Saturday, March 28, 2015

This April, I want to talk about...

March is ending, and April is beginning. You know what that means. Autism awareness month means lots of posts on all things autism awareness related. There are many examples of why we need this month, but I don't want to talk about Steve Harvey or Kathleen Smith of Tomball, Texas or the "I didn't mean your kid" or their sincere regret that we are so sensitive, that we look for something to be upset about, and that everyone gets offended by something. I don't even want to talk about the stupid ass suggestion that we take the energy directed at [them] and actually put it into our disability because imagine the things we could accomplish for our disability! Partly because it's all been said a million times and I'm tired of repeating myself, partly because there are some bigger/better bloggers dealing with it and I don't have to, but mostly because I have something else I want to talk about.

I want to talk about Jami, the manager at Festus and Crystal City Great Clips who is so patient, so kind, and so lightning quick while cutting Alex's hair.

I want to talk about Matt Gillam, the Assistant Principal at Hillsboro Primary, who's first official interaction with my Goofy One included social stories and role play in their discussion about bus conduct.

I want to talk about Brad Mora, the Principal at Mapaville State School, who's policy is "if he needs it, he will get it." There is nothing in that school that he isn't willing to change, nothing he isn't willing to do to meet his students' needs.

I want to talk about Dr. Link Luttrell, Festus Superintendent, who retweeted the story of the boy who was made to remove his letterman jacket with the hashtag #NotCool.

I want to talk about the Hillsboro McDonald's and Hardee's who have always been willing to do extra for Alex, even though they have no idea he's autistic.

I want to talk about Hillsboro Drug, where no matter what is going on or how the last visit went, they always have a cheerful welcome.

I want to talk about Leslie Payne, the counselor at Hillsboro Elementary, who took time out of her day to talk to me about options for next year. And Rachel Carroll, the Elementary Assistant Principal who knew right off the bat that Goofy would need a special teacher and told me who to request and why- without being asked.

I want to talk about Bonnie Aaron, Assistant Superintendent of the Missouri Schools for the Severely Disabled, who, even though she covers 35 schools, took the time to talk to me about smartboards, gather information, and call me back with suggestions on how to get them.

I want to talk about Becky Ruth, State Representative for District 114.

Becky Ruth is an incredibly kind, approachable, and determined woman. No one will ever know what she did for us, except by my own writing, but she did it anyway because she believed it was right, fair, and necessary.

I contacted her to ask for help getting Alex's school a website. I told her where I'd been and what I was told, I explained that they said it would take an act of legislation. She was determined to fix it, she said, "I WILL get answers on this!" and she did. She made phone calls, she asked questions, she worked hard. Since it was so late in the session, adding a new bill was not an option so she searched for one she could add an amendment to for the State Schools to have websites. Then she contacted the Assistant Commissioner with her request.

The 35 Missouri State Schools for the Severely Disabled, including Alex's school, will each have their own website by the start of the 2015-16 school year.

She didn't leave it at that promise and consider her part done, but followed up. She is getting updates to make sure they fulfill the promise. They have started the process. They have announced their intention to the schools, they have contacted building administrators to ask what they want to see on the site, they are looking at how to add a calendar, they are checking into training staff, they are optimistic that this will be up and running by Fall. She has made sure that I am getting updated as she gets the information.

She didn't do it to get votes, or for publicity because there will be nothing publicly linking her to the sites. No one will know the work she put into making sure our kids and parents have equal access to the same educational tools and resources as their nondisabled peers, no one will know the possibilities she just opened for the schools and for the PTOs of these schools.

Every April, I end up angry over the general public's unwillingness to be aware. This year, these people are the ones I want to see in my newsfeed. These people are the ones who need to be talked about.