This post will be updated for a week or two. It's to track those interested in the AI Guardian concept; this and similar posts have the tag "AIGuardian"
After falling prey to a predatory "Second Swing" (golf) promotion #1 agreed to let me cleanup his email stream. He's fond of signing up for email but, inevitably, there was more garbage than he could handle.
I unsubscribed from about 20 lists and deleted perhaps 5000 messages -- all junk.
I'm hoping he'll let me do this periodically. He's particularly vulnerable to email marketing but he does use his email and he dislikes clutter.
Progress in adulting
A few weeks ago I posted about a mandated 300 calorie a day weight stabilization program for #1. I also mentioned there's a different program for #2. There's no mandate for his program -- it's something he and I put together. He dislikes exercise but feels it his duty to do it.
The program has 3 events each week that we do together:
- Depending on season either a 1h singletrack mountain bike ride or a 1h MN Special Hockey event.
- A few miles of walking or (depending on season) 2h family road bike ride or 1h outdoor ice skating loop*.
- Home mini-CrossFit
The home mini-CrossFit is a highly scaled version of a standard CrossFit workout -- perhaps 1/3 of the intensity and effort. We have a COVID home gym so we have a good range of options. He does it with my wife and I; having Mom participate was key to building his confidence.
After some experimentation we've settled on a standard pattern. First the "WOD" (workout of the day) then the strength portion. The strength portion is standard power lifting, no Olympic lifts. We have a good set of dumbbells and a full rack and bar.
The WOD follows a standard pattern. It has four different movements that vary widely (movements are chose to also be a warm up for the strength portion since he won't do a separate warmup). The duration is always 16 minutes and each movement is done within 1 minute (so each of the 4 movements has 4 reps) or 2 minutes (each of 4 movements has 2 reps). Movement number is set so he has roughly equal time spent working and resting.
We've been doing this particular pattern for a few months and he's dramatically fitter and stronger. I don't think he realizes how much he's improved. Things that were hard for him a few months ago he now does while reading his phone. I have been gradually increasing the frequency and weight as he starts to finish in 15 seconds rather than 30 seconds. Sometime in the next year his bench press will pass mine.
I think most of the improvement is from the mini-CrossFit, though the singletrack ride would tire many adults and its certainly helpful. His exercise days are my rest days, but the effect is still impressive. It helps to be young.
* Years ago our entire family inline skated at the Metrodome every week or two all winter long. It was great and we'd do it again ... except that structure was torn down for an essentially useless Vikings football stadium.
ABLE programs are similar to tax-advantaged 529 plans for college savings.[8] In addition, a 529 plan can be rolled over into an ABLE account for a qualified beneficiary.An ABLE account can be opened by a disabled individual who became disabled before 26 years of age.[8] An ABLE account can receive after-tax cash contributions from any person, including its owner.[1] Contributions in a year are limited to the federal gift tax exclusion [9] for that year — $15,000 in 2018.[10] If the beneficiary works and does not contribute to a 401(a), 401(k), 403(b), or 457 plan, the beneficiary can contribute an additional amount above that limit. The additional amount is equal to the lesser of the beneficiary's annual compensation or the federal poverty level for an individual — $12,060 in 2018.
... 529 plans, especially ABLE accounts can only be administered by a state. When does a state see money and not figure out a way to skim off the top. The dirty little secret is that a significant portion of program management fees goes to the state. For example, Maryland and Oregon take 0.30% in administrative fees themselves in their 529 ABLE plans.
The best I have seen so far is LA ABLE for Louisiana state residents only. No annual fee, no program management fee and 0.07%-0.15% for six Vanguard funds, including the four LifeStrategy Funds. There is a state alliance of GA, KY, MO, NH, OH, SC, and VT that offers funds with asset based fees of 0.31%-0.34% for those state's residents (0.57%-0.60% non-residents).
For non-residents the National ABLE Alliance of AK, CO, DC, IL, IA, IN, KS, MN, MT, NC, NV, PA and RI. Offers funds with asset based fees of 0.34%-0.38%. Their program management management fee is 32% and I'm sure the states gets a significant chunk of that. The underlying expense ratios are 0.02%-0.06% (based on fixed portfolios using Vanguard, Schwab and iShares funds/ETFs). They have a $15 ($11.25 e-delivery)/qtr account fee.
