Tag Archives: Aspergers

Why We Cry. . .

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kiss_cheeseburgerRecently, a friend at work sent me this story about a girl with autism who was treated very well by the staff of a Chili’s restaurant in Midvale, Utah. Apparently, the Facebook post that this story was based on has gone viral, with nearly 50,000 comments. And I can see why. If you have one or more kids on the autism spectrum, you don’t expect people to go out of their way to help you or your kid. Instead, you get used to the baffled stares, the cluck-clucking, and the occasionally mean comments about your children and your parenting skills—or lack thereof.

For Katie and myself, whenever we contemplate going out to dinner, we have to include a few questions that most families wouldn’t bother to ask. Questions like: “Is the place too dark? Too bright? Is it noisy or quiet? Is there plenty of space between the tables? Do we know if the staff is flexible? Is there more than one way out in case of a melt down or in case one or more of the kids needs to take a break and get some fresh air?” So as you can imagine, we don’t go out that much, and when we do, it’s usually to our local McDonald’s, where many of the people already know us.

Anyway, as I said, I read this piece about a week ago, and it kept popping up on my Facebook account. Friends messaged me about it, or posted it to my wall, or shared it on their own walls. Clearly, it moved a lot of people. And one of the best reactions to this story I have read comes from a man in Canada who has a son with autism. His name is Stuart Duncan, and he writes a blog called “Autism from a Father’s Point of View.” Check it out, and see what you think.

What a Difference a Day Makes

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IMGP3797So the past couple of weeks have been pretty rough. By my count, I spent six hours in IEP-related meetings at two of the kids’ schools. And two of those meetings were both tense and emotionally draining.

Not to mention, those six hours required at least twelve hours of preparatory meetings with psychologists and IEP coaches. And part of those twelve hours consisted of conflicting, or at least confusing, input from the various parties.

Oh, and those preparatory meetings either required or resulted in about another twelve hours of preparation and homework so that we could get our information and our strategies straight.

That makes thirty hours right there.

Then there was my nightly routine of going over my two oldest kids’ school binders and homework assignments and making sure they did the work they had forgotten to do—a routine that is not without its conflicts and occasional melt downs.

Then there were the increasingly dramatic tantrums that our seven-year-old began having right around the dinner hour—often starting a domino effect with a few of the other kids.

Then our four-year-old’s ADHD, perseveration, and stimming suddenly began shooting up like a Roman candle.

And finally, there was the fall-out of all of this in my job. Lots of time off for meetings, melt down management, and homework duty translated to a string of late nights just so I could keep up with the deadlines.

A Sudden Escape.

All these factors combined to produce a pretty dark cloud over my head. Everything seemed bleak. There seemed to be no end to the challenges. And I couldn’t see any sign of progress. All I could see was a long, difficult road ahead, and I was getting tired of trudging down it.

So I was pretty demoralized by the time last Tuesday rolled around and I remembered an engagement I had the next day. It was an autism symposium at the University of North Florida. I had been to previous meetings like this and found them very helpful, and this year seemed really promising. The topic was genetics—something that I have a vested interest in!

But I just couldn’t face the idea of going. “If I hear the word autism one more time,” I told Katie that night, “I’ll explode.”

So what did I do? I got up Wednesday morning, helped Katie get the kids going, and drove my two oldest to school—the regular routine. Only instead of heading for the symposium or going into the office, I got onto I-95 South and headed for Orlando.

I escaped for the day to Disney World.

Me Time.

Actually, this has become a regular habit of mine. As a Florida resident, I am able to take advantage of discounted park tickets, so it turns out not to be too extravagant an expense.

What do I do there? I don’t always go into one of the theme parks. Sometimes I wander the grounds of one of the resort hotels that are part of the property. I ride the monorail. I walk around one of the lakes. I sit on a swing or lie on a hammock. I take my camera and shoot pictures. Or I explore some area in one of the theme parks that I hadn’t visited in a while. One time, I splurged a bit and got a haircut at one of the high-end resorts. (Decadent, right?)

