down syndrome life

Prenatal diagnosis of Down syndrome has been shown to lead to abortion in 84 to 91% of cases in recent U.S. studies. An estimated 70% of U.S. women choose to have prenatal screening tests.

Health care providers tend to assume that if a woman consents to prenatal screening, she is open to the option of abortion. And so it is often encouraged that she choose to avoid this “burden.”

But a Harvard study of those who chose to continue their pregnancy (mostly on the basis of conscience and religion, but also on the basis of information about Down syndrome from printed materials or from a parent of a child with Down syndrome) indicated that “most of these mothers felt that their doctors did not explain DS adequately or in a balanced fashion.”

These mothers “suggested that doctors and genetic counselors should convey consistent, accurate, and sensitive messages about life with a child with DS, and that doctors, nurses, and hospitals should provide contacts with local DS support organizations.”

But the trouble is, the March of Dimes, the National Down Syndrome Society, and the National Down Syndrome Congress all take a neutral stance on abortion. This neutral stance, in effect, implies that the abortion of unborn children diagnosed with Down syndrome is in the best interests of society, that it is justifiable.

Would it not be better if these organizations stand in defense of the inherent value to society of persons with Down syndrome?

(from “Down Syndrome And Abortion,” by Susan W. Enouen, P.E. in Life Issues Connector, January 2007)

As St. Paul writes, “On the contrary, the parts of the body which seem to be weaker are indispensable.” (1 Corinthians 12:21) This verse is often quoted on this site, for it is a truth that must be upheld, in the Church, and by extension, in all of our life.

St.JohnChrysostom

“He was expected to entertain; he did not. He cut his budget, and that of the clergy and widows, directing the funds to hospitals. . . .

Quotes: “What madness is this . . . one man defecates in a silver pot, another has not so much as a crust of bread.” He apologized for that comment a few days later. . . .

(On 1 Cor. 1:26-27)  “persons of great insignificance [are chosen] to pull down boasting.” . . .

He counsels us all: “Become . . . a self-ordained steward of the poor. Thy benevolent mind assigns thee this priesthood.” . . .

As to why brethren would be called “least” he says, “the lowly, poor, and outcast” are the sort the Lord most greatly desires to “invite to brotherhood.” (Matt. 25) . . .

St. John was severe with those who lived luxuriously at the expense of others. “I am bursting with wrath” at those who would rent out their own children for dancers and chariot races and then are stingy with the needy. “Stretch out a liberal  to the needy . . .escape the intolerable pains of hell.” . . .

Also: “Mourn heavily, that thou mayest have continual cheerfulness.” He also recommends speaking freely of one’s defects and downplaying one’s achievements. . . .

“Along with prayer goes generosity in almsgiving, which is our crowning good deed and the means of our salvation.” (citing Cornelius, Acts 10) . . .

Giving must be attended “with sincerity and much sympathy.”

“Let us not consider how to leave our children rich, but how to leave them virtuous.”

St. John advises, “. . . the best thing, that in your lifetime you give the larger half of your goods to the poor.” (in light of the poor widow and her two mites)

On the day of baptism, the wealthy, accomplished man stands side by side with the poor man and the person with a disability; he knows his bond with them, and does not look down on them, for together they are yearning to put on Christ.

“Alms may be done not only by money, but by acts [such as] kindly standing by [or lending] a helping hand” . . . but exceed material help; acquaint him with heaven, help him don the robe of righteousness, and be sure to wear your own.

“What is ‘helps?’ (1 Cor. 12:8-10) (He answers) “to support the weak . . . this too is the gift of God.”

By face-to-face involvement, one becomes “a loving and merciful soul, . . . a fountain for all his brethren’s needs.”

Learning a trade or profession is nothing compared to the art of detachment from riches. A pattern of life is needed . . . character, not cleverness; deeds, not words.

St. John recommends each home have a room set aside for a homeless or disabled person . . . by this means, the family receives Christ. . . . greater are the benefits we receive than what we confer.

“Only in toil can our minds and bodies find contentment. (Applies to giving all people useful roles, not just giving things.)

(from “St. John Chrysostom and the Socialization of Persons with Developmental Disability: Patristic Inspiration for Contemporary Application” in Resources: Orthodox Christian writings)

Russia&US

Perhaps Orthodox families in America do not turn to the Church first in a medical crisis or when a child is born with a disability; the government provides many resources, and professionals are readily accessible to deal with such issues. The Church is where we worship, give thanks, and receive our Lord Jesus Christ; the Church family is there for moral support, not for expertise in such matters.

