Autism—A Family’s Journey and the Lights Along the Way

Note: April is National Autism Awareness Month.

Carolyn Hayer with son Chris and their family

Carolyn Hayer with son Chris and their family


Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, a federally funded Parent Training and Information Center.


Autism.

There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.

I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.

As I reflect on the past 30 years I recall so many memories.I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.

I remember…calling anyone and everyone I thought might help my family; the feelings of isolation at the playground, Sunday school, birthday parties, and all the other places where we just never seemed to fit in; the stress before every outing, wondering if there would be a meltdown or some other embarrassing event; wondering if my marriage would survive the stress; and the feelings of inadequacy for not parenting my children the way I thought I should have.

I remember the fear, guilt, and sheer terror of not knowing where my child was that day when he wandered off. But I also remember the intense relief and gratitude I felt when he was found.

I remember the vast uncertainty I felt when Chris was diagnosed, wondering what his life would be like as he grew to adulthood. And now that we have reached that point, I want to share some of the bright lights we encountered along the way, especially for those of you who may be new to the journey.

When he was four, I remember watching Chris climb aboard the school bus to begin the 45-minute ride to his “special” school. My gut told me that he needed to be with his community friends, and I spent years trying to persuade my school district to serve him in our local school. I learned about Chris’ right to be included with his neighborhood peers when I attended a workshop hosted by the New Jersey Statewide Parent Advocacy Network (SPAN), our state’s federally funded Parent Training and Information Center. SPAN became one of the bright lights on our path. The information our family received from SPAN allowed us to develop an IEP (individualized education program) that brought Chris back to our home district for high school. I remember watching anxiously as he disappeared into the building on his first day of high school, also his first day of school in a general education setting. Despite my concerns, I remember how kind and supportive Chris’ peers were to him; serving as beacons lighting our journey. I remember Chris learning math, reading, and how to play an instrument—things I was told he wouldn’t be able to do—and working with teachers who never gave up on him. And I will never forget, four years later, watching him climb into a limo with friends to attend the senior prom. My heart was so full of happiness and pride I thought it would burst.

This journey has taught me a great deal; autism has been my teacher for some of life’s most important lessons:

Gratitude.

Autism helps you to be grateful for the small things, the things you might have overlooked had they not been such a struggle to achieve: hugs, first words, friends, independence, general happiness and physical health. I’ve learned to take nothing for granted.

Community.

I continue to be in awe of, and inspired by, all the people we’ve met on this journey, most of whom have gone out of their way to help us any way they could: doctors, teachers, therapists, neighbors, friends, strangers, other families on the same path, and my colleagues at SPAN. Today, Chris has a circle of support that makes it possible for him to live a full, rich life. My husband and I appreciate the love and support of family; siblings have been caretakers and cheerleaders, and extended family members step up and help, no questions asked. Autism has taught me that I can’t do it all alone, no matter how hard I try. We need the support of others and must learn to accept it graciously.

Courage.

Fear is an everyday struggle on this journey. I fear what will happen today and in the near future, and dread what might happen to my child when I’m not able to care for him. I feel trepidation in trying something new, and doubt with every life decision. But sometimes I must take a leap of faith. In this, I have always been rewarded, either with success or increased knowledge, both very valuable. I have learned to trust in myself and follow my gut.

Forgiveness.

Of yourself and others. Don’t hold onto past mistakes and don’t carry the burden of anger and resentment toward others. Learn to let go, learn from your experiences, and move on.

Humor.

Laugh at yourself and your circumstances. Laughing releases endorphins and helps you feel good. We can learn a lot by seeing the world through a different lens and by not taking things—or ourselves—too seriously.

In closing, what I want to share with you more than anything is how immensely proud I am of Chris and all he has accomplished. He is a 30-year-old man living with autism, working and volunteering in the community, and often struggling to find his voice and get by in a world that can be overwhelming for him. Yet he manages to do it with dignity and grace, with unwavering support from the circle of love and light that surrounds him—his parents, siblings, and extended family; his peers, support staff, and therapists; our neighbors and friends. I shall always be thankful for Chris and the guiding lights that autism brought into our lives.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

“Voices from the Field”
Interview with Nancy Thompson and Janine Figiel

Nancy Thompson and Janine Figiel from Jolly Toddlers

Nancy Thompson and Janine Figiel from Jolly Toddlers

Nancy Thompson
Nancy is the owner and director of Jolly Toddlers, a thriving high-quality early education center. She opened this child care center in 1984 to meet the needs of local families looking for high-quality care. Nancy graduated from Fitzgerald-Mercy School of Nursing with a degree in nursing, becoming a registered nurse (RN). Later she attained an undergraduate degree in early childhood and elementary education, as well as a master’s degree in counseling from Gwynedd Mercy College. Nancy is the proud mother of four children, and grandmother to six beautiful grandchildren.
Janine Figiel
Janine is the Jolly Toddlers assistant director and the center’s facilitator of the Pyramid Model/PBIS. Janine graduated from Seton Hall University with a bachelor’s degree in psychology. After college, Janine worked as a human resource manager in her family’s business while raising her two children. Human interaction and positive reinforcement has always been one of her interests so when Nancy Thompson asked her to help facilitate the Pyramid Model/PBIS pilot program at Jolly Toddlers, she was thrilled. Janine has been at Jolly Toddlers since 2010 and has since received a Child Development Associate (CDA) certificate as well as a director’s diploma in early childhood education.

The Pyramid Model

The Pyramid Model, as referred to throughout this post, is a Positive Behavior Intervention and Support (PBIS) framework for young children. It is a tiered intervention model made up of evidenced-based practices. At the base (tier 1), are the universal supports for all children, provided through nurturing and responsive relationships and high-quality environments. The second tier (tier 2) is made up of prevention practices that target social and emotional strategies to prevent problems. The final tier (tier 3) consists of practices related to individualized intensive interventions for children with pervasive challenging behavior that need more than tier 1 and 2 supports and practices.

