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Be the Best You Can Be



Sharing what I have learned supporting two atypical minds moving from childhood to independent life.



Updated: 2018-01-19T06:38:46.670-06:00

 



Down syndrome traits -- many also true of non-Down low IQ adult

2017-09-10T18:47:44.069-05:00

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 …

  1. Often do better with written word than spoken word, even if reading level grade 2.* This includes texting.
  2. A minor misfortune that a neurotypical might quickly forget may produce a strong aversion or phobia. These can be lasting and may be very hard or impossible to verbalize. Re-exposure to the context or even attempts to describe it may reproduce the emotional response (PTSD-like)*. They may result in quitting a job that had been going well or dropping a favorite activity. These can sometimes be addressed over a period of a year or so — if the root cause can be determined.
  3. It is common to make poor word or phrase choices — perhaps for lack of a range of phrases. “Kill that SOB” for “I’m really made at him”. Some will response to a (written) list of alternative and more acceptable phrasings.
  4. “Self-talk”, monologues with gestures and dialog, are common ways to process events. They may include imaginary friends. They may be mistaken for psychotic delusions. Person with Down syndrome often need training to understand self-talk should be done in a private space.
  5. When doing “self-talk” may act out roles — consistent with a fondness for theater.
  6. “Stuck groove” - McGuire's name for repetitive behaviors with a compulsive aspect. Topics and phrases that must be repeated many times with minor variations. Arranging a desk to be “just so”.
  7. A preference for ordered environments and routines. “Stubborn” is the “S word" in the Down Syndrome community.
  8. A resistance to being hurried or made to move quickly — “slow” and “slower”. (FWIW #1 does not do this, but my #2 (autism) does. I’ve seen this a bit in special hockey, but I’ve also seen Down skaters race for the puck.
  9. Anger as a common response to not understanding, feeling pushed.
  10. Reactive “No” when asked if want to do something long desired.
  11. Strong orientation to place — often very good sense of direction.
  12. Love of food and food places.
  13. Strong visual memory but poor at time sequencing. May speak of things in present tense that occurred years ago. May have difficulty with timing of routines — not able to manage “15 minute” guide for shower.

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.




Adventures of the autistic family - the Duluth Traverse mountain biking trail.

2017-07-23T21:32:48.563-05:00

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.




Apartheid in Minnesota: Disabled need not apply

2017-07-06T21:07:44.940-05:00

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?




Minnesota adoption assistance and disability support

2017-06-28T22:16:31.975-05:00

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.




Smartphones for all has a new web site

2017-06-11T13:02:01.974-05:00

I’ve created a separate blog for my book project on smartphone support for special needs and autism spectrum teens and adults. I replaced an older static site with a wordpress site with blog (feed) and static pages. 

I’ll post links to the best stuff here. This site will continue with non-book posts focused on supporting special needs persons. They are less frequent now because I’m focused on the book work.

I’m also refreshing companion Facebook pages and a Twitter account; I’ve put that into an intro blog post over on the book site. Check it out!




