Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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.




Friday, August 5, 2016

Smote


Please forgive my absence
I was engaged in a fierce but worthy battle

A battle to free Nicholas from an unhealthy school environment.

After many fiery discussions with
the SPED coordinator,
the SPED director
the principal
the superintendent of schools 
and finally,
the Massachusetts State Board of Education.




Nicholas is OUT of our local public school.

I DID IT


I found the courage
to stand up to:

aggression

intimidation

betrayal

lies and deceipt

To provide my son with
his indisputable right to an appropriate education.

In fact,
the entire SPED department of our local school
has either resigned or been terminated.
A new director has been hired.
AGAIN
The 6th one so far
But hopefully a very good one, this time

HALLELUJAH


While I feel the thrill of a rewarding victory

From a battle hard-fought and won.

I am fatigued from the physical demand of constant combat.
I feel a mixture of emotion


There is Joy


Joy, that my son will finally receive the environment, peers and community
he so humbly and righteously deserves.

But also there is a sense of loneliness


A feeling of having weathered an evil that takes its toll on the soul

Of enduring an undescribable hardship
that separates you from those whom you love


It is like trying to break free from the familiarity of a dark, deadly forest,
wrought with danger and difficulty

Scratched and wounded.
I summon an unknown strength from within 
to free myself 
from the last tangled and thorny thicket.


I tumble to the earth
scalded
by a powerful sunshine
that burns my pale skin.

I am released.


But relinquishing a sword that has served me well
does not provide me with comfort.


I must abandon the warrior spirit,
adopt a peaceful persona, 
welcome the new road
that brilliantly beckons

A rejuvenating pathway
that feels familiar and welcoming
perhaps heaven-sent.

I must reacquaint myself with the warmth of the sun
breathe in the air
of a healthy new freedom
for Nicholas and me.