Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life. Chris Burke
My late father was quite active with St. Martin de Porres, a school for special children. As a young child, my dad often told me how much smarter these special kids (in comparison to regular kids like myself) are for maximizing their brain potential. Some of us are just plain lazy to actually maximize our true potential. I found that out myself as I got older and wiser.
Earlier today, Philippine Center of Investigative Journalism sent me an email about a three-part report on the dilemmas we face when dealing with ““different” children, or the ““special” and the ““gifted” ones among them.
It is by now de rigueur, and politically correct, to avoid referring to them as ““abnormal” — a word laced with the bias of the majority who are supposed to be ““normal.” Societies in both the developed West and the developing East have since launched programs and services catering to the special needs of these children. However, if a nation has only limited resources, should the community devote more to the special children, or to the gifted? Indeed, how could we know how best to care for them?
But more than just a question of logistics, to the families who nurture and care for these children, many other dilemmas unfold daily Ã¢â‚¬â€œ burden, blessing, joy, pain all the same most of the time. And in between, too, these families have to contend with people who respond differently, sometimes harshly, to children who are “different.”
Here is the first part of a three-part report Part 1 by PCIJ Fellow Charlene C. Tordesillas tells the story of Sammy, the youngest of four siblings but who at 34 remains his family’s baby. Sammy was born with Down Syndrome, a genetic condition caused by the presence of a 24th chromosome.
Bringing Up Sammy
By Charlene C. Tordesillas
Philippine Center for Investigative Journalism
First of Three Parts
THEIR OTHER children were only eight, five, and six years old at the time, but Linda and Sabido de Leon knew it was important for everyone in the family to understand that things were about to change with the baby’s arrival. The doctors themselves had made sure Linda and Sabido realized that soon after Sammy’s birth.
““When I woke up after the anesthesia’s effects wore off, Sammy’s pediatrician approached me and my husband and started talking to us in a very soft voice,” recalls Linda. ““She looked worried, and we could tell there was a problem. She was genuinely concerned, and she told us that Sammy can progress with a lot of help.”
The doctor told the couple that Sammy looked like he had Down Syndrome. Tests would later prove her right. By the time they were headed home, Linda and Sabido had decided to tell the older children that their baby brother would need extra care, and then some. Says Linda: ““My husband and I tried to make them understand how fragile their baby brother was, and that they need to be our helpers in making sure Sammy is well taken care of. We told them that Sammy needs special care and attention.”
Down Syndrome is a genetic condition caused by the presence of a 24th chromosome. Normally, a person receives 23 pairs of chromosomes from each parent, or a total of 46 chromosomes. But someone with DS has an extra chromosome with an extra part, which contains the genetic material carrying certain characteristics that include some degree of mental retardation or cognitive disability and other developmental delays.
The cause of this extra chromosome is unknown, and both the Department of Health and local development pediatricians say that currently, there are no specific data on DS incidence in the Philippines. In general, however, the incidence of DS is one in 800 live births, or at least 1,875 in a population of 1.5 million newborns a year. In November 1976, one of those DS babies turned out to be an otherwise healthy baby boy born to the de Leons.
““I felt like I was in a dream,” says Linda, ““and I wished I would wake up soon. It took a while for it to sink in. (But) my husband and I prayed together and accepted that Sammy is special and is God’s gift to us.”
These days, Sammy remains the baby of the family, and in more ways than one. At 34, he still needs to be supervised in some areas like making friends and communicating, and he is still completely dependent on his mother when it comes to handling money and making decisions. Linda also says, ““There are areas where we see some regression: the basics, which we thought he has already mastered, he tends to forget them every so often. On good days he would remember a lot. It’s the complete opposite on not-so-good days.”
Yet, in large part because he has never been wanting in his family’s support for his development, Sammy has become independent to some extent: he can bathe, dress up, eat, do some arts and crafts, play sports and video games, and jog all by himself. In the last few years, he has even been doing this in an entirely new environment, having followed, with Linda, his Ate Kathrina and Kuya Harold in migrating to the United States.
““Every year, Sammy seems to progress in some aspects,” reports Linda. ““He is getting better and better with social interaction.”
DR. STELLA G. Manalo, who specializes in developmental and behavioral pediatrics, says that the development of a DS child is largely dependent on how well his or her family accepts and handles the situation. The most crucial time to support the child’s mental growth, she adds, is during the first five to six years after birth, and families should understand their role during these years.
““The human brain is like clay,” points out Manalo. ““You have to put work into it at the right time, and shape it and mold it. If not, it will harden and not set right. So it is with children with DS; if we cannot nurture and develop it early on, we cannot optimize their brain’s potential.”
She says that the de Leons’ acceptance of Sammy’s condition is thankfully more of the norm rather than the exception among Filipino families with DS members. ““Most Filipino families easily accept the diagnosis of DS because there is a clear chromosomal marker and evident physical features,” says Manalo. ““It is harder for Filipino families to accept other disabilities.”
