What moms of children with special needs really want? Not our pity
Honesty hour: For too long, I looked at moms of children with special needs through a lens of pity.
I spent a good two months as an intern for Best Buddies Philippines—a non-profit organization aimed at creating opportunities for individuals with intellectual and developmental disabilities (IDD)—back in 2016. At the time, me and my college friends were mostly asked to assist in various events, where we got to fully immerse ourselves in the environment of people with special needs.
According to Dr. Francis Dimalanta, a developmental and behavioral pediatrician, "IDD" refer to “any of various difficulties pertaining to physical, emotional, behavioral, learning disability, or impairment that causes an individual to require additional or specialized services or accommodations to function age-appropriately.” We all have basic needs, he added, but the difference lies in specific conditions like autism and Down syndrome that need specific care.
I admit there were moments in my internship when I had to pause mid-sentence just to feel sorry for their moms. Motherhood, in itself, is no easy feat—what more for them whose roles can get more demanding than usual? On top of a tremendous amount of patience in dealing with their child’s tantrums and meltdowns, they also need time and money to consistently meet their child’s needs.
Why is it that many describe a person with a disability as suffering?
Fast forward five years later, I was given another opportunity to interact with moms of special kids. This was a Zoom interview I scheduled for a story but even in a virtual environment, I could see how each mom attended to her kid with utmost care.
One has decided to go all-in on being of service not only to her adorable daughter but also other children with special needs; another, without hesitation, shifted gears from being a flight attendant to an online food seller during the pandemic for her special son; an award-winning journalist made use of her professional expertise to find effective treatments for her son’s autism. Each of them had their own unique stories to tell, but what they reiterated to me was one and the same: They neither need nor want our pity.
Award-winning journalist Karen Davila admittedly turned to self-blame when she found out that her elder son David has autism. “I had hyperthyroidism in my 20s and I told my husband that maybe it’s because of my immune system,” she recalled. “I asked myself, ‘Could I have done things differently?’ If I had read enough or known enough, maybe when he was born, he wouldn’t have had it.”
This low period didn’t take long, though. Alongside constant reassurance from other parents and doctors that even healthy mothers had autistic children, she and her husband DJ were determined to go “revolutionary” in finding the most effective treatments that could help their son.
“I approached it that way. I was worried, I was scared, I was anxious, I was stressed, but it was also the journalist in me that researched and really looked for every kind of information out there—anything and everything under the sun—to treat David,” she explained. “That’s a different kind of motherly love.”
In David’s early years, Karen has learned to love without condition. “When kids with autism are very small, it’s a one-way street. They have nothing to give you back,” she explained. “You’re giving everything, but they’re not talking to you back or communicating to you back in a way that you would want or sometimes in a way you would understand.”
I feel now there’s more compassion. But sometimes, I feel they pity us. We don’t want your pity. We want your love, your acceptance, your friendship.
How did she make it a point that her son’s special needs were met when she was still working quadruple times harder and making her mark in the media industry? “I had a village. The lola was there and I had a great nanny who was with us for 12-15 years. It’s a lifestyle I need to have at home.”
About a year ago, David experienced a seizure at their condominium lobby, which served as a “shocking life-and-death moment” for Karen and her husband. “As a mother, all I could do was call on the name of Jesus Christ,” she said. Thankfully, the staff “were very fast thinkers, equipped to assist, and knew what to do to make sure he would stay alive.”
When asked if she feels some kind of stigma around moms of children with special needs, here's what Karen had to say: “I feel now there’s more compassion. But sometimes, I feel they pity us. We don’t want your pity. We want your love, your acceptance, your friendship.”
“For children with special needs, you don’t say ‘Oh, they’re just there.’ Make them part of the conversation. Ask them questions even when it’s slow. Slow is okay,” she added, saying that including them in the regular setting every day, everywhere, could make all the difference.
Ella Infante-Opella started an online bakery last year, just a few months before her retrenchment from an airline company. Through the food brand, she’s able to make ends meet for her 7-year-old son Matteo Castiel, who got diagnosed with autism when he was two years old.
“Autism refers to a broad condition of neurodevelopment disabilities that impact two core domains: social communication and restricted, repetitive patterns of behaviors or interest,” as per certified autism specialist Dr. Rose Yanga. “The persons in the spectrum have difficulties in social and emotional reciprocity, deficits in non-verbal communicative social behavior, and struggles in developing and maintaining developmentally appropriate social relationships.”
AUsome Goodies by Matteo has been of great help for her family in the time of pandemic. Aside from being a good source of income, it has also helped Matteo overcome boredom and loneliness at home. “Nakakatulong din yung business para maging busy siya. Siya magmi-mix, siya magpu-put ng sugar, chocolate chips, para hindi siya malungkot dito sa bahay.”
Kapag kasi nakakareceive kami ng mga ‘kawawa’ comments, nakaka-down sa aming magulang kasi nakikita naming hindi lahat ng tao, tanggap sila.
Ella hopes that others would see special needs parents beyond their children's condition. “There are people who see us in a negative light. Kawawa daw kami kasi may autism ang anak namin. That’s their initial reaction,” she said. “But I encourage them na kapag nakameet ng nanay na may autism, ang sasabihin, ‘Ah, talaga? Meron siyang bagay na magaling for sure.’ Kapag kasi nakakareceive kami ng mga ‘kawawa’ comments, nakakadown sa aming magulang kasi nakikita naming hindi lahat ng tao, tanggap sila. Hindi lahat ng tao, open.”
Through Matteo, her patience and love have been strengthened like no other. “Sometimes, things may feel too heavy, kailangan ko na ng break. But hinga lang, hinto lang, hinga, laban ulit para sa anak,” she said. “I know my special needs child deserves a special mom like me.”
Michelle Ressa Aventajado, the executive director of Best Buddies Philippines, had been drawn to individuals with IDD even before her child with special needs was born. In fact, she started volunteering her time in her own community at the early age of 15.
“Looking back on all of it, it was clear that God was preparing me for her birth,” she mused.
Her lovely daughter Gelli has Down syndrome—a condition where an individual has an extra copy of chromosome 21. “This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby,” said behavioral developmental pediatrician Dr. Sheryl Kho. Among its effects are delays in development, behavioral issues, and other medical conditions such as heart problems, intestinal problems, and hearing issues.
Michelle has had her fair share of unsolicited comments and insensitive questions from some people: “Did you take drugs when you were pregnant?” “Did you fall on your belly then?” “I’m sorry to hear that your daughter has Down syndrome.” It’s undoubtedly exasperating to hear comments like that. She, however, has learned to rise above them and see them as opportunities to educate others.
“Why is it that many describe a person with a disability as suffering? My daughter does not suffer because she has Down syndrome,” she stressed. “Gelli faces many challenges because she has it. But she does not suffer simply because she has an extra chromosome.”
Gelli has opened up our world to people we would have never met had she not been born with an extra chromosome.
After all, Michelle could only turn out grateful for her bundle of joy, who has changed her life in more colorful ways than one. “She brought our team together, weeded out the people who didn’t need to be in our lives, and showed us with panache exactly what is important in this life,” said Michelle. “She shifted our perspective, made us more aware, made us better, gave us more patience, and continues to be our greatest teacher.”
“Gelli has opened up our world to people we would have never met had she not been born with an extra chromosome—beautiful, amazing, interesting achievers whom we would not have known,” she continued.
If you suspect that your child has developmental or learning problems, you may contact Dr. Dimalanta at [email protected], Dr. Kho at [email protected], or Dr. Yanga at [email protected] for a consultation.
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