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.

Monday, June 29, 2015


OK so I have gotten a little ahead of myself...

When last I left you, I was about to begin my battle with the greatest chess player who ever lived.

Remember him?
I was about to meet with our public school system to discuss Nick's placement for next year.
For reasons I am not allowed to discuss, for the last 3 years, Nick has been enrolled in a neighboring regional public school. Where I am happy to report, he thrived. He matured into a happy, healthy, well-adjusted student. He quickly learned to read and write, and developed meaningful friendships with an entire school community.
And so to assist me in battling the Bobby Fischer of IEP meetings, I sought the counsel of Nick's attorney/advocate.
Perhaps you remember her?
The meeting promised to be a good fight.
But let's face it, Bobby Fischer is a champion. I knew it was going to take more than a vicious dog to bring him down. Winning this battle was unlikely, even with the help of a snipping, snarling and surly sidekick.
I was prepared to take a beating.
What I was NOT prepared for was abandonment and betrayal.
By everyone, including my hired gun.
During the meeting I was scarcely allowed to speak, as the two attorneys, the two sped administrators and an entire room full of educators and specialists gathered to take me down. It was like an IEP lynch mob, assembled for one purpose and one purpose only, to subdue and silence the noncompliant parent.
Amidst the maliciousness and madness, there was one brave soldier willing to support me.
Ms Emily, Nick's sped teacher and faithful friend.
But alone in number, she was quickly overrun and unable to stop my bleeding.
I was disheartened and bloodied, tears streamed uncontrollably down my face, but true to my fighting spirit, I refused to surrender and expressed my anger and disappointment again and again. Until finally...
I was silenced completely
by the bark of my own advocate,
who explained rather viciously, that our additional year at Nick's current school was given "in exchange" for a return to his current school district. I argued that there was no formalized agreement and that this "exchange" was dependent upon this team developing a suitable setting for Nick, which included his need for a substantially separate environment and appropriate peers. None of which existed. 
But my pleas went unanswered as my advocate surged ahead to finalize Nick's plans for the fall.
The meeting ended abruptly.
The room was silent as teachers and specialists struggled to grasp what had happened.
One by one folks exited the conference room overwhelmed by emotion, some of them crying.
I sat stunned and speechless unable to comprehend the brutal beating I had endured.
Now alone in the conference room with the "devil's" advocate and sped director, I stood up from my chair, told them I would never, ever give up on Nicholas and abruptly left the conference room, slamming the door behind me.
I was in a terrible predicament.
I could not fire my backstabbing attorney since she was also in the midst of upcoming discussions to decide the precarious fate of my eldest son, Weston.
I had no options, I felt alone and defeated, like I had failed my son.
To be continued....