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.

Wednesday, September 29, 2010

Snipers in Disguise

Via: francesfarmerrevenge.com
When you are the parent of a child with special needs, the world becomes full of snipers, snipers capable of wounding you with a simple remark, a quick comment or sometimes just a single word. These snipers are often people we know, a doctor with the news of yet another new diagnosis, a teacher with results of some aptitude testing or even a stranger with an off-hand remark. These innocent people who surround us in our lives, unknowingly become empowered with the potent ability to wound us deeply.

Today, it was Kim Leonard, our pretty Special Needs Coordinator. She called to ask me what I wanted to do about Nicholas's MCAS testing.

"What do you mean?" I asked. "Nicholas isn't ready to take an MCAS test."

"I am calling to give you an option," Kim said. "If you don't believe he can manage the test, we can give him a replacement test designed specifically for individuals who may not have the ability to test like other children."

Kim was careful in her explanation, trying hard not to discriminate or force me into a decision I wasn't ready to make.

"I don't understand?" I asked.

"His current teacher will take samples of his work throughout the year to ensure he is continuing to learn, because as you said, he just isn't able to sit through the test." Again her careful wording.

"Wow, I said, "This sounds like something my older son Weston should consider."

Weston has been diagnosed with ADHD and has significant trouble in test-taking environments.

"Oh no!" Kim said, "You should never consider this for Weston!"

"Why not?" I asked.

"Because Weston would not receive a diploma or officially graduate if he chooses this option." And there it was, not such careful wording, this time, the truth.

The bullet is fired into my chest as I realize that Nicholas will never receive an "official" diploma. He will never "officially" graduate.

Via: Inmagine.com
I knew in my heart that Nicholas would probably never become a doctor or lawyer. I just never realized that the diploma he will receive for his many years of study at school, would never be real. Suddenly, I had a vision of Nicholas crossing the high school stage to receive his diploma, only to open it and see a big red line crossed through the document, saying, THIS IS NOT A REAL DIPLOMA!

Kim had become the next sniper. I fought back my tears and struggled to keep my voice from wavering.

"I understand," I said.

"Can we revisit this next year?" I asked, "What if three years from now he IS able to take these tests? Will he still be eligible to receive a real diploma, even though he doesn't take the test now?" My pathetic attempt to keep hope for my son, always hope for Nicholas.

"I don't know," Kim said "But I will get back to you." As I hung up the phone I knew this phone call to me today was not one she wanted to make.

The aftermath of this conversation with Kim made me realize why I wake up each morning feeling nervous, ready and alert. I understand why, in an instant, I am ready to run, duck, hide, roll, hit the dirt or sometimes even fire back. I am waiting for the next sniper to attack. Who will be my next attacker? What will be the chosen artillery: a bullet, a cannonball, a nuclear bomb? I have endured them all. And although my life seems like a series of mortal, life-threatening wounds and long, painful recoveries, it is perhaps by sacrificing my body and my peace of mind, that I am able to endure the hardships of life as a parent of a child with special needs.

So it is that I protect myself with invisible armor. I stand poised and alert, ready for the next shot from the next oblivious attacker. I wonder who it will be this time?


Lou said...

I am wiping away the tears, this post could have been written about my child. Thank you for sharing it, and I understand just how painful it was. It has helped me to know there are other Moms out there, waiting for these 'snipers' to attack, and when they do, we will stand up as we always do, armed and ready.

The Henrys said...

What a perfect way to describe those moments where we feel we have been blind sided.
Just know that you are not alone, you have a team of soldiers to help out.

pr.simpson said...

your words echo our thoughts and feelings it is fantastic to read some one whom can put it down in words. We are from north of Toronto Canada and have a 10 year old son with PWS (UPD). We were able to connect to your blog through a Google alerts we subscribe to. We belong to the association here in Ontario and have met a number of very supportive families who share our different yet inspiring look on life.
Thank you for sharing.
Randy, Paula and Sam

Lisa said...

Thank you all for your support.

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