(First of two parts)
The cases of babies born with Down syndrome are increasing, mirroring the growing share of births to older mothers and improvements in the survival of babies with the chromosomal condition.
Autism cases are escalating, too, and no one is sure whether the higher figures come from an actual rise or from earlier, better diagnoses. Worth noting is that autism is not one disorder, but a spectrum of close-knit syndromes with overlapping signs. The three most common autism spectrum disorders (ASD) are autism, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger’s Syndrome (high-functioning).
Some popular TV shows have recurring characters with special needs: Becky, the feisty cheerleader with Down syndrome from “Glee”; and Max Braverman, a boy with Asperger’s from “Parenthood.” In “Parenthood,” particularly, the stories shed some light on what special needs parents go through, and why special children behave the way they do.
Thirty-six-year-old Tina’s son JJ, six, has autism and goes to a mainstream school. “Autism is a spectrum, so you would have those who have severe autism (major issues with sensory processing, cannot talk, cannot manage self) and those with high functioning autism (can talk, cognitively the same or even more advanced than “normal” people, but would have social impairments). Both types fall under one diagnosis: autism.
“JJ would only ‘lose’ the diagnosis when he overcomes the social deficits. Autistic people would also have sensory processing disorder, which influences their behavior. JJ has auditory sensitivities, so the sound of a hand dryer can alarm him, and sometimes, can trigger a meltdown.
“This is something that many people don’t understand—that they misbehave because they encountered an ‘assault’ from the environment. It’s more difficult for nonverbal individuals because they can’t express their discomfort. Akala ng ibang tao they misbehave dahil hindi tinuruan ng magulang, pero in reality, something in the environment might have bothered them or triggered any of their sensitivities (hearing, smell, taste, etc.).”
Jane, 38, has two sons. Her eldest, Ethan, has autism. “We are lucky that Ethan’s condition is not obvious enough for people to think he is a special child. Ethan is only turning three, so he is not expected to follow certain behaviors. It might be more obvious when he gets older.”
Ethan goes to a mainstream school. “At school, they got him new sets of schoolbooks because they felt his skills were beyond those of his classmates. He is using books for six-year-olds. All his classmates are three years old and above, making him the youngest in class. He was supposed to be in the toddler class, but they decided to have him join the nursery class. We feel blessed to have him,” said Jane.
Sandra, nine, has Down syndrome. Her mother Obelia, 48, sends her to an inclusive school. “It is a special needs school where they do activities with the children in the mainstream program,” Obelia explained.
Iris, 33, was diagnosed with borderline autism when she was eight years old. Said her sister Dahlia, 37: “She ‘knows’ that she is not normal. This is quite frustrating for her because of her need to be seen and accepted as normal, but she will never be. Growing up, she suffered a lot of emotional pain from classmates and relatives who were mean and quite abusive of her.
“Iris went to a special school in Forbes before, but my mom pulled her out because the other students there didn’t ‘look’ normal at all. My sister looks completely normal and knows that she has autism. We moved her to a regular school, but in a batch three years below her age so she can cope with the lessons,” shared Dahlia.
Mae, 35, has three children. Her eldest, Jon, six, has Down syndrome. “He is in Kindergarten, in a regular classroom of 24 kids. There is one other in his class who needs some kind of therapy, but the other 22 are typically developing.
“He is slowly adjusting to the bigger class size and the new expectations and routine at his new school. He still gets speech and language therapy and occupational therapy in school a few times per week so he is pulled out of the classroom for around 20 minutes every other day,” she explained.
Support and accommodations
“Being in the regular classroom is not without support and accommodations such as having a visual schedule, allowing him a little more time to finish his work or follow a direction and having the special education teacher sit in with him for 15 minutes each day to help him focus on his seatwork. The special education teacher also consults with the regular education teacher to make sure he is doing well and to address any needs or issues that may arise,” Mae said.
“Jon’s teacher tells me that it has been a joy having him in her class, and is amazed to see the acceptance the class is showing toward my son,” she continued. “She says they are learning compassion by living it, not because they are being lectured about it. They see him struggle sometimes with things, like not being able to swing himself on the swing or being overwhelmed with writing words or clicking on the wrong mouse button and getting frustrated with the computer.
“Nearby classmates willingly help to the best of their ability or get the teacher’s attention to help him. He has been learning to cope, too, and ask for help when he needs it.”
