International Night is For Suckers (Of Which I Am One)

Oh, you guys, I just remembered that I totally forgot to tell you about International Night at my kids elementary school. We have been at that school for four years and had never been because it is one of those evening activities that seem like a nightmare for any kids, let alone MY three kids.

For weeks now, fliers have been coming home asking if we want to participate by bringing a food dish or set up a table celebrating our origins, but I was all, fuuuuuuuccckkk that, because in my head I was already plotting ways to get out of going.

(I did briefly consider bringing green jello with shredded carrots in it to signify that I grew up in Utah, but then I figured that only people who live in Utah would get the joke, so why bother.)

Anyway, Sam destroyed my avoidance policy by being all gung ho about going this year and showing me the poster he worked on about India, so last Friday evening I packed up the munchkins, took a deep breath, talked to my kids about FOR THE LOVE OF GOD STAY WITH THE GROUP! and we headed off for International Night.

The first thing we did was see Jack’s poster about South Africa, where they play golf.

Jack made the golf ball and the cartoon.

Then we wandered down the hall where we passed Quinn’s class project.

He says he did the top row of hand prints.

It was here that I lost my head for a minute and told Sam he could go hang out with his friends. We did not see him again for a long, long time. What we DID see was this:

Nobody told me that anything this crazy awesome happened at International Night. If I’d known about this, I would have shown up years ago. Especially after seeing these faces react to it:

Then one of the dragons tried to eat Quinn and it was all he could talk about.

This dragon.

Unfortunately, we then ran across a woman who was using wax, fire and dye to paint eggs and then THAT was all Quinn could talk about. Also unfortunately, the woman said, “Sure you can make one, little boy, but it will take an hour and a half,” which naturally led to a lot of, “But she saaaaiiiidddd!” and “I waaaaaant to make one!” and “Can I do it at hooooooome?”

Then he made this face, which sucked.

Sam was still missing at this point, but I had a theory that he was probably in the by-now dark school courtyard, which had pretty much turned into Thunderdome with balls being hurled about and children careening everywhere.

With my finely honed herding skills, I managed to extract all three children and we wandered to the other end of the school where we finally saw Sam’s poster.

He wrote the section on the right about curry.
My favorite sentence: “Indians are thought to eat curry.”

I could tell that we were nearly at the end of our ropes at this point and knew that we would soon have to flee from the building.

But not before some spinning in the gym.
Overwhelmed much? I almost joined them.

I’m not going to say that International Night was awesome, but dammit, we survived, and I managed to leave with the same number of children that I arrived with, which I always consider to be a victory.

Stimey, 1; Forces of Entropy, 0

Autism Unexpected: Does Autism Awareness Day Matter?

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Today is world autism awareness day. Each year, when autism awareness day rolls around, I wonder why we make such a big deal about an arbitrary day in April.

Who doesn’t know about autism yet?

With 1 in 110 children affected, everyone has to know someone with autism. I am so aware, every single day, of autism. I wonder why we need to bother.

And then I remember. I remember that before I had a child with autism, that although I knew autism existed, I didn’t really know anything about it. It just seemed like this scary, terrible thing that happened to other people.

I remember seeing children and teenagers acting out in public and judging them and their parents without even thinking that there might be an underlying disability. I would see people with certain stims, repetitive and awkward movements, and feel uncomfortable, not knowing how much I should acknowledge them.

I remember that I would look at people with obvious developmental or intellectual disabilities—although I didn’t know the difference between them then—and feel nothing but sadness for them. Do they wish they could be normal?, I would wonder.

I remember that I had no idea that people with developmental and intellectual disabilities are normal, just not the same as you and me. I didn’t know that people with severe disabilities could be happy, productive, worthwhile members of society. I didn’t know that people who couldn’t talk could communicate. I didn’t know that these children and adults were deeply loved and the lights of their families’ lives.

I assumed that having a child with these disabilities would be devastating and life destroying.

This was me, five years ago.

This might be you, today.

This is why we need to work so hard to spread awareness. People who are unaware are not bad people. I wasn’t a bad person back then. I was in favor of helping people with disabilities, but I didn’t spend much time thinking about them. I just didn’t know, and I didn’t think I had a reason to learn.

My son Jack and his autism diagnosis were my impetus to learn and to be aware, but I wish I’d bothered even before then. A lot of people assume that things like autism awareness don’t affect them, but they do. Autism affects me, and it affects you.

Your child will have a classmate with autism, who will be treated well or treated badly, in part based on how you teach your child.

