Tag Archives: Parents

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Awareness? Acceptance? Today, ‘home sweet home’ is enough

Home sweet home,” said Owen yesterday, as we returned from our spring break trip to visit family in Ohio.

“Home sweet home,” I echoed, as I often do with his comments. The repetition seems to reassure him that I’ve heard him, and he’ll often repeat himself until he gets that reassurance.

Sure enough, that ended the back-and-forth cycle. As we unpacked and started the laundry and settled back in, however, I found the line reverberating in my head. I’ve written before about how little things aren’t so little when it comes to kids, and especially with kids on the spectrum. As one of the latter group, Owen is inherently a more anxious kid who has more trouble fitting into social situations and more difficulty communicating within those situations than neurotypical kids.

Yet with those three little  words, he communicated that home is a safe place. A place where he fits in, feels comfortable, and is happy to be.

Wow. How huge is that? Now, that’s not to say home is the only sweet place. He couldn’t wait to leave for the trip and see his cousins, waking at 3 a.m. on departure day. Same thing happens for Mackinaw City, our annual summer vacation destination.  And I know he feels at home in his classroom. But with that comment, I know home is THE place. And that is huge.

Like a lot of other parents, I tie myself in knots, wondering if I’m doing the right things/enough things to help him. Too much advocacy? (= bellicose parent?) Too little advocacy? (= missing opportunities?) Too hands-on (= fostering dependency?) Too hands-off (= leaving him to flounder?) An extra speech therapy session or ABA? Prompting replies when he stays silent? What’s worth a meltdown? What to do? Or to do anything?

Today is World Autism Awareness Day. Like a lot of things in the autism community, it’s not without divisiveness (scroll to No. 17 of Autistic Hoya’s excellent summary), awareness vs. acceptance being the controversy du jour. But for today, I’m going to repeat that line to myself.

Home sweet home. That home, that sanctuary, is a place that my husband and I have created for our son. He is aware of it. For today, I will accept that as enough. Maybe even plenty. The questions can return tomorrow.

With 1 in 50 on the spectrum, I bet you do, too.

With 1 in 50 on the spectrum, I bet you do, too.

- The letter H brought to you by Daily Drop Cap.

 

 

 

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The Pied Piper of autism

Tuesday, 8:30 a.m.
We are in the garage. I am sitting in the driver’s seat, trying to read a book to my four-year-old daughter in the backseat while my seven-year-old son with autism screams outside the window. It is a snow day and there is no school, and he does not want to ride with his sister to daycare. This is not part of his routine, after all. After trying to coax him for 20 minutes, I gave up. Now we are waiting for my husband to come home from work so he can transport our daughter.

“Stop reading that book! Please, stop reading that book! Audrey’s not going!” he screams. Over and over and over.

“Mommy, that yelling scares me,” my daughter says.

Her words slice deep. I swallow hard. I try to read louder. This is a power struggle. I am following advice and not engaging in the struggle. But my son screams on, and I can’t shield my daughter, either. Why? Why, God?

Thursday, 3:30 a.m.
Our son has awoken and my husband has gone to see what the problem is. He’s taking a long time so I go downstairs, too. Husband is rummaging in the dryer. Son has declared he wants different pajamas. It’s another power struggle we don’t want to engage, especially at this hour. So we look for the jammies at 3:30 a.m. Mercifully we find them. We go to bed, bleary yet stunned. These are our lives?

Friday, 9:30 a.m.
Still sick. I make doctor’s appointments and announce them to both kids. Son states he wants to go to the library after the doctor’s office. Since our schedule doesn’t allow that, I offer to take him to the library before the doctor’s, or later. In the afternoon. Son refuses to accept this. Cue the power struggle, again. Two hours this time.

I stay calm. I do not yell. I have yelled before. Lots of times. Now, I yell in reverse. My voice gets quieter and quieter the closer I come to losing it. I am doing the right things, or what I am told are the right things. I am not engaging. I am preparing him in advance of transitions. I am offering choices. I am accommodating his challenges wherever possible, even at the expense of others, others I love, too.

And I feel like one of the rats in Hamelin, following the Pied Piper of autism.

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Open water – life without lanes *

Saturday morning, and I’m plunging my arms against the chopping water of West Grand Traverse Bay. Stroke, stroke, stroke, stroke, breathe, on the right, because the waves are rolling in from the left. Trying to progress toward the orange buoy ahead, the one being buffeted about by these same waves, cresting just shy of a whitecap.

Stroke, stroke, stroke, stroke breathe, on the right again. The orange buoy marks the midway point, when I turn and this relentless current becomes my friend, pushing me back to the beach now almost half a mile behind me.

Almost. Maybe 100, 200 yards to the buoy? Stroke, stroke, stroke, stroke, breathe, lifting my head up this time, switching to breast stroke, to get a better visual of my floating target.

No progress. At least is doesn’t feel like it. Treading water, I lift my goggles, fogged because the water’s warmer than the 67-degree air. I’ve drifted, no surprise, off to the right. I’ll have to alternate to stay in a straight line.

So. Stroke, stroke, stroke, left. Stroke, stroke, stroke, right. OK. I’m doing all right. I’m encouraged to see another swimmer now, someone else stabbing their arms and legs into the gray water in perpetual motion, because, after all, that’s what you do in an open water swim. Stroke stroke, stroke, lef–

The wave smacks my face, filling my mouth with water. Instinctively I close it, rolling over to the relative shelter of the right. Gagging, I try to breathe air through my nose while water sloshes in my lungs. Coughing, I swing my legs vertical, treading water. My legs churn below, but I’m now a bobber in these waves, vulnerable to going under. Still coughing. I abandon treading and float on my back. Just keep swimming, Dory said. But first you’ve got to just keep breathing.

It works. Thirty seconds of floating and I’m breathing evenly again. But rolling over to swim again, I’m tired. I’ve lost the comforting sight of my comrade in the waves. Still, I just keep swimming.

Stroke, stroke, stroke, right. Stroke, stroke, stroke, THIS.

A timely appearance/cropped from Jan-Michael Stump original in Record-Eagle

Off to, yes, the left, over Leelanau County. And there in the water, I feel like Noah. It’s not just been a rough half-mile. It’s been a rough week, this first week of school, with e-mails and phone calls over my son’s behavior, as turbulent as the bay right now. It’s been a rough summer, as I wrote below.

But I also recall re-reading an entry from my journal dated March 5, almost exactly six months ago, when the waters of life were glassy-smooth. “Doing great. A+ school conference,” I wrote about my son.”It’s a good place now.”

I look at the rainbow again. Two hundred yards til the good place, I coach myself. Almost there.

I just have to keep swimming. And I do.

Bay, slain.

* Thanks to Carol South for the “life without lanes” analogy.
* Slick “S” courtesy of Daily Drop Cap.