February 2009 Issue

The Riverbend Down Syndrome Association is a 501(c)(3) non-profit organization and can receive tax deductible contributions. Our Employer Identification Number is: 14-1982424.

Congratulations to the following State Special Olympics medalists:
Emmanuel Bishop (11) - Gold: Aquatics 400M Freestyle; Silver: Aquatics 200M Freestyle. Silver: Golf Individual Skills [11 - Independent-Bishop].
Ina Canady (24) - Bronze: Bowling Singles [12 - Specialized Living Center].
Maddie Harnar (10) - Bronze: Gymnastics Women's Balance Beam; Bronze: Gymnastics Women's Vaulting; Bronze: Gymnastics Women's Floor Exercise; Bronze: Gymnastics Women's Balance Beam; Silver: Gymnastics Women's All Around [12 - Belleville PTOEC].
Jennifer Harper (15) - Bronze: Athletics Tennis Ball Throw; Gold: Athletics 100M Run [12 - Belleville PTOEC].
Joe Kane (17) - Gold: Aquatics 100M Backstroke; Bronze: Aquatics 50M Freestyle [12 - Alton School District].
Danielle Lanxon (11) - Gold: Gymnastics Women's All Around; Gold: Gymnastics Women's Floor Exercise; Silver: Gymnastics Women's Balance Beam; Silver: Gymnastics Women's Vaulting [12 - Belleville PTOEC].
Alex Lorton (18) - Gold: Athletics 50M Run [12 - Independent-Lorton].
Casey Marko (23) Silver: Athletics Softball Throw [12 - Alton School District].
Kamali Mitchell (13) - Gold: Golf Individual Skills. Silver: Bowling Singles [12 - Region 2 - Special Ed Co-op, Highland]. Silver: Soccer Team Competition [12 - Belleville PTOEC].
Lisa Newbury (37) - Gold: Powerlifting Deadlift [12 - Region 2, Highland].
Erika Slimick (10) - Silver: Athletics Tennis Ball Throw [12 - BeDell ARC].
Mike Stroh (21) - Silver: Soccer Team Competition [12 - Belleville PTOEC].
Jordan Kyle Stumpf (26) - Silver: Aquatics 25M Backstroke [12 - Belleville PTOEC].

PUNS - The Basics from The Arc of Illinois Family to Family Health Information & Education Center. 2/8/09.
  • PUNS stands for Prioritization of Urgency of Need for Services.
  • PUNS is a list of the people in Illinois with developmental disabilities who need services.
  • PUNS is for everyone who may need help from the government to pay for developmental disability services now or in the future.
  • PUNS is the first step toward getting services in Illinois. If you are not on the PUNS list, you are not on the waiting list for services.
  • To get on PUNS, you need to set up a date to meet with a Pre-Admission Screener. These screeners will ask questions about you and your needs. These questions are part of the PUNS survey. All screeners work for Independent Service Coordination Agencies or ISC's. To get on the PUNS list, you must have a developmental disability. If you don't know if you have a developmental disability, the screener will help you.
  • To find your ISC, you can call Illinois Life Span at 1-800-588-7002. You can also call DHS at 1-888-DD-PLANS.
  • When your PUNS survey is done, you are on the list. This doesn't mean that you will get the services you need. It just means that you have made the first step.
  • Some of the services that people may need are:
    • In-Home Supports
    • Respite Care
    • Job Coaches
    • Group Homes
    • And many others
  • There is not enough money to give everyone in Illinois the services they need. Right now, many people are working on a fair way to choose who gets services.
  • Don't forget to update your PUNS form every year. Only people (families) who have completed the PUNS – and keep it updated – have a chance of getting "picked" to receive services.
  • If you have questions or need help, you can call Illinois Life Span at 1-800-588-7002.
moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/

Local Events

March 6, 2009 — 8:00 a.m. - 4:00 p.m. Teaching tools for Special Children. Susan Peoples. Maryville University Auditorium. The workshop will provide an overview of the specific learning needs characteristic of children with Down syndrome and define their academic impact. Registration: $60. For more information call the DSAGSL office at: (314) 961-2504.

March 7, 2009 — 8:30 a.m. - 4:00 p.m. Down Syndrome Association of Greater St. Louis 2009 Annual Conference. Planting the Seeds of Inspiration. Maryville University Auditorium. Keynote Speaker: Brian Skotko, M.D., M.P.P. Children's Hospital Boston and Boston Medical Center. Dr. Skotko draws upon success stories in his national award-winning book, Common Threads: Celebrating Life with Down Syndrome, to enable parents, professionals, and friends to discover the potential of all persons with chromosomal differences. For more information call the DSAGSL office at: (314) 961-2504.