Configuring an iPhone for special needs users - the summary table

2017-06-04T10:29:14.110-05:00

I've been using Facebook to share my book work (still ongoing!). It has limitations though so sharing today's update here.SettingRecommendedWiFiTurn “Ask to Join Networks” Off to reduce noisy prompts. I dislike the way Apple does automatic WiFi connections, but if you turn WiFi off completely location finding becomes less accurate. So leave WiFi on.BluetoothOff to simplify use until neededCellularSee “Controlling data use”, aboveNotificationsAMBER alerts may be upsetting and are certainly disruptive. Turn them off. Emergency Alerts are much less frequent and may be valuable in tornado country. Application Notifications are disruptive, turn of all but the ones that your Explorer needs (example: Messages, Calendar).Control Center, Access controlsTo reduce confusing screen popups turn off the “Lock Screen” and “Within Apps” options.Do Not DisturbIf an Explorer sleeps with their iPhone nearby a Guide may schedule “Do Not Disturb” for evening hours. Calls from “Favorites” or “All Contacts” may be allowed to go through.General, About, NameIt’s a good practice to give an Explorer’s device a meaningful name.Spotlight SearchTurn off most options here to keep things simple. Do leave Calendar and Contacts as searchable.HandoffDisable. Any Explorer who can benefit from this will know to turn it on.AccessibilitySee “Accessibility”, above.RestrictionsSee “Restrictions”, above. This is also discussed in later chapters.KeyboardsConsider disabling the Emoji keyboard if it is confusing — but many Explorers will enjoy using Emojis.  Most of the spelling and correction options are helpful to most Explorers and can be left alone. Dictation can be disabled for most, it can be confusing if accidentally activated and it uses up keyboard space.Display & BrightnessAuto-Lock should generally be set to 5 Minutes. Display Zoom is helpful for Explorers who may benefit from larger controls and icons. Weirdly this is different, and more useful, than “Zoom” in Accessibility. Text Size appears here and in the Accessibility settings, it’s discussed in the Accessibility section above.SoundsRinger and Alerts, Change with Buttons should be disabled. Otherwise Explorers will accidentally silence their ringer and alert. Really, everyone should turn this one off! May Explorers will want to choose a Ringtone they like (and will tolerate). Keyboard Clicks can be either irritating or helpful and should be reviewed with an Explorer.SiriSee “Siri”, above.Touch ID & PasscodeSee “Touch ID”, above.iTunes & App StoreSee Store accounts, above.Wallet & Apple PayDisable this for most Explorers, especially the double-click home button shortcut.p.p1 {margin: 0.0px 0.0px 0.0px 0.0px; text-indent: 18.0px; font: 14.0px 'Helvetica Neue'; min-height: 16.0px} p.p2 {margin: 0.0px 0.0px 0.0px 0.0px; text-indent: 18.0px; font: 14.0px 'Helvetica Neue'} table.t1 {border-collapse: collapse} td.td1 {width: 99.0px; border-style: solid; border-width: 1.0px 1.0px 1.0px 1.0px; border-color: #000000 #000000 #000000 #000000; padding: 0.0px 5.0px 0.0px 5.0px} td.td2 {width: 415.0px; border-style: solid; border-width: 1.0px 1.0px 1.0px 1.0px; border-color: #000000 #000000 #000000 #000000; padding: 0.0px 5.0px 0.0px 5.0px} [...]



Autism - updating my thinking

2016-10-05T10:27:53.690-05:00

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[...]



Smartphones for all: Restriction apps update

2016-09-23T12:02:41.016-05:00

I reviewed the world of Android and iPhone restrictions for my Smartphones for All book in May 2016:

Four months ago I settled on MMGuardian. I liked their price transparency and the feature set was a good match to the needs of Explorers.

I’m used to the lethargic pace of “parental control” products on Mac and Windows, so I figured I was done for a while. Recently a friend suggested Qustudio, and I found an encouraging review. The PC Magazine (still around!) review liked Kaspersky’s “Safe Kids” for iPhone (unlike Android devices iPhones have good built-in parental controls).

I’m going to take a look at both, beginning with Qustodio. There’s no free trial for the premium version (there is a money-back guarantee) so I’m going to first test the professional/educational market product. That comes with a 30 day trial.




Employment - not.

2016-08-25T16:35:02.967-05:00

 
Two days ago, returning from a 1 week family holiday, he quit. Without notice.
 
He gave us no real warning, and, not atypically, disregarded our strenuous advice. In follow-up we hear he was doing the job well enough, his supervisor was surprised he quit. And annoyed he quit without notice.
 
#1 has had various explanations for why he left. I doubt he knows. The one he currently favors is that the work wasn’t interesting enough — he was doing grounds maintenance and he wanted to work with machinery.
 
In our own post-mortem we came up with 10 factors: 
  1. Social isolation, there was really nobody there he would be comfortable with, no other cognitively limited adults.
  2. There was no coaching, no support, no communication channels. It was an unsupported job.
  3. He had no concept of “giving notice”, wasn’t aware that was something one did.
  4. A special needs friend he admires spoke fondly of his (much less appealing, more difficult) job in food services at a sports center and advised #1 to apply.
  5. He was unhappy at not getting “time off for state fair”
  6. He was bored, the job wasn’t exciting any more, wanted to do more interesting things
  7. The holiday took him away from his routine. His memory is odd; after 3 days things seem less familiar. We needed to drive by his work on our return and anticipate reentry problems.
  8. The commute was hard and the novelty of going by bus had worn off.
  9. He has unrealistic work expectations (dream meme scam)
  10. He has a history of quitting sports teams after about 2-3 months, this fits a trend.

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.




