Parenting Special Children

CEBU, Philippines -  The moment Malu learned of Clarisse's condition, all kinds of emotions welled up at once. "I was happy and excited over her birth, but I also felt anxious, angry, despair, guilt, even ashamed. Perhaps, most of all, I experienced a terrible fear of the future," Malu shared in her book "Embracing God's Purpose for My Special Child" published by OMF Literature, Inc.

With her book as reference of her "Special Parenting" talk during the culmination of PWD (Persons with Disability) Month in July, at the Ayala Center Cebu's The Gallery, Malu shared how happy and excited she was over the birth of Clarisse, her third child. But she was not sure how she would cope with such overwhelming burden for the rest of her life. "I wondered if there would ever be laughter again or whether the happier side of life had been lost forever. I wished I could feel joy, but the pain was too strong," she said.

Down Syndrome (DS) is named after the English doctor, John Langdon Down. He was the one who defined features of the condition, in 1866. Down Syndrome soon came to be used instead of previous degrading labels such as Mongolism, Mongoloid, or Mongol, which have since become unacceptable and misleading, according to Malu.

In 1959, the French physician Jerome Lejeune identified DS as a chromosomal anomaly. Cells of individuals with DS, he observed, have 47 chromosomes present instead of the usual 46. It was later determined that an extra partial or complete 21st chromosome results in the characteristics associated with the condition.

Malu's daughter Clarisse was born multi-handicapped. As a child with DS, she was diagnosed to have moderate to severe mental retardation due to her inability to hear. Her left ear was found to be "severely to profoundly deaf" while her right ear was "moderately to severely deaf." Because of this, she was unable to speak.

In addition, Malu related,"My daughter was also born with a left leg that is two inches shorter than her right leg, so her hip hurts when walking for a long time. In fact, her muscles and ligaments on her left foot have stiffened permanently in a tiptoe position. Clarissa's mood swings and occasional bursts of rage were due to a mood disorder."

Then Malu got to the main topic of the talk: The Financial Challenge in raising a child with special needs. She understood very well that there was no way to avoid tests and future bills. "To start with, giving birth in the US cost a lot of money," she pointed out. "I'm thankful to my husband Claro and my father-in-law. But I couldn't help worrying about the future bills we would have to pay for all our daughter's tests. Having a special child is financially draining."

While parents of "normal" kids only need to pay the hospital bills, doctors' fees, immunizations, etc., Clarisse had to regularly see her pediatrician, an endocrinologist, an orthopedic doctor, an eye/ear/nose/throat specialist, a dermatologist, a speech therapist, an occupational therapist, and a physical therapist. Malu and her husband Claro also needed to set aside a substantial amount for Clarisse's yearly blood works, electrocardiogram test, hearing tests, thyroid test, corrective shoes, and weekly purchase of anti-seizure medicine for her mood disorder, as well as ointments for her allergies. Highly sophisticated hearing aids for both ears came later on.

Good thing that Malu and Claro were able to establish a deeper relationship with God. Malu's doubts melted away as soon as they began serving at Christ's Commission Fellowship. She has learned to trust and rely heavily in the Lord for the family's needs. "I believe God allows the conception of a special child for a special reason. He wants us to know that regardless of how difficult our situation, He can give us the grace and provisions to meet our needs," she shared in affirmation to what God has promised, through the Book of Matthew, when He commanded that we seek first His kingdom and His righteousness, so all things can be given to us as well.

Malu assured "special parents" and their caregivers and guardians that when God gave us our special child, He knew that it will entail a lot of medical expenses and personal sacrifices. "The Bible has 2,350 verses relating to money, for the Lord knows that money matters," she said. "I believe God allows difficult financial circumstances for us parents with special children for three basic reasons: to accomplish His purpose for our lives and the lives of our special child; to develop and mold our character that we may become the parents we were meant to be; to discipline us and to build our faith." She added that the responsibility even extends to other goals, such as being able to help other parents, developing compassion for others, putting priorities in the right order, learning to count one's blessings, and drawing one ever closer to God.

In her book Malu writes confidently, anchoring on Biblical perspective, that no special child is an accident; that each young life is entrusted to parents by a loving God who has special purposes for each one. The pages of her book are strewn with powerful stories shared by other parents of special children, as well as encouragement, practical advice, and factual information to aid parents and the whole family of special children.

Malu's book is now available in Cebu. Among other things, it lists contact numbers of the Down Syndrome Association of the Philippines, Inc. (FREEMAN)