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.

Of Trailblazers and Human Pokémon

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So here we are at Halloween, the second most expensive holiday of the year. Actually, our family has been living this holiday for nearly three months, as our kids usually begin planning for it just as back-to-school shopping begins. One in particular plans for a particular costume, then obsesses over whether it’s the right one, then scraps those plans and comes up with a new one, then obsesses over that one again, until . . . well, you get the picture. It’s not uncommon for people with ASD to get stuck on one thing for days and weeks at a time. It’s a form of perseveration that can lead to anxiety and depression, so we try hard to help the kids keep it to a minimum—with varying degrees of success.

A Quirky Constitutional.

But that’s not the story I want to tell today. I want to tell you about a little walk that one of our daughters took the other day. That’s her in the picture above. She decided to go trick-or-treating as a human version of the Pokémon Spritzi. But as a sort of practice run, and just because she wanted to, she told us that she wanted to walk around the neighborhood this Saturday in her get-up. That’s right, up and down the sidewalks with a mask, umbrella, dressy shoes, and pink dress. In broad daylight. On a regular autumn day. Oh, and she also wanted us to take her downtown so she could walk around Baker Park in full regalia.

Her request confronted us with a question that I suspect many ASD parents face. On the one hand, in defiance of a neurotypical one-size-fits-all world, we encourage our kids to be themselves. There’s no need for them to try to force themselves to be “normal” as general society defines normal. There’s also no need to add to their anxiety or sense of otherness by implying (unintentionally) that they have to hide who they really are.

But on the other hand, we know how odd a human Pokémon can appear to most of our neighbors. We don’t want our kids to be labeled as “weird” or, worse, bullied by neighborhood kids. This daughter, in particular, had some tough experiences in eighth grade, and the memories of it still haunt her two years later.

Quite the Quandary.

So that was our quandary: do you protect your kid? Or do you affirm his or her uniqueness and creativity? Do you do your part in helping to change society’s perceptions? Or do you give your kid a lesson on what the real world is like and on how to fit in without compromising themselves? It’s a perpetual balancing act, with no right or wrong answer.

In the end, we didn’t have to give any answer—mercifully. She slipped out on her own in the middle of the afternoon, while I was out running errands and Katie was upstairs cleaning. She had a nice little constitutional around a couple of blocks with hardly a peep from anyone. Just one person on our street made a comment, and even that was mild and jovial.

Still, I’d like to think that whatever choice we made, it would have been made in love and with the best of intentions.

Trailblazers by Default.

It’s hard sometimes knowing which side to come down on—with this and many other issues. There’s no manual for parenting, and that’s doubly true for ASD parenting. In the neurotypical world, you have the experience and example of the many people who have gone before you or who are walking along the path with you. But ASD parents often find themselves walking by themselves, and on a different path.

I think this is especially true for our generation. Ours is the age of Temple Grandin, Steve Silberman, and Parenthood. Ours is the generation of disability advocacy, the ADA, and IDEA. It’s only in the past decade or so that ASD has become better diagnosed and recognized. So in many ways, we are the trailblazers.

It’s not just in our neighborhoods that we’re blazing trails. Through our advocacy for our kids, we are teaching school administrators and teachers about autism. We are helping our churches learn how to be more welcoming and openhearted. We are making parks and playgrounds more accessible. And we’re doing it not just for our kids, but for the others around us—and even more important, for the next generation.

So keep this in mind, all you special needs parents. Your work is having a far greater effect than you know. Just by walking down the street or into a McDonald’s with your kids, you’re making a huge difference. A trip to the library or a walk in the park means a lot more than exercise for your kids. Every contentious IEP meeting adds another brick in the road toward full inclusion and acceptance. You probably don’t even know that you’re doing it, but you’re blazing a trail just by embracing the family God has given you. You’re paving a way to make a brighter future for everyone—even the human Pokémon among us.

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).

 

 

The Last Bottle

“Do you mind checking the dosage on this one? I think I put too many in the boy’s cup this morning, so I told him to take only one. I think we need to put the extra one back in the bottle”

So said my wife when I came down for breakfast, as she handed me a medicine cup.

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This is how we dole out the kids’ medication. Each kid gets his or her own cup with the proper medicines at the proper dosages. Normally, this is my job every morning and evening—a job that involves taking every pill bottle out of our “apothecary box,” reading each bottle to verify who gets what and how many of each, and placing the appropriate medicines in each kid’s cup. It also involves getting out the Gatorade for the one kid who can’t handle the taste of his medicine with water, and getting out the milk for the other kid who can’t handle Gatorade or water. In the morning it also involves bringing two of the boys their medicine in bed so that it can begin working in them before they join the rest of us. Depending on how awake I am, this can take between five and ten minutes.

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Well, this morning I was late coming downstairs, so Katie took over the job. Only our doctor had just changed the dosage on one of the prescriptions, and she couldn’t remember what it had changed to. Hence the extra pill.

So I sat down at the table and began my usual ritual of sorting through the apothecary box to find the right bottle so I could put the extra pill away. A few minutes later, this is what the kitchen table looked like. (For those of you not patient enough—or not anal enough—to count, that’s eighteen bottles there.)

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Why eighteen? Because, in keeping with the laws of the universe, it was the last bottle in the box. It’s always the last bottle in the box. Just once, I’d like it to be the first bottle. Or the fifth. Or the eleventh. Hell, I’d be happy if it was the seventeenth. But no, it’s always the eighteenth. <sigh>

 

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.