The best plan for non-residents based on cost might be Tennessee's ABLE TN, offering Vanguard and DFA funds with asset based fees mostly in the range of 0.35%-037% (Wellington at 0.35%) with no account fees. As always the devil is in the details. E.g. the plan does not offer a debit card.
Fitness is a problem for many people, not least special needs teens and adults. Diabetes and obesity are common in our population.
Diet is a factor — it takes a lot of cognitive work to outrun the American junk food industry. The special needs population is vulnerable to deceptive advertising implying health benefits of "sports drinks".
Exercise is also a problem. Special Olympics and Special Hockey programs are low volume — typically once a week. Group classes may be intimidating or unwelcoming. Incomes are low and gyms can be costly [1]. Workout music may be intolerable. The feel and odor of sweat may be unusually bothersome. Lastly, suffering for health is a bit abstract for many with special needs.
Today I learned of an extraordinary example of doing something more ...
Upstate Nevada - CrossFit Everyday Heroes
… Upstate Nevada is the first nonprofit facility for community fitness and is motivated by the philosophy that “nobody should be denied a healthy lifestyle due to physical, cognitive or financial impairments.” ...
… The Upstate Nevada board and staff run a community first, gym second … Inclusive and adaptive programs for any type of physical or mental impairments...
… Our Everyday Heroes program offers free or reduced price memberships for the following ...
-Adults with physical or cognitive impairments and their families
-Children with physical or cognitive impairments and their families
Wow. Very impressive. I’ve seen something a bit like this at CrossFit Icehouse in Fargo ND, but Upstate Nevada is at another level. I hope they share their learnings with the broader health and special needs community.
- fn -
[1] OTOH, adults on disability support often have to spend down to avoid asset caps — exercise classes and personal trainers can be a healthy option.
I started writing this particular blog in September of 2004. At that time Explorer #1 was 7 and #2 was 5. They are adults now.
The early years before this blog are a blur now. I think by the time I started writing we had developed a reasonably effective approach and seen some progress. The years between 2000 and 2004 were harder.
We aged a lot in those years.
Now this blog is infrequently updated. That’s partly because of my related book project, partly because adult Explorer challenges are personal, and partly because the complex educational and financial (SSD, etc) challenges we deal with now are managed by my wife — and she doesn’t blog. We’re specialized that way.
So the story continues, but the blogging is less frequent. For the few that have followed this blog I feel like I should provide a summary of sorts. For those who are starting on a similar journey it might help to know one ending, then maybe go back through past posts and pick out things of value.
In general our Explorers have done well. They are both adults, for now both have guardianship status. We have, to date, for the moment, avoided the catastrophes parents of special needs children justly fear.
#1 has cognitive disabilities. Once he was an “explosive child”. Now he reads and even writes a bit, albeit largely on his phone. He has two part time jobs (no benefits) and he has longterm disability status and thus some potential security after our deaths. He’s been a reliable employee. His self-regulation and planning ability continue to improve. He loves his family. His diet could be better; it’s a typical non-college US diet (i.e. terrible). He needs more exercise. He remains a pretty good athlete for someone who rarely practices.
#2 is on the classic autism “spectrum". He is in a post-secondary transition program and is a B/C student at our local community college (he’s fine with a C). Sadly he has shown zero interest in learning coding — the one path I think could lead to his financial independence. He is usually delightful but struggles with novelty, travel, and changes in routine. He has screen time issues but works them. His self-regulation continues to improve. His work capacity is limited, but growing. His diet and exercise are better than the US average. He is kind, sweet, compassionate, and a typical middle sibling peacemaker. His great strength is persistence. He has a bad day, but the next day he tries again.
Were I to have read this in 2002 I think I’d have felt relief. The story doesn’t end until the narrator dies; it could all change at any time. But for now, well enough.
Via Twitter I’m reminded of two autism blogs that have passed on - Musings of an Aspie (ended Jan 2015) and Everyday Aspie (2017)/Everyday Aspergers (2016). @mxmackpoet called out 3 in particular [1]:
All 3 match our family's experience from the (sort-of) neurotypical outside.