Techi-Tots, Inc. is offering our parent support group a free trail computer class in Edwardsville. Their proprietary software has been recognized by the NAEYC to help special needs children with learning the concepts set forth by the National Head Start program. The target age is 3 to 9 years old. Contacts: Becky Schrage, techitots@yahoo.com and Andrea Wetzel-Darbon, awetzel2001@yahoo.com. (618) 659-4838 or (618) 401-3273. URL: http://www.imaginetomorrow.com. Information about Down syndrome and how the Imagine Tomorrow software program is helpful in working to meet the needs of these special children: At Imagine Tomorrow, every child is successful. We believe that with high expectations, it is amazing what children can achieve. Our program was designed to allow children to develop skills at their own pace and feel successful every step of the way. Our philosophy is infused into everything we do - from our videos to our custom software. We provide a class structure where every child works on their own computer and has a personal, hands-on experience. The individual attention, and customization is un-matched by any other program and the result is that the children not only gain new skills, they have fun every step of the way,

Down Syndrome Articles

Down syndrome advocates praise new law by Nancy Cambria. Sunday, Nov. 09 2008. E-mail: Nancy.Cambria@post-dispatch.com. (314) 340-8238. © 2008 St. Louis Post-Dispatch.

CHESTERFIELD — When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome.

"This was always part of the plan," said Gina Loudon as their now 3-year-old

Sammy darted in and out of the living room in his slippers, giggling loudly.

"We didn't know much about how it was going to happen, but we just knew."

The politically active couple with deep roots in the anti-abortion movement said their passion for Sammy spurred them to take legislative action on behalf of children with Down syndrome. It also put them in the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities and the type of information about Down syndrome that new or expecting parents were getting from their doctors.

Various studies estimate that 80 to 90 percent of parents who receive a prenatal diagnosis of Down syndrome through genetic testing choose to abort the fetus. Researchers believe this is the cause behind an 8 percent decline in people with Down syndrome in the United States in the past two decades.

In 2007, with similar federal legislation already in the works, John Loudon pushed through "Sammy's Law." The law requires medical professionals to provide accurate information on the outcomes of people with Down syndrome and inform mothers with a Down diagnosis of adoption resources.

The couple is now celebrating the most recent step in what they view as a mission. In October, the bipartisan Kennedy-Brownback Pre-natally and Post-natally Diagnosed Conditions Awareness Act was signed into federal law.

But some physicians and abortion-rights advocates worry that such legislation could pry open the door of privacy between doctors and patients. And they question the law's premise that parents are terminating pregnancies without full information about Down syndrome.


When the Loudon's decided to adopt, they found there were far more parents wanting children with Down than there were children with the condition.

Currently about 250 prospective adoptive parents are registered with the Down Syndrome Association of Greater Cincinnati, a national proponent of the adoption of children with Down.

The Loudon's said the waiting list gave them a wake-up call about genetic testing, and its impact on the population of people who have Down. It is also an issue that has deeply galvanized advocacy groups for the disabled. They argue that not enough positive things are being said about Down syndrome and other conditions when parents first get a prenatal or postnatal disability diagnosis in a doctor's office.

Gina Loudon said medical staff offered Sammy's biological mother little comfort or information about Down syndrome after his birth. Nor, said Loudon, was she told that there were people who would want to adopt a baby with special needs.

"When she finally heard there were people wanting to adopt him, she said she was shocked. She said, 'You mean there are people who want these babies?'" Loudon said.

The Kennedy-Brownback Act is designed to establish databases of information and registries to give parents better access to support, adoption resources and accurate information about Down syndrome and other genetic conditions such as spina bifida, cystic fibrosis and dwarfism, both before and after birth.

The law was co-sponsored by Sens. Sam Brownback, an anti-abortion proponent from Kansas, and Edward Kennedy of Massachusetts, a Democrat who supports abortion rights.

Republican Sen. John McCain of Arizona joined on as a co-sponsor in September after selecting Sarah Palin as his vice presidential running mate. Palin's youngest son, Trig, was born last spring with the condition.

Advocates for the disabled say the need for the law transcends ideological lines.

"I just think what we have to do here is not about pro-life or pro-choice, it's about pro-information," said Linda Orso, executive director of the Down Syndrome Association of Greater St. Louis. "We have to get accurate information to the medical community so that the parents can make an informed decision."

But some physicians worry that such laws could lead to mandates about what's said between a doctor and a patient, threatening to erode patient trust.

Diana Gray, a professor of obstetrics and gynecology at Washington University Medical School specializing in genetics, said she strove to give accurate, unbiased information that does not direct a patient either way on whether to terminate a pregnancy. She said she often talked with patients over several days to answer their questions, talk about lifelong outcomes for their children and provide links to support groups during a very emotional time.

But providing information about adoption when it's not asked for might appear biased and judgmental to a patient, she said. It also doesn't take into account the likelihood that a baby with Down may be hard to adopt because of the higher probabilities the child may have major heart defects and other serious medical problems, she said.