ED: How did you begin your career in early learning and development?

NT: I started my career as a nurse and was a visiting nurse for several years. When I had my own children, I became really interested in early childhood education (ECE). I knew how to physically take care of my children but didn’t know how to promote their learning and development. I decided to take some ECE classes and went back to school. I learned about the importance of the environment you create for young children and supporting social and emotional development. Eventually, I earned a degree in counseling. I thought it was critical to understand what is going on in children’s minds, what motivates children, and the best ways to support their growth and development. Then I decided to start my own business and opened a child care center to meet the needs of local women who were going back to work six weeks after having a baby. I was shocked because I couldn’t imagine, as a working mom, having to find care for a baby that young. I thought that with my background in nursing, education, and counseling I could create a child care center that would meet the needs of babies. We started out serving seven children and now, 33 years later, we have 25 employees and serve 110 kids ages 6 weeks to 6 years old.

JF: I graduated with a psychology degree and was thinking of applying to law school but decided to have children and work from home. I did this for many years while my children were young. I’m close friends with Nancy’s daughter and about eight years ago Nancy called me to see if I wanted to volunteer in her center and help her implement Pyramid Model/PBIS. I didn’t know anything about Pyramid Model/PBIS, but with my background in psychology it seemed like a good fit. I started out as a volunteer and loved it. I went back to school, took ECE courses, and earned my director’s diploma in early childhood education. Now, I am committed to our center and to implementing Pyramid Model/PBIS.

ED: What is the Pyramid Model/PBIS and why did you decide to implement it?

NT: For us, Pyramid Model/PBIS is all about being respectful to one another. You can walk into a center doing Pyramid Model/PBIS and it will take just a few minutes to realize that it feels different. Teachers are respectful to each other and the children, administrators are respectful to teachers, and staff are respectful to families. We actually teach children expectations and rules, and then we teach them strategies for sharing, making friends, and being kind. When I first learned about Pyramid Model/PBIS, I knew I wanted to implement it. There was an opportunity through our local early childhood intermediary unit to pilot Pyramid Model/PBIS. They offered to provide us with the initial training and a coach. We’ve been implementing with fidelity (the degree to which an intervention is delivered as intended) for 6 years. We’ve really seen it transform our center’s climate. There is much more collaboration and there is no gossiping; teachers really help each other out. Across the center we are clear and consistent about expectations of classroom rules and playground rules. We also use visual schedules to facilitate children’s understanding of what their day looks like.

JF: Nancy knew what she wanted to do, she just needed a name for it and some support. Pyramid Model/PBIS fits perfectly with her vision. Leadership is critical to implementation, so having her committed has been really important. Implementing Pyramid Model/PBIS isn’t easy; it takes about 3-5 years to get to a place where you are implementing with fidelity. It requires teachers being aware of how they talk to one another and to children. It is a tiered framework for figuring out how to support children in their social and emotional development. When implementing, centers must determine the specific strategies that will work best in their particular center. We have been focused on the bottom tier of creating a safe, warm, and nurturing environment. We have built in a lot of reward systems for the children; our goal is to catch them being good. Staff said they wanted a “reward” system too and soon the teachers started acknowledging one another, thanking each other, and recognizing accomplishments. Pyramid Model/PBIS really opened us up and bridged a gap we had with positive communication and collaboration across staff.

ED: How has your work with implementing Pyramid Model/PBIS improved the quality of early learning and development?

JF: We are a star 4 program (the highest quality) in our state’s quality rating and improvement system (QRIS), Keystone STARS. Implementing Pyramid Model/PBIS is a big part of why our rating is high. Children attending our center are happy; you don’t hear teachers yelling. The overall climate is wonderful. With Pyramid Model/PBIS, our teachers have been equipped with tools to meet the needs of all the children who attend. Twenty-five percent of our children are children with disabilities—our environment is an inclusive one. Pyramid Model/PBIS gave our teachers confidence to support all of the children, and to meaningfully collaborate with the therapists and special education professionals that come into our classrooms to work with the children with disabilities. Our teachers feel empowered to problem-solve and to figure out what works in an inclusive environment. In addition to the supportive climate we’ve created, our teachers take advantage of the great resources about implementing Pyramid Model/PBIS available online.

NT: Helping those with special needs is a priority for us and it has helped our overall quality improve. We regularly monitor children’s progress using the Ages and Stages Questionnaire (ASQ). Families don’t always catch when a child is struggling. We now have the tools to help parents, so if there is a real issue we can help families get the child the services they need. Pyramid Model/PBIS gave us a framework for understanding when a child may need more intensive intervention, and showed us the importance of monitoring children’s progress.

ED: What are some of the challenges you’ve encountered with implementing Pyramid Model/PBIS and any strategies you’ve used to overcome them?

NT: When change comes to a center there are those that will resist. When we decided to implement Pyramid Model/PBIS, I told our coach that some of our staff may not stay working with the center. In order for this to work, you need to have staff buy-in and for both administrators and staff to truly believe this approach is the right thing to do. I was prepared to potentially lose staff, and we did, but long-term Pyramid Model/PBIS has actually reduced our teacher turnover rate. I believe it’s because the teachers are happy and love to come to work. When we bring on new staff, they are supported by the veteran teachers. For example, if a new teacher starts and doesn’t know how to set up a classroom to maximize positive social, emotional and behavioral development, our veteran teachers will work with them and discuss what works and what doesn’t with a particular age group.

JF: Another big issue for us has been when we have a child with significant needs, but that child hasn’t been identified as qualifying for special education. We need extra help to support the child, and this can add a lot of stress for our teachers. At times we have hired extra teachers to provide the support. We know that if this child receives the interventions and attention early, they will thrive, but it can be hard for us as a small business. Our teachers are great at being resourceful and problem-solving; they usually get online and try to find creative approaches.

