Soooo Tired . . .

Madeline Kahn Tired

How tired am I? Let me count the ways.

Physically, I’m tired from the early morning wake-ups from the youngest and the late-night conversations with my wife about the kids’ various challenges.

Emotionally, I’m tired from managing melt downs, redirecting perseverations, calming anxieties, and comforting socially unaware kids.

Mentally, I’m tired from attending doctor appointments with my kids and trying to keep track of which child uses which medicine, and the various effects and side effects each one experiences.

Organizationally, I’m tired from trying to figure out how to schedule therapy sessions for the kids and still keep on top of my fifty-hour-a-week job, as well as take care of Katie. And myself.

Motivationally, I’m tired from trying to help the kids who tend toward anxiety to keep moving forward and not give in to their frustrations.

Spiritually, I’m tired from battling dealing with my own bouts of fear, frustration, and anxiety.

Yes, I’m tired. And if I’m tired, just imagine how tired my kids must be. But that’s a different subject for a different post.

An Attitude against Platitudes.

I don’t like to complain because I don’t want sympathy or, worse, pity. But the plain truth is that this autism parenting gig is hard work. There are so many twists and turns to ASD that it’s next to impossible to try to plan for the next challenge. Because every person with autism is mind-bogglingly unique, there is no reliable road map to guide you through the terrain. And because most other ASD parents are worn out traveling their own path, it can be hard to connect with fellow travelers—at least anyone  who has the time and energy to listen. (Thank God for Facebook!)

So if I don’t like to complain, why am I . . . complaining? Because every now and then I like to offer a corrective to the platitudes that special-needs parents can hear. Sayings like:

  • I don’t know how you do it.
  • God only gives special kids to special people.
  • You must be really strong to handle all of this.
  • I could never do all that you have to do.

PTSD Parents.

Mind you, these sayings are usually offered in good faith and come from a place of love and respect, so I don’t want to dismiss them—or the people who say them. But idealizing special-needs parents can be similar to the way we lionize the men and women in the military. We call them heroes and warriors and guardians of our freedom. And usually that’s what they are. But such vaunted language can cloak the emotional and psychological trauma that many who have been in combat have experienced. We sanitize the brutality and dehumanizing power of war by putting “Support Our Troops” magnets on our bumpers and applauding soldiers in the airport. But these very soldiers are bearing a burden few of us can imagine—and the Veterans Administration is woefully underfunded..

I don’t mean to compare my experience to that of someone who has been shot at, or worse, who has had to kill a fellow human being. But according to a University of Wisconsin study, parents of special-needs children often exhibit stress levels comparable to combat soldiers. In fact, many of these parents are diagnosed with PTSD or situational depression. And looking back on some of the instances of high drama we’ve experienced over the years, I can easily see how this is the case. As I said above, this is hard stuff.

But back to the not complaining point. The thing is, we don’t think about how hard it is all the time, so we don’t usually complain. It usually happens only when we get really, really tired. Usually  we’re just too  busy trying to keep up and keep awake. It’s not that we’re heroic; it’s just that we love our children. Like any other parent does.

Nothing Special.

So to those who say, “I don’t know how you do it,” the answer is easy: I’m not aware of any alternatives. You don’t count the cost when someone you love needs you. You just do what you need to do.

Anyway, thanks for reading. I didn’t have a major point to make. I just wanted to get this off my chest. Katie and I are not heroes. We’re not special or extra blessed. And I’m sure most of you, if not all of you, would handle our situation just as well as we are doing—and maybe a whole lot better! We’re just everyday people trying to take things one day at a time. And we’re tired.

So. . . . Very. . . . Tired.

P.S. For those who don’t recognize it, the picture at the top is of the incomparable Madeline Kahn, as Lili von Shtupp, singing the song, “I’m Tired” in Mel Brooks’ Blazing Saddles. Here’s a link to the song. And if Mel Brooks isn’t your thing, well that’s a crying shame. Let me offer you a different visual.