"We don't have any good data to show how many of these children are adoptable," Gray said. "I think that's a cruel option to hold out to someone."


Down syndrome is caused by an extra copy of Chromosome 21, causing varying levels of disabilities, including decreased intelligence, slackened muscle tone, gastrointestinal problems and heart defects.

In the past 25 years, however, the average life expectancy for a person with the condition has more than doubled to 56 years, according to the National Down Syndrome Society. Those with the condition also have better access to early intervention programs and inclusion in regular public school classrooms.

Support organizations and disability networks have also fostered increased independence.

Orso, who has a 30-year-old daughter with the condition, said parents of children with Down have just as many accomplishments to celebrate as parents of children without the condition: high school graduations, first apartments, full-time jobs and even marriages.

Proponents of the federal law mobilized after two landmark 2005 studies penned by Harvard medical student Brian Skotko, who has an adult sister with Down syndrome. Skotko surveyed 3,000 parents of children with the disorder about how the diagnosis was delivered. In most cases, the news began with the cryptic words, "I'm sorry," and got worse from there, said Skotko, who is now a physician with Children's Hospital of Boston.

"The majority of the parents said that the information they got from their physicians was inaccurate, incomplete and sometimes insensitive," Skotko said.

"It was in no way consistent with the advancements and possibilities and support that we've seen."

Orso said it was something parents of Down children had known anecdotally for years. She said some physicians told parents their children wouldn't be able to count change, go to regular school or live on their own.

One parent dealt with a physician who repeatedly phoned to remind her that the legal deadline was nearing for an abortion. And some doctors are now asking women who have a prenatal diagnosis to sign a legal form stating that she has decided not to terminate the pregnancy.

"I know the doctor thinks he or she is doing the right thing," said Orso. "But they're often not giving them a fair, honest chance to make an informed decision."

John Loudon said he was inspired to introduce legislation in Missouri by St. Louis pediatrician Jan Mueller, who told him about the American Academy of Obstetrics and Gynecology's revised recommendation that all pregnant women be screened for the condition.

Previously the Academy had recommended screening for women 35 and older, because women have increasing chances of conceiving a child with the condition as they age. Mueller, who will soon begin talking with area physicians about Down through a program sponsored by the St. Louis Down Syndrome Association, said expanding the scope of the screening without improving how physicians deliver a positive diagnosis was reckless.

"If you're not doing it well with the ones that you are already testing, why in the world we want to expand that ineptitude?" she said.


The Loudon's said they were certain they wanted to adopt a child with Down even before they were married. The couple, who worked with the disabled in high school and college, understood early on in their courtship that people with the condition have a certain grace, and can bring great peace to those who help care for them. The couple say Sammy does just that for them and their three other children, including their youngest, Bo, who is six months younger than Sammy.

"See," says Gina Loudon, pointing to Sammy as he does a somersault on the carpet and his little brother tries to follow. "It's like he's the typical functioning brother. Sammy's always in the lead."

Gina said she hoped Sammy would one day graduate from high school, get a full-time job, live on his own and perhaps even marry.

But for now, the family's just focusing on living in "the now."

"He teaches us so much about every day," she said. "That you can be happy despite your circumstances."

Power and Powerlessness in Pentecostal Theology1. A Review Essay on Amos Yong's Theology and Down Syndrome: Reimagining Disability in Late Modernity (Waco: Baylor University Press, 2007) by Jeff Hittenberger and Martin William Mittelstadt. Pneuma, Volume 30, Number 1, 2008 , pp. 137-145(9). Reprinted with the permission of the publisher, Frank Macchia and the respective permission of the authors.