Christian’s son Nathan, seven, has autism and goes to a special needs school.
Keona, eight, has Down syndrome and Karla, seven, has PDD-NOS. Said their mom Tracy, 36, “Keona does not attend school but is taking home-based therapy sessions. Karla is in Grade 1 at a mainstream school. I continue to pray that she’ll cope with her peers.”
Mari, 41, takes Gerard, five, her son with Down syndrome, to a special needs school that focuses on self-help, behavior management, social, communication, motor and cognitive skills.
Chances are you know a special needs parent, but are at a loss on what to say or do. Whether you just want to be a sensitive stranger or show that you’re her friend for the long haul, here are some questions that you may have been hesitant to ask and what the families of special needs children want you to know.
Variations of “God only gives special children to special parents” make special needs parents uneasy, because it pressures them to hide any frustration or struggles they may be experiencing.
Is it okay to ask?
So what can people do or say if they see a child with a condition? Is it okay to ask, “What’s his condition?” or should they wait for you to bring it up? Does the explaining tire you out/offend you?
Some families with special needs children don’t mind being asked, some would gauge the person’s sincerity, while others do not want to be asked at all.
“If somebody asked about Ethan, I would not be offended or irritated. I’d prefer they ask rather than they make their own assumptions. It also gives me the opportunity to explain what a wonderful person he is and that he has a special gift,” said Jane. “I have never been offended by anyone’s comments so far, nor has anyone ever said anything offensive about Ethan. But if someone ever dared, there will definitely be trouble.”
Obelia feels the same: “I would welcome people asking about my daughter’s condition because it is a sign that they are open about learning more about her.” But she said that staring or making unsolicited remarks like, “Uy suwerte daw yang may ganyang anak,” are no-nos.
Mae, too, doesn’t mind explaining if the situation calls for it. “I’m all for educating, but I usually don’t say anything unless I’m asked about it. People will ask however they want to. Some will just stare,” she said.
“When he was three, I took him to the zoo and another little boy was looking at him. I heard him ask his mom, ‘Why does he have his tongue out all the time?’ His mom hushed him, and I didn’t want to take the time to explain. I just smiled at them and walked on,” Mae said.
“Recently, we were eating out when a man came to our table and asked how old Jon was. He smiled and said, ‘My daughter is almost 30,’ and pointed in her direction. She had Down syndrome, too. That made me smile.”
She added, “It’s only when people use the ‘r’ word (see www.r-word.org) descriptively, in a hurtful manner or even jokingly that I get very offended.”
“It would depend on how it was asked,” qualified Christian. “If it was gossip-like, I would avoid engaging, of course. But if I felt the person was actually trying to understand and not be ignorant about special needs, I would accommodate the question.”
Mari agreed, “It depends on how we are asked (no judgmental or condescending tone, should be seeking a genuine understanding of the child’s condition). It also depends on the parents’ attitude. Some are open and frank about their child’s condition, some are very defensive and would not want to discuss it, especially with strangers. And, don’t stare (it’s rude anyway to do so). Ask if we need any assistance or help when we are struggling with some things. Smile or nod (it goes a long way).”
Tina said, “First, do not give judgmental stares. It can be hurtful to be stared at. Second, if you are in a position to help, please do. A special needs child having a meltdown can be overwhelming for the parent, so a bit of a helping hand (minus the judging stares and asking too many questions) is appreciated.”
She added, “If you’re a stranger, you should not ask about the child’s condition without being prepared to listen to the parent share other facts about the child. It’s not just a condition; we are talking about a person with a condition. A special needs child is a person first, so if you’re a well-meaning stranger, be prepared to listen and to understand what the parent has to explain and say. And, don’t patronize. I don’t need to explain to people if they are just chismoso. However, if they are genuinely concerned, then I am okay with giving them a short awareness lecture.”
“The best advice I can give is always to mind your own business and to treat every human being with respect and acceptance. No staring, whispering or anything that will make one feel uncomfortable. People like my sister are very sensitive, and those affect her a great deal,” said Dahlia.
Tracy noted: “Strangers can just ignore, but sometimes their attention is caught especially when Keona makes baby sounds. It’s okay to be curious, but giving us a judgmental stare would be very hurtful. They can smile… we never know what a smile can bring to the person we smile at. Of course I’d appreciate a question rather than an unsolicited comment from Mars. If a person asks, that means he is open to understanding the truth about my kid.