She says that the most common mistake parents commit in handling kids with special needs is to spoil them or do everything for them because of “pity.”
““In other words,” she says, ““they are the ones who are treating the child as Ã¢â‚¬Ëœspecial.’ The worse thing to do is to do everything for the child because this will deprive them of learning opportunities.”
At the same time, Manalo admits, ““(There) tends to be denial in terms of the mental retardation. It is only the actual experience of the DS child’s slow learning that eventually helps the family accept the mental retardation part.”
Dolores Cheng, founder of the nongovernmental organization Center for Possibilities, Inc., also observes, ““Not all parents want to be identified that they have a special childÃ¢â‚¬Â¦(Most) parents until now find it hard to accept that their child is special. Tinatago pa rin (They hide that fact).”
Which is sad since parents are the child’s first line of defense, says Cheng, herself a mother of a mentally disabled teenager. She says, ““If the parents are embarrassed by their child, nothing will happen to him or her.”
It’s a view apparently shared by Ma. Redetta E. de la Paz, manager at the Down Syndrome Association of the Philippines (DSAPI). According to de la Paz, a DS child’s family can influence how others will react to him or her. She notes, ““If others see that the family treats the child with DS as normal as possible, then others will follow.”
This is especially important in a society where those who stand out in a crowd attract flack. Cheng says, for instance, that culturally, Filipinos tend to unknowingly ““mistreat” or disrespect” children with special needs, and are prone to stare at those perceived to be ““different,” if not break into nervous laughter.
For children with DS, there are physiological characteristics that mark them as different from the rest: upward slanting eyes, flattened facial features, small or unusually shaped ears, small mouth with protruding tongue, broad hands with short fingers and curved ““pinky” fingers, a small head, a single crease on the palm, and decreased muscle tone at birth. DS kids also have shorter legs and arms in relation to their bodies.
To Cheng, the stares and nervous laughter that these characteristics prompt unintentionally comes off as ““condescending.”
““The good thing is that the mentally challenged child doesn’t get that,” she says, ““but (from) the parent’s perspective, it’s painful.”
SOME STUDIES show that the odds of a mother aged 25 of having a child with DS are about one in 1,400; this increases to approximately one in 350 at age 35, and to about one in 100 at age 40.
Linda says that she was 35 when she got pregnant with Sammy. ““I had flu during my third month but did not take any medicine for it,” she also recounts. ““I also had poor appetite at that time and worked full-time Ã¢â‚¬â€œ minimum of eight hours a day, six days a week.”
““I don’t know if my age at pregnancy and health condition at that time can be attributed to Sammy’s condition,” says Linda, a teacher who sewed dresses on the side, ““but I was asked about those things afterward.”
It helped, however, that she and Sabido, an architect, were already financially comfortable when Sammy came into their lives. At the very least, that meant they could take on several of the extra expenses in bringing up a child with Down Syndrome, such as enrolling him in classes tailored to his needs. And while having three other children called for a considerable balancing act from Sabido and Linda in terms of allocating resources and attention, the three extra pairs of hands were also a plus in a household that soon became a bit busier because of Sammy.
The older de Leon children were not allowed to carry baby Sammy, but they were certainly permitted to play with him as he got older. They were not asked to make lots of adjustments Ã¢â‚¬â€œ only those that they could manage in accordance to their young age. The siblings just had to be a little more independent because Sammy needed more attention, time, and care from their parents.
““I’d lie if I said the first few months were easy,” says Linda. ““They were challenging and really testing. We were all eyes on Sammy. Rearing a special child is no joke. It can be very exhausting. Everything you need to do for him seemed to be twice harder. His motor skills were delayed, so he needed to be dressed, fed, cleaned, etc. until he grew older. His cognitive skills were delayed too, so he needed constant supervision at home Ã¢â‚¬â€œ and especially outside the home.”
This was, after all, a child who seemed lost in his own world and was often unresponsive to instructions. Recalls Kathrina, the second among the de Leon children: ““We were always cutting him some slack. He had a hard time remembering what he could or should not do. He was the only one among us kids who could break a nice piece of china without getting reprimanded.”
The family’s records show that Sammy had his first tooth at age one, sat without support at one year and four months, started crawling at one year and five months, stood up without support at one year and six months, walked unaided at two years old, and toilet trained at four years old. His first intelligible words, such as ““Papa, ““Mama,” and ““Lola,” were at age five. Only much later was he able to dress, eat, and go to the toilet by himself.
Instead of being discouraged by Sammy’s slow development, the de Leons chose to focus on each of his accomplishments, however small these were. Says Linda: ““I remember how we used to become emotional, very grateful to God whenever Sammy had new developments or progress.”
““Every single milestone is such a big achievement for Sammy,” adds Kathrina. ““He felt happy whenever he accomplished something, and that really made us happy too. We do our best to give Sammy a lot of encouragement. Positive reinforcement works for him.”
