Four more days until part 2 of the IEP meeting that has yet to conclude. For those that don’t know me well, I don’t communicate with many people during these times. I’ve got my main advocacy page and I’m trying to answer questions as they come up, but this isn’t a time where I’m very chatty. I won’t post often, and generally just stay inside my head, thinking through various scenarios, options, etc.
This time is a bit harder because while I know the school can’t and won’t help the boy, which I’ve known for the last 5 years, the dysgraphia side of the remediation is the most misunderstood within our community, and as such, the options to assist are few to none. If I had my dreams come true I’d live in Boston for the summer and let my son attend Landmark’s summer program, and if he needed more I’d stay in Boston for a while, commuting back and forth, with him enrolled at Landmark, until he had what he needed. That’s not on the table though so that remains a dream.
The reality is though that with an older child the stakes are higher and there’s less time on the clock, and the truth is it falls to me and that scares me. I know I am capable, but at night I’m tired after working all day, shuttling him to and from soccer practice two nights a week, cooking dinner for my family, sometimes I have other dyslexia related obligations, and when I don’t have those things I just want to chill, and some of me resents that I need to do more, but I don’t resent it of my son, I resent it of the universe.
After so many years of remediation that was targeted only on his reading, so many years asking the community for answers on dysgraphia and receiving no clear answers or advice, I’m a little angry. No, scratch that, I’m a lot angry. Yes, I’ve now known the answers for a year and a half in one sense (an understanding of dysgraphia) and 1 year in another (where his written expression is grade level wise and the fact that the responsibility falls to be). What I know about myself too is that when I’m overwhelmed, I procrastinate, and I’ve now lost a year and gained nothing for my little man. That’s a harsh pill to swallow.
Dysgraphia is harder to remediate than dyslexia. Maybe my son’s dyslexia is a result of dysteachia, but his dysgraphia is very real. Trying to find real solutions, like with all things within our community, isn’t easy to do, and I’d kill to find a tutor like William Van Cleave who could just take on my son on as a student and teach him what I am afraid I am not up to the task to teach him myself. My plan had been to beg William to take pity on me and teach my son himself, but God had other plans for William and our community is lesser for his absence.
There I said it…I’m afraid I’m not up to the task to teach my son myself. Yes, I’m his person. Yes, I can’t fail him because I’m so determined to not fail him, but I can’t help my fears and anxiety. This child has come so far and now he needs me, his mom, to run the rest of the race not ahead of him clearing the land mines, but alongside him too making sure he gets what he needs when it would seem there’s no one else out there who can.
Within our community, there needs to be greater understanding of dysgraphia and that written expression needs to be taught right alongside reading. “Written English is like a second language with different demands and conventions.” Those words are in Chapter 11 of The Knowledge Gap by Natalie Wexler and they are 100% accurate! We need to do better in our community of raising awareness for dysgraphia and people need to rise to the challenge to fill the gap William left behind and help create people out there who can truly not only teach others about written expression but also work with our kids. We need resources!!!!
This is the stuff that breaks us. Fighting a system who could care less about the creature you adore above all things that breathe rips out your heart over and over again. That’s the God’s honest truth therefore it must all change. Our children deserve so much better; all of our children deserve so much better. And, I want to be just a mom, not a fierce, no nonsense, kicking ass and taking names, in your face advocate, but that’s what I am because our children deserve every ounce of fight we can muster.
And, this consumes my mind.
So, to those who may feel ignored by me, know it’s not intentional. I am an adept negotiator and fighter, and I can take on a lot, but when it comes to my son’s needs and his IEP meetings, because it’s his life in the balance, it takes more of me. In that more, sometimes the only way I can cope is with silence while I think, ponder, worry, rage, plan, strategize, Google, pout, procrastinate, sleep. I like silence; I crave silence sometimes, and I always reemerge on the other side back in the game.
And, I don’t say any of this for sympathy because I don’t want it. My son doesn’t need or want it either. There are some that just deserve an explanation. I am known for saying to others when you are raging, broken, sad, you cannot advocate for others. You have to be in a place where you don’t want to see the whole world burn to be able to lift others up and help them on their journeys.
So, for now I’m silent, but not for long.