Tag Archives: special needs parenting

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.

It’s All About Us

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I’m so proud of my oldest daughter. All by herself, without telling us, she produced this video for a project in her Aspergers-only school. She doesn’t often tell us what she’s thinking—not uncommon for any 13-year-old girl and even more prevalent with girls on the spectrum—so I was blown away when I saw this.

An Inspired Diptych

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Pieta

So here we are in the middle of another Holy Week—the seven days between Palm Sunday and Easter. This is the time when Christians pay especially close attention to the stories of Jesus’ arrest, crucifixion, and resurrection. And as you might expect, believers conjure up beloved images during this time—images drawn from the Stations of the Cross or from a classic movie like The Ten Commandments or Jesus of Nazareth.

My favorite image, however, is a little different. I tend to think about Jesus’ mother, Mary, and especially that moment after the crucifixion that has been called the Pietà. See that picture up there? It’s Michelangelo’s rendering of the scene, and it’s on display in St. Peter’s Basilican in the Vatican. 

Anyway, the Pietà wasn’t always my go-to Holy Week image—at least not until something happened about four years ago. And since it’s Holy Week, I thought I’d share the story.

It had been a long evening—and it was only 6:30. Our second child had been fighting Katie over homework, fighting her older brother over the use of the TV, and fighting me over whether she was going to eat her dinner or just sit at the table and wail.

She was nine years old at the time: a very pretty girl with big, ice-blue eyes; light brown hair with natural blonde highligts; and a fair face with a few freckles. When she’s not throwing a tantrum, she has a lively sense of humor and an innocent, even sweet disposition.

She also has Asperger Syndrome. Among other things, this means that her brain has a difficult time processing all the visual and auditory input that we neurotypical people take for granted. So after a full day dealing with the sights and sounds of school, she has had just about as much as she can handle. She spends six hours every day holding it all in, and it’s only when she gets home that she feels safe enough to let it out. And that’s precisely what happened this evening.

So there I was, taking my daughter from the dinner table and escorting her to her room—again. “Maybe if I sit with her for a few moments,” I thought, “she’ll be able to calm down.” So up the stairs we went, me tugging her as she reluctantly followed, crying and swatting at me. I sat down on her bed, held her in my lap, and tried to speak in soothing tones while she shook and wept. But it was no use. She just kept pitching back and forth, wailing and screaming until she fell asleep in my arms.

Recognition and Revelation.

I was lucky that night: she fell asleep quickly enough for me to make it to the prayer meeting I had been attending. It took place in the chapel of a large Catholic church. The chapel was dedicated to Mary, and it featured a series of stained-glass windows depicting various scenes from the Virgin’s life.

I got there a few minutes early, tied up in knots and on the brink of tears. Since only a few people had arrived, I found a quiet corner and knelt down for some private prayer.

As I bowed my head and shut my eyes tight, a host of anxious thoughts swirled in my mind. What was going to happen to my little girl? Would we ever find the right therapies and medications? How could Katie and I keep up? What about our five other children, all of whom are also on the autism spectrum?

But then I looked up, I saw that I had stationed myself right next to the stained-glass window depicting the Pietà. I saw Mary, a look of both resignation and surrender on her face as she cradled the lifeless body of her son, the image pierced my heart. I had just come from cradling the seemingly lifeless body of my child, and here was Mary doing the same thing.

It was a moment of recognition and revelation. My reaction to my girl’s suffering was tinged with bitterness, but so was Mary’s. Looking at her face, I could tell that she didn’t just shrug off what had happened with a sense of holy indifference. She was a real mother holding her own flesh and blood. As I kept looking at the image, I imagined Mary telling me, “It hurts, doesn’t it? It really hurts. I don’t have comforting words to offer you, except to say that I know how bitter it is—because I’ve tasted it. Does that help?”

An Inspired Diptych.

In that moment, I felt a sense of kinship with Mary that I still have a hard time putting into words. The best I could come up with was a diptych, a kind of two-paneled painting. On one panel, I imagined myself holding one of my children, much the way that Mary holds Jesus in the Pietà. As I contemplate this panel, I realize that, just like Mary, I too am sharing in my children’s pain and frustration and anguish. When melt downs like my little girl’s happen, I am just as helpless as Mary was, and the best I can do is keep vigil with them and pray for God’s strength to keep moving forward.

On the other panel, I see myself as the lifeless body, spent and exhausted, lying in Mary’s lap. I have given all I have to give, I have done all that I know how to do, and there’s nothing left. But Mary is there, accepting my pain, sadness, and helplessness as her own and ennobling it by turning it into a prayer that we offer to God together.

I realized that night that this is an okay place to be. If Mary is with me, I know I’ll find some kind of resurrection, some kind of divine grace to help me get up and take the next step. I saw that it’s okay to collapse upon occasion; someone will always be with me until I can rise again.

