Serenity Now!

As my kids are getting older I’m finding myself in an unexpected position. You see, five years ago, when the diagnoses were coming fast and furious, I went through somewhat of a crisis of faith. So many challenges were cropping up. Fears for my kids’ futures began to loom large. I grieved the loss of my vision for my family. But then came a period of relative calm. I came to a clearer understanding and acceptance of our situation. I resolved to fight for my kids’ rights at school. I determined that nothing would come between Katie and me as we took up the challenges that we faced. I had, to a large degree, made peace with it all. Yes, it was going to require extra work to help our kids be successful, but by gum, we were going to do it. We were going to be the autism family!

But there’s something about this autism thingy that took me by surprise. It shifts and swirls. It’s never the same thing year after year—or month after month. I’m finding myself surprised at some of the challenges my kids are facing as they get older. Some are completely new, while others are just more intense versions of what we saw a few years ago.

So while I honestly have made peace with a number of aspects of our family’s make-up, I’m also feeling more at war with others. Not war as if I’m fighting against my kids, mind you. More like a war within myself in terms of embracing our latest “new normal.” Let me try to explain.

Serenity Now . . .

I’ve made peace with the fact that my kids are going to be different. In many ways, I enjoy their differences—their quirky take on life, their brutal honesty, the innocence with which they approach life. I’ve also made peace with the fact that I’m going to be advocating for them and teaching them to advocate for themselves for quite a few years to come. Even though it sounds like a cliché, different, not less really does describe our kids as well as the way we look at them.

I’ve made peace with the fact that my family is going to stick out, and not just because there are so many of us. For instance, on those rare occasions when we go out to eat, I’ve come to expect the unusual. Like one kid will get up and start wandering around the restaurant because he or she can’t sit still. Or another will have to go stand outside halfway through the meal because of sensory overload. Or a third will end up curled up on his chair or under the table to avoid the noise. People will stare, but it doesn’t bother me anymore.

I’ve made peace with the fact that members of our extended family, well-intentioned and big-hearted as they are, won’t always get it. It doesn’t bother me that I’ll probably be explaining things until the day I die. It doesn’t bother me, either, when one of them offers unsolicited advice based on what works for his or her neurotypical child. It doesn’t even bother me that our kids aren’t involved in all the extracurricular activities that their peers enjoy. That’s probably because I’ve also made peace with the fact that we’re going to be spending more time in therapists’ waiting rooms than on soccer fields and tennis courts.

Finally, I’ve made peace with the fact that money will always be tight. With therapies and related health problems, our expenses are more than the average family’s. Plus, we’ve got six kids!

Insanity Later . . .

I haven’t made peace with the thought that our kids still have a long way to go. Now that our oldest two are well into adolescence, I’m getting a sense of the wild ride that comes when you mix autism with hormones. I’m also getting glimpses of the difficulties they’ll face as they lurch toward independence. I don’t know if I’ll ever be ready for those. Schools have behavioral counselors. Churches usually are welcoming, understanding places. But employers—well, that’s a completely different story.

I haven’t made peace with the other diagnoses that have come attached to our kids’ ASD. It’s bad enough that they have social and communication deficits. Do they really have to deal with crippling depression, intense mood swings, OCD, and emotional dysregulation? Does it really have to be so hard for them?

I haven’t made peace with the fact that many of my kids will find it hard to establish and maintain relationships in the real world. The thought of them being alone kills me—even more than the thought that some of them may never leave home. It kills me to think about all the people who will overlook how cool and kind and sharp and loveable our kids are. Our kids deserve to be loved!

Finally, I haven’t made peace with the way I let our ASD-dominated life close in on me. We don’t often do things as a family, because some of our kids will have a hard time. We don’t live too far from Washington, DC, with sites like the White house or the National Air and Space Museum. But a few of our kids simply cannot handle crowds. So we don’t go. Our hometown is surrounded by mountains and woodlands. But a few of our kids become very anxious when exposed to the sounds and smells of nature. So we don’t go. Just the idea of taking some kids to the movies makes me break into a cold sweat. I know there are ways to help them through all of this. I also know which ones might do well in a museum and which ones might do well in the woods, so I can always divide and conquer. But I just don’t have the fight in me. I’m often too worn out by the daily challenges of ASD life to even consider trying something new.

Dammit!

I know, I know. I’ll probably end up making peace with these things, just as I did with the others. I know, too, that God isn’t finished with me or my kids yet. But dammit, wouldn’t it be nice to catch a break every now and again? Does everything have to be so difficult?

