Being a mom calls for 24-hour duty, seven days a week. It’s a job that doesn’t pay, and quitting is not an option. But then you are rewarded with hugs, kisses, and smiles, and you are inspired to be the best mom ever. You save Mother’s Day cards with stick-figure drawings and keep the flowers that little hands have lovingly picked from the garden.
But being the best mom ever includes more than treating a boo-boo or reading the same story come bedtime. If you have been blessed with a child with special needs, to say that each day is a challenge is an understatement.
But here are four moms who say that no matter what, an incomparable, overwhelming joy is present in each and every moment.
An angel named Adrian
“Binigyan kami ng angel,” shares Grace Adviento, mother to Amanda and Adrian. “Kasi nga angel siya; hindi siya marunong magsinungaling, wala siyang bisyo, pero, may iba.”
As his mother spoke, seven-year-old Adrian, in his orange shirt with Tigger design he wears all the time, descended the stairs into the living room.
He saw something out of place right away. Small as he is, he began to push the piano bench to the corner of the room, ignoring everyone else. “May problem siya with socialization and adaptation,” explains Grace. “At kailangan nasa dating puwesto yung mga silya nung huling nakita niya.”
Adrian is a child with many quirks, the first of which Grace found to be cute. “He would hold up his hands na para siyang elesi, then he would spin himself,” recalls Grace about Adrian at age 1. But as adorable as he was, Grace’s family sensed that something wasn’t right.
A trip to the ear specialist was scheduled; it seemed as if Adrian couldn’t hear his Loloís calls. But the doctor saw something else: Adrian showed signs of Autism Spectrum Disorder.
It was Valentine’s Day, 2003. “Parang kumapal lahat ng nasa paligid ko, naging hazy,” Grace says of her immediate reaction.
Click here to read the rest of Adrian's story and Mommy Salvacion's experiences with Amboy.
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Read on for the rest of Adrian's story and Mommy Salvacion's experiences with Amboy.
“After that, sabi ko, ‘Where can I go?” She did not hesitate; she learned about Autism Society Philippines and sought counsel the very same day. Today, she is the vice-president of the organization.
She got the answers to her questions, rallied all the family members, and told them about Adrian’s condition. “I got reading materials from ASP then pinaphotocopy ko, tapos binigyan ko lahat ng kamag-anak ko. Sabi ko, ‘eto yung anak ko.” Grace had no qualms about letting everyone know about Adrian, and she spoke about him, even with curious strangers. “It helped lessen the load,” Grace admits.
Grace also tried an assortment of therapies, diet changes, and home programs. Frustration mounted for mother and son, with each lesson needing consistent repetition. But these challenges were soon replaced with milestones she holds dear. Grace goes on and on excitedly: “Nakakabilang at nakakasulat na siya ng 1 to g 100, nakakapag-tell na siya ng time, alam na niya lahat ng colors. nakaka-spell na siya ng three letter words, he can write his full name,” At home, Adrian has learned to be self-sufficient, fixing his own snacks and throwing out the trash when needed.
Grace has learned that life with Adrian requires a lot of patience and hard work. But she gathers her strength from her heartís deepest desire: to be a good parent to her child. “Makakapa mo ‘yon, na tulungan yung anak mo. Just take it one day at a time,î Grace says. “Tapos, maging masaya ka lang!”
A still and quiet joy
The way to Salvacion Perez’s house was a difficult one. One must walk through a maze of narrow roads to find this humble home in the heart of Pasay. Here, Salvacion lives with her children: Jon Robert, Jasmine Rose, Ron Jobert and her husband.
While carrying Ron Jobert, who was wheezing each breath from his palsy-stricken body, Salvacion eased herself onto a Monobloc chair in their makeshift dining area. She begins her story: “Mahina yung heart beat niya nung pinanganak ko siya. Na-ICU siya, tapos nalaman na may pneumonia siya. Isang buwan siyang nasa ICU. At kung anong tinagal niya don, nandun din ako. Para kaming nasa preso,” she starts.