NT: Janine is the internal coach at the center. She works really hard to support our teachers when we have a child with more intensive needs. We are still trying to figure out what this support looks like, particularly when we don’t have access to other professionals to help us problem solve. We are seeing more and more children with behavioral issues, born with drug addiction, and with parents in jail; the kids and parents in these situations are tired, and it takes a lot of energy to help and support them. One solution we’ve found involves working with and educating families. We have shared a lot of Pyramid Model/PBIS resources with our families. When a child is really struggling with behavioral issues, we will collect and share data about the child’s behavior with their family and then develop a plan with strategies that can be used at both home and school.

ED: What suggestions do you have for others interested in promoting positive social, emotional, and behavioral development in young children?

JF: My advice for a program interested in Pyramid Model/PBIS is to start small, with easy and concrete steps for teachers. Lay it out for them and incorporate their strengths. For example, our teachers were really visually creative and focused on making things pretty, so one of the first things we did was to work on posting rules and expectations visually, including visual schedules that helped kids know what was happening each day. Also, implementing Pyramid Model/PBIS is a process, so be aware that you will likely have to go back and make changes to what you are doing. It really does take 3-5 years, so start small. Some other things we implemented early were bucket-filling books and beginning to teach children to recognize and understand different emotions. These were concrete strategies teachers could begin to use in order to see positive change.

NT: Also be flexible as an administrator. You may need to move teachers around. For example, we had to move a teacher to a different age group. You also need to think about how you staff your classrooms. I know that I want a teacher in each classroom that knows those children every day, so we make sure that happens; we staff our classrooms intentionally. We don’t put all of our kids in one big room at the end of the day. It is critical for kids to have their “own” room, and for the teachers in that classroom to really know them. My final suggestion is to be thoughtful about communicating with families on a regular basis.

JF: Hold onto your vision but be flexible. Take staff buy-in seriously. This can take time, but once teachers see the positive impact of the new strategies, they become more engaged. Providing structure, establishing clear expectations for kids, redirecting and replacing behavior with something positive—these strategies give teachers the tools to support all children. It is powerful when they use the strategies with a child with challenging behaviors and they see that it works. Our teachers also now recognize the importance of teaching kids social skills. Some children need to be taught how to play, make friends, and behave, and our center now has the tools to do this! Another important thing to remember is that Pyramid Model/PBIS looks different in every classroom and every center. It is an overall feeling of positivity and support among staff, children, families, and administration. It’s building a welcoming atmosphere as opposed to completing a checklist of things you do every day.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Another Journey

Note: April is National Autism Awareness Month.

The Bae family during trip to England

The Bae family during trip to England

Just like any other school day, Eugene, my son with autism, left on the bus this morning to go to a day program provided by our school district. For the last 20 years, he and I wait for the bus by sitting on our front porch. As he steps on the bus, he shouts at me with his happy high-pitched voice, “Bye Mom!” This is our ritual to begin each new day, to meet that day’s challenges, emotions, promises, and hopes.

In June this year, he will age out from the district program. I cannot help being emotional whenever I think about his first day of preschool and the journey that Eugene and our family have been on since then. On that day, I cried in the car for two hours after separating from my miserable, crying child.

Since that first day, school has been a challenging place for both Eugene and me. While Eugene was learning the alphabet and phonics, I studied the never-ending list of special education acronyms.

Just like other special education moms in this world, when my child cried about his school work, I wept on my steering wheel, but when he was happy in school, I felt like I had the world on a string. At times, figuring out how to navigate the world of special education for our son with autism while struggling with his atypical behaviors seemed like a brutal mission for a family like us, and we often felt we were not understood, not just because of our heavy Korean accents

However, our fundamental concern has not changed in these 20 years, and that is to help our son reach the final destination for his journey—Eugene being able to live an independent and inclusive life in the community. Of course, this is the same concern shared by thousands of moms and dads who have children with disabilities.

Young and Eugene Bae

Young and Eugene Bae

As a family we have had to adjust the sails of our ship quite a lot to reach this destination. We had to get past phrases like “below average range” or “socially maladjusted” since they were not helpful in steering the path for our son. As a family, we now see more clearly the incredible strengths and positive qualities of a young man who is able to say proudly “I am a person with autism.” We have learned that it is more helpful for us to make sure that Eugene is in the center of all service plans than putting systems first and having him fit around these systems.

Because of putting Eugene at the center, we have become more efficient in figuring out how to change the world around us and finding the resources we and Eugene need to reach our goal. As Eugene grew, our family grew too and our minds opened up to the new experiences that our son brought us.

I am not completely positive about Eugene’s future in the community. I see and feel the gaps between how my family and how society see the possibility of Eugene becoming a “successful” member of the community, and how we define success.

Many people still have a difficult time moving away from the stereotype that measures people with autism and other developmental disabilities as a social cost. However, I also believe that our society is moving in a better direction, becoming more able to envision a person with a disability as a valuable asset.

We have witnessed the notably increased capacity of our schools and workplaces to accommodate individuals with disabilities since the first form of the Individuals with Disabilities Education Act became law in 1975. These accomplishments were not possible without the sacrifices and efforts of so many parents, educators, and leaders of this country. Today, their legacy continues through the next generation of families, educators, and leaders, and it only expands as we as a family sail toward the final destination of our journey.

The next three months will be an interesting time for our family. Frankly, it makes me nervous thinking that Eugene will no longer be in the classroom. There will be no more IEP meetings to attend and no school buses to pick him up.

Eugene and our family know that this is a start of the next stage of journey. However, this time, Eugene will be the captain of the ship, steering us toward that goal of independence and community inclusion. This time, I am not crying; I will take a deep breath to prepare myself for another thrilling sea of possibilities and opportunities.


Young Seh Bae, Ph.D. is Executive Director of Community Inclusion & Development Alliance (CIDA) a federally funded Community Parent Resource Center in Queens, New York. She was a faculty member of Teachers College, Columbia University, and served as president of Korean-American Behavioral Health Association.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Evidence-based Practice and Autism

Note: April is National Autism Awareness Month.

Evidence-based Practice cake


Katie is an 18-month-old who does not respond when her mother calls her name, likes to watch spinning objects, and does not use words or gestures to communicate.

