January 1998 Issue

Merry Christmas and a Happy New Year! Welcome to the January 1998 issue which is dedicated to Barbara Curtis, who kindly granted us permission to print two of her inspiring articles.
The November 1996 draft copy of the Illinois Infant/Toddler and Family Rights Under IDEA for Early Intervention Services, is available by calling The Arc of Illinois at (708) 206-1930. Ask for the EI Rights Manual [source: The Arc of Illinois - Today, December 1997. Editor: Tony Paulauski].

STARnet Illinois Region IV Workshops
February 26, 9:00 a.m. - 3:00 p.m. Effective Communication Strategies for Teaching Non-Verbal Children. Presenters: Cheryl Newsome and Dr. Debra Reichert-Hoge. Location: St. Clair County Regional Office of Education, Belleville, IL.
February 27, 9:00 a.m. - 3:00 p.m. Making the Connection - Transition from 3- Early Childhood Program. Presenters: Mary Hentrich. Location: Shrine of Our Lady of the Snows, Belleville, IL.

Regional Events
The Down Syndrome Association of Greater St. Louis Monthly Parent Play Group meets every second Thursday of each month at 211 North Lindbergh from 9:30 a.m. to 11:30 a.m. For more information call Karen Voda at (314) 645-8939.

News Clippings
A Little Extra by Barbara Curtis, Celebrate Life, PO Box 1350, Stafford, VA 22555. (540) 659-4171. Editorial staff e-mail: clmagazine@aol.com. September-October 1996, p. 10-2. © 1996 Barbara Curtis. Reprinted with permission of the author.

"Welcome home, Jesse," rejoiced the banner over our front door. "We're so glad you're here," proclaimed another. We barely caught a glimpse of them as we turned into the driveway. Then all we could see were our eight children racing for the car.
Inside was eight pounds of precious cargo. Eyes closed, his face rested like a cloud in a sky of soft blue cotton. The waiting he would never remember was over, and he was finally at home. So even though his peaceful sleep would soon be broken by a boisterous welcome, we would never think of changing it. After all, he had a lot of family to get used to.
Jesse's story really began three years before, when our eighth child was born. The nurse's hand on my shoulder felt heavy and sad. My doctor took a deep breath. "I have some bad news for you."
"Doctor, he has Down syndrome, doesn't he?" I felt sure because the baby looked, well, just a little different. Besides, since I was 44, my doctor had warned me of my increased risk of having a baby with Down syndrome, urging me to get an "amnio" (amniocentesis, the test for Down syndrome, is performed on women five months pregnant, who then are given the option of abortion). I had assured him that it was not necessary. I would be grateful for any baby God gave me.
I looked at my troubled doctor and smiled. "It's all right. Remember, I told you it would be."
My husband, Tripp, agreed, "We always said we wanted children in our house forever." Then, looking tenderly at the baby, he said, "We'll name him Jonathan."
The announcements I had made in advance bore a line from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." We sent them out with hasty inserts explaining to our friends that
Jonathan had Down syndrome and that we felt blessed to receive him. Later we found out that, in Hebrew, Jonathan means "gift of God."
We realized from the beginning that God would use Jonathan to change us. But that really brought us to the edge of what we knew, then we were staring down into a canyon of ignorance. The first thing we needed were some facts.
We learned right away that Down syndrome is a chromosomal disorder. Each of us has 23 pairs of chromosomes, the gene-carrying material that determines such qualities as our eye color, height, blood type-everything about us. People with Down syndrome are born with an extra chromosome on the 21st pair.
Maybe calling Down syndrome a disorder is what makes people think it's bad news. Maybe it's because life is more challenging for someone with Down syndrome, and for the family as well. Children with Down syndrome often have health problems. They need to see doctors more often for preventive care. They have to work extra hard to learn things that come easily to the rest of us-holding a spoon, walking, talking, reading, writing. They need a lot of extra teaching and loads of encouragement. In a world where the average IQ is 100, theirs is around 75.
Years ago, people felt pretty helpless when they had a baby with Down syndrome. Parents were often advised to send such a baby to an institution to forget him and get on with their lives. Many medical professionals judged such lives to be not worth living, and thus babies with Down syndrome were denied life-saving operations or allowed to starve to death.
Even today, science is constantly searching for an even better test to determine the presence of Down syndrome before birth, so as to give the mother a chance to get rid of the "problem" before the baby is born. Of course, the basic premise is the same, that such a life is not worth living or carrying.
There is a positive side to Down syndrome, though. Much has changed in the outlook for those born with it. A generation or so ago, people noticed that Down children raised at home fared better than those in institutions. Love was most important, but so were the extra attention and help available from parents and siblings.
Early-intervention programs were developed to help affected children reach their potential and to teach parents how to give them the little extra they need. Many who have grown up with these higher expectations now hold modest jobs in their communities. In overcoming ignorance about Down syndrome, our world has overcome a lot of fear.
We were not afraid when Jonathan was born. God had prepared a place in our hearts for him. Though we knew it would not be easy, we were confident that God had a plan.
Jonathan was a year old when his sister Madeleine was born. Since Jonathan was slow in his development, they soon became like twins. They learned to walk together when Madeleine was I and Jonathan was 2.
They loved to explore and make messes together. But we knew the day would come very quickly when Madeleine's development would leave her brother trailing behind.
We began to think and pray about adopting a baby with Down syndrome so that he and Jonathan could grow up as companions and friends. We worked with an adoption agency to prepare a home study so that when the right baby was born, we would be ready.
In May, 1995 a baby boy was born whose parents could not accept a child with Down syndrome but who wanted him to be with a family who could love him and take care of him. With God's blessing, we were chosen. We named him Jesse, Hebrew for "God exists." We see so clearly now how each of us is proof of God's handiwork.
"For you created me in my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well" (Psalm 139:13-14).
Some might look at Jonathan and Jesse and see something missing. But I look at them differently, reflecting on the fact that God made them not with a little less, but with a little more. Remember the extra chromosome?
Still, some may wonder why. Why would God make people like Jonathan and Jesse? If you ask those close to them, we might say it was something God did for their families and friends. Because when all is said and done, they have really helped each of us. Helped us to become a little extra, where we might have been a little less.

