The Struggle Is Real

 

fullsizeoutput_41c4

Remember my story about my girl having a couple of seizures last summer? Remember my story about how hard it was for her to go to Mass during the summer? Well, the saga continues to unfold. Continue reading

A Brief, Fantastical Respite

thomas-covenant-1

When I was in high school, I was really into science fiction and fantasy literature. I guess I still am, but I don’t usually get the time to immerse myself in a good novel these days.

Anyway, there was this one fantasy series I read in high school called The Chronicles of Thomas Covenant. The author, Stephen R. Donaldson, imagined the books to be a kind of dark inversion of Tolkien’s classic The Lord of the Rings.

Each book in the series opens with the (anti)hero Thomas Covenant experiencing some kind of crisis that mars him physically just before he is transported to a realm known as The Land. While in The Land, Covenant is quickly healed of his wounds and ends up reluctantly accepting a perilous quest. Lots of action, tension, magic and romance ensue—often quite gripping.

Then, as Covenant to the climax of his quest, something happens to him. He is caught in a battle, perhaps, or a curse is uttered against him. Whatever it is, it leaves him with wounds exactly like the ones he had just before he entered the Land. It’s at this critical juncture that he finds himself back in our world in the exact same condition he was at the start: haggard, numb, bloodied, and exhausted.

A Magical Christmas.

Well, that’s what I felt like the week after Christmas. We had had a rough few days leading up to the holiday, and I was feeling pretty beat up. Nothing seemed to be going right. A few of the kids’ anxieties had gone through the roof, issues at school mushroomed, and a few tight deadlines at work led to late nights at the computer.

But something strange happened on Christmas Day, and it lasted a few days afterward. There were no melt downs. No tantrums. No OCD or anxiety or disrupted sleep. It was absolutely delightful! My own anxiety diminished. I was sleeping better. We even took most of the kids to my brother-in-law’s for a Christmas gathering, and I had a blast because it was completely uneventful. I was sailing along, enjoying life in ways I had forgotten about in the previous weeks.

So far, so good. But then by December 30, things began sliding downhill again. First one kid went south. Then another. And another. Slowly over the next three days, we re-entered our “normal” zone with the melt downs, the perseveration, the communication glitches, the anxiety—the whole nine yards. Even work issues flared up again!

By lunchtime on New Years Day, I was back to my usual self: weary, furtively looking back and forth to see who was going to erupt next, steeling myself for the inevitable, even feeling that familiar lump in my throat after helping one of the kids through a tough time.

So Sunday had come, and I was ready to start back at work as if nothing magical had happened at all. Just like Thomas Covenant.

Go Easy.

Now, before you go feeling sorry for me—or telling me to suck it up, Buttercup—let me say this: I suspect that many parents of special-needs kids can relate to this cycle. On one level, every parent appreciates the fun times, the easy times, the magical times. But there’s a poignancy when it happens for special-needs parents because for those few short days, they know what the rest of the parenting world feels like on an average day. They get a glimpse of the “normal” that most parents experience most of the time, and it feels good. But then they return to their own special “normal,” and they have to put on their big-boy pants again.

I’m not going to sugarcoat it. It’s hard. It’s draining. It’s isolating. It takes so much more time and energy and stamina to stay on top of your kids’ needs and challenges. Sometimes you can want to curl up in a corner and not come out for a few days.

But we can’t.

Let me make one other thing clear: Katie and I know that it’s not the kids’ fault. We don’t resent them for who they are or for their needs. Much, in fact, of what can weigh on us is watching our kids go all this turmoil. We wonder what their future will look like. We worry if they will be able to live on their own after we’re gone. We ache for them to be rid of their painful challenges. And we feel helpless.

So when you see a special-needs parent looking unusually rested and refreshed, know that a lot is going on underneath the surface. Know that sooner or later they’re going to go through a Thomas Covenant-like transformation. So go easy on them. Maybe even offer to help them when the need arises.

