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Two of Us
We’re still here, and I know it’s been a while. The last two months have been long. We’ve had a wicked winter. I think it’s been the coldest since we’ve moved here–almost 14 years ago. Between January and February, we’ve had 5 snow days and one late start. The stomach flu ran its course through our family in mid-February, starting with Steve, and hitting every single member of our family every 48 hours like clockwork. Then, after a short reprieve, Steve, W, and I came down with a head cold that lasted for a week and a half. We took all the COVID tests. Nope, no COVID. And then there’s…
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J is Struggling
We have a problem with masks. No, not for the political reasons that everyone else seems to have about masks. We have a problem with masks because for the last bazillion months of the pandemic, masks, for the most part, have kept people from getting sick. Not just from COVID but from colds and other respiratory issues. Which means people aren’t coughing. And that’s a really bad thing for J. For 2020 and most of 2021, you’d go to the grocery store and it would be silent. Church was silent. Classrooms? Silent. Almost every public place without a hack or cleared throat. To be honest, I didn’t notice. At all.…
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Determined as the Universe
2021 sure put up a fight before disappearing into history. In fact it was downright argumentative. Pugnacious. Scrappy. It felt like we were battling the 10 plagues of Egypt trying to get my mom home after she came to visit over Christmas. Bitter cold and blizzard winds cancelled my mom’s flight out on December 27. The soonest we could rebook her Denver flight was for New Year’s Eve. The day before her rescheduled flight–out of nowhere–wildfires on the outskirts of Denver ravaged nearby Louisville and Superior with 115 mph winds and an oncoming winter storm. We watched American and United cancel flight after flight to destinations all over the US…
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A Glossary of Agencies and Services
Thursday of last week we met J’s case manager at Developmental Disabilities (Human Services, state of North Dakota) for his yearly check in. And as we chatted, I asked his case manager all the questions—again. It’s been about 18 years since I’ve been first introduced to all of the options and programming for individuals with special needs, and it feels like it was much simpler. Most of the programming J received was through the public school system. He was shuffled into early intervention education even before his preschool years, and he’s rode the public school programming all the way up until graduation. After graduation, we’re learning it all over again.…
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The Post High School IEP
A few weeks ago we sat down with J’s new team to discuss his IEP. I had thought long and hard for weeks what we wanted J’s new goals to look like, but I couldn’t come up with anything. For the last 12 years J’s IEP has been some iteration of getting J to stay and focus in a classroom or how to accommodate class and homework assignments. But now J’s classroom no longer looks like an academic one. And to be honest, I’m still learning myself what his new school situation looks like, and to be honest, I’m kind of IEPed out. I’m all out of ideas. We were…
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How to help
In early July, just a day or two after we had gotten back to Fargo from a visit with my mom, J and I were at the 4-way stop on the corner of 25th Ave N and 10th Street N when a car suddenly rear-ended us–twice. Then, just as I looked up in the rearview mirror, the silver sedan gunned it in reverse about half a block. I got out of the car (which probably wasn’t the smartest idea) and started motioning and yelling at the driver to pull over so we could exchange information. I knew in my gut she wasn’t coming back, so I memorized the crap out…
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Skittles and CVS
One of the things we’re working on with J is improving his phone skills. Don’t get me wrong, J has no problem navigating his smartphone. He listens to music and plays games on his phone all the time (for hours on end if we would let him), but using his phone to actually communicate with others–we’re still working on that. Part of the issue is that phone communication is a new medium or “genre” for him. He was never formally taught in school how to send a text, how to speak on the phone, not in the way he was explicitly taught to write sentences and paragraphs with topic sentences…
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With all the people
Saturday was the Fargo Marathon. For weeks I had gone back and forth whether or not I should sign up J for the 10K. J’s been wanting to do the 10K forever, well, at least since the Fargo Marathon events were cancelled in 2020. Speaking of the 2020 Fargo Marathon… If you were around reading this blog last year at this time, you’ll remember that I was struggling to decide if I was going to go ahead and run my first marathon scheduled for late August of last year. I had been training since January, and was supposed to run it in May 2020. Then, of course, it was cancelled,…
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Little paper trails
I began my personal paper trail a few months shy of 16 years old. I got my first passport in June of 1996, and on August 5 of that year (I still have the original immigration visa stamp in that passport) my mom, sister, and I moved to the States to join my dad in Nebraska where he had started his new job a few months earlier. I remember sitting in the Coutts/Sweetgrass Border Patrol Building which straddles the border of Alberta and Montana where Customs officers scoured over the paperwork my mom had filled out for me and my sister. The room was small. Wood paneling. There was a…
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New Stories
Confession: I don’t feel qualified to do this kind of parenting. I don’t know if I’ve ever been really qualified to do any kind of parenting–but this phase in life is just strange. I’m not sure how to help J navigate the “neurotypical emerging adult world” because “neurotypical adult world” isn’t made for people who don’t fit the “neurotypical world.” I’ve also been around long enough to know that the “neurotypical world” is kind of a sham: you graduate high school, you go to university, you get a job, you get married, you buy a house, you have kids, you retire. What “neurotypical world” doesn’t tell you is that you…