Jose is a 17-year-old student who gets stellar grades in all his courses, started the cyber security club in his high school, but he does not have anyone he can call his friend.

This toddler and teenager reflect the continuum of abilities and disabilities that is autism spectrum disorder (ASD).

As a society, we in the United States are doing a truly remarkable thing. We have made a commitment to provide an appropriate educational program in the least restrictive environment for children and youth with ASD and other disabilities, and to make sure that the practices in these programs are based on evidence of effectiveness.

But, where do teachers, other practitioners, and parents look to find out which practices are based on research evidence? We would not expect them to go to the research journals to search out the practices that work.

In 2007, the Office of Special Education Programs (OSEP) funded the National Professional Development Center on ASD (NPDC) to promote practitioners’ use of evidence-based practices. One of the first activities of the center was to conduct a comprehensive review of the focused intervention research literature. NPDC conducted an updated review in 2014. The review screened 29,000 articles on autism and identified 27 practices as evidence-based.

To identify interventions or teaching strategies by name and definition is not enough information to prepare teachers and others to use them in their work with children and youth with ASD. They need to be translated into specific, practical descriptions, with examples of how to use the practices to support learning and development.

With funding from OSEP, NPDC investigators created online modules for all of the 27 practices. The modules contain clear directions about how to implement practices and include video examples, fidelity checklists, and downloadable PDFs for all the module content. The website is free and has over 45,000 registered users to date.

It has become a major source of information about evidence-based practice for children and youth with ASD in this country and around the world. For example, over 400 teachers are part of the CAPTAIN Project in California and they are committed to incorporating these practices into their programs for children with ASD. The SOTIS program in Warsaw, Poland is using these practices in multiple autism preschool centers. Individuals from China, Italy, Saudi Arabia, Morocco, and Poland have voiced interest in translating the practices into their native language.

Knowledge about effective interventions does not stand still. In the years since the last review ended in 2011, we have located over 26,000 articles published on autism intervention and have launched an update of our previous review through the new National Clearinghouse on Autism Research and Practice at the Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill.

Over 150 reviewers are currently evaluating the quality of research articles to be included in this updated review. There is always new work to be done in this area and, pending funding, we hope to extend the review to interventions that have been conducted with adults with ASD and to conduct an annual update to the evidence base, including updating the online modules with new information from the research literature.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

“Voices from the Field” Interview with Bentley Ponder

Bentley Ponder

Bentley Ponder

Bentley Ponder is the Senior Director of Research and Policy at Bright from the Start: Georgia Department of Early Care and Learning (DECAL). Ponder oversees DECAL’s external research studies and manages internal evaluation projects, policy analyses, and ongoing data projects. Past and present initiatives include validation efforts for the state’s tiered quality rating and improvement system (QRIS), longitudinal evaluations of Georgia’s Pre-K program, development of policies related to the state’s Cross-Agency Child Level Data System (CACDS), research projects for the state’s Child Care Development Fund (CCDF) plan, and a statewide early education economic impact study. He helped write Georgia’s Early Learning Challenge grant application in 2013. He received his doctorate in sociology from Georgia State University and has been with DECAL since 2005.


ED: How did you begin your career in early learning and development?

Bentley: The Georgia Pre-K program (GA PreK), a lottery-funded educational program for Georgia’s four-year-old children designed to prepare them for kindergarten, recently celebrated a birthday—it is 25 years old! I stumbled into early education during the early years of GA PreK. Early childhood work wasn’t part of my career plans. While I was earning my doctorate in sociology at Georgia State University, I was looking for a graduate research assistantship. I ended up being hired by a research group at Georgia State University that was conducting the first longitudinal study of children who participated in the 1995 GA PreK program. At first I was just a data collector, but in 2001 the director of the study went on sabbatical and there was an opportunity for me to move into more of a leadership role. I began to interact with what was then the Georgia Office of School Readiness—it later became the Department of Early Care and Learning (DECAL)—and during those interactions, they got to know me and my expertise. When they decided to hire a researcher, they recruited me, and I have been here ever since.

I’ve had the opportunity to see DECAL and its emphasis on early learning grow. Our base is really the GA PreK program. We wouldn’t have a true early learning system without it. Although it isn’t our largest program, it has been foundational in setting high-quality standards, and it has allowed our state legislature to understand the importance of early learning for our state’s preschoolers. DECAL also oversees child care licensing, a federal nutrition program, and Georgia’s quality rating and improvement system (QRIS), Quality Rated. In 2012, we became the Georgia lead agency for the U.S. Department of Health and Human Services’ Child Care Development Fund (CCDF). We also house the state’s Head Start Collaboration Office, and administer an Early Learning Challenge (ELC) grant that was awarded to Georgia in 2013 and an Early Head Start-Child Care Partnership grant under which DECAL is serving over 200 infants and toddlers. Because we oversee all of these programs, we have the ability to look across programs, coordinate improvement efforts, and build a strong early learning system. It has also been fun to grow our research and evaluation unit. Initially, it was staffed by only me, and my primary role was to do a lot of data analysis. Now we have a team of six and the unit’s role has expanded to support the various early care and learning programs administered by DECAL. We have a robust research agenda and work closely with our early care and learning program directors to see what they need.

ED: What efforts have you and your organization been involved in to improve the quality of early learning?

Bentley: Our research and evaluation team’s primary mission is to ensure that we are using the latest research, data, and evaluation information to inform policy and practices across our early learning programs and grants. We focus on how to use evidence-based information to improve the quality of our programs. Our team is engaged in a number of different activities and projects. We do a lot of QRIS-focused research. At first it was just learning about what other states were doing; we weren’t ready to implement a QRIS but wanted to learn from others. We funded a quality study that took a sample of classrooms across the state, including infant-toddler, preschool, and GA PreK classrooms. Findings indicated that the majority of our infant-toddler programs fell in the low-quality range. Our PreK classrooms had good structural quality, but they needed to focus on the quality of teacher-child interactions. DECAL leadership used these results to inform some of our improvement efforts. For example, DECAL developed a cadre of infant-toddler specialists who support our infant-toddler programs to improve quality, and created professional learning communities for preschool and PreK teachers that focus on those critical positive teacher-child interactions. DECAL also used the findings from the quality study to help design our QRIS.

