From the newsletter.
My grandmother lived in her own apartment long into her 80s. Despite a few bouts with cancer, she managed independent living okay. At the same time, she wasn’t the quickest on the draw all the time. It would take her a second too long to answer questions, and sometimes she might get a little confused. Grandma moved slowly and gingerly, though never used a cane. I suppose she was simply generic old.
To push my grandmother out of the comfort zone of her apartment, my aunt would periodically plop her on a weeklong cruise with her 90-year old sister, my grand-aunt Edna. After grandma’s boat departed from the New York City harbor, our families worried that Grandma wouldn’t be able to handle this new environment without the support of her daughters. Would she figure out how to reserve a table for dinner? Would she be able to navigate the boat? Would she take advantage of the shows and other events on the boat?
At the end of the first cruise, ten day later, Irene and Edna walked down the plank from the ship dragging their wheeled suitcases behind them. My aunt told me that they were so deeply engrossed in their conversation, they barely paused their conversation to say “hi” to my aunt and talked on the whole drive home. The ladies had, indeed, figured out the menus and locations of the dining rooms and pools. They had caught every show and lost money at the slot machines. They had a marvelous time.
Grandma came off that boat looking ten years younger. Why? She was stimulated and challenged. It was a giant marathon for her brain, and her brain loved it. Her old life involved too much solitary time watching 1940’s musicals on her video cassettes. During the cruise, she had a lively conversation partner and hundreds of new activities. From that anecdote, I decided that brains like to be challenged and stimulated, and that a sleepy brain can be awoken.
I leaned into that lesson many years later, when my two-year old wasn’t hitting his milestones for speech. I talked to Ian all day long. When he seemed too comfortable at home and cried at a loud parade, I took him along on every trip to the supermarket and to the mall. We went to the beach, museums, a new place every weekend. I didn’t let Ian retreat into his brain or the computer. I didn’t have much help back then; specialists were too expensive and we didn’t have a diagnosis of autism to qualify for free help from the state or the school district.
Later, after he was formally diagnosed with autism, I read about the notion of neuroplasticity — neural pathways in the brain can change through growth and excerise. An atypical brain can be rewired, if it’s forced to do mental pushups for hours and hours. In the autism world, parents now know that hours and hours of ABA therapy at an early age makes a difference. Because Ian was diagnosed too late, Ian never had that therapy — this parental failure will haunt me forever — but I hope that our homespun efforts helped him.
It’s not easy to constantly move and challenge a person, who really, really wants to retreat into his own private world of patterns and swirling numbers. When Ian was young, I declined great career opportunities, because he needed this attention. Things got easier as he got older — schools and private therapist did more — but I was still needed to find activities, drive him places, and constantly advocate for more, more, more.
When the pandemic shutdown schools and after-school activities last March, the house of cards that I built for Ian with various activities and therapies fell down. Everything closed. He had no contact with other people, who could challenge him. There was no place to go, no new experiences, no mental mountains to climb. Even trips to visit his grandparents stopped.
Again, I put work stuff aside, and my husband and I found new mental mountains to challenge Ian, and all of us, really. We drove to Vermont, North Carolina, and Lake George. With more travel restrictions in place right now, we are traveling to a new hiking spot every weekend. I have been cooking a lot, and encouraging both boys to help in the kitchen; getting your hands messy is great for the brain. I push everyone out of the house every day to walk around the neighborhood or to kick a soccer ball at the field. We socialize with people outside — zoom sucks — though it has gotten really hard in the past two months; it’s only 14 degrees outside today. We go to museums and try to find ways to be creative.
So much of the information that we get on the news is about things we should not do during this pandemic. We shouldn’t take elevators, shouldn’t go on airplanes, shouldn’t go inside people’s homes. Now, all that is true, and we have followed those restrictions.
But we have not gotten enough advice about what we SHOULD be doing. We should be experiencing new things, finding ways to interact with others, appreciating beauty. We should touch, smell, see. We need to open some new neural pathways and find ways to live well in the midst of a pandemic.
Without the support of schools or the community, I feel like I have returned back to the old days of helping the two-year old Ian without help from schools or therapists. It’s been nearly a full year all on our own. Schools and the state SHOULD be setting up new plans and programs to help folks like us.
Apt. 11d 
This is a really good piece.
We have one kid who has really retracted into their shell over the past 10 months, even with in person classes, and that kid would be in an even worse position, were it not for the fact that they are going to class every day. This kid has gotten very socially avoidant.
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I can only imagine how hard this has been for you all. It almost feels presumptuous to comment – given that we’ve been back in ‘normal’ life for months.
When I see Laura describing the additional stimulus pathways she’s put in place for Ian, I can only think of the parents who don’t have the time/money/space/knowledge to replicate this for their own kids.
I see the divide between the kids who flourish in main-stream education, and those who struggle – widening even further. And I don’t see any plans in place to remedy this.
