Practically Perfect in Every Way

Here’s a story about an autism-friendly staging of Broadway’s Mary Poppins. Anyone who knows me knows that I’m a huge fan of all things Disney (with the possible exception of their ‘tween stuff. Miley Cyrus? Really?). So it came as no surprise that the Disney company would cooperate so fully with the folks at the Theatre Development Fund. When they learned that TDF had bought out the house for the Sunday matinee, they were more than happy to make adaptations to the show so that audience members with autism would have as positive an experience as possible: No strobe lights? Check. Quiet down the sound of the tap-dancing? You got it. Give ample warning before loud noises or big surprises? No problem. The entire cast and crew added extra hours of rehearsal so they could get this one showing just right. I can’t tell you how good this makes me feel, even though we live 965 miles from the New Amsterdam Theatre.

Reading this piece reminded me of the “fun” we had when our oldest was a baby. The pastor of our church would often tell a joke or have a dry, witty remark at the opening of Mass–something to engage the congregation and loosen them up a bit. The problem was, our son was very sensitive to sudden noises, especially outbursts of laughter or applause. (He still is.) So every time the congregation would laugh or clap, he would let out a blood-curdling scream and  begin to cry as if in pain. Katie or I would have to take him out into the lobby until he calmed down. Then we’d bring him back in, just in time for the homily–which often involved audience participation. And then there were the announcements at the end, with the occasional shout-out to some super-involved parishioner or committee–followed by applause. So if all three events happened at the same Mass, our son ended up spending most of the time in the lobby, with Katie and me alternating as his chaperone.

All that was back when we had no clue that he was on the autism spectrum. Heck, we didn’t even know there was a spectrum! We thought he was just sensitive. (He was.) We thought he was just high strung. (He was.) We thought he’d grow out of it eventually. (He hasn’t–at least not completely.) We never thought it was because his brain was wired differently. We never saw it as a warning sign of other challenges and developmental delays down the road. It took many more years before we put the pieces together.

But now we know. Now we get why he reacted that way at Mass. We also get why it took him five days of a six-day beach vacation to muster the courage to crawl off the beach towel and onto the gritty sand. We get why he spent a whole spring and summer afraid to walk on the pointy grass blades of our front lawn. We get why the geckoes that loved to dash around our front porch in St. Augustine filled him with terror and kept him from going outside unless one of us carried him. All these sensory assaults were just too much.

So now we know. And that knowledge, while unsettling in some ways, is comforting in other ways. We have a label. We have an explanation. And that means we can learn how to help him. It means, also, that he doesn’t have to go through life afraid of all the things that used to startle him so deeply. Because he can name his challenges, he has a greater degree of control over them. He can learn how to adapt.

Now twelve years old, our son knows who he is, and that knowledge has a good side and a not-so-good side. On the not-so-good side, he is having to deal with a sense of otherness about himself. He knows that he’s got more challenges than most of his peers, and it can get him down. This is not uncommon for folks on the spectrum–the incidence of depression is much higher among them than in the general population.

But on the good side, he has developed a real compassion for other kids on the spectrum, especially those who are more profoundly affected than he is. He actively seeks them out at school and tries to befriend them. He is even looking into the possibility of volunteering as an after-school aid to work with these kids. He can also be very tender-hearted toward his brothers, who are more autistic than he is.

I’m proud of the way my boy has accepted his diagnosis. We’ve still got some work to do in the self-worth department, and there are still social and academic challenges he must overcome. But I love the way he’s looking outside of himself and trying to help other kids. Who knows? He may end up as a counselor or mentor. He may end up  bringing masterpieces like Mary Poppins to kids who aren’t fortunate enough to live in New York City. He may even end up developing entirely new autism-friendly experiences for the next generation–something that’s practically perfect in every way.

A Gleam of Hope in Education

Great news! According to an article in the Washington Post this weekend, Representative Jim Moran (D-Va.) introduced a bill in Congress that would establish a program to train teachers who work with children on the autism spectrum.