“At iyak lang siya nang iyak. Sabi ko, ‘parang hindi normal ang anak ko.” Ron Jobert or “Amboy” eventually went home, but as the months passed, Salvacion noticed that he was not growing at a normal pace, and his feet were getting smaller. When pneumonia hit her fragile son for the second time in sixth months, she grew alarmed, and immediately brought him to the hospital where she was told the news: “May club foot siya. Nadetect ng doktor na candidate siya for cerebral palsy with congenital defects,” she recalls.
Click here to read on for the rest of Amboy's and Danby's stories.
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Read on for the rest of Amboy's and Danby's stories.
The mother sought help for her son right away; at six months, Amboy began undergoing physical therapy, which brought on painful wails from him and tears from his mother. This was done on a regular basis, until financial constraints kept Amboy away from therapy. “Pero sa awa ng Diyos, may good Samaritan na nag-refer saímin sa Philippine Cerebral Palsy. Tapos dun na tinuloy yung physical at occupational therapy.”
She has learned to count her blessings since, but sometimes she can’t help but wonder: “Saan ba ako nagkamali?” especially when she sees other three-year-olds gaily running outside her house, with a spastic Amboy unable to even lift his neck to see such a sight.
A flurry of thoughts occupied Salvacionís mind in the first six months of Amboyís life. “Hindi ko inaasahang magkaroon ng ganitong anak. Pero sabi ng mga nanay sa PCPI, kapag hindi mo tinanggap, lahat ng kinikilos mo, lahat ng ginagawa mo, mahirap.”
Now, nothing stops Salvacion from seeing the gift before her very eyes, and she beams at Amboy’s every achievement. “Kapag may word siyang nabanggit, gusto kong ipagmalaki sa lahat! Kahit na gabi, gigisingin ko yung ama niya, “Tingnan mo! Nagsasalita si Amboy!” It is her dream m that Amboy will eventually stand and walk by himself.
“Siguro masaya rin siya,” says Salvacion as she smiles down a still sleeping Amboy. “Dahil alam niya na mahal namin siya. Ito yung pinagkaloob sa amin ng Diyos, at itong batang ito ang pinaka-iingat ingatan namin.”
Forever a child
In the middle of taking a family vacation and trying to set up a home cooking business, Twinkle Justiniani, mother to Danby and Belle, took time to sit and recall a story that began more than 15 years ago in Iloilo.
“Danby was three years and five months when he was first diagnosed with Pervasive Developmental Disorder. He was comfortable with adults, but he somehow avoided children. During a parent-teacher conference, we discussed with his teacher that he was indifferent toward his classmates. It was then that we decided to go to Manila to see a doctor.”
Click here to read the rest of Danby and Pheo's stories.
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Read on for the rest of Danby and Pheo's stories.
Twinkle said she felt numb and she couldnít hear a thing after the doctor mentioned the words “PDD” and “Autism.” And she would to make an adjustment, each time a therapist or caregiver must leave,
Twinkle sees the hurt Danby feels with each loss, as he lashes out by pinching and hitting. “He has a heart that loves unconditionally,” Twinkle shares, and with the compassion that she and her family give, Danby learns to trust and love once more. Danby remains a child at heart, “and this is a reality that we have to accept,” Twinkle admits. But he has become quite "independent with activities of daily living; he fixes his bed, takes a bath by himself, and eats his meals.” With child-like excitement, Danby regales his family members with stories about his class activities or his “gimmicks.” But for Twinkle, what’s most important is that Danby has learned to make friends, and even laugh with them at the simplest of jokes.
“They just want to be happy and free to be as they are,” reflects Twinkle on Danby and children like him.
“They also want to be significant to others, but in the ways that they can be. And if we believe they can, they will.” Finally, Twinkle says to moms of children with PDD: Accept your child with all your heart and enter his world. Here, you will learn of the most gratifying and enriching experiences.
