Tag Archives: depression

Serenity Now!

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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.

Aspie on the Verge

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So here I am, sitting in our local Music and Arts store, typing away on my iPad while my son spends the next thirty minutes in heaven. He knows we’re not going to buy him an electric guitar until he gets a lot better at his acoustic, but he still likes to come here to try out the electrics and to dream.

The thing is, by most calculations, he shouldn’t be here at all. He was rude to his mother. He was verbally abusive to his little brother and sister. And he hung up the phone on me this afternoon when I told him I didn’t want him playing a particularly violent online computer game. He didn’t come up from the basement for dinner, and he gave us some serious lip when we told him that he had to clear the table after he finally did eat.

So why am I giving in to his request? Why am I not withholding this highly desired activity as a consequence for his negative behavior?

Because the rudeness isn’t the whole story. In addition to being obstreperous, he was also jittery, depressed, and anxious. Even the dog, whom he always loves, gave him the heebie-jeebies. Just one whine from her, and he clenched his fists, hunched his shoulders, and covered his ears. “Roxie!” he barked back, “Stop it!” When his little sister turned on the TV just a little too loud, he jerked his head back, winced, and yelled at her. His eyes were red-rimmed and darted back and forth. His breathing was shallow. He paced back and forth around the kitchen, his muscles betraying the tension of a hunted animal waiting for the arrow to pierce him through. I knew that if I didn’t get him out of the house, he’d explode. And that’s never pretty.

I sometimes wonder if I’m just enabling his bad behavior when I do this. After all, it’s possible that he’s manipulating Katie and me. But this isn’t a nightly pattern. There are many evenings when he’s generally okay, evenings when he participates in dinner, does his chores without complaining, and shows at least a little bit of tolerance for his younger siblings. There are also plenty of times when he doesn’t get his way, whether he likes it or not. But still, every time this happens, I wonder if I’m being a bad parent.

I don’t know if I’ll ever get used to this. When your kid is on the autism spectrum, you have to be ready all the time for God only knows what. You never know what’s going to set him off. Maybe he had a tough day at school. Maybe one class was a little too rowdy, and it set him on edge. Maybe a classmate said something mean, and he kept it in, letting it fester, or maybe it was an innocent, joking comment that he misinterpreted. Maybe he was overly tired from staying up too late (which he does on occasion but rarely admits to). Maybe it was nothing special at all. Maybe the ordinary challenges of living in the world have finally gotten to him. Of course, we know some of the things that definitely will set him off, but there are so many unpredictables in everyday life that just about anything could trigger a melt down.

Fast Reset, Slow Reset.

By the time we were ready to go to the store, I was pretty much done. I had been home for a little more than an hour, but that was enough, after a long workday, to wear me thin. This kid’s aspie-on-the-verge shtick had drained me of what little reserves I had left. It was all I could do not to unload on him when he asked me to take him to the store. “Keep it together,” I told myself. “He didn’t mean half of what he said. Just give him this time to reset himself, and it’ll be okay.”

Sure enough, the reset began as soon as we got in the car. Away from the noise and triggers of the house, his mood shifted, and he became the chatty, relatively chipper kid he often is. I, on the other hand, was still rattled from trying to keep the peace at home. I never stop marveling at how quickly our kids can shed their symptoms, oblivious to the effects they had on the people around them. It’s just another example of the social challenges they face–not really “getting” the feelings of other people. So there he was, chatting up a storm, while I was trying mightily to cool down!

So now I’ve got a half-hour to regroup. That’s how much time I’ve given him at the store. I hope it’s enough. For both of us.

Words I Wish I Never Heard: Comorbidity

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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!