It makes sense, given the rise in prevalence, that general education teachers learn about the ins and outs of ASD and the various ways it can affect a student’s learning.

What I like about the bill is that not only is training required but it looks like parents themselves will have some say in the programs that are developed on the local level. It won’t be just education experts.

Now the challenge will be making sure that kids on the spectrum are identified as such. You see, the bill states that the programs are intended for school districts where at least ten percent of the special-education population are children identified as having an autism spectrum disorder. But we have seen how reluctant schools are to make this designation. Even when we bring in diagnoses from private psychologists—diagnoses confirmed by a psychiatrist and a treating pediatrician with experience in ASD—the district demands that it perform its own evaluation by a school psychologist. And the school psychologist always seems to approach evaluations from a highly skeptical perspective.

Still, this bill is a good step forward. We have had enough teachers who have refused to consider ASD as part of the reason for one or another of our children’s academic challenges. Instead, they have chosen either to browbeat our kids for their lack of focus or to dismiss them as having below average intelligence—despite reports to the contrary from private evaluations. If these teachers simply understood the ins and outs of this disorder, they would adjust not only their attitudes but their teaching methods as well.

You can be sure I’m going to be following this bill as it makes its way through Congress. I also intend to let our own representative know about it and encourage his endorsement. Now, if only I knew what percentage of Saint Johns County special-ed kids are identified as ASD. I guess that’s my next step. Wish me luck!

Anatomy of a Melt Down

So we went out to dinner last night. Nothing fancy, just a local sub shop. And by “we,” I mean me and five of the six kids—Katie had taken our oldest to soccer practice. We’ve been doing this since soccer season started a few weeks ago. I figured the weekly outings would give everyone good practice for those more rare times when we all go out to a “real” place for dinner.

Generally, the kids have been doing pretty well in these outings. They’ve become more aware of their environment and are learning a greater degree of empathy for each other—something ASD folks are not too good at. But today was another story. We tried a different place than usual, and that change of routine in itself could be enough to put kids on edge. But there was more. The place had two TVs on the same channel—very loud. So there was the added sensory stimulation. Even worse, the TVs were showing some kind of wrestling competition—only for some reason, it was a match between a man and a woman. And one final ingredient: our twelve-year-old daughter was having an anxiety-filled day due to an upcoming exam.

So what happens when you put an anxious aspie girl in a new, loud environment filled with images that she finds objectionable? A combination of broad comedy and high drama. Here’s what happened.

The Attack of the Legal Beagle.

My girl is on a never-ending quest to control her environment, especially when it’s unfamiliar to her. She figures that if she can shape it, she won’t have to deal with the sensory assaults that come from the unpredictable. So, assailed by the new place and the sound of the TVs, she began to feel threatened and overwhelmed. She couldn’t control the TV, so she decided to control her brothers, both of whom were fascinated by a socially-sanctioned, live-action version of one of their favorite video games.

“Daaad! Tell these sons of yours to stop watching the TV! They know you don’t approve!” Then, scowling and pointing an accusing finger to the boys, she went on. “Turn your eyes away right now!”

“It’s okay,” I said, as calmly as possible. “The match is over now; all they’re doing is interviewing the wrestlers.” I rubbed her back and tried to keep her eyes fixed on mine. “Don’t worry; I’ve got this one. Just try to eat and don’t let the boys get to you.” So I got her to relax. A bit. And then. . .

“Daaad!” she cried, looking at our seven-year-old. “Why is he eating cheese? You know he’s lactose intolerant. Put that sub down right now!”

“It’s okay. Some cheeses are okay for him, and we made sure he’s got the right stuff.”

Brief pause. Then her gaze fixed on her five-year-old sister.

“Don’t sit like that! You’ll fall out of your chair!” I intervene.

Then she turns to our nine-year-old son.

“Ae you drinking Mountain Dew? Don’t you know it has caffeine in it?”

