attempt to mitigate the effects of “poor rearing practices” on these children and the paucity of quality learning experiences, factors that were known to contribute to later academic failure, behavior problems, early school dropout, delinquency, and teen pregnancies.
Two of the founders of Juniper Gardens, Betty Hart and Todd Risley, recognized the value of teaching language to young children at risk through naturally occurring adult-child interactions and by following “children’s motivation and interests.” Drs. Hart and Risley started embedding language instruction into interactions that the children found engaging. Also called “incidental teaching” and “embedded teaching,” embedded instruction amounts to “following the attentional lead of children and capitalizing on their interests,” says Snyder.
For a typically developing group of three-year-olds who like to sing, for example, instruction could be embedded in the movements and lyrics to a song that everyone sings with the teacher. The goal is for the children to learn words associated with directions. The song is about reaching “up” and reaching “down,” reaching “right” and reaching “left,” reaching “over,” “under,” and “through.” A child who moves right when he’s singing “left” may be invited to sit on a teacher’s lap during the song, and she guides his arms in the movements that match the words.
Staff at Juniper Gardens along with others in early intervention/early childhood education in the mid sixties and early 1970s—long before “we had the context of IDEA” says Snyder—were implementing, studying, and refining naturalistic and embedded instructional practices that would end up having profound influence on both general and special education.
That influence took decades to happen. The Education for All Handicapped Children Act (later to be reauthorized as IDEA) mandated state programs and services for children with disabilities ages 3 through 18. The 1986 amendments to that law extended the mandate to include children with disabilities from birth (and until they turned 22).2
In the 1980s, young children without disabilities generally did not go to school before they turned five. “As a result,” says Snyder, early preschool programs for children with disabilities “essentially amounted to segregated groupings” in traditional special education classrooms. And since embedded instruction developed from an initiative that wasn’t focused on children with disabilities, teacher preparation programs for early childhood special educators did not always incorporate it into their teacher competencies.
As preschool became more the norm for all children, early childhood professional development eventually “caught on to the importance of context in learning experiences as well as the need to set up inclusive classrooms—classrooms that include all children,” says Snyder. Intentional teaching and embedded instruction for all children in inclusive settings became a recognized feature of quality early childhood settings. And more.
What developed organically out of Juniper Gardens ultimately was “. . . reflected in many aspects of contemporary special education policies and practices including, for example: the Individual Education Plan and Individual Family Service Plans, functional assessment of challenging behavior, environmental assessment, peer-mediated instruction, behavior management, early intervention, inclusion, Response to Intervention, data-based decision making, transition, among others.”3
What was particularly revolutionary about embedded instruction for children with disabilities was the organic nature of the approach. “Historically, programs educating young children with disabilities delivered instruction in contrived environments using discrete trial teaching methods.”4 Naturalistic teaching approaches, including embedded instruction, broke ground for a clear path to full and authentic inclusion in natural environments.
As it takes advantage of “where the child is,” embedded instruction involves examining what a child does every day in her activities, routines, and transitional times (i.e., what happens when she moves from one activity to another—snack time to outdoor time to small-group time, for example). Then, with these things in mind, teachers, family members, and other caregivers consider and plan . . .
Embedded instruction defines targeted individualized goals for each child. These goals then guide how the child’s environment is shaped, what activities are offered, and how adults respond to the child. The curricula used for typically developing children are used to guide the content of instruction for those with disabilities or who are at risk for developmental delay.
Embedded instruction for a four-year-old with autism, for example, might focus on helping her move (or “transition”) with her preschool class from playing outdoors to washing hands before snack time. If her individual goal is “following directions with a group” and her disability limits her skill in observing and imitating other children or following verbal directions, her teacher might create a “picture schedule”6 to help her know what to do during transitions. She is guided to look at the picture schedule before the transition, perhaps with such verbal prompts as, “First we line up on the ramp, and next we wash hands in the sink, and then we find our place at the snack table.” The pictures and the verbal prompts all help the child to participate fully and equitably in the ongoing activities of the preschool and alongside her peers.
Since embedded instruction came out of efforts to support children who were at risk for learning problems and not those with disabilities, the practice bridges both general and special education—and helps to create a culture of inclusion.
Embedded instruction builds on intentional teaching, which is part of developmentally appropriate practices for all children. From IDEA up to very recent court rulings,7 the law insists that the least restrictive environment involves more than access; it must include meaningful participation in activities, curriculum, and instruction. A child must benefit from his or her education. Embedded instruction is an evidence-based approach to making that benefit possible, while ensuring equity.