There is a lot of buried wisdom in these blogs written by people towards the neurotypical end [2] of the autism spectrum. It’s sad that these individuals no longer write on these topics, there really is no replacement for blogs and RSS notification mechanisms. I hope we reinvent them some day [3]. In the meantime I’ll use this post to remind me to explore. I hope one day our #2 will find these essays helpful.
- fn -
[1] It may not be chance that these 3 articles were written in dark times of the northern year.
[2] It’s not really a linear spectrum of course. It’s some multidimensional space we can’t visualize. People further from the neurotypical space aren’t able to communicate as clearly, these writers are translators.
[3] Or simply recultivate what still exists. Lots of things wax and wane over generations.
#1 is now on either SSI or SSDI or both. Yeah, we’re not sure. Might even have changed. This is a lot weirder than I expected.
There is, with one or the other, apparently a peculiar incentive for caregivers to retire at 62 rather than, say, 67 (something to do with family Social Security caps and spouses). There’s also something in there about Medicare with MA Backup after two years on SSDI, claims that it’s best to do at least one year of SSI before SSDI, 9 month income averages, retroactive payments that can be clawed back and so on.
The accounting is interesting — trying to stay below income and asset caps.
With SSI/SSDI we can get an ABLE 529A account so that he can save without running over his asset caps. The funds can only be used for things that improve health/mobility/function — but that’s could cover a lot of ground. Maybe mobile data services? Fitness services? Golf gear? Bicycle?
The best discussion I found on ABLE plans was in the respected Bogleheads forum:
You are not going to find any 529 ABLE plan with no annual account fee and expense ratios of 0.1%, certainly for non-residents. I call the reason for this the "529/HSA Effect". While they might be quite popular among Bogleheads, only a distinct minority of the population takes advantage of either of those plans. With volume comes competition and lower costs. Now consider the minuscule population eligible for 529 ABLE accounts. If they hadn't been smart and piggy backed on Section 529, they would be even more expensive.
ABLE plans will have the same pattern as the majority of HSA accounts. Their owners will be making a number of withdrawals throughout every year such as by a debit card. Compare this to retirement accounts, where most withdrawals only happen in retirement and then maybe once a year. This adds significant administrative costs.
529 plans, especially ABLE accounts can only be administered by a state. When does a state see money and not figure out a way to skim off the top. The dirty little secret is that a significant portion of program management fees goes to the state. For example, Maryland and Oregon take 0.30% in administrative fees themselves in their 529 ABLE plans.
The best I have seen so far is LA ABLE for Louisiana state residents only. No annual fee, no program management fee and 0.07%-0.15% for six Vanguard funds, including the four LifeStrategy Funds. There is a state alliance of GA, KY, MO, NH, OH, SC, and VT that offers funds with asset based fees of 0.31%-0.34% for those state's residents (0.57%-0.60% non-residents).
For non-residents the National ABLE Alliance of AK, CO, DC, IL, IA, IN, KS, MN, MT, NC, NV, PA and RI. Offers funds with asset based fees of 0.34%-0.38%. Their program management management fee is 32% and I'm sure the states gets a significant chunk of that. The underlying expense ratios are 0.02%-0.06% (based on fixed portfolios using Vanguard, Schwab and iShares funds/ETFs). They have a $15 ($11.25 e-delivery)/qtr account fee.
The best plan for non-residents based on cost might be Tennessee's ABLE TN, offering Vanguard and DFA funds with asset based fees mostly in the range of 0.35%-037% (Wellington at 0.35%) with no account fees. As always the devil is in the details. E.g. the plan does not offer a debit card.
Do your own due diligence. You can check all the available state 529 ABLE plans here. 529 ABLE Accounts
Ugh. Much higher fees than I’d hoped for.
We’re working on the special needs trust. We’ll probably use Vanguard to hold funds, have to dust off old Trust documents to create the trust. Good discussion on Trust and home purchases here.
I think this is terribly important, but I’ve never seen it described. So, in a few minutes, I’ll share what I think.
Almost animals have memory, save perhaps the simplest single celled organisms. We think plants have a form of memory as well. There’s nothing uniquely human about memory.
Imagination is less common. It’s not uniquely human either; crows, wolves, cephalopods, cetaceans, primates — they all have some form of something that looks like imagination. We think humans have much more of it though. We can create memories of things that have not happened or did not happen. Imagination is a form of ‘false memory’ that we know to be false.