You will have a coworker with autism, who will be embraced for her quirks and abilities, or ostracized for being weird.

You will run into a residential home outing at the mall, and you will have the choice to walk by quickly with your head down, or give them the same attention and respect you give other shoppers, or maybe even more, knowing they won’t get it from everyone.

Your tax dollars will be spent on government early education programs and special education or it will be spent later, after the system has failed these children who might have had bright futures in a society with more forethought.

You might give birth to a child with autism. If you do, you will see the gifts that having a special needs child brings. You will understand how hard it can be. Your eyes will open to the joy that comes with it. You will know that your child with autism is just as precious as any other child and will grow up to be an adult with autism, who is no less important because of his developmental disability.

You will need the world to be aware of and accepting of your beautiful child.

This could be you in five years.

This is me, now.

This is why autism awareness day is important to me. This is why even though sometimes I get tired of talking about autism, I continue to do so. Every single person I reach is someone who might be able to make my son’s life, or the life of another person with autism, better.

I hope that my awareness and acceptance message reaches someone new today. I hope that this person will then spread that message to another and then another. I hope that this message can help.

This is my autism awareness day.

Originally published at Autism Unexpected on March 30, 2011.

They’re Cute, But They’re Teeerrrrible.

This is a post about Brussels sprouts. Yeah, now you’re glad you showed up here today.

No one in my family had ever eaten a Brussels sprout. Then this happened…

…and people started tweeting me recipes for absolutely scrumptious ways to cook Brussels sprouts and I decided that I believed these liars friends of mine and I would cook Brussels sprouts!

SPOILER ALERT: Brussels sprouts are disgusting.

Also, it’s annoying to have to capitalize the name of a vegetable every time you use it. I object!

So one day last week, I went to the grocery store and bought a little bucket of Brussels sprouts. I brought them home and showed them to Quinn, who immediately grabbed one and started eating it raw.

I know. I know. He’s a lunatic.

He actually ate the entire thing. I was all, “Hey, Quinn, you know I’m supposed to cook those right?” and he gave me this kind of guilty look like he’d done something wrong and told me that he was sorry and he didn’t know. And frankly, I don’t either. I mean, I’d never heard of anyone eating Brussels sprouts raw before, but honestly, I’d never really heard of anyone eating them before.

I mostly thought they were used to represent adorable little heads of lettuce in dioramas of gardens and as projectiles in food fights because they’re easy to throw. That’s all I’ve used them for—and I’ve never made a diorama of a garden.

Quinn said he only liked them “medium” when they were raw and that he was looking forward to trying them after I cooked them, which I eventually did, using the olive oil, salt and pepper option that so many of you suggested.

Quinn took one look at the cooked Brussels sprouts and said, “They kind of look like boogers.”

He was right.

He tried one, but he wasn’t very happy about it.

He didn’t like them.

Quinn informed me that I had ruined the Brussels sprouts by cooking them. I tasted them too, and at this point in my life, I am pretty sure that no one can ruin a Brussels sprout, because they start out horrible. Never having tasted a raw one, you might think that I am making assumptions, but I had assumed that cooked Brussels sprouts were disgusting and I was right and could have avoided the whole debacle by trusting my insticts, so instead of making that mistake again and actually tasting a raw one, I’m just going to declare that those things are gross across the board.

Obviously, I forced Alex to try one as well. Based on the expression on his face when he first saw the sprouts, I was pretty sure I should have my camera ready.

He did not disappoint.

The sprouts made my adorable husband very, very sad. The fourth photo is my favorite. (This photo montage = one more reason you’re glad you’re not married to me. That’s #836, in case you’re counting.)

Also, here is this awesome photo from a field trip we went on a long time ago when Quinn saw Brussels sprouts on their stem and was completely amazed.

*****

Want something more substantial than Brussels sprouts? Check out the what I wrote about what some members of the autism community had to say about Parents magazine’s lack of autism coverage for Autism Awareness Month.

Also, did you see my post about graphic novels for young/reluctant/autistic readers?

Autism Unexpected: Parents Magazine vs. the Autism Community?

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It all started when Jennifer Ethirveerasingam looked at her April issue of Parents magazine. Mother to a child with autism and aware that April is Autism Awareness Month, she began to page through the magazine, looking for an article—anything—about autism. Finding nothing, she told some friends, who posted on the Parents magazine Facebook page under the heading “Lack of Autism Coverage.”

