Hard and Soft

15 09 2013

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Life with autism is hard sometimes.

Like when you’ve had a couple of bloody noses, and so every time it starts to drip after that you think it’s going to be bloody. Then you yell to your mom, “It’s a red nose!”

And she says back, “No, it isn’t. It’s a white nose.”

“It’s a red nose! I need a wiper!”

So your mom hands you a tissue and you dab your nose and sigh in relief when it comes away not-red. And you walk around for the next several hours with a Kleenex held up to your face, occasionally changing it (and not always remembering to put the used “wiper” in the garbage can).

Other times, someone takes a bath, and for some reason you get extremely agitated by the sound of the running bathwater. Your mom can’t figure out why it’s making you so crazy, and all you want her to do is stop holding you so tightly so you can run into the bathroom and turn it off. So you scream and yell and and try to squirm out of her arms but she won’t let you. She tries to talk calmly but she just doesn’t understand the urgency of turning that water off. You don’t know why–yelling, “Turn it off! No more water! Mom walk!” seem self-explanatory enough.

And when the water stops, you give a shuddering sigh and let your mom wipe off your cheeks because it seems to make her feel better. Then you tuck your head under her chin and ask her, for the first time, to read you a book.

Her heart melts a little bit.

You snuggle in against her and she sighs, just as tired as you are from the recent wrestling match. Then she picks up the book and leans back into the pillows.

They’re soft, and you relax into them together.

 

 





Sacrament Meeting Adventures

3 02 2013

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Today was an experience.

I’ve been taking children to church pretty much every Sunday for almost 13 years. I know when to hold ’em, know when to fold ’em, know when to walk away, and–you get the idea.

And yet, today was harder than normal. Maybe it’s because I had the flu earlier in this week–I’m still regaining my stamina! I will blame my chicken-heartedness on that.

This morning, getting ready for church was actually better than usual. I glanced at the clock and thought, “Hot dog! We’re going to be on time!” But then, just as we were walking out the door, Colby cried, “Circle waffle! Want two circle waffles!” I handed him one that was sitting on the table (his unfinished breakfast from earlier) and jammed another one in the toaster. The girls were (thankfully) in the car, and Zack was doing something (I’m not sure what) but at least he was dressed. I ejected the waffle from the toaster and put a couple of gobs of butter on the top. We got in the car and were on our way.

We pulled up to the church at about 11:01. The big kids walked dutifully inside while I unbuckled Colby. He was still holding his waffle; the butter looked especially unappetizing. I tried to smear the butter chunks around with my thumb. Ick. The other kids hadn’t closed the van door, so I towed Colby over to the other side to do that before crossing the parking lot. He kept saying, “Mama hug! Mama hug for back!” but I had a giant church bag swinging from my arm, making the addition of a 40-pound boy an awkward proposition. I encouraged him to walk by holding his wrist and tugging him along behind me.

After a few moments (a few s-l-o-w moments), Colby said, “Need new pants. Pants falling down!” I looked back at him and had to laugh.

[Digression: One of the markers of autism is sensory processing issues. Some kids feel too much and get too much input from their environment, and others feel too little so they seek input from their environment. Add to that a rigid, routine-based mind, and you have a little boy that doesn’t like new clothes. I urge all of you, everywhere, to be kind when you see a kid wear the same shirt day after day after day. Or if you notice that a kid’s coat sleeves only go halfway down his arms. You might look at the kid’s mother (who, let’s face it, looks fabulous) and think, “Why won’t that lady spend some money on her KID?”

And I will say: he has a new coat, but he refuses to wear it. He has other shirts, but for some reason has attached himself to this stripey one. Naturally, it is one I bought at Goodwill, and so is several years old, and there is no way I can find one in a bigger size. (When we transition to a new church shirt, it will be PLAIN WHITE.)]

Anyway. I put new pants on him this morning. He was kind of distracted and didn’t notice when I first put them on, so I assumed we were good to go.

Not.

Not good to go.

Once inside the church building, I used the internal elastic waistband and buttons to cinch them a bit tighter. (By the way: best. invention. ever.) The other kids were already sitting in the chapel, and I heaved a sigh when I realized we hadn’t missed the opening hymn. We scurried inside, Colby still balancing his waffle on a paper towel and me still balancing my gigantic church bag. We sat down, and immediately Colby said (in a voice that I would not term as “inside”), “Pants wet! Need new pants!”

I closed my eyes. I should have forseen this. What, in the name of all that is glorious, had I been thinking when I put him into new pants that morning? Well, beside the fact that his other church pants were at his dad’s . . . and that was it. The new pants were our only option.

His new pants are too long, so I had used safety pins to shorten them. He could feel the safety pins touching his legs, and it felt wet. He needed new pants!

