The missing Piece

Written and Photographed by

Hannah Hansen

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This book is dedicated to the wonderful and amazing individuals who work and attend the After School Socialization Program at Abilities United. It is their amazing program which inspired me to learn more about devel-opmental disabilities and therefore write this book. Each individual in the program has played a significant and special role in the composition and connection of this book.

DEDICATION

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Acknowledgements

This book would not have been possible without the help of Abilities United, and most specifically Misty Accristo. Without Misty’s willingness to help profile the After School Socialization Program, this book would not be where it is today. I would also like to extend special thanks to our interviewees: Jennifer Myers, Pau-line Navarro, Elyssa Olson, and Kimberly Farrar. Through their profound insight and thought-provoking stories, I built a greater connection to the topic. In addition I would like to thank the kids in the program as well as their parents, who allowed us to film and photograph their precious children.

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Table Of Contents :

Foreword.................................................................... 9

Introduction.............................................................10

CHapter One: A Hidden History................................... 12

CHapter two: Effective Education..........................14

chapter three: The Epidemic of Age..........................16

chapter four: Personalized Programs..................... 19

chapter five: Normalcy is Undefined..................... 25

chapter six: Personal Powers................................. 27 7

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I remember the first day I visited Abilities United. Overwhelmed with expectations and preconceived ideas, it was nothing I had expected. As I stepped into the small room of the After School Socialization Pro-gram I was overwhelmed with the sight of puzzles, books, and games. My eyes began to scan the faces of the various ages and kids enrolled in the program. Looking at their unique and beautiful features, I was struck with an unusual kind of fear. My confidence began to wither as I questioned my ability to interact with the kids. How would I talk to them? Would I offend them? Would they hate me? It wasn’t that I didn’t want to talk to them, but my natural instincts told me to let them be. As I wrestled with my fear and draw to remain a spectator, I was suddenly caught in an enormous hug. Given to me by Tim, a young man I had just met in the program, I was snatched away from my worry and discomfort. With this abrupt welcome the rules of society shattered and I was able to see that each individual at the After School Socialization program was like me in some way. There was no need to act differently around them, for they were my peers. We were all equals and we all deserved to be treated the same, no matter our differences. Abandoning society’s messages to ignore or “let be” those with developmental disabilities revealed the ever so important reality that interaction is the answer, not indifference.

Foreword

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Introduction : What defines a “normal” seventeen year-old? Is it how well they do in school? Their participation in the community? Or how they look? Defining a normal seventeen year-old is impossible, it can never be done. There is no right way to be seventeen, twelve, or even forty years old. Each person is unique with different strengths and weaknesses, propelling them into becoming their own individual. So how is it that our society has defined a “normal” and urged everyone to measure up to it? And what happens to those whose differences make the defined “normal” impossible? This story is often told, but not so often examined. The life of a child with developmental disabilities is one filled with struggles and joys shared among their parents, and their teachers. So often many discuss the struggles faced by individuals with developmental disabilities but forget to learn what the giant term encompasses. The dictionary defines the developmentally disabled as, “having a physical or mental disability that becomes apparent in childhood and prevents, impedes, or limits normal development” (Merriam-Webster). This widely used term is highly unspecific in determining the distinct struggles and attributes unique to each individual with developmental 10

disabilities. No two people are the same, and therefore there is no “quick fix” or “easy way out” of providing support to the one in every six children who have a developmental disability (CDC). Few programs and places remain which understand the unique attention these individuals require and deserve. One program that has survived through constant budget cuts is Abilities United. Abilities United has acted as a pioneer in redefining the normal expectations of our hectic world by organizing specialized programs for those with disabilities. Within this organization lie many wonderful programs, most specifically the After School Socialization Program. This program works to supply ages five to twenty-two with the social skills to help integrate them into the community. With an increasingly wide demographic of children born with developmental disabilities, it is amazing how little attention and support this group receives in our community and government. This lack of at-tention is not only manifested in lack of funds, but also the age limit for government support. At age twenty-two, kids are expected to fend for themselves and are denied government help. Secluding the issues sur-rounding the developmentally disabled, those who do not have children with disabilities are often out of touch with the issue and don’t realize the importance and urgency of programs, funding, and overall support. Plagued by the positions of indifference, the vast majority of people find no interest in the issues surrounding disabilities and ques-tion why programs for those with developmental disabilities matter. These programs serve not only individuals with developmental disabili-ties, but also their families and their loved ones. Abilities United provides the coaching and support that is desperately needed by families as they struggle with unique challenges and situations. Programs such as those organized by Abilities United, in addition to special education, provide the necessary support to create an atmosphere where individuals with developmental disabilities can grow and create their own unique role in society. 11

