Wednesday, June 15, 2011

Nothing Else Matters.....

It's been suggested that Amanda and I write a book on our techniques and experiences in raising our son.  My typical response is "those who need to read it would quit after the first chapter."  I've decided to put my "first chapter ideas" into a blog entry.  A recent chat with a coworker again spurred my thinking.  Tell me what you think.  Would you read further?

As devastating as a diagnosis can be, there is an equally critical realization that parents much come to when told they have a "special child".  Nothing else matters.  The criticality of embracing this truth can not be understated.  Everything in the child's world has deviated from "the plan".  The majority of the child's future now hinges on the level at which his/her parents change "their plan" to match.  I've come to consider this the most critical determining factor in a "special child's" success in leveraging their strengths and overcoming their deficits. 

There's no way to make a "special child" affordable.  They cost everything and then some.  As an engineer, I make a good living.  It doesn't matter.  Therapy bills put us on the brink of bankruptcy.  I have great health insurance.  Even the co-payments are oppressive.  This "unaffordability" goes way beyond money.  Amanda effectively home-schools on top of his public schooling and her teaching career.  I change hats from engineer to chef/housekeeper in the evenings.  Still it's never quite enough to meet his educational needs.

Hobbies and interests must be rearranged and even replaced.  Some hobbies contribute to the child's education and social development.   More popular/mainstream hobbies fall by the wayside in favor of those with "real value".  In my case, competition shooting gave way to meteorology, astronomy, etc.  Traditional thinking on discipline must be replaced with creative, tailored methods.  Our children must be taught to function successfully in society to the maximum extent of their abilities.  The process is grueling and often downright gut wrenching. 

Even more "unfair" than the price parents must pay is that required of siblings.  Parents walk the tightrope of treating each child according to his/her abilities while striving to avoid the appearance of favoritism or leniency.  Those with "special siblings" must grow up fast.  Responsibilities thrust upon them are saved until well into adulthood for most.  The cost is every bit as high for them as for the parents.  Their "plan" has been preempted as well.

Unfortunately for the "special child" the price of enabling them for maximum utilization of their strengths is as optional as it is high.  Nothing strong-arms appropriate choices onto parents and siblings.  These sacrifices are made willingly or not at all.  The price is higher than any "outsider" can imagine.  In like fashion, the stakes are higher than even the parents understand.  Without this understanding and sacrificial, daily choices that benefit the "special child", any book I would write would be of no more use than those in print today.


  1. I would suppose that each family has individual challenges that are unique to the personalities involved. However, one thing we all need to know is that we are not alone. That may be a bigger benefit to your book than information shared. I would read your book just because you wrote it. I certainly do not comprehend what you and Amanda and your family are experiencing. Not a clue, other than what I gather here. And that is just a slight impression from the surface.

  2. The challenges change. The commitment level is the unifying principal. I'm not sure we need more "awareness". We're neck deep in it.

    The greatest thing I've seen lacking has been parents who "suck it up" and do what needs to be done. I see many who do, from all socio-economic groups. Unfortunately, the "better off" the family, the greater the delusion that the childs needs can timeshare with career, social standing, hobbies, etc.