Thanks, Mom

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There she is. Mom.

This picture was taken back in 1996, during one of my visits to her and Dad’s home in Sarasota, Florida. I have another picture of her from two years later that means a lot more to me. But I’m reluctant to share it because it contains our entire wedding party, and I try not to post pictures of people without their permission.

Anyhow, the story I want to tell has to do with my wedding to Katie in 1998 and the role Mom played in making it special—as well as the role she continues to play, even though she has long passed on.

A Special Wedding Gift.

Two months prior to our wedding, Mom was pretty sick. The leukemia she had lived with for years was beginning its final march on her system. We weren’t sure she would make it to the wedding. We even began looking into moving the wedding to Sarasota so she could be with us. Continue reading

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.

A Field Guide for Holiday Visitors

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Well, here we are again, on the verge of another holiday season. Warm feelings abound this time of year, and everyone feels the urge to form unusually large gatherings and consume massive portions of food and drink. There’s something about the earlier sunset and the growing chill in the air that puts people in a nostalgic, romantic mood. Either that, or thinking about the cold and darkness of death makes them want to huddle together for protection. Whatever the reason, there will be family gatherings galore over the next month or so.

And then there are the ASD families. If you know anything about autism, you know that people on the spectrum can have a hard time with sensory overload. Noises and crowds can make them shut down or act out. Or both. Changes in routine are unsettling. The different smells, tastes, and textures of a holiday meal can be overwhelming. Even when they’re surrounded by people they know and love, they’re still surrounded. And that doesn’t feel good.

All of this got me thinking about how different our family can be—and how different we may appear to people who come to visit. Mind you, most of our relatives and friends are familiar with our dynamic, but there are a few outliers. Not to mention, new friends may end up dropping by. So, with no malice or prejudgment intended, I decided to revisit and revise the guidelines I had written a couple of years ago for holiday visitors to our home.

A Field Guide to the Zanchettin Holiday Home.

  • Please remember that the Hallmark Channel makes its money by shamelessly peddling its special form of mendacity. No one’s dining room looks like that, and certainly not ours. We’re too busy running to therapy sessions and prepping for IEP meetings to dust every other day. Or every other month. Or ever.
  • No, the dining room chairs do belong in the living room. In front of the computers. Which get tons of use. Which is why the chairs are battered and stained. And why some have the stuffing pulled out of them. Nervous, stimmy, perseverative kids tend to do that sort of thing.
  • If you find yourself trapped in a heavily one-sided conversation with one of the kids, remember that nonverbal clues don’t work. Use your words. Find some hook to change the subject. Unless, of course, you enjoy lengthy discourses about the relative merits of water type Pokémon versus grass types in the Kanto Region.
  • Please try not to make any references to any popular music. Or Rap music. Or Disney movie soundtracks. For some reason, all my kids have convinced themselves that they love metal music. Because their oldest brother blasts it into his ears to help him deal with the noise and chaos of his high school hallways.
  • Sorry, no Turkey Bowl in this family. A few of them watch Notre Dame football, but for the most part, these kids would fit the (stereo)typical definition of nerds or geeks. So instead of football, how about a rousing game of Super Mario? Or two hours binge watching the latest YouTube video game walk-throughs from Chuggaa Conroy?
  • Yeah, he spins around like that sometimes. Or hops. Or planks. He’ll be fine.
  • Don’t be offended if one or more of the kids disappears without notice. It isn’t you; it’s her. She’s probably looking for a quiet place to unwind. Just shrug your shoulders and move on to another child. We’ve got six of them, so there should be plenty to go around.
  • Don’t be surprised if, when you ask one of the kids what he does besides school, he replies, “Therapy.” He’s being honest.
  • Yes, he often sits upside down like that, with his head near the floor and his feet in the air. Or athwart both arms of the chair. Or draped over the back of the sofa. And yes, he’s very comfortable doing it.
  • Yes, I know he’s taking a bath right before dinner. That’s his safe place when things get too noisy. He’ll be out in about an hour.
  • Pardon me while I dole out the kids’ medicines. I have to take care of dinner and bedtime, so it’ll take a little bit longer than my morning routine. I’ll be back in about 10 minutes.
  • All compliments about our parenting will be graciously accepted by the management. All advice will be graciously ignored.
  • Why yes, I’d love another glass of wine. How did you know?