Postscript: The Curtises are now parents of 11, having adopted another boy with Down syndrome who was rescued from abortion. Six months after their adoption of Jesse, the Curtises were contacted by a couple who had learned through amniocentesis that their expected second baby had Down syndrome. Although their message of hope was not enough to persuade the expectant parents to keep the baby themselves, it did convince them that the life they carried had value. After working closely with the parents through the remainder of the pregnancy, Tripp and Barbara adopted the baby boy born on Mother's Day 1996. Daniel was received by his 10 siblings with the same joy and fanfare that greeted Jesse the year before.

My Little Extra. Lessons in Love from an Unexpected Teacher by Barbara Curtis, World, October 11, 1997, p. 26. © 1996 Barbara Curtis. Reprinted with permission of the author.

I call Jonathan my little extra because he has an extra chromosome-you know, that extra one on the 21st pair that causes such consternation in most potential parents. Down syndrome, it's called-named after the doctor who first "discovered" it. Trisomy-21 in modern genetics-like I said: Third chromosome, 21st pair.
Before he was born in 1992, I'd prepared birth announcements with a verse from Elizabeth Barrett Browning: "Gods gifts put man's best dreams to shame." That's how I had felt about each of my children. And that's how I felt when they put this new little baby in my arms and I could see he looked, well, just a little different. Tripp said we'd name him Jonathan-"Gift of God." Those first days were difficult: Jonathan came close to dying. His teeny organs were patched together by Michael Harrisun, a humble man and eminent surgeon. After Jonathan recovered, I learned that until recently many Down syndrome children were denied lifesaving procedures, sometimes even by their parents.
I was grateful Jonathan was born at a time when the medical community-at least once he was out of the womb-respected his worth as a person as much as any of my other children.
Seeing Jonathan spend his first month of life in intensive care was hard. It was harder still to rush him to the hospital-six times in the next 14 months. But with the help of our church community, we managed to get through those times.
Throughout this period, our daily life with Jonathan was pure joy. He needed a little extra help to meet his potential. Although remarkably undemanding, these babies need stimulation to meet normal developmental milestones. Perhaps because we so rejoiced when he was home and healthy, we relished our new responsibility. We'd gather in a circle on the floor around Jonathan and wait for the slightest lifting of his wobbly head. Then we'd cheer as though he'd scored a touchdown. Knowing speech could be a problem, we learned a child's vocabulary of sign language. My older children grew more caring and compassionate every day. A stronger unity was built in our family. That's why we all understood when my son Matthew said, "Wouldn't the world be a better place if everyone had a brother with Down syndrome?" Wouldn't it indeed?
Jonathan was followed a year later by Madeleine. Then by Jesse and Daniel, two baby boys with Down syndrome we adopted. When people express surprise that with our large family we would take on two more with special needs, I tell them, "When we found out what a treasure we had in Jonny, we decided we wanted more."
This is not an easy concept for most people to grasp-even Christians. One of the great sorrows of being a parent to differently abled children has been the inevitable isolation. No matter how much I regard Jonathan, Jesse, and Daniel as special blessings, it remains difficult for those on the outside to share my enthusiasm.