Hittenberger: When our son Ben was diagnosed with Down syndrome, we asked God, "What does this mean?" My wife Christine sensed that God was providing this response to our prayer: "In Ben, you will get to see the meaning of the Kingdom of God every day." This has, in fact, been our experience, as this example will illustrate. On Ben's first day at a new middle school, we stood together and watched his new classmates exit a special education bus. We heard a girl screaming in anguish. An aide and the driver tried to coax her off the bus. She refused to budge. One of the aides finally carried her off and set her down on the sidewalk, while she continued to scream. She seemed terrified and angry. Ben watched her, but didn't change his expression. Then the girl seemed to catch a glimpse of Ben from the corner of her eye and there was a flash of recognition. Her screaming stopped and she stood up. She walked over to where we were standing and stood in front of Ben, looking into his eyes. Ben reached out his arms and put them around her shoulders, gave her a big hug, and held her for about ten seconds. She stopped crying. I remembered then that they had been classmates a couple of years earlier. Ben and Elizabeth gathered with their classmates and headed off to middle school. As I walked to my car I thanked God. Ben was here to do his mission. In his powerlessness, God's power was being displayed. I came to this book hoping to find a theology that would give voice to our experience. Mittelstadt: I grew up in the Pentecostal tradition. Today, I claim Pentecostalism as my tradition of choice in spite of periodic seasons of disappointment and disillusionment. I remain at "home" due in part to my consistent approach to theology as autobiographical: many of my academic aspirations serve to bring meaning and application to my experience. For example, as a response to my struggle with one-sided triumphalism so often dominant within our tradition, I wrote my dissertation on the role of the Spirit in contexts of suffering and persecution in Luke-Acts.2 While my analysis of persecution primarily offered theological solace, my ongoing encounter with Pentecostal triumphalism conflicted with a different kind of suffering closer to home. On a personal level, I recall my ongoing interaction with various family members and friends with a wide range of disabilities. I wondered why they are not healed. I pondered the possibilities of their encounter with God. At times, I questioned their value to a family, the church and society. Unfortunately, my participation within Pentecostal churches provided no forum for discussion and, to my own disappointment, I generally refused to initiate dialogue except for the occasional private conversation. But this is changing. As I have recently been diagnosed with epilepsy, I find myself wrestling with personal identity. I remember well my teenage years, when my friends and I would mock peers with seizures (and any kind of physical or intellectual disabilities). Today, while I live among loving and supporting family and friends, I also resonate more with those who are marginalized through no fault of their own.

Like Yong, our interest in disability reflects our own journeys. Yong wrestles not only with personal questions but also provides possibilities for meaningful theological understanding and response.

I. Synopsis

Amos Yong's Theology and Down Syndrome is a deeply personal book, motivated in large part by his desire to make sense of his brother Mark's experience with Down syndrome. Short vignettes about Mark and his family begin each chapter. What follows each of these vignettes is truly groundbreaking theological reflection on the meaning of Down syndrome for Christian theology. While many books have been written about disability from the standpoint of Christian belief and experience, few have attempted to address disability, and especially intellectual disability, "within its wider ecclesial, social, political, economic, cosmic, and finally, theological contexts" (293).3

This book is especially timely given both the exponential growth in incidence of diagnosed disabilities, as well as the chilling trend toward termination of pregnancies when children are diagnosed in utero. An estimated 350,000 Americans and perhaps 5 million people worldwide have Down Syndrome (61), a genetic condition that occurs when a third chromosome is linked to the twenty-first pair (hence the name "trisomy 21"). Of parents who receive early diagnosis of Down syndrome, between 70 and 90 percent choose to abort (64).

Christian theology has largely failed people with disabilities. In Part I of the book, Yong provides a survey of biblical and historical theological perspectives. Among his disturbing findings is that, while many theologians are silent on the issue of disabilities, some have asserted that people with intellectual disabilities do not have souls. Given that the imago dei is often associated with rationality, and salvation with theological affirmations, anyone not able to demonstrate rationality or articulate theological beliefs would inevitably be lost. The results of this failure of theology have been devastating for people with disabilities, who have often found the church to be as inhospitable as the world.

Yong argues that, repenting of our past failures, "Christian theological reflection and praxis in the twenty-first century can be invigorated and renewed when the scriptural and dogmatic traditions of the church... are retrieved and reinterpreted in close dialogue with disability perspectives"(152). This reinvigoration can be accomplished by means of the "pneumatological imagination," or a means of knowing "shaped in part by the Biblical narratives of the Holy Spirit and in part by the Christian experience of the Spirit" (11). "An approach to theological reflection informed and shaped by the Christian experience of the Holy Spirit," Yong writes, "not only opens up space for the possibility of dialogue with experiences of disability but also, arguably, requires such a conversation for Christian theology to maintain its credibility and plausibility in the twenty-first century" (10-11). We will suggest below some specific implications for Pentecostals of Yong's theological reflections.

In Part II, Yong engages with and summarizes the literatures of multiple disciplines and perspectives on disability issues: medicine, feminism, disability studies, law, economics, and world religions, to name a few. The reference list alone is over 90 pages long, a rich resource for anyone interested in this area of study. Yong finds that the challenge to scientific "objectivity" characterizing what he calls "late modernity" (or postmodernity) has opened the possibility of reinterpreting disability in positive and embracing terms, rather than in the medicalized language of modernism that made all people with disabilities "abnormal" and, ultimately, a burden on society. Disability advocates are suggesting possibilities like an "aesthetic of difference" that redefines beauty in inclusive terms, challenging convergent standards of beauty against which people with disabilities are usually measured and found wanting.

