The Last Bottle

“Do you mind checking the dosage on this one? I think I put too many in the boy’s cup this morning, so I told him to take only one. I think we need to put the extra one back in the bottle”

So said my wife when I came down for breakfast, as she handed me a medicine cup.

IMG_2592

This is how we dole out the kids’ medication. Each kid gets his or her own cup with the proper medicines at the proper dosages. Normally, this is my job every morning and evening—a job that involves taking every pill bottle out of our “apothecary box,” reading each bottle to verify who gets what and how many of each, and placing the appropriate medicines in each kid’s cup. It also involves getting out the Gatorade for the one kid who can’t handle the taste of his medicine with water, and getting out the milk for the other kid who can’t handle Gatorade or water. In the morning it also involves bringing two of the boys their medicine in bed so that it can begin working in them before they join the rest of us. Depending on how awake I am, this can take between five and ten minutes.

IMG_2591

Well, this morning I was late coming downstairs, so Katie took over the job. Only our doctor had just changed the dosage on one of the prescriptions, and she couldn’t remember what it had changed to. Hence the extra pill.

So I sat down at the table and began my usual ritual of sorting through the apothecary box to find the right bottle so I could put the extra pill away. A few minutes later, this is what the kitchen table looked like. (For those of you not patient enough—or not anal enough—to count, that’s eighteen bottles there.)

IMG_2593

Why eighteen? Because, in keeping with the laws of the universe, it was the last bottle in the box. It’s always the last bottle in the box. Just once, I’d like it to be the first bottle. Or the fifth. Or the eleventh. Hell, I’d be happy if it was the seventeenth. But no, it’s always the eighteenth. <sigh>

 

Words from the Unwise

Lawsuit-Officer-handcuffed-elementary-school-students-with-ADHD

So this bit of news has been making the rounds the past couple of days among autism and other special-needs parents. It seems that in two unrelated incidents, a police resource officer in a Kentucky grade school put an eight-year-old boy and a nine-year-old girl in handcuffs in order to restrain them—cuffing them around their biceps because their small hands would slip through the cuffs. Both students have ADHD, and the girl also had a history of some kind of trauma.

The school was aware of the children’s diagnoses, as was the police officer who cuffed them. Both students had been removed from their classrooms because of disruptive behavior, and when the principal was unable to contain the situations, the officer took over, employing the handcuffs. (Note: watch the video at the top of the article at your own risk. It’s very disturbing.)

According to the report, the girl was especially upset by the situation, to the point of needing psychiatric treatment in a hospital. Understandably, both sets of parents are suing the officer involved.

This is a very sad story, especially in a time when attention has already been focused on police officers abusing their power and mistreating people who live on the margins. These incidents may not rise to the level of Freddie Gray or Michael Brown, but they come pretty darned close.

I don’t want to say much about the incidents—I don’t like stating the obvious or dwelling on people’s stupidity. But I do want to look at the article that described the situation. Actually, not the article (although it does have a couple of really embarrassing typos), but the utterly irresponsible headline that was assigned to it:

Lawsuit: Officer handcuffed mentally disabled kids as punishment.

Disabled? Mentally? What does that even mean? The report only talks about ADHD and some unspecified trauma. It’s not as if the kids had been lobotomized or anything. There’s nothing in the report that indicated the students were “disabled” in the sense that most people understand that term.

It doesn’t take a genius to see how this terminology places a kind of perception filter over the whole story.

“Oh, the kids must have been truly and deeply disturbed.”

“I can understand why the principal let the officer shackle the children.”

“These are mentally disabled kids—it’s not as if they were ‘normal’ kids. I guess it’s okay.”

It may not seem like a huge deal—just a matter of poor wording. But in this time when the Americans with Disabilities Act is celebrating its twenty-fifth anniversary, we don’t need to be going backwards. Remember, it was the ADA that ushered in the era of person-centered language. So we talk about a man with schizophrenia rather than calling him a schizophrenic. We talk about a woman who can’t walk instead of calling her a cripple. And we talk about a child with ADHD rather than calling him mentally disabled. Or at the very worst, we call him a child with a disability.

It shouldn’t be rocket science at this point in our history, and yet here we are. We’re still using hurtful, discriminatory words. Words that justify abuse, fear, and marginalization.

ADHD Hall of Fame.

But that’s not all. Terms like “mentally disabled” give the impression that the kids are slow learners or are academic underachievers. It puts them in a category of “less than,” when there is absolutely no evidence in the article that this is the case. For all we know, these kids could be total freaking geniuses who happen to have ADHD. It’s not uncommon, after all for this combination to occur.

