Thursday, September 20, 2018

Making Bud's vote count

Bud's been coming with me to the voting booth since he was born. Throughout his life, I've scheduled my trips to the polls to make sure that he could join me. I've talked to him about voting, about why we vote, and about who and what I vote for. As I do with other values I hold, I have tried to instill in Bud the importance of active, thoughtful citizenship.

When Bud was 16, we went to the polls and on the way out, a volunteer gave him a "Future Voter" sticker, which he wore proudly.

It stopped me in my tracks. I realized that in less than two years, Bud would be 18 and old enough to vote, but I knew nothing about the laws governing disability and voting. I understood that at 18, Bud would not likely have the same understanding of the issues as a typical 18 year old. I also knew that the outcome of elections would affect his life as much as - and, arguably, even more than - anyone else's. I started to research.

I learned that in my state, there are no restrictions that would limit Bud's ability to vote. Last year, as his eighteenth birthday approached, we started talking about voting. We talked about political parties. I created a series of cards that explained, in terms Bud could understand, the differences between Democrats and Republicans. We went through them issue by issue, and Bud identified which perspective matched his beliefs in each area. From there, he decided to affiliate with one party over the other.

A week after he turned 18, we went to town hall and he became a registered voter in what was a surprisingly quick and easy process. And then we waited for the next election.

As it turned out, it was a town election without many contested races. It seemed like it would be a good trial run, but on the day of the election, we were inundated with the kind of snowstorm that made it impossible to get out of the driveway. Bud's first voting experience would have to wait.

This month, our state held its primary election. Again, not many races were contested, but we talked about the one that was, and discussed the differences between the candidates who were running. Bud decided who to vote for. We got a sample ballot and he practiced filling it out. I researched our state's laws about people who needed assistance with voting, and printed them out, so that if Bud needed assistance and any election officials needed clarification, I would be able to provide it.

We were ready.

We were ready, that is, up until it was time to leave the house on election day. From there, the plan unraveled. I won't go into detail, except to say that Bud was overwhelmed and it became clear that forcing the issue in the moment would not be good for anyone. So, on primary day, Brian and I voted, and Bud had ice cream instead.

Then I went home and researched some more. I learned that though the rules in our state regarding absentee voting are restrictive, having a disability that limits your ability to vote in person is a legitimate reason to request an absentee ballot. The next day, Bud and I filled out his request form and we put it in the mail. Then I went to amazon and ordered a roll of "I Voted" stickers, which will cover us for the next 300 elections.

Once again, we are ready. Bring on the midterms.

And one other note - I share all of this with Bud's permission, and remind you that when it comes to sharing information about his life, Bud's vote is the only one that counts.

Saturday, April 14, 2018

Age: appropriate

Sometimes it feels like I log in here to write the same things over and over. Here I go again. And let me be clear: I post this with Bud's permission.

The other day, Bud told me that he was sad because someone told him that Blues Clues was for babies. Bud loves Blues Clues. He also loves being a young adult. He was trying to work out how both things could be true.

I assured Bud that the person who told him that Blues Clues was for babies was wrong, and that it was perfectly okay for him to tell them so. I explained that it is possible to be too young to watch something, but it is not possible to be too old to watch something. I told him that he is the only person who gets to decide what he loves, and that people need to respect his passions without judging them. I told him that it's great to find new things that he loves, but that never means that he needs to stop loving the old things that he loves.

For the love of God, people, stop shaming our kids for having "juvenile" interests. Respect who they are. The end. I have never once felt judged for incessantly posting my love missives to Mister Rogers on Facebook. No one has ever suggested that I should have moved on from the show I fell in love with when I was three. Why should people's reaction to Bud be any different?

Bud loves Blues Clues. It's a show about friendship, and kindness, and family, and problem solving, and creativity, and curiosity. Which of those things should Bud have outgrown?

If you're still not convinced, please read (or re-read) Lydia Wayman's essay "Growing Sideways."

Then sit down in your thinking chair and think.

Think.

Think.

Tuesday, April 10, 2018

Lessons learned

As I've said a hundred times already, I am reluctant to write about Bud's life now, as everything I write seems like an invasion of his privacy. So I apologize that I'm writing this with a complete lack of context, but it was either post without context or post not at all.

It's about education and, specifically, about school and, specifically, about special ed staff.

If you ever for a single moment feel as if you are working with "educators" who seem to be approaching your son or daughter as a series of behaviors in the shape of a child, RUN.

Run fast.

Run fast, and run as far as you can.

Run until you find an educator who sees your child as full, whole person, with talent and ability and challenges and complexity, just as any full, whole person has. Then link arms and hold on tight, because you're both going to be in for a hell of a fight.