“I have been asked by innocent kids, ‘What’s wrong with her?’ and I’m okay with that. The question gives me a chance to properly explain, on the level of their understanding, what’s going on. If adults would ask the same question, I think it’s fine,” Tracy said.
“But better not make comments like ‘Suwerte yan’ (So now our kids are lucky charms? And yours is doomed?), ‘God will always be with you kasi blah blah blah’ (and only sometimes with you?) or ‘You will be more blessed kasi you need it more’ (so now God is biased, huh?),” Tracy said. “I’m sure people are just trying to be nice, but I’m not stupid. I don’t like it so I hope they just don’t try to be counselors! I often encounter these know-it-alls. I’d rather talk about facts: medical conditions, NOT superstitions and stuff that’s supposed to make me feel better.”
What’s the best thing friends can say or do if they are unsure about your child’s condition and you haven’t explicitly told them yet?
“Whenever you have this type of feeling about a child/person, the best bet is always to be kind and caring. You can never go wrong with that. This is a lot better than asking about the condition, etc… No family member wants to talk about it. They just want their loved one to be accepted and treated well,” said Dahlia.
Said Mae: “Please avoid the ‘r’ word. Avoid labeling or guessing. Just offer support and the reassurance of a helping hand.”
“The best thing a friend can do if I haven’t explained my child’s condition is to value my privacy,” explained Tina. “There are certain people whom I have not told about my child simply because they don’t matter to me. If it doesn’t matter whether they know or not, then why bother telling them? I only tell my closest friends and family, selected people whom I feel will understand what we’re going through and will be supportive of us.”
Obelia added, “Questions I would prefer that people ask me are: ‘How is Sandra? How is she in school? How is her health?’ As for what they could do, if my friend has children of the same age as my daughter, I would be glad if she were invited to play dates. It’s a rarity.”
Mari agreed. “Inquire about the child in general, her/his interests, favorite activities, health, etc.”
But Tracy doesn’t mind curious inquiries: “They can ask about the condition of my kids if they want to know.”
Be inclusive, informed
What was the most helpful thing someone has done for you/your family in relation to dealing with someone with special needs?
Said Mae: “In the first few months, it was helpful for me to receive the book ‘Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.’ In my own time, I was able to read about other moms’ experiences and feelings as I struggled with my own upon unexpectedly becoming a mother of a child with special needs. It helped me heal and move forward slowly instead of being paralyzed by fear of the future.”
“The best is to invite and include her in anything. She feels loved and important when people do this,” said Dahlia of her sister Iris.
“Allow my children to be just like any other kid, with some consideration,” said Tracy.
Jane pointed out: “The best thing a relative of mine did that I really appreciated was when he did his own research about ASD. He admitted that he recognizes Ethan’s symptoms, but at the same time he kept positive by focusing on his strengths. He even gave me an article about activities Ethan and I can do to improve his communication skills which I found so helpful.
“Occasionally, he sends me articles about stem cell treatment or videos about other children with autism which I like because it reminds me that we are not alone, and we are blessed because Ethan’s condition is mild.”
She added, “Relatives have been in denial that Ethan has a condition. I guess it is because they know very little about ASD. Other relatives remain ignorant and keep telling me to change my doctor and that there’s nothing wrong with Ethan, yet they know nothing about autism. They also keep telling me I’m letting the doctors and therapists manipulate me because they just want to make money.”
“The best thing a stranger ever did for me was at church, where my son was… being himself (couldn’t sit still, shouting/insisting on going to the choir until I gave him my house keys),” said Christian. “At the end of Mass, a lady went over, looked Nathan in the eye and said, ‘Goodbye,’ with the biggest smile.
“Knowing that Nathan would still be caught up in his world, she walked toward me with that same welcoming smile and said ‘Goodbye.’ That time, I was ‘wearing my horse blinders’ kasi super ingay na ni Nathan and the last thing I wanted to see was people staring. Her smile was a breath of fresh air talaga.”
Christian elaborated on what the lady did right: “She was already aware of special needs. Instead of being judgmental or even fearful of Nathan’s condition, she simply decided to be friendly. She talked to Nathan, understanding that he was ‘in there’ and could understand her, and not an alien who needed an interpreter mom to tell people ‘he’s in there.’”
Obelia added, “I appreciate my friends who follow our journey and share our experiences with others, like when my friends repost my messages or notes sharing my daughter’s milestones or when we are treated unfairly.”