Exercise for autism - the home mini-CrossFit program

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.

Metabolic syndrome and cognitive disability - 300 calories a day with Zwift and a Schwinn IC-4

Short version

A cognitively limited adult with early metabolic syndrome (hyperlipidemia, elevated glucose, elevated blood pressure, obesity) has halted weight gain over 9 months with a 300 calorie a day exercise program and some compliance with dietary guidelines.

Ingredients

• Schwinn IC-4 trainer ($900 to $1000 depending on demand and supply chain). This is one of the few quality cycle trainers on the market that doesn't require a subscription. (Review)
• Zwift exercise service on iPad ($15/month - we could put this on his ABLE account but I hate his ABLE account)
• Zwift Companion on iPhone to monitor activity (free)
• iMessage to send screenshot of activity and praise (free)
• The ability to disable WiFi service to a specific iPad (free with most routers)

How it works

To receive free afternoon WiFi service to his iPad #1 must do one of:

• Complete 300 calories on the IC-4 trainers as measured by Zwift (bluetooth connection to the IC-4). This takes him about an hour at a fairly easy pace.
• Go for a bike ride -- his usual ride is about 10 miles and takes about an hour but sometimes he goes longer
• Go for a CrossFit workout. He does this infrequently now -- that's a challenging social environment. He'll go most often if the son of a close friend of our family is there. (He's pretty strong by the way!)
• Participate in a family exercise outing -- typically bicycling or Nordic skiing

There are no days off -- it's 300 calories daily.

I check his workouts after 5pm using the Zwift Companion app on my iPhone. I take a screenshot and send him (and my wife) an iMessage praising his work. The iMessage is very important; if I forget he's likely to stop doing the workout.

Background - including health challenges of adults with cognitive disabilities

Obesity varies by education -- which is also a proxy for cognitive ability:

Adults who didn't finish high school had the highest level of obesity at 35.5 percent, followed by high school graduates (32.3 percent), those who attended college (31 percent) and college graduates (22.2 percent).

Adults with cognitive disabilities have the greatest risk of all. When #1 was younger he was pretty active -- participating in many sports from wrestling to inline skating to bicycling to hockey to mountain biking and more. As an adult in a socially challenging world his activities are much more limited.

His diet hasn't helped. It was never healthy, but with income from his two part-time jobs it's gone from bad to worse (switching from Coke to Coke Zero helped). His BMI steadily increased over the past two years to 30, at the low end of obesity. That's bad by itself, but his obesity is abdominal. The worst kind. 

Emily and I arm twisted him into a basic evaluation and he's classic metabolic syndrome. Everything is at the high end of normal or worse: BMI, blood pressure, glucose (HgbA1c), and LDL. He had "diabetes in 5 years with MI at 45" all over him. [1]

So we decided to exercise the "guardian of a dependent adult" role and came up with a 300 calorie a day goal and the Zwift/IC-4 scheme. Given his diet and screen habits that's not enough to lose weight but we hoped it would hold him for a while.

The incentive was WiFi restriction of his iPad. I framed as "earning" the WiFi. If he didn't do the cals, he didn't earn afternoon WiFi for his iPad (I can disable that from my wifi router).

It's #1's nature to 'just say no'. He says 'no' to most everything, then often 'yes' after he's given it some time. In this case his objections were, by his standards, pro forma. He didn't get upset when he lost WiFi for a day and then he just started doing the cals. He likes the Zwift app and rides with this videos, podcasts, and music. He takes his time -- anywhere from 50 to 70 minutes for about 10-11 miles and 300 calories.

Every day I check Zwift Companion on my iPhone, screenshot his work for the day, and iMessage it with a comment. That's important. If I forget he stops riding.

He's done it daily for 9 months, 3 seasons and a pandemic. It's a routine, and he's good at routine. He gets bored with it, but then he can do road biking or hockey or CrossFit or something else. So I'd call it successful.

PS. More posts on exercise in special needs children and adults. Incidentally, #2 is classic autism spectrum and very different from #1. He's "overweight" but not remarkably and, with fewer complaints over time, routinely does 3 exercise outings a week -- mountain biking/inline skating, home CrossFit with Emily and me, and a family bike ride or equivalent.

- fn -

[1] Or, if he was willing, he'd be on metformin, a glutide, and atorvastatin. I'm a convert to the Church of Lipitor. That sh*t is amazing.

Update 10/26/20221

I wrote their were "no days off" but he insisted he did an adequate amount of exercise running food at the local NHL arena and shouldn't have to do the trainer those days. I didn't believe it, but he wore his Apple Watch and showed me an estimate of 600-800 calories per shift (over many flights of stairs). So he won that one.

Special Needs CrossFit

It's been two years since #1 started working with a personal trainer I knew from her CrossFit coaching, maybe one year since he started going to my regular CrossFit classes.

#1 is 23 now. He can read at about a third grade level, most of his writing is text messaging to Emily or I. He's impulsive, but has generally done well with listening to coaches and workplace supervisors. Putting it all together I thought CrossFit was a bridge too far. Trying it was his idea, not mine.

I was wrong about that. He can now do up to 2/3 of a workout with some minor guidance. Sometimes he does less, but over time he's getting better. His belly grew during the lockdown, it's been shrinking since our gyms reopened. His mood is substantially better. He rarely pushes the limits of his strength, but when he does he's clearly stronger than his 61yo Dad (he is built like a bull - his "max effort" is my routine effort).

If he persists then sometime in the next 3-4 years he will be doing the men's "Rx" workouts. I can rarely do those.

The box has been supportive but they really haven't done much for him beyond any other member. They know his name, tolerate his eccentricities, and pretty much let him do his own thing. Coaches don't push him and that's the right choice.

