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Concussions, autism, and processing
Thursday morning threatened rain. Not just a light drizzle, but a big Midwest rain. The cross country team runs no matter what the weather is and so as we ran out the door that morning for practice, I pulled J’s windbreaker out of the closet along with a baseball cap. I’ve been trying to get J to be okay with running in the rain. He absolutely hates running in the rain. In the rain he runs like the walking dead, arms locked by his side, his shoulders up to his ears. He has sensory issues with wet clothes. He hates rain in his eyes. I thought the wind breaker might keep him drier…
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W’s turn
Most of the time my life is consumed with J. I go to bed thinking about J. I wake up thinking about J. In the throws of summer most daytime hours are spent with J. J and I get up and run, we work on math, we work on reading. We talk about managing anxiety outside of meltdowns, I coach him through the anxiety meltdowns as they happen. I’m his one-on-one tutor, psychologist, and coach. Almost every waking minute. All while W floats in the periphery, taking care of herself, spending time reading in her room or outside with the neighbor kids. Sometimes she’s tinkering with Legos, sometimes she writes stories. Since she is so independent,…
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The transition
Two weeks and some change, J and W will be headed back to school and we’ll be doing that dance again. When J was younger (and I was younger) I would anticipate the coming school year to be “that year.” I would ridiculously hope/expect that in the new school year, miracles would happen. Even though I knew then as I do now that autism has no cure, some part of my heart hoped that this would be the year that J would be “cured” in some way. This would be the year where the speech delays would disappear, his behaviors would disappear, his sensory issues would disappear, and then we could really, really work on…
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Running with bean bags
It amazes me sometimes the things that J can do and the things he can’t do. It amazes me that these strengths and deficits permeate into every aspect of his life–socially, mentally, emotionally, and yes physically. Today’s post is about some of the physical deficits J struggles with. Throughout J’s life, J has had physical struggles at fundamental developmental levels and stages. He was a great crawler and subsequent furniture cruiser, but he didn’t have enough guts to let go of the furniture and take steps on his own until he was 14 months old (most kids start walking at 12 months). He was a great breast feeder, bottle feeder,…
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We’re all in this together
This post is picture heavy and prose light. Steve and I got back from Europe Sunday night and I’m refreshed and exhausted and ready and not ready to get back to life as we know it here in Fargo. I’ve got emails, work, laundry, and more to catch up on. I’ve got to reorient myself with the kids’ schedules, get the kids back into the chore routine. Find that balance again. After all, school starts again in a month. (Yikes!) I think the best part of this trip was the realization that there are hundreds, thousands, millions of people on this planet who live in many ways the life you’re living…
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Making life hell on purpose
It takes 11 hours or so to drive from Wichita, Kansas to Fargo, North Dakota. I feel pretty lucky. My kids are great travelers—long car trips are never a problem for us. In fact, J really loves them. He memorizes every exit sign for the entire stretch of 1-29 until we hit Iowa/Nebraska. Then he knows every exit number from Topeka to Wichita. It’s really incredible—I don’t know how he does it. I guess it’s sort of his autism party trick. We had just passed Council Bluffs, Iowa and still had six hours to go so I decided it was time to take the plunge. J and I had a…
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The injury
We’ve been home a week now and we’re still dealing with the aftermath of our vacation, trying to get back into routine, unpack suitcases, keep ahead of the laundry race, and getting the kids back into summer running and routine again. Our first day back I wasn’t sure how that was going to go with J. Because Friday, the morning of our last day in Florida, and six hours or so before our flight to Wichita (to finish up the trip with a quick two day visit with my sister whom I miss dearly since she now lives in Saudi Arabia) J stumbles out of the bathroom and says. “I…
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iPhone notes
I have 267 notes currently on my iPhone, including an extensive amount of memos, lists, and observations. There’s random lines of poetry I’m tinkering around with, story ideas, and J notes. Lots of J notes. Notes to track J’s phobias, notes of ideas as to how to approach J’s phobias, new approaches to try with J, my observations of J. This week’s iPhone notes included this little tidbit of new J behavior. We’ve been on vacation for the last week and a half, and we’ve seen the full gamut of behaviors. This one happened at my parent’s house while the kids were trapped inside for most of the time…
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Where we are now
A few weeks ago, J was getting his vitals measured by the nurse at Dr. R’s office and she announced: “He’s 5′ 4 1/2.” What? I thought. That can’t be right. I’m 5′ 4 1/2″. And then I realized that the nurse had let J keep his shoes on for his height measurement, because J was wearing his AFOs (ankle foot orthosis) and it’s always a hassle to take the AFOs and shoes off and then put them all back on again for a 60 second measurement. But still, J’s shoes plus AFOs probably add only an inch MAX to his height. For the rest of the day I couldn’t help but realize…
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Boys and men
I’ll never forget that 20 week ultrasound (which was really at 18 weeks based on appointment scheduling). The ultrasound tech pointed to the screen, between what I was assuming was J’s legs and said, “See that right there (referring to J’s boy parts). It’s a boy!” Steve was ecstatic. I was terrified. It was overwhelming thinking about raising another human being and I knew nothing about boys. NOTHING. J’s baby shower was all blankets, diapers, onesies, and soothers, blue and sports. The perfect inauguration for a perfectly happy and healthy baby boy. And for a long time, for almost two years, J was exactly the baby boy we both expected him to be.…