I jump in again. “It’s okay. It’s Sierra Mist, and that doesn’t have caffeine.”

After dinner, we head out to the van. Seeing our three-year-old toddling along on his own, she shouts out to him, “Get out of the road! You’re gonna get killed!” He was only two feet away from the van, clearly safe.

“I have to sit in the front seat! You know I get car sick!”

The Real Girl.

I should set the record straight: She was having an off day. She is usually a sweet, good-natured girl who enjoys helping her family. The past few Mondays, when we went out for subs, I knew I could rely on her to keep the younger ones peaceful while I got their drinks or took one of the boys to the bathroom. I knew I could ask her to take her sister to the bathroom and expect no incidents. (Granted, I knew she’d fight for the front seat, but that’s SOP by now.)

But last night was just too much. All you had to do was look a little more closely, and you’d see that behind the defiant, vigilant facade was an anxious, almost terrified little girl. Her body was hunched over, her back and shoulders forming a protective shell around her. Her brow was furrowed, with her eyes shifting from left to right. She just couldn’t process all the visual and auditory noise—not with the anxiety about her impending exam and the mental exhaustion that such anxieties brought about. And so she melted down. Loudly and publicly, with next to no awareness of the effect her actions had on everyone around her.

This could have happened to any one of our  ASD kids. Not necessarily the “Legal Beagle.” That’s her schtick more than the others. But each of the kids has his or her own triggers. Each manifests his or her social/environmental anxiety in a different way. It just happened to be her turn today. I’m just grateful no one else decided to blow a gasket!

Adventures in Aspergian Living.

This is a snapshot of what life with Aspergers can be like. Heightened sensitivity to external stimuli, combined with an inability to process this stimuli, can make a person very anxious. But lacking the social intuition that most of us have, aspies don’t know how to communicate their anxiety, let alone defuse it. So they remain trapped in their angst, until the pressure builds, and it finds an outlet.

In these situations, the wisest approach is to calm the person down, assure him that it’s not as bad as it seems, and help him learn that he is not at the mercy of his environment. Alas, the gut reaction is to correct the outburst and to reprimand the rhetoric. But that only heightens the anxiety and worsens the melt down, causing a downward spiral.

It has taken me a couple of years to learn this. Mind you, I don’t claim to have it down to a science, and sometimes I’m really surprised by the trigger that will set someone off. So there are still times when I feed the fire instead of put it out. But whether or not I get it right all the time, I do know what the deal is. And that knowledge is very comforting. If nothing else, it helps me to laugh at situations like these instead of get anxious or upset myself. It’s taught me not to care too much about how other people view us. I know we’re a quirky family, and in a way, I usually thrive on the never-a-dull-moment life we lead.

My Heroes.

Of course, none of this really excuses outbursts like last night’s. My daughter is going to have to learn how to manage her anxieties better. She’s going to have to learn the ins and outs of social interactions. She’s going to have to work harder than most of her peers. It’s part of the package. But at least Katie and I know what’s behind much of it, so we can help her. It is important that she understand the ways in which it isn’t her fault—and the ways in which it is. She’s going to have to learn the difference between an explanation and an excuse.

Yes, she’s got a lot of work ahead of her. So do the others. But they’re learning the ropes. They’re doing the work. They’re getting better at it, and they’re not complaining about it. For that reason alone, these kids are my heroes!

When You Were Younger. . .

In one of the lesser-known resurrection appearances narrated in the gospels, Jesus tells Peter: “When you were younger, you used to dress yourself and go where you wanted; but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” The passage goes on to explain: “He said this signifying by what kind of death he [Peter] would glorify God” (John 21:18-19).

This passage has always had special resonance for me, to the point of being a kind of interpretive key to signal events in my life. They sound kind of grim, don’t they? All this talk about being led where you don’t want to go, or about death—even if that death glorifies God. But they don’t have to be so foreboding. At least, they haven’t been for me. In fact, I’ve found a surprise or two along the way as these words have unfolded in my life.