But our approach to any problem or crisis will have a spiritual element, and the Church needs to be ready to provide its people with the proper perspective. That is what this resource page is for. Perhaps its really more for our parish priests, to aid them in their role as our shepherds in terms of the needs of persons with disability and their families among their flock.

In Russia, the government and the professional class are not so well organized and readily available, and the Moscow Patriarchate’s website gives a very good picture of how the Church fulfills its natural role of providing charity holistically when the government cannot and the people often cannot afford professional help. It’s in the resources: http://www.diaconia.ru/ (click on “English” at the bottom of the page)

We may not always be so self-sufficient here in America; in fact, the support net the government sought to provide beginning with President Lyndon Johnson’s Great Society has been eroded quite a bit. Our decaying inner cities, the homeless, the millions of uninsured people- they’re there, though we don’t hear much about them. It’s easier to concentrate on more pleasant things. This same tendency would lead us to put the needs of people, including those with disability, on the back burner. We’re called to move these things to the front burner.

A picture to ponder: http://www.diaconia.ru/images/stuff/2/38_3.jpg

invisible child

The name “invisible child” is both a descriptor of and a dedication to our children, who are invisible in the sense that their disabilities, though often severe, are hidden from view. Brain disorders, though biologically based, often are not obvious physically, so the invisible child looks like any other child. In addition, children with these disorders usually have normal intelligence. In fact, many are gifted, sometimes to a high degree, and because of this they are able to develop coping skills that further hide their differences, the result being that they may either not be identified or their struggles will be misunderstood. Because it typically takes such a long time for children to be diagnosed and receive appropriate treatment, they are particularly susceptible to falling through the cracks, dropping out of school, becoming suicidal, or entering the juvenile justice system. http://www.invisiblechild.org/About.htm . . .This is the beginning of an article by Matushka Wendy Cwiklinski, which can be found in its entirety in the Orthodox websites section. She speaks as a mother of a number of children with invisible disabilities.

http://oca.org/resource-handbook/familylife/church-and-the-child-with-invisible-disabilities

When persons with blindness, or in wheelchairs, or with Downs Syndrome features come to our Church, its easy to identify them as people to help. But its a little harder to see them as people who can help. And its much harder to see, as Matushka Wendy writes, children with invisible disabilities, who look like everybody else, as image-bearers of Christ who just need  extra patience. The article and the website are a good place to start educating one’s self toward this goal.

St.MaryofEgyptMonastery

In Cleveland, Ohio there is a monastery that explicitly follows this pattern that St. Basil the Great advocated. Not that other American Orthodox monasteries don’t practice it as opportunities present themselves; its just that this one apparently actively seeks out such opportunities. This is their website:

http://www.saintmaryofegypt.org/

St.Basil the Great

“In the fourth century … Christian philanthropy … was extended to believers and unbelievers alike.” (Byzantine Philanthropy and Social Welfare, Demetrius Constantelos, pp. 15-16)

“There was also an increased interest in the ascetic, solitary life; yet charitable work was considered integral to this life, as evidenced by the writings and acts of St. Basil the Great. …. As bishop of Caesarea St. Basil exhorted the monks to be charitable not only to one another, but to all. He even encouraged competition among them in this. The brothers were to labor, so that their institution would be able to provide for the hungry. St. Basil founded what was later named the Basileias, a hostel for travelers and a hospital for, among others, lepers. St. Basil … ‘counseled the monks who worked there to look after the patients as if they were brothers of Christ.’ St. Basil himself nursed the lepers, ‘applying ointments upon them with his own hands.'” (Constantelos, 154-55, 182)

The Desert Fathers and the monastic movement is an icon of consecration for all the Church. Every Parish is called by Christ to emulate their corporate dedication. St. Basil understood the practical implications of Orthodox theology. Jan. 1 was his feast day.

Holy St. Basil the Great, well pleasing to God, pray for us.

From “St. John Chrysostom and the Socialization of Persons with Developmental Disability: Patristic Inspiration for Contemporary Application” in RESOURCES (Orthodox Christian Writings)

our call to love

“Our call to love impels us to do all that we can in order that those around us also find their place and role in the Church, the Body of Christ, the Ark of salvation, including those one might deem ‘less honorable [and] unpresentable. . . . On the contrary, the parts of the body which are weaker are indispensable [and are given] greater honor . . . that the members may have the same care for one another'” (1 Cor. 12:22-25).

from “St. John Chrysostom and the Socialization of Persons with Developmental Disability: Patristic Inspiration for Contemporary Application”  (RESOURCES, Orthodox Christian Writings)