I guess in some ways I’m like every other parent. I want the best for my kids, and I hate it when they struggle. The only difference is that my kids have more struggles than the average kid, so I have to be stronger to help see them through it.

And believe me, I will. Just let me catch my breath first.

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.

Blues Radio

web-maxell-blown-away-guyYesterday was an easy Saturday, when I had the luxury of running a few errands on my own. Normally, I enjoy these rare events when I can get out and knock a few things off my to-do list. But today was different. I just couldn’t slow down my racing mind as I drove around town. Like a car radio that was stuck in “Seek” mode, I kept changing stations from one worry to another.

<click> To thoughts about one of my daughters, whose perseverations and OCD-like anxiety have increased dramatically the past few months. On the short, ten-minute drive to her tumbling class last week, she asked Katie over and over and over again, “Are we going to be late? I can’t be late. Please hurry up, Mom, I don’t want to be late. My friends won’t like me if I’m late.” (Katie left ten minutes early to stave off these worries—but to no avail.)

<click> To thoughts about another son, who can’t control himself when a cascade of negative emotions comes over him. The slightest word of correction will send him into a rage, as will the smallest disappointment or denial of a preferred activity. I have worked and worked with him, trying to teach him “cooling thoughts” and self-calming activities, but none of it helped. Now we have to turn to medication to help regulate his emotions.

<click> To thoughts about how to convince a glacier’s-paced school system to give my son the help he needs in social and pragmatic language skills. He’s a whiz at simple mathematics and spelling, but he doesn’t always get nonverbal cues, and he can have a hard time expressing himself clearly. The inferential thinking involved in reading comprehension and word problems is a challenge for him, but his teachers are reluctant to do more, since his other skills are buoying up his grades. “He’s not failing, so what’s the problem?”

<click> To thoughts about the son who can spend hours at a time in his room watching his favorite YouTube personalities talk about video games. His self-isolation is giving him a short temper with his siblings and keeping him from the few friends he has. But it’s like pulling teeth to get him to interact.

<click> To thoughts about finances and all the visits to therapists, psychiatrists, counselors, and doctors for everyone. And then there’s the private, Aspergers-only school our two oldest ones attend—and which at least one more will likely end up in.

<click> To thoughts about our daughter the hoarder and what it’s going to take to get her to part with some of the things she has collected—or at least organize her bedroom so that we can see the carpet. And to thoughts about what makes her so anxious that she feels such a deep need for all these toys. For a recent overnight trip, she stuffed more than twenty of her plush Pokémon figures into a backpack just to keep them by her side. They never saw the light of day, but she refused to be parted from them. “They help keep me calm.”

Daddy’s Home!

By the time I had finished my run and was pulling into our neighborhood, I was feeling pretty depressed. So many unanswered questions. So many problems needing to be solved. So many signs pointing to the challenges my kids have yet to face. (Not to mention, my errands were a bust. No store I visited seemed to have anything I was looking for.)

This is what it can be like living with autism and Aspergers—especially in a world that reduces things and people down into their various components. You wind up seeing everything in terms of the goal, the challenge, the problem, the next “thing” that needs to be addressed. With so many kids on the spectrum, Katie and I have to juggle a variety of diagnoses and an even wider array of manifestations of them. So it’s easy to focus on the problems and miss out on the bigger picture.

It took me a while to come back down to earth and remember that my kids are more than the conglomeration of their problems. It helped a lot when, as I walked through the front door, our youngest popped up off the sofa and ran to me, his face beaming with delight. “Daddy! You came home! I missed you so much!” Then his brother, four years older, came down from his bedroom and shouted, “Yay! Daddy’s home!” and then began jumping up and down with great gusto and doing his signature spinning headstand on the sofa.

None of the challenges went away, of course. They are all very real and still demand my attention. But none of them can overshadow the innocence that these kids have. Even my oldest two, for all their adolescence, have a childlikeness about them that melts my heart. They all have their melt downs and tantrums, but they still have that wide-eyed wonder and openness that tells me there’s still loads of hope. It’s when they shut out the world—or shut me or Katie out—that I need to be concerned.

I suppose the fact that I see my kids in such a reductive way every now and then is, I suppose, to be expected. I’m just glad that today my kids helped me move beyond this partial vision so that I could see with my heart and not rely on my racing mind.

The next time I’m out on my own, I’ll listen to NPR.

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!