But what do I do? I pray. I think. I unwind. Disney is very good at creating immersive environments, so it’s easy to lose yourself and enjoy the scenery. And that experience of being somewhere else, even if it is mostly make-believe, helps me reset my brain.

I did a bit of everything that day. I walked around a couple of resorts and ended up in Epcot, where I strolled around the World Showcase. As the day progressed, I noticed a few things.

First, my pace grew more relaxed and my breathing became deeper and more even. Even my face felt more relaxed, and it became easier to smile. My shoulders lost their hunch, and my often fisted hands opened up. I hadn’t realized how tense I had become, and how I had been holding that tension in my body so much.

Then, I noticed that my thoughts were slowing down. With broad vistas stretching out in front of me as I walked around the lake in the Coronado Springs resort, I began to let go of the confining, cramping concerns that had been overshadowing my mind. The tyranny of the urgent receded, and I found myself taking a longer, more hopeful perspective.

To Dream Again.

All the things that had to get done, all the issues that remained unresolved, all the glitches that my children need to work through—they were all brought down a peg or two. The kids came into sharper focus, with all their fun quirkiness and golden hearts, and the autism receded. It was still there, mind you. (It never leaves.) But it was dethroned.

The other thing that receded was fear. I didn’t even known I had been under its shadow, but I had. Actually, it was more like a low-level panic over all the what-ifs for the kids’ futures. So many things could go wrong. So many forces could overtake our family and make our life together a ton worse. All these ominous possibilities were making me feel claustrophobic, helpless, trapped.

But getting away for a day of relaxation and prayer raised me above the fear. Being in a place that was built on dreams helped me remember my own dreams for my family and for each of my kids. I knew that some of them might not come to pass. But by letting fear entrap me in some kind of tunnel vision, I began to believe that none of them would ever come true.

I forgot that all the work we are doing with our kids is geared toward the goal of giving these dreams a chance. I forgot about all the progress that we’ve made the past few years—progress that will build a better foundation for these dreams. And worst of all, I forgot that my kids have their own dreams. I had become so focused on addressing their challenges that I forgot about their gifts—the gifts God had given them, the gifts that they are to our family, and the gifts that they will be to the world as they grow and develop and find their footing.

No Difference?

When I came home that night, not much had changed. Our seven-year-old hadn’t miraculously overcome his melt downs. Our twelve-year-old hadn’t stopped fixating on the new toy she wanted. Our four-year-old was still so hyper that he couldn’t stay in his bed . . . even though it was past 9:00 at night and he had woken up at 5:00 that morning. And so on and so on.

No, not much had changed at all. But I had changed. And that was all that needed to happen.

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!

Come, Lonely One

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As the season of Lent begins, I thought I’d go link to a post on the website for the Jesuit magazine America. On their Scripture blog, Fr. Terrance Klein, a professor at Bonaventure University wrote:

The grace of insight often seems to accompany great sorrow, the sort we suffer alone, because no other can fully feel our pain. . . . The 11th century Byzantine Christian monk, Symeon the New Theologian, viewed suffering in deeply personal terms: the loneliness of suffering was a form of intimacy with God. In his prayer to the Holy Spirit, he wrote, “Come Lonely One, to him who is alone.” . . . When suffering cannot be avoided, the Christian should do more than accept it with resignation. However long and arduous the effort to do so, we should receive suffering as a call to intimacy with the Man of Sorrows.

I like this reflection, because the image that Klein paints—an image of suffering as a call to intimacy with God—helps me make some sense out of the difficulties that my kids on the autism spectrum are facing and will likely face in the future.

At the risk of sounding maudlin, I know that my kids are going to encounter more challenges, more setbacks, and, to put it bluntly, more suffering in this world than their neurotypical peers. It’s just the way things are. They will never quite fit in; they will likely have fewer friends. Some of them may never marry or have children. They will be more alone than most of their peers. The world is unfair, and in some ways my kids got the short end of the stick.

