Monday, January 30, 2017

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.


Monday, January 9, 2017

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?

Tuesday, December 20, 2016

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.

Friday, June 3, 2016


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.

Tuesday, October 30, 2012

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.

Tuesday, October 9, 2012

Dear Mr. Stubbs (an open letter)

Dear Mr. Stubbs:

As I write this letter at 10 PM, my son is screaming. He's making wordless, tortured sounds like a wounded animal. We don't know what is wrong—he can't tell us—but we believe that he's disoriented because of the medication he takes in order to go to sleep. That's our best guess because this happens fairly often. The medication makes him fall asleep consistently, but some nights seem to be very hard on him.

I'm writing to you tonight because my husband Mike has mentioned that you and he don't see eye to eye on certain things, which is understandable, but he mentioned that you called him "selfish." Mike has many flaws along with many wonderful qualities; selfishness is not one of his flaws. Indeed, he is an extremely generous, selfless person. I would like help you, his supervisor, see what I see.

I understand that you have to make hundreds of decisions every day. While the decisions you make about scheduling and workloads often impact me directly, I understand that you have to make the best decisions based on many factors, and my family's health and happiness is only one of them.

Still, I want you to understand that when Mike advocates for his day to end as soon as he can make it end, he isn't just advocating for himself. He's advocating for me, because it's very difficult for one adult to cook and serve a meal to two non-verbal children, one of whom hates to sit down for a meal. He's advocating for his son, who gets anxious when his father gets home late, even though the only way he can express his anxiety is with screaming or hitting. He's advocating for his daughter, who adores playing with her father, and who sometimes gets sidelined when her brother's needs take too much of one parent's attention.

My son has stopped screaming now. It's 10:15 PM and it's finally quiet. We'll be heading to bed soon so that Mike can be up and ready to give his best to his job, as he does every day, before he comes home to give what's left to his family.

I don't expect this letter to change your decisions as a supervisor, but I hope that it will help you understand why you sometimes get pushback from Mike. He's not being selfish—he's just trying to give his family what we need.

Thursday, July 21, 2011

How dare they?

This article, Dressing down for GQ -, contains the details about a highly offensive language in a web article posted at I went to see the article itself,here, and discovered that they had changed the offensive text, but there's no note and certainly no apology.
As one woman quoted in the Boston Herald put it, "How dare they?" How dare they say that someone with Down Syndrome is "ruined"? The rest of the GQ article is snarky, but no where else did they sink to the level of insulting people with intellectual disabilities. Of course, I must consider that they may have whitewashed other parts of the article as well.