When Darkness Isn’t Really Dark


I have a very creative kid. Well, more than one, actually. But the one I’m talking about right now is a sneaky kind of creative. As in, he stays quiet, under the radar, and then out of nowhere, he surprises you with something that blows your mind. Like this picture. He showed it to Katie last week in a very nonchalant way, as if it wasn’t a big deal. In fact, he had drawn it a few weeks back, but never thought to show it to anyone. Clearly, his still waters run very deep.

When Katie first showed me the picture, I was more worried than proud. It’s such a grim, depressing subject, and the title was alarming . “Is this what he thinks about his life?” I wondered. “Does he really feel trapped inside his anxiety?” But Katie saw it differently. She was super impressed with his artistic talent–the shading, the level of detail, the combination of hard, rectangular bricks and the softer, rounded glow of the light. “I knew he was good at building things like Legos,” she said. “I just never knew he was good at illustrations as well.”

That helped. Frankly, I don’t know why I was so surprised. We know he has anxiety issues. We know he is keenly aware of his aspie differences, and that he tends to isolate himself because of them. Why wouldn’t he try and find some outlet? Besides, there are far worse things he could do, like keep it bottled up inside until he implodes. Still, I was cautious. 

So I asked him about it, and he confirmed that this is how he often feels. He was so matter-of-fact about it, too. As if he were a clinician describing a diagnosis to a group of interns. No sadness. No desperation. No obviously personal investment at all. Just the objective, rational, clear facts. I made sure he knew to talk to one of us, or at least his counselor, if he ever felt really bad, and his answer was classic: “Of course I know that. I’m not stupid.” Again, objective, unemotional, calm, cool, and collected. 

“I’m Not Suffering.”

Now, if you’re an autism parent, or if you are autistic yourself, you’re probably chuckling a bit. You’re familiar with “professor syndrome.” If you’re a parent, you’re also likely familiar with the tendency toward catastrophizing every new insight into your kid. You know you shouldn’t, but you can’t help yourself. It’s a gut reaction. 

At any rate, I asked him if I could share the picture and the story behind it. He agreed–too quickly, I thought. So I pressed him a bit, explaining what that might mean. “I may have to give some background, including that you suffer from anxiety and depression.”

“Don’t put it like that,” he said.

“Why?”

“Because I don’t suffer from it.”

“What do you mean? You’ve told me yourself how depression can make you stay in your room all day and keep you from getting together with friends.”

“Yeah, but that’s not suffering. That’s coping.”

“Okay, so what’s suffering?”

“Well, I haven’t killed myself, have I?”

I was so surprised by this that the only thing I could do was laugh. I could tell he was completely serious, but the answer was so extreme and yet seemed so obvious to him that it was comical. 

The best part? He didn’t get offended by my laughter. He just flashed me a sheepish smile and laughed a bit himself. 

This kid’s going to be all right.

The Pyx in My Pocket

 

Pyx

Remember my post a few weeks ago about my daughter’s difficulty with getting out of the house because of her fear and anxiety? Well, something cool happened today.

Sunday mornings can be rough for my girl. She hates going to Mass now, because she’s petrified that she’ll have a seizure—and in such a formal, public place. So I’ve been letting her stay home, along with one of her brothers to keep an eye on her (no argument from the boys, of course). To make up for it, I’ve been bringing Communion to her and her brother every Sunday after Mass. I carry the consecrated Hosts back in a little pyx like the one in the picture, and we sit go sit on the back deck together. We read one of the Scripture passages from Mass, talk about it for a few minutes, pray the Lord’s prayer, and then I give them Communion. Short, sweet, to the point.

“I Don’t Want It.”

Today was different, though. She woke up deeply rattled by two separate nightmares. She had promised me that she would come to Mass today, but the nightmares did her in. There was no way she would leave the house, and there was no way I was going to push her.

So off I went to Mass with everyone else, carrying my trusty pyx in my pocket. In the Communion line, I presented my pyx to Fr. Keith and asked for Hosts for my two errant kids. I’m all too familiar with the drill, and so is he. So far, so good.

But when we got home, I discovered that my girl was too upset even to receive Communion. She was in our bedroom, curled up on the bed, her brow furrowed in fear. Her voice quavered as she begged me not to force her not to come downstairs for our weekly Communion service. “I’m just not stable now,” she said. “I don’t know what’s wrong with me; my nightmares are getting worse, and I don’t want to leave your room.”