Many of the principles of embedded instruction are the same as those of any good instruction, and they easily extend beyond preschool. Embedded instruction dovetails seamlessly with universal design for learning (UDL), for example. UDL focuses on making environments accessible to everyone and on offering multiple and varied formats for instruction and learning. This focus mirrors embedded instruction as it emphasizes high-quality physical and social environments, with instruction that is a creative and intentional response to a child’s engagement in those environments. As it offers “just-in-time supports,”8 UDL echoes the importance of capitalizing on the “teachable moment” of embedded instruction. In general, and as applied to an inclusive classroom, embedded instruction also encompasses the UDL process of devising adaptations, accommodations, and special instruction that make the general education curriculum available to children with disabilities—and that serve to engage all children by modeling creativity and flexibility.
“What we’ve learned” about embedded instruction, says Snyder, “helps us think about what we are doing naturally, and about who needs more targeted instructional support.” This emphasis on targeted supports based on goals and progress also aligns embedded instruction with response to intervention (RtI), another research-informed approach to ensuring an appropriate response to a child’s learning needs. Embedded instruction and RtI both frame a learning cycle that involves evaluating a student’s progress, providing targeted response and instruction in support of that progress, and frequently monitoring progress and adjusting or removing supports, as needed. Both use data to inform decisions as a child’s needs change over time.
Finally, a multitiered system of supports (MTSS) is proven to be a whole-system iteration of embedded instruction. MTSS is designed to create a climate of collaboration and positive relationships within a seamless continuum of services. Embedded instruction carries with it this same vision of a systemic response to the specific needs of each child within a coordinated, inclusive environment.
Building on research conducted by Snyder and her colleagues, and through a grant from the National Center for Special Education Research, U.S. Department of Education, several county offices of education and large school districts in California have been working with the Anita Zucker Center for Excellence in Early Childhood Studies at the University of Florida to translate the research about embedded instruction into classroom practice, especially for children with disabilities and signs of developmental delay.
Sheila Self, early childhood special education consultant at the California Department of Education, Special Education Division, sees enormous potential in this initiative: Embedded Instruction for Early Learning. The goal of the project is to create a statewide system of professional development for early childhood educators so that embedded instruction becomes a common practice in California’s preschools.
Word has caught on. Three sites were “early adopters,” says Self, and the project has grown to include several more. The training is grounded in implementation science, and all of the early childhood professionals involved, says Self, are immersed in a “rich environment with multiple levels of support.” Ongoing coaching, reflective practice, and communities of practice are regular and essential features of how early childhood teachers and caregivers are learning to incorporate embedded instruction into their work. This first cadre of trained California professionals will co-train with staff from the University of Florida in 2018. Then “our coaches will be ready to train others” in California, says Self. “Our grant money is not forever, but once we have the infrastructure, it doesn’t take new money to move it forward.”
Snyder is part of the team providing this professional development for embedded instruction in the California project, along with her colleagues Drs. Mary McLean, Darbianne Shannon, Tara McLaughlin, and Kimberly Megrath. Their efforts are “built on ongoing support for teachers and children in the classroom.”
“It’s not easy,” she says. It takes creativity, imagination, and a belief in the capacity of each child to learn—and the importance of each child learning. Teachers also need to “believe in their ability to influence children,” Snyder says, but she is convinced that any teacher can learn to use embedded instruction if provided with high-quality professional development. Embedded Instruction for Early Learners appears to be delivering that quality. “The more fluent the teacher is in the practice, the more willing the teacher is to implement the practice,” says Snyder. In her experience, training that includes modeling and coaching ensures this fluency—making it a good bet that California will turn its vision for inclusive preschools into reality.
The California Department of Education (CDE) has created nationally recognized early childhood program standards, the Desired Results Developmental Profile, to ensure that the state’s system of early childhood care and education programs is coordinated and working toward the same successful outcomes for all young children. CDE launched the Desired Results Access Project to assist the Special Education Division in using the profile to measure the progress of California’s children with disabilities or signs of developmental delay—those with Individualized Family Service Plans (IFSPs) and Individualized Education Programs (IEPs). To learn more, go to https://www.draccess.org.
California educators have a new set of tools to address the most common reading disability in the country. The California Dyslexia Guidelines, published this past summer, are designed to help general education teachers, special education teachers, and parents identify, assess, and support students with dyslexia.
The California Code of Regulations list dyslexia as one type of “specific learning disability” that qualifies students for special education services. According to Dyslexic Advantage,1 a nonprofit organization dedicated to fostering “positive identity, community, and strength” for individuals with dyslexia, nearly one million public school children in California have dyslexia.