Anything could happen tomorrow. He has often given up on things he's good at, often for no reason he can express or we can imagine. Sometimes he goes back to them, sometimes he doesn't.

Still, it has been done. He's not the first special needs adult to do CrossFit it a regular group class, but around here he's been a pioneer. Again.

ABLE (529A) plans -- what's a good one and who has it

Wikipedia has a succinct description of the 529A (ABLE) plan:

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.

ABLE plans were based on 529 plans, but the comparison misleads. The value of a 529 plan is that after-tax donations can grow and be disbursed without taxation. That's also true of a 529A, but it's not the point. People with ABLE accounts don't pay income tax anyway.

The entire value of an ABLE account is that it bypasses the savings limits of Social Security Income. SSI savings limits are extremely low -- about $2000. SSI recipients can't save more than that. The cap was last updated in 1989, it's been minimally changed since 1974. It's insanely low. There are limits on income too; and gifts are part of income.

ABLE accounts bypass that crazy low limit. In an ABLE account savings can grow to $100,000; 50x higher than the SSI limit.  Money can come gifts or from the account owners's contributions. The catch is those savings can only spent on qualifying expenses. Rent is the big one. Things that are related to independence -- like a smartphone, maybe gym expenses (health), legal fees, disability expenses. Training and education, health costs, transportation.

ABLE accounts launched in 2016-2017. I don't think they've been super successful. The rules are fuzzy and people on SSI learn mistakes are punished severely. There's also not enough money in play to excite the banks.

Our #1 has an ABLE account through Minnesota - currently managed by MinnesotABLE. They aren't a great solution. The web site is mediocre at best and key topics are undocumented, It's easy to add money, hard to remove it. In particular there isn't a useful debit card.

MN doesn't do anything special for residents so I went looking for better plans using the ABLE National Resource Center State Compare app. I want:

• A debit or credit card tied to the account. I want self-documenting transactions. If #1 is buying a new iPhone I want that on the transaction record.
• Low fees
• Small management fees
• A quality web site

It's very hard to find information on ABLE plans. This is one of the best discussions of the general options and why expenses are high or hard to discover (from 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.

I'll update this post with what I find, for tonight I'll review:

Ohio

• STABLE card: loadable prepaid debit card
• Vanguard
• $42/year maintenance fee

Massachusetts

• Has debit card
• Fidelity Attainable Savings Plan
• No annual fees

Oregon

• web site information unimpressive, doesn't explain how the prepaid card works
• has annual fee, does at least describe management fees on mutual funds (most sites don't do this)

Pending: Tennessee, Lousiana,Virginia

See also

• ABLE Plans and special needs trusts 7/2018
• ABLE plans 2016

Thanksgiving 2019 - update

Continuing in the vein of "how does the story end" (Jan 2019) #1 and #2 continue to mature and achieve. It would have been a great comfort 17 years ago to see #1 vault the 36" box jump at our family CrossFit Box. I didn't think he could jump that high. Wrong.

I guess I gave away the story there. After about a year of working with a personal trainer who is also a CrossFit coach #1 joined my box. He has done better than my fondest hope. Not least because coaches have hit just the right tone ... friendly, supportive, but also treating him much like every other adult. Same for our athletes. The power of expectations is hard to overstate.

And ... special hockey volunteer, plays adult rec hockey with me, works with and rides horses, special  olympics snowboarding, power lifting, golf, summer bicycling, works two part-time jobs ...

#2 had his best grade ever on a college exam. His studying is better. Started working in a minimum wage job filling popcorn bags but tells me he doesn't mind the boring work, likes using his hands, likes the money. Managed a challenging problem while working with a supportive teacher that would have melted him a year ago. Taken on a mentoring and support role with his special hockey colleagues. Continues his Tae Kwon Do training.

Both gentlemen are a pleasure to be with.

Twin Cities facility for special needs strength and fitness training

(I copied this over from my shares feed as it fits better here).

My #1 is doing their special Olympics strength training at Built on Bravery, located at the Mendota Height MN Lions United Fitness Center (map):

... Lions United is a new kind of training center, designed specifically to prepare people with disabilities for exceptional performance in individual competitions, team sports and life, especially people with autism, down syndrome and cerebral palsy. We’re dedicated to Special Olympics’ Project UNIFY and Unified Sports®, which means we bring people of all abilities together to strengthen individuals, relationships and communities....

This new facility is first in Minnesota to focus on persons with cognitive disabilities.
The Star Tribune did an interview with the founder:

Q: Membership fees and hours?
A: Twenty dollars a month for people with special needs; $40 a month for others. We’ll also have an incentive program where any member can receive up to $20 a month through their insurance. Staffed hours are Monday-Thursday, 3:30 p.m. to 10 p.m.; Friday 8 a.m. to 10 p.m.; Saturday and Sunday 8 a.m. to 6 p.m. But members will have 24-hour access.

I think there may also be family memberships.

There is a big unmet need for health and fitness support of special needs teens and adults. Diets are often worse than average and there are few welcoming places to go. (Several CrossFit gyms are welcoming, but that's a big climb. This facility has grant support.)

We need more like this!

A (very) inclusive CrossFit gym - in Reno Nevada

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.

How did the story end?

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.

On autistic meltdown and exhaustion

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]:

• From the Inside Out: An Autistic Shutdown – Everyday Aspie Feb 2017
• Where I Go When I Shutdown | Musings of an Aspie  Oct 2012
• Autistic Regression and Fluid Adaptation | Musings of an Aspie Dec 2013. This concept of transient autistic regression does not appear in the medical literature. Which speaks volumes about the miserable state of modern clinical research into autism in general, and post-pubertal autism in particular. I suspect the contribution of biology and environment varies by autism pathophysiology and age, but really we need the research.

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.

ABLE Plans and Special Needs Trusts

#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.