What it takes

Jonah and I had a date for church this morning. We’ve gotten to the point where Gabriel goes a couple times a month. There’s only so much racing and chasing we can manage, and really, we’d rather he were outside running circles than making a mad dash for the altar.

J was a little more squirrelly than usual. We’ve been out of the church proper for almost three months, meeting in the social hall while repairs were made. He was very excited to be back in “the big church.” Usually we can get a solid five minutes of ease out of him upon our arrival, but today he was squatting atop the pew with Where’s Walrus wide open, rocking from side to side and talking a kind of bookish gibberish to himself. There’s always been a Gollum-esque quality to Jonah, minus the creepy “My preciousssss” obsessive chatter. It’s in the way he moves. He has a wonderful litheness about him—creaturely in a kooky but charming sort of way.

But what it takes somedays is full body contact. At one point he was on my lap, facing me and showering me with kisses. On my nose, my eyes, my neck. Then he had a piece of my hair in his mouth, then he was sniffing me. Every few moments he would look me straight in the eye and say, “I love you mom.” Either that or, “How long until Holy Communion? Five minutes? Twenty?”

One routine that must be particularly strange to watch involves me putting my hand down the front of his shirt so that I’m touching his skin while my other hand clamps down hard over his eyes. “Tighter, tighter!” he whisper-commands. It’s hard to know how hard to push. I fear shoving his beautiful big eyeballs into his skull, and my hand can stay clamped like that for only so long before it starts to cramp.

It must be a lot to take in. Of course it is. I remember my first visits to an Orthodox Church. I would plant myself in a pew behind a large pillar so that I could watch and hide all at once. As soon as the service was over I’d break for the door. There’s still a little of that tendency in me. The icons, the chanting, the incense, the bright stained glass. Priests and altar boys in robes moving about. The periodic Paschal shout of “Christ is Risen!” answered by a hundred voices shouting back, “Indeed He is Risen!” Of course he needs someone to clamp down hard on his eyes. Sometimes it’s just too much. Turning all of his attention on me seems to have the same calming effect. Sniffing my hair brings him down to a more familiar, less stimulating place.

On the spectrum of sensory input, Jonah’s a seeker (to the often extreme), so I can forget that even he can be overwhelmed. I’m starting to think it happens more than we know or have in the past discerned because he’s almost always smiling. He’s game and he’s goofy. His goofiness is probably the biggest sign that he’s got more than he knows what to do with. When he starts slapping his head three-stooges-style and falling to the ground, you know it’s time to bail. Get to some heavy work or a swing. Whatever it takes…which is how I tend to approach Church these days. I try to ignore the looks that come our way. Some are real, some imagined. I have to admit that there’s part of me saying, “Screw ’em.” (I know. Nice sentiment to be having in church.) But if there’s one thing Jonah’s given me, it’s perspective.

It’s so easy to judge. It’s so easy to be unkind and think you know best. Jonah has taught us how to be his parents. Through his cries and his caresses, through his climbing and running and spinning he shows us what he needs—which is sometimes to be left alone, but more often to be helped along. To be calmed down so he can be with us better. So we can be better with him.

Advertisements

Not even a duck

Jonah’s really into Super Why!. The characters all have alternate superhero-ish identities (“They’re secret agents mom!”), and the arc of each episode centers around solving a problem for a character in a fairy tale. I like the reading bit. I like the way Whyatt’s (the main character) computer always directs them to a book. But their storytelling isn’t always exactly accurate, which is fine if a child already knows the story. Not so fine if it’s being presented for the first time.

Take a kid like Jonah. Whatever rendition of a thing he first gets into his brain, there it is. There it sticks. There it stays. This applies across the board: movies, books, the rules of writing. One Super Why! episode revolves around the story of The Ugly Duckling. I suggested getting the book from the library. J was all for it. But as we read the book before bed, I watched and heard his wheels turning. I’m not sure what story the television show told, but it was markedly different than the original tale.