A neurobiological disorder, dyslexia makes it difficult for students to match letters and sounds, leading to problems mastering the core skills of literacy—reading, writing, and spelling—and contributing to academic challenges.
Reading and writing are complex processes, involving the ability to recognize the sounds of words (e.g., distinguishing “dent” from “tent”); the way words change in context (e.g., using “run” in one instance and “ran” in another); and the way words work in relation to one another (e.g., knowing to say “She is careful” but “She works carefully”). Added to these issues of phonology, morphology, and syntax, are those of mode, tone, voice, and more. And each one of these aspects of language influences every other.
Individuals with dyslexia have a difficult time with these interrelating processes, the most common having to do with “the understanding that spoken language can be divided into smaller units.” Dyslexia makes it difficult for them to recognize, segment, blend, and manipulate these sounds.
In the word “coat,” for example, most of us recognize three distinct sounds and can easily play with the word to create rhymes, use it to make compound words, and even turn it backwards. For individuals with dyslexia, none of these activities comes easily or naturally. This compromised fluency with language often extends to an individual’s ability to remember the meanings of words and word segments, to understand how they work in context, and to spell them.
In school, where so much of learning depends on the ability to read and write, students with dyslexia face social and emotional challenges in addition to academic struggles. According to the guidelines, students with dyslexia often “worry that they will make a mistake or be ridiculed by others.” This anticipation of failure can “lead to avoidance and depression. . . . Repeated failure in school may lead to low academic self-concept and low self-esteem, which in turn may lead to behavior problems that are secondary [to the disability] but equally important to the learning issues” (Guidelines, p. 24). Further complicating the picture, low self-esteem often makes these students less responsive to interventions.
Although language problems generally emerge when children begin to learn to read and write, signs of dyslexia can be observed in preschool-age children. According to the guidelines, a young child with dyslexia may start speaking later than his peers, or his speech may be especially difficult to understand; and he may experience difficulty learning age-appropriate nursery rhymes or remembering the letters of his own name.
The guidelines state that early diagnosis of dyslexia can ensure that students receive “focused, evidence-based intervention leading to self-awareness, self-improvement, and the provision of necessary accommodations for success in school and life” (Guidelines, p. 4).
The guidelines repeatedly emphasize this importance of early intervention. Waiting until a child demonstrates a reading problem, “wastes precious time that could be spent building a foundation of oral language on which later literacy skills could be developed” (Guidelines, p. 15).
Parental support for children with dyslexia is critical at all stages of a child’s education, but it is especially important in the early preschool years, according to the guidelines. They suggest that parents and caregivers read to children from books with rhyming patterns, sing nursery rhymes, and engage children in conversations. All of these strategies are helpful to the language development of any child, but they are particularly important for those with early signs of dyslexia.
The guidelines state that “skilled teaching” is the most effective treatment for dyslexia and that teachers need “current, accurate information and [need to] be taught to identify the condition” in their students. The guidelines recommend both pre-service and in-service training for teachers, speech-language pathologists, school psychologists and counselors, assistive technology specialists, and site administrators. They also call for school teams to partner with teacher preparation and credentialing programs to prepare all educators—not just reading specialists or special education teachers—“to directly address the needs of students with dyslexia in the classroom” (Guidelines, p. 39).
The guidelines advocate a comprehensive approach to addressing dyslexia: early diagnosis and intervention, parent involvement, support services that incorporate multisensory techniques, and well-trained teachers who are conversant in effective reading instruction and intervention and who are aware of and sensitive to the potential social and emotional complications of the disability.
The complete California Dyslexia Guidelines are at https://www.cde.ca.gov/sp/se/ac/documents/cadyslexiaguidelines.pdf
“It was a challenging time for educators and practitioners,” says Ann England when describing the world of treatments and interventions for autism spectrum disorders (ASD) prior to 2009. As the assistant director of the Diagnostic Center, Northern California, England is in a position to know. Before that year, an Internet search for “autism treatments” could yield more than several million hits—and no protocols for filtering them. Some treatments promised full recovery, even as the FDA described autism as having no cure;1 others claimed remarkable levels of amelioration, but were expensive and offered no scientific evidence to back up their claims. And there were millions and millions of them.
Contributing to the challenge was the known importance of early intervention for young children with autism, especially when interventions are delivered within inclusive settings. There was already ample “data indicating that inclusion can lead to excellent outcomes for preschoolers with ASD.”2 Yet what those interventions were remained a puzzle until 2009.