Chapter One The treatment of the developmentally dis-abled has evolved much throughout the course of history. These monumental decisions and progres-sions have hardly received the celebration or atten-tion they deserve. Preoccupied with wars, celebri-ties and politics few know the progression of rights for those with disabilities. Seen as unimportant, or simply irrelevant, the history of special education and the treatment of those with disabilities have been hidden away from the majority of the public. In order to expose the truly exhausting journey of education for those with disabilities, one must understand the progression from no program or acknowledgement, to the mandatory programs required in all public schools. In the early 1900’s students with disabilities were thought of as a bur-den and often pushed aside without the proper attention. Most shocking were the policies in 1910 excluding the most severely retarded children from public schools and creating state institutions to care for them (Franklin 31). These institutions were often poorly kept and often ignored the child’s individual needs. This harsh treatment began to fade and finally diminished in the 1960’s when schools and parents realized the need for a special education program. The first attempt at reform consisted of pushing all students who had trouble succeeding into one “ungraded” class. Although believed as a beneficial situation for all involved in the program, lack of a specialized curriculum destroyed any hope for improvement. Ultimately, these classes only 12

had the teachers’ and typical students’ interests in mind as they strove to remove the ‘distractions’ of students with disabilities (Franklin 46). As administrators began to realize the lack of progress in the unorganized “ungrad-ed” classes, they began to usher the education of simple skills to those with disabilities. Although appearing as a mode of isolation, by teaching those with developmental disabilities simple skills, schools had now uncovered a way for these individuals to become active members in society. By learning simple skills, children who were once sidelined began the journey of integration into society. This new idea of channeling mentally retarded children into unskilled lines of work continued to play a role in the special education that was provided during the 1900’s (Franklin 43). Simultaneously various applications were tried in attempts to discover the best way to educate those with developmental disabilities. Testing differences in class size, curriculum, and teaching tactics, teachers and school administrators soon discovered that those with developmental disabilities truly needed individual and special-ized attention (Franklin 120). Long overdue, this realization prompted parents in the developmetally disabled community to take action. During the 1970’s many parents stood up for additional aid to help the students with developmental disabilities. This discontent continued to grow until the Individuals with Disabilities Education Act or, IDEA, was passed in 1975 (U.S. Dept. Of Ed.). Requiring specific intervention from a young age, IDEA requires every child born with developmental disabilities to have the same education opportunities as the typical child.

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Chapter Two :: The Individuals with Disabilities Education Act has made a huge difference in the national public school-ing system, but yet it still receives much dispute from parents and therapists. The biggest position for dispute is IDEA’s specification of putting children with developmental disabilities into a “natural environment.” While many believe that individuals with developmental disabilities need to be placed in an environment where they can interact with the children their age, others believe they should be separated from their age level and be given a specified curriculum separate from children performing at the “normal level” (Richert).As a compromise many feel that the definition of a “natural environment” is merely a combination of personal attention and the socialization of a classroom environment. By focusing on individual curriculum to target each individual’s personal challenges, students with developmental disabilities are given the opportunity to progress at their own rate. In such a unique environment, students are able to accomplish specific goals and make strides in reaching a more personal definition of capability. Jennifer Myers--author, advocate, and mom-- believes in a change to the natural thoughts of equal education. To her equal education is equal opportunity, not the menial facts of if her child is sitting in a classroom with typical students. Myers specifies the importance of individualized attention in the educational progression of her son, Jack, an eleven year-old with Autism (Myers). Many parents agree with Jennifer and urge the public to realize each child will not have the same successes. Even with IDEA, and special educational programs across the nation many still ask why the education of those with developmen-tal disabilities is important. 14