Yes, it has been a challenge. But with adversity has come an expansion of my heart. God has helped me not just to accept, but to rejoice in his plan for Jonathan. Martin Luther once said, "For whoever believes, everything is beneficial and nothing is harmful. For those who do not believe, everything is harmful and nothing is beneficial"
Remember when cynics presented a blind man to Jesus and asked who had sinned, the man or his parents, that the man had been born blind? Jesus answered that neither had sinned, "but this happened so that the work of God might be displayed in his life" (John 9:1-3). Usually we understand this passage to mean that the work of God would be displayed when Jesus enabled the blind man to see. But maybe it means just what it says: The work of God would be delayed "in his life"
That blind man was once a baby and a growing boy. For years his needs had had an impact on his family, his friends, his teachers, his community. Surely the work of God was being revealed each day in the growing compassion and wisdom of those who might otherwise have remained stuck in their own self-centeredness.
God doesn't waste a life he has given. I know as surely as I know each dimple on Jonathan's cheeks that God has used that 21st chromosome to give me more than I would ever have asked for. He offered me a little extra. I'm thankful for that.

Play Pals
Eight-week session starts January 12 to March 2. Location: Saint Anthony's Wellness Center.
Various day and evening sessions for three age groups: Tiny Pals (3-12 months); Mini-Pals (12-24 months); and Motor Pals (2-3 years). Fee: $40 for 8 classes ($5 discount if more than one child is enrolled); Health Smart Advantage discount: $3. To register or for more information, call 463-5340.

People with Special Needs/Down Syndrome Report

George R. Johnson, Writer/Editor
1409 North First Street
Aberdeen, SD 57401
Manager: Robert J. Johnson
Send $5.00 for subscription

Down Syndrome Newsletters Articles
Reasons to Celebrate by Joan Blind. Reprinted from Down Right Active, December 1997, the newsletter of the Tidewater Down Syndrome Association.
Several months ago a co-worker asked me to call a friend of hers, who had just been given the news that her AFP score was abnormally low and because of this and her age, she had an increased risk of having a baby with Down syndrome.
As one would expect, she was frightened and worried. I called her, answered her questions, and attempted to reassure her.
Just a few days ago, this woman had her baby, a beautiful baby girl born without Down syndrome. My friend relayed this new family's great relief, which I understand, how they are thrilled, which I understand, and how now, they can truly celebrate the holidays, which I also understand.
What I don't understand or perhaps should say, what I can't make expectant couples understand is how very much they will come to love their babies with Down syndrome. But when I honestly examine my feelings of almost ten years ago, I guess maybe I do understand. The fears and sadness overpowered my maternal instincts, initially. And if truth be known, I never fully understood those first few days how I could come to love my little girl so very much.
Tonight she and I went on a "date." It was a trip to her school's book fair. She had been talking about it for a week and after our purchase, we sat in the cafeteria and had a hot dog. When we go to the commissary (a grocery store on base, for you non-military types) instead of begging for candy, she wants pasta salad. I love that about her. And if given a choice between a Coke and milk, she will take the milk every time. I love that about her, too.
We all have reasons to celebrate and I am very glad that mine include a precious little girl, who loves milk, pasta salad, and going on dates with her mom.

