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Wed, Nov 27, 2013
Philippine Daily Inquirer
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'Don't call us lucky': Special needs parents speak out

"If you want to make sure to say all the right things, research on the child's condition. Be real but positive. Useful advice and information are always helpful," said Jane. "However, don't give advice about something you know nothing or very little about. And, don't be unrealistically positive ('I'm sure he'll grow out of it') or deny he has a condition."

Shared Tina, "Do give encouragement. Do be honest if you have questions about what the child can or cannot do. Every special needs child is different-one child with autism can't talk, while another with the same diagnosis can be high-functioning.

"Do be a shoulder to cry on during those trying times. If you're not a parent of a special needs child, it's okay if you don't know what to say. So just listen and be a friend."

She continued, "But don't give us unsolicited advice on what to do. Kung naisip niyo ang solution na yan, naisip na rin namin yan. As a parent, siyempre gagawin mo lahat para sa anak mo… Do not pity them, either. Special needs children don't need pity, they need understanding. And, don't go around telling other people that so-and-so's child has this condition and just saying how kawawa they are. This kind of sympathy is useless, and you're not respecting their privacy by just throwing around personal details about their lives."

Dahlia added, "Don't ask about her condition, and don't tell other people about it."

As for Mari, she said, "Do assist us if we are having some difficulties like picking up a dropped object, opening doors, pulling chairs or carrying stuff. Smile, say 'hi,' shake the child's hand or give a high five. But don't say that our kids are blessings from God and are special; we disagree, because all kids are special and are blessings from God.

Unknown causes

"We have kids with special needs (not special kids-well, special for us, of course). Never ask the cause of the child's condition; no parent would consciously do something that would harm their children or end up being born with special needs. Most of our kids' conditions have unknown causes. Down syndrome is a genetic aberration with no known cause. And, use politically correct terms (mentally challenged); don't ever use the word 'retard' or 'mongoloid.'"

Mae agreed. "Do mind your language. Use person-first language. For example, instead of saying 'Down syndrome child,' say 'child with Down syndrome.' People with disabilities are people first, with abilities and interests, who happen to have a diagnosis. Don't say 'suffers from,' 'is a victim of,' 'is diseased with' or 'afflicted with.'"

Tracy is not as sensitive. "I don't bother much about do's and don'ts, but I'd appreciate if people don't immediately judge us (in general)."

Ethan was already reading before he turned two. "What I believe a lot of people do not realise is that having autism is not something really negative, just different. When I first found out Ethan was autistic, I was devastated. It's been nine months since his diagnosis, and I've learned that I just can't get enough of him! He impresses me every day with the things he can do.

"He can read long complex sentences. For some reason, he likes to read upside down. He can spell hard words without anyone teaching him. He counts backwards very fast from 100 to 0. He loves to sing and make up his own songs and lyrics. His memory is unbelievable," beamed Jane.

Tina elaborated, "Every special needs child is different. It's not fair to think that the child can or cannot do something just because they share the same diagnosis. You must first understand their capabilities before forming your conclusions."

"They are kindhearted people with dreams of being loved and accepted by many. They just want to live their lives normally. Do not judge them. Give them a chance. Be open to who they are and trust in what they can do," said Dahlia.

Not an easy journey

"Having a special needs child is not an easy journey, but with friendly and compassionate people around us, it makes our journey worth going through, especially when our children are part of an inclusive society free from biases and ridicule," said Obelia.

Tracy added, "I don't want to discount the efforts of the typical parents but ours, I think, is more challenging."

"Being a parent of a special needs child is a very, very big challenge (physically, financially)," admitted Mari. "It is very emotionally draining, the constant worry about the future, especially the future of our son when we are not around anymore. But because of him, we have a whole new perspective of life, a whole new understanding of unconditional love. We constantly need to find ways to advocate for him so that he can achieve his greatness and fullest potential even with the limitations of his condition.

She continued, "My son is our inspiration. He is a perfect soul in an imperfect but temporary body. He makes us strive to be good persons, cherish every moment spent with him, focus on what is really important in life, count every blessing we receive, laud every milestone achieved no matter how small, appreciate things we normally take for granted."

Said Mae, "The quote 'A child with special needs will inspire you to be a special kind of person' rings true for me. It's not a walk in the park, and that applies to parenting in general. But when you mix in special needs, you find the highs are very high and wonderful, but the lows are ultra-low.

"The road seems longer and not as straightforward as with typically developing kids. I'm learning to recognise and celebrate achievements that may seem miniscule or effortless for a typically developing child, but it's considered a milestone for my son. My perspective and priorities in life are forever changed."

What's common among all these stories is that special needs parents are proud of their children, just like any other parent. When we focus on what's the same among us, the world will be a better place to live in. Isn't that everyone's goal?

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