The dream job scam - schools are doing us no favors

2016-08-25T09:54:26.317-05:00

Sometime in the past decade or two US schools were infected with a “you can do what you dream” meme.

This made some sense for cohorts oppressed by poverty and racism. It makes less sense for privileged whites where employment is constrained more by native abilities than environmental constraints. It makes no sense at all for the special needs cognitively disabled population. In fact, it’s malignant.

Throughout his school life #1’s IEP’s featured his “dream job”. Often this was K-9 training officer.  A job he did not have a snowball in hell chance of getting. My childhood dream job was to be an astronaut — that was way more feasible, at least before the Challenger disaster.

The reality for kids like #1, particularly given the current American fad for mainstreamed and relatively unsupported employment, is that he’ll  either be unemployed or do boring and unpleasant work cleaning, serving food, or, ideally, working in a (non-Amazon) warehouse. The “Do what you dream” scam just makes reality more disappointing. 

This isn’t so different, of course, from what work is like for the majority of Americans. I wonder how much alleged millennial work unhappiness has to do with the You can Dream meme.




Exercising with autism: working within the energy budget

2016-08-10T12:53:17.828-05:00

A post about energy levels and autism activity reminded me how #2 has managed his mountain biking team participation.

He is one of the more consistent attendees of practices, but he doesn’t do a full practice. He started out doing about half a practice. Over time that’s edged up to perhaps 2/3 of a practice. He goes at a pace that feels very slow to a near 60yo father/coach — but he goes.

His consistency is remarkable. It’s the same with inline skating. He shows up. He goes at his own pace. He does it.

He is almost always limited by his “emotional energy”, not his lungs and muscles. He loves to talk to me while he does things; if we talk on a topic he’s excited about he doesn’t get tired. If the activity is not exciting, or the conversation or audio isn’t engaging, he tires quickly. I think he does better with inline skating and mountain biking because they if one doesn’t focus they can be painful. During our winter walks he listens to the podcasts he loves, then talks about them with me.

It turns out that one can improve fitness even if one’s heart rate doesn’t peak and sweat is minimal. He is going further and faster, though never with great effort.

I’m impressed.




Tips for managing one Asperger's athlete

2016-07-18T14:36:53.261-05:00

Both #1 and #2 are physically active. This is very much by design and lifelong persistence. #1 often enjoys team sports and personal bicycling, but these activities are also agitating, disturbing, and anxiety provoking. He’s very sensitive to criticism, very insensitive to advice and feedback, and by nature macho and blunt. That is a hard combination, but #2 is harder.  I think #2 may be more typical of the active Asperger’s athlete.

#2 does not like exercise. He does it because it helps him psychologically as well as physically and because he wants to please me. I encourage it because it’s critical to his mental health. He is poorly connected to body signals — so I have to remind him to drink water, to eat, and adjust clothing to temperature. He dislikes this advice and when he’s stressed he reacts badly — but he is learning to use “I don’t want water” as a signal that he’s moving into a difficult mood zone. He does best on a full stomach in cool or cold weather and poorly in hot conditions.

#2 dislikes some activities less than others. Special hockey works for historical reasons and because his brother does it. It helps that the ice is cool. Currently he least dislikes mountain biking, cross country skiing and inline skating. He has liked climbing in the past but climbing gyms are a poor location for a meltdown (which still happen). He does all these things at what I consider a novice pace; far slower than he could manage if a bear were after him. Only hockey triggers bursts of impressive speed. His pacing doesn’t change even when he becomes skillful; he handles inline skating terrain with aplomb, but always slowly.

Unsurprisingly I’m almost always his one-on-one coach. There can be other coaches around though; such as on the High School Mountain Biking team he rides with. I sometimes think about what tips I might give those that are interested in helping people on the spectrum. In order of decreasing confidence I came up with…

