Inside the Beehive

How dare they?

2011-07-21T21:03:00.000-07:00

This article, Dressing down for GQ - BostonHerald.com, contains the details about a highly offensive language in a web article posted at GQ.com. 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.

Lost Wanderer

2011-07-06T21:15:00.000-07:00

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.

The ones who can't tell

2011-04-28T10:23:00.000-07:00

[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.

Life is funny

2011-04-22T15:06:00.000-07:00

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.

First comes social, then comes language

2011-03-29T13:40:00.000-07:00

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.)

Spa Day

2011-03-16T16:29:00.000-07:00

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.

Spread the word to end the r-word

2010-03-03T14:58:00.000-08:00

Today is an event to raise awareness of the r-word--retard--that people tend to use callously and unconsciously. I wince every time I hear someone say it, especially when kids say it. There are better words to use, words that don't hurt people with cognitive impairments and differences.
This website can tell you more.

New year, new look

2010-01-03T20:27:00.000-08:00

Decided to apply a new template for the blog. Maybe this will make me more inclined to post, the way that buying new workout clothes is supposed to make one more inclined to exercise. We shall see.

A post, a post!

2010-01-03T20:04:00.000-08:00

January 2010--hard to believe we're already here. Once again, it has been six months since my last post, so the guilt finally caught up with me. I will post a highlights of 2009 letter within the week. For tonight, let me just say that I am very happy that today was the last day of Christmas break, and big H goes back to school tomorrow. Taking care of my two kids makes paid work look like a walk in the park. Which is one of the big reasons I still work, albeit only about 10 hours each week.

Everybody have a great week. More soon.

Mozart and the Whale

2009-06-17T20:17:00.000-07:00

One of the things I'm going to do to generate book content is write up some reviews of books I've read recently on autism and related topics. Here's my first.

Mozart and the Whale: An Asperger's Love Story
By Jerry Newport, Mary Newport, Johnny Dodd
Simon & Schuster, 2007

This autobiography is written from the separate perspectives of Jerry and Mary Newport, two individuals with Asperger's Syndrome, who met in their middle years, fell in love, separated, and reunited. The book goes much farther back in both their lives, though, giving readers a glimpse into the lives that shaped these two people.

This book is valuable reading for parents of children with autism for at least one reason: your children will not always be children. They will grow up into adults, and as such they will be dealing with the desires and demands of the adult world. The Newports, especially Jerry, are unflinchingly honest about their romantic and sexual experiences. It's a valuable examination of the subject of sexuality and disability. It's an understatement to say that this subject is underexamined; most of the time it is ignored completely.

For anyone else, this book is just good reading. The stories Jerry and Mary share range from funny to uplifting to tragic to downright terrifying. Jerry's stories resonate with me because I know that my son will face many of the same kinds of frustrations and anxieties that Jerry experienced. Mary's stories simply amaze me. This woman ran away to Haight-Ashbury at the age of 15. Her parents placed her in the custody of a religious cult that eventually abandoned her and her newborn baby in Europe. And that's really just the beginning of her stories. It's amazing that she lived through it, and her unique perspectives are equally amazing--sometimes shocking.

Their story was made into a movie in 2005--I'm going to have to add that to my Netflix.

Update on, well, everything

2009-06-17T19:57:00.000-07:00

I thought for sure I hadn't posted anything in almost a year--turns out it has only been six months! Yay for me.

I figured I should provide a little update on what's going on in our lives, autism-wise and otherwise, so here's a short summary.

We're all healthy, no more or less wealthy, and surprisingly wise.
Evie has recently been assessed as having "mild autistic symptoms." That's nothing to be alarmed about--basically, she has a speech delay and she gets really focused on what she's doing (and really irritated when she has to stop). She has already been receiving some services, and she's on the waiting list for a couple of preschool programs.
Henry is wrapping up the year at Carmen B. Pingree preschool. He has completed the Level 1 attending program and--cross your fingers--appears to be getting the idea of toilet training! He will start preschool at Carmen B. Pingree this fall.
I am trying to figure out what I am going to do with Henry for the next 8 weeks until kindergarten starts.
I am also working on a book for parents of children with developmental disorders. It's a survival guide to caring for yourself, your family, and your child. The outline in flux, but I am working on producing content and I'll fix up the shape later.