In Part III, Yong builds on what he has discovered in the multiple disciplines to suggest themes for a renewed theology that fully embraces disability. For example, the "aesthetic of difference" resonates with a richer understanding of the imago dei, which understands that all people are made in God's image and are the focus of God's unconditional love and divine delight. God's eternal beauty, goodness, wisdom, and love are of such surpassing wonder as to render utterly insignificant any differences among humans to which we might point in order to assert our superiority. Moreover, theologians like Stanley Hauerwas point to Jesus on the cross as the embodiment of disability, utter vulnerability, and complete powerlessness: "the disabled God." Given that God's love was revealed on the cross in this most vulnerable form, it could well be that in our world and in our lives, God continues to manifest divine love most profoundly through those who are least able to articulate it. In fact, people with Down syndrome and other intellectual disabilities often have rich spiritual lives and provide spiritual nurture to those who know them.

Yong includes chapters on the doctrines of creation, providence, and the imago dei, on ecclesiology, soteriology, and eschatology. Each of these chapters offers insights derived from disability that promise to renew Christian thinking and inspire a deeper appreciation for the wonders of God. Yong raises questions with profound significance for praxis, like how to provide people with profound mental retardation the opportunity for baptism and initiation into the Body of Christ, and how to better liberate the intellectually disabled for ministry in the church. "How is it possible for them to be ministers of God's saving and revelatory grace to a hurting world? I suggest that it is especially the severely and profoundly disabled, in part because of their not resisting the Spirit, who are most able to be iconic charisms of God's presence and activity in the world" (p. 218).

Particularly inspiring is Yong's depiction of the eschatological hope applied to people with disabilities. We have traditionally pictured heaven as a place where all disabilities will be eliminated, where the disabled will be just like us. But are we missing something? "Will I be retarded in heaven?" Yong quotes an anonymous girl's question to her parents. The parents reassured her that she would be perfect in heaven. "Then how will you know me?" she asked (259). Could it be that Mark and Ben and others with Down syndrome have received from God a gift that is meant to have significance beyond the present life? Could it be that heaven will not make them more like us, but will make all of us (whatever our disability) more like Christ? "Is it possible to conceive that the glory and power of the resurrection body will derive not from some able-bodied ideal of perfection but from its being the site of the gracious activity of God's Spirit? In this case, might not the unending journey of the resurrection body also be from glory to glory and from perfection to perfection?" (282).

II. Pentecostal Implications

While Yong calls the church universal to an enlarged understanding of the intersection of theology and disability, our purpose is to suggest specific implications for the Pentecostal tradition.4 Yong interrogates two core distinctives within Pentecostalism: divine healing and the universal availability of the Holy Spirit for a charismatic community. However, Yong consistently supplements his theological interrogations with passionate pastoral appeals.

Yong affirms the Pentecostal pursuit of healing. From the beginning of the movement in the early twentieth century, Pentecostals have attested to innumerable accounts of God's intervention through physical healing. At the same time, Yong recognizes that disappointing and dubious practices litter the movement. He not only laments but challenges healing practices that leave the disabled (as well as families and friends) disappointed and disillusioned when healing fails (242-247). Pentecostals often susceptible to an over-realized eschatology tend to view physical healing as the greatest goal ahead of the need to be loved.5 God's love, expressed through God's people, brings about a holistic kind of healing that enables a person to realize their human wholeness, even when a physical cure does not follow. Yong's affirmation of an aesthetic of difference and his affirmation of healing as attainable even in the absence of a cure suggests that an overzealous pursuit of healing can become a form of idolatry.

He counters with an invitation for an enlarged theology of healing. While healing may include cures, agents of healing must include intentional invitation to the stranger through love and inclusion. Such activity solicits a thorough reexamination of contemporary understandings of the gift of hospitality (Gen 18; Heb 13:2a; Luke 14:15-24). Through extension of hospitality to those with disabilities, the church not only offers hospitality but also receives hospitality (224). A hospitable church experiences an inexpressibly relational healing reminiscent of the inclusivity modeled on the day of Pentecost.6

Pentecostals also proclaim the universal availability of Spirit-empowerment (Acts 1:8). Pentecostals view the church as a charismatic community emphasizing the mutuality of body ministry (I Cor 12-14). Unfortunately, Pentecostal ministry often focuses on the strong and sensational body parts to the neglect of the weak and necessary sustaining parts of the body (1 Cor: 12:22-24). Paul, well acquainted with fragility, not only heeds Jesus' words that "power is made perfect in weakness" (2 Cor 12:9) but also challenges Corinthian arrogance by placing the foolishness of God against their human wisdom and the weakness of God to shame their human strength (1 Cor 1:20-2:4). Yong also cites the inauguration of Jesus' ministry at Nazareth. Jesus reads from Isaiah and declares his own ministry to the poor, the weak and the oppressed (Luke 4:18-19). The cumulative effect of these biblical texts points to the participation of the marginalized in the kingdom of God (204-5; 217-8). Since Pentecostals proclaim the paradigmatic nature of Jesus' life and desire to recapture the primitive purity and power of the first century church, our imitation of Jesus and our inclusive ecclesiology must not only make room, but also supply ministerial opportunities for people with disabilities.7 Yong provides numerous examples of the disabled as able ministers.

