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.

Wednesday, July 6, 2011

Lost Wanderer

Today I had one of the experiences every parent dreads--a lost child. I am beyond grateful that we found him safe and sound in less than 30 minutes.

H. is a wanderer. He would gladly roam on his own with no strings, minders, leashes, fences, or other restrictions, but because he lacks danger sense and doesn't have the verbal ability to say where he is going and when he will return, we can never give him that kind of freedom. Until he develops those essential skills, we keep his movements under constant limitation.

This morning we we waking up from a restless night spent at the MGM Grand in Las Vegas, Nevada. Each child had awakened at some point during the night, but we had managed to get each back to sleep. We had discovered that we needed to keep the deadbolt locked in the room because H. could slip out the door if it wasn't locked. So when I went out to get coffee, Red Bull, and milk, Mike locked the door behind me.

When I got back, I knocked at the door and Mike let me in. I passed Mike the Red Bull, poured milk for the kids, and sat down, waiting for my coffee to cool. I noticed that H. finished his milk; I noticed the E. was still working on hers. Neither of us noticed that we hadn't locked the door behind me.

I let my attention drift to the cartoon on the TV. I did not hear H. open the door and I did not hear the door close. I think three minutes passed before I noticed that I hadn't seen H. bouncing through the room. "Where's H.?" I said to Mike. After the ten seconds it took us to determine that the door wasn't locked and he wasn't in the bathroom or closet, Mike said, "He's out." We got our keys, leaving E. watching cartoons, and split up to search our hall.

The panic didn't hit me until I had searched down the hall as far as the vending machine. Past experience with hotels and motels had told me H. was attracted to vending and ice machines, and I thought he would head there. When I saw that the hall was empty, and I couldn't see him down the other hallways that led off the central hub, I realized that my son was out of my sight, and I had no idea which way he had gone.

I started hyperventalating as I approached our room. "I can't find him," I gasped to Mike. "You go call security," he said, still calm. "I'll keep looking." I called the security desk and explained the situation. I went to the door, propped it open with a chair, and sat down.

Within about two minutes two security personnel were at the door to talk to me. One of them left to check the stairwell.

About two minutes later, Mike came back. We explained that H. would not answer to his name, and the security officer who was still at our door relayed that information to the rest of her team.

About three minutes after that, she got a message, which she relayed to us: "We've got him. On camera, heading to the central core [the middle of the floor where the hallways meet and the elevators are located]." The security team was still searching, but they had made visual contact.

Two more minutes went by, and then the security officer got another message. She didn't stay to explain it to us, she just left.

To get my mind off what was going on, Mike told me to get E. and myself ready, so I started on that task. While E. and I were in the bathroom, the security officer came back and spoke to Mike, then they both left.

I think five more minutes passed. I'm not sure. Then I heard Mike's voice and H.'s voice in the hallway, and I ran out to check. They were both coming up the hall. I had managed to not cry until that point, but as I ran the thirty feet to Henry I started to sob. I hugged him, and when I pulled back to look at him, he gave me a goofy, befuddled grin, puzzled about why I was so upset.

Mike explained that the security officer had taken him up to the fifth floor, where the security team had caught up to H. There was a team of five officers around him, one of them holding his hand, but he was totally unfazed. Apparently he had explored floors 10, 4, and 5, in that order, by calling the elevator and pressing the buttons for the floors he wanted to visit.

I have no thoughtful analysis to offer for this incident. All I can offer is a heartfelt thank you to the security staff at the MGM Grand.

Thursday, April 28, 2011

The ones who can't tell

[Spoiler alert]
I just finished reading The Girl with the Dragon Tattoo by Stieg Larsson. I won't go into detail; the spoiler I'm going to share is that the protagonist, a middle-aged male writer, makes the mental observation about the title character, "Asperger's syndrome...or something like that. A talent for seeing patterns and understanding abstract reasoning where other people perceive only white noise." He reaches this conclusion after discovering that the girl, Lisbeth, has an eidetic memory and can almost immediately figure out any mechanical or technical system. A person with a lot of knowledge about ASDs can see a lot of typically ASD characteristics in Lisbeth's character, although she has other characteristics that contradict ASD symptoms. But since she's a fictional character, it's not really worth splitting hairs.

The thing on my mind this morning is another defining element of Lisbeth's character: she is the victim of horrific sexual abuse propogated by men in positions of direct legal power over her. And she does not report the crimes these men commit. Any humane reader will be disturbed by the situations, and the scenes in the book are brutal.

But I am additionally disturbed by the novel because I worry about my children, who cannot speak for themselves, falling prey to people like that, and the older they get, the more I worry. Even though I have total confidence in the people caring for them now, I won't always be able to control things. This local story, which was uncovered recently, really got under my skin, and I've been worrying more ever since I read it.

I wish I had an upbeat note with which to end this post, but I don't.