That's the short version. As part of my book effort, I'm going to try to write blog posts more often to help me generate content.

The last word on vaccines ... for a while

2009-01-04T22:49:00.000-08:00

OK, I'm running the risk of beating a dead horse here, but I just stumbled across the best summary I've seen on why the vaccine debate is a non-debate. I don't know a lot about the writer of A Free Man blog, but the post is extensively hyperlinked to original news stories. The piece he found showing that Dr. Anderw Wakefield, the scientist who first touched off this powderkeg, received payment from a law firm who represented the subjects of his study, is news to me, and shakes the already-wobbly foundations of the vaccines-cause-autism argument.

Folks, this mistaken belief is leading to a public health crisis. But it appears that American children and adults will have to start dying from measles before opinions on this topic change. And for that reason, I'm not ashamed to beat this dead horse.

I couldn't say it better myself

2008-12-26T09:20:00.000-08:00

Another post from Autism Vox, this one on the vaccine controversy that is, as she says, "a false controversy":

2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.

I know there are folks who read my blog that are in the anti-vaccine camp, so it must be frustrating to always see me take up the other side. I feel obliged to continue, though, because science has a hard time arguing against emotion, and it seems like the argument for a vaccine-autism link is based on emotions. More from Kristina Chew:

Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing ... is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.

The autism diagnosis is so devastating that parents are always going to look for something to blame. Vaccines have become an easy target. The same thing happens with other diseases that have often-mysterious causes: cancer, SIDS, Alzheimer's disease.

One place where I will disagree with Dr. Chew is in the area of good parenting. Parents with disabled kids are, for the most part, awesome parents. They don't have a choice. I have more patience with my children than I ever believed I could possibly have. The nature of raising a child with a disability made me go back to my reservoir of patience, dig it out and expand it, and let it fill up even more. There are people who can't handle it--the stories of abuse and murder of autistic children prove it--but those of us who get up every morning (and in the middle of the night) and keep providing love and care for children with very challenging demands are great parents. We need to give ourselves that affirmation every day.

Tragic story

2008-12-09T21:34:00.000-08:00

I have AutismVox, an excellent blog on autism, on my feeds; unlike my blog, it is frequently updated. I just saw this tragic story about a 5-year-old boy (the same age as Henry) who was duct-taped by his father because he hit other children at day care.

I can't add anything to the description in the story. It's so sad. I've cried before when I had to lock Henry in his room as a punishment or to force him to calm down. I can't imagine doing what this man did to his own little boy.

Texting--no, it's not teen autism!

2008-10-26T18:25:00.000-07:00

This post from the Language Log about "Bad Language" doesn't have direct bearing on autism or even language processing, but it is an intereting little discussion of "sky-is-falling" fears about whether text messaging is limiting the abilities of kids to engage in meaningful face-to-face interactions. It's also a defense of the attitude of linguists that change in language is a normal and (for the most part) healthy development.

From my personal experience, yes, social and language skills can be taught to people who have impairments in social interaction and language (i.e., people with autism), but they aren't skills that unimpaired young people will lose because they like to spend a lot of time texting.

Mimicry and facial expression

2008-10-23T12:04:00.000-07:00

I just read this interesting article on facial expressions from Discover magazine. I thought the information about mimicry and emotional expression was especially interesting in the context of autism (although the article does not discuss autism). People with autism have difficulty with mimicry and also have difficulty with expressing and interpreting emotion (this is probably why people with autism often avoid eye contact).

According to this article, mimicry and facial expressions have a hard-wired brain connection--if you look at someone who is grinning, your brain will tell you to grin too. Even if you're trying to identify a grin, your brain will tell you to start grinning. So if a person with autism has a problem with the mimicry function in his brain, then attempting to interpret facial expressions would be not only difficult but potentially uncomfortable as his brain tries to route messages through a part of the brain that doesn't do exactly what it's supposed to do. Instead, he may avoid the issue by not looking at people's faces.

