Growing Up When the World Is Stalled (Newsletter)

Excerpt from the Newsletter, which is here. Subscribe here.

In the midst of a world-wide pandemic with growing infection rates and schools that open and shut like the eyes of a flirtatious girl, I am trying my damndest to get my kids through life. 

My college kid is presently lounging across our sofa working on an assignment for his Western Civ class. When we visited him for brunch last Sunday, the deserted and depressing campus set off parental alarm bells. We were concerned that he was too isolated in his semi-occupied off-campus dorm, so we made him come home for a week for a sanity-check. 

The visit also set off consumer alarm bells. We are spending loads of money for laptop classes. We’re paying for a library that is shut. We are paying for a student center that is shut. We are even paying for printer paper in computer labs, which are also shut. It’s like we are paying for two dozen eggs and only getting five. Perhaps it was time for a gap semester. 

After a weekend of debate, we decided to keep him at college even though he is not getting the full experience, because he needs to move on with his life. We don’t want him to delay the next step of his life — getting a first job and finding his place in the world — while we wait for higher education to get its act together. 

My high school kid, the guy with high functioning autism, is in an even more precarious spot. He’s a high school senior. Right now, the typical kid in my town is taking her SATs, writing the college essay, taking virtual tours of campuses, and chasing teachers for recommendations. What happens to kids who are not going to a four-year college? Until this year, I had no idea. I know how to get a kid into college. I have no idea what to do with a kid who isn’t going down that route. 

Part of our problem is that Ian is very smart, despite his disabilities. He took his SATs last week, and I’m sure that he did fine at least on the math part. He’s getting all A’s in his Trig class right now. But, at the end of the day, he still has autism, which means there is absolutely no way that he could survive in the state of nature that is a college dorm.

Weirdly enough, if he had an intellectual disability, there would be paths for him. Now, none of them are fantastic, but they do exist. One popular route for kids with intellectual disabilities is to stay in the school district until 21, and have the district teach them life-skills, like doing dishes and making a ham sandwich, and work skills, like stacking shampoo in CVS or pushing shopping carts at the supermarket. Ian is not going to fit in with this group. 

He could get a certificate in computer programming at the local community college, but I am not sure if he has the social skills at this moment to manage those classes without support. Without the protection of an IEP, community colleges tend to boot out kids like mine. 

To get some guidance, we will go to Yale for a full evaluation of Ian. We’ll sit behind a two-way mirror watching their psychologists and neurologists of the Child Study Team measure his IQ and social skills. When they evaluated him four years ago, they provided us with quantitative data that broke him out of his special education jail, where he was learning nothing. This time, we are hoping that they can point us towards post-high school programs that might make sense for him.

Setting up this evaluation was a major hassle. It took days to get pre-approval from my health insurance company, so they’ll cover part of the $6K price tag. I am coordinating the tests with the school district, which is in the process of doing their own evaluations; we can’t have him take the same test twice. All this is complicated by the fact that a teacher at his school tested positive for COVID, which triggered a shutdown of the entire school district. He’s back at home until next week. 

So, in November, we will drive to New Haven for the two-day exam. Then, there will be several zoom meetings with the school district as they complete their own exam of Ian. After that, we will visit programs to find something that will work for Ian next year. Hopefully, we’ll find something that isn’t in a basement of a dirty building with sad kids, who are spinning and hand flapping by themselves. (It’s disgusting what happens to disabled people in our society. Everybody should see those places.) 

The whole process of finding a place for Ian would be horrible no matter what. It’s just now, everything is harder. It’s hard to visit programs and schedule meetings and arrange for evaluations. It’s double the misery.

My kids are growing in the midst of devastation like flowers in the cracks of a city sidewalk. Their lives cannot pause, because the rest of the world is on hold. In my house, teens are becoming adults. In other homes, babies are getting first teeth and learning to walk, tweens are getting first crushes. Their developing brains don’t care that the government is broken. They are growing up, despite the failure of adults to manage this disease. Hopefully, at some point, they will have the same opportunities and rich experiences that we enjoyed at their ages. 

19 thoughts on “Growing Up When the World Is Stalled (Newsletter)

  1. Interesting that the SAT was available. In my neck of the woods the SATs have been cancelled since March (not sure about sites in the eastern part of the state). Kiddo is a junior, so it is not yet urgent, but the students I’m hearing about have taken the test in other states (Oregon, Idaho). Seeing so many disparities — no one flew in their private jet, but, second homes have definitely played a role.

    And, there is the state disparity, too.

    We heard recently that the U Wash reader of applications will not have SAT scores available (they are no longer required). So, admissions decisions will be made without scores, even if they are available for an individual student (and, only used in marginal cases). Personally, for my kid, I don’t think it makes a significant difference. His SAT scores would likely match his grades and can’t be at a level that would significantly improve his outcome (probably). But, I can see that others will have different considerations.


  2. I’ve been intrigued to see the development of college programs for students with autism as well as workplaces finding roles for autistic people. I look forward to hearing what you learn about the options.


    1. Honestly, I think most of those news articles and reports about autism-friendly workplaces are bullshit. There are a dozen programs in the entire country, and they employ ten people or less. Most of the research on outcomes for people with autism are pretty horrific. Most people with autism, even high functioning ones like Ian, graduate from high school and spend the rest of their lives on the sofa at home. No school, no job, no life, no government support.


      1. Laura wrote, “Honestly, I think most of those news articles and reports about autism-friendly workplaces are bullshit. There are a dozen programs in the entire country, and they employ ten people or less.”

