November 1997 Issue

On November 19th, 1997 I attended a presentation by Thomas J. Reilly, founder of the Dignity Group, a Chicago not-for-profit organization dedicated in helping families with entitlement programs, proper preparation of wills, trust documents, guardianships, power of attorney and life care plans. For further information contact:
The Dignity Group
1163 East Ogden Avenue, Suite 705-354
Naperville, IL 60563
(630) 681-1119

Available for loan is Developing Language and Reading Skills by Love and Learning. The tape shows Maria, reading at 5 years of age. Maria, who has Down syndrome, is the daughter of Joe and Susan Kotlinski, developers of this innovative technique. Contact Victor or Gloria Bishop at (618) 208-1659 to borrow the tape. Love and Learning may be reached at:

P.O. Box 4088
Dearborn, MI 48126-4088

We received an informational package from the Adult Down Syndrome Center, Advocate Health System. We have relayed this information to the parents of adult Down syndrome children in our support group.

Adult Down Syndrome Center, AMG
1255 North Milwaukee Avenue
Glenview, IL 60025
(847) 318-2878
Fax: (847) 318-2777
News Clippings
Event's Success Enlightens Sister by Julee Greenberg - features editor "The Bona Venture", the newspaper for St. Bonaventure, New York.
Last Sunday was a unique day in many ways. It not only opened my mind to the challenges of the disabled, but it made me see what someone close to me is really capable of. That person is my sister.
For the past year, I have seen my sister struggle to put together the first annual Buffalo Buddy Walk, which took place in Buffalo's Delaware Park to raise money and awareness for the National Down Syndrome Society. I never truly understood why she was doing it.
She was constantly on the Internet, chatting with parents of children with Down syndrome and she even traveled eight hours one summer to help a family take care of their child for 3 months. She had T-shirts printed to sell at the walk and solicited corporations asking them to give what they could.
Why would she do this? She was in high school; she should have been doing things like shopping and going out with friends, right? She was definitely weird. After seeing that many smiling faces of the children with their families at the park on Sunday, I think I finally understand.
Although these children might look a little different from you or me, they are still remarkable human beings. They are so warm and loving and some of them know things at the age of two that I still do not know at the age of 20. One two-year-old boy communicated with his mother using sign language since it was hard to understand him when he talked.
My sister, although only 17 years old, has the kindest heart and soul of anyone I have ever known. Her love and compassion for these special children is so deep. She knows more about Down syndrome than many doctors do and it all began with one tiny infant.
A few years ago, my next door neighbor gave birth to a baby girl with Down syndrome. The baby, who was born with a hole in her heart, died at eight months old. My sister never missed more than three days of her life. Ever since then, she has dedicated about 90 percent of her time to Down syndrome awareness.
She worked extremely hard to put this walk together and to be honest, I really didn't see her pulling it off. I was also afraid that she was going to be heart-broken if no one showed up at the walk. Well, she proved me wrong. She raised over $1800 and more than 200 people showed up to walk.
For those who believe they cannot learn anything from our younger siblings, think again. Sure, my sister is not like me in many aspects, but I learned from her that one single person can bring a smile to a group of faces who need it most.

New Test for Down Syndrome by Sally Jones. American Baby, October 1997, p. 14.
Researchers in the Reproductive Genetics Lab at Montefiore Medical Center in Bronx, New York, have discovered a fourth genetic marker for Down syndrome that will increase the accuracy rate of prenatal screening tests to 88 percent. Current tests, which look for three genetic markers in a pregnant woman's blood serum, have a detection rate of about 60 percent. Tests with the new marker, called inhibin, are available through your health-care provider.
The same researchers are also working on a urine test that could eliminate the need for more-invasive testing procedures. The urinalysis - now in clinical trials - is expected to have a detection rate of more than 60 percent; combined with the second marker, the detection rate would increase to over 80 percent. Researchers hope the test will be useful for neural-tube defects as well, so that fewer expectant moms will have to undergo amniocentesis or chorionic villnus sampling (CVS) - prenatal tests that cause discomfort in some women, carry a slight risk for miscarriage, and pose a very small risk for fetal deformities.

