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Yes, I’m a Special Needs Parent

This is part of a new series of posts called “Yes, I am A Special Needs Parent” from special needs parents of all stripes. The idea for it was born after special needs parents came together at BlogHer  for a mini conference. It’s meant to illuminate the different experiences that parents of special needs kids have and the struggles and joys we face. If you are interested in being part of the monthly series, please email Kate Canterbury at theguavaliciouslife at gmail dot com.

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Shane Johnson is a full-time Technician at the Radical Child Development Center/stay-at-home parent, play games well, drinks coffee out of a sippy, and has recently moved to Columbia, Missouri. He blogs about his being a newcomer to Columbia at The COMO Collective. He enjoys correspondence with like-minded parents.

 

 

Waiting for Technology to Catch Up With Kaveh

Our son Kaveh was born in the Spring of 2008. He’s named after a mythological Persian blacksmith who led a popular revolt over a despotic king. We don’t expect him to do the same, but if he does, we’ll cheer him on. As a matter of fact we’ll back him 100% on anything he chooses, within reason.

It’s sort of incredible how social he is. He has no problem embracing new strangers that may offer a hug or to hold him. He passionately expresses his opinion on all things within eyesight. He even offers to share every bite of his food in a “I eat a bite, now it’s your turn” sort of way. He’s sure to let you know when it’s your turn too! When he giggles, there’s pretty much nothing wrong with the world at that moment. My son has this knack for crushing your outside world concerns with slight grin, all of which are richly documented on his Picasaweb site that has filmed his growth from birth.

The richness of his incredibly joyous outlook on life is only tempered by his temporary physical condition and his inability to speak. He’s 3 and half now and not able to walk, crawl, communicate with words, feed, cloth, or bath independently…yet.

My son is one of many children that have global developmental delays. These delays require more attention to detail in the already complicated duty of raising a child. Besides not having a solid full night sleep, save for those few nights when family rescues us, my partner and I have a litany of routines, appointments, and regular interactions with the Medical Industrial Complex. If the frustrations and emotional breakdowns with having a “not typically developing child” weren’t enough, we wage a daily, weekly, and monthly battle to secure services from insurance companies that see all clients as 20 year olds that would rather go to the health food store for remedies rather than services from medical professionals.

Despite my bleak outlook on health care, we have had some fantastic therapists, doctors, nurses, and assistants that have provided a soft landing in an otherwise perilous tumble down the rabbit hole of “diagnosing”. That feeling of not knowing or waiting for some super drug that was going to right the ship made every day a battle.

We’ve survived the first 3 and half years of battle but the struggle is still beautiful. While we appreciate the doctors compliments about how we’re “great parents” what we’d really appreciate is solid answers and a long term prognosis.

Unfortunately, technology is not advanced enough to catch up with our son. As such, we’ll plug along with our therapies, routines, school, playdates, swinging, blowing bubbles, riding in our wagon, playing with water, and generally enjoying each other’s company.

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One Comment
  1. September 21, 2011 | Reply

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