On a personal level, he narrates the occasion of Mark's baptism in the Spirit through the agency of his mother. While Yong's mother struggles with embarrassment about Mark's behavior, an onlooker expresses an opposite response: "She wished that she was as free as Mark to worship God" (228). When asked what he prays for, Mark declares: "for people to get healed," for "salvation," and for "one nation under God with liberty and justice for all" (194-5).

At an ecclesial/community level, Yong offers the egalitarian and democratic L'arche, a worldwide fellowship of communities serving the disabled, as an example of a Christian community that embraces weakness over and against "convenience, comfort, consumption, and efficiency" (201). Everyday activities such as rising, dressing, eating, chores, helping, sleeping, praying and dreaming are not only ordinary and mundane, but occasions for the miraculous. Yong recounts these stories among many to demonstrate contributions offered by the disabled when given the opportunity.

III. A Call to Action

Yong follows his regular theological reflections with a consistent call for action. Among the multitude of possible responses for Pentecostals, we suggest the following: 1) a reversal of prejudicial practices that run contrary to Pentecostal inclusivity; 2) inclusion of, and creative interdisciplinary research for and with, people with disabilities in our educational institutions; 3) a prophetic model that calls not only for the maintenance of the disabled but the marshalling of all the resources of the church for their flourishing.

Yong objects to prejudicial and exploitative practices and not just those that afflict people with disabilities. Yong interrogates inappropriate use of the term "normal" as an ideal and a positive expression against the "grotesque" (86). Contemporary culture is plagued by media images of unattainable physical perfection. The disabled are part of a larger marginalized community that includes all those with imperfect bodies who do not meet the cultural standard of slimness and eternal youth. To the embarrassment of the church, Yong places the adoption of ableism alongside racism, classism, and sexism as an oppressive sin in need of intentional repentance. Pentecostals regularly refer to the events of Acts 2 as a breaking of ethnic, racial and gender barriers. By implication, Yong calls for an enlarged Pentecostal inclusivity through the breaking of a new barrier, namely intentional and authentic hospitality to the disabled.

The steady emergence of the liberal arts in the Pentecostal tradition leads to a second call. Pentecostal institutions need to explore creative possibilities to reflect this inclusivity via pneumatological imagination. Educators in the Arts and Humanities need to explore and promote a new Pentecost by interrogating views that stigmatize, marginalize, and oppress on account of bodily or intellectual differences. Courses in film, literature, theatre and arts could encourage students to counter demeaning presentations of the disabled against the backdrop of ableism (89-90). Interdisciplinary disability studies should draw on philosophy, women's studies, politics, geography, and economics in order to declare a new Pentecost that seeks to integrate the disabled. Proponents of an integrated Pentecostal worldview need to challenge the social marginalization of people with disabilities, unravel ableist or normative notions of uniformity and pave the way for diversity and inclusion (100). Pentecostal institutions must also find ways to creatively include people with disabilities in their student bodies, their staffs and faculty, so as to demonstrate this inclusivity. This will allow for greater engagement in research with and on behalf of people with disabilities so as to penetrate policies and ideologies of our larger societies.

Finally, Yong seeks prophetic marketplace Christians. Yong longs for believers who strive to bring the eschatological age into the present through the transformation of disability approaches from primarily economics-driven maintenance to new resourcing intent on human flourishing. He envisages action that includes further education on alcohol consumption and cigarette smoking during pregnancy, the use of seat belts and helmets to protect against head injuries that cause retardation as well as lobbying for the reduction of lead in paints and in gasoline. He laments the limited availability of vaccines for measles, smallpox, polio, and other diseases that can cause retardation. Yong challenges oppressive answers to Down syndrome such as selective abortion and calls for stronger focus upon early intervention, educational programs, and environmental modification (66). Yong decries the lucrative market of therapeutic interventions and behavior modification as a microcosm of an overarching capitalist order, when the profit motive is unchecked by fundamental moral values that put people first. While Yong does not deny the need for ongoing research into medical and psychological intervention, he calls upon the church to balance preventive and maintenance-based responses with religious resources that encourage community and foster human flourishing. In this way, the church may initiate a prophetic model of liberation to the poor and oppressed by counteracting the well-oiled psychiatric machine (254-5).

IV. Evaluation

Since this text is vintage Yong, it requires careful reading. Yong utilizes not only exegetical, historical, and theological insights but also interdisciplinary breadth that may be challenging for some readers. His integration of theology with the social and behavioral sciences, medicine and health care in light of current political perspectives makes this a pioneering work. He courageously interrogates the status quo within various disciplines, but he is no cynic. Yong offers concrete responses not only for the church but also the broader community. Yong speaks boldly from within his Pentecostal tradition, but this work is in no way limited to Pentecostal readers. Finally, Yong grapples with his own family story; he writes as Amos, a brother to Mark. This work should serve as an excellent resource for upper division undergraduate as well as graduate courses ranging from theology to the social and behavioral sciences, health care industry, education, and the humanities.

