They say a mother’s love is always transformative and that it can work miracles in children.
That certainly rings true in the story of Malu Tiongson-Ortiz and her daughter Clarissa, who was born with Down Syndrome. According to her mother, doctors at the University of San Francisco in California diagnosed the baby’s condition immediately after she was born in March 1987.
“She had a round face, flat nasal bridge, slanted eyes, deformed ears, wide neck and low muscle tone,” recalls Malu.
Now 28 years old, Clarissa was also diagnosed as having bipolar disorder. She is speech and hearing-impaired and differently-abled, with her left leg two inches shorter than the other. Because of her condition, Malu decided to home-school her daughter for six years, from the time she was 18 until she reached the age of 24.
But behind every cloud is a silver lining. Clarissa, despite her condition, had strong artistic leanings. Malu, a graduate of the University of Santo Tomas, where she took up Bachelor of Fine Arts, majoring in Interior Design, discovered that her daughter could draw and paint when she homeschooled her. Clarissa was about 18 years old then.
Malu recalls: “Initially, Clarissa made Picasso-like portraits and I would see figures or silhouettes on the paintings. I would enhance them by adding details and finishing them,” she shares. “Later, I would allow her to paint whatever she wants.”
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Malu herself began painting as a child, around the age of eight, when her mother enrolled her in Rody Herrera’s art class. (Herrera is a student of the late master Fernando Amorsolo). So being an artist herself, Malu did everything she could to encourage her daughter’s talent. She would give Clarissa six coordinated paint colors and let Clarissa do whatever she wanted with them. Malu would fill in the spaces that were not painted and add in details of the figures that she saw, like women, trees and flowers.
The artistic part of it comes naturally for her, but as can be expected, caring for a child with Down Syndrome is not easy. Malu can get exhausted, especially when Clarissa’s mood disorder is acting up. But with much prayer and grace from God, she is able to experience a certain kind of joy that encourages her to keep going.
“God molded my character through Clarissa. She was the instrument to make me a better mom,” she says.
Photo by Malu Tiongson-Ortiz
“God also used Clarissa to put order to my priorities,” adds Malu who used to be a very busy businesswoman and an avid golfer.
“But when I realized that Clarissa needed me, I let go of the things I liked to do. To this day, I do not regret giving up my business and hobbies for my daughter’s sake.” Indeed, it is to her mother’s credit that Clarissa grew up to be productive and healthy. Also, with Malu’s patient encouragement, Clarissa became more active about exploring her artistic talent. She began painting more and more. Then one day, as if providential, Malu met Theresa Sion, wife of famous portrait artist Edwin Sion, through Facebook. They got to talking about art, and eventually the conversation turned to her daughter Clarissa, and how she had paintings of her own.
“Thess was attracted to our paintings and she offered to exhibit them at Fishermall where she has a store,” says Malu.
That exhibit, titled A Special Kind of Art, was held at the Fishermall last September. Although Clarissa was not aware that she was exhibiting her works because of her condition, that hasn’t stopped her or her mother from expressing themselves through art.
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When her daughter Clarissa was born with Down’s Syndrome, Malu Tiongson-Ortiz feared failing as a mother. Drawing on a deep well of faith, she found strength and unexpected joy in facing the challenge
The love between mother and child may be the most primal relationship, but it is not inherently easy, admitted Malu Tiongson-Ortiz. “Faced with a child who needed a lot of my attention, I thought it meant giving up so much for her.”
Questioning her circumstances, she found the answer in her faith. “The reason we ask why something has happened to us is because we’re focused on ourselves,” she said. “With Clarissa, God answered my question—it was to make me a better person, to think less of myself, and to learn what it really means to love.
“It is easy to say you love someone when everything is fine, but when it is difficult, sometimes you say, ‘I don’t love you anymore.’ You turn your back and leave. You can’t do that to a special child,” she mused.
Yet, even this revelation took time to fully accept. As Malu raised her daughter and two older sons, her life continued much as it had before. “I was still working, doing things I enjoyed, like golfing, being with friends, shopping,” she recalled. “But when Clarissa was 18, I discovered that apart from Down’s Syndrome, she was also hearing impaired. It was a wake-up call.”
Finished with what she called her worldly life, Malu devoted her full attention to her daughter. She began homeschooling Clarissa, now 24 years old, and chronicling their experiences in a journal, which was later published as Embracing God’s Purpose for My Special Child. She also discovered their shared love and talent for art. Malu credits God for the special connection: “I’m a painter and I thank the Lord that He gave me this particular gift,” she said. “If I had the ability to sing, I couldn’t teach that to her because she can’t speak. God gave us both this talent so that we can work together.”
Smiling, Malu described their collaboration: “She is the photographer and I am her Photoshop!” She outlines Clarissa’s drawings in black, and then provides her with a palette of colors to paint. Later, Malu fills in missed spots and adds highlights to give the painting more visual depth.