When there is a whole tranche of kids who’ve effectively missed out on a year of education (and who have loud and activist parents); the needs of the ones who have actually gone backwards, get drowned in the noise.
I feel this, even more, coming back from the performance my kid has just put on as the finale of his musical theatre holiday programme. Seeing how much he enjoys this – and how much he needs to be pulled away from the fatal attraction of the computer screen and engage in actual face-to-face contact with other kids (especially ones who ‘get’ him). The positive reinforcement of putting on a show, and gaining positive feedback from the audience (as well as the high gained from just performing) – is something which just can’t be replicated in any lockdown environment.
[Proud Mama moment: He sang the King George solo from Hamilton – and absolutely nailed it!]
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Yay! I love the King George solo.
And, yes, the divisions between the education haves and have nots is massive and growing.
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That is a wonderful solo and one challenging to nail; congratulations to him and his proud mama.
Recently someone said to me that some children cope because they focus on what’s good in their lives, which is great. You’re pointing out a flip side to that which is the maladaptive adaptation that can occur when they don’t have options. For example, finding friendship and distraction and coping skills in potentially addictive video games. It might be better than nothing but might also induce learning that impairs other learning (and, yes, that learning would also be neuroplasticity, since any learning is). A kid might thrive with access to drama and music but not find a way to make that access themselves.
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Children and teens with hearing loss have a different, but related, challenge. Confined to home, they are not stretched to try to understand unfamiliar speakers, speakers who are at somewhat of a distance, or hard to understand because of ambient noise. They lose lip reading facility; they get to use amplifying headphones on Zoom or other digital platforms which are a crutch that they don’t use out in the world. There is definitely going to be some slippage, and attention paid to catching up. Not to mention, as with autistic students, the loss of practice in daily interactions.
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“When there is a whole tranche of kids who’ve effectively missed out on a year of education (and who have loud and activist parents); the needs of the ones who have actually gone backwards, get drowned in the noise.”
This is a struggle, to make sure that being a loud an activist parent doesn’t drown out the needs of the other children, but I think the challenge should be faced by using voices to advocate for everyone. I do consider it a personal failrue to advocate for the needs of my child at the direct expense of other children with more directly pressing needs and try very hard not to. But, all children (including the ones with loud parents) are entitled to an education. It is a failure of the school system when they act to silence the noise at the expense of other children or ignore the other children. It is also a failure when the schools argue that the needs of any group of children they are supposed to serve are unimportant.
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Sorry. I know that I’ve been posting too much disability stuff and school stuff. I’ll change the subject.
Was this post okay? I’m using the first 7 paragraphs (not the COVID stuff) in a book chapter. It’s needs one more edit, but it’s not a first draft. Interesting?
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I don’t think you post too much disability and school stuff. Where does that come from?
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Shrug. It’s a niche topic, and not everyone is interested.
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Well I’m here for that as well as everything else. Can’t wait ’til the book comes out.
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Thanks!
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Also don’t think you post too much about disability. In fact, in our discussion about advocacy (and drown out voices), yours is one of the ones that informs me so that I can at least try not to drown out the voices of families that face different challenges than mine. In order to speak up, I need to know what others are facing. The head of the special needs PTA did a good job explaining the details of the special needs situation in our district (the mechanics of how our district has been able to slow walk access). She started the conversation with a presumption that we wouldn’t really care, but some of us (and I can’t speak for everyone) do. But, I can only listen when people are speaking up. I know everyone doesn’t have the time and resources to speak, but when they can, I want to hear, even if the challenges aren’t the same for my kids.
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I thought it was interesting. And a nice contrast of assumptions we (as a society) make about the capacity for change and growth of older people and neurodiverse people. Capacity to learn is always there (well, almost always) – it may take longer, or need to find a ‘hook’ to engage the mind, etc.
Plants don’t grow well in a cupboard – you give them the ingredients (water, soil, light) and then give them space them to grow in their own way.
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I thought it was great, too. What we want to find (for old people, of whom I am one, and also for neurodiverse people), is ways to preserve the gains even when the optimal environment is temporary. Sort of like, how do people who learn how to swim hold on to that knowledge and ability even when they are away from water for months or years? How do I remember how to do long division even when years go by with no need to do it? How do we give people a sort of internal ratchet tool to keep the gains? and of course, how do we give them better access to the enriching environment (whether it be water to swim in, a cruise ship with companionship,
or the more therapeutic environment that is school and extra-curriculars for students with disabilities?).
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Cool. Thank you. Sometimes this blogger needs some reassurance.
While the knowledge about brain development is a super hopeful development for people with disabilities (or even an aging brain), it has created problems for families and schools:
1. Parents feel guilty when they are not constantly developing their kids’ brains. I’ll always wonder what would have happened to Ian if I had done more.