“What a missed opportunity to raise awareness, provide information and to include families with autism in your parenting discussions,” wrote Beth Andersen, the first to broach the topic on the magazine’s wall.

Within hours, this slight gained traction in the online autism community, collecting dozens of comments on the Facebook posting and inspiring a string of posts around the blogosphere criticizing the magazine for neglecting a demographic that makes up a sizable chunk of the parenting population.

Alysia Butler, author of the blog Try Defying Gravity, says that a few words from Parents could make a real difference in the lives of both parents already living with children with autism and those who might need intervention in the future.

“Maybe I would have had my son diagnosed sooner had I read an article on red flags, or maybe I wouldn’t have felt so alone if I had seen a story on how families are thriving despite their child’s diagnosis,” Butler wrote in her comment on the Facebook page. “I appreciate that you have some information sprinkled throughout the year, but a special section in April would have meant so much to so many.”

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Parents’ only mention of autism in the April issue.

Parents‘ initial response on their Facebook page was to point out the sole item in the April issue mentioning autism, a paragraph about bed tents, which some parents use to keep their children from wandering at night.

Not satisfied with that response, or the information that Parents has two online-only articles in the works, comments continued to roll in. Two days into the conversation, Parents chimed in again, apologizing for making families of children with autism “feel dismissed or unappreciated.”

“We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110,” they posted. “It’s about real people and real families.” Parents followed up with a request for autism families to submit their stories for inclusion in a blog series.

Mixed reaction ensued, most notably outrage that online-only articles of print magazines are far less likely to be read than print versions of the same magazine that tend to sit in pediatrician offices for months at a time.

Ethirveerasingam, who writes a blog called The Adventures of Boy Wonder about her son with autism, says that she is disappointed in the magazine’s response. “No one will see our stories. They haven’t helped anyone who is now wondering about their child or made the 1 in 110 [subscribers] who are living with autism feel like their children matter.”

Beth Andersen, who started the “lack of autism coverage” thread, says, “Families with autism are sick and tired of being marginalized and left out of the discussions. There are enough of us out here that, when we raise our voices together, we demand to be heard.”

Calling the unceasing need for advocacy one of the hardest parts of living with autism, Andersen continues, “It is exhausting. I think so many of us are simply saying, ‘stop making it so hard for us to live like normal families and have at least some measure of peace—some downtime from the constant advocacy and educating.’”

With so many parenting topics to choose from, no magazine can cover all subjects. Does a nearly 1 percent autism rate merit special coverage of the topic? What is the responsibility of a parenting magazine to alert new parents to the red flags of developmental delays? If, as one Facebook commenter wrote, “By ignoring autism in your magazine this month, you send a message that families like ours just don’t matter,” how can such a magazine manage to include all parents? Should they try?

Parents magazine Editor-in-Chief Dana Points says that although they have covered autism in their print versions over the past year and have another story about autism in their inventory for an upcoming print issue, they were not aware how much April meant to the autism community.

“There is no other community that I can think of that has responded so forcefully,” she says. “The importance of the month of April is something that is very interesting to me. Might we do something next April? Absolutely. Will be ignore it until then? Heck, no.”

Points says that she knows Parents can’t publish on every topic she would like to, but that, she says, “is the beauty of Facebook and our online community. [Parents] have a voice, and we listen.” She does say she understands that many readers are angry at the magazine and that one of the lessons she has learned from autism parents’ reactions is that having these issues recognized in print matters.

What does the future hold for autism and Parents? Points says that they have already received 50 submissions for their blog series, which will be posted in April. She also said that they are likely to comment on the situation in their June issue, which they are currently working on. “I’ve thought over the past few days that there are things we can do in print,” Points says, “but we might not wait for next April.”

Whether autism parents will be around to read those articles remains to be seen. What is for sure is that these parents want stories about their children in the public domain.

Ethirveerasingam says that she wants people to know that as challenged as her son is, “He matters. His life has meaning and value. When our children with autism are dismissed, it breaks my heart. He has made me stretch and grow in ways I didn’t think I was capable of doing. He has made me a better person.”

Originally published at Autism Unexpected on March 21, 2011.

Nobody Understands Me/Everybody Hates Me

When I was a kid, I remember saying, “Nobody understands me.” I remember saying, “Everybody hates me.” I said it a lot. I said it so much, in fact, that for one of my birthdays, my mom got me a little plaque with a picture of a sad basset hound on it underneath the words “Nobody Understands Me.”