I suspect people with autism accommodate for the challenge of interpreting expression by learning what expressions mean much the same way they learn to read--a smile is a sign for happy, a frown is a sign for unhappy, furrowed brows and tight lips are angry, etc. But the fact that even adults with autism often avoid eye contact suggests that the challenge of the hard-wired system remains.

No, don't, can't

2008-10-08T22:45:00.000-07:00

I attended the second session of the series on behavioral interventions for caregivers of people with developmental disabilities on Tuesday, where Marion Hunt gave an excellent presentation. She had a lot of great suggestions, but one of the things that stood out was the idea that in normal parenting/social practices, we reward problem behavior and punish appropriate behavior. Specifically, we give attention to problem behavior, and attention, positive or negative, is a reward for many developmentally or cognitively impared people. At the same time, we ignore appropriate behavior.

I'll tell you, until you try to not acknowledge a problem behavior and only praise appropriate behavior you have no idea how counterintuitive this process is. As a parent, it is so hard to not run around saying "No, no, no!" But, if we want to succeed in modifying problem behavior, that's the shift we have to make.

Ms. Hunt also said that caregivers who work with developmentally delayed people should banish the words "no," "don't," and "can't" from their vocabularies when talking with their people. Again, totally counterintuitive, but much more effective.

Mike and I tried this technique this past weekend at my mother's house, where Henry was tapping his hand forcefully against the lampshades of every lamp he could reach (which was at least six). Instead of saying "No Henry" every time, we started saying "soft touch" and placing his fingers gently against the shade. By the time the evening was over, he was gently touching the lampshades instead of pounding on them, so the negative event we wanted to avoid--a broken lamp--was much less of a threat.

It's very hard to remember just how differently a person with autism perceives the social world, and as parents we have to keep reminding ourselves over and over. As Ms. Hunt said, you cannot expect that your people will know the appropriate behavior in any situation. They don't watch and imitate the way most children do. You have to teach and reinforce the appropriate behavior for every situation and give your child a chance to succeed.

Happy Birthday, Henry!

2008-10-01T13:32:00.000-07:00

Today is Henry's fifth birthday -- yay!

I'm very happy he's part of our lives. He is a wonderful, loving, special person who happens to have autism.

I attended a seminar yesterday that was teaching approaches to manage problem behavior for people with developmental disabilities. Even though Henry has pretty poor manners (he doesn't know or follow most social rules) for the most part he is well behaved (he doesn't hurt others or throw things). But when he does get upset, it can get pretty intense, so we want to have some tools available.

I arrived late, and just after I sat down another woman arrived and sat next to me. Within moments, she was starting to whisper to me about her own troubles with her child. Now, to me, that's just rude, but she didn't seem to think it was inappropriate. She also made quite a few observations aloud in response to invitations from the presenter, which was fine.

I bring this up because I was struck by the attitude she seemed to have toward her child -- that he was such a problem, and that she was suffering because of his behavior. Also, this is not the first time I've observed this attitude in another parent of a child with autism.

Don't get me wrong--we all need to vent, and our kids do drive us crazy. It is hard, hard, hard. But I find it alien when I hear a parent who seems to regard herself as the victim in the situation. I mean, the kid is the one who has to struggle the most.

I do feel sorry for myself, but the thing that makes me grieve is knowing how unfair this struggle is to Henry. I hate to see him suffer -- he's a good, loving person who tries his best, and he doesn't deserve to have such a hard path. But then I tell myself the same thing, the quote from The Unforgiven, "It's not a question of deserve." This is just the way it is.

I recently rediscovered a copy of a poem by Langston Hughes called "Mother to Son." It's short, so I'll reproduce it here. (Note: Unlike the mother in the poem I've had a pretty good staircase.)

Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor -
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So, boy, don't you turn back,
Don't you set down on the steps
'Cause you find it's kinder hard,
Don't you fall now -
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.

So Henry, happy fifth birthday, and know that I am not going to give up on you. I know you can keep on climbing.

Eureka!

2008-09-10T22:11:00.000-07:00

I've been discovered! I just found the first comment on my blog by someone I don't already know! So thank you, gentle readers, for taking the time. I hope I can give you something back.

