(Early) Spring Cleaning

 OK, it's not spring here, not even close. It's January, and we're having a classic January inversion (it's the Utah word for winter smog). It's cold, and the air is nasty, and any day now the state legislature is going to start its annual nonsense. But here on the blog, we're cleaned up!

Those of you who are return visitors, welcome back! You may notice that my kids' names have been replaced in both past and current posts with pseudonyms: Wilder for my son, who is now 17 years old, and Cassie for my daughter, who is now 14 years old. I should have made this change years ago to protect their privacy, and to be totally honest the challenge of changing the archive of posts held me back from using this blog much in the last few years. Now, however, I'm done. Those readers who know us personally, please help me out and use their pseudonyms instead of their real names in any comments you would like to add!

I've also pared down the list of links--for now. I'll repopulate it as I update it with more useful and up-to-date links! I've updated and tidied up my profile. I don't think anyone needs to know my favorite books and movies here, and I don't need to share them with the data collection robots on the internet. I'm still on the fence about using my actual face on the blog, but until the trolls come knocking it stays.

Those of you who are new, welcome. (I know, there aren't any of you yet, but a girl can dream.) If you decide to dig into my archive, you will see a pretty big difference between the posts that went up ten years ago and the posts that go up today. I had a very different perspective on life, autism, my kids, and myself back then. Some things, however, remain the same. And I think the contrasts and similarities across the body of this blog may be useful to some readers, especially those who are on the same journey of parenting autistic kids.

If any of you see something I missed or have an update to suggest, please comment!

 *cough* It's dusty in here. And dark.

Are those cobwebs?

Is it really a cobweb if there's still a spider living in it?

When was the last time anyone looked after this blog?

It's been a while. Years, in fact. Apparently, despite the Trump years offering a lot of inspirational outrage, I haven't had much to say. Or more likely, I've been so outraged and overwhelmed that I never got anything organized into words. 

But it's time to come back, I think. I have done a lot of thinking, a lot of reading, and I hope a lot of listening, so I will be writing some of that down for anyone who wants to see it. 

I have some work to do around here first. Gotta get those spiderwebs down. Gotta polish up a few things here and there. Gotta make some edits to better ensure privacy!

Pardon my dust.

How Do We Help Our Kids When They're Scared About Politics?

I saw this post from The Autism Dad in my Twitter feed today, and it really hit home for me. My son, who has almost no expressive language, is able to understand a great deal of what people say. Since the election, my husband and I have been talking politics a lot, and we are often angry about the events unfolding in our country.

My son does NOT like it. He cries and gets very frustrated. We tell him that it's important, that we talk about these things to help protect him, but those words don't make him feel better.

I think next time, I will try some of these words from the post I mentioned above:

I want you to remember a few things.

Regardless of who’s in office, this is our country. Our families, friends and loved ones have fought and died defending it.

It’s more important than ever to stand up for what you believe. Stand up for what you know in your heart is right. Stand up for those who can’t stand up for themselves. Stand up for the kind of future you want for your children.

Teach your kids to be tolerant and accepting of those who may seem different. Rather than judging, show them how our differences can make us stronger. Lead by example because kids need positive role models.

Most importantly, don’t let what’s going on around us, change who we are. This country is much more than just one person in an oval office. This country is an ideal. One person will never be enough to destroy that.

Treat each other with kindness and compassion. The first week of our new leadership has been difficult for many people across the country. Things may get harder before they get better but they will get better.

(From theautismdad.com)

It's still mockery.

Last night, in her Golden Globe acceptance speech, Meryl Streep called out our ableist-elect, Donald Trump, for mocking reporter Serge Kovaleski, who has arthrogryposis.

The ever-classy DT dismissed the critique when he responded (via Twitter, naturally). So the cycle continues: one group of people are trying to hold Trump accountable for his behavior and words while another group of people (including Trump) insist that his behavior does not deserve the reprimand.

Here's Trump's defense of his actions:

For the 100th time, I never 'mocked' a disabled reporter (would never do that) but simply showed him "groveling" when he totally changed a 16 year old story that he had written in order to make me look bad. Just more very dishonest media!

If I understand this defense correctly, DT is suggesting that he was criticizing Kovaleski's behavior and words through an impersonation of him. It doesn't count as mockery because he was not mocking the disability itself, just the person who has the disability.

That defense is bullshit.

DT can criticize reporters all he wants--which he does!--and having a disability does not exempt a reporter from criticism. But this behavior is not simply criticism. When DT "showed him," he imitated the physical limitations that characterize arthrogryposis, not just the words he claims Kovaleski said.

That's mockery. Here's a definition for "mock":

verb (used with object)
1. to attack or treat with ridicule, contempt, or derision.
2. to ridicule by mimicry of action or speech; mimic derisively.
3. to mimic, imitate, or counterfeit.