  1. Ask parents/guardians what works and what to avoid.
  2. He won’t remember your name or that of any other riders. He won’t recognize your or anyone else if you see him on the street. He won’t remember you without cues. If you see him in a social setting say “Hi, I’m X. I am one of your coaches. It is good to see you. See you at practice. ” That’s about right.
  3. His limits are psychic, not physical. He very rarely approaches any kind of physical limit, long before that he feels emotionally exhausted. At the very best he can do about half of what a novice can do.
  4. He thinks social interaction and manners are a very good thing. He also finds them exhausting. This frustrates him as he wishes he could do them. He likes a short greeting, but dislikes any questions. He is temperamentally unable to engage in typical social conversation; for him insincerity is a crime. (He’s very sympathetic to people in distress if he recognizes the distress. He loves counseling people by letting them vent.)
  5. Give intermittent low key positive feedback. Understated, brief, positive. “Nice climb ___” is good. Minimize enthusiasm.
  6. Avoid any criticism of the form “you’re doing x, you should do y”. He has a wildly exaggerated response to well intended criticism; he plunges into despair.
  7. Give feedback in the form of “It’s ___ I’m going to ___”. For example: “It’s hot - I’m taking off my jacket.”, “I’m thirsty, I’m going to drink water.”, “I’m going to go fast down this bit so I can quickly climb the other side."
  8. He can be unexpectedly talkative. Polite responses are good. You don’t need to contribute much, just occasional topic related verbal prompts.



Besides this blog: Facebook page for my book project

2016-07-14T13:17:34.851-05:00

My posts are always intermittent, but they’re a bit less frequent as I’ve been posting on my book project in a Facebook Page: www.facebook.com/sphone4all. I’ll create some ‘check it out’ posts in future for people who don’t do Facebook, but if you’ve been assimilated there you might “Like” that Page.

Here are some recent posts of possible interest to people reading this blog. You don’t need to login to Facebook to read them, just dismiss the annoying dialogs that might appear:




Special needs urban bicycling - what streets are safe?

2016-07-14T12:59:54.795-05:00

A few weeks ago I wrote about trying residential-urban (Saint Paul, MN) bicycle commute with #2. I realized he wasn’t ready, so we’re focusing on his mountain biking. He rides with a team I manage. It’s hard work for him, but he keeps persisting. I now do a scaled practice with him — about 50-70% of our novice rider practice routine. I got the scaling idea from my own CrossFit hobby — where I’m about 50% of the male athlete standard.At that time I wrote that #1 was doing relatively well with his bike commuting. He has quite different cognitive traits; the two boys have complementary strengths. Then, on a family outing, #1 took off on a 4 lane (2 each way) 50mph+ roadway. I’m pretty sure he knew I would not approve, but he wasn’t just yanking my chain. He was also showing off how fast he is, specifically much faster than his father. (I already knew that!). I didn’t say anything at the time, but his bike was grounded when we got home.It took a while to figure out a good approach to letting him ride streets again. I started out investigating local traffic skills classes; I thought I’d adopt that curriculum for him, maybe do a hands-on course together. I decided it was the wrong fit though. Many of the skills he already did well, some of the curriculum wasn’t relevant to real world commuting, and many of the topics were too abstract.I realized we had two issues that were relatively unique to #1. One is long term hard. He has had words with people in bicycle trails/paths [1] and, as is typical when he experiences conflict, he now avoids all bicycle paths.[2]The other is a simpler problem. He can’t easily classify roads into relatively safe vs. relatively dangerous. This isn’t obvious — try making up the rules! It took me a while to come up with a set of ‘safe riding places’. The current list with some familiar examples is:It has a bike lane - like Fairview or SummitIt has a bike path - but you have to use the path (Shepherd bike path)It is a "bike avenue" with bike pictures - like JeffersonSpeed limit is 35mph or less (NOT 45, 50, 55) AND has one lane (on each side if two way)We’ve been over the list several times; he sometimes forgets the magic speed limit. It has helped to go over how few people survive being hit at 40mph (basically nobody, not that 35mph is so great). I put these rules, together with a checklist of essential ride items [3], into a note on his iPhone (using a browser interface to his iCloud account, as described in my Smartphones for All book).Being as he is, it doesn’t work to get a simple agreement on these things. I keep his road bike locked, before I unlock it, he has to show he’s carrying the necessary gear, then he has to review the safe ride place rules (using is iPhone if needed). Only then do I unlock and wish him well.He’s starting to transition to a routine. That’s a good sign; once he has a routine it tends to stick. Wish us luck.- fn -[1] I suspect this is mostly his fault, but addressing that is part of a long hard slog[2] It is annoying to have pedestrians in the dedicated bike trails instead of the neighboring walking trail, but well tempered adults know to live and let live. #1 perseverates about these conflicts, I think they replay visually like a tape loop he can’t purge.[3] He has quirks about carrying things. Nothing can be attached to his bike. He can’t explain why he dislikes taking his ID card or something with my number on it. His iPhone has his medical info, emergency contact and the like. I’m going to get that information written on back of his “must-carry” State ID. His iPhone shares his location using Apple Find Friends so we can track his long rides.[4] As a teen and even as [...]



