Tag - routine

1
Looking Up (And Moving On)
2
Sam’s Science
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Digging Out
4
A Post About Snow and Sanity
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Sleep is What I’ll Do Next Year
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December

Looking Up (And Moving On)

Signs are everywhere, did you know? They are on houses and in stores, they are on TV and in school — and of course they dot roads and highways. They are part of the landscape but you don’t really notice them, do you? You just accept that they are there, all with messages we’ve heard before: No u-turn, slow down, curved road ahead.

Hexagons and triangles, like STOP and YIELD, are John’s favorites. From the time he could walk, he’d race towards the tall and towering: his gaze up, his feet fast. Strapped in a stroller, he’d lean forward and flap with excitement at the sight of the 2-hour parking signs that lined our road. At each one, he’d turn and follow it as we passed, like they were having a conversation.

signs1 copy I’m not sure when he began counting the signs as we drove past them, but maybe he was all along.

“ONE sign,” he says as we drive to the library, passing a YIELD.

“TWO sign,” as the SPEED LIMIT 35 MPH appears.

“THREE signs,” he says, U-turn ahead.

He counts not just the ones on our side of the street, but the ones with their backs to us on the other side too (so that now even I’m craning my neck to see what they say).

He is my backseat tour guide.

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After school we drive down our long dirt road and here? Here there are signs posted on trees. So many trees, so many signs — mostly with warnings about not going too fast. I don’t see them anymore. Why? Because I am gripping the wheel over potholes and bumps. I KNOW the speed limit is 10mph, thankyouverymuch. The talking from the backseat goes up and down with the car’s movement. At first I think it’s Elmo’s World, He’s scripting a video. It sounds like Wansinitry, tasinitry, thrasinitry — Elmo talk.

And suddenly I understand he is saying:

“ONE sign on tree… TWO sign on tree… THREE sign on tree.”

When we get to the last one before the driveway, he proclaims, “SEVEN SIGN ON TREE! WE’VE EARNED A STICKER!” and he waves Elmo high, triumphant. Now he does it every day and each time I smile. His face is so happy.

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The comfort of these symbols nailed to trees and on posts — that at the end of a long road you are home. You struggle with disappointments big (we already know those) and small (the clouds for the beach, the Teletubbies CD already checked out at the library) — but at least the signs are there, if you’re looking and listening for them. Signs to point you home.

I suppose we all do the same, marking off touchstones one by one: The morning alarm clock, the coffee brewing, the cat rubbing against a leg to be fed. Meals made, lunches packed, work at the computer. Time passes and you trust in the familiar signs you’ve come to recognize as yours.

And if all the signs, ALL the signs were there all along? What else is to be done but to forgive and move on? Not the ones who hurt you (although they say that is necessary to your survival and you know it and you’re working on it but it’s not easy and not imminent). You stopped looking up, you see. Signs all the way back to the very beginning had you known to look. Like magic, you believed in the trick and ignored the sleight of hand.

No —forgive yourself. It’s time.

January 2007

January 2007

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.

Digging Out

Fingers and toes crossed over here: if all goes as planned, two little boys will return to school tomorrow. Twelve long days. Nearly 40 inches of snow has fallen during that time and as ice packed streets give way to pavement and weighted branches sigh with its release — I stand at the ready to reclaim my house. I probably shouldn’t be so happy, but I am.

I know I’m not alone, my cry is just one in a chorus of tired moms and dads who are certain they are the worst parents ever for turning on the TV as soon as they wake up. I admit: I’ve given up on being creative.

We have been through every game, book and craft. We have colored and cut, read and baked. Sam, once unable to manipulate the Wii controls, has now mastered Mario Kart and is completely under its influence. I was always the mom who said Video games = bad, and My kid will never… and all it took to fell me was this white stuff.

Plus, All the other kids are playing it, mom? I fell for that one. Every play date we’ve hosted has had a little boy begging me to let them play the Wii, the Wii Sam’s dad plays all the time. Except Sam had never played it because his mom is so mean. Flash forward 12 days: now Sam is starting to teach me. Social skills, right?

And John? John could care less about the games, the crafts, the baking, the TV. He is a hard little boy to entertain. Up until today, the only thing he has wanted to do is play with the itouch. He has asked for it every morning as soon as his feet hit the floor. And every morning I’ve made him wait, making him cuddle with me (which he does with little complaint), then trying blackmail, First breakfast, then itouch. It was so gratifying today to hear him reply, “Oatmeal?” since I know he’s finally understanding the terms.

We have two itouch in rotation, mine and his dad’s. Each is loaded with games and videos and songs. It is understatement to say it is his favorite toy in the world. An expensive toy at that, one his dad has missed during this long Snowpalooza. I tell him, You get to go to work! Leave us your itouch, it’s the least you can do! John plays with one while the other charges. He jumps around laughing, his little fingers flying over the touch screen until the battery is suddenly, sadly dead — the moment punctuated with wails and a thud — the sound of him flinging it across the room. It’s love-hate with him, although mostly love.

