The Struggle Is Real

 

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Remember my story about my girl having a couple of seizures last summer? Remember my story about how hard it was for her to go to Mass during the summer? Well, the saga continues to unfold. Continue reading

How I Learned to Love the Drugs

Kids' Meds

Here’s a snippet of a conversation I had yesterday evening with my little girl.

Her: Daddy, why does F take medicine?

Me: It helps him not feel so sad all the time.

Her: Okay, so why does L take medicine?

Me: It helps her focus in school and not be too worried.

Her: Well, what about C? What does his medicine do?

Me: It helps him keep calm in school and at home.

Her: And what about B? He takes medicine too.

Me: His medicine helps him not get too angry.

Her: So when will I start taking medicine?

With an internal sigh, I brushed off her last question and changed the subject. I didn’t have the heart to tell her that we were going to start her on a drug trial in a couple of weeks—to help her deal with her anxiety. I figured she’d have plenty of time to think about it when the trial actually began. Nor did I tell her that her little brother was going to start his own trial around the same time. Again, the less said, the better.

So there it is. By the middle of May, all six of our children will be on some kind of psychotropic medication.

Surprised by Sympathy.

It’s interesting. I shared this little dialogue with a couple of autism parenting support groups I belong to on Facebook, and I was kind of surprised by some of the comments. Many posted the symbol for a virtual hug: (((you))), and a few said something like “It’s hard” or “So sad.” But my wife, Katie, had the best response: she laughed. It was, after all, a cute exchange, and it showed how innocent our girl is.

It never dawned on me that this conversation would elicit words of sympathy, but now that I see it through these commenters’ eyes, I think I get it. See, I’ve grown so used to our routine that it seems, well, routine to me. I don’t think of it as unusual, hard, or sad at all. In fact, it’s the thought of not medicating my children that fills me with fear and trembling—for my sake as much as for theirs!

An Evolution of Sorts.

It wasn’t always this way. Back in 2007, when our pediatrician first prescribed a medicated patch to help one of our girls with ADHD-like symptoms, I resisted mightily. I hated the idea of introducing mind-altering chemicals into her sweet little brain. It didn’t help that the doctor told us we’d likely need a prescription steroid to help control the skin irritation that often accompanied the patch. Great! A medicine to counteract the side effects of the original medicine. What could be better? Eventually, however, I gave in.

When the patch didn’t work, we began a three-year odyssey of various other trials (under the direction of two different pediatricians and two different psychiatrists) to help her not only with ADHD but her growing anxiety. One made her giddy and made her gain a lot of weight. Another gave her terrifying nightmares. A third got her so agitated that she ended up biting me on the shoulder in the middle of Mass one Sunday. There were other failures as well, but I can’t recall them now.

It wasn’t until we began working with our third psychiatrist that we found the right combination. Her anxiety diminished considerably. She lost the extra weight. Her grades began to soar. And her demeanor at home, while still needing some help, became much more manageable. The tide was turning, and I was happy—happy enough to let three of our other kids begin their own medicine trials. Thanks be to God, there was a lot less initial drama with them and generally positive results.

Six for Six.

So now our two youngest ones are on the verge of getting prescriptions. Their therapist tells us that she can do only so much with them as they are right now. The little guy is too hyperactive and the little girl is too nervous for any talk therapy to have a lasting effect. “If we can just take the edge off,” she told us, “we might be able to make some headway. But as it is, the cascade of emotions is too strong for them to work through.”

It was a bitter pill to swallow at first, this thought that all our kids need psychiatric medicines. Not only does it get expensive, but it emphasizes their otherness and the challenges they face. Still, it didn’t take me long to adjust. I’ve been down this road a few times already! Plus, the sheer everyday nature of the routine helps a lot. Maybe that’s why my little girl can be so nonchalant about it. She has seen her siblings take medicine twice a day for as long as she can remember. It’s just a part of who we are and how we live.

Embrace the Mess.

That’s probably the way it should be. For everyone. You work and work and work until you find what works for you. You let go of the “picture perfect” life you had envisioned for yourself and your family, and you embrace the beautiful, horrible, glorious, maddening, sanctifying mess that God has given you. And as you do, you find that he’s embracing you as well.

He’s probably laughing, too.

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: Comorbidity

When a parent receives the news that his or her child has an autism spectrum disorder, only one word sticks in the brain: autism. It’s a scary word, filled with mystery and foreboding, and it takes a while for parents to wrap their brains around what it means for their child.

But over time, the parents do get used to the word and the various ways it is used—autism, autistic, autism spectrum, ASD, etc. They also get used to the way their child manifests the various social, language, and emotional symptoms that are part of the autism spectrum. More or less, they begin to make peace with the diagnosis. They learn how to reorder their lives to accommodate their child’s special needs, and they do everything they can to help their child grow and thrive. They grieve the loss of what might have been, and begin to look forward to what will be—with all of its highs and lows.