Friday, April 22, 2011

Life is funny

A few hours ago I had one of the worst experiences of my life, hands down. It's a nice day out today, so the kids were playing outside, and H. was taking his pull-up off as often as he could. Having gone through this before, I knew that eventually I would come outside to find him without pants and with feces all over his butt because he had defecated in his pull-up and then taken it off. And soon enough that's exactly what happened.

Usually, after I find the poop-filled discarded diaper, I lay H. down and clean off his butt with wipes, or attempt to clean him off while he is standing. And even when he's feeling silly and giggly, he allows me to clean him up.

Not today.

Today we had a knock-down drag-out wrestling match to get him to lay down in the grass so that I could clean his butt. I tried to sit on his torso to keep him still, a tactic I have used before, but today he wrenched himself loose several times. Eventually--and I don't know how else to put it--I had to attack him, throw him to the ground, and straddle him so that I could do something I do every day. Wipe shit off his ass.

Of course, he was terrified and screaming by the time we were finished. I told him, "I'm sorry that I scared you. And I'm sorry that I pushed you down and sat on you." After a pause, I said. "But I'm not sorry that I cleaned your bottom." He was OK after a few minutes and let me help him into a clean pull-up.

I went inside and changed my pants, because I was pretty sure I had gotten crap on them. I washed up, took some deep breaths, and decided we would run some errands that involved a lot of driving and not a lot of getting in and out of the car.

Once we got home, all of us were feeling a lot more calm. As I sat on the deck watching the kids, I thought to myself, "I would say I feel exhausted, but I feel like I have exhausted exhausted." Then I remembered the conversation Mike and I had last night after another insane dinner. "We handle this incredibly well," he said, and I agreed.

Just then I looked down at my foot, and I noticed this:
Yes, that's a big smear of shit on my ankle. I'd been walking around with it for hours. And that proves my point. It's also proves that life is funny.

Tuesday, March 29, 2011

First comes social, then comes language

If you haven't already watched this adorable video of two twin boys, go watch it now.

Now, if you thought, "Aww, that is so cute!" you would be absolutely justified. But this video offers some great insights into the social foundation upon which children build their language skills.

Words here? Just the syllable "da." Everything else, though, demonstrates the complex language skills these young boys have already acquired. It illustrates the point a speech pathologist once made during a seminar I attended--language is like a layer cake, and the foundations of those layers are social interactions.

The most basic layer is shared attention. You can see that the boys make eye contact with one another. Then there is social referencing. When one boy looks at the freezer, the other one follows his gaze to at the freezer too. They are conscious that the focus of the other's attention is significant, and so they turn their attention to that significant object. In addition, at about 1:30 one of the two boys turns to look at the person holding the camera, a sign that he wants to know whether that person's attention is on him and his brother.

They also react to one another's facial expressions. Although we can't see the facial expression of the boy whose back is to the camera, his brother laughs when he pauses, and smiles before returning the verbal exchange. They also use gestures, imitating one another.

Another thing to notice is the fundamental verbal communication skills they employ. Even though they only say "da," they do so with inflection. The boy whose back is to the camera raises the pitch of his last "da," suggesting an inquiry or at least an invitation to respond. In response, the other boy often shakes his head and waves his arm as if giving a negative to a question. Their turn-taking is also notable. Each one lets the other finish, which is why we can think of it as a "conversation," as the video title designates it.

If my analysis seems labored, forgive me. I go into all these details because I have never watched my children do this. These two baby boys are demonstrating sophisticated verbal skills that are commonplace among typical children, but not among developmentally delayed children. This beautiful interaction is more than cute--it is a marvelous gift.

(Thanks to Lynn Kilpatrick for sharing this link.)

Wednesday, March 16, 2011

Spa Day

When you can swing a spa day, there is no downside. Well, that's not entirely true--it costs time. Time to do nothing. And there's money, if you're going to a spa. Lots of money, depending on what you do.

But today, I needed a spa day, because yesterday I spent three hours at the hospital with my daughter while she was having dental work done. (She's just fine, by the way. She now has a silver crown on one of her baby teeth and looks quite piratical if you look at her back teeth.) So I made it happen.

Since I can make time more easily than money, I did a home spa day. And since we now have a working jetted tub, a home spa day can be pretty nice. However, my home did not start out very spa-like today, so the first order of business was cleaning everything up, buying groceries (cucumbers, yogurt, salad, etc.), and setting up the "spa." The good thing is that spas always have lots of rooms with closed doors, so I could just close all the rooms that I didn't need to access.

I ended up spending about the same amount of time preparing the spa as I did enjoying it. "Mrs. Weber's Spa" only has one attendant, after all. DIY pedicures are never as good as professional ones (if only because of the positions you have to get in to reach your toes). On the plus side, I could wander around in booties, gloves, and towel (or less) without feeling at all awkward.

The moral of the story, I think, is that I needed to be my own attendant today. And as much as I enjoy being waited on by other people, waiting on myself is its own reward.

Well, spa day is over, and my house is a madhouse (albeit a cleaner madhouse) again.