Ella enchanted: understanding ODD

2016-06-26T08:19:55.071-05:00

#1 has more than a few features of oppositional defiant disorder. Especially before his meds kick-in.

It occurred to us today that it's the opposite of the heroine's curse in "Ella Enchanted". Instead of saying yes to everything he must oppose it, even if he has no particular objection.

There is something comforting about the struggle.



Hubris

2016-06-18T11:28:40.360-05:00

“Pride goeth before the fall” doesn’t mean first you lose your pride then you fail.

It means “the famine goeth before the plague” or “the herald goeth before the king”. Get cocky, hit the wall. The sin of Hubris.

Did that one this weekend. Asked too much of my guys. 

It could have been worse. Ended up being a lot of driving for me and a lot of stress and yelling for #1, but there was nobody around but his brother. I could have handled my own frustration better, but I think we all survived with minimal scars. The car didn’t crash. Nobody rode their bike over a cliff.

The morning after I did my retrospective. What was I thinking?! I should have done the math. On an event that combined a new setting and not one but two novel and high stress activities all of which were weather dependent… what were the odds it would work out? Maybe 1/5.

That’s hubris. We’d had a string of successful adventures and I got cocky.

I should have had more contingency plans and I should have had at most one novel and stressful challenge to meet.

I get to try again this weekend …




Atypical minds and developmental support: we haven't learned much in 15 years

2016-06-07T10:51:11.516-05:00

I wrote the first ‘best you can be’ post almost 12 years ago. #1 was 7 then, #2 was 5. E and I already had years of experience with cognitive disabilities, autism spectrum, and atypical minds. We already understood how worthless the classifications we’d studied in medical school were. Autism, ADHD, Asperger’s (defunct now) — very rough labels that are primarily useful for obtaining services and perhaps for initial medication selection.

We thought there would be progress. 

There really hasn’t been much that we’ve seen. We still have most of the original classifications (frozen in DSM V) and I haven’t seen any useful research emerge. We’re going nowhere.

If someone were to drop a few million dollars on me I’d start by defining 5-8 axes of thinking/feeling — measures of things like external-word vs. internal-world orientation, spatial processing, impulsivity, short-term memory, etc. Things that can be tested and measured. 

I’d mine the existing literature for axes to study, but otherwise I’d toss out most of it. Test a few thousand late teens/early adults and plot them on a “spider graph”. Run the analysis to see if there are any useful clusters. If there are useful clusters, then name them. Use that as the basis for future research.

Basically, start over.




Special needs bike commuting -- it's cognitively demanding

2016-06-07T09:46:07.311-05:00

This is probably more obvious to most people than it was to me. My judgment is distorted by a lifetime of urban bicycling.

It was very difficult to teach #1 and #2 to ride a bicycle (it would be easier today - we know more). Almost as hard as teaching them to swim. They did well in the end though. #1 competed in high school mountain biking and I think he is a relatively safe urban cyclist. His impulsivity and rigidity are balanced by native caution and seemingly strong visual processing. 

#2 has a substantially higher IQ than #1, but he’s a weaker bicyclist. We did a trial bike ride to school today; he did well with guidance but he was exhausted. I think the relatively simple ride was cognitively draining. #2 is closer to the classic Asperger’s pattern — persistent attention to the external world is very difficult. He may never be able to bicycle commute safely, though he does well mountain biking (and inline skating - remarkable balance there).

In retrospect I’m not sure urban bicycle commuting is cognitively less demanding than urban driving. There’s more time to plan actions, but there’s a lot more judgment involved. By comparison car driving is more rule-bound.

Special needs mountain/gravel biking, or bicycling on separated trails, works for #2. Bicycling on city streets - not so much.




Beware passport process post-guardianship

2016-05-31T08:37:37.224-05:00

We’re renewing #1’s passport. Should be routine, but he is now in guardianship.

The post-guardianship passport process is currently undocumented. Our local passport office didn’t know the process. We’re now told we need not only the letter of guardianship but also the court order. All certified. The letters we’ve received on this have been misleading or incomplete.

It is an amazing mess going on for 2-3 months now. Our next stop will be to contact the office of our local Senator.

Be warned.




Universal data access for all Americans - what would it look like?