Tired-Minion-Coffee-Best-Funny-iPAD-iCloud-WallPaper

Dude, That’s So Intense

iPad Boy

Isn’t this a cool picture? That’s our eight-year-old boy playing Fruit Ninja on the iPad. This is quite a common sight in our home. It’s just one of many contortions this kid does. He’ll fold himself backwards over the back of the sofa. Or he’ll have his legs crossed, yoga-style, and suspended in the air while he rests on his shoulders. Or he’ll curl himself up in a ball, with one leg sticking out at a highly improbable angle. Or a combination of many different poses. He’s never in the same position for more than a couple of minutes.

When he’s not twisted up, he’s like a perpetual motion machine—hopping, dancing, mock-battling, wrestling with his reluctant little sister. Dinner is always difficult for him. He’s usually the first one out of his seat (within three to five minutes), running around or hopping up and down. Even taking a walk can be an exercise (sic) in unique movement.

A Fun Walk

He’s not the only one, either. His next-oldest brother is very much the same way:

Upside Down Buddy

Now, this is a marked contrast to his younger brother who will, at odd times, simply plank.

Plank BoyKatie and I think he does this as a coping mechanism when he gets overwhelmed. He just shuts down for a few minutes, presses his internal reset button, and then he’s back at it again. He’s just as hyperactive as his brothers, but he has a different way of dealing with overstimulation.

Funny enough, though, if you put any of these kids in front of a computer on Minecraft, they can sit still, absorbed, for hours. They may be at odd angles again, but they’re still.

Isaac Newton Explains.

So what’s going on?

Katie and I think it’s related to something called Intense World Theory. Pioneered by a pair of neuroscientists in Switzerland, Intense World Theory posits that people with autism are hyper-aware of everything going on around them and within them. ASD folks feel everything so intensely—both physical and emotional—that their attempts to compensate need to be just as intense. It’s like an autistic version of Newton’s Third Law of Motion: For every action, there has to be an equal and opposite reaction.

So our armchair contortionists are merely reacting bodily to the busyness around them and in their minds. Their world is so intense and so full that they react to it in a similarly intense, involved way. Or it’s so intense that they need to shut it out at times, as our little one does, so that they can press their internal Reset button.

This also explains their ability to become so absorbed in the world of video games. It can be very loud and frenetic, but it is also limited and contained. Just a small screen (okay, small-ish) that they can turn on or off. And as noisy as it is, it’s also pretty predictable. So there’s an element of safety and comfort there. Of course, engaging in the virtual world doesn’t really help them get out their pent up energy. It only helps them suppress the need for it and, therefore, suppress their need to (over)react to it.

It’s Just Too Much!

All this can be kind of cute, but there’s another, more troubling, side to it.

Take my oldest son, for instance. He likes to go to Teen Gamers, a monthly gathering of middle- and high-school students hosted by the local library. It’s a place where kids can hang out, play video games, and have pizza, all under adult supervision. I don’t mind that it’s all about video games. Considering his social anxiety, it’s a golden opportunity for him to expand his social circle.

But as much as he enjoys himself there, as soon as he comes home, he hurries up to his bedroom and spends the next couple of hours in virtual seclusion. The same can happen after a long day at school or after we all go somewhere as a family. In fact, after just about any situation where he is out of his comfort zone, the boy high tails it to his room, turns off the lights, and burrows under the covers with his 3DS or his iPod Touch. The outside world is too much for him to handle, and he needs time to decompress.

Something similar happens with my older daughter, although with her, the reaction isn’t always delayed. She is just as likely to melt down right in the middle of a store or restaurant as she is to wait until we get home. That’s why we’ve come to expect her to spend a considerable amount of time in the bathroom at church on Sundays.

That’s how intense the world can be for these two. It can actually hurt to be engaged in it for too long.

Silly? Stubborn? Sullen?