In 2009 and 2010, the National Professional Development Center on Autism Spectrum Disorder (NPDC-ASD) and the National Autism Center (NAC) conducted critical reviews of the ASD research literature. These reviews identified evidence-based practices for ASD for children ages 3 to 21.
Then in 2012 the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill expanded on the work of NPDC-ASD with its ASD Toddler Initiative: Promoting the Use of Evidence-Based Practices for Toddlers With Autism Spectrum Disorders. This initiative developed online materials and training modules to support the use of evidence-based practices for young children, their families, and service providers.3
Parents and educators started breathing a collective sigh of relief. But the number of students diagnosed with autism was rapidly increasing, and the next question was how to train professionals in the use of the proven practices.
California was ahead of the game. In 2008 the state had launched CAPTAIN—California Autism Professional Training And Information Network. From the beginning, the initiative applied the principles of implementation science, with the goal of spreading evidence-based practices statewide and ensuring that they were used appropriately and as designed, i.e., with fidelity. CAPTAIN is garnering state and national attention, as much for its use of implementation science as for the practices it is teaching others to use.
“People are starting to take notice of what we are doing because they see it working,” says Patty Schetter, project manager at the UC Davis MIND Institute. She and England are co-coordinators of CAPTAIN. “The important thing for people to see is that implementation requires more than just training. It does not matter what innovation or practice we are talking about—inclusion, co-teaching, evidence-based practices for reading and literacy, or schoolwide positive behavior interventions and supports. The key to implementing the what—in our case, evidence-based practices for autism—is using the frameworks and practices from implementation science. It is the how. It takes the guesswork out of getting things done, because if you use it, it works!”
The Institute of Education Sciences (IES), the research arm of the U.S. Department of Education, has recently funded a $1.4 million, three-year grant to study CAPTAIN, “looking at factors that influence the effectiveness of a collaborative statewide network for sharing information about evidence-based practices.” Aubyn Stahmer, researcher from the UC Davis MIND Institute, is the primary investigator for this study. “The CAPTAIN statewide implementation effort provides a natural vehicle for examining facilitators and barriers to training and support for educators in the use of evidence-based practices,” says Stahmer. “Outcomes will inform scale-up efforts for EBP [evidence-based practices] implementation more broadly.”4
Attention to evidence-based practice has become ubiquitous, and not just because the practices work. Using evidence-based practices is also the law, mandated by the Individuals with Disabilities Education Act, the Every Student Succeeds Act, and the Office of Special Education Programs’ monitoring approach: Results-Driven Accountability; they are also strongly recommended in numerous national education guidelines. What the IES study identifies as particularly effective from the CAPTAIN efforts could have broad-reaching implications for current educational initiatives in the state, particularly the California SUMS Initiative: Scale-Up MTSS Statewide, which is also built on evidence-based practices.
The good news is that there is already much to learn from CAPTAIN’s successes and its use of implementation science.
Implementation science has identified three things as central to successfully installing any initiative: the leadership, the organization of the effort, and the competency of the people involved. These are called the “drivers.” CAPTAIN attended to these drivers from the beginning, choosing its leadership and creating its organization slowly and carefully at multiple levels. It started with a planning group in 2008, then a working group in 2009. From there, a two-year grant made it possible for state and local training and technical assistance (TTA) providers to receive coaching and feedback on their use of ASD tools and resources—enhancing their competency. The CAPTAIN Leadership Team then spent 17 months developing CAPTAIN as it currently exists: a statewide training and technical assistance network for treatments and interventions for ASD.
To further its organizational effectiveness, the project developed implementation teams that operate at state, regional, district, and site levels. The state-level multi-agency leadership team communicates monthly by phone and meets twice annually for strategic planning, also meeting annually with and surveying the 17 CAPTAIN regional teams to update them on new advancements in the field and to learn from them what is working and what needs to be improved. These regional teams are also multi-agency, made up of representatives from SELPAs, regional centers, and family resource and family empowerment centers. They meet quarterly to solve local problems and to develop collaborative plans for disseminating information about ASD and evidence-based practices. The regional teams ensure that the strategies and interventions are delivered to children and families with fidelity, using hands-on coaching and technical assistance best practices.
According to Schetter, “We focused a great deal of time and energy getting the buy-in of the right people.” The group of CAPTAIN “cadre members” are these people, and they serve as the linchpin for the organization’s work. Nominated by their regional agencies, cadre members directly serve their communities as “trainers of trainers,” disseminating information about evidence-based practices, providing hands-on coaching and TTA, and ensuring fidelity. Their job is to build expertise among the professionals who serve children and families and to increase the capacity of their agency to use evidence-based practices.