One major surprise came when I realized who it was who would end up leading me in paths I did not expect: my own kids! Now I’m sure that many parents find this to be the case. None of us really knows what to expect when we hold our firstborn child. We can never fully appreciate how much our lives will change now that we have welcomed this new person into our lives. How much more when you are blessed with six children! And how much, much more when so many of these children end up having such a pervasive disorder as autism or Asperger syndrome!

Unexpected Paths.

I named an earlier post “A Little Child Shall Lead Them,” and I meant it as something more than a clever play on words. I can testify that my kids—all six of them—have led me in ways I never expected.

• They have led me to the waiting rooms of psychologists and psychiatrists and speech and occupational therapists as I have tried to figure out how to help them through their challenges.

• They have led me to school conference rooms as I have advocated for them and labored mightily to convince unimaginative, one-size-fits-all educators to give them a fair shake.

• They have led me to my knees in prayer—not desperate prayers for their healing so much as impassioned entreaties that God will grant them a future full of hope, a future where their gifts are welcomed and where they can make a difference for other people.

• They have led me down rocky paths filled with sleepless nights, full-scale tantrums, and hours-long battles over homework, housework, and relationship challenges.

Death and Freedom.

St. John tells us that Jesus spoke these words to Peter to indicate the kind of death that awaited him. I think that, to a small degree, I can relate to these words. No, I haven’t died! But my kids have definitely led me to a few deaths of sorts:

• The death of my dream for a Brady-Bunch kind of life. It was a pretty self-centered, self-indulgent dream anyway.

• The death of any rigidity or legalism I may have brought to my ideas of parenting.

• The death of a few relationships due to some people’s lack of willingness to “get” our family’s dynamic.

• The death of an overly romanticized take on the spiritual life. There are no simple answers. There are no guaranteed formulas. There is only Jesus’ unshakeable promise to be with us always.

What’s ironic—but wholly in line with Christian theology—is the degree of freedom each of these deaths has afforded me. Little by little, as my kids have led me, they have brought me to a place of surrender. Not defeat. Not resignation. But true acceptance. These are my kids. They are God’s exceedingly generous gift to me. They have taught me so much about myself, about the world, and especially about the Lord himself. And that leads to the final part of the passage from John.

An Unforeseen Glory.

John said that Jesus’ words were meant to point to the way Peter’s death would glorify God. Well, I’m not about to think that I give God all that much glory. Not unless, of course, he is glorified in huge messes. But I do think that the deaths that my kids have led me to have helped me see the Lord more clearly—to see his glory in new, unexpected ways.

• I see his light shining through my six-year-old’s unassailable innocence, both when he’s in full melt down mode and when he’s completely aflutter with the joy of something as simple as soccer practice.

• I see him laughing when my eleven-year-old says something wildly inappropriate but uncannily disarming at the dinner table.

• I see him shedding a tear when my twelve-year-old gets himself tangled up inside and needs to be talked down from his ledge of self-condemnation.

• I feel his arms around me every time I dive into yet another parent-teacher conference.

• I see his covenant commitment every time I see Katie coaching the kids in homework, making dinner, and trying to help my three-year-old overcome his loud, insistent perseverations all at the same time.

• Most especially, I see him in the Host at Mass as he says: “This is my body.” And I pray in return: “This too, Lord, is your body—this precious family you have given me. And here is my body, my life. It’s nowhere near the image of you that it’s supposed to be. Still, I offer myself to you. You have contrived so many ways to empty me. Now I need you to fill me so that I can give myself—body and blood, soul and humanity—back to my children.”

And the Lord, reaching out his hand to take me, responds: “Amen.”

Will You Join the Dance?

Will you, won’t you, will you, won’t you, will you join the dance?

So goes the refrain of Lewis Carroll’s “Lobster Quadrille,” from Alice in Wonderland.

I can’t tell you how often I ask myself this question.