Speaking of Eureka, one of our favorite TV shows is the SciFi channel series Eureka, about "America's Smartest Little Town." I love it for many reasons, but one reason is because one of the main characters, Allison Blake, has a son with autism. The scenes with Kevin (her son) in the first season really resonated with me. The second season involved Kevin in a rather bizarre storyline about ultimate knowledge, but it wrapped up with him returning to his previous state of mind. However, we're now half-a-dozen episodes into the third season and they haven't even mentioned Kevin's name, so I'm getting somewhat impatient. Come on, SciFi!

Hooray for Pingree!

2008-09-10T21:55:00.000-07:00

Didn't I promise that this post would be more upbeat than the last one? Well, there's no getting around it because Henry's doing really well so far at the Carmen Pingree school. He's excited to get on the bus in the morning, he seems happy even though he has to do more work than before, and he's making great progress. Every day the school sends home a detailed record of how much he's progressing in each step of the program--it's really wonderful to get such an intimate view of what they're working on.

On another topic, my friend Jeff inspired me to look for information about research on the causes of autism because he said he hadn't been able to find a lot of articles in the medical literature. He wondered why the studies hadn't been done. I knew they had been done because I've read references to them.

I'm still looking for some details, but in the meantime, this article that discusses a whole bunch of new studies about the sources of autism that are in progress. Many of you may find this quote from the article interesting: "The study has already provided some intriguing leads. 'We’re finding that the immune system seems to function at a lower level in autism,' says [Irva] Hertz-Picciotto. 'That’s an important clue. It could mean that whatever causes autism also disrupts the immune system, or it could be that the immune system disrupts neural development so that something goes awry in laying down brain circuitry prenatally or in the early postnatal period.'"

Riddle me that, Batman!

A good life

2008-08-18T21:37:00.000-07:00

I just got finished watching Apocalypto (ugh!) and I need to write about something else to try to erase it from my brain. So hey! A blog post for the first time in two and a half months.

Henry will start the Pingree School on September 2, and his classroom open house is this Thursday. We're really excited, even though we know the initial transition is going to be tough on Henry. He'll be in a classroom for a much longer time than he's been used to. But he'll also have a much better opportunity to learn.

The title of this post was suggested by a conversation I had with my sister-in-law's ex-husband yesterday at a send-off party for my niece. He said, with very positive intention, that with the services available, he believed that Henry would have a good life. Most days, I think I would have agreed with him, if not because I believed it then because it's the polite thing to do. But yesterday I was really down, so I agreed that he'd probably have a reasonably healthy, safe, and comfortable life, but I also said, "That really begs the question, 'What is a good life?'"

I don't have the answer to that question. What makes a life a good life? Is a pleasant life a good life? Is a life rich in experience a good life? What about friends, relationships, and traveling? Will those experiences be possible for my son? If so, to what degree?

By a scheduling fluke, I ended up having an hour-long therapy session with a counselor at the Neurobehavioral Autism HOME clinic last week. We talked about a lot of things (well, she let me talk about them), including my feelings about Henry's future. As I told her, most parents, at some point in their lives, have to accept that their wishes for their children's marriages, educations, and careers won't be fulfilled in the way they might have hoped. Parents of children with disabilities often have to accept that a lot earlier in their children's lives.

I don't mean that I don't have faith in Henry and his possibilities. I don't assume that his life path will follow the least optimistic road. He may go to college, he may have good friends, he may have meaningful romantic relationships, he may have children, and he may have a rewarding, interesting career. But I don't assume that any of those things will happen without a lot of hard work and good luck. I think most parents have the luxury of waiting until their children are in their teens to start doubting the rosy futures they have imagined for their kids.

Hmm. Upon review, I realize this post is rather depressing (and I can't blame that entirely on Apocalypto). I'm going to post it anyway, because it is true, but I promise to make my next post more upbeat (and I won't wait two and a half months to post it).

Fuel on the fire of the vaccine debate

2008-05-28T23:13:00.000-07:00

Time magazine's cover story, How Safe Are Vaccines?, offers a well-researched counterpoint to the argument that vaccines cause autism. To date, no reliable scientific studies have shown a causal link between vaccines and autism, but that doesn't stop people from believing that the link exists, and more and more parents are opting out of vaccines. After reading the Time article, I'm more nervous about the diseases that vaccines prevent than about autism--though I'm biased, since Henry can't become more autistic and Evie seems to be autism-free. But still, autism vs. polio? I'm pretty sure polio is worse. (Thanks to my brother John for the tip on this article--see his blog here!)

