A Brief, Fantastical Respite

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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.

What a Difference a Day Makes

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.