Schetter said, “We went to the organiza-tions and helped them understand how critical it is that they support the personnel requirements to be a part of CAPTAIN. ‘You want people who know the content and are available to do the training, coaching, and information dissemination. You then need to free these people up to do the work.’ In response, some administrators changed job descriptions or realigned responsibilities to make this happen. Sometimes they even changed their minds about the people they originally chose because they realized that getting the right fit of personnel was critical to success.”
When asked how they were able to get this level of commitment and response, England said, “Some LEA administrators were frustrated. They told us they were paying thousands and thousands of dollars year after year for professional development—‘stand and deliver’ or ‘sit and get’ trainings, for example—and getting no real results in the classrooms. We were there at the right time.”
Schetter added, “And some were hit hard with the growth in the number of kids they had with autism—and the amount of litigation they had to face when not using evidence-based practices. Avoiding litigation and seeing better outcomes for kids are great motivators!”
Both England and Schetter agree that the most important focus has been on how the CAPTAIN model supports fidelity of practice. This effort “requires more than just attending a training. Coaching and a supportive context that includes administrative support” are essential.
They both also see CAPTAIN’s success as due to an “amazing” leadership team, the support of the state SELPA organization, the 500-plus members of the CAPTAIN cadre who are “passionate about what they do for individuals with ASD, and the administrators who support them in carrying out this important work,” say England and Schetter.
There are numerous additional layers and nuances to CAPTAIN: an annual summit, professional learning communities, community conferences, community-based resource and referral brochures and handbooks, cross-agency training, and more. The messaging of CAPTAIN is coordinated and controlled, the standards for training at all levels are high, the connection and coordination within and across groups is frequent and ongoing. The network’s flexibility allows regions to address local challenges at their own pace. The CAPTAIN Web site, hosted by Diagnostic Center, Northern California, serves as a statewide clearinghouse to provide evidence-based and research-based information.
As with any large-scale initiative, questions and challenges remain. For example, why is there a great deal of ongoing commitment in some organizations and not much in others? Are there reliable ways to secure buy-in? What works best at what level? How does an initiative survive key personnel changes to become a permanent part of the system? Co-investigator for the IES study, Jessica Suhrheinrich from San Diego State University, plans to find answers to these questions and more. “Our goal is to identify factors that support state-level implementation,” says Suhrheinrich. “By the end of the grant we are hoping to know more about factors that improve the dissemination of evidence-based practices in the state. CAPTAIN is focused on services for autism, but we’re hoping that this model may be helpful for other statewide collaboration efforts that are focused on the needs of other groups or on other disability services.”
To visit the CAPTAIN Web site, go to http://www.captain.ca.gov/about.html
The human brain develops more rapidly in the first three years of life than at any other time.1 This fact makes early screening for disability or developmental delay critically important. Once identified, a disability or delay can be addressed—and its effects ameliorated—through targeted services and supports for the child and the child’s family. According to California’s Early Start program, which provides IDEA Part C services to eligible children, “The earlier intervention is started, the more likely it is that the educational achievement and quality of life for children with disabilities will be higher.”2
For nearly two decades, California has been responding to research that confirms the importance of early screening and intervention. In 1998, the state passed the California Children and Families Act, which in turn launched California Children and Families Commission, First 5 California.3 This initiative has developed quality early childhood standards for early education, child care, social services, health care, research, and community awareness. “The vision of First 5 California is for all of the state’s children to receive the best possible start in life and thrive,” and that they “enter school healthy and ready to learn.”
The state continues in its efforts to provide the best possible start in life for its youngest citizens. In 2016, State Senate Bill 2104 went into effect, requiring the California Department of Education’s State Special Schools and Services Division, along with the state’s two schools for the deaf, to work with stakeholders to select developmental language milestones for children who are deaf or hard of hearing and to use existing standardized norms in the selection process.
These milestones will be used to develop a resource that parents can use to monitor and track the expressive and receptive language acquisition of their children who are deaf or hard of hearing, and their developmental stages toward English literacy. The bill also requires the California Department of Education to select existing tools or assessments that all educators can use to assess the language and literacy development of these same children. The bill authorizes the use of these tools and assessments to modify a child’s Individualized Family Service Plan (IFSP) or Individualized Education Program (IEP) plan.
