February 2000 Issue

Our next monthly meeting will be held on Friday, February 11th at 6:30 p.m. Tina Kaiser and Gloria Bishop will share the therapeutic techniques learned at the National Academy for Child Development® (NACD) Parent Training Course they attended in Arlington, Texas on January 28-9. The meeting location is at CARD - the Collinsville Area Recreational District (Splash City). The address is #10 Gateway Drive. Directions: take 270 East, exit on 255 South, take 55 North, go to the first exit, which is Route 157, take a left on 157, go to the second light, which is East Port Plaza Street, take a left, go to Gateway Drive and turn right, go ½ mile to the CARD Office which is on the left side of road.

We gratefully thank Missy Kichline and IMPACT, who photocopied the Health Care Guidelines for Individuals with Down Syndrome: 1999 Revision that were distributed at our January meetings and for lending Credo for Support, produced by Norman Kunc and Emma Van der Klift. This video may be ordered from AXIS Consultation and Training Ltd. (604) 723-6644, fax (604) 723-6688. The second video, graciously loaned by Joan Kane, Journey of a Lifetime.... Beginning with the End in Mind, may be ordered from the Karen Gaffney Foundation, (503) 973-5130, fax: (503) 973-5130, e-mail: kgaffney@teleport.com.

Enclosed with this newsletter is a brochure, Simple Answers to Kids' (not-so-simple) Questions about Down Syndrome, produced by United Parent Support for Down Syndrome (UPS for DownS), a volunteer organization based in Northwest suburbs of Chicago.

Regional Events

February 16, 10:00 a.m. - 11:00 a.m. Easter Seals Office, 602 East Third Street, Alton, IL. Lekotek-Easter Seals Information and Support Meeting, Sensory Integration and the Young Child. Refreshments and informal discussion included. Please RSVP by February 11th by calling 462-SEAL.
blank.gif  March 11, 8:00 a.m. - 4:00 p.m. Down Syndrome Association of Greater St. Louis 2000 Annual Conference: Making Connections. Keynote speaker: Beth Schaffner, Inclusive Schooling Coordinator at PEAK Parent Center, Inc., in Colorado Springs, CO. Her topic is Friendship Building Strategies. The conference will feature a concurrent Teen and Adult conference for individuals with Down syndrome ages 16 and older. Sheila Hebien and her son, Chris from the National Association for Down Syndrome in Chicago will speak on health and fitness. Afternoon sessions will include a drama sectional and dancing sectional. Registration for the Teen and Adult conference is limited to the first 25 registered. Location: Wydown Middle School, 6500 Wydown, Clayton, MO 63105. Registration includes a box lunch. For more information contact Karen Kramer at (636) 227-2105.

March 24-26. Family Conference 2000. Conference highlights: More than 30 workshops featuring nationally known presenters on topics of interest to families and individuals with disabilities; Inspirational and motivational keynote addresses; Entertainment Friday by Chicago's first professional "mixed-abilities" dance company comprised of multi-talented artists; Exhibit hall to shop and browse; Two evenings of fun and networking at the Friday and Saturday events; Special Hospitality Room for families to relax, network and receive information on disability issues.
Many state agencies will also be available to highlight their family program/services. Conference fee: $99.00 per family, includes Friday reception, continental breakfasts, Saturday buffet lunch, Saturday dinner and Sunday box lunch. Reservation cutoff date is March 1. Financial assistance is available. Location: Crowne Plaza Hotel, 3000 South Dirksen Parkway, Springfield, IL (217) 529-7777. For a conference program or for more information call Susan Ferry at (217) 824-4776, e-mail: sdferry@aol.com or Sharon Gage, STARNet 397-8930 ext. 169.

National Events

July 27-9. National Down Syndrome Society (NDSS) conference, Visions for the 21st Century. Location: Loews L'Enfant Plaza Hotel, Washington, D.C. For more information contact NDSS at (800) 221-4602, e-mail: info@ndss.org, URL: http://www.ndss.org.

moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.