He yelled off and on about it through the prayer. I took the pins out as soon as the prayer was over.

Good, right? Pants are up, and are not wet. Smooth sailing for the rest of sacrament meeting!

Except that it wasn’t.

Sacrament meeting, as many parents can attest, is not always restful. We have a fairly good system, but we were not at our best today. Besides Colby feeling cranky and clingy, my girls fell into an elbow war that they would not cease until I sat between them. I sighed enough to fly a kite for 20 minutes.

At one point, Colby opened his mouth and let out a little yell. I’m not joking here–it was a little cry for a long moment, like a baby bird asking for a bit of regurgitated food from his mother’s beak. Not a big deal, really. It only became a problem when Zack, sitting on the bench right in front of us (he’s done that for years; apparently, we’re embarrassing to sit next to) turned and said, “Colby, no yelling!”

To which Colby answered, “NO YELLING!” In full voice.

I gathered him in my arms while giving Zack a look (he, of course, looked back at me, all injured innocence, and mouthed, “What?”), and Colby yelled, “Need a time out!”

We took a time out in the hallway. I rubbed his back and he repeated, “No yelling,” several times, along with, “No Primary. Primary in twenty days.” I thought of the words of the opening hymn which said, “Holy day, devoid of strife.”

I started to laugh.

Not in my galaxy.





People Are Good and Colby is Six

21 12 2012

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This is the third time I’ve written this post.

WordPress, what’s happening to us? We used to get along so well . . . now you’re eating my posts and I don’t have time for it. I should be packing right now, or at least doing the dishes so they don’t grow stuff while I’m gone.

Instead, we’re fighting.

I hate it.

Okay. Here’s the plan. Call it a compromise. I will write really fast without touching my touch pad thingy. I will try really hard not to push any of the wrong buttons. (But, c’mon–you can’t have a post about Colby without pictures. Of Colby. Srsly.)

The dolphins you see above are from many kind people who reached out to our family after our car break-in and subsequent dolphin crisis. None of them are Stinky, and so none of them are loved quite like Stinky, but they have all been slept with and loved. Thank you so much.

People are good.

Colby is good, too. Surprisingly so. I guess he’s proving what they say (although I’m still not quite sure who “they” are): kids are resilient.

Also, this happened yesterday:

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This is the first time he has “gotten” what a birthday is. It was a blast seeing him be so excited about blowing out the candles and opening his presents.

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I was talking to a friend who is an OT (occupational therapist) one time about how exciting his milestones are. I said something like, “It’s not that I love him more . . .”

“It’s that it’s taken him so much longer to get there, so you have a reason to celebrate.”

I’m glad she knew what I was trying to say and said it for me.

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Dude.

Most kids have a “big” bike by age six–some even ride without training wheels. Colby’s small, though, and doesn’t have the greatest sense of balance. This is perfect for him (especially when you consider he’s been riding his big sisters’ Barbie big wheel for two years). (Except that’s one thing I totally love about him–he doesn’t notice stuff like that so it doesn’t bother him. Still, this bike is definitely faster and sturdier than Barbie.)

Love, love, love that kid.

P.S. Hate, hate, hate the new WordPress media loader. Hopefully the pictures won’t be all squishy when you look at this. But if they are, you should be able to see them by clicking on them. I don’t have time to try and fix it right now, so sorry for the extra step.





R.I.P. Stinky

11 11 2012

The other night I took the kids to our monthly potluck at the church. We got there a little late, and I was tired. You know, the usual. I ate my food, and then ended up eating Colby’s food, too, because it’s different food than what we have at home so he won’t eat it. (Again, the usual.) I saw a lot of people I thought I should go and talk to, since our ward boundaries were just changed, but I was feeling pretty lethargic. So I looked around and tried to remember people’s names, when my friend came up and said, “I think your car might have been broken into.”

Seriously? My Kia is kursed.

I took the time to deposit my paper plate in the trash can before I took a deep breath and went out to the parking lot.

There was glass everywhere. I groaned a little bit. The driver’s door was open, and only the one window broken, but it wasn’t a carefully executed crime. Hasty, if you know what I mean. The car parked next to mine had its window shattered as well. In fact, that’s probably why mine got hit in the first place: it was conveniently located next to a big Expedition. Because I ask you: who breaks into a Kia?

A girl that noticed the break-ins first had called 9-1-1. I took the phone that she handed me and talked to the dispatcher as I looked inside my minivan. The bag in the front seat was gone.

She was giving me instructions, telling me what website to go to to file a police report, but I was terribly distracted.

The bag in the front seat was gone.

I handed the phone over to the Expedition owner and started to shake.