In 2015, California passed Assembly Bill 1369, which required the state superintendent of public instruction to develop and publish guidelines for dyslexia by the start of the current school year. Those guidelines have been developed, and they place significant emphasis on the importance of early screening and intervention for all children so that any signs of dyslexia or other reading challenge can be quickly addressed.
According to those guidelines, “early diagnosis is especially critical for narrowing the achievement gap, which is present [in children with dyslexia] as early as first grade; this is accomplished by screening, followed by identification and remediation with evidence-based approaches. Early diagnosis is also critical for ensuring that students with dyslexia receive focused, evidence-based intervention leading to self-awareness, self-empowerment, and the provision of necessary accommodations for success in school and life.”5
While early intervention services can ensure the least possible interruption in the important development and growth processes of a child’s earliest years, the importance of early intervention applies throughout a lifespan. In general, a disability that emerges at any age is always more easily and effectively addressed at its very first signs.
IDEA requires local education agencies (LEAs: school districts, county offices of education, and some charter schools) to identify, locate, and evaluate all children (from birth through age 21) with disabilities who reside in the LEA’s designated geographical areas. LEAs, in collaboration with their Special Education Local Plan Area (SELPA), must maintain “a system of notices, outreach efforts, staff training, and referral processes designed to ascertain when there are reasonable grounds to suspect disability and the potential need for special education services.”6
Whether or not an LEA is providing the early intervening or special education services for a child, the LEA is still responsible for ensuring that each child with a disability in its area is identified through screening, receives a free and appropriate public education in the least restrictive environment, and is given appropriate and individualized educational supports and services.
The children sitting in a circle have finished singing along to “Twinkle, Twinkle, Little Star” in English and Spanish, and now it’s time for a snack at Napa Junction Preschool. The teacher leads a simple activity to create a structure for the transition; she shows each child in turn a tablet with three colored rectangles and asks each to touch a specific color. The teacher says, “white” perhaps, or “green.” Once the child points to the color—most, but not all, get it right on the first try—the child is off to wash hands and take a seat at the table for crackers and carrots.
As they cycle from the circle to the sink to a table, it’s not immediately obvious that six of the three-to-five-year-olds in this class of 16 are students with disabilities. That’s just the way it has been at all California State Preschools in Napa County1 ever since separate, special day classes were eliminated five years ago. Full inclusion for all children, with and without disabilities, is the norm.
The county preschool program promotes and practices a belief that “inclusive classrooms provide all children with the opportunity to explore and develop their unique abilities and gifts,” says Andrea Knowlton, director of early childhood services. “We’re here to provide quality services to all students so they become contributing members of society to the fullest extent of their capabilities.”
Providing those inclusive opportunities at the beginning of a child’s educational life establishes the principle—and the expectation for children and families—that inclusion will continue to be the norm as the child moves on to elementary school, high school, and beyond with their typically developing peers. As Knowlton observes, “The parents say, ‘I have—and my child has—a right to that.’ They have never known anything else.”
Napa County has been operating preschool programs since 1969. It has seven California State Preschool classrooms offering half-day and full-day classes for approximately 300 children. Approximately 25 percent of the students have Individualized Education Programs (IEPs).
Back at Napa Junction, the children have finished their snack and are heading out to the playground where they are developing their gross motor, social-emotional, and sensory skills—taking turns riding bicycles, climbing ladders and sliding down slides, playing in water and at sand tables. And helping one another pick cherry tomatoes in their little garden.
Site supervisor Ashley Reed says that the teachers focus on the whole child. “We can introduce 1s, 2s, 3s, or A-B-Cs,” she says, but that’s not her primary focus. Rather, “we work to strengthen the social-emotional skills of all the students so they are confident, able to push boundaries, and ask questions. We model empathy and acceptance.” The children, she says, “help each other learn, everything from how to use scissors to what language should sound like.” And they make friends that they will see in kindergarten and beyond.
Maria Ramirez’s full-day classroom is in the city of Napa. In addition to the early childhood curriculum and schedule of daily routines, her 18 students—half of whom have IEPs—will use bilingual books available through the digital app “Whose Shoes?” from Footsteps2Brilliance2 for a month of lessons. From “Whose Shoes?” children will learn new words, colors, and numbers; and they will be introduced to a variety of professions as they explore the stories behind the shoes the professionals wear, from ballerinas to athletes, from models to construction workers. The lessons continue at home, where parents can access the app on a tablet or download it on a smart phone.
