My sweet boy

     Being the dutifully involved parent and ever trying to make things better for her child, no matter how indirectly, I am the newly minted secretary of our school district’s PTO. An easy job really, one that makes it look as if I’m doing a lot of work when all I’m really doing is writing minutes from the meeting. Truth be told, I enjoy volunteering when I can. So much has been given to us, so much help offered, so much caring displayed, that I can’t help but want to give some of that back. Plus it doesn’t hurt in the karma department.

     Yet I suspect down the road, my memories of PTO will boil down to one in particular. At this morning’s district meeting for all K-8 parents, I watched my son’s class quietly come through the gymnasium on their way to music class. On their way back, I turned to wave at him as unobtrusively as I could, and he loudly whispered to his teacher, “Can I go give my Mommy a kiss?”

     What possible better Mommy moment could there be?

The Intangibles

      I sometimes have a difficult time figuring out exactly what it is that makes C stand out for  his peers simply because sometimes he is nearly indistinguishable from  them. “Quirky” doesn’t quite cover his different-ness, and “weird,” a word I’ve never really thought of as a negative, doesn’t really fit either. I admit to having moments where I’ve wondered if my inability to put my finger on why kids generally don’t seem to get C meant I had my own diagnosis with which to struggle.

     Yet I’ve come to conclude there are certain things we just can’t teach. There is only so much social skills work one can do before realizing that some qualities just are and always will be. Whether this is simply my own blossoming acceptance of how things are or becoming better at recognizing what C’s autismness means for him, I’m not sure. When he cried this morning in front of most of his class because another little boy wouldn’t let the bug crawling on his arm crawl over to C’s arm, it was one more lesson for me in the journey that is Understanding C. I’ve seen other kids cry and not get the response C had, but I watched as five other kids standing around him just stared at C like he was from another planet. It was just one more moment of many in which the collective consciousness of his peers continued to fill up.

     Too many of these moments can end up working against C in the future, simply because they add up in the present. I don’t want to be pessimistic about my child’s popularity (for lack of a better word) down the road, but there are times when I truly wonder if I’ll look back on these early events and know these were the ones that started it all. Just how many experiences like these does it take before he becomes labeled by the other kids as someone undesirable?

     I can’t do much about what happened this morning in terms of C’s behavior – I refuse to tell him not to cry at school, for fear of stifling his emotions altogether. I will encourage him to perhaps enjoy another child’s experience without trying to make it his own, although I’m not sure the message will translate. Most importantly, I will continue to try to help him build his own self-confidence so the potential pain of the future won’t be quite so sharp.

A handsome sparkler

     C is hyperlexic, which translates to an early interest in letters, numbers and logos, followed by very early reading. He could read almost before he could talk. His first day of preschool, at just shy of 3 years old, he walked into the room, looked up at the EXIT sign, and said, “E, X, I, T, exit!” His teacher asked me if I’d heard of hyperlexia, which I never had. I’m pretty sure we thought all three year olds knew how to read and spell the word “exit.” I took him home, wrote all the words he could say (there weren’t many at that time) on his magic doodle board, and he read them. We were astounded, and quite frankly delighted. He also figured out, at about 4, how to calculate someone’s age in money (I’m a quarter, a dime, and 4 pennies). And I still remember him wandering around the playroom pointing out every Fisher Price toy we had. He fits the hyperlexia diagnosis probably better than any other diagnosis he has.

     Generally, hyperlexic kids even out with their peers and then tend to fall behind in later years, when comprehension becomes problematic. At the moment, C is excelling in all things academic. C can decode just about any word, but he doesn’t necessarily know what they mean. Even when he understands what they mean, he doesn’t always really  get the meaning in context. We’ve had a few people who think he’s gifted academically, but I’ve never been completely convinced that it’s not just the hyperlexia. Time will tell.

     In the meantime, schoolwork has become somewhat more challenging, which has presented areas of concern, such as his recent answer to the question, “When was a time when you were pleased with yourself?” The question was in response to reading a story about a girl who is proud she won a spelling bee. His answer, “I’m pleased that my Aunt J and Uncle T are coming soon,” made clear his fundamental misunderstanding of the context of the word in the story.

     Yet there are entertaining moments as well. Never has this been so clear as today’s schoolwork that came home, requesting the kids use specific words in a sentence of their own creation. C’s responses had us all howling with laughter and glee.

          HARDLY – I work and play hardly. 

          HANDSOME – I am handsome looking, because I look good.

          SPARKLING – I am sparkling because I am cute all over.

