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.



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


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.