In the meantime, articles like this one about autism-like symptoms in apes will be fueling the anti-vaccine fears, Time magazine notwithstanding.

A good boy who's good at a lot of things

2008-05-28T12:23:00.000-07:00

Last week Henry, Evie, and I were outside playing. I was swinging Evie while Henry walked around the garden, and I sang Henry the little song I made up for him (to the tune of "Twinkle, Twinkle, Little Star"):

Henry, Henry, my sweet boy,
Busier than a spinning toy.
Doesn't have a lot to say,
Still he brightens every day.
Henry, Henry, my sweet boy,
Henry is my pride and joy.

He kept walking for a minute, then he flopped into the swing next to Evie, making a sad little sound. Half a minute went by, and then he said, "Not good at."

Once I figured out what he meant, I said, "Oh, Henry, you're good at a lot of things! You're a really good explorer, and you're getting really good at talking!" After that he smiled and seemed to feel a lot better.

Mike and I have noticed lately that Henry's interests and anxieties are becoming more mature, the same kinds of things that any four-and-a-half-year-old would worry about. He's probably been feeling these things for a while, but he hasn't had the ability to express them, and because he still engages in self-stimming behaviors like chewing things and pacing, those behaviors mask the progress he's making.

As I've said to Mike, I think Henry is on the cusp of really making breakthroughs in his language skills, and socially he seems to be getting more sophisticated. It's impossible to know, though, and we don't want to raise our expectations too soon. But moments like this one from last week give us good reasons to hope.

A spring thought

2008-04-22T13:48:00.000-07:00

We've had a beautiful day today in Salt Lake City, and I spent an hour of it in my front yard trimming away old growth to make way for new leaves, raking up leaves and deadfall to reveal the sprouting plants, and pulling out the unwelcome interlopers that are taking root. As I clipped and pulled, I thought about the word "renewal" and the idea of things becoming new again.

When it comes to spring, for me, renewal is a bit of a misnomer, because it's more like getting back in touch with something that I've long treasured but I've forgotten, neglected, or taken for granted. It's auld lang syne rather than making new. I don't think it's a coincidence that in the past few months, I've put aside my "oh, I'm too busy" excuse and actually called and emailed neglected friends. This blog is no exception--instead of thinking, "Oh, I've got to come up with something to post," I'm now thinking, "Oh, I've got to write a post about that!"

So here's to spring, renewal, and rediscovery.

"There's a special place in heaven for mothers of children with autism."

2008-04-03T08:01:00.001-07:00

Ok, last night I read Jenny McCarthy's book, Louder than Words, in one sitting. And despite my misgivings about McCarthy's public statements, I recommend this book with enthusiasm. (The title of this post is a quote from the book.) Lots of books about autism tell the stories of how parents learned about their children's autism, but few writers bring the experience to life the way McCarthy does. It's often painful to read, but I can identify with lots of these experiences. If you want to know what it's like to have a little child with autism, read this book. I still differ with McCarthy on a few things, but I really appreciate what she's written.

The biggest difference between my experience and McCarthy's is not that she's a celebrity and I'm not, but that her marriage fell apart during this experience, and mine, I am glad to say, became stronger. I cannot express my gratitude at having a partner as loving, committed, and involved as Mike, and I know how lucky we are to have each other in this journey.

Good news!

2008-01-22T11:54:00.000-08:00

It looks like Henry will be able to attend the Carmen B. Pingree School for Children with Autism this fall. He has been on a waiting list for the free pre-school program for more than a year now, but this fall a spot is available for him. It's the last year he is eligible for the preschool program, so this is a great opportunity.

The Pingree School's program is very similar to the therapeutic preschool program Henry is in right now through the school district, but instead of getting two hours of therapy four days a week, he'll get six hours of therapy four days a week. All the research on autism intervention indicates that early and intensive intervention is the best, so the longer day has the potential to help Henry really boost his development.

What is it like to be autistic?

