“Why do you only talk about dyslexia?”
So far I’ve been asked that question twice.
The first time I was asked that question I had tagged along with my family on a trip to Austin specifically to see a particular parent advocate when she asked me that question. I was more than a bit shocked and in my head was like, well, yes, tonight I do because I drove here specifically to see you and talk about dyslexia.
The second time was by a co-worker who frequently went to lunch with me and in frustration asked me that question. She was a bit rude about it, but I took her point loud and clear. It wasn’t a subject that impacted her life and while she was sympathetic, she really wanted me to shut up about it. I was enormously embarrassed and have never discussed dyslexia with her again.
I don’t talk about dyslexia all of the time because of this blog or the parent advocacy work I am committed to, but I do those things and talk about dyslexia all of the time because it consumes my life.
And why does it consume my life? Because it has to.
My son needs me to learn as much as possible and to fight as hard as I can for him. No one else is going to fight for his right to an education except for his father and I. No one is going to stand up and defend him, show that he needs accommodations and services, show that he’s struggling, show how intelligent he really is except for us.
The system will never provide to my child what he needs and if we don’t stand up and demand it then he’ll never get it. That is the reality of the situation, and that reality is all consuming.
Maybe it’s my personality that makes it all consuming, but I honestly feel as though it’s not me, but what the situation calls for.
We have never ONCE expected or thought the schools would EVER do right by our son. EVER! We went into this journey with a school having failed our son and allowing him at barely 7 years old to fall flat on his face. If, for $18,000 / year in tuition a top ranked private school would do that, then what on earth was public school going to allow? We envisioned far worse, but we choose, made the conscious decision that it would never be up to anyone other than us.
We would fight for his rights. We would hire as many tutors as necessary to teach him what the schools wouldn’t teach him. We’d attend lectures and trainings and learn as much as we could in order to support him, first and foremost, always and forever.
How is that not all consuming? How can it not be?
Yet, as I learn I feel compelled to share what I learn and to try to help others along their own paths.
Why do I feel compelled? Because this journey SUCKS!
(I have far more colloquial things I could say, but my mother would hurt me. Love you, mom!)
This is one of the loneliest journeys I have ever personally taken, but it is also one of the most emotionally treacherous.
It’s devastating as a parent to feel alone, to be the David facing off against the behemoth sized Goliath that is a school system. They’re so adept at the lies and manipulations and they expect the parents to cower. They’re banking on it really, and they can easily bank on it. They can use unlimited tax payer dollars to keep your measly threat of a law suit drowned in paper forever if they wish. They’re the giant bully on the block and they take everyone’s lunch money then beat you for good measure knowing you still have to come back tomorrow for yet more punishment.
You walk into a school meeting ALONE and sit at a table highly outnumbered and do what? You ask for your child to be helped and what do they do? They drown you in processes and paperwork and timelines, etc.
I remember the very first school meeting I attended and the Vice Principal LIED to my face and I believed her hook line and sinker because I didn’t know any better. Once I learned that what she said was an egregious lie there was nothing I could do about it. She’s sweet and savvy and intelligent and convincing and I bought it. Me! Of all people!!!
I have to constantly read, constantly research, constantly study and constantly talk to other people to learn even more than I already know. I have to digest the information and then talk and research some more. I have to scheme and plot and plan. I have to question.
So yes, that is all consuming.
I don’t feel like my knowledge should be kept in a vacuum and I feel that I can share in a meaningful way, so I do what I can. I way over share on my Facebook pages supporting parents because I find a ton of quality information to share with parents. I respond to messages, emails and texts as fast as I can, and when my schedule allows me to do so I meet with parents too. And yes, that is all consuming, but I’m ok with that.
Yet, I do have two full time jobs and one is as a paid employee of a company that provides me with a good career, and the other job, which is the most important job in the universe, is being the mom my son needs me to be.
And in being a mom that means preparing him meals, talking about his day, working through his homework, being open with him about my fight for him and being fully there and present in his dyslexia and how that impacts his day, among the litany of other conversations and moments of life.
But more than anything else, it’s all consuming because I find this world completely and utterly fascinating. I love the science of how the brain works and following the research as they learn new things every day. I hate the politics but it is a necessary evil. This evil requires knowledge and knowledge is attained through study, but even what must be studied can be fascinating.
I love reading the books and watching the videos. I love exploring ideas and hypotheses and discussing them with my husband and my dyslexia sisters.
Few understand me. I can probably count on one hand those that understand why I do what I do, why I fight for my son like I do, why I feel compelled as I do.
But at the end of it all, this is a civil rights issue and our children are the ones being denied their civil liberties. Our children are the ones denied access to the knowledge they need because the educational establishment refuses to acknowledge and educate them. Our children are failed every single day by a system meant to do nothing more than teach them, and that is the very sad reality we’re faced with.
And that is all consuming.
But, for me it has to be.
I cannot sit idly by and let this injustice served onto our children every single day, go quietly by, and it is in that determination, that I am consumed, not just for my child, but for all children.
Our children deserve nothing less from us.
So, yes, all I talk about is dyslexia.
Why aren’t you?