DETERMINED TO do their best for their youngest child, Linda and Sabido sought advice from the family doctor, as well from relatives and friends whom they knew had knowledge or experience on how to go about rearing children with special needs. By age seven, Sammy was enrolled in a school for special children, where he learned not only the basics, such as the ABCs, counting, sight reading, and colors, but was also able to participate in activities like swimming and basketball, woodshop, and drumming and dancing. In addition, Sammy learned martial arts and taekwondo, and joined the Special Olympics. He even got to play the lead role in an episode of the ABS-CBN program ““Hiraya Manawari.”
These days, Sammy is being home schooled because he is not yet eligible for benefits in the United States. His Ate Kathrina and mother Linda report that he is being taught and re-taught some basic topics with first grade workbooks as reference. ““There are times when he would get all correct answers, and then there are times he would get everything wrong,” says Kathrina. ““It appears his cognitive skills are not consistent. At times, he shows regression.”
Still, Linda says, ““Sammy has matured a little bit, too, although at times, he still wants to be babied. He is still as sweet as ever, and he loves the feeling of being needed. He always tries his best to be helpful.”
Sammy and Linda now live with Kathrina and her family in New York, although they visit Harold in California once in a while. On Christmas Eve in 1984, the family lost the eldest child, Lisa, then 16. Four years later, Sabido also passed away. But Kathrina says it was not until Sammy and Linda joined her household in the States that she began playing the role of part-time mother to her youngest brother.
““That’s because of the changes in circumstances,” says Kathrina. ““I am now a mother myself, and Sammy plays with my son more like as a brother than like an uncle; my mom needs to work and I take care of Sammy then; and Sammy’s mental age is the same age as my son’s chronological age now.” Anyway, she says, she and her mother share in the responsibility of ““raising” Sammy. But when neither mom nor ate is available, a baby sitter for adults with disabilities like Sammy’s steps in. Kathrina says having someone else look after Sammy is a bit steep, but the benefits include her brother learning to be more independent and ““learning English by immersion.”
Sammy now belongs to a group of young men and women who are mentally challenged like him. He does have some difficulties in communicating with his group because his English isn’t that good yet, but his ate says that he and his groupmates have a sibling kind of bonding because they feel they have something in common.
““I think Sammy had some kind of unique relationship with his former classmates back in the Philippines,” says Kathrina. ““However, because of the nature of the activities that is offered here in the United States, which is a lot more conducive to learning how to be independent, Sammy seems more ‘bonded’ with his peers here (than in the Philippines).”
She says that some programs that Sammy is not eligible for yet may later help him to function ““more independently.”
““He will eventually be trained to work,” says Kathrina. ““Perhaps he can even live on his own, separate housing together with some young men who are either mentally or physically challenged as well. That would be a leap but is certainly feasible if he stays here in the United States. That, of course, is if he wants to and if we would feel that he is ready to go live on his own.”
THAT IS one opportunity that is missing here in the Philippines, where many people still believe that people with DS are bound to be always dependent on their family. Yet as the DSAPI points out, ““people with DSÃ¢â‚¬Â¦represent a big potential resource that can be a productive sector of society.”
Both Kathrina and Linda say that special education classes in the Philippines fall short of addressing their students’ need to develop independence. Says Linda: ““For one, they can make the programs more engaging and more social interactive for special children. That would really be very helpful for them. It will encourage those with special needs to be more independent in the long run.”
The good news is that there have been changes in the way Philippine society is starting to see children with DS. According to de la Paz, there is a growing awareness on the condition; the DSAPI itself periodically gives lectures in schools, companies and malls, and makes itself available for print and broadcast interviews. Likewise, various government agencies such as the Department of Education, Department of Social Welfare and Development, National Commission for the Welfare of Disabled Persons, and the Department of Health, have contributed to the information and awareness campaign on DS.
Legislative interventions for DS in the Philippines include Republic Act No. 9442, which outlines the incentives and privileges of disabled persons, as well as protects them from ridicule and vilification.
But the de Leons believe far more should be offered by the government. On Linda’s list are more incentives and up-to-date training for educational and health professionals working with children with DS, among other things.
Kathrina, for her part, says, ““Free seminars for families dealing with disabilities would be great. Early intervention programs are very good to have as well. If families are guided and educated well and children are trained early, they may cope better and progress to the best they can.” Ã¢â‚¬â€œwith additional reporting by Karol Anne M. Ilagan, PCIJ, January 2011
Part 2 comes with a sidebar, a First-Person Narrative by math whiz Fortunato Tacuboy III, who lives by more than just numbers, ““typical interests, ambitions, and fears, just like anybody else.” Very soon, he says he sees himself starting a family with his college sweetheart.
Part 3 by PCIJ Research Director Karol Anne M. Ilagan looks at how poverty is always a big damper on their families’ hopes to provide for their special children’s special needs. The Department of Education reported in 2005 that across the nation, there were 5.5 million children with special needs but that only around 4.8 percent or 264,000 were being provided with appropriate educational services.
Part 3 comes with a sidebar that surveys the various proposed legislation to address the needs of the special and the gifted.