“There’s nothing wrong with praying and asking God for his help,” I said. “Who knows? Maybe you’ll feel better afterward.”

“I don’t know why, but I just can’t!”

She was nearly in tears, so I put my arm around her, and offered up a silent prayer. This was worse than I had seen in a long time, and I was at a complete loss. All I could do was hug my girl, with a “loaded” pyx in my pocket.

Ninety Short Seconds.

Then it dawned on me. Maybe the Sunday morning ritual we had established was just too intense for her today. The mere act of going downstairs, getting the Bible, and sitting on the deck was just too much for her to handle. It seemed so easy to me, but not to her. If she just stayed inert in our bedroom, she thought, nothing would change. She wouldn’t have to face her fears. She would stay safe in the little sanctuary she had built for herself.

So rather than coax her out into my world, I tried to enter hers. “I have an idea,” I said. “How about we sit right here on the bed, and I just give you Communion? We don’t have to read the Gospel. We don’t have to do anything special. Just a quick Our Father, and then you receive. Can you do that?”

“I think so,” she said.

It took all of 90 seconds, and we were done. And you know what? It made a huge difference. The anxiety faded. Her smile (a slight one, at least) returned. Her hunched shoulders relaxed, and she breathed a little easier.

The change was so dramatic that I was actually able to convince her to come on a couple of errands with me. Of course, I bribed her with the promise of lunch from McDonald’s, but her willingness to join me was still a marked contrast to how she had been just minutes before.

A Mini-Miracle.

Now, I can interpret this episode in a number of ways. Maybe my persistence paid off. Maybe the memory of her nightmares had faded. Maybe I had chosen just the right words, and delivered them in just the right tone of voice. Maybe the good feeling she got from doing what Dad wanted softened her up.

Or maybe, just maybe, God actually worked in my little girl’s heart and calmed her fears.

This answer makes the most sense from a faith standpoint, but it also makes the most logical sense. The desperate scenario I described above was not going to change. My girl was far too anxious. The only variable that changed in the equation was the impromptu Communion service. She eased up only after she received the Eucharist—which we Catholics believe is the actual presence of Christ.

I know this sounds odd. I know it sounds like I’m trying to justify my faith. But I don’t care. As long as mini-miracles like this keep happening, I’m going to keep believing. As long as I find help and answers in prayer, I’m going to keep giving God the credit. As long as my kids can point to evidence of Jesus’ presence and his work in their lives, I’m going to go with it.

That’s why I’m keeping my pyx in my pocket.

His First Sleepover

So here it is, 10:30 at night, and I’m sitting on the floor of my 10-year-old son’s bedroom. I do this every night when he goes to bed. It’s become our little routine. He comes into my room, tells me that he’s worried about something. He says that he needs me to sit with him “just one more night,” and I happily oblige. I sit on the bed with him, and we talk for a few minutes about his day. I pray over him, kiss him on the cheek, and tell him I love him. Then I sit down on the floor next to his bed (usually with my iPad) and wait for him to go to sleep.
 
But tonight is different. This time, his good friend Joseph is spending the night with him. They have spent the past three hours editing a video they’ve been making, laughing and whooping it up the whole time. They were having such a good time that I assumed all would be well. But when bed time came, my boy came into my room again, as usual, and started talking to me.
 
“Dad, I don’t feel very comfortable,” he said, wringing his hands and giving me a sidelong look.
 
“What’s wrong, Squirt?”
 
“This is my first sleepover, and I’m not used to having someone other than my family in our house. Joseph is my best friend and all, but it feels so weird. I don’t know what to do.” His voice was quivering.
 
I held him for a while, and we talked. I told him that it’s no different than if Joseph were to go home after spending time visiting. My boy would just go to bed as usual, only Joseph would be in a sleeping bag on the floor next to him. Nothing strange or wrong or bad would happen. They’d just go to sleep, and in the morning he’d wake up to find his best friend there, ready for some more fun.
 
But no amount of logic would help him. He needed me to be with him. He needed me to assure him that everything would be all right. He needed the comfort of the routine—especially in this situation, when someone who isn’t normally here is, well, here.
 