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

August 4-6. National Down Syndrome Congress (NDSC) 28th Annual Conference. Location: Hilton Washington and Towers, Washington, D.C. For more information contact NDSC at (800) 232-NDSC, e-mail: info@ndsccenter.org, URL: http://www.ndsccenter.org/.


Computer Banks is offering free refurbished computers to children with special needs. Monthly parent orientation meetings are held at the First Presbyterian Church, 321 S. Seventh, Springfield, IL. To pre-register call (217) 528-4311. For further information contact Gina Hawk, Great River Service Coordination in Jacksonville, IL, (217) 243-2330, fax: (217) 243-3971.

Down Syndrome Articles

A Small Soul for the Lord by Brian Caulfield, The Latin Mass, Spring 1999, pp. 72-4. Reprinted with the permission of Roger McCaffrey, Editor and Publisher of The Latin Mass.

Donna Camilleri rises early to say a Morning Offering, and to pray to her guardian angel and for the intentions of the Holy Father. She spends fifteen minutes in meditation before the Blessed Sacrament and recites a Rosary before morning Mass. During the day, she prays two more mysteries of the Rosary, does spiritual reading, covers a chapter in the Bible and makes a string of Rosary beads with a gold crucifix at the end. After each prayer period, she chants a personal song to the Lord, "Jesus, I love you."

Donna, who is 32, is not a cloistered nun of some traditional order. She is a consecrated laywoman living with her parents on Long Island and working in the family doll shop near the train station. She calls the expanded Cape Cod on Dewey Avenue in the comfortable community of North Bellmore "my convent," and has taken the name Sister Angelica. Those who know her, and most who meet her, see a touch of the angelic.

Donna has Down's syndrome. The condition brings to those who suffer with it varying forms of mental retardation and physical disability that can make daily living difficult; and the term, "simple-minded" is sometimes applied. In Donna's case, "simplicity of mind" would be more accurate. She speaks with eagerness of "my Blessed Mamma Mary," and without affectation describes the times she heard Jesus speak to her and felt His kiss on her cheek. By herself or when listening to one of her parents reading the Bible, she will start speaking to God or one of the saints.

"Ad-libbing with the Lord," her mother, Dorothy, calls it.

"She can read somewhat, but needs things explained," her mother says. "She eventually catches the meanings of things, sometimes in a more simple and direct way than most of us would. It's amazing what she can understand and how much she remembers."

"She is God's blessing. He meant her as a gift," says her father, Louis. "She is pure goodness and has changed everyone in the family for the better. "

When she was a young girl, he wrote her a poem, "Dear Daughter Donna," which begins, "Flower sweet my little child, you are love / Precious gift, my little child from above..."

The Camilleris are acutely aware of the fact that fewer and fewer children with Down's syndrome are seeing the light of day, with the advent of genetic screening in the womb and the killing of "defective" babies through abortion. What life would be without Donna, they cannot imagine. What goes through the hearts and minds of parents who abort the most helpless among the helpless in the womb, they don't even want to consider. They look at their daughter as a grown woman with special needs who has filled a need in their own hearts with the unique love that only parents of a disabled child can know.

Since September 29 of last year, they look at their daughter also as Sister Angelica, the name she took in honor of Mother Angelica, of the Eternal Word Television Network, who has become a special friend of Donna's. On that day, the Feast of the Archangels, Donna made a private promise of chastity during a Mass celebrated in her home. Present were her parents, her seven brothers and sisters, her six nieces and nephews and friends from the local parish. Father Robert P. Petekiewicz of St. Barnabas Church in Bellmore received her promise.

"Everything about her is centered about the Lord," said Father Petekiewicz. "She has a deep-down desire to be a nun. She's not able to live in community, so the best way to live that life in her circumstances is to live as a consecrated woman at home. In her own way, she is truly a nun. Most of her day is devoted to the Lord in prayer; and her vow of poverty is the simplicity of her life."