Some of our research and evaluation work is done in-house, and for some we hire outside contractors. When managing these contracts, we place a lot of emphasis on ensuring that the work they do is grounded in our context and connected to our programs.

ED: What are some of the challenges you have experienced in this work and what strategies have you tried to overcome them?

Bentley: Our research and evaluation team is big enough to be its own unit, but not big enough to conduct randomized control trial studies or manage complex field data collection for DECAL. One of the challenges is figuring out what we can do directly and when we need to bring in outside contractors. Another challenge has to do with embedding research and evaluation into the overall mission of our agency. We have done a good job of asserting our team as an important part of the agency, but this can lead to challenges in being objective researchers. We are attached to our programs and we want them to be successful so this can be hard. This is an example of where it is really important to bring in outside contractors.

Another challenge is ensuring our team has the capacity to address all of our priorities. There is so much work to be done and sometimes we have to make decisions about what is most important. For example, I wish we published more. We have so much to share about the interesting work we are doing but, given our capacity and time constraints, publishing usually doesn’t rise to be a priority. One thing that helps with prioritization is if we have funding for a specific project. Currently, completing the validation study under the ELC is my priority.

ED: What suggestions do you have for others interested in expanding access to high-quality early learning opportunities?

Bentley: I really believe that having a research and evaluation unit housed within our agency has infused the importance of research, evaluation, and data as part of our agency’s culture. Our program directors and agency staff embrace and use data and research on a regular basis to inform policy and programmatic decisions. They value the studies and evaluations we conduct, and use the information when deciding how best to use resources and improve programs. I’d encourage other early learning agencies to build a research and evaluation team, or figure out how to bring folks with this expertise into their regular work.

One specific example of how we’ve done this is through our QRIS validation study. We created an internal committee that includes staff involved in our QRIS, researchers, professional development specialists, and infant-toddler specialists. Since the beginning of the study, we have met every two weeks to dive into the data. It has been so beneficial in understanding and being able to use our data. I also encourage others to involve and engage program and other early learning staff in research, evaluation, and data work. If your research, study, or data analysis isn’t beneficial to the program and children being served, then why are you doing it?

A final suggestion is to consider that as researchers we need to be careful and not go overboard with our evaluation efforts. You don’t always need to conduct a survey or do an in-depth study, because sometimes useful information can be found elsewhere!


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Bentley Ponder - thumbnail image
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Senior Director of Research and Policy at Bright from the Start, Georgia Department of Early Care and Learning (DECAL)

“Voices from the Field” Interview with Monica Adrian

Monica Adrian

Monica Adrian

Monica Adrian is a program manager and behavior support specialist for the Merced County Office of Education (MCOE) in California. She has created and helped establish innovative programs that focus on developmental screenings and social skills and behavioral intervention. These programs include Caring Kids, which provides training and support for parents, teachers, child care providers, and social workers. Adrian is an Act Early Ambassador to California for the Centers for Disease Control and Prevention’s Learn the Signs. Act Early campaign. In this role, she helps promote ongoing developmental monitoring; helping children with delays get connected to needed early intervention services in a timely manner.


ED: How did you begin your career in early learning and development?

Monica: Right out of high school I got a job working in a U.S. Department of Defense child care center at the U.S. Air Force base that was in my town at the time. I immediately loved it and knew I wanted a career working with young children. I worked at the child care center while I started college, first earning an associate’s degree in psychology, and then a bachelor’s degree in liberal studies with an emphasis on child studies. After college, I worked for five years with children with autism and their families in their homes; at the same time earning my teaching credentials in special education. When my son was born, I had planned to take a few years and stay home with him. However, when he was three months old, I received a call asking if I was interested in working for Caring Kids, a program that works with families to help their young children from birth to age five develop socially and emotionally. I realized that I missed the work of helping young children to build social skills and reduce their challenging behavior. I took the job and have continued to work with various programs that similarly focus on helping all children reach their potential. I also believe that as a professional I have the responsibility to continue to grow and learn. A year ago, I decided to go back and get a master’s degree in special education with an emphasis on early childhood and I’m almost done!!

ED: What is the Centers for Disease Control and Prevention (CDC) Learn the Signs. Act Early campaign, and can you describe your role as the Act Early Ambassador to California?

Monica: Learn the Signs. Act Early. is a public awareness campaign that aims to educate families and caregivers about young children’s development and developmental milestones with the ultimate goal of improving caregivers’ support of early development and increasing the early identification of developmental delays and disabilities. Currently, the campaign has 45 Act Early Ambassadors across the country (California has two). Being an ambassador is a two-year commitment. Our role as ambassadors is to promote ongoing developmental monitoring in our state, and to help make sure young children exhibiting developmental delays are connected to early intervention or early childhood special education services as early as possible. We know that many kids with developmental delays or disabilities are often not identified until they go to school at age five, but this is inconsistent with what we know about brain science and the importance of intervening early. We’ve worked hard with different groups of professionals (doctors, social workers, child care providers, and others) to encourage them to move away from the “wait and see” approach, sharing with them the importance of identifying concerns early. This allows for children and families to be connected with appropriate services and interventions. So many different professionals and family members see and spend time with young children regularly and we want everyone to know what typical development looks like. We want to help families promote optimal development and also be able to identify when there should be concerns with development. Learn the Signs. Act Early. has developed evidenced-based and easy-to-use tools and resources for families and professionals which are free and easy to order. Some of my favorite resources are the Watch Me modules developed for child care providers. These modules train providers on why monitoring children’s development is important; what their role in developmental monitoring is; easy ways to monitor a child’s development; and how to talk with families about their children’s development. Child care providers can access the modules for free in English and Spanish and in using them, can even earn continuing education units (CEUs) or professional growth hours. We are working with the California Department of Education so early educators can also access the Watch Me! modules on California Early Childhood Online.

