Tag - surprises

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Sam’s Science
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Happy Days
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Apology
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Spelling Bee
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A Warm Breeze

Sam’s Science

Lately John’s reactions to minutiae have been extreme: he’ll suddenly stand up and scream at the top of his lungs. Frustration born of not finding the words quick enough I imagine, which doesn’t make it any easier — only understandable for those of us with the Autism Manual. It is of little use to the public at large, including those inside our educational institutions — but at least most people look at John and see his disability. His is evident.

But my Sam often passes for typical. Often. Which means when he acts atypical people are all what the hell? I’ve been guilty-guilty-guilty of this more times than I care to admit. We expect so much more from him, so much more than we do from his brother. When Sam’s reaction to a timeout for speaking out in class is explosive screams and a mad dash around the room, some are quick to categorize him as a “bad child.”

Sam spends all of his free time reading the encyclopedia for fun —  he is all “nano-technology this” and “Cambrian period that” complete with helpful and constant pencil drawings. So we signed him up for this after-school science program. His brain is in need of stimulation that an after-school science program would seem to provide. The weekly topics and experiments scream SAM.

So when John and I arrive to pick him up — after first negotiating the parking lot and John’s screams because I was unable to complete a crocheted Mars before we had to leave (yes, a crocheted Mars) — after negotiating screams and flailing limbs as we walk down the hallway because, I don’t know, I chose the wrong route? or maybe he was still upset about Mars and needed to scream some more about it? After all that, we arrive to the classroom and I see my boy huddled in a chair backwards, snot falling down his face, eyes red and still wet with tears. He sobs when he sees me. The instructor motions that he’d like to speak with me… “He was very rude,” he says “he talks a lot —a lot!” he adds with exasperation “and he doesn’t listen. It seems he can’t hear when he’s spoken to.”

He was in a timeout for nearly an hour. An hour!

Huh. So you see, I’ve forgotten. I’ve forgotten how well my boy copes, how often he passes for typical. I’ve forgotten to relay strategies to this young and inexperienced instructor. Once again I am taken by surprise that yep, my boy still has significant challenges! still enough to knock me over. I try to explain now Do you know what an IEP is? You do? Great, He has an IEP that is supposed to address some of his challenges. He really loves science, it may be helpful to give him a warning or two about speaking out before putting him in a time-out. Just makes it worse, I promise! 

This is the third session and the third time Sam has been miserable when I’ve picked him up. This last time is, of course, the worst. The program is not run by the school system but by an outside organization, so I don’t think I can ask for accommodations — or can I? I’ve contacted his team and am hoping for the best. He is desperate to continue. The instructor is glad to hear some things that might help but does not sound overly confident that he can handle it.

So there are these times? Times I just feel outside myself. Sometimes I think it may be the gaping stares from others that hurls me out of my body, a spectator to my life, to the situation. When John body-drops to the ground, my limbs feel leaden and uncooperative in the exact same way that his refuse to budge and part of me is above looking down at the ridiculousness of it all.

But Sam needs for me to be different.

Happy Days

You guys! John is singing! He comes home every day, a skip in his step, his legs in full gallop as soon as he steps off the bus. Well, let’s be honest, he is always in motion — there is just an extra-special exuberance lately. Once inside, he goes immediately for the itouch or computer and requests a smorgasbord of songs: the Days of the Week Song, Five Little Pumpkins, Wheels on the Bus, and of course, If You’re Happy and You Know It.

He sings, his voice small yet earnest and adamant:

If you’re pappy and you know it, cap your hands!
If you’re happy and you know it, clap your hands!
If you’re pappy and you know it, and you meeno meeno show it,
If you’re happy and you know it, and you really want to show it,
If you’re pappy and you know it, cap your hands!
…stomp feet! (stomp your feet!)
…shout HOORAY! (Hooray!)

One of his favorite dvds right now is Baby Einstein’s Baby’s First Moves. I know it’s meant for babies 3 months of age and older. I don’t think the makers intended it to be appreciated as much as it is by my autistic six-year-old. But here’s the thing: I never thought I’d see the day that he would come up to me, take my hands and place them over my eyes, open them and say “Peekaboo!” Or that he would climb into my lap and say “Touch your nose!” He has memorized the sequences in the dvd and he rattles them off to me expecting my compliance: “Twist! Shake! Spin! Touch your nose! Wave!” pause…big smile while grabbing my hands… “Peekaboo!”

This morning as he put me through his paces again,  I stopped him and said “Wait. John do it.”