“You mean, he’s not even a duck?!” The look on J’s face was sheer astonishment. He couldn’t get over it. He saw the difference between the duck who wasn’t a duck and the baby ducks. He had to know what happened. Where’d the egg come from? Why did the duck who wasn’t a duck leave the pond, leave the farm? Who took care of him? Why did he get so big? Why did he change? How did he become the most beautiful of all?

“You mean, he’s not even a duck?!” He repeated this question ten times.

Of course, my initial reaction to his reaction wasn’t accurate. I couldn’t help but think/want to believe that he felt the duck who wasn’t a duck’s difference. That he thought it was extremely cool when the duck who wasn’t a duck discovered he was something different entirely—a swan. Not only a swan, but a swan with swan friends and a swan way. A swan with a place in the world. Something big and mysterious and beautiful.

And who knows what he takes in, what he’s processing or how. Where I saw a chance to talk about his autism, he simply saw a story that surprised him. He saw a mystery being solved (he’s also really into Scooby-Doo and the gang’s Mystery Machine). He didn’t apply this to himself, and I got the sense that now’s not the time to go there. We don’t hide J’s autism from him. We use the word; we don’t talk around it. But we’ve also not had a sit-down chat. I just don’t think he has a framework to process it.

But saying that, you can never know what he’s taking in, and I don’t want to make assumptions. On some level, he knows he’s different. John once asked him, with a touch of exasperation, “Why can’t you be normal?” Jonah’s response: “I’m not normal! I’m funny!” Maybe not even being a duck will be the image that helps him understand. For now, I’m just glad he’s got the story straight. Because it’s a good story, and I wouldn’t trade my duck who isn’t a duck for anything.

The hard thing to sort out is when, and how hard, to push him to learn and practice being a duck (insert the word neurotypical here). Because it’s a pretty ducky world out there, and he needs to know how it works, even if he doesn’t always understand why it works that way. Do you make the kid use lowercase letters when he prefers to write his name, “JoNaH”? (Even getting him to add “Estes” causes a kerfuffle.) His OT, dad and I all have slightly differing opinions. When a six-year-old impervious to cold tells you he doesn’t need a coat, do you let him deal with the consequences of a stiff north wind or stuff a hoodie in his backpack?

These are questions for another day. Questions every parent wrestles with, with every sort of child. Where’s that Mystery Machine when you need it?

© Sarah B. Smith

What it feels like

Here’s an interesting one:

Jonah, G and I took a hike after school yesterday. John’s presenting at a conference Michigan, and my motto, when he’s gone, is “Work ’em hard, Wear ’em out!” Doesn’t always work, but in the last two nights I’ve only been woken up twice, so I’ll stick with the game plan.

The trail we take is pretty simple. It runs in a series of loops—some larger, some smaller, with names like Coniferous and Deciduous—so you can gauge how far to go. I was surprised how much physical energy both the boys had, so we took the slightly longer Coniferous loop.

Jonah especially loves the woods. It’s the adventure, yes, but it’s the woods themselves. He and his babysitter, Tessa, would take tree-hugging walks around our neighborhood in Miss-our-i. He was probably two. Being an avid tree hugger myself (I mean this quite literally), people assumed I had coached J. Nope. He comes by it honestly. Trees calm him.

As we walked, Jonah narrated each place along the trail where something of consequence had happened on previous hikes, down to the identification of a very small hole (he’s currently a little obsessed with holes): “That’s the hole I tripped on last time and hurt my head!” J talks and talks. We have the best conversation. Not just about things that happened in his day, but about what’s going on inside of him. He will be talking and then stop and say, “Did you understand my words?” He wants me to know. He needs me to understand.

Pain, death, dying, and emergency situations are still some of J’s favorite topics. He fell off our backyard climber a few days ago. It’s about a four foot drop, but he landed on his hip and couldn’t shake it off like he usually does (we have to be careful assessing his injuries because his pain tolerance is so high). He was offering quite a monologue about the experience. But here’s the line that really got me:

“I really felt it in my brain.”