Special education programs are vital to the growth of students with developmental disabilities be-cause they provide an environment where they are able to receive guidance in a crucial time of devel-opment and growth (Snell). Hav-ing special education in our school system is as vital as the system of having grade levels. You cannot put a fifth grader and a tenth grader in the same classroom and expect them to perform equally. Just like you wouldn’t expect a fifth and tenth grader to perform equally, one must accept that children with dis-abilities need personal attention to perform to the best of their abilities.

Accomplishing specific and individualized goals, the special education system is an example of what education stands for. Educa-tion is not merely a program for the betterment of youth, but it is the message of helping each individual to become their best, and increase their knowledge. Special education programs reaffirm the strong educa-tional philosophy of giving everyone equal opportunity in building their intelligence.

Chapter Two ::

The special education pro-gram reaches out to the once-for-gotten members of society helping to create a support system where they can thrive.

“We need to educate the population we are talking about, people with developmental

disabilities, but we also need to educate the

typical kids...” -Jennifer Myers

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Chapter Three::

With new advancements in special education it may seem as if the issue of supporting those with de-velopmental disabilities has been solved, but what about when individuals “age out” of the program? Although it presents a huge issue within the developmental disabilities community, this topic is often forgotten and rarely discussed. Often families and students find great support while attending the school programs supported by IDEA, but once the student turns twenty- two they are expected adults and pushed out of almost all government funded programs and special education. This worry of ‘what’s next’ consumes many parents and families with fear, as their loved ones reach the dreaded age of twenty-two. One current manifestation of the severity of this rarely dis-cussed issue was the recent murder in Sunnyvale, California. On March 7, 2012 Elizabeth Hodgins shot her 22-year old autistic son and then herself (Rusk). This hor-rible event exemplifies the helplessness one mother felt for her son’s future. Turning twenty-two, he was aging out of the school and government programs. Feeling overwhelmed, the mother sadly took her innocent son’s life. Reducing the story to a helpless mother who had to deal with unimaginable struggle, the media has lost the entire point of this immense tragedy. Reducing the victim to a “list of burdens” they have somehow justified the mother’s behavior (Myer). Justifying the mother’s act, they have lost the fact that this young man was denied the right to life because of something that was completely out of his hands. Age in the world of developmental dis-abilities means very little. A twenty-year old young man with disabilities may only have the cognitive skills of a 16

five-year old, but yet he is expected to be fine in the fast-paced world we live in today. Would you let your five-year-old son wander the streets looking for a job? No, you would not abandon your child if they were not ready. This concept of leaving your child alone to fend for his or herself in a world they are not ready to face is exactly what the government is doing to the developmentally disabled. Abandoning kids at what can be the most monumental time in their life, the government somehow dismisses them from the aid they provide from the time they are born until they turn twenty-two.

Working against the clock of age many programs set out to prepare kids with skills they can use to integrate into aspects of the community. Focusing specifically on socialization is key because being able to communicate is a central to becoming a part of society. Even with extensive budget cuts, there are still programs such as the After School Socialization Program at Abilities United, which give students’ social-ization skills to assist them in the real world.

