On Saturday, the nurse jabbed Ian’s right arm again and again, but his blood failed to gush into the testing tube.
We were at Quest Diagnostics for another blood test to determine if he had an adequate level of epilepsy medicine in his bloodstream. Too much medicine trashes his liver. And if he was failing to take his medicine again, we would know that, too.
The nurse said, “this isn’t working. He’s too dehydrated. He has to drink a lot of water and come back another day.”
Ian concentrates so hard on his computer stuff that he forgets to eat and drink. Meals come at regular times at school and at home, but not water intake. So he forgets.
I promptly drove him to the bagel store for a liter of Gatorade and then came up with some long term hydrating solutions for home and school. I made an appointment to retake the test next Saturday.
It’s lots of work managing a young adult with autism and epilepsy, but going forward, I’m going to get paid for this time. After two years of filling out paperwork, Ian is finally “in the system,” which means that I’ll get paid a small stipend for all this work.
It wasn’t easy getting to this spot. Sometimes I worked 60 hours a week on getting educated about paperwork and filling out paperwork, along with all the legal matters with our school district to get Ian properly educated. Finishing all that work and getting paid for his on-going support is a major milestone in my life.
So, I’m making lots of changes in my personal and professional lives.
I’m quitting freelance writing. No more pitching articles to editors and figuring out to make my words fit their magazine styles. Done with that.
I will keep writing in other ways. Opinion pieces will happen. My newsletter will happen and maybe expand to twice a week. I’m working on a book proposal. I’ll keep this blog, but won’t publicize it, so there will be no new readers. For my long time friends, I’ll have links to the newsletter and personal updates and pictures.
I’m running for our town’s Board of Education this November. I have a ton of paperwork to fill out by Friday. I’m having a great time figuring out how to leverage my writing skills and social media knowledge to run my own campaign. I’ll tell you more about this in the future.
Because I’m going to have a lot of evening events, we’re totally rethinking our family routines. Who’s going to cook dinner? Who’s going to drive Ian to all his different therapy appointments? All that still needs to be figured out.
I like change. And I just threw a cherry bomb into my life. So. Much. Fun.
10 thoughts on “Some Personal News”
Those mostly sound like very positive changes. I feel for Ian. My eldest has had kidney stones and tends to do the same thing although it may not be quite as extreme (when he’s making art, he doesn’t drink water. Or sleep…the lack of sleep is kind of nuts and impacts him at school.)
Glad for the supports you’ve found for Ian, including the support for yourself to support him.
Your blog has been a story of reinvention (I think, most of our stories would be, even the people who seem like they are on a straight and narrow path) and I’m excited for you for the new paths. My reinventions are inward, mostly, but I do very much also enjoy new projects and I’m guessing you’ll love this new one in a more public sphere.
I am annoyed by that NYTimes article by Kane et al because 1) they say the learning gap effects occurred across all SES levels (in an individual district) and then shift to showing data by race (which is not SES level) and 2) the eyeball look at the data (which might not reflect statistical significance) does not show that white & black & hispanic students were equally affected — the data points for white students are above the diagonal in the graph, by eye, which would mean that they experienced less learning loss than the average student in their district.
The statistics might show that my eyeball is failing and that there was no significant difference between students in a district based on race (i.e. if the average learning loss in a district was 2 years, that all students experienced that loss). But the lack of significance does not mean that one can conclude that there is no effect of race or SES.
(Why does this matter? partly because it matters whether the decisions and resources of districts were an important factor, though, district level effects can also reflect district level effects of the pandemic, independent of district decision making and resources, or in combination with it)
Kane is a top rate researcher, but you could b right. I’ll put my own eyeballs on this data in an hour.
Yes, I know, and I presume that he’s doing the statistics properly. But, the shift from SES to race is inexcusable and makes me wonder what the data really looks like.
Also, I’ll go a bit further and say something that someone else pointed out to me, which is the extent to which the “top researchers” at the “top” universities (Stanford/Harvard) can play a bit fast and loose with the data to make their bigger point, because people will take the names as a stand in for the analysis, especially when the analysis agrees with their policy goal/ideology. The NYTimes isn’t going to as easily place an op-ed from North Idaho State.
in this case, the bigger point is the argument for potential and longer interventions (and money, presumably) because it’s not just the kids who were graduating during the pandemic who will feel its effects. We might need decade+ interventions and I’m not disagreeing with that goal, but I emotionally and psychologically can’t stand a lack of fidelity to the numbers. I think folks do this kind of eliding on all sides of these big public policy questions.
Also, I haven’t looked at the report, only the NYTimes piece.
Excellent summary of the Hanushek paper in your link! It’s a big deal that this latest summary/meta analysis shows a positive effect of funding (and, hopefully, will undermine his testimony). And, an example of the other point I’m making, that ideological concerns or alignment (Hanushek clearly is on one side of the funding debate + and both testifies and wrote on the topic) can influence the interpretation of the numbers (and, the Hoover institute is generally seen as having an ideological point of view, but its house at Stanford sometimes works to avoid that perception).
I am pleased that the new summary didn’t get lost or otherwise not make it into the published work on the subject. I would really like to hear from his collaborator, Danielle Handel, who, I’ll hope, has a long follow-up career on how the increased funding should be spent. That’s what you do next, when an intervention finds a positive effect in science, but not always. Sometimes, though, it’s just random variation, so Hanushek’s argument that there isn’t “consistent” variation is a poor response. 14/18 studies showed a positive effect on graduation rates. Would it have to be 18/18 before he would agree that it was a consistent effect? A 100% decrease in death rates (i.e. no one dies if they received the treatment) is not the appropriate standard for a medical intervention, for example.
The reporter (Matt Barnum, Spencer Fellow) did a significant job of parsing that paper; the abstract meticulously avoids describing the bottom line conclusions that Barnum highlights in the Vox & Chalkbeat work.
From the abstract of the Handel & Hanushek report, “More recent work has re-opened the fundamental resource achievement relationship with more compelling analyses that offer stronger identification of resource impacts. A thorough review of existing studies, however, leads to conclusions similar to those in the historical work: how resources are used is key to the outcomes.”
which is pretty different from Barnum’s summary in the Vox article:
“Eric Hanushek, a leading education researcher, has spent his career arguing that spending more money on schools probably won’t make them better.
His latest research, though, suggests the opposite.”
All my buttons are pressed (thanks for the article link and perusing this literature for sharing, though).
Best of luck for elections and new ventures.
Thanks! It’s all super fun. Probably it’s my Irish urban-machine politics-honest graft heritage kicking in.
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