Wednesday, August 8, 2018

Relentless advocacy

Today was a full day of moming + advocacy. Two of my favorite things to do. Both light a fire under me. I love learning more about both.  Both frustrate, sometimes confuse me and makes me cry. Too much without a break and I burn out. 

But the state of Special Education makes my heart ache so big I can taste it. I’ve tried to quit caring so much and it’s physically impossible. I’ve seen what good can do- it’s amazing. I’ve seen what bad can do- it’s awful. I can’t unsee it. When I try to forget about it- it wakes me up at night. I hear a whisper, What’s next momma- this is your work. What’s next?

Please note his current favorite shoe selection- MY Tory Burch Flip flops. Sure thing, Grey- wear em. You do you. The perfect show attire for a Town Hall meeting.

Here's the thing about advocacy- there is no Manual on Advocating for Dummies. It depends on the size, culture and workings of your District, it depends on what you are advocating for- what is it that is breaking your heart and needs to change? What is the ask? Most of the time, I don't know what I'm doing. Sometimes I quit for the day or the week, or even two. But then I just keep showing up to do something. Sometimes my somethings feel like they were a waste. Like planting seeds that don't grow. That's an important part of the gig- just keep showing up and doing even if the world doesn't change the second you want it to.

Today was Greyson’s (and mine!) first Town Hall meeting for Andrew Janz who is running for Congress. Many politicians list “Public Education” on their platform, but I never hear them talk about it. I never hear them fight for it. I never see them at functions related to public education, other than ribbon cutting type of things. That needs to change, and it’s my job to help be the change I want to see. I just need to find one person in a position of power who genuinely has the capacity and capability of genuinely caring about public education in action, not just in words. 

Universe, hear my words.

Tonight I went to the first School Board meeting for the 2018/2019 school year. The thing about advocacy, is that you have to plant so many (SO) many. Especially when your District is 75,000 kids big. You can’t sit back and wait for these seeds to bloom- you have to be off planting and watering more seeds. You may have to go A LONG time between blooms. You may not even see blooms in your lifetime, but still you must believe your work is worthy because it is. And sometimes it’s so hard when people don’t care about the thing you care MOST about. It’s hard to sometimes see politics more important than kids. Those are the things that make me cry and want to give up.

I see how huge this system failed Grey and I can't just walk away knowing there are other kids with needs like Grey’s that don’t have anyone to fight for them. One day I want him back in public school, but not when it looks like this. Some people have told me- You can change systems, so just fight for your kids. Here's the thing: I can't do that. The things my boys need are systemic and the things almost every single Special Education student needs. 

I want the basics: Appropriate caseloads for Teachers, SLPs, Occupational Therapists, no computer speech therapy for kids it isn’t appropriate for (ie- most kids with complex communication needs like autism), training for all Teachers, paras and aides on: autism, behavior, communication, inclusion and Assistive technology. I don’t want inclusion/Least Restrictive Environment to be considered an option that can be ignored- it’s a Federal mandate. I want behavior support for students by qualified individuals. Not being trained on behavior, and dealing with behaviors incorrectly can be dangerous and can cause much more harm than good. I want more transition support for students with autism as they advance to the next grade. I don’t want kids with autism segregated in separate buildings from the General Education population. I want professional, safe and knowledgeable people supporting my sons.

Once upon a time (and even now in moments) I sometimes get angry that I have to do this. Jealous of how much easier school is for families who don’t have a special need student. Sad that the things I am fighting for aren't a given. I thought of going to Board meetings as a burden and something that was getting in the way of me trying to live my life. 

But I realized, that this actually IS my life. It's one of the reasons I’m here on earth. It my duty as a parent and it’s my honor as someone madly in love with Greyson and Parker. It’s my honor for your babies too. So here I sit, scattering seeds, trying to stay hopeful about the bloom.

If they praise you, show up and do the work.
If they criticize you, show up and do the work. 
If no one even notices you, just show up and do the work.
Just keep showing up, doing the work, and leading the way.

Lead with passion.
Fuel up with optimism.
Have faith.
Power up with love.
Maintain hope.
Be stubborn.
Fight the good fight.
Refuse to give up. 
Ignore the critics.
Believe in the impossible. 
Show up.
Do the work. (Jon Gordon)


  1. I have a friend who sends out Biblical scriptures every week. I have read the Bible, but I am not one of those people that can quote scripture or know which book of the Bible talks about what. Some of the scriptures my friend sends resonate with me; others, not so much -- but one spoke to me so deeply that I printed it out and put it up on my wall at work: "Be strong and courageous, and do the work. Don't be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you." 1 Chronicles 28:20.

    Keep working, Mama. Do not be afraid or discouraged! XO

  2. Fight for them! I am with you,too.