Child and Family Connections (CAP/SPOE)
Child and Family Connections is the central point for Madison, Monroe, Randolph and St. Clair Counties. It is responsible for ensuring that all referrals of children, under the age of three, to the Early Intervention system in Illinois, receive a timely response. It is also responsible for insuring that the various functions are conducted with families in a prompt, professional, and family-centered manner. There are twenty-four Child and Family Connections in Illinois. For more information contact:

Child and Family Connections
1306 Wabash
Belleville, IL 62220
1 (888) 594-8364 or (618) 257-8909
Fax: (618) 257-9106

Down Syndrome Newsletters Articles
Thoughts From the Middle of the Night by Pam Wilson
Reprinted from Northwest Baby & Child, c/o BDS, 400 North 36th St, Seattle WA 98103, May, 1991, with permission of the author.

When my son Evan was born and I was told he had Down Syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.
Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.
I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.
I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend.
Evan will be six years old in a month. His sister Zoe is seven and a half. When they are not arguing ferociously or ignoring one another, as siblings do, they are the best of friends. They help one another scheme, and protect each other from harm. Both have argued seriously how life for the whole family would be better if the other disappeared, leaving an "only child." Each misses the other when they are separated overnight. I rarely think about the sister and brother walking toward the nursery viewing window, but sometimes when I see my two walking hand in hand down the beach or up a hiking trail, I think of the poor, sad woman I was that day.
I can't imagine life without my son. Sometimes when he barrels into my bedroom early Saturday morning to tell me a great cartoon is on, I wonder what life would be like without little boys. But I get up, and find he has quite good taste in cartoons. I think of him in his preschool days, chin raised in pride over some fabulous work of art, like the turkey he pasted up when he was three. I remember him seeing his good buddy from class, Terrell, at a school carnival, and how their eyes met. They squealed in unison and ran to one another like sweethearts in a perfume commercial. I enjoy the story his teacher relayed to me about how, during a cookie-baking class, he slyly nibbled his chocolate chips instead of saving them for the cookie. I am glad every day to have this son. The world is a better place with him in it.
Evan is not a Down Syndrome "superstar," but I wanted him to have the experience of a regular kindergarten. He loves school and has a wonderful teacher. His classmates are charming and funny and bright. But I was afraid of their parents. Evan has missed some fine opportunities because many people are as inexperienced and uninformed as I was six years ago. I believe Evan needs an edge before he can participate successfully in mainstream activities, and that edge is casual acceptance.
Last night was parent night at my son's kindergarten class. I was overwhelmed by the relaxed but purposeful way different parents let me know that they accept my son simply as a child in the kindergarten class. Their hands reach back to comfort the heartbroken woman in the hospital corridor. They comfort her in ways that I cannot. I thank every person who has brought us all this far. Thank you so much.

Web Wanderings
AOL News writes: DNA Test Provides Results Within 24-Hrs for Medically Urgent Situations
Baltimore, Oct. 28 PRNewswire -- Vysis, Inc. today announced that the U.S. Food and Drug Administration (FDA) has cleared for marketing the first prenatal genetic test for Down syndrome and other chromosomal disorders associated with mental retardation and birth defects. Available for clinical use, the new test-the AneuVysion™ Assay allows cytogeneticists to detect genetic anomalies that account for 85 percent to 90 percent of the chromosomal abnormalities associated with mental retardation and other birth defects.
[...]The AneuVysion Assay has proven useful in a number of clinical applications, particularly when a mother presents abnormal ultrasound results, " said Laird Jackson, M.D., director of the division of medical genetics at Thomas Jefferson University Hospital in Philadelphia. "This type of test has a distinct advantage over standard cytogenetics - there's no question that a rapid result is desirable in this type of medically indicated situation."