I like this explanation a lot. It helps me see that my kids are not being antisocial—at least not on purpose. It also gives me some more insight into the way their brains are wired. And most important, it helps me adjust my plans and expectations.

I know, for instance, not to expect them to be able to handle a marathon day at Disney World. I should be happy to get three hours out of them—and that’s with one or two breaks so they can regroup. It also helps me understand what school is like for them. They spend six hours trying to maintain an ordered exterior while everything around them (and within them) feels like it’s set on overdrive. Of course they’re going to need some serious decompression when they come home—whether that means time on the trampoline or some mini-hibernation. There’s no way we should expect them to do anything productive like homework right away. And on days when there’s a lot of homework, we know we need to break it up into smaller chunks—or tell their teachers that they’ll finish it the next day.

Now, I know that they can’t expect this to go on forever. They’re going to have to find other ways to cope when things get too rough. There aren’t too many workplaces that have yoga mats or dimly-lit quiet rooms for decompression. And God help you if you take too many breaks! So we are trying to teach them how to increase their tolerance and find other, less obvious, ways to deal with all that frustration and overstimulation. It’s all part of living with ASD. They’re not being silly or stubborn or sullen. They’re just trying to survive.

Words I Wish I Never Heard: Perseveration

Poodle (our favorite nickname for our six-year-old girl) has tumbling class every Friday at 5:00. She is a very flexible, high-energy little sprite, and she loves the chance to jump, roll, run, and play with other kids her age. The place where she goes is an easy fifteen-minute drive from our home, and she’s been there a number of times. Still, the following sequence of events happens just about every Friday afternoon.

4:15 p.m.

Poodle: Mommy, I have to get changed for tumbling. I don’t want to be late.

Katie: We’ve got lots of time, Poodle. I’m in the middle of something. I’ll help you in a few minutes.

Poodle: No, Mom. I don’t want to be late. You have to help me now.

Katie: Hang on just a couple more minutes. We won’t be late. I promise.

Poodle (her voice quavering a bit): Okay. I just don’t want to be late.

4:20 p.m.

Katie: Okay, Poodle, let’s get you dressed. Get your leotard from your room and bring it down here.

Poodle: I can’t do that! The boys will see me.

Katie: No they won’t. We’ll go in my bedroom and close the door.

Poodle: Are you sure? I don’t want the boys to see me naked.

Katie: I promise I’ll close the door. I’ll even lock it if you want.

Poodle: Ohhhh, Mommy, I don’t know. I don’t want the boys to see me naked.

Katie: I promise they won’t. Now get down here so we can get you changed.

Poodle (nervously): Okay. I don’t want the boys to see me naked. You’re sure we won’t be late?

Katie: I promise.

4:25 p.m.

Katie: Go get your Crocs so we can get going.

Poodle: I don’t know where they are. Let’s just go. I don’t want to be late.

Katie: It’s okay, Poodle. We have lots of time. Go and find your Crocs.

Poodle: No, Mommy. I don’t want to be late. I can’t be late. They won’t like me if I’m late. Let’s go!

Katie: I don’t want you going outside without any shoes. It’s raining, and it’s chilly. Find your Crocs, and we’ll get going.

Poodle: Please, Mommy! I don’t want to be late!

Katie: Tumbling is only 15 minutes away, and we have more than 35 minutes to get there. We’ll be fine.

Poodle: No, Mommy, no. We need to go now. I don’t want to be late!

Katie: Fine! Get in the car. I guess I can carry you into the tumbling studio.

Poodle: Okay. I don’t want to be late.

4:30 p.m.

Poodle (wringing her hands): Mom? How long before we get there? I don’t want to be late.

Katie: Fifteen minutes.

Poodle: Is that enough time?

Katie: Yes, it is. We’ll get there with fifteen minutes to spare.

Poodle: Are you sure? I don’t want to be late.

Katie: Yes, I’m sure. Look how far we’ve gone already. We’ll be there with lots of time.