ED: How has your work improved the quality of early learning and development?

Monica: Merced County is in the central valley of California, right in the middle of the state. This is a region of high needs with minimal resources or services. Through our county office of education’s Early Education Department, we administer several programs that help to ensure quality early care and education services for our community. Our programs focus on promoting optimal development for all young children since we know the impact early experiences have on later academic, health, mental health, and employment outcomes. Most of our programs focus on young children at risk for developmental delays and negative outcomes later in school. We work to help families provide safe, stable, and nurturing environments. Many of the families we encounter live in poverty or are dealing with multiple stressors; this work is hard since we usually can’t remove the stressors. Our goal is to help parents build resiliency and provide a buffer from stressors for their children in spite of the adversity they experience. Given many of the children we work with live in families with pervasive—or, wide-ranging—needs, our approach is multi-generational. Our philosophy is that parents are their children’s first teachers, but parents also need support to fulfil this role. We want to implement a process that supports families in being fully present with their children.

I supervise two programs. First is the Caring Kids program I mentioned earlier. Through this program, we provide home visiting services to young children displaying challenging behavior or delays in social skills, and facilitate weekly social-skills-building playgroups and parenting workshops around the county. The second, our Early Connections program, is a collaboration between our county office of education and our county human services agency. This program conducts developmental screenings with children from birth to age five who have had substantiated cases of child abuse or neglect, and then connects the identified kids to any needed follow-up services. In order to act on the federal mandate that requires all of these children to be screened, our county tasked the Merced County Office of Education’s child development staff, who had the most relevant expertise, to conduct the screenings. They work closely with social workers from the human services agency, a collaboration which has been critical for many of the children with the greatest needs in our county.

ED: What are some of the challenges you have experienced in this work and what strategies have you tried to overcome them?

Monica: One of the challenges is that, as we push to identify more children with developmental delays and disabilities earlier, we need to ensure that the services and service providers who understand how to work with them are available. We really have to look at current systems and policies; identify early learning and intervention champions across disciplines; and empower them to communicate to decision makers the importance of increased funding for mental health and early intervention services, and for programs that are multi-generational. Given the research base, we should be able to make the case to decision makers that investing in these early programs will have long-term financial and social benefits. We really need to think about where we as a community invest our funds. When thinking about how we can better prepare children to enter school on a level playing field, the answer is more than just preschool. We need to look across different systems. As I mentioned before, one useful strategy is to identify champions, like a local school superintendent or principal who understands the importance of early experiences. Individuals in the medical field can also be really helpful advocates. I’m really excited that doctors recently coming out of medical school seem to have a strong understanding of the importance of developmental screenings—we should capitalize on their expertise and the fact that their perspective is one that is likely to influence policy makers.

ED: What suggestions do you have for others interested in promoting developmental screenings?

Monica: Engaging a wide range of stakeholders is really important. Start by having conversations about the importance of developmental screening and how professionals and families can play a role in this. Build a collaborative team of people that represent different agencies and disciplines, be sure to include families, and create and continue to follow an action plan. Consider important questions with this group: What is the vision for children’s future in your community? How does developmental screening fit within this vision? Try not to recreate the wheel; utilize the various resources that are already out there. In addition to resources from Learn the Signs. Act Early., there are great tools available via the U.S. Department of Health and Human Services’ Birth to Five, Watch Me Thrive website. Many states also have a Help Me Grow initiative, which typically focuses on providing resources to best promote developmental screening and monitoring. You can also contact the Learn the Signs. Act Early. ambassador in your state or territory for support.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Monica Adrian
Posted by
Program Manager and Behavior Support Specialist, Merced County Office of Education (MCOE), California

ED Welcomes OSERS Assistant Secretary Johnny Collett

Johnny Collett

Johnny Collett

The U.S. Department of Education welcomed Johnny Collett, the new U.S. Department of Education assistant secretary of the Office of Special Education and Rehabilitative Services (OSERS), on Jan. 16, 2018.

Collett, a former high school special education teacher, has served as the program director of Special Education Outcomes at the Council of Chief State School Officers (CCSSO) and as the Kentucky state special education director. Collett has also served as an assistant division director and exceptional children consultant both at the Kentucky Department of Education.

Collett will lead OSERS towards its mission to improve early childhood, educational, and employment outcomes and raise expectations for all people with disabilities, their families, their communities, and the nation.

OSERS comprises the Office of Special Education Programs, which administers the Individuals with Disabilities Education Act (IDEA), and the Rehabilitation Service Administration, which administers titles I, III, VI, and VII, as well as Section 509 of the Rehabilitation Act of 1973, as amended by title IV of the Workforce Innovation and Opportunity Act (WIOA). OSERS’ Office of the Assistant Secretary administers a number of special projects.

Challenges and Barriers to Successful Employment for Man with Visual Impairment

By Louis Herrera

Louis Herrera

Louis Herrera

I was born with normal eyesight, and at the age of three and a half it was determined that I had a visual impairment. By the time that I was about seven years old, I had lost most of my eyesight.

At the inquisitive age of four, I wanted to know how things work and how a box could have different voices coming out of it. Learning about radios was the beginning of a path to a career in the technology industry.

At the age of 15 I built my first computer at a time when components were starting to decrease in size.

Jerry-Rigged IT Systems

In the early 80s, I went to work for a Fortune 500 aerospace company. I was hired as an “experimental employee” because they had never hired a blind person before.

Back then there was hardly any assistive technology to speak of. Several companies were starting to develop a screen reader for MS-DOS, but in many cases these screen readers only worked with some specific programs.

Some of us with visual impairments, in order to maintain our jobs, had to be creative and figure out a way to generate speech output.