Ramirez sees progress in all of her students. A girl with Down syndrome wasn’t standing when she started the class. “Now she uses a walker and walks to the playground with the other children.” A boy who didn’t speak at all now uses a few words. The students without IEPs “learn that people with disabilities can do what they do; they see one another as friends and are learning compassion and not to be afraid of differences,” she says.
More than 80 percent of the children in Napa’s preschools are dual-language learners, and many arrive in class speaking little or no English. In addition to the presence of a Spanish-speaking staff person in every classroom who communicates with the children in both Spanish and English, teachers use visual icons early in the school year. When it is time to wash their hands, the children at Napa Junction are instructed in English and Spanish and shown a picture of handwashing. “By October, you hear them starting to use more English words,” says Knowlton.
Napa preschools have an avid supporter in Whitcomb Hayslip, the former assistant superintendent for early childhood education in the Los Angeles Unified School District, current early childhood education consultant, and long-time proponent of inclusion. “They’ve built a very strong program there,” he says. “If you believe that children are more alike than different and that all children have unique and individual needs, and you want the highest quality education for all, then you believe in inclusion.”
Staff in Napa preschools clearly believe in inclusion, and are also clear on what is needed to make their program work. Knowlton cites the environment, the staff, the curriculum, and the families.
“You first need to set up the environment, make sure you have all the materials you need in all the learning areas, inside and outside,” she says. A motor therapist will visit each classroom at the beginning of the school year to observe how the children use the space and to make sure that all of the children have access to activity areas and equipment, both in the classroom and outdoors.
“Then you need a high-quality staff with appropriate credentials,” Knowlton says. “You need the right number of staff, including Spanish [or other second-language] speakers.” All Napa County Preschool teachers have bachelor’s degrees, although that is not a requirement, and every classroom has at least one Spanish speaker. Specialists—speech and language therapists, motor therapists, special education and child development teachers—are assigned to classrooms to support children’s needs. Together they work as a team with the early childhood classroom teachers and paraprofessionals to provide an integrated curriculum.
Child development teacher Michel Eggert says she checks the curriculum to see “what adaptations I can make” to meet student needs “and still challenge them.” All staff have knowledge of a student’s IEP goals, and “if a child has a complicated IEP, we have a team meeting with the parent every six to eight weeks” in order to keep one another up to date and to make adaptations to daily routines and activities, Knowlton says. In reflecting on the Napa model, Hayslip notes that this “blended administration”—the state preschool program, preschool special education, and child development working together—contributes to the success of full inclusion in Napa.
Then the focus turns to “what are you teaching?” because “inclusion doesn’t work if you don’t start with a high-quality early childhood program,” Knowlton says. The basic system, California Preschool Learning Foundations,3 describes competencies—knowledge and skills—that most children can be expected to exhibit before entering kindergarten. “We are looking at all areas of development,” Knowlton says. That includes social-emotional learning, language and literacy, self-regulation, fine and gross motor skills, English-language development, and pre-academics. Napa also uses material from the Center on the Social and Emotional Foundations for Early Learning curriculum from Vanderbilt University (CSEFEL).4
Families are considered partners in the Napa early childhood programs. “Families are the primary teachers of young children,” says Hayslip. “How do we learn what they know and integrate it into our work? We have to form a team with them.” That is what Napa is doing.
Parents participate daily in their child’s education—they connect with preschool staff members when they drop off their children and when they pick them up. For families whose children ride a bus, there are electronic or written notes about what is happening both at home and at school. Families are also encouraged to involve their children in home activities that support the learning that is happening in school, like counting out silverware and sorting socks from the laundry. If they have a Wi-Fi connection at home, parents can borrow from the school a tablet and access the same bilingual apps their children are using in class. Or they can download the apps on a smart phone. Some parents volunteer in the classroom, reading stories or helping with art projects.
A parent advisory council of special and general education families meets monthly. “These same parents might be unsure about being involved at the elementary school level, but we encourage their participation; and this experience shows them how important it is to be part of their child’s education,” Knowlton says. All communications with families, paper and electronic, go out in English and Spanish.
When the program first eliminated special day classes for young children, “some families were hesitant about having their children in inclusive settings,” Knowlton says. But with support from the staff and the progress they witness in their children, “now nearly all are fine; they see the benefits.”
Ambar de Haro says she could see the difference soon after her nonverbal 4-year-old son with autism entered an inclusive class. “He excels way more in this class,” she says. “He watches what others do, and he speaks now. He can say words and tell you want he wants.” The teachers, she says, “give me a summary of how he’s doing, and they tell me what I can do at home.”
