The special child as a special blessing
by Rowena C. Burgos
Philippines - A few hours after MALU TIONGSON-Ortiz gave birth to Clarissa in 1987, a pediatrician told her that the child had Down Syndrome. Her physical features such as low-set and deformed ears, slanted eyes, small nose, low nasal bridge and straight crease on her palm, all pointed to such a conclusion, the doctor said.
Down Syndrome, also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. The condition was discovered by Dr. John Langdon Down, after whom it has been named.
Ortiz wished the doctor was mistaken. "I questioned God over and over. Why me, Lord? What have I done to deserve this?" She then asked a doctor to do a battery of tests on Clarissa. A week later, the results confirmed Clarissa's condition. "It was a relief in a way because I realized I had to start somewhere," Ortiz says.
Ortiz now strongly believes "God had a purpose for her in our lives."
The youngest in a brood of three, Clarissa is multi-handicapped. She was diagnosed to have moderate to severe mental retardation due to her inability to hear. Her left ear is severely to profoundly deaf, while her right ear is moderately to severely deaf. She is unable to speak.
She was also born with a left leg that is two inches shorter than her right leg, causing her hip to hurt when walking for a long time. Her muscles and ligaments in her left foot have stiffened permanently in a tiptoe position.
According to a psychiatrist, Clarissa's mood swings and occasional bursts of rage are due to a condition called bipolar (a mood disorder).
Despite Clarissa's condition, her mother has learned many lessons from her. "While I was teaching her ABC's and 123's, she was teaching me the greater things in life-unconditional love, patience, perseverance, contentment and simplicity," Ortiz says. "Because of her, I was drawn closer to God. She is one of God's greatest gifts to our family."
After Clarissa finished Special Education, she started homeschooling in 2005. "She progressed a lot. She's exposed to regular and special needs kids of all ages. The regular kids, in turn, learn how to deal with children with special needs. It works both ways," Ortiz says. "Through homeschooling, I discovered her talent in visual arts."
Clarissa's subjects are her mother, father and two brothers, Carlo, who's working for a car company, and Paulo, a law student. "Drawing has been her way of communicating with us," Ortiz says.
Her oil pastels and acrylic paintings feature people with big ears and open mouths. "That's her way of expressing she can't speak or hear," Ortiz says.
Sign language, "scrapbooking," independent living and "more adult" activities like going to the grocery are now part of Clarissa's homeschooling. But what she loves most are watching concerts and plays, aerobics, ballroom dancing and walking in the park.
For Ortiz, homeschooling is an investment for Clarissa's future. "We surely do not want to spend the rest of our lives with an ill-mannered, selfish, skill-less, unhappy, disabled adult. I may not be with Clarissa all her life so I do not want her to become a burden to her siblings. Homeschooling has made me realize that I am the best teacher for her."
There are numerous benefits for home-educated children with special needs, Ortiz adds. "My daughter learned at her own pace and her needs were met properly. She also has the opportunity for successful learning experiences which motivate her to keep on trying when she encounters difficult concepts," she says. "We were able to instill our own personal and spiritual values into our teaching. Our time was flexible and there was no wasted learning time. Instruction was individualized. She had quantity time with our family and less time spent away from home."
Ortiz, an interior designer, has stopped working to be a full-time mom. A board member of the Down Syndrome Association of the Philippines, she does family and spiritual counseling. At times, she accepts design projects and teaches art classes with friends Emy Dee and Marissa Yang.
Ortiz's book, "Embracing God's Purpose for My Special Child," was launched at the Manila International Book Fair in Mall of Asia.
Published by OMF Literature Inc., the book features Clarissa and other inspirational stories of parents with special children, "biblical parenting," adolescence and sexuality, medical and health issues and planning for special children.
"Special children are like angels sent by God to us for a special mission. Clarissa is God's instrument for me and Claro to mold our characters and make us better people. Through her, God taught me to be the mom I never thought I could ever be," Ortiz says.
For more info on the Down Syndrome Association of the Philippines, call Malu Tiongson-Ortiz at 0917-8966258; e-mail firstname.lastname@example.org.