     For this moment at least, I put away any nagging concern in the back of my head about academics in his future. If he can retain this kind of charm and self-confidence, I’ll consider his schooling a complete success.

Who’s that girl?

     An Angel has landed upon us. She is well disguised, with hair done, make-up on and wearing high-heeled shoes, but no wings. We know they are there, however - just hidden. She has made comments such as: “I want to make sure C is able to have the same snacks as everyone else;” “C, I know having the bigger box of crayons is important to you, and it’s not as important to some kids, so I think you should bring the bigger box;” and, “I moved his desk so he could see better, but I also moved the nice girl next to him along with him so he could continue to sit by her.”

     I’m pretty sure she is descended from a cross between a fairy godmother and Mary Poppins. C can barely say her name without a salacious little grin forming on his lips. He wants to check out books about her favorite flowers at the library so he’ll know more about them. We had to drive by her house last weekend so he could see her street. He was thrilled to know we can almost see her house from ours, and I picture him peeking out his window after lights out in an attempt to see if the lights are still on in her house.

     Mom’s not immune either; I have the feeling that this Angel is thinking about him after hours, wondering what she can do to further his enjoyment and learning. She patiently listened to all of his questions on the preview day, which wins major points in my book. Every once in awhile, someone really special comes into C’s life, and for that I am eternally grateful. She seems to get him, enjoy him and challenge him, which is difficult to wrap up all into one person.

     In case you haven’t guessed, Miss Angel, whose real name is Mrs. B., is C’s teacher in 2nd grade. But it may as well be Heaven to C.

It’s all about muscles

     Someone showed C muscles recently, and tied muscles to protein. I’m not sure if he watched the weight lifters on the Olympics or if he saw a picture of Popeye, but enter the latest obsession: protein counts in food. Despite my attempts to talk to him about a balanced diet, he really only wants to eat high protein foods. It has nothing to do with cravings, or what his body needs, but rather with muscles and numbers. 

     This is C’s latest in a long stream of obsessions having to do with numbers. The idea of each food having a different protein content is very appealing to him. It makes sense of his world – he can compare and contrast and order. He’s starting to notice the other numbers on the labels too. Tonight he asked me what “deriby filer” is. Slow Mommy, but it took me a few minutes of questions to figure out he was talking about “dietary fiber.” Not wanting him to go overboard on that one, I again brought up the need for balance in his foods.

     Perhaps I can use this latest obsession to help him both gain weight and eat foods he has feared in the past. The “failure to thrive” diagnosis that seems to follow him around like a lost puppy could maybe blossom into something resembling more than a big head atop a skinny body. If I could mock up a label for ice cream that reads “50 g protein” on it I might be in business. Or maybe I could turn macaroni and cheese into something desirable by giving it a very high protein content. Cakes, puddings and cookies? Yup, high protein. Eat all you want, kid. Rice crackers that he loves but have zero caloric value? Nope, C, low protein content, don’t eat those.

     I think I might be on to something.

Heartbreak

     As any parent with a special needs child will tell you, there are moments of extreme heartbreak. The moment when the specialist renders a diagnosis, or when you realize your child will struggle with something his whole life that other kids get in ten minutes, or when a school lets your child down. Yet often these moments come when you least expect them, and they are so swift and painful they take your breath away. Sometimes you don’t fully process them until later and you find yourself crying in the middle of the grocery store, reaching for your sunglasses and hoping you don’t see anyone you know.

     When I watched C wander around the playground this morning before school, aimlessly looking for a familiar face, something started to well up inside me. The time was only a brief five or ten minutes, but it felt like a lifetime. It’s not for lack of wanting to connect with someone; this child is about as social as they come. So I watched, while he walked around, anxiously looking for a friend to share his time. All the playground noise of the zillion kids running around faded from my ears as my chest swelled with a sob. There’s something so awful about watching your own child, whom you love so dearly and so completely, struggle with something so basic, so fundamental to his very existence.

     The moment became far bigger than it was, simply because it represents C’s challenges in the most profound way. He no longer approaches anyone and everyone with abandon, so he’s learned a lesson or two along the way. This is good and bad for the same reason: he’s more aware. Aware of some of the rules, yet aware he still doesn’t know exactly how the rules work. It’s a core issue of C’s version of autism.  

     The moment continued for me, while I later went about my day, sneaking up on me at inopportune times. Tears continued to drop here and there as I remembered his forlorn look as he milled about. Surely parents of “typical” children experience this at times, but I comforted myself by remembering that with the heartbreak comes moments (and there are more of these, truthfully) of extraordinary joy. Perhaps parents of special needs children experience the heartbreak and joy in more extreme ways, simply because there is nothing we can take for granted.