Which leads me to wonder about the connect, or maybe the disconnect, between what’s happening in his body and brain. It seems to take an incredibly intense experience (which would include intense pain) for his brain to fully register what’s going on in his body. That makes a whole lot of sense, especially when I see him sometimes searching almost desperately (in his Dr. Goofenshmirtz kind of way) for sensory input. The rolling, the head-slapping, the high swinging jump-and-land-with-a-thud thing he’s been doing of late. Even feeling that pain must do something for him. Does it make him feel more connected in his body? As a human being?

The tricky thing is, this intensity borders on a loss of control. Is it truly helpful for him? I don’t want to be constantly telling him to reign in his body. He needs ways to physically express himself, but as his pediatrician reiterated at his last check-up (granted, he was standing/hopping on top of the exam table before I could stop him—even a mom’s anticipatory skills aren’t always operating on the highest frequency): “Safe choices Jonah. We need to make safe choices.”

Self-awareness comes slow. But it is coming. His classroom aide wrote me a few days ago with a wonderful development:

I have to tell you I saw him recognize his body today. We were trying to finish his journal and I could tell he was ready to go exercise. However, out of the blue he said Mrs. Cynthia I need to sit back for a minute. He did just that……he took a few deep breaths and then scooted forward. 🙂 It was pretty exciting!

Jonah having the wherewithal to stop himself and breathe deserves celebration. There’ve been times I thought the day would never come. Well, he showed me.

Puppy Love

Our dogs have this endearing/slightly gross thing they do. Sophie sprawls on her side (on the wood floor if she’s hot, on the dog bed if she’s not) and Lucy commences to lick out her ear. Lucy is thorough. She will spend maybe ten minutes cleaning and licking, and it reminds me of the way monkeys pick bugs off of each other, or of a mother rubbing her child’s back in slow, soothing circles. The gross part is the sound when Lucy’s being particularly fervant: sllrrrrrrp, sllrrrrrrp, sllrrrrrrp.

The analogy carries to this funny little ritual Gabriel and Jonah have fallen into. Overcome by love of his brother, Gabriel will grab Jonah by the neck (it usually happens when they’re sitting next to each other at the table) and bring him down, as you will see in Figure 1.

Figure 1

Directly following, he will sometimes play with Jonah’s hair or pick at Jonah’s ear. When he’s doing the ear picking I’ve several times told G to stop, to which J responds, “No Mom! I Like it!” The initial takedown is often followed by a period of chillin’:

Figure 2

As you can see from the picture, G’s right hand is still in motion as he plays with J’s ear. Jonah would stay in this position for a very long time, but Gabriel has moved on to the manic love phase, in which he pulls Jonah’s head up and gives him a proper (if strangulatory) neck hug:

Figure 3

Look at Jonah’s face. This may be the mellowest I ever see him. He’s moved (or been brought) down from Tigger land and is firmly inhabiting Pooh (this is an analogy his PT and OT use to help him recognize his emotions and general body commotion). When I see a picture like this, I can’t help but fast forward a bit in the boys’ futures. Gabriel is the big brother in this picture. Despite being four years younger than J, he may always be.

The lovefest continues as Jonah lets Gabriel gnaw on his chewy necklace. [Note the abiding Pooh-like countenance, and also the striking resemblance to his father.]:

Figure 4

We are seeing that day they said would always come. It’s nearly here. We glimpse it through the kitchen window looking out to our backyard. Jonah and Gabriel are becoming friends. Send them outside, and the odds are good they’ll play, together. They regard each other with a surprising degree of respect, even admiration. It’s all a phase, I know, but some of it will stick. I’ve never had a brother, but I know a little bit about sisters, and in the echelons of human relationships, mine occupy a place unto themselves.

[As I prepare to hit the Publish button, all hell’s breaking loose in J’s room. Trouble at the window box. Better head…]

Emotional Intelligence

Honestly, I don’t know nearly enough about this topic, but I’m going to give it a stab all the same.