There are many years between preschool and the postsecondary world that these children will enter one day. When children with special needs are taught in inclusive settings, Haslip writes, “that contributes not only to the well being of families, but also to the inclusion of individuals with disabilities in our society. Parents report that successful inclusion during the preschool years is a cornerstone of their children’s formation of friendships and participation in the community.” The communication, collaboration, and socialization skills they are learning now will help them make the transition from school to college, living-wage employment, and independent living.
And yet, Haslip says, “We’ve had trouble bringing this to scale. There are still separate silos in early education, but I’m optimistic. K–12 systems are doing better about supporting inclusive classrooms.” They may be feeling the pressure from programs like the Napa preschool program. “It’s very clear,” Haslip says, “that if a child starts out in an inclusive environment in preschool, that child is likely to continue in inclusive settings.”
By Laureen Nolan Sills, Co-founding Mother of the Malibu Special Education Foundation and former Governor Appointee to the California Advisory Commission on Special Education
My name is Laureen Nolan Sills. I am a recovering helicopter parent and an over-achieving mother of three: one with autism and all three with ADHD. Shockingly, all have made it into their early 20s. Phew!
I equate my parenting experience with holding on to a tiger’s tail while trying to create a normal family—at least the one I dreamed in my head. And then I figured out how to love and nurture what was actually in front of me. Navigating reality is all about keeping a healthy perspective and occasionally putting on a pair of rose-colored glasses.
My older son graduated from an excellent Jesuit university in San Francisco and is now a performing artist in electronic dance music. My middle child is one of those free spirits about whom we take great comfort in saying, “she’s finding herself”—as a perpetual student at a college in Washington State.
My younger son, who lives with autism, is currently enrolled at Cal State Northridge as a junior, majoring in television production. He has a 3.4 grade-point average, lives in a house with other students, and is a member of a fraternity. Pledges, girls, and toga parties . . . I can only pray he has these typical experiences!
He is supported by The Gap Program-FACT,1 which enables students with disabilities to attend college with something similar to the Individualized Education Program (IEP) support they received in high school. Living the dream.
This son with autism was diagnosed several weeks after 9/11. Like the rest of the nation, I was already heart-broken, and adding the words “my son has autism” to my world threw me into paralyzing fear. Back in 2001, there wasn’t the awareness there is today about autism. I felt hopeless and lost.
When I finally got my sea legs back, I looked around my town and reached out to the families I knew who had a child with a disability. I decided that “I” needed to hear “their” words of wisdom. I also wondered if perhaps other people in the community would benefit from camaraderie on our common journey.
So I co-founded The Malibu Special Education Foundation, which serves the individuals with disabilities and their families in our community. The foundation raises funds to support special education teachers, staff, and administration; provides workshops for families; and advocates for our people. For the past 16 years, the best thing we do is hold a monthly support group for parents called “Wine and Whine.” Yep. If you have to be part of our group, might as well have a little fun with it.
It was the support, encouragement, and general efforts of the people in this group that helped to secure for my son the degree of inclusion that brought him to where he is today—belonging to different groups of people who see him as a friend, a peer, a fellow student. During his grade school and high school years, we had to ask for it, advocate for it, argue for it, and just be general pests about the importance of everyone belonging. But we were also blessed with an incredibly supportive IEP team that helped to keep my son an involved and visible member of his school and our community.
We’re a ways away from inclusion being the status quo and not just a “nice thing to do” or an afterthought. But we parents are important voices in creating a new paradigm where no one thinks twice or makes a fuss about inclusion. And where exclusion becomes the aberration.
In my moments of mediocre parenting and poor parenting, and in those other brief moments of good parenting and careful listening, I have decided that I may have collected a few pearls of wisdom to pass along to anyone reading this—to help us all create a better world for all of our kids. So, here are all the things that I know now, and that I wish I had known when my son was beginning preschool:
Here’s how you join: Open up an account and pick a “handle.” (I am @QueenBeach1.) Go to the search option and enter any topic: #autism, #Special Ed, #dyslexia, for example, will yield hundreds of people who “Tweet” and embed super valuable articles. Click “follow.”
Once you have chosen a few experts to follow, click on their account and see who they follow. Find the ones you like and follow them.
Every day you will wake up to the latest information on your chosen topic, “tweeted” by those experts you’re following. (Other suggestions: @WrightNowCA, @AutismSpeaks, @Annie_Fox, @ADDitudemag, @TheCoffeeKlatch, @ParentingSpot.)
We are all on this journey together, and nothing bonds a parent more than sharing our experience in raising our children. Dig in, do the work. And try on a pair of rose-colored glasses now and again.
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