“Twist!” I said, ready to help him move but he moved his hips all on his own. “Shake!” I said, and he shook his hands and little body. “Spin!” I said, and slowly he turned twice, looking at me over his shoulder the whole time. “Touch your nose, John!” and he brought his finger to his nose. “Wave?” I said, holding my breath. John has never been able to wave. Or point. But as I watched, he brought up his hand, palm facing inward, and he “waved” to himself. Oh the cuteness! The milestones! The interaction and eye contact! Yes, he’s six, but he has come so, so far.

These are things to celebrate.

School is still a big question mark. In a few weeks, I am scheduled to go in to observe — maybe then I will get some more answers. But if the progress he’s made and his happy nature is any indication, first grade is going swimmingly.

Apology

Sweet baby, I so often underestimate you. Can you forgive your mommy? I came into the room and caught you opening and closing the DVD player. I know you love to watch the previews over and over and over. But we’ve talked about this — or rather, I’ve repeated too many times to count: Do Not Open and Close the DVD Player!

So, of course when I saw you there, Mommy was a little irritated. We go through more DVD players in this house… anyways, I knelt beside you and said sternly, “No, John.” I must have startled you because your lower lip started to quiver in a way I’ve never seen your brother’s do, not even once. Your eyes filled with tears — wow, did it take me aback — I think because I’m so used to you ignoring me when I want you to listen.

But I think you’re always listening, just not letting on.

You climbed into my lap and put your head on my chest and said, “Sor-ry.”

My heart went still in my chest. I looked at your sweet face and thought I had misheard. “Sorry,” you said again softly. I’ve never heard that word from your lips, or seen you so keenly aware of a situation, or had you react to my voice in such a typical way.

“I’m sorry, too, baby,” I said.

Spelling Bee

Tired after a long day at school, a day that began at 3:30 a.m., he crawls into my lap, seeking a place to unfurl. His limbs are heavy and I hug him, breathing in the softness of his hair. “H… U… G…,” I say, “spells HUG,” I say and squeeze him again. He cocks his head to the side and studies my mouth.

“K. I. S. S.,” I try. “What does it spell?”

“KISS!” he says. I shouldn’t be surprised, Sam did this years ago, but I am stunned.

“C. A. T., spells?”

“CAT!” he shouts, now sitting up.

“H. O. R. S. E., spells?

“HORSE!”

“B. L. U. E.?”

“BLUE!”

Surely this is an advanced skill, to be able to hear the letters, visualize them in his head and then come out with the correct word?

All the times I thought I understood my son’s limitations and talents. All the times I’ve feared he wasn’t learning much. All the times I’ve read a bedtime book and allowed John to push it away. All the times I thought, Fine, Sam is the reader, not John.

All those times? I was wrong: I don’t know a thing — other than my love for that little boy is immense.

A Warm Breeze

John spoke to his daddy tonight. It almost feels like I dreamed it, but he did so several times and there were witnesses. They faced each other on the couch, one of those doodlepro books — The Backyardigans, I think — between them. Dad started to randomly draw shapes while John flipped through the book part. All the sudden, John paused to watch and said “Triangle.” We looked at each other, astounded. Erase the pad, try another shape. “Diamond.” Did we imagine it? “Rectangle.” Erase. “Circle.” “Square.”

Let’s try numbers: 1, 2. “One, two.” Erase: 3, 4. “Three, four.” Erase: 5, 6, 7. “Five, six, seven.”

Letters of the alphabet? “A. B. C.” Out of sequence? “P. G. X.”

Then, as he often does, John placed his hand over his daddy’s and we thought he would motion him to stop, or impatiently pull his finger. But instead John guided his dad to draw a circle. It wasn’t a perfect circle, and he said “oval.” Then he added two dots for eyes and a smiley face followed by two semi-circles for ears.

“Monkey!” he said, laughing. He lifted his eyes, looked directly at his dad, and repeated “MONKEY!”

Oh, the sound of his voice! So similar to Sam but yet uniquely his own. He started uncertain at first — quiet and low, a little monotone. But as he continued, his voice was like a warm breeze, stretching and reaching for us.

I cry a lot.

The pride on his face was so similar to when he slept through the night in his big boy bed. I am struck, over and over, by how much I don’t know, that we don’t know, about autism. How many times has he wanted to say something but was unable to form the words? How many times has he given up with frustration? And how many times have I not seen him struggle?

Because tonight it is obvious to me that he longs to connect with us. It is obvious to me that there is so much going on in there.

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