Emotional intelligence. According to a paper published in Psychological Inquiry (Vol. 15, No. 3, 2004), emotional intelligence is defined as:

the capacity to reason about emotions, and of emotions to enhance thinking. It includes the abilities to accurately perceive emotions, to access and generate emotions so as to assist thought, to understand emotions and emotional knowledge, and to reflectively regulate emotions so as to promote emotional and intellectual growth (Mayer & Salovey, 1997).

Persons with autism are said to lack a highly developed sense of emotional intelligence, especially in regard to social interaction and communication. Like everything related to autism, it’s a very wide spectrum. One of the reasons (besides simple denial) we were so hesitant to have Jonah evaluated for autism was his sometime-ability to empathize. Our picture of autism didn’t match J’s brand of autism.

He is also quite capable of perceiving emotions, though his range is somewhat limited. His common questions include: Are you happy? Are you mad? Are you irritated? Sad doesn’t enter the picture very often. I introduced “irritated” as a gradient of mad. Any kind of negative feelings cause J to passionately proclaim “I’m having a BAD day!” even if the rest of his day has been peachy. So that’s where his difficulty regulating emotion comes in, not unlike his difficulty modulating sensory experiences.

When it comes to generating emotions, well, you should watch the kid in front of a mirror. Or a video camera (especially Skype). Give him a little time and the right frame of mind, and you’ll see tears. Real tears, manufactured while you wait! He’ll contort his face, stick out his lower lip and work himself up into a bona fide tizzy.

What brought this all to mind was an incident a couple of nights ago. The boys were bathed and pajamaed, newly diapered and mouth clean. So I pull G up on my lap to read a final book before bed, and the little stinker had, in the five minutes since his father had dressed him, completely filled his pants. “Whew-ee!” I exclaimed. “Where’d that poop come from?” [It’s a little game G and I play. He almost always answers “Jo-Jo!”, followed by “Daddy!”]

Jonah and John overheard us, and John came out to tell me that Jonah had just informed him that it’s his [John’s] fault that Gabriel pooped. I can only infer, sheepishly, that Jonah has heard me (more than once) thoughtlessly blame John for things completely outside of his control. Yeah, it happens. But the connection Jonah made in that moment kind of astounded me. He was imitating my bad behavior. More than that, he had emotionally reasoned that if something goes wrong—if something is less than ideal—it’s Daddy’s fault. To say the least, I was humbled. Mortified is probably more accurate. I firmly resolved, in that moment and in many moments since, to wholeheartedly pursue unflappability. A little more tranquility and a lot less flusterability. I know, it’s not a word. But it should be.

Which leads me to consider: what’s workable? What’s not? Maybe for Jonah, the most important skill we can help him develop is the ability to recognize what he can get better at and what he can’t—and to seek accommodations (whether they be emotional, intellectual, or physical) for the areas that are, let’s face it, beyond his control.

The Beautiful Ones

es, it’s been a long time coming, but I promised a Beautiful Words list, and here it is. To see where this got started, read What Makes a Word Funny. With the exception of the first example (and maybe also imbroglio), it’s interesting how the sound of these words correspond to their meaning in terms of beauty. A kind of literary onomatopoeia—though many also have a sinister edge. I’ve included a short list at the end of J, J and G’s favorite words of the moment, such as they are. And for the record, I borrowed heavily from Douglas Harper’s Online Etymological Dictionary, lest you think I spent weeks researching.

1. eviscerate: to disembowel. c.1600 (figurative); 1620s (literal), from Latin evisceratus, from ex– “out” + viscera “internal organs.” Sometimes used in the 17c. in figurative sense of “to bring out the deepest secrets of.” I suppose the bringing out of deep secrets could have a certain beauty about it, depending on the context. 

2. lorelei: 1843, from German, name of a rock in the River Rhine near Koblenz, Germany. In legend, a lovely woman sat atop it and sang while combing her long blond hair, distracting sailors so their ships foundered on the rock and they drowned. The second element of the name probably is Rhenish dialect lei “cliff, rock;” the first element is perhaps from Middle High German lüren “to lie in wait.”

3. imbroglio: 1750, from Italian imbroglio, from imbrogliare “confuse, tangle,” from in- “into, in, on, upon” + brogliare “embroil,” probably from Middle French brouiller “confuse.”

