I wish I could answer that question with an easy simple sentence, but I can’t. Before my son was diagnosed with Tourette’s and all it’s friends, I can honestly say I didn’t give too much thought to special needs children. It just wasn’t in my limited radar. They were there, and I would see them sometimes, but it wasn’t a major part of my world. And then a funny thing happened. It became my world.
My family became very different then. Every moment, every action, I saw the label. I saw my son as different, as “not normal”. I was in denial for a long time. Not because of him, but because my mind, my heart, it couldn’t accept what was right before my eyes.
Over time, this changed. My son’s disabilities were with me every waking moment. I tried to hide from it, to run away from it, but they were there, saying “Help me Daddy”. And I’ve tried. For the longest time I thought if I just treated him like every other normal child, maybe things would change. But they didn’t. I had to take a strong look at myself before I could accept him for who he was. I had to, and still have to, realize that it doesn’t matter what others think. It doesn’t matter, at all. Let them judge, let them stare. It’s reality.
First and foremost, I am a husband and a father. My family isn’t the perfect Norman Rockwell family that so many dream of. I know I did for a long time, but it’s just not in the cards. But what I have is something better. I have something real. Something so crazy and imperfect that it makes the most sense in the world. I get to see something some can never see. I see human emotion in it’s pure, truest form.
Love, anger, sadness, happiness, jealousy, hope. It’s all there. My son has the ability to display all of these. But it’s more than emotions. It’s like they are colors. Beautiful, radiant colors, that shine the brightest in his soul.
Conversations I had with people in the past used to consist of my latest TV show craze, whether it was X-Files, Lost, or Game of Thrones. I would talk about music, some politics, but for the most part I was a very self-centered person. My world was MY world and I felt people were crazy for not liking what I liked. Then a little thing became a big thing, and before I knew it, I was fully immersed in a cause. It didn’t happen overnight. It built up for a long time, and I didn’t even realize it.
When my son started having numerous problems at his old school, I figured he was just a misfit of sorts and he liked causing trouble. But it continued, and I knew something was off, but I didn’t know what. Eventually, I found out. He had Tourette’s Syndrome. And ADHD. And Sensory Processing Disorder. And OCD. And Anxiety. And Depression. He wasn’t even in double digits yet, and he had all of this to look forward to. I didn’t have the slightest clue how to help him, and I’ll be honest, sometimes I still don’t.
I don’t expect perfection. Let’s get that on the table right now. I accept mistakes, if they are made with the right intentions. But when the “old school” denied my son services that should have been his by federal law, I was pissed off. When I fully realized the scope of it all, I was well beyond pissed off. So I researched everything. Schools. The DOE. The Government. Common Core. Rodel. Smarter Balanced Assessments. The Charter School Network. What I found was a clear path, visible to those who follow the steps.
It’s the oldest game in the world. Survival of the fittest. Cavemen did it, and those in power do it now. They don’t want to relinquish their power and they will hold onto it as long as they can. Those who get in their way are pushed aside. But something new and bizarre is happening in the power landscape. The Power People are getting together and banding together. They are forcing their will on the people through coercion and specific techniques. And it all begins with education.
We think we know what’s going on, but there are depths and levels of which most people don’t have a clue. It’s a game of chess, and their pieces have been placed in a potential checkmate position for a long time.
Nice post. I too had to fight tooth and nail when my daughter was first dx. Now my fight is over standardized testing which hurts all kids but especially our kids who will never think in a way that these tests want them to. My daughter is outside the box and always will be and I think that’s perfect for her.