2008-01-22T11:27:00.000-08:00

Several weeks ago my friend Hope and I were talking about Henry, and she asked me if Henry was able to make any friends at school. I told her that Henry didn't have quite that level of emotional sophistication yet--he's still in a state where he's learning to enjoy the company of other people.

I was reminded of this conversation by something Henry's psychiatrist mentioned recently--that people with autism view the world in a vastly different way from neurotypical people. If you are interested in getting a better idea of how autistic people experience the world, there are at least two really good books out there that open a window into that experience. One is Temple Grandin's Thinking in Pictures: My Life With Autism, a memoir of sorts written by a woman with autism. The other is The Curious Incident of the Dog in the Nighttime by Mark Haddon. It's a novel for young adults told from the perspective of a 15-year-old boy with autism. The author is not autistic, but he worked with autistic youths for many years and created his main character from his experiences. I found this book especially helpful in trying to understand Henry, even though he's much younger than the main character.

For a much lighter (and probably less accurate) portrayal of a character with an autism spectrum disorder (ASD), watch an episode of The Big Bang Theory on NBC, Mondays at 7:30 PM MST. The character of Sheldon displays a lot of typical ASD signs: difficulty interpreting figurative language, an obsessive desire for routine and order, and difficulty relating to people and understanding subtle social cues. Sheldon's peculiarities make him the butt of a lot of jokes, but overall he's portrayed in a genuine, humane, and likeable way. Mike and I always enjoy this show because we see elements of our many "geeky" friends (and our geeky selves) in the characters and the situations the show portrays.

Thimerisol or not, autism happens

2008-01-14T20:09:00.000-08:00

A CNN report from last week highlights a new study that shows a consistent rise in autism rates in California even after thimerisol (a mercury derivitive used as a preservative in vaccines) was removed from vaccines in 2001. Rates of autism in children born after 2003 continued to rise despite the fact that these children were never injected with thimerisol.

I've had family members express concerns about thimerisol to me, so it's worth saying that Henry, born in 2003, has never been exposed to thimerisol. The jury is still out over whether some kind of environmental factor has influenced the rise in autism diagnoses, but thimerisol is looking less and less like a culprit.

The rise in autism diagnoses is almost certainly due in part to better awareness of the disorder among physicians and broader definitions of autism. For an excellent discussion of the changing definitions of autism since the disorder was initially identified by Leo Kanner and Hans Asperger, see Unstrange Minds: Remapping the World of Autism by Roy Grinker, Jr. It's a fascinating examination of the cultural history of autism by an anthropologist.

One in a Million--or more

2008-01-12T11:43:00.000-08:00

Every day 175,000 new blogs are created, according to this book review from Reason Online. The author, David Harsanyi, is reviewing The Cult of the Amateur: How Today’s Internet Is Killing Our Culture, by Andrew Keen. Keen thinks that all us bloggers out here are burying any good content on the Internet with drivel. Harsanyi conceded one point: "He’s right that the Internet is littered with inane, vulgar, dimwitted, unedited, and unreadable content, much of it fueling outrageous conspiracy theories, odious partisan debates, mindless celebrity worship, and worse. And then there’s the stuff that’s not even entertaining."

Harsanyi goes on to argue the benefits of bloggers in the new media, blaming the decline in traditional media, like newspapers, on the papers' business practices, not on amateur bloggers, as Keen does.

One area the article doesn't discuss (and doesn't need to) is whether many bloggers are targeting a small audience, as I am trying to do with this blog. I have to think that few people who start blogs believe that strangers the world over have a burning--or even passing--desire to read what they say. That's part of the benefit of "Web 2.0"--that it meets the needs of small groups of people and it can be customized by those people.

But you can find yet another viewpoint on this question here.

One Thumb Down, One Thumb Up for Jenny McCarthy

2007-12-30T11:01:00.000-08:00

A couple of months ago I took Evie in for her one-year check-up, and, after her exam, her pediatrician asked me how I felt about giving Evie the MMR vaccine. I hadn't brought it up, but our doctor is aware of Henry's autism. I told him that I hadn't seen any persuasive evidence that the vaccine would harm Evie or make her autistic, and that I thought it would be better to protect her against diseases I know could harm her. He was relieved and agreed with me. I asked him if parents of children who aren't autistic were asking about the vaccine. He said, "Every day."