4. lithe: Old English liðe “soft, mild, gentle, meek,” from Proto-Germanic linthja-, from Proto-Indo-European root lent– “flexible” (cf. Latin lentus “flexible, pliant, slow,” Sanskrit. lithi). In Middle English, used of the weather. Current sense of “easily flexible” is from c.1300. I love how it’s tied into weather. I’m imagining a 12th century weather report…”Untídgewidere dægþerlic. Wearm ond liðe.” [Translation: “Unseasonable weather today. Warm and lithe.” Okay, that’s actually Old English because I couldn’t find a Middle English translator.]

5. lilt: 1510s, “to lift up” (the voice), probably from late 14c. West Midlands dialect lulten “to sound an alarm,” of unknown origin. Possible relatives include Norwegian lilla “to sing” and Low German lul “pipe.” It is possible that the whole loose group is imitative. Sense of “sing in a light manner” is first recorded 1786.

6. ravel: 1580s, “to untangle, unwind,” also “to become tangled or confused,” from Dutch ravelen “to tangle, fray, unweave,” from rafel “frayed thread.” The seemingly contradictory senses of this word (ravel and unravel are both synonyms and antonyms) are reconciled by its roots in weaving and sewing: as threads become unwoven, they get tangled. I like the way this ties in to imbroglio, pun intended.

7. ratatouille: 877, from French, first element uncertain, second element evidently touiller “to stir up.”

8. quintessential: c.1600, from quintessence, early 15c., in ancient and medieval philosophy, “pure essence, substance of which the heavenly bodies are composed,” lit. “fifth essence,” from Middle French quinte essence (14c.), from Medieval Latin quinta essentia. Loan-translation of Greek pempte ousia, the “ether” added by Aristotle to the four known elements (water, earth, fire, air) and said to permeate all things. Its extraction was one of the chief goals of alchemy. Sense of “purest essence” (of a situation, character, etc.) is first recorded 1580s.

9. wherewithal: “means by which,” 1530s, from where [Old English hwær, hwar, from Proto-Germanic khwar, from Proto-Indo-European qwo– (see who) + withal [“in addition,” late 14c., from Middle English with alle (c.1200), superseding Old English mid ealle “wholly”]. Okay, if you’re still tracking, an alternate definition states, “the means needed for a particular purpose,” which encompasses the where and the whole and the who. Kind of great.

10. nuance: 1781, from French nuance “slight difference, shade of color,” from nuer “to shade,” from nue “cloud,” from Gallo-Romance nuba, from Latin nubes “cloud;” related to obnubere “to veil,” from Proto-Indo-European sneudh– “fog” (cf. Avestan snaoda “clouds,” Welsh nudd “fog,” Greek nython, in Hesychius “dark, dusky”). Nuance is one of those words that demonstrates how something as tangible as weather can root meaning.

11. translucent: 1590s, from Latin translucentem, present participle of translucere “to shine through,” from trans– “through” + lucere “to shine.”

12. turtle: 1) reptile, c.1600, “marine tortoise,” from French tortue “turtle, tortoise,” of unknown origin. The English word is perhaps a sailors’ mauling of the French one; 2) “turtledove,” Old English turtle, dissimilation of Latin turtur “turtledove,” a reduplicated form imitative of the bird’s call. Graceful, harmonious and affectionate to its mate, hence a term of endearment in Middle English. I want to revive this one.

13. ephemeral: 1560s; Originally of diseases and lifespans; extended sense of “transitory” is from 1630s. From ephemera, late 14c., originally a medical term, from Medieval Latin ephemera (febris) “(fever) lasting a day,” from Greek ephemeros “lasting only one day, short-lived.” Sense extended 17c. to short-lived insects and flowers; general sense of “thing of transitory existence” is first attested 1751. Compare to Greek ephemeroi “men,” literal “creatures of a day.” I can’t help but think of Psalm 103: “As for man, his days are like grass; as a flower of the field, so he flourishes. When the wind has passed over it, it is no more, and its place acknowledges it no longer” (NAS, v. 15-16).