Will you or won’t you join the dance? Will you join the bandwagon and wear a puzzle-piece lapel pin and light up your front porch blue every April to honor Autism Awareness Month? I’ve done both this year. I have also attended autism symposiums and information seminars. I’ve gone to our state capitol to lobby for funding for our local autism center. Last year, I had a lengthy phone conversation with one of Autism Speaks’ lead scientists. (Good news, guys: They do not to engage in embryonic stem cell research!) I’ve even initiated my Make Me Go Blue campaign to raise funds for autism research. Yes, I am willing to dye my hair blue for this cause!

So I clearly have joined the dance. When you get diagnoses like our kids have, you really have no choice. You know you need to increase awareness so that your kids can have as bright a future as possible. You know that awareness is key for understanding, and understanding is key for acceptance. And without acceptance, opportunities diminish. The more people get the ins and outs of ASD, the greater the chance that creative solutions will be found to the challenges that people on the spectrum face.

But there is another part of me that resists joining in the dance too vigorously. I may do a simple waltz or roundelay, but I will not do a flamenco for autism awareness. I will not join the autism Riverdance troupe.

A Whole Mess of Ugly.

Where do I draw the line? At my kids. I don’t want to turn them into poster children. I don’t want to garner pity for their situation, difficult though it is. I try to be careful about this because I don’t want them to see themselves only through the lens of ASD. I don’t want them to use their diagnoses as excuses for not trying hard enough or as a way to shift the blame when they get into trouble. So I try to separate out the advocacy stuff I do from the parenting work laid out before me.

My kids are going to have ASD for the rest of their lives. They will always find it harder than their neurotypical peers to navigate the rocky shoals of social interactions. Relationships will pose a huge challenge. They will have to learn how to cope with the pressure trying to appear “normal” even though they are so different. So the last thing I want to do is give them a way out. Life’s going to be hard for them, and the sooner they get to work figuring it out, the better off they’ll be.

My two oldest know that they’re on the spectrum, and we’ve had some very good conversations about what that means for them individually and in our family. But what I haven’t done yet is prepare them for the outside world’s reactions. They’re getting a bit of it at school, but the environment is still controlled to a large degree, and they both tend to be shy. But that’s not going to cut it when they’re out in the job market. Or thinking about starting their own family. Or when Katie and I are gone. They’re going to need a good foundation.

I keep thinking of Motormouth Maybelle in the musical Hairspray and her words of wisdom to a young mixed-race couple: “You’d better brace yourselves for a whole mess of ugly coming at you from a never-ending parade of stupid.” No matter how much we advocate for our kids, no matter how much awareness we raise, there will still be people who just don’t get it. We’re seeing that already in the kids’ schools—and not just from the general education teachers but even from some of those supposedly trained in special education! Just imagine what it will be like when they enter the broader world.

Two Dances.

Part of the challenge is that our kids are high-functioning. They are verbal. They know how to look people in the eyes—even though they don’t typically do it. They are intelligent and, thank God, well-mannered. But they still have ASD. They still find life difficult. Despite their high IQs, they have learning glitches. Alex Plank, founder of the autism website Wrong Planet, once said that with low-functioning people, it’s hard to see the person because of the autism. But with the high-functioning, it’s hard to see the autism because of the person. But it is in there. It affects every aspect of their lives. And it can weigh heavily on them. They’re just really good at hiding it—until they’re in the safe environment of home or the pressure gets to be too much.

And so, because they can seem so typical, the risk of them being misunderstood is greater. The risk of them not being given the consideration or accommodations they will need in the workplace is higher. And the risk of potential friends and life partners not “getting” them is greater.

So rather than join in the dance too vigorously and inadvertently give my kids excuses, I try to stay understated. For their sake. Not because I think it’s not serious. And certainly not because I don’t care. But because I need them to be as strong as possible.

So yes, I will join in the Autism Quadrille—but only because I want my kids to be able to join in the broader in far more beautiful Dance of Life.