So here I am, sitting in my boy’s bedroom while he and his friend try to go to sleep. Joseph seems to be nodding off just fine, but every time I look up at my boy, I see that he is squinting his eyes, staring at the ceiling, or looking at me forlornly. Normally, he’s asleep in five minutes. But not tonight. He just can’t settle down. He keeps tossing and turning. Things aren’t the way they’re supposed to be, and that’s upsetting.
 
This may be a long night.

Shaken, Not Deterred

IMG_0119

See that picture? That’s my wife and my daughter (15) taking a walk. Oh, and our dog, Roxie. Do you know why I’m posting this picture? Not because I love these two (which, of course, I do), but because of how proud I am of my little girl. The fact that she is out on a walk shows how courageous she is.

You see, about four weeks ago, my daughter had a seizure. It was her first. Not a little tremor—a grand mal. You know, the kind where you’ve fallen to the floor convulsing, with your eyes wide open but seeing nothing. The kind where you can’t remember anything about it. The kind where you wake up as the paramedics are gently placing you on a stretcher and wheeling you into an ambulance. Terrifying stuff.

Then, ten days later, she had another one. The first one was in our house, but this one was out in public, at a food court. Again, it was a grand mal, and it lasted longer than the first one. Fortunately, I was there with her, so I knew to roll her onto her side, cradle her head, and wait it out. Again, she woke up, disoriented, to emergency personnel hovering around her.

So what does this have to do with the picture up there? Everything.

Overcoming “What If.”

Events like these would be traumatic for any adolescent girl; they can be positively paralyzing for a girl with ASD and anxiety disorder. The randomness of the seizures, the lack of memory, the waking up surrounded by strangers—it’s all so upsetting. The largest question that looms in her mind now is “What if?” What if I have another one? What if Mom and Dad aren’t around? What if it happens in front of my friends?

She’s on anticonvulsants now, and she hasn’t had a seizure in two weeks, but that doesn’t matter. The anxiety is so big, and the autistic tendency to perseverate is so strong, that the mere possibility of another event has kept her pretty much homebound ever since. She even missed an appointment with her counselor, whom she really likes.

Now do you see why this picture is so precious to me? Katie and I have convinced her that she needs to start getting out. We’re starting slowly, having her join us as we walk the dog in the mornings. And she’s doing it! She’s walking, she’s talking about everyday stuff, and she’s not perseverating over the seizures.

(The walking stick? That’s because she has mild scoliosis, and it helps her posture.)

Different Drums.

Now take a look at this picture.IMG_0120 Do you see that plush doll in the crook of her right arm? That’s Phantump, one of her favorite Pokémon characters. She is rarely separated from this creature, and when she is, she’s holding another one of the more than 100 she has collected over the years. They are her security blanket. They bring her comfort. They help her bridge the gap between the fantasy world she so enjoys and the real world, which is fraught with challenges and dangers.

So there’s my daughter, out in public with a walking stick and a plush Pokémon. While most girls her age are swooning over boys, preparing for their learner’s permit, and paying close attention to their appearance, here is my girl, walking to the beat of her own drum. She’s fighting her fears. She’s facing down her anxieties. She’s pushing through some things no fifteen-year-old should have to face. And she’s still standing.

There was a time when I’d object to the plush doll. “You’re a young woman now. For God’s sake, leave that thing behind!” There was a time when I’d try to force her to push through her fears more quickly than she was ready to do—usually to disastrous results. There was a time when I knew pretty much what I wanted her (and all my kids) to be, without paying too close attention to her unique personality. But if walking this autism path with my kids has taught me anything, it’s to throw away all of my expectations and to not care about how other people look at them. Those concerns were more about me than the kids, anyway.

So march on, girl! I don’t care if you need to take five Pokémon with you. I don’t care if you choose one of the most ornate, obvious, obnoxious walking sticks possible. Do whatever you need to do. Just keep moving forward. Today, it’s a walk with Mom, Dad, and Roxie. Next Sunday, it may be joining the whole family at Mass. Or maybe just part of Mass. Or maybe not yet. It doesn’t matter. Take it one step at a time, and we’ll be right there with you.

