Leading A Life No One Understands

Life in general isn’t easy. We each have our challenges, our triumphs, our wins and losses, our adversities. Good days, bad days, and everything in between is what makes up the journey that is life.

What we in the dyslexia world know is it starts out easy, as it usually does for most children, then gets overwhelmingly hard, for a list of reasons that sum up to adult feelings and special interests that in no way care about the trajectory that is a child’s life.

As the normative parent of a neurodiverse dyslexic child, I willingly chose to stand in harm’s way to try to protect my son, but at the end of the day I couldn’t protect him. I couldn’t be there every second of every day while he had to navigate compulsory education and en loco parentis without me there to defend him. He didn’t have me beside him to stop people from talking to him like he was stupid, or when they set expectations of a bad curriculum that was never based on science before him as their expectation, and the day in day out pressure to withstand those expectations. He didn’t have me with him to tell them no, to back down, or simply that he was worth more than the sum of their disdain.

As an individual he has had only a handful of people in his life who truly understand that reality. I find that fact to be especially tragic.

As his parent I’ve had few who understand the reasoning behind why I fight for him to be truly understood by only a few. What’s hard for me is even within my own family, some applaud us, some do not. One family member called him stupid. One family member said it’s a weakness that needs to not be focused on and his strengths built instead because focusing on this weakness makes him handicapped, a victim.

I’ve faced so called “friends” who think their way is the best way and any other path is a waste of time, ridiculous, and worth shaming.

Few ever truly understand, and in those few, there’s an even smaller group who hold your hand in both the light and the darkness, and through the ups and downs never abandon you.

People who don’t lead this life think we make a big deal out of nothing. They don’t understand what we explain and cannot see the failure of education as something that impacts them on any level. They are blind to the reality our children face as false grades are handed out via “differentiated instruction” that ensures kids graduate every year illiterate.

And, those who don’t understand speak to and of us in voices suffused in pity, and a bless your heart kind of tone, even when they’re related to us.

Because of this we exist alone, apart, separate from others, isolated, siloed. It’s impossible to explain to others what we feel. It’s impossible to explain the pain, the fight, the cost.

This cost to my child has been enormous and is incalculable. The cost to me, his parent, is not just in my mental health, but in my relationships with everyone around me.

I am one of those crazy “science of reading parents” scorned by balanced literacy education leaders. I’m one of those disgusting parents who are misguided, mislead, who just needs to sit down and shut the hell up. I need to learn my place, be grateful, fall at the alter of education and lick its feet clean with my tongue past the point where it’s dry and raw and keep licking because that is my role as worthless parent. I am not an educator so I need my tongue ripped out and my will to defend my son whipped out of me. It doesn’t matter that I have a degree. It doesn’t matter that I have a masters. Nothing about me matters. I am worthless. My womb produced the deficient creature that roams their halls therefore I should know my place and be grateful for what I do get for him, which is less than nothing.

My voice draws ire. My will draws anger. My tenacity draws a big target on my child. My intolerance for the system draws hatred from more than I can count. My determination to not sit in silence and take it has people say my name publicly in anger.

But I exist alone, as does my child. Only a small handful of others, understands me on this level.

I, we, lead a life no one understands.