        Something I’ve run into a few times is that middle-class parents of adult children with brain injuries create jobs within their businesses that are tailor-made to fit the adult child’s capabilities.

        If you can’t place Ian in any other way, I would suggest that you figure out how to use him in your book business. You could encourage him to do a technical course or two a year at the community college at the same time. Some possible ideas for stuff he could do in your business:

        –packing and labeling shipments
        –the IT side of the business
        –cataloging, organizing and moving the books for you
        –maintenance work in the “store” (dusting, vacuuming, etc.)

        It might be possible for you to eventually find a similar job for Ian. There are a lot of small business people who don’t necessarily like the finicky side of the business, but would appreciate reliable help.

        Oh yeah, and take all your vitamins.


      2. Even just a 10-hour a week gig could build his skills and confidence and provide social experience and pocket money.


      3. Laura said, “I really do hope that there are more options for him than working for me. But I suppose, it is always a fall back plan.”

        It is.

        Here’s another option, which is potentially more annoying and more work for you but also potentially more rewarding for Ian: appoint yourself Ian’s agent/dispatcher and get him gigs. There are a lot of small businesses that probably need a little help from time to time in areas where he has skills or could learn to have skills. Bonus points if it’s a small business where he has an interest (hobby store, music store, computer/iphone repair store, etc).

        Of course, the pandemic is not a great time for this. But there’s no rush.


      4. All those jobs suck though. No benefits. Minimum wage. Few hours. I would prefer that he worked in an Amazon warehouse, where he would have benefits and a livable wage. There is no way that I want to spend the rest of my life organizing a dozen random low-paying jobs. I will fight people before I allow that to happen myself.


      5. Laura said, “All those jobs suck though. No benefits. Minimum wage. Few hours. I would prefer that he worked in an Amazon warehouse, where he would have benefits and a livable wage. There is no way that I want to spend the rest of my life organizing a dozen random low-paying jobs. I will fight people before I allow that to happen myself.”

        If he is contented with Amazon, that would be great. However, I know you felt that a grocery store job wouldn’t be right for him, and there’s the potential that Amazon would be like that, but with much poorer working conditions.

        At least during the pandemic, Amazon has had a crazy turnover rate among frontline workers:

        “Amazon’s turnover rate among front-line workers was at least double the industry average during the initial months of the coronavirus pandemic, reinforcing the view among some critics that the Seattle commerce giant churns through workers.”

        “Amazon’s front-line turnover rate appears to be around 100% for that span, if not higher, a Seattle Times analysis found. That would be at least double and possibly triple the rates for the industries in which Amazon’s warehousing and retail operations are included. From March through August, the U.S. retail industry had a turnover rate of 38.1%, according to Bureau of Labor and Statistics data, seasonally adjusted. That rate for the transportation, warehousing and utilities industry was 33%.”

        If it works for Ian long-term, great, but I wouldn’t bet on that horse.


    2. I think you are right that most of the articles I read are branding and advertising and support only a few students. And access is selective and based on who you know and how connected your advocates are. So, not a systematic solution, but maybe a personal one.


  3. I don’t mean to minimize Laura’s struggles, but at Jonah’s age, my Uncle Wally was visiting Iwo Jima, and at Ian’s age, my Uncle Larry was spending the winter at Chosin Reservoir. They survived and got on with their lives. At a less stressful, but possibly more relevant, level, several of the senior associates in our office graduated into the middle of the Great Recession, and found their careers stalled while they spent a few years in non-career path jobs, before finally attaining biglaw associatehood (the pinnacle of human existence). In the end, they landed on their feet and got on with their lives. So there’s no reason for excessive anxiety.


  4. At my son’s age, my father was living in a free hostel with not enough food to eat (and trying to fill his stomach with water) while completing preparation for an engineering degree and studying by candle light. So, we all understand that trying to figure out where to take the SAT is not the biggest problem in the world.

    On the other hand, my son didn’t take it too well when I suggested that experience as a comparison. What they want from us is to know that we are doing what we can to keep the world working for them.


    1. bj said, “On the other hand, my son didn’t take it too well when I suggested that experience as a comparison.”

      My big kids have gotten more than a few “walked to school uphill in the snow–both ways” stories from me. I can’t say that it makes much of an impression.


      1. I would never tell my daughter how hard things were in the past (especially since they weren’t, particularly, for me). But I also keep a sense of proportion about her problems, even when she does not.


  5. I’m a full time lurker but I do have two kids on the spectrum that are currently studying at our local college. It’s tied to a medical school so it has a decent science department and a hugely growing computer school.

    Thankfully that means that my kids can live at home while studying sciences. Fortunately, the school is very accepting of twice exceptional students. The second kid has some major learning issues even though he easily scored 33 on the ACT. He gets our requested accommodations for testing due to his documented disabilities. (A private, quiet test area and time and half for testing.) If we discover that he needs other accommodations, it is a quick meeting with the school’s special services and they get it approved through the state and send to the professors.

    The other is probably the most social autistic you will ever meet but lacks some executive skills that would allow him to live in a dorm. He should be ready but he time grad school is in the picture.

    I know that may sound like a far reaching plan for your son but I thought the same thing when the first one wanted to go to college. I have been pleasantly proven wrong by my kids. It wasn’t easy and I spend way more time involved in their work than I should be…but they are doing way more than I ever thought possible.


    1. How delightful. I love hearing stories of how we learn that our kids are doing way more than we thought was possible.


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