2. Many parents cannot spent 60 or more hours per week working with their kids on their own and with therapists. They don’t have the knowledge, time, or money to spend their entire day doing “floor time” or “ABA” or other therapies. Do the children of lower income families on average end up with more severe cases of autism and other disabilities? Maybe.
3. For years, schools were just expected to baby-sit kids with disabilities. If the kids were stuck at a particular level, what happened in the classroom didn’t make a difference. Now, special ed teachers are not only expected to work on academics with their students, but they are expected to “cure” them.
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It has been amazing to see how conscious cultivation and advocacy of parents can improve outcomes for children with disabilities. We see examples in the children, and yes, the children who are out and about and not hidden away that even 20 years ago doctors were just wrong in what they thought were their ability to predict outcomes. That doesn’t mean every disability will be “fixed” but that there is really tremendous and unpredictable possibility of growth.
(there’s a flip side to this knowledge, which is that very conscious cultivation can also improve the performance of children without any identifiable disabilities which leads parents to believe they can create math geniuses and high level athletes with their child, in ways that can have that child outperforming peers at younger ages only to hit walls when they meet the national population).
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I really liked the tie in to great grandparent, cruise, and your own child. I’m not a writer and I don’t know anything about publishing. But, it’s the details that make the work for me. In this example, I think that when you get to the paragraphs with I- (and you’re using a link here), tying in a vivid example, painting the picture of what you did with him, the way you paint the picture of your G-G and aunt rolling their wheelies off the cruise would draw me in even more.
I’ve been reading along about I- and your interactions with him for years now (I think he’s a year older than my kiddo). My research field is the neural basis of learning (though at much more technical levels than teaching children). I know about neuroplasticity (and, also when one can’t expect neuroplasticity and when it can be maladaptive and also the limits of our knowledge — we have to be humble about that — there’s so much we don’t know). I remember thinking very early about your descriptions of talking with I- even when he didn’t respond and how you instinctively found what you needed to do and did it, even when it was difficult.
I’ve mentioned the Yale anxiety intervention studies: dramatic version, that it is possible to treat anxiety in children by intervening with parents and teaching them tools for interacting with their child. With anxiety in children, it turns out that lots of parents instinctively accommodate: example, explained in a NPR report on a clinic at our Children’s hospital, a child who was afraid of rain, parents started checking weather reports and having the kid stay in, to the point where the child became afraid of looking at rain out a window in our very rainy city). Showing parents how to help their child without accommodating their fears seems to have positive effects on outcomes (including helping prevent maladaptive learning). You took that harder road with I- instinctively, not just quieting down.
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And, I’ll note that your 1-3 also plays out with typically developing children, who parents imagine they can make perfect by investing sufficiently. Parents feel guilty about the ballet lessons they didn’t offer or the piano lessons; parents who don’t have time or the psychology or social connections to find all the best opportunities for their children, to craft with them, to take them to work, . . . feel that they haven’t developed their child sufficiently; teachers are expected to create math geniuses of every child in their classroom, accelerating their learning so they won’t be left behind.
(Again, a flaw in a winner take all society).
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Cool. Thanks for this feedback.
I have a big chunk of words talking more about what we did with Ian. Not sure if it belongs here or elsewhere. Hmmmm. I’ll have to keep writing and see how things flow.
Neuroplasticity can easily become helicopter parenting, conscious cultivation, tiger mom stuff when done to typical kids. I live in a hyper competitive community. Believe me, the other parents are putting in tons of time honing the skills of their typical kids. Tons. And because I was so distracted trying to help Ian, I never did a thing for Jonah. All of his friends had a ton of tutors. I didn’t know that the other parents were doing that, because I wasn’t networking with them and I was so completely overwhelmed. So, more guilt. But not as much as guilt as I have about Ian. Jonah is going to end up at the same place as he would have, if I had him drilling math facts at Kumon for years. He still got a lot of attention from us. Jonah, by most standards, had a highly privileged upbringing. It’s just when we compare him to his EXTREMELY privileged peers, does he look deprived.
Jonah will end up with a nice job, a middle class lifestyle, a family, and all the stuff that goes along with having a good life. So, it doesn’t really matter whether he attended a public college, rather than an elite private one.
Ian, on the other hand, has one of two future ahead of him. He might have a job that pays above the poverty level and doesn’t bore him to tears, so he can get a small apartment on his own and have some independence. Maybe he’ll have a friend or two. Maybe a girlfriend.
But there is also another future, one that is statistically more likely to happen. No job. No independence. Permanently at home with no purpose and no access to outside world, other than what we can provide. That is what happens to MOST people who have autism, even high functioning folks who complete college.
Option #2 is a nightmare for Ian, and for all of us. I am working really, really hard to avoid that fate.
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I feel that there’s probably a spectrum of options between #1 and #2. For example, having a job, but not living independently, or living independently but not having a job, or having a job, but one that is more for pocket money than economic self-sufficiency.
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