There was an iPad in that bag. And Colby’s backpack (yes, the one he wears to bed every night) that had his kindergarten notebook inside, charting his daily progress so far this year, noting the first time he answered a question asked to the entire class (hasn’t happened since, I don’t think). But the thing that made me feel like I’d been dunked in ice water was when I realized Colby’s dolphins were in that bag.

He had three dolphins that were identical. One, for some reason, was superior. Consequently, it was also the most chewed on, rubbed, and loved.

This extra-special dolphin was dubbed “Stinky,” because he really was. We took him camping,

to the zoo,

and to concerts and dance recitals. Any place that was weird, Stinky came with us to give us an island of normal amid the strangeness. If Colby could just suck on Stinky’s tail for a few seconds, we could avoid some meltdowns. If Colby could smell Stinky and give him Eskimo kisses, he could calm down faster. If Colby could play with the stuffing poking out of Stinky’s side, he had something to focus on.

I’m not gonna lie: Stinky made life easier.

So as I tried to assimilate that my car had been broken into and what I needed to do to get it repaired, my heart was wailing, “Oh, my sweet baby! What will he do without his Stinky?”

The hardest part for me is knowing the thieves glanced at those dolphins and saw a bunch of ratty stuffed animals: nothing of worth.

And they threw them away.

My sweet boy, who deals in the concrete, has no concept of the word “forever.” But my heart aches when he goes to bed at night, crying a little, and saying, “Dolphins all gone. All gone dolphins.”

I don’t care about the iPad. I honestly don’t. I’ve even been able to doctor up a backpack so that it is a fair exchange for his old one (although he hasn’t asked to wear this one to bed). But it really burns me up that my son’s best friend was stolen, and most likely discarded.

Because even though to most people Stinky was worthless, to us he is irreplaceable.





Oops

5 11 2012

 

We missed the bus this morning. We were running down the street to the bus stop when it passed by. Colby saw it, and wept. “No bus. No bus. Bus on Tuesday. Bus tomorrow.”

I took him to school, thinking he would enjoy running around the playground in the extra minutes before school started.

Nope.

Even though the playground is one of his favorite places ever, he wanted to go and stand by the wall (which is what he does every morning when he gets off the bus).

So we did.

Hopefully the change in his routine isn’t a deal-breaker today.





This Boy . . .

29 10 2012

. . . is a full-fledged kindergartener.

He gets homework.

He loves going on the slide during recess.

And his teacher tells me he is a hard worker.

The other day, I laid down on the floor for a little nap. He came into the room. “Mom is taking a nap,” he said. Loudly.

“Set a timer!” (Also loudly.)

“Okay, okay.” I was not speaking loudly. I was mumbling. I took out my cell phone and set the timer for ten minutes.

“Okay, set the timer. Ten more minutes!”

I slipped in and out of the fog.

“Nine minutes!”

“Eight more minutes!”

Occasionally, one of these updates would be punctuated by a shove to my head. (This is where I update my nap post to include the phrases “quiet place” and “a door that locks.”)

Truly, though, Colby’s ability to understand timers is a blessing. It makes turning off the iPad much easier. I’ll say, “Time to go to bed!”

And he’ll say, “No bed! Just one more minute! Set timer!”

So I’ll set the timer, and he’ll watch it count down instead of playing his game, and then he’ll switch the iPad off as soon as the timer reaches zero.

Brilliant.

At this point in our day, he’ll run upstairs into my room, saying, “Colby sleep on Mom’s bed.”

“No way! You’re sleeping in your own bed!”

“Sleep in tent?”

“Okay. Go get in the tent.”

He hasn’t actually slept in his own bed for like a year. There’s a little tent set up in his room. Our neighbors gave it to us, along with a big bag of plastic balls: mini ball pit! I put the balls away long ago, and he has his blankets, pillows, and dolphins piled up in there.

He crawls in and I bring his toothbrush and brush his teeth. (This sometimes includes a toothbrushing song, unless he says, “No songs.” Then I try and get all available surfaces cleaned before he bites the toothbrush and I have to yank his head around until he lets go.) Sometimes I floss his teeth with a flosser, and we count to 18, one for each space I dig into. If we don’t floss, then he says, “Frosting tomorrow. Frosting later.”

Then he says prayers, which lately he has taken into his head to say as fast as possible. I have to stop him before he says “Amen” by saying, “And please bless . . . ”

“Please bless Grandma in the nameofJesusChristAmen.”

Then I kiss him (because he is completely kissable at all times) and he wipes it off. So I kiss him again, somewhere else, and he wipes it off. If I don’t say, “Hey!” in a grouchy, offended voice, he reminds me.

