View From the Therapy Waiting Room: When We Do Say “Enough”?

Autism Therapy Room
Autism Therapy Room

Last week, we talked about time. As I tell Jonah, my oldest who approaches his day with ADHD randomness, time is our most precious commodity. I’m always looking at ways to consolidate the amount of time that I spend doing “dumb” Ian chores, while valuing the “good” time that I spend with him. I want to spend less time trading phone calls with therapists, and more time taking him on trips to New York City. 

Today, I’m going to talk about money. 

Ian goes to a public school from 8 to 3, seven hours a day. People think of their public schools as free, but they aren’t really. To live in our school district, there’s a hefty price tag on a home and local taxes. If we didn’t worry about disability services, we could move to a place like Florida with cheaper homes and taxes, but there would be really bad special education schools and meagre adult services. So, living in this town and state is an indirect disability expense.

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14 thoughts on “View From the Therapy Waiting Room: When We Do Say “Enough”?

  1. Again, you are really good at this kind of article. Lots of food for thought and my mind is now spinning with thoughts.

    “Guilt is the dark shadow of parenting. Most parents have a regret or two. ”

    I am pretty good at not having regrets about my parenting, but you made me try to think about it (which isn’t all bad, but is a little bit bad :-)).

    But, I have made it my mission to tell parents (usually mothers I know) that they are wrong about regrets.

    I frequently tell my own mom that she shouldn’t have any regrets (most recently, about having spent time learning English in the year before moving to the US and letting her siblings take care of us and about not having been able to give me advice about how to address a letter to my professor — mind you, my dad was a professor, so it wasn’t like I was lacking in advice). I have friends who still revisit the reading instruction their 30 year old child got in 3rd grad, ones who revisit the year when they left our city and moved to Arizona, , . . . And, me (the silliest), when I had the foolish regret that if I’d chosen another college, I could have brought legacy preference to my kids (unlike the one I & spouse went to, which does not privilege legacies). Fortunately this one never gets said out loud to anyone in person.

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    1. I have a really interesting perspective on this – although coming from a very different university environment (where cost wasn’t a huge barrier).

      Neither of my parents went to uni – both were working class – working their way up the economic ladder into middle class throughout my childhood.

      My dad, in particular, always regretted that he’d never had the chance to go to university (left school at 18 to take up a plastering apprenticeship).
      And strongly encouraged us to do well at school, and to aim for university.

      That was the ‘right’ choice for me. I loved to learn, and had a talent for exams. Although was never outstanding, and had no ambitions to follow an academic career: a BA (History and Archaeology) followed by a Masters in Library and Information Science was exactly the right career choice for me, and I’ve built a career in metadata creation and management and IT systems operations.

      However, it was the ‘wrong’ choice for both my brother and my sister.

      My sister went to uni for 2 enormously enjoyable social years (without passing a single paper) – before she went on to build a career in theatre/arts admin. Her superb social skills and networking capacity, along with her capable problem-solving talents – means that she’s always in demand, and has a really strong reputation in her field. Not having a degree has never been a barrier in any way.

      My brother is the opposite as far as social skills goes. He’s highly introverted, and his initial pathway into engineering, and then computer science at university, didn’t go well. He flailed around for a few years: renting videos at the local outlet – which forced him to develop customer service skills, and being a postie (postal delivery), which made him determined to find a job that didn’t keep him on his feet all day! Finally he found his niche in IT – but the very practical hands-on side of things – working initially for a telecommunications company, and then moving into IT support in the banking sector. Again, he’s highly valued for what he does – and has pursued short-term targeted certifications – but neither needs nor wants a degree.

      From the perspective of 30+ years later – the pressure (subtle though it was) from my Dad – that only a university degree was a worthwhile career – meant that both my sister and brother wasted quite a few years, before they found the (non-degree) career pathways that worked for them.

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  2. We always ponder the ‘road not travelled’ – and parental guilt (especially Mum guilt) – is a major and real thing.
    However, absent time-travel, none of us have a chance for a do-over – and all you can do is change things going forward.

    And there are downsides, too, to some of the options. I have a friend with kids on the spectrum, and she moved back from the hugely intensive therapy route, because it was massively increasing the anxiety levels of her boys. The hyper-scheduling and pressure was making them (and therefore the whole family) utterly miserable. Moving at a more gentle pace (and, in her case, home-schooling for several years) has enabled a lot of the socialization and interpersonal skills to be mastered – without making their lives a total misery. [This is not a route I could have taken – but it worked for her family]

    Ian has (it’s very clear from your blog) a hugely supportive family, and multiple options for his future still on the table. He’s making strides in the socialization areas – perhaps because he’s now ‘ready’ to do so.

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  3. I’m not on Twitter but let me second what your friend said about the professor who refused to teach Ian: there is no way that’s allowed (in addition to being outrageous and awful). Our disability resource center sends us information on what kinds of accommodations we are required to provide – which, for me, in the past, has involved enormous amounts of work to accommodate deaf students and blind students, as well as tons of easier cases. We once had a mandatory all-faculty meeting, apparently required by university counsel, when someone failed to accommodate a pregnant student. Accommodations are not optional. Of course there are professors who don’t do a good job with them, out of laziness or ignorance, but an outright objection should be carefully documented and you should present it to the chair, then the dean, then the president or board. And then go to the press and/or sue if you feel like it.

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      1. Thanks. It was resolved by withdrawing him from the class and putting him in an online class. Tomorrow I’m going to go full mamma bear. It will be ugly.

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    1. I talked with the Dean of Students and the Head of Student Accommodations. Lots of denials and finger pointing (not at Ian, but at others). I was assured that it would never happen again. I assured them that if anything ever happened like this again, my first call was going to be to my lawyer, the second one would be to the NYT.

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      1. “I assured them that if anything ever happened like this again, my first call was going to be to my lawyer, the second one would be to the NYT.”

        Bravo! A call to the chair of the Dept of Computer Science would also be good. At my university, the issue of professor behavior is an academic issue, and the professor would be talked to by the chair and/or dean.

        Has Ian been put back into an in-person class?

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  4. Laura wrote:

    “And kids, even old ones like Ian, keep improving. At age 20, he made a massive job in social skills just in the past six months, which has opened up all new possibilities for him for the future. So, don’t give up.”

    Yes!

    A lot of us adult folk are still trying to put our social lives back after COVID.

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