Every Now and Then (Confronting Autism) - reposted by requst
This is something I wrote almost 4 years ago when my son was first diagnosed with autism. I've been looking back through 'things' to see where this journey started and where it has led so far. I'll use this space to share some of the places we've been on this journey.
Every now and then, the world turns against you. Things are sailing along real smoothly. Then, you get a nagging feeling in your gut. You stop and listen to the wind. But there is none…
Brendon is two years old. He seems happy. He smiles and giggles a lot, but he never has much to say. He is so strong and independent already, we brag. While he enjoys being around us, he can easily play happily and quietly alone for an hour or more flipping through the pages of his books. He is also very bright. He runs simple errands around the house for Mommy and Daddy. Like his mother, he appreciates neatness and order. He spends his time lining up his toys or putting them away in containers. But he is not just his mother's son, he is also his father's son; and as much as he likes cleaning up, he also enjoys dumping everything out of the containers. His appreciation of order is matched only by his penchant for chaos. He'll talk when he is ready; boys are just a little slower than girls (or so we're told. Brendon is our first child).
Perceived authority - when evaluating the credibility of a message, one of the greatest influences is the credibility of the messenger. If a child says the state of Florida is larger than England, it is not as believable as if you heard it on the evening news, but the fact remains. The truth doesn't change, only the perception of truth. Humans are paradoxically extremely liberal and extremely conservative in their perception of authority. They consider no one credible until proven. However, once proven on one subject, the leap to implicit acceptance of credibility on all subjects seems ludicrously short.
"He should be talking more," everyone tells us, "you should have his hearing checked." We know his hearing is fine, besides, the Doctor says he is doing fine, boys are just a little slower sometimes. "Doctor, we're also concerned about his eating. He is really, REALLY picky and has a hyperactive gag. He'll throw up rather than just spitting food out," we say. "Kids can be picky, but he seems to be thriving. He is growing and gaining weight at an appropriate rate. He's fine. Bring him back in a couple of months."
As the discomfort of the silence ebbs slowly, complacency is replaced by sudden terror. Your apathy has been ripped from your grasp and you experience a feeling not unlike that of falling. You've left the calm and are now staring straight into the eye of a storm of emotions.
"Brendon's hearing turns out to be fine," we smugly divulge to the skeptics. They questioned our ability and challenged our authority as parents. No one knows better than us what our son needs. At least, that is the chest pounding facade that we display for any other primates that venture too close to the glass. But it is too late; we have been infected. The doubt and concern withers our confidence (or is it arrogance) like a virus. But something is there, isn't it? Is it hiding behind the sparkle in Brendon's eyes, or behind the gleam in his smile? Or worse, maybe it has been hiding behind the pride in our hearts. Has that gift to our son been turned against us and against him? The Internet documents numerous demons that could be after our son (sometimes too much information can be as bad as too little). Yesterday, we knew there was nothing wrong. But today… today, we diagnose Brendon with dyslexia, dyspraxia, ADD, ADHD, OCD, and SI disorder. This can't be. We just need to find someone to tell us we were right, Brendon is fine, and the demons are safely confined to our imaginations. Luckily Chrystine works with somebody who specializes in childhood development and he can show us the demons we thought we saw were only shadows.
"PDD-NOS. It's a form of autism," he says. His words feel like a lead weight in my mouth. I slowly force them down my throat, with great difficulty. Now they press down in my stomach, burning like an iron. "It's a permanent neurological disorder and Brendon will have some… limitations."
Water crashes over the bow threatening to sweep you into the deep, cold ocean of the unknown. The solid ground you were standing on is now lurching so much it makes you nauseated. Words and thoughts blur together in a constant deafening thunder and knock you off your feet with gale force.
Limitations? He will never be Leonardo Da Vinci type limitations? Autism - that was Rain Man. Is that Brendon's future, Wheel of Fortune and People's Court? We refuse to accept that. What does autism mean, I don't want a vague diagnosis. I want a quantifiable answer and a quantifiable prognosis. But none is offered.
You feel like the storm has calmed somewhat. Then again, it may just be that you are focused enough that the storm does not distract you. Whichever it is, you know you haven't been desensitized. Your thoughts and emotions, while labored, are more keen and focused than you thought possible. Maybe it just takes true passion to achieve. You believe that is the case. The fear and uncertainty are still there, but they are beaten into submission by will and determination.
We have invested much time and energy in learning about this demon. We have learned its strengths and its weaknesses. We have also learned our own. We know this is not a fight we will win on our own. We have enlisted an army that is strong and knows the demon's weaknesses. And we have God on our side.
Eventually, the storm rages again. But it no longer inspires fear. It now forges your determination. Still, you can't help but recognize the nagging feeling in your gut. You remember the feeling from the calm before the storm. While it is familiar, there is something different. You stop and listen to the wind, again. But, unlike before, you hear it. Then you realize what is different about the nagging feeling in your gut. And instead of bracing for the storm, you raise your sails. The difference in the feeling is faith and love.
For all of us, this battle is personal. Someone we love is a hostage and he will not be left behind. Our confidence has returned. We are emboldened by Brendon's progress every day. He is getting closer to us every day. We will win.
Truth be told, we have already won. We have conquered fear and doubt. No matter where this journey takes us, no matter where it ends, Brendon knows we love him. And our love is permanent and without limitation.