Showing posts with label children with disability. Show all posts
Showing posts with label children with disability. Show all posts

Wednesday, August 22, 2012

Pouring My Heart Out

Here they are again.

The look.
The headshake.
Sometimes even point-blank critics.

I know he’s noisy. Speaks too loud. Asks too many questions. Comments incessantly.
If only you knew of the many things going on inside that cute head of his. Thoughts after thoughts after thoughts. Flashing by with the speed of light. Some days worse than others. He can’t shut them down or even slow them, down no matter how hard he tries.

And I know he wanders around. Sometimes aimlessly. Touches things (he knows some are absolutely forbidden, but on his worst days, he couldn’t help but try anyway). He laughs out loud for ungodly reasons. He’s impulsive. Rigid. Irritable. Easily loses his temper and throws one too many fits. Nags endlessly. You’d get tired out just reading about it.

If only you knew what he feels in his arms and legs that forces him to squirm and move about. The impulses telling him how he HAD TO touch or smell. The craving for sensory inputs to help him figure where his hands and feet are or how his body is positioned.

And boy I know how he looks like. Endearing. Sweet. Loveable. So much that if you spend only a short time with him (on his average days), how his mama & papa get all beaten up and frustrated would be far beyond you.

And I know the way we speak to him might seem somewhat terrible.
It’s because we don’t always know if today’s his good, average, or bad day. On good days a normal tone would do. On average days a firm tone, repetition and a pinch of extra patience should do. But on a bad day, a stern tone, repetition and a handful of extra strong patience rarely does it. On an extremely bad day, I can only hope it would quickly pass with me remaining willful to see another day, clinging desperately on dear sanity.

The signs aren’t always clear. A good day can turn into a bad dream in the blink of an eye. An insanely bad day, well, it doesn’t usually turn good... But various things did happen and sometimes we got the mercy of passing a really bad day peacefully and victoriously, where everyone learnt their lessons and accepted each other’s shortcomings.

We frequently and earnestly pray that the days we didn’t pass peacefully nor victoriously, wouldn’t leave too damaging scars.

And we (parents of neuro-atypical children) know that it wasn’t because of bad parenting. Nor lack of discipline or proper training. Nor can it be controlled or subdued. Therapy, diet, medication, are some of the things that might help. Or maybe not.
We just try our best and pray that miracles would happen. That he would outgrow it. Or would function better eventually. Or learns to cope and manages to live with his difficulties. Instead of getting crashed and burnt in the long, long struggles of growing up, developing and maturing.

But I know that you don’t know that. ALL of that. Or any of that.

Because if you do, we probably wouldn’t get judged this much.

With this post I’m hoping that in the future, whenever you encounter any of the above scenes, you would know better what (not) to say or do.


“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.”


Ephesians 4:29

Friday, November 18, 2011

That thing called AD(H)D


Due to the nature of this post, I decided to write it in English. In this way I'm hoping to get a broader scope of readers, get feedbacks also from non-Indonesian-speaking parents of AD(H)D children out there, and will hopefully be able to share with other moms outside my daily communities.

I realize that not many of you are familiar with this disorder, but I feel the need to be more knowledgeable and therefore spread the awareness and give some information about this disorder, although I'm not even properly well-informed about this matter.

Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD) is a complex developmental disorder. Wikipedia gives this definition:

Attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD) is a developmental disorder. It is primarily characterized by "the co-existence of attentional problems and hyperactivity, with each behavior occurring infrequently alone" and symptoms starting before seven years of age.

Visit these pages for more info, because this post can't possibly satisfy your curiosity or answer all your questions:
http://www.add-adhdinfo.com/
http://www.adhd-clarity.com/

Or click here if you want to see some of the help videos on ADD/ADHD.

If you wonder whether or not your child has ADD/ADHD, visit this nice blog of moms with ADHD children, or this post for brief information. But I urge you to find a psychologist and/or a pediatrician who has expertise about ADD, ADHD and Autistic Spectrum, because not all psychologist or doctors or paediatrician are licensed to make the diagnosis or even familiar enough with the matter.

After you get all the basic infos, here's some misjudgements that I want to straighten (these remarks are summarized from the help videos and other resources above):

1. ADD/ADHD is NOT the result of bad parenting, it is caused by a dysfunction in the brain.

2. Children cannot be disciplined into not having ADHD, because it is a biological condition.

3. Children with ADD/ADHD cannot choose when to have their attention focused well, and cannot make their hyperactivity disappear by simply willing it to go away. It is not something that they can control, no matter how hard they try to.
This doesn't mean that you can't discipline them at all, but there are times when their behaviour is being caused by their brain condition.

4. Children with ADD/ADHD are often misjudged of having no empathy, morals, obedience, and the parents are often held condemned for being so themselves.

5. ADD/ADHD is not caused by poor diet or too much media exposure (TV, video games, computers, etc), but poor diet or too much media exposure can overstimulate children with ADD/ADHD and worsen the condition.

6. Children with ADD/ADHD are frequently accused of not trying, of being lazy and not being a good kid. Teachers get angry at them, classmates don’t like them or even treat them disrespectfully. (I quote this from Dr. James Dobson’s book, The New Strong Willed Child, page 241.)



Why am I writing about this?


Because my funny, smart, strong-willed and loveable nearly-4-year-old son has recently been suspected of having AD(H)D and Developmental Coordination Disorder.

This issue is still a huge, tangled, ball of messy lines of thoughts, burdens, and anxiety for us. We are still struggling to cope and deal with it, and still trying to find the most suitable solution and formula to handle this matter for the sake of our beloved son, and us, too.

The road ahead is going to be a long and winding journey, and we surely will have our ups and downs, but thankfully, we know the One who has been and is still carrying us, continuously: our Mighty Lord Jesus.

His grace WILL be sufficient, as it has always been.
May God's name be glorified in all this.


I look up to the mountains—

does my help come from there?

My help comes from the LORD,

who made heaven and earth!

He will not let you stumble;

the one who watches over you will not slumber.

Indeed, he who watches over Israel

never slumbers or sleeps.

The LORD himself watches over you!

The LORD stands beside you as your protective shade.

The sun will not harm you by day,

nor the moon at night.

The LORD keeps you from all harm

and watches over your life.

The LORD keeps watch over you as you come and go,

both now and forever.

PSALM 121