Except … when we don’t know it to be false. And there lies a problem — but I’ll come back to that.
When did humans develop the ability to create false memories and know them to be false? We think it is older than what we call “human” now — we think our fellow modern hominids, Neandertal, Denisovan and more had well developed imaginations. We suspect we have more of this talent though, and that we might have picked up additional abilities as recently as 50,000 to 75,000 years ago.
That’s very recent evolution, so it’s not surprising that, like strength and height, imagination might vary among people. It might vary in the ability to create “false” memories, and, perhaps independently, in the ability to know them to be false.
The latter variation is key. We know from research over the past forty years that it is relatively easy to create false memories in many people, but we also know that some study subjects, typically healthy university students, are more resistant to false memories than others. If we consider imagination as the generation of false memories that we know to be false, then similarly some people will be better at retaining the knowledge of what happened versus what they imagine happened.
So we know this ability to divide imagination from memory varies. It is plausible, and it fits my own experience, that people with “connectopathies” and other cognitive disabilities may have not only more limited imaginations, but also more difficulty separating the memory of what is imagined from all other memory.
I have seen this in someone close to me. When he was a child I would be upset that he was not telling me the truth, but over time I have come to believe that for him memory and imagination are inextricably blurred. What he imagines, what he wishes to be or have been, is poorly separated from what has been. There is just enough separation, I think, to create anxiety or agitation around the recall of false memory, but not enough to tell what is true memory and what is imagination.
I don’t think this problem is unique to persons with an IQ below the 5th percentile. I suspect it’s true for very many people, and it may explain why so many today are susceptible to novel kinds of media manipulation.
It’s a problem we need to research and understand both for persons with cognitive disabilities and for our society.
Recently I had the privilege of taking about smartphone support for special needs adults for the Down Syndrome Association of Minnesota. As a speaker I could attend the conference for free, including a talk by a psychologist, Dennis McGuire.
I don’t have a child with Down Syndrome (John Langdon Down’s syndrome has become Down Syndrome) but #1’s IQ is in the typical Down Syndrome range. So I was curious how much of Dr McGuire’s talk applied to my son. I decided about 80% or so — even though #1’s temperament is very different from the Down Syndrome athletes I know from Special Olympics and Minnesota Special Hockey. I suspect that overlap is primarily a result of cognitive disability rather than something unique to Down Syndrome (Trisomy 21). (By way of reference #2 is classic autism spectrum disorder but has a normal college range IQ. This list would not apply to him.)
For the parent of a child with a cognitive disability this is valuable stuff. I thought nobody studied these behaviors — but it turns out they are studied in Down Syndrome. We’ve figured most of it out by now, but it would have been good to have had this list 8 years ago.
From my notes …
I’ll ask my Down parents whether they think this list will be helpful in coaching our Down skaters. I know it would be helpful for managing my #1.
* Dr McGuire ascribed the asterisk items to a strong visual memory, even “photographic” at times. That seems plausible, but I don’t know if there are MRI studies to go with it.
So we did this. We’ve come a long way in 7 years. It’s not like there weren’t issues, but, really, it is kind of amazing.
This shocked me:
West St. Paul, South St. Paul restrict housing for disabled
West St. Paul and South St. Paul have taken steps to restrict housing options for people who receive state assistance for being both low-income and disabled…
…. “We have enough of these properties in the community,” said Tom Seaberg, a South St. Paul City Council member. “It’s not a discriminatory thing, it’s an economic issue.”…
… West St. Paul passed an ordinance in November prohibiting people who get government rental assistance and support services, a category the state calls “registered housing with services,” from living in the city’s apartments unless they’re already residing there….
People receiving assistance may be mentally ill, physically or mentally disabled or elderly. The services they get range from transportation and nursing care to help with cleaning or money management.
South St. Paul approved an ordinance last month allowing just one unit, or 5 percent of a multifamily building, whichever is greater, to be occupied by people receiving both rental help and support services….
… Kori Land, the attorney for both cities, said that “registered housing with services establishments” is simply a land-use classification in state law. She denied that the ordinances discriminate against any specific group…
How is this not like banning people by race or religion?
