"We are here to give Greyson his HepB vaccine", the nurse says with a knock at my hospital door. I don't even know what that is or how you get it- but "Ok...come on in." Another knock- "We need to do Greyson's heel prick test. Just a quick blood draw."I felt so ill prepared. "OK....what is this test for? Will it hurt him?"
To circumsize or not. Vaccinate or delay. Is he getting enough breast milk? Should he be sleeping longer than 2 hours at a stretch? Is it bad to take him out in public? I don't want him getting sick. I didn't know the answers to any of the things, and the advice I got from all over contradicted itself.
There are so many decisions involved in raising a child, and the older they get, the more decisions you must make. And just when I thought I had this parenting gig figured out, Greyson stopped developing at the same rate as kids his own age. This took a need for advocacy up to an entirely new level. My level of knowledge on childhood development and speech delays was 0.0. And suddenly I realized that if I needed to properly advocate for my son, I needed to be an expert on ALL of the things. Big complicated things I knew nothing about. Things people go to school for years and years to become an expert on. I wanted some PhD equivalent on autism and communication and behavior child development overnight.
And then school started. And I wanted to become an instant expert on Evidence Based Practices (even though I didn't even know there was such a thing at the time), and teaching, and Speech Therapy, and Legal Matters associated with Special Education, and Disability Law and more. At first I just learned on the job as I went along. I assumed that people in their role wanted what was best for my child, and knew better than me so I let them guide me.
I still believe that most people in schools have the best interest of students in mind. The type of person I am must believe that. Luckily people don't have to work too hard to prove who they are, one way or the other. Maya Angelou said, "When someone shows you who you are, believe them."
But too many times I have encountered situations where resources or personnel needs or classroom needs or a lack of knowledge, or an excess of ego or the need to stay in line with the culture came before the needs of my child. I realized there was a vast difference in understanding of autism and evidence based practises from teacher to teacher in each autism classrooms. I realized that my husband and I were the only people with guaranteed pure intentions wanting nothing other than what our boys need to succeed, based on things the law provides. However, we did not have the knowledge and facts we needed to advocate, which was a problem. How did we know what to ask for, when we didn't even know what the options were, and we also didn't know what our son even needed? How did we know if something was wrong, and more importantly, how did we explain it beyond- My guts says this NO GOOD.
Most parents I've met who I consider incredible advocates, didn't learn about laws, best practice, the Individuals with Disabilities Act, available related service and all facets of their child's disability, as well as all things school culture related until they HAD to. Because something wasn't right- but they weren't sure how to articulate why it wasn't right. That's how I found myself learning about all of those things and more- when Grey was in First Grade. That is when I started reading, researching, and interviewing experts constantly. Even today, as Grey is now a 4th grader, rarely does a day go by when I don't research or read or think about this stuff. (I don't recommend that, but that's how much this is in my blood). After time, and research, and attending Board and budget meetings, I realized that many of the issues I saw in my school, were actually created by the District- they were systemic. After many meetings and attempts at fixes from bottom to top, I realized my advocacy had to be at the District level. I get ignored and/or patronized or disagreed with A LOT. But I keep at it, constantly reminding myself- Intentions don't come truer than mine. All I want is what is best for all children. My inner voice repeats, You are onto something. Something that isn't supposed to be noticed or talked about. And if it was easy, someone would have fixed this decades ago.
Recently an outside review was done on my District. You can read it HERE. And the data showed that the things I have been talking about for years was the truth. And it was validating and heartbreaking to read. My husband and I attended a School District Board meeting to hear the Special Education Department summarize the review. When the summary was over, (almost FOUR hours after the meeting started,) I felt like someone had replaced my stomach with a bowling ball. I thought certainly the summary would share- "We now realize XYZ, which is clearly unacceptable. We need to do better. This is how we will come up with a plan. It won't happen overnight, but it WILL happen." Instead it focused a lot on what they were doing right. Anyone who knows me knows I'm a optimist. I also love to celebrate things going right. But right now, with significant Civil Rights being violated, is NOT a time to celebrate. It's a time for accountability. A time to rebuild. A time for honesty. A time for reflection. It's not a time to celebrate. I felt like they were at a party and I was at a funeral.
So my husband and I began crafting a message, no more than 3 minutes per the rules, to share at the next meeting. We read and researched and wrote and rewrote. And then we showed up. Sometimes all you need to do to change the world is show up. A bunch.
I am so proud of Michael. Imagine how much faster the world would change if these seats were filled with parents who want the same thing. To watch it, click HERE and fast forward to 1 hour, 8 minutes in.
And here are my words. I would be honored if you would watch. My new favorite words are Inclusion starts with me. Ask yourself, how can I use my voice and my circumstances and my environment to fight for inclusion of every form? Inclusion matters, for all kinds of kids. Kids like Parker who have autism. Kids like Coco who don't. When everyone is invited, everyone wins. This is our friend- she goes to therapy with Parker one day a week. She is teaching Parker so much, and Parker is teaching Coco so much too.
Inclusion also matters for people like Guy. An amazing 12 year old with more wisdom than most adults.
Guy uses a speaking device like Greyson. And he made my whole day with this message. It gives me fuel to keep up the fight. But I'm looking for a few good women and men to join me. Advocacy seeks us out, in situations we may originally know nothing about. But our gut feels an ache of needed change. That's the sign that advocacy is choosing us. Will you answer its call?