For me, I used an old Votrax speech synthesizer like a printer driver. Every time I wanted to know what was on the screen, I executed a print command that would convert the data on the screen to a format that Votrax could read and then speak aloud in probably the worst speech synthesizer voice that one would want to hear. Nevertheless, I was able to get the job done.

As technology continued to evolve in terms of processing speed and better video graphics, it paved the way for the beginning of a graphical user interface, which today is commonly known as Windows. This progress made it difficult for the blind user to keep up with the new changes because the screen reader at that time could not accommodate off-the-shelf hardware and software improvements. Partially-sighted people had to modify video settings to accommodate their visual requirements.

Mobile Devices

As technology continued to move towards a touch screen environment with no real interaction solution for the blind consumer, it seemed as though the blind and individuals with various degrees of visual impairment would not be able to move away from conventional mechanical user interface technology like the flip phones with the tactile keypad.

Once multilayered technology was introduced to hardware and software developers, companies like Apple and Google started to develop a user interface that consisted of gestures and tapping concepts that allowed for the interaction and execution of commands and operations.

As part of their Universal Access initiative in 2007, Apple introduced VoiceOver, a screen reader output interface for the iPhone 3GS. Apple demonstrated that touch technology could be made accessible for everyone, and in today’s work environment mobile technology is something that we all depend on.

We still have to deal with third-party applications that have the potential to be used by the visually impaired community, but we can’t use these apps because the developers either are not familiar with accessibility coding guidelines or choose to make apps more visually appealing in the hope that screen readers will provide a level of accessibility for the blind or visually impaired user.

One of the first barriers that we had to deal with had to do with educating the developers on what text-to-speech technology is and how it differs from speech recognition. This has been a problem for a long time and will continue to be a problem that affects us because developers believe speech recognition programs meet our needs. The reality is that these programs make it possible to receive speech input, but they do not read what appears on the screen.

In the case of smartphones, many app developers feel that built-in artificial intelligence (AI) programs are the same as the devices’ built-in screen readers (Apple’s Siri vs. VoiceOver, Android’s Google Assistant vs. TalkBack, Windows’ Cortana vs. Narrator) and that the built-in AI programs are all the visually-impaired user requires. Unfortunately, these AI programs are voice-driven search services that will in most instances provide audio feedback, but they are not screen readers that function without internet connectivity.

The issues described above are quite common in the desktop environment as well. The best way to resolve this issue is by requiring developers to submit their applications to a level of accessibility compliance verification before an application is deployed.

Technology in the Workplace

While technology has come a very long way and has made it possible for the blind and visually impaired to be competitive employees, there are many road blocks to still overcome for equality in the workplace.

Even with all the new advances in technology and software development today, blind or visually impaired professionals are still encountering barriers with their ability to carry out their job duties.

For example, the idea of providing PDF file attachments so that anyone, regardless of the platform being used, should be able to open the file can sometimes be an issue for some of us that use screen readers or screen magnification tools.

Often because of company policy, we are issued a computer equipped with a common commercially-available PDF reader, which does not do well making PDF images accessible. Some companies, like my employer, have smart printers/copiers that can scan a document and generate a PDF image that is not easily converted to text that can be read by the screen reader. Sometimes it is easier to print the image file and then use an optical character recognition tool to scan and read it. This is time consuming and a waste of paper.

Another on-the-job issue that we face is a lack of quality interaction and support with Information Technology (IT). While the IT staff is able to maintain and support staff using the general issued computers and software, they often don’t have the knowledge or experience to install, configure and maintain the adaptive technology.

If the IT specialist installs the specialized adaptive software, many times they do not install it correctly causing the program to fail to operate properly or at all due to the lack of the resource requirements needed for the software to run efficiently.

This is like keeping a car engine pristine with four flat tires.

In many cases, permission to update the software as needed is denied due to company policies, which leaves the assistive technology unable to keep up with the many updates and changes that the operating system and other programs the IT department regularly update to keep the hardware and software running at peak performance.

Support in the Workplace

My previous job as well as other companies will hire an assistive technology specialist to install the needed software and provide specialized scripting for the software to run on the company created software.

The software runs great until the first major update the IT specialist pushes to all computers on the network. This can affect scripting performance that was created so that the disabled user could fulfill his/her job. Often the assistive technology user has to make due with inadequate software accommodations until the company will bring in the assistive technology specialist again at a substantial fee to reinstall the scripts or create new ones if needed.

These costs and roadblocks could be minimized if employers include the employee who will be using the assistive technology so that he or she can provide input during the discussion and planning phase up to the point that it gets delivered and installed.

Developing and implementing all-inclusive collaborative meetings to address assistive technology needs will yield a more positive interactive communication and success among all participants.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Our Highs are Higher

Carrie Woodcock and her family posing in front of a lovely rural stream

Carrie Woodcock and family

Carrie Woodcock is director of the Maine Parent Federation and a parent of 10-year-old Sami who has Down syndrome.


This summer, I attended a conference alongside doctors, nurses, physician assistants, therapists and other medical professionals, all of whom work with children with special healthcare needs and disabilities. I was there to represent parent voices as the director of the Maine Parent Federation, an OSEP-funded Parent Information Center. I am a big supporter of, and was very excited for, the keynote presenter that day, Dr. Brian Skotko.

Dr. Skotko is a genetic specialist and co-director of the Massachusetts General Hospital Down Syndrome Program. He has also gone on to facilitate the creation of many such clinical programs throughout Massachusetts. I was first introduced to him at the annual Massachusetts Down Syndrome Conference. I was so impressed with our first encounter that now, whenever I attend events at which he’s speaking, I always attend his sessions—regardless of their subject matter—and  always walk away having learned something new.

At the conference we attended this summer, Dr. Skotko discussed the impact of a Down syndrome diagnosis on the immediate family. He and his staff had conducted some of the first surveys of parents, siblings and individuals with Down syndrome. To say that I was thrilled that a physician and sibling of an individual with Down syndrome himself took this opportunity to raise awareness for family engagement, a crucial subject many times overlooked by medical professionals, was an understatement. His data were brought to life by his personal experiences, and were overwhelmingly positive. They indicated that a large majority of surveyed immediate family members love and are proud of their family member with Down syndrome.

