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.

Thursday, July 2, 2015


I would love to tell you that I recovered quickly from my IEP crucifixion but unfortunately I did not.

It stung, but good.

I wallowed in my helplessness, assuming the role of victim with unusual ease. I experienced a steady decline toward self destruction by beginning to doubt myself and my ability to advocate for my son. My restless thoughts turned toward Nicholas and Alex and their important friendship. What would they do without each other? I felt like I had failed them both. It was as if I was a captive prisoner held against my will in an evil tower of a wicked witch. I was at the mercy of a dark and unstoppable force.

But before the red sand slid out of the hour glass, I received a text from Ms Emily, Nick's teacher and sole supporter at my meeting from hell. She explained that "not being heard" was a terrible thing but that I should never doubt my voice and ability to be a strong advocate for Nicholas.

That small, kind and simple gesture was like a tiny rock breaking the thick glass that held me captive. It was good medicine. Her message stirred something within me. Her words were the cold, hard slap I needed to awaken me from my temporary addiction to worthless self-pity.

I reviewed my options. It was time for a new game plan.

I could fire my advocate and hire a new one, but as I mentioned before, we were at a critical cross road with Weston awaiting a meeting to discuss his placement for next year.

I could refuse Nick's placement, order the pitbull to follow my wishes and head to trial, but that would result in thousands of dollars being placed directly into her pocket with no guarantee that we would win.

I could refuse Nick's placement and head to trial by myself. That however would take much time and preparation on my part, with once again no guarantee that we would win. It would also inhibited my ability to prepare a new school for Nick's arrival.

Or I could accept defeat.

I could begin the process of educating a new school on Nick's uniqueness. Giving us an opportunity once again to promote change. We would have the opportunity to start again, building another unique inclusion model at a new public school whose focus will be to remove from the world, more of the stigma and apathy associated with educating kids diagnosed with special needs.

This sounded right to me.

For the first time in many months, I felt positive and powerful, gone was the victim mentality, replaced now with a fiery desire to do things right.  I figured if a new school was to be our fate, then it would happen in a manner that was best for Nicholas....or I would die trying.

I created a list of demands for the school to consider which included:

Hiring a PWS consultant to educate staff on food access prevention.

Scheduling field trips for Nicholas to visit his previous elementary school friends.

Meeting with the school principal and sped director to discuss the possibility of developing a real and meaningful inclusion program.

Presenting first to staff, then to students, guidelines for helping them relate better to Nicholas.

Participating in a new transition meeting, this one without Nick's advocate.

I am happy to report that my requests were all granted.

I believe I have learned something valuable from this experience.

For me, working harder does not always guarantee the best results. In fact, when things seem difficult and it feels like no matter how hard I try, there is steadfast resistance with no forward movement, I have learned that this is my cue to stop and evaluate whether it is time to surrender to the Universe and accept my fate by acknowledging that the world has other more important plans for me. Once I submit to relinquishing control of my future; it is as if a dam opens wide, a powerful energy is released with an accompanying rush of positive forward momentum.

This however, requires a great deal of trust on my part, an almost blind faith in fate, an unwavering belief that there is a greater force at work, operating in the best interest of myself and others.

The question is......can I surrender to it?

Not exactly my greatest strength, but I am trying.....