But in the last few days, he has started to ask, “School?” and “Sam’s school?” and “Library?” I think he misses his routine as much as I do. Today he tired of the itouch before the battery even quit. He wandered down to the play room and after too much quiet, I went to investigate and found him amidst this scene:


What a boy, what boys! I still crave the silence that tomorrow morning will bring, but I will miss this. A little bit.

A Post About Snow and Sanity

On this, the eve of Colossal Snow Storm #2, we pause to ponder how the shortest month of the year already feels like the longest. Last week we had a snow day for a mere six inches — can you imagine? Wimps.

Well, no longer — the Blizzard of 2010 dumped 27 inches on us three days later. No school today, no school tomorrow, I dare say there will be no more school until March.

This area of the world shuts down at just the threat of flakes, so you can imagine what a mess we’re all in.

I am stuck inside with two boys who thrive on routine and we are sorely lacking any — unless you count the consumption of sugary cereals in front of the TV all day. We can’t even go out and sled the snowy slopes, all because Sam had surgery three days ago.

The things I forget to blog about! He is fine, he had a hernia repair which was scheduled months ago and required delicate and thoughtful social stories, not to mention blackmail. And presents.

The threat of getting stuck in a blizzard was nothing compared to the thought of postponing his surgery and starting to prep him all over again.

Lots of drama, lots of waiting, lots of anxiety. Even though John had much more serious surgery as a baby, I felt no less emotional watching them put him under. It was so much harder, I think, because he was aware and he was scared. In the end it didn’t matter how well we tried to prepare him. He refused to change into his hospital gown, which is how I found myself dressed in scrubs carrying him kicking and screaming into a cold and stark OR. I will never forget his screams as they tried to hold him down for the anesthesia — they twisted my insides raw.


It’s not easy to turn your boy over to a room full of strangers.

Well. It was fine, he was fine, even though it took a full hour for him to wake up. We made it home just as the first flakes started to stick to the ground and huddled together for the duration. And here we are: stuck inside, no routines except for the new Snow Time ones we are creating.

Sleep is What I’ll Do Next Year

Thank you to everyone who emailed or posted suggestions about our sleepless nights. We are still sleepless ’round these parts but have fallen into a better rhythm. We increased the melatonin dosage after consulting with our pediatrician. It still is magic getting them to fall asleep, but John continues to wake every night between 1:30 and 2:00. What’s new is that instead of the manic hours spent wide awake, he has started coming straight to our bed, climbing in between us, and going back to sleep — probably two nights out of three. I can’t help but wonder if this is now turning into a behavioral problem (i.e., he can’t fall back asleep without us).

But hey! Sleep is sleep! Who cares if there’s a four-year-old fighting for covers?

Of course last weekend, we spent one extra-miserable sleepless night when the apartment we’re staying at flooded. Yes, it really did. Flooded. After noticing how fast both boys seemed to be having “accidents” while playing in the living room, I sat down on the floor next to them and quickly realized they were playing on saturated wall-to-wall carpeting. We were moved to an upper floor apartment while they brought in fans and hauled out soggy carpet pads.

I don’t think I could have written this past year.

Repairs on our house have progressed but not nearly quick enough. We have walls and a ceiling and fresh coats of paint… but still no floors and to add to the mess, newly discovered water damage in the basement. When extinguishing the fire, the fire department was able to keep water damage mostly to a minimum, but not enough to prevent it from trickling all the way down two floors. Now the basement ceiling will have to be removed and aired out.

End of October. Maybe.

December

Oh, December, where have you gone? And how (though thank god) is a new year barreling down on this family so fast? It’s been a month full of sickness, hibernation and kids sent home from school with colds, fever, ringworm (which I used to think was an actual parasite and not some fungus). Still, yuck.

Also a month of insane shopping where we learned this valuable lesson: if you enter a toy store with the express purpose of finding two presents for each of your children, you will instead buy out the entire place as you run down the aisles gleefully throwing toy after toy into your cart. When home you and your spouse will look at each other a bit dazed and wonder, Should we put some of this away for their birthday? and then decide Nah.

There is talk, though, of putting on the brakes next year. Maybe.

This month also marked their official first haircuts. What do you mean they look like girls? We only waited until they were three. Sam thrashed around and emerged with a pretty trendy “choppy” cut. Although John cried, amazingly he sat very still and has a proper little boy cut, over the ears and everything. I wasn’t there, I refused to watch their curls drop to the floor along with the last vestiges of babyhood: Their dad and older brother took them to Cartoon Cuts, where the experience, as reported, was positive (though Daddy really never wants to do that again).

And it was also a month of baking. When all committed to paper, twenty-five teachers, therapists, bus drivers and aides are part of our lives. So I baked. And baked and baked and baked. I will never bake again, but at least I have a terrific holiday bread recipe now. I made them in mini-loaf pans I found at Michael’s for $1 each and then adorned them each with an initial ornament and ribbon.

Token colds gave us a short reprieve so that we could go get our Christmas tree, but alas — Christmas Day brought with it a stomach virus and two very sick little boys and two very tired and very sick parents. We have all been living together in our germ-infested prison, I mean house, for the last several days.

We are just emerging. And not to be all Bah Humbug, but I can’t wait until the holidays are done and Routine and Order and Back-to-School are the words of the day.

That being said, still, Happy Holidays to all.

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