We have been told, and I think this is true, that if a Minnesota child with a cognitive disability receives state adoption assistance, which includes medicaid coverage it’s not possible to get disability support until the adoption assistance ends at age 21.
It appears to be an unwritten rule. I wonder if in some cases it would be better, with a special needs adoption, to forego the adoption assistance and take the disability path instead. I’m sure this exclusion is an unintended consequence.
The transition from medicaid coverage under adoption assistance to medicaid coverage under the disability program is not instantaneous. There will be a gap. Moving from childhood disability to adult disability is not fun.
This blog is about two very different people with atypical minds connected by family. One is now an adult, the other is almost there. I call them #1 and #2.
#1 wants to be independent. He does less with me now, and more on his own. That’s a sad thing for me, but I’m hardly the first father to miss time with an adult son. #2, at the moment, wants Dad time even as he takes on new things that test his limits. Things like joining a neurotypical high school mountain biking team [1].
Seeing him in that setting I have more insight into how his world looks. When he’s stressed I see him move into a mode where the world fades away to only two people — #2 and Dad.
It’s a kind of extreme focus, a tunnel vision. Even the environment fades away. In cold rain, on a muddy dirt road, surrounded by a team I’m responsible for, I need to stop and give him full attention for an extended discussion of my inadequacies. I see him enter ‘full aspie’ mode, then respond to a threat of decreased screen time by resuming motion, followed by the beginning of a stereotypical dialog. The dialog begins with me accepting responsibility for my faults, then I provide a structured apology, then he performs an analysis of what went wrong, followed shortly by an often perceptive self-analysis, then a return to the world.
Over time the cycle seems to go more quickly. The progress is encouraging, even though the journey is longer than he yet realizes.
#1 carries the autism label. He meets criteria and it helps with services. Autistic is not a great description of him though. He’s more complex. Greene’s “Explosive child”, (see my 2007 reading list) might have the best description of #1.
For #2 autism is a helpful label, and books on “autism” feel relevant. Including one I first read in 2013; and recently reread (emphases mine) …
Autism, Inside and Out - Download The Universe (review and exposition by Steve Silberman of the NeuroTribes blog)
… Harmon … published “Autistic and Seeking a Place in an Adult World," an account of the search for employment by a young artist named Jason Canha. While dozens of news stories a week speculate about candidate genes, environmental factors, and other possible causes for the condition, Harmon zeroed in on the practical issue that all families face when their kid “ages out” of services: How are they supposed to support themselves and learn to live independently?…
… The controversy over the term mindblindness -- and its relationship to compassion and empathy -- is one of the most yawning abysses in autism discourse, and too deep to do justice to here. Suffice it to say that Baron-Cohen made things worse by muddying the distinction between an inability to parse social cues in real time — which seems to be the cognitive issue unifying all points on the spectrum — and empathy, which is more like a capacity to care about how another person is feeling...
… Anyone who has spent time with autistic people can tell you that they're intensely concerned with how other people are feeling, to the point of being overwhelmed. But they often can't piece those feelings together from the usual clues of facial expression, tone of voice, and body language. At the same time, however, autistics are often adept at reading each other’s emotional states from signs that would be opaque to their typical peers…
The thing missing from this short essay, a thing I see in #2, is how dynamic his autism state is. At peak performance he has low-normal perception of his surroundings including some social cues, under stress that falls away. There’s great variability. The essay does capture #2’s empathy and compassion for other people.
- fn -
[1] The mountain biking community has quite a few people on the spectrum. In retrospect that makes sense. There’s a rhythmic swing/bouncing motion to trail riding, especially on flow trails. There’s a social aspect of doing things together, but mostly one is riding the bike and managing the terrain. Conversation is limited and one can always talk about the bike. For #2 most exercise is excruciatingly boring, but mountain biking demands focus and attention. It’s a good spectrum sport.
I think it all adds up to he got the job prematurely; he’s not ready for unsupervised and unsupported work. Maybe in 4-5 years he could do this work reliably and appreciate it, but he’s not there yet.
Now we have to twist his arm to get him back to his transition program (two years left). He now has no screen time at all before 5pm, so life at home is reading, bicycling, sleeping, and chores. That should make his screen heavy transition program time more appealing.