“It was a horrific tradgedy that could have

been prevented...”- Misty Accristo

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Chapter Four

Programs specially designed for students with disabilities act as catalysts furthering a student’s progression individually and socially. Beginning as a way to help those with disabilities learn skills to apply in the real world, these programs revolutionized the way parents and teachers looked at students with disabilities. One of the larg-est organizations for individuals with disabilities, Abilities United, was itself started by a group of parents in the 1960’s who had babies with developmental disabilities. Looking for a place to take their children, they were stark-ly recommended to institutionalize their children. Instead of institutionalizing their children they decided to begin a program to specifically help those with developmental disabilities as well as their families (Abilities United). This vision expanded into an education and support group, which has come to be known as the Early Intervention program. As their children grew, so did their organization. Abilities United is now comprised of the Early Intervention Program, After School Socialization Program, Respite Program, Independent Living Skills, Employment Services, Adult Day Activities Program, and Computer Education (Accristo). One of the most compelling of their services is the After School Socialization Program. Serving ages five to twenty-two this program is different from others because it is not simply a daycare program, but instead a program where the children learn to socialize while simultaneously learning skills they can carry with them for the rest of their life. Working to create a place where the kids involved feel safe and comfortable, Abilities United provides a much-needed air of normalcy in these children’s lives. Creating a community for each child, each participant in the After School Socialization program is constantly receiving valuable tools to integrate them into society. Through this strong program kids are being given an opportunity to become a part of a community where they are valued, accepted, and given the skills to grow and thrive (Accristo). The After School Socialization Program makes a conscious effort to help each individual accomplish goals specific to their individual needs. Each child is given a list of activities they are to complete by pickup. These acti- 19

“Kids are able to come here and be-come a part of a communitiy where they are valued,accepted, and given

the skills to grow and thrive...”

- Misty AccristoManager of After School Socialization Program

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vities are specially designed for each child and can range from doing a puzzle to saying ‘hi’ to everyone at the program. Throughout the program’s history many kids have made immense progress in developing their social skills and independence. One such kid is Ryan, a seventeen-year-old, who was born with autism and Down syndrome. Ryan, once a quiet, nonverbal participant, has completely transformed into a talkative, humorous, and happy kid. Ryan now excitedly bounds from person to person at Abilities United saying ‘hi’ and even addressing them by name. I’ve personally experi-enced Ryan’s happiness and friendliness as I volunteered and filmed at Abilities United. I will always have fond memories of Ryan; us laughing over something silly I said, doing puzzles together, or even the fact that every time I saw Ryan I was greeted with a high five. Ryan’s transformation is not unusual for Abilities United, a program with specialized curriculum and a dedicated staff. As each individual attends the program, they become more and more capable of interacting with people in the program, their family, and even the community. They become more capable of making their own steps to integrate into the small groups or settings in which signify great growth. This integration can be something as small as using words to express themselves, but whatever the accomplishment, it is a step to integration in the larger community (Accristo). So what is Abilities United ultimate goal? Through Abilities United’s various programs their over arching goal is to, “…champion people with developmental and physical challenges and provide the training, education and support to lead the lives they choose.” Specifically pertaining to the After School Socialization program, Abilities United makes a conscious effort to designate specific activities and exercises 21

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that help each individual grow and excel in their own way. A parent who has experienced the success of Abilities United first hand is Pauline Navarro. Pauline Navarro has been coming to Abilities United for a little over seventeen years, when her son Ryan was born with Down syndrome and Autism. Faced with a new set of challenges, Pauline reached out for help and support. After looking at other programs she be-gan attending the Early Intervention Program with Ryan as an infant. At the Early Intervention Program, Pauline was taught how care for a baby with special needs such as Ryan’s. Becoming teary eyed, Pauline explained how Abilities United truly taught her to “enjoy her son.” When Ryan grew older, Pauline returned to Abilities United to attend their After School Socializa-tion Program. Pauline openly commends the program’s unique approach in assigning activities and goals for each child instead of the common solu-tion of simply “babysitting.” Pauline is only one parent out of the many who attend Abilities United and therefore understand its rare dedication to developing social skills in the participants rather than purely babysitting the children. Simply leaving a child with developmental disabilities to their own devices proves highly unsuccessful in causing any change. However, actions taken by Abilities United truly exemplify how a real program should run. Once again praising the program Pauline questions the millions of parents who have children with developmental disabilities, “ I don’t know why they aren’t knocking down the doors to be involved with this amazing place…” Manager of the After School Socialization Program, Misty Accristo sadly reveals the increasing rarity of programs like hers.Without programs such as Misty’s the future of integration for kids with developmental disabilities is looking more and more bleak. If there is no place to socialize children with disabilities, it is likely they will end up sitting at home with a babysitter, making no progress in developing social skills. It is this sad reality that should motivate the public to realize the importance of programs such as the After School Socialization program at Abilities United. 23