But it’s not just the social aloneness they will face. There’s also the aloneness that comes from knowing that you’re different. You feel that difference deep down. But if you have an autism spectrum disorder, you may not know how to process it. You sense that people don’t “get” you. You’re not even sure that you “get” yourself. Even though you sense that it’s not true, you still can’t help feeling “less” than the people around you, and that causes an inner isolation that can get right down to the core of who you are

Accepting the Invitation.

According to Fr. Klein, you have two options when it comes to responding to this kind of aloneness. You can shrug your shoulders and accept it with a sad resignation. Or you can receive it as an invitation from God. My goal as a parent is to help my kids accept the invitation. I want to assure them that no matter how different they may feel, no matter how harshly they are judged, no matter how little they think they fit in, there is a deeper truth at work in their lives, a much more hopeful truth than the false truths they feel tempted to accept.

Here are some of the dimensions of this truth.

• There is a mystery to their autism—a mystery that involves an invitation to a deeper relationship with God. In their aloneness, my kids have a great opportunity to identify with, and to discover more deeply, Jesus, who was the loneliest man in history. They have the chance to understand that Jesus was more different than anyone else who walked the earth, but he never let his difference isolate him. Instead, he continued to pour out his life for other people, hoping to bring them closer to God. All this means  that my kids have the opportunity to find their stories in Jesus’ story. As isolated as they may feel, they have a unique opportunity to become men and women for others, just as he did.

• I believe that if they grow up in an environment of faith, people who face more than the “fair share” of hardships end up more reflective. They are able to look at the world from a critical distance, and to see life with a deeper and more stable set of priorities. This makes them more apt to come in touch with the deeper regions of the heart, where God dwells, and to find there the strength and good humor they will need for their challenging lives.

• Drawing from the writings of St. Symeon, Klein talks about the “grace of insight” that comes to those who suffer. It’s a grace that can make sufferers into prophetic voices and prophetic witnesses. This tells me that simply by the witness of their lives well lived, my kids can testify to a greater purpose and power than what the average person expects. They can point people to the deeper and more meaningful dimensions of life. In short, their inwardness, their relationship with God, can make my kids into signs of God’s presence and love—if they choose to accept his invitation

Why Not Why?

In an earlier post, I said that asking why so many of my kids have this challenge was not nearly as important as asking how I could help them make the most of it. Well, this post from Fr. Klein warns me not to be so sure. Why isn’t always a bad question to ask—and it’s not always a question God hates to answer.

And that’s a good thing, because the question won’t go away. Some of my kids are beginning to ask this question, so I may as well try my best to find some answers to help guide them.

In the mean time, it’s encouraging to know that God is with my children in a special way. As Fr. Klein wrote, no other person can fully feel their pain. But Jesus can. And he is inviting them to discover his answers to their questions. I only pray that I will be up to the task of helping them find the answers—to accept the invitation that God has given them.

So why did this happen? Is it possible that God has something important for my kids to accomplish? That he has invited them to know him with a special intimacy, and to become his prophetic voices in this world? I can’t rule this out. Of course, I don’t pretend that my kids are superior or more spiritual by nature. I have daily evidence to the contrary! But maybe, just maybe, they have a special calling to manifest Christ’s presence in the world. Maybe God gave them this cross so that his strength can shine through their weakness and otherness. Maybe he wants to teach them peace and intimacy with him in the face of their isolation so that they can radiate that peace to the people around them. In the mean time, I will continue to pray that Jesus, the Lonely One, will come to them when they feel the most alone.

When Near-Failure Is an Option

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A couple of days ago, I wrote about an episode at my daughter’s school where she was given the short end of the stick when it came time to make up a test she had missed. I’ve thought about it some more, and I realize that this little episode exposes a more general weakness in the way schools deal with high-functioning kids on the autism spectrum.

Looks Are Deceiving.

Kids like my girl look “normal.” They don’t bang their heads against the wall—at least not usually in public. They have average or above-average verbal skills. They are bright and sweet and innocent. They try hard to fly under the radar so that they won’t attract attention. But coping mechanisms like these often hide serious learning glitches and emotional imbalance.