Clarissa’s artwork is strikingly vivid and bold, depicting faces with open mouths and enormous ears. Malu interprets it as her daughter’s expression of frustration at her inability to talk or hear. “Clarissa is very sensitive. Since she can’t hear, she knows from the expression on you face if you like her or are angry,” she explained.
As Clarissa gets older, Malu admits that it is becoming more difficult to understand her daughter, although they communicate using basic sign language, or to deal with her increasing mood swings. “But it will not make me give up on her,” she asserted. “Maybe God is teaching me something again, leading me to the next level of faith.”
Malu reminisced about her own mother, who passed away when Clarissa was an infant. “She nurtured my talent, too. She was my admirer and my fan,” she recalled. “How she worked with me is how I teach my daughter.”
Passed down from one mother to another and illuminated by a deep faith in God, it is a perfect legacy of love.
The common initial reaction of a parent upon finding out that her child has Down Syndrome is … “disappointment,” says Malu Tiongson-Ortiz, mother of 27-year old Clarissa. “There are mixed feelings— anger, despair… masakit talaga, eh (It’s really painful). I felt that something was lost. At the same time I was happy because I have a baby. It was a time for me to turn to God. My questions were, ‘Why me? Why did You choose me to be the parent of this child? Why did You create her that way? Am I capable of taking care of this child?'”
Malu is an author (OMF Literature‘s Embracing God’s Purpose for My Child with Special Needs and Ikaw Na Ang Maganda(You are The Beautiful One)), speaker, six year Vice-President of Down Syndrome Association of the Philippines, one of the founding Board Members of God Is Able International Foundation, artist, makeup artist, art teacher, Pastoral Counseling student, event photographer, interior designer, wife, and mother of three adult children. Her third child, Clarissa, was born with Down Syndrome, is hearing- and speech- impaired, physically disabled, has a shorter left leg than the right, and was diagnosed with Bipolar Disorder.
Malu speaking at a Parenting Seminar
I consider Malu a mighty woman of God, resilient in trials, focused on His will. If I think of a song that she might have been singing, it would be Don Moen’s “I Offer My Life to You” because everything she has, she gives to God. How did she get to this place? It was through The Refiner’s Fire, trials in her life—— becoming a mother of a child with special needs one of them.
Butterfly in the Spring had a chat with her.
BUTTERFLYINTHESPRING (BITS): How did you deal with discovering your child had Down Syndrome? MALU TIONGSON-ORTIZ (MTO): At first it didn’t sink in. There were five doctors who came into my room to break the news: the pediatrician, OB-gyn, the doctors from ICU, Genetics, and Cardio. They came to say, “We are almost certain that your daughter has Down Syndrome. She has the symptoms.” I was in denial. I had a brother who argued with them. They said, “Slanted eyes.” He said, “Did you read our family name? Tiongson. We come from Chinese ancestry.” They said, “Round face.” He said, “My brother and my sister have round faces.” They said, “Flat nasal bridge.” He said, “We’re Filipinos.” When they said, “Deformed Ears” that’s when we realized it could be true. Her ears were folded. A week after medical tests were conducted, it was confirmed.
During the days when I was waiting, that was the hardest part. I was still hoping that the doctors made a mistake. There was grieving.
BITS: What helped you to get over your disappointment fear and grief? “
MTO: When I joined the study group on the book “The Purpose Driven Life,” Ptr. Peter Tanchi explained what Jesus accomplished for each one of us through His death on the cross and explained how anyone who wants to be forgiven for past sins and failure can have new life in Christ. When I received Christ as my Lord and Savior, as the cliche goes, my life has not been the same. It’s was only then I began to understand my purpose and the purpose of Clarissa in my life. Suddenly everything became clear.
BITS: How did you deal with the first few months? MTO: I think I became a better mom. I was trying to figure out what could be God’s purpose for this to happen. As I reflected, I thought it was because I was too busy working so I stopped working for two years and became a hands-on mom. I brought my daughter to the occupational therapist, physical therapist, speech therapist, early intervention program. I would do follow-ups at home. I think it was easier to cope because I would see how my child progressed. I got to talk to other parents and see their hope.
Malu and her daughter, Clarissa
BITS: Where can parents of children with special needs get support? MTO: The Down Syndrome Association of the Philippines is a support group. This was organized by parents of children with special needs. We have grown to more than three thousand members already. We have information for new parents, activities, intervention programs, seminars, counseling. During events, the doctors would come to answer questions.
BITS: What kind of support would a parent of a child with special needs need? MTO: Counseling. I think the hardest part is acceptance. There’s a tendency for new parents na masyadong nagfa-fast forward (to go way ahead). They get overwhelmed with thoughts about how the child will grow, who’s going to take care of their child, which doctor or school to go to. My suggestion would be to take one step at a time, one day at a time. If the child is six months old now, just deal with the issues for six months. Don’t go too far.
BITS: What is the main message of your book, Embracing God’s Purpose for Your Child with Special Needs?