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Chapter Five

After examining the different aspects surround-ing special education and programs offered for kids with developmental disabilities, one can clearly see that there can never be a definition of normal. Normal is different for each person, therefore demanding specific treatment for each individual. Abilities United recognizes this as they individually formulate sets of goals for each child involved in their socialization program. Integration into society doesn’t mean every individ-ual will have a job, live on his or her own, and be married with kids. It instead means that they will achieve something for themselves. A success of a child with developmental dis-abilities may be as simple as a trip to Safeway, or as monu-mental as getting a job at Starbucks. No matter the accom-plishment, neither can be defined as a success or a failure. Each individual achieves successes in their own ways. This message of accepting the concept of no nor-mality is not as confusing as it may seem. This concept is the simplicity of recognizing each individual for the wonder-ful person they are and can become. It means not holding them to a lower standard than they deserve, but also not expecting them to achieve more than they are capable of at that moment in their life. Realizing everyone’s life is not designed for the same thing can help society realize each individual has an important role to play in the world. Pauline Navarro expressed this often-overlooked expression of individualism when she likened the various people in our society to a tapestry. Describing how every human being is connected and combined together to cre-ate the community we live in, Pauline strongly understands the important role each individual has to play in society.

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As the nation has become better educated on the topic of individuals with developmental disabilities the advancements in education and programs for them have increased immensely. These advancements have helped to combat the ignorance many have held or still hold against those with developmental disabilities. Although often overlooked, these individuals are talented, smart, genuine, and equals in every way. Through the education and private programs developed over time, these individuals have finally begun to receive the sup-port they deserve. Programs such as Abilities United have pio-neered a new way of thinking and treating those with disabilities. The drastic change from the early care of institutionalizing those with disabilities to the highly developed programs offered at Abili-ties United have proven the importance of providing services to those with developmental disabilities.

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Accristo, Misty. “Abilities United: After School Socialization Program.” Personal interview. 7 Mar. 2012.

“Definition: Developmentally Disabled.” Merriam-Webster. Merriam-Webster. Web. 25 Mar. 2012. <http://www.merriam-webster. com/>.

Franklin, Barry M. From “backwardness” to “at-risk”: Childhood Learning Difficulties and the Contradictions of School Reform. Al bany: State University of New York, 1994. Print.

“History.” About Us. Abilities United, 2010. Web. 31 Mar. 2012. <http://www.abilitiesunited.org/history>.

Myers, Jennifer. “Developmental Disabilities: Viewpoints of the Public.” Personal interview. 19 Mar. 2012.

Navarro, Pauline. “Parent in Program.” Personal interview. 4 Mar. 2012.

Richert, Mark. “Children With Disorders Need Special Education.” Gale Opposing Viewpoints in Context. Genetic Disorders, Sept. 2009. Web. 17 Feb. 2012.

Rusk, Karina. “Mom Shoots Autistic Son, Herself in Sunnyvale.” Online Posting. Abc7 News. ABC, 7 Mar. 2012. Web. 27 Mar. 2012. <http://abclocal.go.com/kgo/story?section=news/local/south_bay&id=8571905>.

Snell, Martha E. “Severe and Multiple Disabilities, Education of Individuals With.” Encyclopedia of Education. Ed. James W. Guthrie. 2nd ed. 2002. Gale Opposing Viewpoints in Context. Web. 16 Feb. 2012.

United States. Centers For Disease Control and Prevention. National Center on Birth Defects and Developmental Disabilities. Developmental Disabilities Increasing in U.S. Centers for Disease Control and Prevention, 14 June 2011. Web. 27 Mar. 2012. <http://www.cdc.gov/Features/dsDev_Disabilities/>.

United States. U.S. Department of Education. National Center For Education Statistics. Students With Disabilities. U.S. Government, 2011. Web. 24 Mar. 2012. <http://nces.ed.gov/fastfacts/display.asp?id=64>.

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