Donna was born May 16, 1966, the youngest of eight children. News that she was a Down's syndrome baby- "mongoloid," as an earlier generation would say-sent Dorothy Camilleri's heart sinking. She had delivered seven perfectly healthy children who were growing up quite happily. What had she done wrong to deserve this? How would she cope with a handicapped child? Was this a message from God?

"I cried more than I could believe I was able. I couldn't imagine that God could do this to me. But that lasted only a short time."

Her husband was quick to comfort and support her: "Dot, no tears before we have to shed them."

They soon resolved to reject medical advice to send the child to an institution, where she would be among other disabled children and receive special education. They would take her into the bosom of their large. Catholic family, and find in time that Donna was indeed a message from God-but not of the kind her mother at first thought.

"She has given us all a whole new perspective on life, and on death," says her mother. "She'll just say things, as though out of nowhere, that will strike you, and really make you think. Once she said, 'You know what I look forward to? When God calls me. Oh, I can get so excited. My Mamma Mary will take me to be with her and Jesus forever.'

"She makes you wake up and face your faith and ask yourself if you really believe what the catechism teaches, and if you are really living it to the full. Or are you living too much the way the world lives and seeing issues like death through that perspective?"

Louis Camilleri was careful about rearing his children in the Faith, with Sunday Mass and regular Confession a must. With eight growing youngsters making for a hectic home life, though, too little time was being put aside for prayer and religious reading. That is, until Donna expressed her simple will.

"We prayed at meals only on the big holidays, Christmas and Easter and so on," her father explains. "Donna asked why we didn't pray before every meal. She prayed silently to herself anyway. It seemed like such a simple thing, but it has made such a big difference in our family, and even in the way we witness to the Faith. We pray now before every meal, even when we have guests, or when we eat out. At first we would feel a little awkward and think that people might look at us like religious fanatics. But we just look at our daughter and know it's the right thing to do."

To look at Donna is to see something of the innocence that Jesus must have seen in the faces of the children whom He insisted must be brought to Him. When this writer visited the Camilleri home on a winter Sunday, she came forward with a polite "How do you do." She sat politely, well-attired in her Sunday best dress and shoes. She showed her carefully kept prayer books and her carefully made Rosary beads. She spoke slowly, but without the least bit of difficulty or uneasiness about topics most dear to her. She sang her original chant, "Jesus, I love you," with a high-pitched yet mature voice, and one got the distinct impression that He was nearby listening. The story behind the chant opens a window to the joy of her heart. While visiting Mother Angelica's television network in Alabama with her mother, Donna went to Confession. As a penance, the priest told her to say "Jesus, I love you" ten times. Obedient, Donna began to recite the penance out loud and suddenly "something hit me" and she began singing the words with an escalating fervor. Even penance had become praise in her heart. Since that time, she chants the simple words after each Rosary.

Her impromptu First Communion also was revealing. Her mother had been charged by the pastor to lead catechism classes for learning-disabled children. Donna was not quite six at the time, in First Communion class, and became enraptured by the idea of receiving Jesus. One Sunday, she got on the Communion line while her mother had her head down in thanksgiving after receiving.

"She came back with this smile on her face and the greatest look of peace," Dorothy Camilleri recalls. "She had gone up and received on her own, just like that. She thought she was ready and in her innocent way made her own decision."

Donna also still recalls that day, more than 25 years later. "I went for my Jesus," she says. She also recalls a more recent incident.

"One night, Jesus said, 'Donna, you are my little sister."' Her desire to become a consecrated woman was intensified.

"She had brought it up," her mother explains, "many times over the years, and I had always said, 'Donna, you're a sister in your heart. It's not possible for you to be away from home.' Then my daughter Marijane said that maybe it was a request that we should honor. Maybe God really was calling her to some form of religious life."

"The way I look at it," says her father, "is that each one of my children has a vocation, whether to marriage or the single life in the Church. Donna -Sister Angelica- is called to be a religious here in the home. We were glad that we could make this possible for her. She is the one who inspired us."