Trump and his supporters need to stop splitting hairs over this occurrence. I doubt that Trump will: if he owned up to what he did, he'd have to admit that he was wrong, and of course he can't do that. But for anyone else who is still defending this particular behavior, please step back and take a critical look. Put yourself in the position of a person who has this physical condition. Imagine watching the person who will soon become the president of the United States curling up his wrists and waving them in an imitation of you. Think about all the other adults and kids with arthrogryposis you've talked to in your life, all the other people with visible and invisible disabilities you know, and imagine them watching our next president behave like an insensitive school bully. Hell, put yourself in your own position and think about all the individuals with disabilities you know, and imagine how dumbstruck, how wounded, how angry they feel.

Can you stop splitting hairs now?

Intro to Gaslighting

My last post was...optimistic. And 2016 didn't offer me many opportunities to fulfill that optimism. Many of the things I hoped to write about at that time were sidelined by a ferocious hit from the linebacker of life.
But creativity creeps back, and the dismal turn of events in November 2016 has given me many things to think about and write about. Gaslighting is still one of those things, although I plan to write about it on a personal level. In the meantime, I want to share this excellent editorial from Teen Vogue (yes, Teen Vogue) about our misogynist-elect and gaslighting.

Renaissance

Creativity is a funny thing. When you're trying really hard to create one thing, your brain likes to take a side road into other projects and ideas. Lately I've been working on my first novel, which is drafted but is in the midst of a major revision. I've been trying to get the ideas going for that revision, but what starts happening? Ideas popping up for non-fiction writing.

So here I am, back at this blog after four years. Four! It's hard to believe Blogger kept it around. And it's hard to believe the lights will still come on in my head. That's the beauty of personal non-fiction, though--you're always living it.

It has been a long time since I felt ready to talk about the things that our family is going through. (Puberty, for one. Yikes!) I plan to write posts on gaslighting, child care, violence, self-care, humor, and more. We'll be headed to Yosemite National Park in a little over a week--maybe I'll live-blog the journey. Yes, I'm ambitious.

For all of you out there who have tuned into my ramblings, thank you. I hope I can reward your patience.

A dream discarded

When I graduated from my BA program, my dream was to become a book editor. There was at least one problem with that dream, however--I really did not want to live in New York City. No offense intended to New Yorkers: your city is an amazing place. However, being a book editor in New York, I discovered, generally means being poor in New York, and being poor in New York has enough disadvantages that for me they outweighed the attractions of that fair city.

If you want to be a book editor and you don't want to live in New York City, you need to be prepared for the fact that you are not alone. On the rare occasion when an editor job opens up for a university or local publisher, the applicants will be myriad. So that dream of mine died on the vine, and I moved on.

As my life and my career rolled on, I didn't think about my would-be career that often. I edited a few books in my roles of  newspaper section editor, grad student, and freelancer. It's great work, and I am grateful when I have the opportunity to do it.

I suppose, though, that I should be grateful that I did not have my "dream job" as a book editor when I got my son's autism diagnosis, because I probably would have lost it. The demands of caring for my children would have taken precedence over a demanding career. Instead, I've been able to keep my career because I work for an exceptionally flexible company. And every once in a while I get to edit a book for them.

I am reminded of this today because I had a little misunderstanding last week, and I thought I had an opportunity, through my current employer, to work for a publisher on a regular basis. Looking back, I suspect that my mind may have filled in some blanks from a bad connection with things it wanted to hear. It turned out that the opportunity was different--good editing work, but not book editing.

This experience has made me reflect on hopes and dreams. If you have a child with a disability, you know the pain of having to discard the dreams you had for that child. I don't mean that as an insult to our children in any way--they are wonderful, enlightening people who have fascinating futures. Dreams are one of parents' indulgences. They are luxuries fed by the tremendous potential that children represent. Parents of kids with special needs discover quickly that those indulgences are unfair to their children and that acceptance is the generous alternative.

Still, we are all dreamers. We dream about what we want to be when we grow up. We dream about finding the perfect love. And more often than not, we all get disappointed.

I have given up on dreams. It sounds so sad and cruel to say. But most of the time I don't think about this reality with anger, just acceptance.

Instead, I leave myself open to serendipity.

While dreams rarely come true, that doesn't mean the world is not full of magic. It's full of magic that we don't expect--the moment during an October afternoon when a brilliant blue sky breaks through gravid gray and white clouds, and the sun lights up the red and yellow leaves.

We had a moment like that a few weeks ago. It was fall break, and the kids, especially our son, were grouchy from being cooped up at home. We went for a walk to one of my favorite parks--one of its trails leads up onto the mountainside where it connects with the Bonneville Shoreline Trail. My husband chased my daughter, who had decided to run ahead, and I walked with my son. We caught up with them at a bench underneath an enormous scrub oak tree. The ground was littered with shiny brown acorns, which my daughter was collecting in her hands. The four of us sat on the bench, looking out at the splendid view, surrounded by the peace of the mountains. It was magical.

In the place in my heart where dreams once grew, I collect memories like this. And I wait to gather new ones.