As a young child, I didn’t have close friends. And as an even younger child, I was the girl standing awkwardly by herself not really knowing how to not look so obviously friendless. I was the kid that the teachers would make small talk with so I wasn’t just standing by myself. When I was in elementary school, I remember my mother asking my older sister to include me at recess so I wouldn’t be all alone.

I know that there were kids I hung out with (or around) through elementary school, but I also have vivid flashes of more incidents than I care to enumerate of times where I felt painfully alone in a group of people or on a playdate.

*****

Today, Jack’s teacher emailed to tell me that Jack had been repeatedly saying “Everybody hates me.” This isn’t the first time I’ve heard that phrase come from Jack either. He’s saying it more and more often.

As he gets more interested in other kids, I think he sees more how difficult it is for him to join them. I’m not even going to go into detail about the health room pass that he brought home, on which he’d written his name and, in the blank for “complaint,” wrote, “nobody loves him. everyone hates him.”

Today I caught myself telling Sam that he should compliment Jack every once in a while to make him feel better about himself.

I’ve been Jack, but I don’t know how to make it better for him.

*****

There was a perfect storm of angst, teacher notes, piles of homework and sibling drama this afternoon that pretty effectively destroyed the entire family’s day within a half hour of everyone arriving home.

The only awesome thing was that juuuust when I was about to snap, the phone rang, and because some things in the world are still good, the person on the other end of the line was some sort of political telemarketer who wanted to tell me about the governor of Wisconsin and how the unions and the teachers were keeping schools closed.

It was sort of awesome to be presented with such a great target at which to vent my anger. I started with, “No, no, no, no, no! You don’t call my house and start bashing teachers,” followed by a few other things, and then I ended, somewhat inexplicably, with, “So, why don’t you call back some other time and talk to someone who agrees with you!”

Later, much later, when Alex and I were able to laugh again, I asked him, “Did I really tell that guy to call back?” Don’t worry though, I don’t think he will.

*****

Laugh or cry, people. Laugh or fucking cry.

For the Love of All That is Good in the World, Let There Be Spring

Every single year I get really excited in March and write some sort of post about spring arriving. Most years I probably use one of the following words in the post title: spring, fling, sprung, sprang, SPROING!

These tend to be followed by April entries that use the following words: fuck, you, snow.

Okay, that thing about March and spring words turns out not to be true. I just searched through all of my March entries and it turns out that I only did this in 2007 and last year. It is, however, EXCEPTIONALLY easy to find entries where I make things up.

One of my favorite spring posts of all time is one about Jack and Quinn becoming friends. I wrote it less than a month after I started blogging and it remains one of my favorites. They were/are so cute.

The point of all this is that the past three days have been remarkably spring-like and wonderful and although Alex and I have been huddled up and destroyed by clouds of sickness for the last several days, we both presume that the children have been out and about enjoying themselves in the spring weather.

Well, really what they’ve been doing is play video games as Alex and I fight over whose turn it is to nap. Today I told them that if they wanted to play Super Smash Bros. Brawl that they had to go outside first and play Super Stimey Bros. Brawl. Which they did.

See Quinn. See Quinn punch Sam.
See Sam. See Sam retaliate with a stick club.

Speaking of sticks, thank goodness for all the snow, wind and rain that knocked all of the branches off of our trees this winter because now my kids have plenty of ammunition with which to bash each other. Next Christmas I’m going to give them bundles of sticks, because that’s all they want to play with anyway.

Also, can anyone tell me how all the giant branches fall out of the trees but I can still see bird nests, evidently attached with epoxy, up in the still-attached limbs?

Being Stimeys, we naturally plan to pick up those fallen tree limbs sometime in 2013. By that time we’ll have enough to make it worth our while.

Plus, if we move them, what will the munchkins climb on and stab with?

They had the world’s shortest picnic too, at which they consumed goldfish crackers, pretzels and Calvin & Hobbes. (By “consume,” I mean “read.” I don’t want anyone to get the wrong idea here.)

Note the scavenger dog acting all cool as she lays in wait.

If it snows again, I don’t know what I’m going to do, but I imagine it will involve loud sobbing. I am SO ready for spring and summer. I have plans to shove my kids outdoors for the first hour after they get off their bus from now until the end of school, so I will not tolerate rain nor sleet nor snow NOR dark of night.

Huh. Look at that. Jack is outside on the slide playing with a plastic hammer that a baby left here last summer and an empty can of pineapple chunks. That’s weird. Also? Why do I buy toys?