* These pictures, and this story, have been posted with the kind permission of my daughter (and, of course, my beautiful wife, Katie).

 

 

Dreaming of Heaven

Simpsons Heaven

Check out this article that appears on the website of America magazine. It’s lengthy and theological, but the author, Candida Moss, makes an excellent point. She talks about how disability is viewed in the Bible, and how a misunderstanding of the Christian tradition, by overemphasizing God’s healing power, can unwittingly place people with disability on the margins.

According to Moss, many of the healing stories in the Bible can be used to “reinforce the understanding that disability is a deviation from the way God intends us to live.” In other words, disability automatically equals defect. In some cases, it also means sin—or even demonic possession. So a person with a disability is in need of a cure, someone who needs to be made different than who he or she is before gaining entry into heaven.

As a counterbalance to this interpretation, Moss asks, “Can we find ourselves as ourselves in heaven? Can the view that God loves the disabled as they are be biblically sustained?” For answers, she turns to the story of the Doubting Thomas. After the resurrection, Jesus appeared to Thomas not as a completely restored person, but as one still bearing the marks of his crucifixion: “Jesus’ wounds are an integral part of his identity. It is by his wounds that he is recognized.” So “If God incarnate is known by his glorified impairments, why would we not hope for the same?”

No Cure Needed.

As I’ve written before, I have long had a strong gut reaction against the thought that you can pray the autism away. Autism is woven so finely into my kids’ identities that to take it away would be to unravel an essential part of who they are. I find it hard to believe that, in order to be made worthy of heaven, they would have to be unmade as autistic individuals. I find it hard to believe that all the things they have learned and become precisely because of their autism has little significance or value.

My kids have spent their entire lives as autistic individuals. To a large degree, autism has made them who they are. Their “otherness” has dramatically shaped the way they live, love, and function in the world. What’s more, they have taught numerous people (most especially Katie and me) valuable lessons about what it means to be human, to love, and to be loved. I would hate to think all of that has to be left behind once they enter heaven’s gates. Who would they even be then?

What Do I Want?

So what would it mean for my kids to find themselves as themselves in heaven? Here are a few things I would want to see.

  • I want them to be able to appreciate the world for the beautiful work of creation that it is. I want them to enjoy the sights and sounds and smells, the tastes and textures, of everything around them. And that means I want them to feel free to flap their hands, jump up and down, or react however they want to the beauty that will surround them.
  • I want them to be able to enjoy a quiet walk in the woods and not get scared by the rustlings of a busy forest. I want them to revel in the feel of sand between their toes and delight in the sound of the crashing waves—not run in terror of them.
  • I want them to feel free to share their unique, quirky insights without being mocked or marginalized. Heck, I want them to be free to share, period, and not be so anxious about communication that they can’t put a complete sentence together.
  • I want them to no longer feel the need to lash out or clam up or hurt themselves when they get overwhelmed. Or better yet, I want them not to ever have to feel overwhelmed again.
  • I want them to enjoy a world that accepts and treasures them for who they are. A world that doesn’t judge or sideline them because they are different. I want them to be in an environment where they don’t have to feel constrained or threatened by unnecessary expectations. A world where they can lose their anxiety over fitting in.

I’d Change the World for You.

Now, you’ll notice that some of these bullet points focus on my kids’ own healing and others focus on the world around them. And that is as it should be. For many of the challenges that my kids face come not from themselves or their unique neurologies. They come from a world tainted by sin and in need of renewal. They come because of the “structures of sin” that promote intolerance, ignorance, prejudice, and small-mindedness.

There’s a popular meme in the autistic community that says “I would not change you for the world, but I would change the world for you.” As a parent with two eyes, I know there are things in my kids that need to change—just as there are in me. But I also know that the world they are living in can be cold, cruel, and inhospitable to people who are different. And that’s the biggest change I’m anticipating.

So yes, I want to see my kids healed, and I believe they will be—of the selfishness and fear and pride that infects all of God’s people. But I don’t want them healed of their autism. I want them to remain the same loveable, quirky, autistic people that they are right now.

After all, that’s how God made them.