Malu’s Book available at OMF, National Book Store, PCBS
MTO: The main message of the book is finding out the purpose of your child. In order to do that, you need to invest time. You have to discover the child’s God-given gifts. It’s hard for your child to communicate. You have to enter your child’s world. In my case, because my child is speech-impaired, I had to learn Sign Language. I have to help her out with her physical therapy…You have to find out what your child can do.
BITS: You have to find her abilities (not concentrate on disabilities)? MTO:Oo (Yes)! Because sometimes you spend so much time teaching the child ABC, 123 when in fact, your child is the one teaching you the greater things in life… patience, unconditional love, perseverance, contentment. Sometimes parents want to teach what the world teaches… like, “O my child knows how to write her name already or identify the word with picture.” But maybe in her mind she knows that but she doesn’t care.
BITS: So it’s a child-oriented education? MTO: Yes…it’s personalized. I adjust to her needs. What’s more important is what is this child teaching me in my life? The book can help a parent identify the areas wherein your child is helping you to become a better person.
JBITS: What did you discover was God’s purpose for your child? MTO: First, to teach me to seek Him and pray to Him. 2. increase my faith and teach me to trust Him. 3. mold my character. 4. understand the value of life. 5. realize my limits and rely totally on Him. 6. learn to have hope. 7. help other parents of children with special needs. 8. draw me closer to God. 9. teach me compassion. 19. teach me to choose better priorities. 20. teach me to count my blessings. 21. glorify His name.
For another person I know, she became desperate and right at that point when she was about to kill herself the child was able to unlock the door. She thought, that was not an accident. That was a miracle that she got saved by her child with special needs. Another person I met, she has a child with Down Syndrome. I asker her why she wanted to give her child away. She shared this publicly: she said that she couldn’t go to work. I asked her what her work was. She said, “I’m a prostitute.” A year after, she came back to me and said she knows why God gave her her child, it’s to get her out of prostitution.
BITS: How did Clarissa learn how to paint? MTO: When I found out she was deaf and mute, I had to teach her everything by visual means. Because I’m a Fine Arts graduate…
BITS: Not by accident… MTO: [Big smile] Yes, I had to draw, say, an apple. I would draw the apple, write a dotted word A-P-P-L-E. She can identify the picture with the word, trace the word, I put a line so she writes the word again. She will color the picture red then I will make the [using sign language with her fist near her mouth] sign “apple”. So she can learn many things with one word.
Clarissa Painting While Recovering From Chicken Pox
BITS: If you have several children and one of them has special needs, how do you balance parenting? Is there a tendency that you put most of your attention to the one with special needs? MTO: When my daughter came, I told my older sons that their sister would need more attention from all of us. I explained to them, “You have to love her. You have to take care of her especially if she outlives me.” I think it got ingrained in their minds that she is special and they have that responsibility. One of my sons asked me, “Mommy, why are you treating her special? Shouldn’t you treat her like normal?” I explained that she has special needs. By God’s grace, they don’t have any jealousy. They come home, when they see Clarissa, they’re so happy and really pour out their love for her. She brings joy to my sons as well as to my husband.
BITS: How can family and friends of the parent of a child with special needs be supportive? MTO: If you want to support, you can maybe help by getting information about dealing with Down Syndrome. Minsan first time parents, medyo hilo yan e, minsan in denial (Sometimes they are still confused or in denial) and they don’t want to read up on it first because it can be scary. The sicknesses related to Down Syndrome can be overwhelming. It’s also good if the parent will be able to talk to you about her feelings.
BITS: Listening? MTO: Yes. It helps when they can just talk… because there are many things to go through…grieving, denial, anger, bargaining before acceptance comes. You feel like something was lost. But actually you gained something. You know that you have a child, a gift from God. In my case, at first I felt para kang namatayan (it’s like you lost someone to death). It’s painful and scary. When you don’t know what to expect, it’s more of scary.
BITS: There are many mixed feelings to sort… I guess if you’re just listening with empathy and not even saying anything, that could be a form of support. MTO: Yes, that’s a big help.
BITS: Would you have any recommendations for a parent of a child with special needs? MTO: Identify if it’s necessary for you to work. From my experience, our children needs us. If the husband is able, it’s best to invest time with the kids. Be a hands-on mom. For example, if you’re the one bathing her you would know from head to toe what is going on with her body, what her needs are. You know when her stomach is painful and those kinds of things.
BITS: Aside from your book, is there any other book you want to recommend? MTO: Unstoppable by Nick Vujicic and all of his other books. It will let you know how it feels to be a person who has a disability. Like my daughter, she can’t speak so sometimes I don’t know what’s going on in her mind. Joni Eareckson Tada also has a book. Through these books written by persons with disability, you might be able to enter their world and understand them more.
Malu has been invited to speak at Parenting Seminars, events for families with special needs. She and Clarissa do Mother and Daughter paintings. Clarissa paints and Malu finishes her painting. They have had painting exhibits. I’ve been able to purchase their nice selection of all-occasion gift cards which actually make a nice gift in themselves. Aside from being therapeutic for Clarissa, this also makes her productive and be an income earner, focusing on her ability and not her disability.