That’s all well and good. But over time, other words begin showing up and demand entry into their vocabulary. Words that bring with them a host of new challenges, fears, and road blocks. Words like stimming and perseveration become part of the parents’ everyday conversation. They are part of the universe of autism spectrum disorders, and every child touched with ASD manifests these behaviors in one way or another.

But there’s another word that shows up, whether early or late, and it has the potential to eclipse all its rivals: comorbidity. Even the sound of the word is chilling, with its hints of gloom and even death—to be morbid with, or something like that.

But while comorbidity is not a pleasant word, neither is it fatal. The definition runs like this: “the simultaneous presence of two chronic diseases or conditions in a patient.” It means that a person may carry two or more psychological or developmental diagnoses, as in the following sentence: “Bobby has a primary diagnosis of attention-deficit disorder, and a comorbid diagnosis of obsessive-compulsive disorder.”

ASD and Comorbidity.

According to a recent study done at Boston University, the rate of comorbidity in people with ASD is frighteningly high. The study found that:

44% of children with autism also had some kind of specific phobia, like fear of crowds.

37% had obsessive-compulsive disorder

31% had ADHD, and

25% had depression.

In fact, according to the researchers, “Seventy-two percent of the children in our study had at least one DSM-IV Axis I psychiatric disorder in addition to autism.”

More than 30% had two disorders comorbid with autism.

And nearly 10% had three comorbid conditions.

Even more chilling was this statement:

The frequency of multiple comorbid diagnosis we report is likely to be an underestimate. Parents were less likely to complete the later sections of the interview when multiple types of psychopathology were present in their child because it typically took longer to complete the interview.

No one knows exactly why the comorbidity rate is so high among people with ASD. Is it a brain chemistry problem? Or does dealing with ASD cause other disorders like depression and OCD? The jury is still out on this, and it may be for quite some time.

So not only do people with ASD have to navigate the troubled waters of autism; most of them also have to deal with other challenges. And what’s worse is that these comorbid disorders don’t just lurk in the background. They can often become the primary concern.

Paralyzing Depression.

This has definitely been our situation for the past few months. One of our sons has been diagnosed with depression, general anxiety disorder, and executive dysfunction, along with an inattentive type of ADHD. And as I said above, these comorbidities have a way of overshadowing the ASD deficits.

In this boy’s case, his depression and anxiety have become so strong that they have affected him physically, not just emotionally. A couple of months ago, for instance, he became so anxious that his legs literally shut down. He couldn’t walk. He couldn’t feel anything in them. He couldn’t move them at all. Two days in the hospital, an MRI, and a neurological work-up revealed absolutely nothing organic at the root of his paralysis. It was completely stress related, “all in his mind,” but not in a conscious way at all.

So here’s the challenge: do you treat the depression? Of course you do. But what if the stress is caused by the challenges this boy faces because of his ASD? You have to help him deal not just with his stress but also with the ASD issues that caused it in the first place. In this boy’s case, he has a hard time coping with all the noise and chaos of the crowded hallways in his school. It’s such an assault on his senses that it turns him into a jittery mess.

He has to deal, as well, with the social awkwardness that comes from his communication deficits. Classmates just don’t get him, and he doesn’t get them, so he feels his otherness deeply. All he needs is a couple of thoughtless remarks from his adolescent peers, and he’s off to the races. No wonder his body shut down last November! It’s as if his legs were telling him, “We can’t take any more. Please give us a break!”

So here we are, two months and nearly three thousand dollars in medical bills later, hoping that we’ve got a handle on things. We’ve increased his time with a counselor. We’ve taken more steps at home to help him accept his ASD challenges. We’ve gone out of our way to make sure he knows how much we love him and enjoy him. Anything to help him extinguish the negative thoughts that are constantly seeking entrance into his mind.

A Box of Chocklits.

But there’s another thing about these comorbidities. Once you’ve got one under control, another one pops up. In this boy’s case, the depression seems to be staying in the background, but the ADHD has now taken center stage. Homework assignments are being missed. Important papers from school are not making their way to us. Simple things like hygiene and general self-care are being forgotten. Now, instead of managing his mental-health issues, Katie and I have become his surrogate frontal cortex—that part of the brain that manages organization, short-term memory, and executive function.

Every week seems to bring a different challenge, another selection from Forrest Gump’s box of chocklits. And all the time, the ASD remains in the background, a kind of cantus firmus that shapes every aspect of his life. Bit by bit, we’re helping him make sense of it all. Bit by bit, we’re giving him the tools he needs to face down these challenges. And bit by bit, he’s making progress. But it’s slow. It’s arduous. And it’s sometimes painful.

It’s also no wonder that he seeks escape in his video games—to the point of them becoming almost and OCD issue. Yup, another comorbidity!