During a question and answer period following the presentation, a professional in the front of the room challenged some of the data Dr. Skotko had presented. She brought to his attention that perhaps the data were positively skewed because parents and family members would have guilt associated with speaking negatively about their experiences and, ultimately, their own family member. Well, I am not one to hold my tongue, but I did have to pause to ensure I reigned in my “mommy” emotions and represented the parent voice in an assertive yet positive way.

In that moment, memories from my 10 years of being a mom to my precious gift rushed back. Some of the first feelings to come back to me were those that I have been ashamed to admit as a parent. For example, the diagnosis at my daughter’s birth had me thinking that I would always be a parent to a child living at home. The hours in the hospital enduring her open heart surgeries had brought me emotionally to my knees, wishing my child was healthy. I recalled the times her anxiety caused bathroom accidents in public places, which had me wishing for normalcy. Listening to friends talk about their gifted and talented children had me feeling like an outsider. I remember feeling sad because the birthday party and play date invites were few and far between, if at all. For a second I thought that maybe this woman was right; maybe I do sugar coat my family’s reality because I am too ashamed to admit otherwise.

But in the next moment, I saw Sami’s hand reaching for my mom’s face, days after open heart surgery. This was the first expression of her personality shining through. I remembered my toddler son translating her words and being so proud that he was the only one who could understand her. We celebrated her first everything and then celebrated her first everything all over again when she regained a lost skill. I recalled the way that, no matter where we are, she makes people smile, no matter what kind of day they may be having. And the oh-so-many little things in life I would have completely overlooked were it not for her.

I gathered my thoughts, raised my hand, and explained this concept to the group. In fact, the professional that asked the question was right; the challenges are hard and often. We do have doubts about our ability to parent and yes, horrifyingly enough, we will ask “why me?”

However, we celebrate and appreciate all that is positive. We do this in a way that is bigger than any outsider could know, and we do it time and time again. The impact has been so positive—my family completely changed for the better the moment Sami came into our lives. In addition to the daily joy we experience with her, all of us are dedicated to her cause, and the cause of others. My professional career has shifted from sales and marketing to assisting families with their own special loved ones. My husband, who was and still is a physical education teacher, has brought her spirit to the way he interacts with his students, including those with special needs. Lastly, but perhaps my proudest family accomplishment, is how Sami refers to her 13-year-old brother as her hero. No matter the circumstance, he shows no embarrassment towards her, only love and admiration.

I summed up my comments that afternoon, and I’ll leave the same simple thought for you here. “You see, our lows may be lower at times, but our highs are more often, and they are always so much higher. We wouldn’t dream of trading it for anything!”


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Carrie Woodcock and daughter, Sami.
Posted by
Director of the Maine Parent Federation and a parent of 10-year-old Sami who has Down syndrome.

Helping Youth Meet Their PROMISE

PROMISE: Promoting the Readiness of Minors in Supplemental Security Income

What is PROMISE?

Promoting the Readiness of Minors in Supplemental Security Income (PROMISE) is a five-year research project that advances employment and postsecondary education outcomes for 14–16 year old youth who receive Supplemental Security Income (SSI). PROMISE began October 1, 2013 and will continue until September 30, 2018. The program is an interagency collaboration of the U.S. Departments of Education, Health and Human Services, Labor, and the Social Security Administration. Under this competitive grant program, state agencies have partnered to develop and implement model demonstration projects (MDPs) that provide coordinated services and supports designed to improve the education and career outcomes of children with disabilities receiving SSI, including services and supports to their families.

2017 represents the fourth year of the projects (the first year was primarily dedicated to recruitment and enrollment). Thanks to the ongoing efforts to support families and youth, we look forward to hearing about bright future outcomes for the thousands of youth and families being served by PROMISE.

Further information is available at the PROMISE TA Center:

PROMISE TA Center logo

 

PROMISE Success Stories

Model Demonstration Project Success Stories

The PROMISE MDPs were created to facilitate a positive impact on long-term employment and educational outcomes by reducing reliance on SSI, providing better outcomes for adults, and improved service delivery by states for youth and families receiving SSI. The six MDPs are comprised of 11 states:

Under the Workforce Innovation and Opportunity Act (WIOA), projects are coordinating with vocational rehabilitation agencies so that youth are receiving pre-employment transition services, to include paid employment. By April 30, 2016, the MDPs recruited a total of 13,444 youth and their families with half of them receiving intervention services targeted around improving outcomes in employment and postsecondary education.

Personal PROMISE Success Stories

Cody—a Youth with Promise

Wisconsin PROMISE

Cody is excelling as a student at Burlington High School and employee at McDonalds. He plays video games, rides bike, and is learning to drive and weld. His goal is to be a welder after college. Cody was born with a brain tumor and has just one hand, but that’s not stopping him.

He’s a youth with Promise, on a journey to achieve his personal, educational, and career goals.

Watch Cody’s story on YouTube.

Xavi’s Story: Youth with Promise

Wisconsin PROMISE

She’s like most #teenagers… she hangs with her cats, dances with her friends, and loves Criminal Minds. She’s also going to have a lung removed. She’s a youth with Wisconsin Promise, on a journey to achieve her personal, educational, and career goals. Xavi shares her dreams, challenges, and the steps she’s taking with Wisconsin Promise to plan for her future.

Watch Xavi’s story on YouTube.

Dorian Shavis—A Firm Foundation

Arkansas PROMISE

As someone who expressed an interest in architecture, one of the Arkansas PROMISE youth participants expressed his desire to work at an architectural firm. Working with the local workforce board, Arkansas PROMISE staff set up an interview with a local architectural firm and secured an internship that resulted in the PROMISE youth and the firm staff learning from one another.

Watch Dorian’s story on YouTube.

More PROMISE Success Stories

You can find many more PROMISE success stories at:


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.