As far as the school is concerned, there’s no need to worry about these kids. Not unless their parents push hard to get their kids special-ed services. And then, the most they are willing to do is place kids like these in “inclusion” classrooms—standard classrooms that are staffed with a teacher and an aide who floats around the room helping kids who need it. But that’s about as far as they go. No different approach to teaching kids with different brains. No sense of what it is that the kid needs. Just an obligation to pound the information into his or her head so that he or she can spit it out when it comes time for standardized testing. If the kid still isn’t doing well, despite the inclusion class, it’s his or her problem, not the school’s.

Hoop after Hoop after Hoop.

You see, schools consider inclusion to be a great, magnanimous gift they are bestowing upon these kids. So parents are made to feel greedy if they dare ask for anything else, like access to a guidance counselor or extra help in a challenging subject. Even if their child clearly needs it.

This begins very early on in the process. You have to jump through all kinds of hoops just to get an IEP for your child in the first place. In most cases, you literally have to wait for a child to fail before a school will do anything. As long as a student—no matter how smart—is pulling at least a D average in core classes, there is no need to do anything. He or she is “meeting standards.”

Never mind how hard it is for that kid to complete homework after working so hard to keep it together at school. Never mind how anxious, fearful, or even depressed that kid is becoming because of the stressful environment. Never mind that this kid is really, really bright and could tear the place up if given the chance. Nope. He has to fail first. And by the time that happens, so much ground has been lost—educationally, socially, and emotionally—that it’s a long, hard climb to get back on top of things.

“Are You Serious?”

And then come the humiliating meetings parents have with school administrators as they try to advocate for their children. There are the not-too-subtle insinuations that if you were a better parent, your child wouldn’t be failing. “All you have to do is use more charts and folders to keep her organized.” “Are you giving him consequences when he doesn’t do his homework?” “Well, if you didn’t have so many kids. . .”

There’s the attempt to blame the student. “She doesn’t need support. She’s just lazy.” “He simply needs to apply himself more.” “If he’d just do his homework, we wouldn’t be having this conversation.”

There’s the attempt to discount or diminish the situation. “I see that you have a diagnosis from a psychologist. Well, private practitioners tend to exaggerate things to keep you coming back. They’re more interested in their bottom line than anything else.” “It’s just a phase. My kids went through a tough patch as well. I’m sure he’ll pull out of it.” “Are you sure your child has autism? She seems fine to me.”

And then there’s this classic line: “Some kids just aren’t cut out for school.”

As If. . .

These are all things we’ve been told in parent-teacher conferences and at IEP meetings. As if we aren’t trying to teach our kids discipline and responsibility. As if we just want to milk the system for everything we can get out of it. As if we enjoy having to explain our kids’ challenges over and over again. As if we were under the spell of some Svengali-like psychologist who is milking us for every dollar we have.

But the reality is that no parent wants to go through any of this. I can’t tell you how many times I have felt a pit in my stomach when preparing for an IEP meeting or a parent-teacher conference. It’s not the exhilaration that I’ll be getting something special for my precious little child. It’s the dread of having to rehearse, yet again, the symptoms and the challenges that my kid faces. It’s the sober realization that I am not only responsible for educating my children. I’m also responsible for educating their educators so that they can see the way ASD affects my kids—and the way their teaching methods help or hurt them.

What disturbs me the most is that my kids are smart. They’re talented. They’re perceptive and creative and curious in their own way. But their teachers can’t see it because they’re hidebound by a one-size-fits-all approach to education. Their main goal is to get the kids ready for state-mandated standardized testing. So as long as they can get the right data into their kids’ brains—as long as their kids can regurgitate that data on a test—they have discharged their duties. And so any child whose brain is wired differently is left to flounder.

Just so long as he doesn’t fail, all is well. After all, isn’t that what inclusion classes are for? To keep on teaching him the same way—no matter how bad the results have been all along?