So I kiss, he wipes, I “Hey!”, and he laughs until I’ve kissed every crazy place I can think of.

Then he puts on his back pack. (This is new since starting school this year.) Sometimes he has to run to my room and look at himself in my full-length mirror. He looks at himself with a kind of a trace of a smile. Then he’ll turn to try and look at his back pack while it’s on his back. First one way, then the other. When he’s satisfied it’s the most perfect back pack in the world (or whatever it is he’s looking for in the mirror), we head back to the tent to go to sleep . . .

. . . after we read the bus book. “School Bus, by Donald Crews,” I say. By the time we get to the end, where I say, “Home again,” and then I turn the page and I wait for Colby to say, “Home again,” I have yawned a couple of times. When I yawn, Colby laughs and says, “Mom is tired.”

I have to say, “Yes, Mom is tired,” or he’ll just keep saying, “Mom is tired” until I agree.

Bedtime yet? Not quite yet.

“Okay, five more songs.” When he says this, he’s laying down on his back (pack) or his side, and he reaches his hand up in the air, his five fingers spread out to show me how many.

“What song do you want first?”

“Okay, five more songs.”

“Yes, five songs. What song first.”

“Okay, Baby Mine.”

“Fast or slow?”

He changes this part up every night. He’s been on a fast kick lately, where he thinks everything is so funny when it’s fast (which, when you think about how popular The Chipmunks are, must be a kid thing), but he had me sing this slowly last night.

I yawned about six times. “Yes, Mom is tired. Mom is always tired.”

The latest favorites for night songs are “Baby Mine,” “Good Night” (ala Beatles), “Search, Ponder, and Pray,” “Keep the Commandments,” and “If the Savior Stood Beside Me.” He ticks each song off on one of his cute little fingers, reminding me of the count when each finishes. “Just three more songs. Okay, three more songs.”

And then, at last, he goes to sleep.

Even though I say, “At last,” I love it. He is such a sweet boy.

Speaking of being a sweet boy, and of Primary songs, yesterday was the Primary program in our ward. He didn’t stand up for many of the songs, although I did see his little fingers making the rain come tumbling down when they were singing, “The Wise Man and the Foolish Man.”

Eden was helping Colby with his “part,” the time when each child says something in the microphone. He was the very last child to go. This was good, because then he had a chance to see all the other kids doing it. It was also bad, because by the time it was his turn, he was D-O-N-E. (Although frankly, he was probably done by the first song.) Eden went down from her spot on the back row to where Colby was sitting. She bent down and was talking to him. The congregation waited. She kept trying to convince him to get up and say his part. It felt like a long silence, though it was probably only a minute.

I saw her turn around and crouch, and I knew Colby must have requested a “hug for back.” She took him up to the microphone piggy back, and then said into the microphone, “Colby’s goal for this year was to choose the right.” In her hand she held up the CTR shield that Colby had written CTR on earlier this year. Colby had his arms around her neck and his head resting on her back.

And he was smiling.





A Magical Moment

30 12 2011

I’m back from an almost-perfect Christmas vacation to Idaho with my kids. I should probably be unpacking or cleaning my house.

And yet I blog.

A Magical Moment

Here’s my little redhead on Christmas Eve, trying on the stockings.

The next day, he was a bear. Merry Christmas! If any cousins got within a four-foot radius of him or his toys, he would scream, “Nooooo!” with his hands on his cheeks. (Several days later I took him to the doctor and found out he had a double ear infection, which could have been part of the bearishness.)

Also, he ate a lot of candy and not much food that morning. I tried, but couldn’t even get him to eat toast, which is usually his favorite. Add in his autism and the disruption of his normal routine by being in a different place with different people, and church was pretty much a disaster.

By the time I’d been hit and head-butted and a cause for general distraction amongst the congregation, I was ready to pull the plug. Finis. The hall for the rest of the meeting.

The final musical number began just as he slipped from my grasp once again. I sighed. Do I run after him? This was where I weighed the disruption he was causing in the aisle to the probable disruption he would cause after I grabbed him. The grabbing side was winning when I heard two violins soar above and through the argument my brain was having with itself.

I was going to write, “Now, the violin is not my favorite instrument.” That’d be a true statement. But then I tried to figure out what was, and I didn’t really know. What I do know is that whenever I hear someone playing an instrument with not only skill but with feeling, it’s almost like magic.

This violin duet was like that for me.

I got chills.

I had a hard time breathing.

I started to cry.

It wasn’t until the song was almost over that I remembered I had a child who might be disturbing people in his path. I looked over and saw him stretched out in the aisle six or seven rows ahead. He was on his back, completely still, listening.

When the last notes died away, he brought his hands together several times in silent applause.

 

Magic.