Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Tuesday, May 26, 2015


If you are the parent of a child diagnosed with special needs,

the quality of education your child receives in the public school environment

is directly proportional to how good you are at playing chess.

It's about strategy.

It's about playing aggressively.

It's about understanding the unique movement of each of the pieces,

And how they work together.

But before you play, you better acknowledge the indisputable fact

that you are indeed playing a game.

And the more adept you are at maneuvering, the more support and services your child will receive.

In chess, the key to winning is first to assess the competence of your opponent.

In this case, it is a fierce one, a ruthless master, skilled in the art of merciless annihilation and all-out guerrilla warfare.

In fact, it is a lot like playing chess with Bobby Fischer.

The name of the game is intimidation,

achieved easily through misdirection and manipulation.

It is very unlikely that you are going to beat one of the greatest chess players who ever lived.

In fact, let's face it, it's going to be a blood bath.

And the blood that's spilled is going to be yours.....and lots of it.

Along with your sweat, your sleep, your tears and all of your money.

You can hire someone to play chess for you.

But there is no guarantee that they are going to win.

In fact, it will probably do nothing more than cost you more sweat, sleep, tears and money.

It is a never-ending battle to see just how much money the school is willing to pay for the "free" and appropriate education of your child. And the more disabled your child is, the less likely the school will be to accommodate them, since special needs supports and services are often accompanied by some pretty hefty price tags.

It is a fight for tax dollars and federal funds.

The prevailing dogma being that school funds can be used more efficiently in meeting the greater needs of the "healthy many" rather than the costly needs of the "disabled few"

Better to spend money building things like football fields and administrative offices than to accommodate out-of-district placements for medically complex children. Who, more often than not, will be shoved into some windowless closet of a classroom with little supervision and severe behaviorally-challenged children increasing the probability of verbal, physical or in the severest cases, even sexual abuse.

The law unfortunately supports this madness as the child must fail in the public school environment first before a new placement is considered

As parents of children diagnosed with special needs we hold our breaths,

and pray we play the game well enough to keep our children safe.

There are other things we pray our children achieve,
like making academic progress and building social success.
But those victories can be even more 
illusive, feeling a lot like winning the lottery.
It happens, but to a rare few.
For the last three years we have been one of these fortunate families. Nicholas won the special needs lottery and experienced tremendous social and academic success. He was fully and whole-heartedly embraced by his entire school community. He matured into a happy, well-adjusted student, a child like any other.
Today however, we do not have agreement with the school district about where Nicholas will be educated next year. He is transitioning out of the elementary school and will begin his journey into a new middle school program.
The question is....................where?
The Chess Players, Friedrich Moritz August Retzsch
  Once again I am forced to play chess with a formidable opponent
and pray that my game is good enough.

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