Poodle (suspiciously): Okay, if you say so.

4:33 p.m.

Poodle: Are we getting close? I don’t want to be late.

Katie: Yes, we’re getting close.

Poodle: Will we be there on time?

Katie: We’ll be early.

Poodle (twisting a lock of her hair): Are you sure? I don’t want to be late.

Katie: Yes, I’m sure.

4:40 p.m.

Poodle: When does tumbling start?

Katie: In twenty minutes.

Poodle: Will we be there in time? I don’t want to be late.

Katie: I told you already, we’ll be early. We’re almost there.

Poodle: We’re not going to be late, are we?

Katie: No, we’ll be early.

4:44 p.m.

Poodle: Are we going to be on time? I can’t be late. They don’t like it when I’m late.

Katie: Look up there. See that traffic light? The studio is just beyond that light. We’ll be there as soon as the light turns green.

Poodle: No we won’t. We’re going to be late.

Katie: Don’t worry, Poodle. When the light turns green, we’ll be there.

Poodle: You’re going to go as soon as the light turns green?

Katie: Yes, I will. Then we’ll be at tumbling.

Poodle: Ohhhh, how much time do we have now? Are we going to be late?

Katie: We have fifteen minutes. All we have to do is cross this intersection. Then we’ll be there.

Poodle: Are you sure? I don’t want to be late.

Katie: Yes, I’m sure, Poodle. We’ll be there in less than a minute.

4:46 p.m. [The light turns green.]

Poodle: How much time now, Mommy?

Katie: Fourteen minutes.

Poodle: Are we going to get there in time?

Katie: Yes, we’re pulling into the parking lot right now.

Poodle: We won’t be late?

Katie: No, we have lots of time.

4:47 p.m. [Katie carries her, shoeless, into the studio.]

Poodle: We’re not late, are we?

Katie: No, we’re not.

Poodle: That was close, wasn’t it?

Katie: I guess so.

Poodle: Okay. Are you sure Daddy is going to be on time to pick me up?

Katie: <sigh> Yes, I’m sure.

Sad News for Researchers

Sorry it’s taken me so long to get around to this. It seems that about a month ago, a freezer at the Harvard Brain Tissue Research Center failed, resulting in the thawing of close to 150 brains that had been donated for research. Of those affected, more than 50 were dedicated to autism research. The Boston Globe has up the story, which you can read right here.

This is a significant setback for autism research, as the brains in this freezer made up a full one-third of the total brains in Autism Speaks’ Autism Tissue Program. Scientists estimate that it could take up to ten years to obtain that many brains from generous organ donors.

Harry Kimball, at Brainstorm, a blog hosted by the Child Mind Institute, found a silver lining in this tragic event:

“Now, this loss may turn out to be a real blow to the current state of autism research—but it also illustrates just how far we have come. Foul play or malfunctioning freezer units aside, this incident gives us insight into a coordinated research effort that teams a leading advocacy organization with a top-tier research university and federal funding. We see families affected by autism and other psychiatric and neurological disorders eager to turn their own personal tragedies into opportunities for others. It is sad that something went terribly wrong, but at least it happened in the context of things being done so right.”

I found another silver lining. This loss highlights the need to support autism research. Programs like the Autism Tissue Program, AGRE, and the Interactive Autism Network rely largely on private donations. NIH gives some money, but it doesn’t come close to covering the ambitious projects that these organizations are undertaking. I know I’ve got the Make Me Go Blue challenge on this blog, and it’s got a fun side to it. I’d get a real kick out of dyeing my hair blue, and I’m sure a lot of folks would get a good laugh out of the pictures. But this is serious stuff. Autism diagnoses are ballooning, and scientists are only chipping around the edges of what’s causing the epidemic. So please consider making a donation. It’s a long road toward understanding this vexing, pervasive disorder. But every step along the way gets us that much closer. Thanks.