Web Wanderings
Love and Learning
Inclusion Tip: Using a letter to introduce your child to a new teacher

You can make the inclusion process go more smoothly by giving a letter to your child's teacher which includes:

This is a letter given to Maria's sixth grade teachers - Note how we emphasis Maria's strong points before we present those areas that will challenge her teachers.

Prior to our meeting concerning our daughter, Maria Kotlinski, we would like to communicate to you our aspirations, goals and suggestions for Maria as she is included in your class. As you probably know, Maria has Down syndrome and requires some special considerations. We appreciate your interest in her development and offer you our experience and assistance.

About Maria
Maria is, in her own way, a bright, curious 12 year-old girl. She is a very loving person. Reading is one of her favorite activities and she will spend 20-40 minutes each day reading her school text books, library books or dictionary. Over the summer Maria read two of the books for Language Arts class, The Black Pearl and The Ice Hermit. She is very interested in science and likes to watch Beakman's World (a science television program). Maria also likes to dance and shoot basketball hoops.

Our Goals/Suggestions (listed in order of priority)

  1. Continued Development in Social Skills - This is accomplished by Maria's inclusion in regular classroom settings with guidance as to what is proper behavior. Social/interpersonal areas that you think need attention should be communicated to us so that we can remind Maria of the instructions given by you and further explain them to her as necessary.
  2. Continued Development in Language Skills - Maria's receptive and spoken language skills have improved immensely since she has been included in regular classes. Asking Maria simple questions or having her read questions that are on the board are possible ways of helping her in this area
  3. Following Simple Instructions - Where other children can follow a set of instructions, Maria will probably be able to follow just one or two at a time. Also, she might need to have the instructions written down or the task simplified. Some experimentation on your part can be done but also feel free to ask us if we think a given task is within her capabilities. We want to stretch Maria but not overwhelm or frustrate her.
  4. Writing (Printing) Skills - Maria does not do cursive writing. We have, however, seen a big improvement in her printing of sentences in the last year. Class assignments that require her to fill in the blanks or answer simple questions should be attempted. If Maria does not finish the class assignment, it can be given to her for homework. We will then assist her in completing the assignment.
  5. Organizing - Organizing her books, assignments, desk, class schedule and backpack is another task with which we will all be helping/encouraging Maria. Also, navigating her way to her various classes is in itself a wonderful learning experience for her.
Communicating With Us
We are available immediately after school outside of Mrs. Dennis's room. You can also contact us during your prep-time. Joe's work number is 123 1244. Susan's number at home is 888 7777 but during the day it is usually easier to reach Joe. If there is no answer at whichever number you call, please do leave a message. You can also send a note home with Maria if you like.

Father's Journal
Emmanuel: 1, Pediatrician: 0
Emmanuel proved a pediatrician wrong because by his first birthday, he did weigh 20 pounds and was too big for his baby car seat. We have moved on to another pediatrician and to an infant car seat.
My firstborn is no longer a baby wearing pastels, he is a toddler in plaids and received a birthday card, with money enclosed. How do you tell family and friends that money should be sent to Emmanuel's trust fund, to not compromise his benefits? The birthday card had a picture of a one-year-older standing and holding a baseball bat. Our son is only starting to crawl; he has Down syndrome.