Here, for instance, is a list of some well-known, very successful people who also have ADHD:

  • Virgin Airlines CEO Richard Branson
  • Quarterback Terry Bradshaw
  • Musician Justin Timberlake
  • Pulitzer Prize Winning Journalist Katherine Ellison
  • Comedian Whoopi Goldberg
  • Actress Michelle Rodriguez

Would you call any of them “mentally disabled”?

Words from the Unwise.

It’s possible that the editor who created this headline thought the article would get more views if he or she used a provocative title. Or maybe the editor was trying to allude to the recent police brutality stories. But it was a very poor choice of words. It’s deeply offensive, and it did a huge disservice, both to the story and more important, to the kids.

But hey, I guess we’re making some progress. At least the headline didn’t call the kids retarded.

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.

The Domino Effect

IMG_1729 See that? That’s my Little Guy being as silly (and ADHD) as ever. Not a dinner goes by without him doing something completely and engagingly out of the ordinary. From running around the kitchen table twenty times to dancing in place on the bench to ceaselessly tapping his spoon on the table, he can’t sit still to save his life—and it bothers his older siblings immensely. You know, the ones who are particularly sensitive to noises, extra activity, and anything out of the ordinary. One or another of them will end up shouting at him at every dinner, but he just keeps on keeping on, happily expending his energy.

That’s the fun of having multiple children on the autism spectrum. Some are ultra-sensitive to their surroundings while others are completely oblivious. That usually leaves Katie and me with the unenviable task of trying to mediate between the two factions. It’s not always easy, as the two most averse to noise and other sensory excitement also tend to be the most emotional ones. So they respond with a level of anger and frustration that far outstrips the gravity of the situation—that is, the gravity that we perceive. For them, their younger brother’s acrobatics are thoughtless, careless assaults on their frayed nerves. But for him, being hyperactive is his default position.

And so begins the Domino Effect. Child Number Six’s hyperactivity sets off Child Number Four’s aversion to the unexpected, then Child Number Four begins yelling at Child Number Six, which sets off Child Number One’s aversion to noise, which causes Child Number Two to cover her ears and yell louder, which causes Parental Unit Number One to try to calm down Child Number Six, which only causes Child Number Six to increase his jumping, which . . . well, you get the idea.

A Wild Rumpus.

I wish there were some way to solve this, but for the moment I’m baffled. We could, I suppose, have dinner in shifts, with two kids at the table at a time. But that can eat up a lot of time. Plus, how will they ever learn if we don’t help them work through this stuff? So we’re left trying our best to keep the little jumping bean from pushing too many buttons while also trying to help the older ones practice self-calming and emotional regulation.

Of course, some days are better than others. There are those times when the Little Guy is more subdued, or the older ones are more forgiving. But then there are the times when all Katie and I can do is raise our wine glasses to each other and smile wearily as the wild rumpus unfolds.

And then there are the worst days: when we unthinkingly rush into the fray and end up fanning the flames instead of extinguishing them. That never ends well. We’re getting better at checking ourselves, but there are times when you just can’t help it—or when safety concerns demand a forceful intervention.

Welcome to the Vortex.

This, I think, is one of the hardest things for ASD parents—keeping calm in the midst of a swirling vortex of emotional outbursts. We love our kids so much that we hate to see them upset. But the one causing the upset is another one of our kids, whom we love just as much and who we know has a hard time sitting still. So we’re torn. Plus, as parents, we want to see our kids get along, or at least be civil to each other. That’s kind of hard when they all see each other as threats to their well-being.

So we try the best we can, dreaming of that magical day when all eight of us will remain at the same dinner table for longer than our average of five minutes. Seriously. It’s not uncommon for them to run out of the kitchen not long after dinner has started. Either they’re giddily chasing each other or they’re desperately trying to get away from the noise or they’re taking advantage of the chaos to sneak back to their video games.

Collateral Blessings.

As challenging and dispiriting as this can be, the Domino Effect does have one positive side effect. After the peeling-off, there’s usually one kid still hanging out at the table, and it’s quite common for a conversation to develop. It’s not much, and it’s not long, but it’s real contact. And in a big family like ours, those moments are important.

It never ceases to surprise me the kinds of topics that come up in these impromptu encounters. From our oldest girl’s questions about two girls in her class who seem a little too affectionate with each other (this is 8th grade) to our nine-year-old telling us about the math teacher who yells at his students, we learn a lot, and we can share a little. Sometimes we laugh together, other times we offer advice, and other times we commiserate. But we always try to listen.

As I said, it’s not a lot. But it’s something, and it’s precious. Even our most sensitive kids are able to hang around for a short time—even if there’s full-on chaos in the next room. When they know they have both their parents’ attention, the other stuff recedes into the background. They know we’re listening. They know we’re on their side. They know we love them. And love always wins.

So keep on jumping and stretching and dancing, Little Guy. You have no idea how much good you’re doing!

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!