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.
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? “
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.
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?
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.
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…
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.
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.
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.
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.