This incident occurred in the immediate wake of Jenny McCarthy's appearance on Oprah, during which she argued her belief that vaccines had caused, or at least triggered, her son's autism. She's not alone--thousands of parents of autistic kids blame vaccines for the disorder, and some of those parents are very high-profile. McCarthy's profile happens to be very high right now.

The vaccine debate is one of the hottest and bitterest disputes in the autism community, with the medical establishment pointing to studies that disprove any link versus parents and a few doctors pointing to the higher incidence of immunilogical disorders in kids with autism. I don't claim to have a right answer, but from what I've read, if a child is not genetically predisposed to have autism, vaccines will NOT give that child autism. Admittedly, there's a lot we don't know about the genetics of autism, but parents should, in general, feel comfortable with vaccinating their children. I am.

On the other hand, I just looked at the website for teach2talk, the organization that McCarthy co-founded. The materials they have developed to help increase verbal and play skills for kids with developmental disorders look excellent. I'm especially interested in the play videos, as play remains a challenge area for Henry. So I give McCarthy a big thumbs up for helping develop parent-friendly materials to help our kids.

Autism is Bad for Cell Phones

2007-12-27T14:08:00.000-08:00

Let me be more specific--autistic three- and four-year-olds are bad for cell phones. This past summer, I had to replace my cell phone because Henry had chewed it so often it finally wouldn't stay on for more than a few minutes. The battery case had a large dent and the charger connector had turned green from the corrosion. So we learned our lesson about letting Henry play with the cell phone.

But that's not all! This morning, as I began my daily schlep getting the children into the car to take them to day care, I discovered that I had buried my car keys under the cell phone and my grocery list. I had Evie in one arm and the diaper bag on the other, so I put the cell phone and the grocery list on the hood of the car and got the keys out. I put Evie in her car seat, looked at the cell phone, and thought to myself, "I have to make sure to get that off the car." I finished strapping Evie in, turned back toward the front of the car, and saw Henry run out of the house onto the snow with no coat and no shoes. (Yes, I had put his shoes on once, but that means nothing to the boy who would rather be barefoot.) At that point, I forgot entirely about the cell phone, and I didn't remember it again until I had driven several miles. I wish the cell phone well, because I do not believe I will ever see it again.

New Theory of Autism Genetics

2007-12-26T22:13:00.000-08:00

I just joined the Interactive Autism Network, a site that coordinates and supports research on autism. They collect information from parents and they link parents up with current research projects. They also have extensive information resources. I found a fascinating article on a new theory of the genetics of autism. It offers a plausible theory for the vast genetic variation between people with ASDs, and the fact that sometimes ASDs seem to come out of nowhere, genetically speaking. In our case, I suspect that Mike and I are carriers since there are people with mild ASD-type behaviors on both sides of our family. I will be curious to see, though, whether this theory can account for the differences in severity of autism and differences between the disorders (verbal Asperger's kids vs. non-verbal autistic disorder kids, for example).

Why this blog?

2007-12-26T21:25:00.000-08:00

Well, three reasons. One, I have a lot of friends and family that live in distant corners of the U.S., and some of them may want to know what's going on with our family from time to time. Two, I have a little boy who has autism, and this blog is an opportunity to get good information to the people I care about (Jenny McCarthy, thank you for raising awareness, but we need some science behind the hype). And three, sometimes when you're trying to raise a child with autism, you just need a forum to throw your madness out to the world, even if no one is listening.

I opted for the blog route rather than MySpace or FaceBook because I wanted everyone to be able to view it easily without having to sign up for a service they might not want. Because this blog is public, though, I will try to keep identifying details private--I'll use first names only, for instance. Let me know if it's working for you.

That's my raison d'etre--for those of you who view this blog but don't know my family personally, I hope you get something good out of it.

Welcome to Deb's Blog

2007-12-26T15:44:00.000-08:00

Hello!

This is my initial post for this blog, and I can't say I've got a lot to report just yet. However, I will be creating my end-of-2007 post soon, so keep an eye out for that.

Thanks for visiting my blog!