Growing Up

Louis and Dorothy Camilleri were both raised in Brooklyn, in St. Ephrem's parish in the Bay Ridge section, where they met and were married fifty years ago. They moved to North Bellmore in 1951, before the streets were paved in that southern Long Island town, making an early contribution to the postwar march to the suburbs and the impending Baby Boom. They moved into a two-bedroom house, financed by the GI Bill, with one child in arms and another on the way. With the birth of each child, the Camilleris had to make the decision whether to move or to add on to their pleasant but cramped Cape Cod.

"First we went up a floor," Louis Camilleri explains. "Then we went back; finally we added to the front of the house. It came down to economics. Could we afford to buy a bigger place, or would it be better to stay and add to what we had? It made more sense to stay."

He worked as a chemist until his retirement. About ten years ago, his wife turned her love for dolls-both antique and modern-into a shop in Bellmore. Donna helps out there afternoons; and many people drop in just to say hello and exchange a few words with her.

Donna began special education at age 3 in schools on Long Island. When she reached her mid-teens, her parents did not think she was getting anything out of the special classes, so they enrolled her in the local public high school, which had tracks for children with special needs. She learned typing, filing, collating, packaging and other skills which make her an asset in the family business. She stayed in school until she was 21, and received a standing ovation from the other students at graduation.

"Wherever she has gone, she has been loved," says her mother. "I don't know anybody who does not love Donna. Her behavior has always been exemplary, which isn't always the case with children with her condition. She presents herself well, always insists on being well dressed, and interacts with people well. People see in her a peaceful and serene person."

Recently, an artist who was exhibiting her dolls at the store said to her, "Donna, you must really love dolls." She responded, "Not really. Not so much any more," referring to her intensified love of religious objects since her consecration. Her collection at home features an array of saints' statues and other religious objects, including a doll of Padre Pio, the Capuchin monk who bore the stigmata, and a fair likeness of Pope John Paul II, whom she calls "my Holy Father."

She has many pictures of herself with Mother Angelica, taken during her two visits to EWTN. The two took an instant liking to one another, and Donna expressed to Mother a deep desire to become a cloistered nun. Donna carries everywhere a well-worn book of meditations written by Mother Angelica, and often watches EWTN.

"I think Mother Angelica has influenced our daughter very deeply," says Dorothy Camilleri. "She is a very holy and deeply spiritual nun. She took Donna in her arms and talked to her like her own daughter. I wasn't surprised that Donna wanted to take the religious name Sister Angelica."

Growing up with Donna as the youngest has made all her siblings especially sensitive to people with handicaps. More generally, they have felt called to witness to the deep love Christ has for His "little ones." One of Donna's brothers lives at home and helps with the bookkeeping for the store. Her three other brothers and three sisters live in or around Long Island. One sister, Marijane, is temporarily in Rome, studying for a doctorate in canon law at the Angelicum. She has a civil law degree and is a member of the bar in Pennsylvania.

"They all take great pleasure in being with her," says her mother, "and have told me many times how empty their lives would be without her. I sometimes worry for the future. If I should predecease Donna, what would happen to her? All of my other children have said that they would take her into their homes. Marijane has said to me that as a single woman, she sees that it is her special calling to take care of Donna if anything should happen to me. That's so comforting to know. But I guess I still have the feeling like any mother, that no one can quite do it the same as I can."

Father's Journal

Slip of the Tongue
Emmanuel's favorite playthings are letters, words and books. At his last school evaluation my son was asked to identify only four letters of the alphabet and then the evaluator urged my son to move on and "do something fun now".
Donna calls her parents "Dear" or "Sweetheart," and reminds them every once in a while that she's not just Donna any more-she's Sister Angelica.
"At times," Dorothy Camilleri reflects, "you can envy her. She sees beauty in everything. If it's raining, well, for her that means the flowers and the grass will grow and the air will smell nice. If it's sunny, that's beautiful too. I think with someone like Donna, God makes for Himself a little soul so He can rest in it and show Himself in that way to others."