A gift from God
“Nung nagbubuntis pa lang ako, sabi ko, ëI want a name that means ‘gift from God’,” shares Cherry
Cornell. At 42, she was to be a first time mom, excited and admittedly a little clueless. “Kulang siya ng mga two weeks, kaya inincubator siya,” remembers Cherry, news desk editor and mother to Pheodor.
As the days passed, Pheo’s doctor insisted that Cherry take him to a cardiologist. “At parati niya ring tinitingnan yung palad ng anak ko. Kasi pag may Down Syndrome, may simian crease na tinatawag. Ako naman, hindi ko maintindihan kung bakit tingin siya nang tingin.” So she did her homework, researching and spotting the signs of Down Syndrome in Pheo. “Medyo different sa anak ko is yung eyes niya. Feeling ko parati siyang puyat.”
Pheo’s heart tests were clear, but he was to undergo more challenges. It was after a bout with bronchitis and a fourth pediatrician when Cherry was given the verdict: Pheo has Down Syndrome.
That afternoon, Cherry recalls taking then three-month-old Pheo in her arms, sitting quietly in their living room and crying. Her first thought: “Napaka-bleak ng future for my son. I could not see anything that was shining, beautiful.” She pauses, “Napaka-dramatic, no? Feeling ko Maalaala Mo Kaya!” and laughs.
Click here to read on the rest of Cherry's story.
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Read on for the rest of Cherry's story.
But Cherry doesn’t deny feeling completely miserable and helpless, so much so that even Pheo sensed this. “The same afternoon, binaba ko yung anak ko sa kama tapos iyak lang talaga ako ng iyak. ëGod, why?” I asked.
Then nagising yung anak ko and he looked at me na parang awang-awa siya sa íkin.î From that moment, Cherry decided to stop feeling sorry for herself, and it was Pheo who gave her the much needed push. Pheo, for the first time, rolled over and arched his head like a swan, and smiled at a teary Cherry. “Parang gusto niyang sabihin sa ëkin na ëMommy, kaya ko rin ang kaya ng iba”
It didn't take long for Cherry to recover. She joined the Down Syndrome Association of the Philippines, where she now holds the position of president. Here, she learned about early intervention, and she gathered information on how to provide Pheo with the therapy best suited for him. “Each day is like a miracle; I always see a new development in my son. Pero ang trabaho talaga ng nanay ay uulit-ulitin mo ang lahat hanggang ma-retain sa memory niya. Napakaimpatient kong tao, super! Ito talaga ang test ko, ang anak ko,” she laughs.
Today, Pheo goes to his classes, impressing his teachers with his ability to pick up his lessons quickly, even with the short attention span that Down Syndrome children normally have, beams Cherry.
And in the middle of it all? “Hindi pwedeng hindi mo siya mapansin pag kumakanta siya. Anong gusto niya? Rock music. At nabubuo niya yung mga kanta!”
Now, Cherry says, it just takes some time to really absorb everything. “But when you see the development of the child, you will say na, ‘Oo nga, hindi rin siya ganung ka-different from any regular kid. Dapat kahawakkamay niyo lang whoever your God is. Your child is a gift, and we’re just the stewards.”
PHILIPPINE CEREBRAL PALSY INC.
Address: Sacred Heart St., San Antonio Village, Makati City;
Landline: 895-1786, 897-CARE
E-mail address: info@philippinecerebralpalsy.com
AUTISM SOCIETY PHILIPPINES
Address: Room 307 ML Building, 47 Kamias Road, Quezon City;
Landline: 929-8447;
E-mail address: autismphil@pldtdsl.net;
Website: www.autismsocietyph.org
DOWN SYNDROME ASSOCIATION OF THE PHILIPPINES, INC.
Address: 2nd Floor Agrifi na Bldg., Camia St., corner Meleguas St., Guadalupe Viejo, Rockwell Compound, Makati;
Landline: 895-9642, 895-3606;
Website: www.dsapi.org
E-mail address: dsapi@hotmail.com
Photo from flickr.com
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