C-isms, Part VII

I want to be together forever with you, Mommy. So then you can buy me stuff.

MOMMMMMYYYYYY!!!!! THERE’S SOMETHING COMING IN FROM OUTSIDE MY WINDOW AND I THINK IT’S IN THE SHAPE OF LIGHTNING!!!!!

I’m a little worried about A’s box of crayons. He doesn’t have the aquamarine crayon.

(As he’s pouring water down his swimsuit trunks) I’m washing my dooder. It’s really dirty. How did it get dirty, C?  It’s been wiggling around a lot and it got really dirty.

Wanna know something cool about me, Mommy? I can read words on a 4th, 5th, and 6th grade level!

Mommy, if I saw you at the store, and you wanted to be selled, how much would you be?

All’s well that ends well

     He’s back, he’s fine, C is delirious, and all is well with the world tonight.

He’s okay, I think

     I’ve been a single parent for the last couple of weeks, as Husband has enjoyed his 15 years-in-the-waiting trip down the Colorado River through the Grand Canyon. I used to love it B.C. (before C) when Husband would go out of town; I’d eat cereal in bed, stay up late reading, and watch chick flicks. Since C’s birth, however, I have enjoyed Husband’s trip less and less. The bed is too big, the house is too quiet, and things just don’t feel right.

     This particular trip, one I ultimately declined to join (see here), has been challenging. C is at a tiring age (when is a restful age?), which leaves us zapped on a good day. Having all these days by myself is an exercise in new zapped heights. The worst, however, is the complete lack of communication available. Other than one phone call from Phantom Ranch (the only place on the canyon floor with a landline) on day 6 (well over a week ago now) of the trip, there is no way to have contact. C hasn’t said much, but the extra hugs and snuggles required throughout the days, especially at bedtime, have said it all.

     You can therefore imagine my despair at hearing the news that there has been a massive flood in one of the side canyons. After some initial panic, and quickly finding something else for C to do, I devoured any internet information I could find. I have it in my head Husband is probably okay. I found an emergency contact number for the park service and talked to a ranger who said he’s not on the list of people who have been evacuated. As lovely and pleasant and calming as she was, I couldn’t help but wonder why the concern about people who are evacuated; it’s the un-evacuated I’m worried about. Having his name on a list of evacuees would be just fine with me, thank you very much.

     I’ve been fielding calls all evening from folks whose spouses are with Husband’s trip and others who know Husband is on a trip. Probably, Husband is sound asleep, in a haze of post paddling exhaustion. Couple that with a bit of the good tequila they took and a beer or two, and he’s likely off in la-la land and will later chuckle at the concern of those of us topside.

The rest of the story

     I’ve had a few requests for a little more context about yesterday’s post, so here’s the rest of what I had originally written, but didn’t include:

     We’ve always tried to shelter C from news and violent images; not only because we want to protect his emotional health, but because he is so innocent and naive. Even though his peers have mostly all seen Batman, Spiderman and every other “man” movie, C has no interest. Developmentally, he hasn’t hit the “boy who wants to see grown up movies he really shouldn’t see” stage. Combine that with his fear of death, and real world issues become way too scary for him to contemplate. Consequently, we’ve not yet talked with him about war, the military, and the like. When he asked what a soldier is, we told him a soldier protects our country. The inevitable, “Protects our country from what?” question never followed, thankfully.

     So yesterday, you can imagine my surprise when C said to me, “Mommy do you want to know what I’d do if I was President? I’d not let anybody shoot anybody else.” To my knowledge, his only knowledge of “shooting” involved the spaceship shooting on Space Invaders. He might have borrowed this sentence from a classmate, or perhaps he knows more than I thought. I asked him some more context gathering questions, but all I could get was that they were talking in class about what they would do if they were elected President.

     I asked him tonight if he knew what shooting someone meant, and he said no. I asked him if he knew how a person would feel if they were shot, and he said no. I asked him if he knew what a gun is, and he said no. “OH, I’ve got it, is it like a water gun?” he asked. I told him it was more serious than that, and then he quickly moved on to building a tower with blocks, happily unaware that we’d just had one of our many conversations in which I feel completely out of my league. Trying to figure out how to share age appropriate lessons with a child who is the equivalent of a 10 year old 3 year old is always a challenge.

     “But would it tickle?” he asked a moment later.

     Score: Innocence – 1, Worldliness – 0.