1Our reference to the Pentecostal tradition implies the broadest sense of the term from the early twentieth century revivals through to the charismatic renewal of the late twentieth century.

2See Mittelstadt, The Spirit and Suffering in Luke-Acts: Implications for a Pentecostal Pneumatology (JPT Sup, 26; London: T & T Clark, 2004).

3We would especially recommend Henri Nouwen's Adam: God's Beloved (New York: Orbis, 1997) and Jean Vanier's From Brokenness to Community (New Jersey: Paulist Press, 1992).

4At the same time, we do not want to suggest that the ensuing implications are irrelevant for the larger Christian tradition. We want to focus upon issues that relate directly to Pentecostal theology and praxis.

5For an excellent critique of overzealous pursuit of healing see Gordon Fee's The Disease of the Health and Wealth Gospels (Vancouver: Regent Publishing, 1985).

6We recommend Brendan Byrne The Hospitality of God: A Reading of Luke's Gospel (Collegeville: Liturgical Press, 2000).

7See Grant Wacker, Heaven Below: Early Pentecostals and American Culture (Cambridge: Harvard University Press, 2001) 11-12.

Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation. Book Review by Michelle Harmon. E-mail: mome23kjnc@roadrunner.com. Copyright © 2008 Michelle Harmon. All rights reserved. Reprinted with the permission of the author.

Dr. James MacDonald has worked tirelessly for many years teaching parents to be their children's most effective communication partners and has trained over 1500 therapists and teachers to work with language delayed children. "Dr. Jim" was a professor of Speech and Language pathology and Developmental disabilities at the Ohio State University from 1971 -1995. He directed the Parent Child Communication Clinic at the Nisonger Center during those years. In 1995, he took early retirement to devote his time to building parent-based programs and to direct the Communicating Partners Center.

Communicating Partners (CP) has provided information and hope to families and the children they love for many years. With the release of his latest book Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation (Perfect Paperback), Dr. Jim has brought his strategies and practical ideas to life in an easy-to-read, practical guide format.

The book uses real-life stories and lots of photographs to teach the methods he espouses, and that have worked so well for the families he has devoted his life to helping.

The book is both a Home Coaching Model, rife with day to day suggestions and ideas to make communication with children playful and interactive, and a Professional Model, a clinically-proven model for Speech and Language therapy that has been tested for over 30 years.

CP meets the needs of parents and professionals alike, because it is child-focused and responsive to the child's strengths and innate abilities. Rather than focusing on a lack of speech, the program reminds its users to focus on what the child can do, and to meet them at their level through play and gentle interaction. This approach allows "Speech Therapy" to occur even with the youngest of infants, as it builds on sounds and behaviors all children make, with turn-taking, imitation, and humor.

All children have stages of Communicative Development, but without practice and a clear understanding of the role a partner in that communication plays, they can get "stuck" at certain intervals and stop trying to communicate. What adults can do to create communicative children is:

  1. Increase the child's social interactions by using any behaviors the child can already do.
  2. Help the child learn social play, turn-taking, imitating and vocalizing. As these skills grow, CP urges more intentional, focused communication, with an early emphasis on non-verbal communication prior to words. With the groundwork laid, a Communicating Partner moves on to
  3. Help the child use language for a variety of reasons, especially social reasons.
  4. Refine conversations skills.
  5. Help the child learn how to be social and communicative in civil, empathetic and socially productive ways.

The second chapter of this amazing book deals with the real reasons why CP is so effective. It clearly shows the different ways children and adults see their world, and how to bridge the gap between them by teaching the adult how to enter the child's world. Children live mainly in a world of sensation and action. Adults live mainly in a world of thought and language. "When adults only talk with children they often miss the child's world of experiences and fail to connect. The more connections you share, the more development happens." Those connections are generally through play and imitation, rather than through words. The book gives terrific ideas of how exactly to enter a child's world and how to be balanced, responsive, playful and affirming.

One of the key differences in the CP method versus that of other Speech Therapy methods is Balance. Rather than see the adult as the provider and the child as the consumer, the program addresses the need for "balanced communication".

Understanding Balance "In many years of research and clinical practice, we have found that a majority of interactions with children with developmental delays are out of balance. Partners often dominate the child with talk and action, often unwittingly forcing the child into a passive role. He listens and watches more than he communicates or acts. ....Balance is a strategy that parents can use to help the child play a more active role in interactions. When partners learn to allow the child time to do or say what he can, they often discover that he can do much more than they realized."