14. murmur: late 14c., “expression of discontent by grumbling,” from Old French murmure (12c.), noun of action from murmurer, from Latin murmurare, from murmur (n.) “a hum, muttering, rushing.” Meaning “softly spoken words” is from 1670s.

15. filament: 1590s, from Modern Latin filamentum, from Late Latin filare “to spin, draw out in a long line,” from Latin filum “thread.”

Gabriel’s favorite word (I asked, he answered):

outside: from out [Old English ut, from Proto-Indo-European root ud– “up, up away” (from various languages meaning “up, out,” “higher, upper, later, northern,” “all the way to, without interruption”)] + side [Old English side “flanks of a person, the long part or aspect of anything,” from Proto-Germanic sithas “long” (“long, broad, spacious” or “long, hanging down”)]. This may be my favorite word on the list for the way it says something essential about Gabriel. All the way to, without interruption—higher, upper, later—up, out—long, broad, spacious.

John’s favorite word (which is just to say a word he thinks is lovely):

bioluminescence: bio [from Greek bio-, comb. form of bios “one’s life, course or way of living, lifetime,” from Proto-Indo-European root gweie– “to live”] + luminsence [related to luminous, early 15 century, “full of light,” from Latin luminosus “shining, full of light,” from lumen (luminis) “light,” related to lucere “to shine”]. Luminescence first used in 1884. Prof. E. Wiedmann made a study of fluorescence and phosphorescence phenomena. He proposed the general name luminescence for evolutions of light which do not depend on the temperature of the substance concerned. [“Photographic News,” 1888]

Jonah’s favorite word (J substituted favorite thing for favorite word):

Charlie & Lola: Charlie, form of Charles, Germanic meaning “free man,” English meaning “man,” French meaning “free man.” Lola, form of Delores, Spanish meaning “sorrows,” Sanskrit meaning “moving to and fro.” Okay, maybe (as usual) Jonah knew exactly what he was talking about, though it seemed otherwise. Like Gabriel, his choice sums up his person: free man moving to and fro. I’ll leave the sorrows for another day… 

Nexus

I should be writing a review of St. Pamphilus’ Apology for Origen. And I will. In a minute. First, I need to share a bit or two of dialogue between Jonah and me.

He’s been pretty much obsessed with Spiderman since his cousins sent him a puffy muscle suit when he was two. And these days, the cartoons aren’t cutting it. He wants the “actually real Spiderman,” which means the live action movie. We found a copy at the library and talked about watching it together (so John or I could edit out the too violent violence and/or disturbing weirdness). And that’s All we talked about, from the moment it was in his hand until dinnertime. At which point we started the movie, and he became obsessed with the actual moment when Dr. Octopus becomes Dr. Octopus. Watching a movie with Jonah requires an entirely different approach to movie watching. There’s no blank staring at the screen or getting transported into a couch potato funk. It’s a highly interactive experience.

So anyway, as we walked home from the library, I told Jonah that Spiderman kind of makes me crazy. All that flying around and sailing from building to building gives me vertigo. Couple that with the movie’s generally high volume, and it’s enough to make me want to go into a dark quiet room by myself for a couple of hours or on a long walk. But I loved J’s response:

“Is it artificial colors for you? Does it make you crazy?”

The connections he makes! He knows that artificial colors mess with his system, by which he intuited that crazy action movies do the same to me. John called him a nexus, and it’s a fair representation of how Jonah operates—the center through which everything connects. And it’s hard not to get sucked into his “the world revolves around me” reality. Balancing our lives in relationship to him will always take some doing. When I told him that I hadn’t even met John when I watched the first Spiderman movie, he couldn’t quite understand.

“You didn’t even KNOW John Carl Estes?”

No, I explained. I haven’t known your daddy for most of my life. This is a relatively new thing we’ve got going on here. I met him at the bookstore in Kansas where I worked. His response:

“So did you be friends and decide to make a kid?”

Yep. Something like that.