Special Needs, Special Skills

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You know, when I tell people about our family’s unique make-up, I often get variations on one familiar response. It’s usually a combination of incredulity and well-intentioned pity. “Six kids? And they’re all on the autism spectrum? Wow, that must be so hard!”

Sure it’s hard. And challenging. Even daunting at times. But not to worry. We’ve got this. Why? Because special-needs parents have a very particular set of skills. They are skills we have developed over time as we have learned how to assimilate to our new normal, articulate the facts about our kids’ diagnoses, and advocate for them far and wide.

What are these skills? They are too many to count, actually. But the list below contains some of the more important ones. Take a look at them, and then ask yourself whether incredulity and pity are the best responses.

  1. Legal expertise. We know how to read a Federal law—and how to spot our family in it. It takes a special kind of person to know the ins and outs of Public Law 108-446, 118 Stat. 2647. It’s the kind of person who can point to this law with the kind of pride that many graduates point to their yearbooks. “See that? That’s us they’re talking about.”
  2. Close, personal relationships with members of the medical community. And the counseling community. And the law enforcement community. And all the local pharmacists.
  3. Elite status in our kids’ schools. Lunchroom moms and classroom volunteers? Rank amateurs. We have the principal on speed dial. Hell, some of us are on a first-name basis with school board members.
  4. No-Mess vision. It’s like x-ray vision, only way cooler. Cluttered countertops and overloaded kitchen sinks disappear before our very eyes. Piles of unwashed laundry melt away. Furniture damaged in melt downs or picked to shreds by anxious, OCD fingers blend into the walls and (beat-up) carpet.
  5. Membership in exclusive online communities. Other people call them support groups, but what do they know? We call them by their true names: Tribe. Extended Family. Confidantes. Council Elders. Best Friends.
  6. Premier access to upper-level insurance representatives. We know how to jump over the call-center drones half a world away and get right to the decision makers. We know the secret words that will get us there. We have their access codes in the form of multi-digit extension numbers.
  7. An unwavering commitment to date day. It’s more than just keeping the “romantic spark” in our marriage. It’s a matter flat out survival. But never at night. That’s the witching hour. It’s Saturday lunches for us. Or Sunday afternoon excursions to the grocery store together. It’s also the occasional getaway courtesy of a generous family member. Whatever it takes to keep us sane.
  8. Super intelligence. Words like methylphenidate, comorbidity, and neurodiversity roll off our tongues. We can spot the difference between OCD, ODD, and ADD at a hundred yards. We know what FAPE is and how to get it—and no, it’s not a contagious disease. We know how to take control of IEP meetings and how to explain complex neurological disorders to curious laymen and benighted teachers alike.
  9. Unbreakable strides. We don’t let little things like setbacks, discrimination, added diagnoses, or institutional ignorance slow us down. We know how to keep moving forward despite whatever obstacles or opposition we might face. We started our march with the first diagnosis, and nothing is going to stop us from doing everything we can for our kids.
  10. Wide open eyes. Where others might see stubbornness, we see a kid struggling with sensory overload. Where others see defiance, we see a perseverative loop. We have learned to perceive love in the quirky, the ordinary, and the bizarre. We can see joy in chaos and sadness in violence.
  11. Thick, thick skin. I’m talking rhino-hide thick. Judgmental stares bounce off us. Hurtful words shatter on impact. We laugh at denials of service, and scoff at the word No. How did our skin get so tough, you ask? From the salt of all the tears we shed early in our journey.
  12. Soft, soft hearts. We melt when we see a fellow traveler at the park or in the store—a young man flapping his hands or a small girl tapping on every window she passes. When we spot parents out with their special-needs kids, we smile broadly and have to resist the urge to run over and give them bear hugs. Our eyes mist up when our ten-year-old learns how to ride a bike or our first-grader gives us a hug. We have learned to receive love in unorthodox ways and unexpected circumstances. And we have learned how to give love in ways we never thought were possible. We excuse the inexcusable, embrace the inexplicable, and cherish the (seemingly) trivial.

So there they are: twelve key skills of a special-needs parent. As you can tell, we don’t want pity. We’re doing quite well without it, thank you very much.

However, if you wanted to give us cash, we wouldn’t object.

The Pyx in My Pocket

 

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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

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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).