Sunday, January 15, 2012

The Wonderful World of Autism



Neurodevelopmental Pediatricians, special education, therapy sessions, Persons with Disability ids, these were some of the words I first heard when I learned that I have two kids with autism.





Sidney and Red were born full term.I never had problems with both when they were born. Both were breastfed. They fed,wailed, laughed like any other babies and had no problems with psychomotor abilities. They were not even picky eaters.They love pasta, fruits and veggies especially Sidney who enjoys munching carrots and potatoes. They look normal, even good looking as what most people have told me. It seemed nothing could be wrong until they became toddlers.





When Sidney turned 2 years old her speech was delayed. Though she was able to catch up just like the other kids, it seemed something was not right. Her words were advanced for her age and she  learned to read and speak fluently in English even before she went to school. She also loved to read and tinker with computers that her ability to absorb words, places and phrases including online games were faster compared to other kids even way beyond her age.




With Red it was different. His vocabulary was limited until now though that had improved because he goes to a special school. His music is his language as he hums, sings like a jazz singer and never off key. Before he does this when he was agitated or nervous like when we visit his pediatrician or had his head stitched due to a playing accident. Now he sings for no reason at all. While at play, on his way to school or when he wants you to follow him sing with his new learned tune.

Odd looks. Cold stares. Annoyed glares. Angry neighbors and sometimes misplaced sympathy.These were the reactions we get when I take them to the mall or for a short stroll even before I 've learned about their disability. Perhaps one cannot find fault in that. Autism to some maybe a less interesting subject until one gets hit with it. One may take the blow hard, others may go into denial thinking it may just be a virus, a disease that got one infected and can be cured by a shot.

We have gotten used to it.We have grown accustomed to such questions like "Where did it come from?""Why you let it happened twice?" worst "what have you been doing when you were pregnant?" thinking maybe that knowing the answers can make a difference.

There must be a reason to all of these that most of us may not be capable of understanding and that there will always be questions, lots of it. But if one continue living this life with such questions, one may not live long enough  to that day to finds the answers.

Doors, windows opened. Opportunities knocked. Interviews. Stories. Insights shared. Learning to look at the world differently, enjoying the simple things in life, seizing those moments. Like Sidney's saying "I love you " out of nowhere and Red's constant act of wiping your tears, uncontrollably shed. Such are these milestones, making you smile and think things may not be that bad after all and eventually will turn better, if you choose to look at it that way.

I have come to realize that there was so much that I have gained when I accepted them as they are and learned to live my life day by day. Respect, admiration, understanding even from total strangers now turned into friends. Meeting parents and relatives who share the same struggles like I do. Teachers, gifted beings who take care of my kids when they are in school, giving them the same tenderness and caring especially at times when they need it. Becoming a member of an advocacy which continuously look for ways to make this world a more forgiving place, knowing that now I am no longer alone.

I hope that one day, more people would stop, listen and care to know more,  this wonderful world of Autism.






5 comments:

  1. Sidney: Kids of her own age? Maybe even kids beyond her age, e.g. yours truly. Even I can't take some of the things she's been doing.

    Somehow, Red has been able to learn some of the songs I always sing. So maybe it won't be that surprising if the time comes and he suddenly sings something like kundimans and standards, hehe.

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  2. Wow, this is so inspiring, Sarah, and a very well-written post too.  I am sorry to hear that you and your family have had to put up with people being rude in the past or just ignorant.  And regarding what are the potential environmental or genetic causes of autism, even the field of research/biomedical science as a whole with our best and brightest scientific minds remains ignorant too.  You've truly done nothing wrong and no one has any good knowledge what event or genetics might cause autism.  

    Have you ever seen the movie "Temple Grandin"?  If you haven't, I think you would find it very inspiring.  It is about a girl with autism who was really fixated on cows on a cattle ranch and really had a mind for math/engineering/architecture, and she devoted her life to this singular pursuit and devised important humane cattle transport systems for slaughter houses, became famous and earned a Ph.D., is a full professor at Colorado State University, had a movie made about her, and now speaks regularly and is a major advocate for autistic people.  Here are her websites:

    http://www.colostate.edu/templegrandin/

    http://www.templegrandin.com/

    I think that many autistic children have some phenomenal gifts that, as you mentioned with Sidney and Red, may be well beyond the reach of the rest of us people who characterize ourselves as "average" or "normal".  In fact they might really possess the skills, radically different ways of thinking "outside the box", and God-given gifts that will some day help science or engineering to solve humanity's most difficult hardest problems. 

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  3. Sarah mallari bucuJuly 6, 2012 at 5:53 PM

    Thank you so much for reading my posts and for always leaving an inspiring message. I read about Temple Grandin. I am a member of Autism Society of the Philippines and they advocated about this movie but I have not watched it yet. One thing for sure though, I cannot help but be emotional once I watch it.

    The Philippines is a very young country and still have a long way to go when it comes to autism and other special abilities.      But were are very positive we are slowly getting there, enlightening other people bit by bit. And thank you for being one of those people who understand.

    Blessings to you and your family !

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  4. Thank you, Sarah!  I am sure that the experience of watching the movie will be emotional for you, and you are right, you should just take your time and wait and watch it some time when you feel ready.  But I can guarantee you it is a very inspirational, heart-warming, and "feel good" movie with a happy ending -- not that this necessarily makes it an experience you're ready for now. My wife and I were really awed and inspired by it. 

    I think that wherever you go in the world, be it Philippines, US, UK, Australia, Thailand, etc., there will be people who have not yet been enlightened about various medical conditions ranging anything from autism and other special needs abilities to cancer, miscarriage etc.  Probably this stems from a combination of ignorance, folklore and hearsay, and fear of the unknown. One thing that worries me in particular is the popular belief by a lot of people here in the US that certain childhood vaccinations cause autism.  This belief has no scientific basis at all and can lead to people not immunizing their kids against serious infectious diseases like mumps that can kill or that can make an adolescent sterile, and/or could lead a parent to have some guilt feelings that they did something wrong by taking the risk of immunizing, which is  not true.  You are absolutely right, though, that enlightening other people bit by bit will gradually overcome.  

    Blessings to you and your lovely family, too! Continue to seize the day and recognize those doors and windows opening and opportunities knocking!

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  5. You might also find this interesting...

    http://www.grandin.com/inc/visual.thinking.mind.autistic.person.html

    How does visual thinking work in the mind of a person with autism? A personal accountby Temple Grandin Department of Animal Sciences, Colorado State University, Fort Collins, CO 80523, USA Philosophical Transactions of the Royal Society(2009) 364, 1437-1442doi: 10.1098/rstb.2008.0297

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