Rising to the Challenge.

What I learned—what I felt—as I looked at that stained glass window has stayed with me. My little girl is not so little any more. Her melt downs may not be as dramatic, but her challenges have become more complex. So too have our other kids’ challenges, melt downs, and rough patches. Frankly, a day doesn’t go by that I don’t get the chance to identify with one or another—or both—of those pictures on my diptych. And that’s a good thing. Because I don’t know what I’d do without them.

I hope you have a happy Easter.

Not So Fast!

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2014 seemed like it was going to be a good year. Our two oldest were enrolled in a private school dedicated to kids on the high-functioning end of the autism spectrum, and they were actually enjoying it. We were, too. Who wouldn’t? There is very little homework, and the teachers are both knowledgeable about ASD and approachable.

Our next two oldest kids were making good strides in the public school, including a very responsive IEP team for our fourth child. And the two youngest were skating along beautifully, showing the world just how much they could learn.

We had taken a relatively incident-free overnight trip to Disney World in January, and in February we took a longer trip to visit my father in Tampa—again, with no real problem. During that trip, we took a side visit to Sarasota that blew me away. The primary purpose was to visit my mother’s grave, but we turned it into an all-day thing, throwing in a lunch at a restaurant downtown. That entailed walking through a crowded arts fair. But again, with no incident. What’s more, at the restaurant, two people told us how beautiful our family was and how well-behaved our children were. I couldn’t have been more proud!

Things were going so well, in fact, that I caught myself wondering whether I was making a mountain out of a molehill with all this autism stuff. Was I just being too dramatic? Was I letting my fears color the way I looked at my kids? Maybe I was turning my anxieties into self-fulfilling prophecies.

Oh, Well . . .

That was a few weeks ago. Since then, we’ve had to deal with . . .

• A huge melt down from one of our private-school kids over a Doctor Seuss celebration the school had been planning. This trivial event brought back embarrassing memories from a similar one seven years prior. “I can’t go to school,” she wailed. “Don’t you remember how I had a migraine in kindergarten during Doctor Seuss Day, and I threw up? I don’t want that to happen again!” It took two hours of helping her work through it before we could get her to school. Ant that was just the beginning. For the entire week afterward, she became so anxious that she began throwing up every day.

• Completely irrational anxiety from our oldest about his upcoming confirmation—all because of a cognitive glitch that left him petrified of our local bishop. Seriously, the guy’s a kindly Cuban gentleman who lives next to the cathedral in St. Augustine. But my boy was convinced that the bishop was going to interrogate him in front of the whole congregation and condemn him to hell for his sins!

• Increasingly angry, sometimes violent, outbursts from our eight-year-old every evening. Once he’s surrounded by the whole family at the dinner table, he becomes jumpy and irritable. Too much stimulus that he can’t control. Too many voices talking. Too many flavors and textures on his plate.

• Our ten-year-old whiz kid fighting tooth and nail instead of doing the bang-up job he was capable of on his STEM project. The melt downs bordered on the epic because Minecraft had to win out.

• Our six-year-old girl collapsing into an emotional heap every time we corrected her for the slightest mishap.

• Our five-year-old boy suddenly becoming unable to sit still for love or money. Unless he’s playing Fruit Ninja on my iPad or watching YouTube videos of Angry Birds on the computer.

No Laurel-Resting.

So yeah, it’s been a trying couple of weeks that left me wondering what the hell happened. Everything was going so well, and then all of a sudden it wasn’t.

All this has shown me something, and I hope I don’t forget it.

Good days come, and you get a break every now and then. Maybe even a longish one lasting a couple of months. But God help you if you ever let down your guard. If you don’t keep working with your kids, if you don’t take advantage of every opportunity to move them forward another step or two, you risk losing more ground than you thought you had gained.

I knew it, but I relearned it: ASD is permanent. It’s also a tricky S.O.B. Just when you think you’ve got it figured out, just when you think your kids have it licked, it comes out of left field and says, “Not so fast, Cowboy!” This is especially true when your kids are high-functioning. They get good at masking what’s going on inside them, until they can’t take anymore. And if you’re not careful, you play along with them.

The Trap of Wishcraft.

It also showed me the power of the imagination. In a sense, I was in denial because there were no immediate crises to deal with. Things were relatively smooth, and I let wishful thinking take over. Rather than pay attention to the signs that some of the kids were beginning to unhinge, I slacked off and enjoyed the rest. And yes, there were signs. Katie saw them and tried to alert me to them. But I didn’t want to look. Instead, I conjured a fantasyland in my mind and tried to make the outside world conform to it.

I don’t think I’m the only parent who does this, by the way. Everyone takes a mental vacation every now and then. But in the case of special-needs parents, the stakes are usually much higher.

So we slid down the mountain a bit. It happens. But that’s okay. I’m back on the watch tower now.