Friday, March 16, 2018

So, why haven't you written that book?

It's a question I've been hearing for at least eight years: "So, why haven't you written that book?"

Back in 2010, when Bud was ten years old, I wrote a series of posts about a presentation I gave to his fourth grade class, trying to help them understand autism and trying to help them understand Bud. A Hairdryer Kid in a Toaster-Brained World and the series of posts that followed took on a life of their own, and I found my blog suddenly getting thousands of hits every day - and at some points, every hour. I got lots of feedback, attention, and email.

Early on, people encouraged me to turn the series into a book, and I was offered assistance from people who had the power to make it happen. I was overwhelmed, but flattered, so I agreed.

For about a year, I tried to make it happen. I shaped book proposals from different angles and for different audiences, but none of them felt right.

I tried writing A Hairdryer Kid in a Toaster Brained World: A Kids' Guide to Understanding Autism, and was well on my way when I was horrified to realize that I was directing the book to everybody EXCEPT kids with autism.

I scrapped it and started over.

I've been scrapping it and starting over for the past eight years.

It's only been recently - starting, maybe, sometime around November 8, 2016 - that I have figured out why.

I wouldn't want to read a book about what it feels like to be a woman that was written by a man.

I wouldn't want to read a book about what it feels like to be gay that was written by someone who is straight.

I wouldn't want to read a book about what it feels like to be black that was written by someone who is white.

I wouldn't want to read a book about what it feels like to be transgender that was written by someone who is cisgender.

So, I don't want to write a book about what it feels like to be autistic, because I am neurotypical.

There are many amazingly talented autistic writers out there who are eager to write about their lives, their experiences, and their truths. Because I'm neurotypical, I have more access than they do, which is precisely why I need to step aside.

The "Hairdryer Kid" series is out there on the blog - because, as we all know, any old yahoo with a computer and an internet connection can write a blog.

But the books on being autistic - the ones with real insight, real credibility, and real information that those of us raising autistic children need to read - they need to be written by autistic people.

Tuesday, February 27, 2018

If a blog post falls in the forest

Saturated.

That's the word that comes to mind: saturated.

There is just so much - so much to do, so much to consider, so much to discuss, so much to fight for, so much to fight against, so much to worry about, so much to plan, so much to act on, so damned much. I'm saturated. The sponge is filled to capacity. I've started to leak.

Blogging used to save me when I felt saturated. It let me slow down and let some of what was in my mind seep on to the page, where I could shape it, reframe it, and share it. Then my friends picked it up, flipped it over, and helped me see it from a different angle. And in the process, I found that some space had cleared. Some portions of the sponge had been gently and carefully wrung, and I found myself able to do, consider, discuss, and all the rest, much more effectively.

But blogging has changed as social media has become more pervasive. In the old days, we made the rounds of our favorite blogs, stopping in on our friends' virtual front porches and leaving a supportive comment or a much needed laugh. These days, we flash a thumbs up as we fly by each other on Facebook. We read thumbnails instead of pieces, and we use the extra time to wage battle with the Russian bots. My friends only know if I've posted on the blog if Facebook tells them that I have. And, increasingly, Facebook will only tell them that I have if I'm willing to shoot them some money for the effort.

Even when people do find me through Facebook, the comment section - the slow and easy conversation we used to have here on the blog itself - has all but disappeared. The comments appear on Facebook, or, more often, somebody shares a post on their own page, and the comments unfold there, where I can't see them, can't engage with them, can't learn from them. And so, the Facebook numbers game - the shares, the likes, the "seen by" totals - they become the end game, and they add to the saturation. Instead of easing the frenzy, they feed it.

The lightning pace with which things are now shared and argued and refuted and celebrated and re-posted - it's exhausting. It has made me so fearful of shining the spotlight in the wrong place - of sharing too much of Bud's life, or of sharing the wrong things, in a way that they will take on a life of their own and the damage will be done before I've had a chance to reign it in, unpublish, and reconsider. The ubiquitous nature of social media has taken the joy out of blogging for me, and has replaced it with a passel of anxiety.

But I'm saturated. I need to get it out - to slow down and shape and think and reframe and share. So I'm going to do it, and I'm not going to tell anybody on Facebook about it. I'm just going to set up here on my porch with some iced coffee and freshly baked cookies, and if you happen to wander by, I hope you'll stop in.

Perhaps I'll find that without the boost of social media, I'm alone here in the forest - a tree that falls without anyone there to hear it. And then, I'll have some different decisions to make.

But right now, I'm feeling just a little less saturated than I was when I began writing this post, and that, at least, is a start.