Another vital point CP makes is that an adult must be responsive to the needs of the child. "A common concern with children is that they often make more sounds when they are alone than when they are with people. They seem to not have learned that sounds can be powerful ways to communicate. When parents begin responding to a child's sounds, even unclear ones or just playful ones, the child learns that sounds are for communicating: a critical step toward talking. Your child can begin to communicate with absolutely any physical or vocal behavior that you respond to regularly. If you sensitively respond to a behavior as if it were a meaningful communication, it will become a meaningful communication over time."

Play to Talk teaches the important skill of matching. "Matching is about being 'developmentally possible' for your child. Matching involves doing actions your child can do and using sounds and words you child can say. To help your child learn new actions, sounds and words, try 'progressive matching'— do what he is doing or make sounds like the ones he is making then show a next possible step. Add another step or a new idea to an action sequence. Expand language in small steps by translating sounds into words or by expanding a one-word statement into two words. Add to whatever your child is currently doing in order to help him take a next step."

With the methods explained in language that makes perfect sense, the book moves on to creating a practice plan. The chapter provides step-by-step guidance for creating a practice plan, a straightforward, written plan of action that details how and when partners will practice the responsive strategies with a child. The chapter helps a parent evaluate where a child currently is and what the immediate and long-term goals will be. It evaluates the parent, the child, even the environment, with questions meant to really delve into a plan of action. Examples of plans are given, and Dr. Jim gives advice on how to record progress.

Chapter 4 explores the nitty gritty, how to create activities and possibilities to practice the CP methods you have learned about. It explains People Play, and the necessity of teaching a child to enjoy playing with people rather than objects early on. It uses the obvious infancy games of peek-a-boo, tickling, etc to learn turn-taking and interaction with people for fun. But CP reminds its users that the games are done with the intention of fostering communication and give-and-take that is so vital to speech later on.

In Chapter 5, clear examples of how to make CP work in daily life are given, as well as insights into things that can affect communication negatively, such as sensory issues and behaviors. CP focuses on natural partner responses as the primary reward or reinforcer. The key to natural reinforcement is to continue to do socially whatever keeps the child interacting in desirable ways. Dr. Jim offers insight into possible causes of problem behaviors, and really explains why a depressed, bored, or over-stimulated child will act out. He gives great suggestions for reconnecting with the child and returning to a good balanced relationship.

The book goes on to discuss daily activities that promote communication and speech, and how learning to be a communicator has profound effects on the entire life of the child and the family.

As a long-time user of CP and a mother of a child with Down syndrome, I can personally attest to the methods and theories Dr. Jim espouses. When my daughter was 2 years old, I found his program. From that day forward, I began to change how I interacted with her, and learned to be a much better communicating partner for her so she could be one for me, and she has blossomed into a child who is quite capable of holding her own in a conversation. I especially like that Dr. Jim recognizes the power of parents in their children's lives, it is a position far more powerful and capable than that of any speech and language professional. His methods of mutual respect, humor, and kindness really work. I like to say that what we are looking for is not really "Speech", it is communication, and there really is a difference. Communicating Partners gets that, and this new book brings real life context to the ideas, and makes them easy to understand and pursue. I would recommend this book, and Communicating Partners in general to any parent of a child with Down syndrome, from infancy to adulthood, who worries that their child will not be able to communicate their wants and needs to them. Not all children will have a full language, but with Dr. Jim's suggestions, virtually all of them will be able to communicate their wants and needs well and to be able to feel heard by the people who love them. I highly recommend this book.

Web Wanderings

Take Down syndrome out of the abortion debate by Renate Lindeman, Spokesperson, Down Syndrome Belongs, Dartmouth, NS. CMAJ, November 4, 2008, 179(10): 1088. © 2008 Canadian Medical Association. URL: http://www.cmaj.ca/cgi/reprint/179/10/1088.pdf.

Father's Journal


Avoid women clothed in leopard print; they are vexations to the spirit.
If a woman of a certain age asks her age, always answer 29; you will have gained an advocate for life.
Do not distress yourself with painted-on eyebrows on foreheads; it is still a beautiful world: you have a right to be here.

Trig Palin, the 5-month-old son of vice presidential candidate Sarah Palin, has drawn enormous public notice to Down syndrome. For that, many in the US and Canadian Down syndrome communities are grateful.

But as the mother of 2 children with Down syndrome, it makes me very nervous. I'm not willing to see my kids used as poster children for the anti-abortion movement. Rather, I see the attention that Sarah and Trig Palin are bringing Down syndrome as an opportunity to take the issue of prenatal screening out of the abortion debate once and for all. [...]

We want complete information to be available prior to the offer of screening. Some hospitals don't make any information publicly available, while others offer only a summary of medical problems that may, or may not, occur. [...]

At the end of the day, when I look at my daughters, April and Hazel, both living with Down syndrome, I don't see the genetically flawed children that prenatal screening is trying to eliminate. I see kind-hearted, happy children who are giants in loving and living, who enrich our human genetic diversity and who teach me and everyone they meet what it is to truly feel.