Why Max Deserves a Life. If we don't catch all defective babies before birth, some doctors have recommended letting them die after birth by Charles Colson and Nancy Pearcey.
Copyright© 1997 by Christianity Today, Inc./Christianity Today Magazine. June 16, 1997 Vol. 41, No. 7, Page 80.
"Sit in Grandpa's chair." The laughing voice rises from my office chair as Max bounces up and down. Max is my six-year-old grandson, and his visits are a whirl of McDonald's Happy Meals and rambunctious splashes in the pool.
When strangers see Max for the first time, they're immediately drawn to the blond, tousle-haired youngster. But in a few moments, they also notice that Max is different. You see, Max is autistic.
And today kids, not very different from Max, are being targeted for elimination.
Prenatal testing has become so sophisticated that doctors can now identify many disabilities before birth. But since most have no cure, the only way to "prevent" the disability is to prevent the baby's birth. Thus abortion is bringing back eugenics--the idea of weeding out "defectives" and upgrading our genetic stock.
Consider: In 1990 Joycelyn Elders said that abortion "has had an important, and positive, public-health effect" by reducing "the number of children afflicted with severe defects." Here was a public health official praising "the eugenic utility of abortion," notes Tucker Carlson in the Weekly Standard. Abortion is cast not merely as a private choice but also as a way to improve the species.
Take the case of Down syndrome. Studies reveal that when pregnant women learn they are carrying a Down syndrome baby, 90 percent have an abortion. Many say they are acting under pressure from doctors and insurance companies. In a Canadian study, one in three of the mothers said she felt "more or less forced" to abort.
The arguments wielded to "force" women are often crassly economic. Nachum Sicherman of Columbia Business School calls abortion of Down syndrome babies "a great cost saving." Dr. Mark Evans, director of Detroit's Center for Fetal Diagnosis and Therapy, observes that prenatal screening costs $1,000, whereas the first year of a Down syndrome baby's life costs about $100,000. How many couples, facing such staggering costs, are tough enough to withstand the pressure?
And if we don't catch all defective babies before birth, some doctors have recommended letting them die after birth. A 1975 poll found that 77 percent of American pediatric surgeons favored withholding food and medical treatment from Down syndrome newborns. And some have done just that, as we know from highly publicized cases like the 1982 Baby Doe decision in Indiana.
Ironically, eugenics is making a comeback just as it has become possible for Down syndrome and other special-needs children to lead fairly normal lives. The average Down syndrome child in America today, Carlson writes, is only mildly to moderately retarded. He can expect to attend school, learn to read, hold a job, and to live independently.
In fact, while these children are being targeted for elimination, one adoption agency can't keep up with the demand for them. "It's not at all difficult" to find homes, Janet Marchese of the Down Syndrome Adoption Exchange told Carlson. Her waiting list rarely dips below 100. World magazine recently told the touching story of a couple who adopted two Down syndrome children.
What do these couples know that doctors don't? They know children like Max. When Max was diagnosed as autistic, I agonized for my daughter, Emily. But he has turned out to be, quite simply, a great blessing to both of us.
"Max is bright, charming, witty, creative," Emily wrote in a letter. It's just that these talents are "channeled in a different way for him." And "different" is sometimes better. "Max seems to appreciate the joy of life more than most of us," Emily wrote. "He brings so much to those around him because of his joyous spirit and exuberance for life. He is a constant reminder of the simple pleasures the rest of us have forgotten."
Raising a child with special needs has transformed my little girl into a mature Christian woman. "I imagine that when God created Max, He took him straight from His heart, cupped him in His hands, and set him down on this earth," Emily wrote. But "God knew when He created Max that he would need extra help. So God keeps His hands cupped around Max... How could a child who is held by God be anything but a gift?"
The experience has taught Emily a profound truth: that "God does not define us by our limitations and shortcomings." If he did, where would any of us be? Some of us are handicapped genetically, others by injury or illness. Some are physically healthy but suffer crippling emotional pain; still others are twisted spiritually by pride or by ambition.
Kids like Max force us to confront ourselves. He is a visible reminder that every one of us is broken and fallen, desperately in need of God's redeeming grace.
Humility about our own shortcomings is the spiritual counter to eugenics. Of course we must craft a persuasive moral case against killing the weak and vulnerable. But we must also pray for spiritual wisdom--for a spirit of humility that refuses to play God and arrogate to ourselves the right to judge these lives worthless.
Emily is devoted to helping people understand children like Max. And as for those who believe such children should be eliminated, I say they are going to have to fight my daughter--and fight me.
For Max, Grandpa's chair will always be there.

Father's Journal
First Haircut
Emmanuel's first haircut was a cinch; he slept through most of it, only to awaken with a coy smile to win everyone's heart. Other parents in the barbershop knowingly approved our efforts to save Emmanuel's fine, straight hair, characteristic of his Down syndrome. His first locket did not go to the baby album; it went to a laboratory to be analyzed.