2016-05-22T10:06:32.576-05:00

The NYT has another “digital divide” article, this time using Detroit. I think they might be doing a series on this topic.

The problem of net access isn’t unique to Detroit, it applies to every low income American, which includes pretty much every special needs adult. A smartphone (net phone?) isn’t an option, it’s a necessity for modern life [1]. That’s one the reasons I’m writing my book on smartphones for special needs teens and adults.

It’s not hard to give everyone a smartphone. We’ll be drowning in cheap Android devices soon. The problem is data access. Home WiFi, which is notoriously unreliable and complex, costs at least $35/month in most markets. Home WiFi is too complex for most people to maintain anyway. Cellular data costs about the same per month, but it’s tricky to meter and it’s per-person, not per-family. For a family of five we’re looking at $175 a month — too much for a low income family.

So we need some universal mobile data access that everyone gets. Something around 1GB a month. That’s enough to support essential interactions, but not enough for streaming video. 

I’m thinking we’ll either end up with something that’s funded by advertising (Facebook, Google) [2] or a public mandate. It might be a good idea to do both. Either way it will need to incorporate some kind of intelligent data use and filtering.

Whatever happens supporters of special needs adults should be engaged.

[1] Many government programs still have ancient web sites that don’t work well on a smartphone browser. The good news is that hackers are tearing those web sites apart, so they’ll need to be upgraded. In time we may need to bring ADA suits against government web sites that are not smartphone accessible.

[2] Low income advertising, best seen on daytime TV, is often predatory. That is, it’s advertising for services and products that are largely harmful scams. That will be a problem.




MMGuardian - Review of an iPhone parental control and usage monitoring service

2016-05-19T21:24:31.111-05:00

Yesterday I wrote about using MMGuardian with an Android device. Today I’m continuing research for my book project and my upcoming local (St Paul, MN) presentation on May 25th by reviewing MMGuardian on an iPhone.Google and Apple have taken very different approaches to remote restrictions on mobile devices. Google has almost no built in restriction capabilities, but third party products like MMGuardian or Screen Time can dig deep into the operating system. They can monitor and disable SMS or phone services and they can lock the phone on a schedule. I haven’t used MMGuardian enough to know if this affects battery life or Android stability; that probably depends on how much support Google has built into Android.For a parent, or a Guide working with an adult or teen with a cognitive disability, the iPhone restrictions are a big improvement on what Android provides. On the other hand, if you pay the $35-$60 a year for a 3rd party service, Android pulls ahead.So how does an iPhone plus a third party service compare?The short answer is that Android plus a third party service is better than an iPhone plus a third party service. At least if the service is MMGuardian, but as I’ll explain below I think it’s the same for all vendors. Compare this iPhone screenshot on the control portal (family.mmguardian.com) to the one I did for Android yesterday:iPhoneAndroidMMGuardian provides identical web filtering options for both platforms, but on Android phones MMGuardian provides fine grained control of app behavior. Individual apps can be turned on or off including apps that access media. For iPhones the only option is to disable access to video (movie and TV but not music video) and any apps purchased from the App Store [1]. Apple’s native apps, including Music, are not affected; a different control allows remote disabling of Safari, FaceTime and the camera. I’m sure MMGuardian’s iPhone limitations are actually Apple’s limitations. I’ll go over that in a technical appendix, but I did find one problem that belongs to MMGuardian:Both of these drop downs have the same options. So what do you do if you want to undo a Disable action? When I clicked Disable a 2nd time I got an error message saying the phone could not be reached. That’s a bug of some kind.When I clicked Enable for 30 minutes everything returned — but what happens when the 30 minutes expire? Does it return to disabled? (It stays enabled — this is just a poorly structured UI. The options shown in this screen should change based on the Time Limits screen.)MMGuardian for iPhone costs $20/year and there’s no family plan. MMGuardian for Android costs $35/year but there’s a $70/year family plan. I think MMGuardian (or something like it) is a necessity for an Explorer’s Android, but for an iPhone Explorer it’s not as simple. Most of what MMGuardian does, except for the web filtering, can be managed through the iPhone’s native restrictions.Even so, I would have said MMGuardian is worth it for many Explorers — but I give the vendor two demerits for failing to document the uninstall procedure! This is particularly odd because it is well documented for Android devices.Perhaps it is not documented because, unlike Android phones, there’s nothing to stop the restricted user from doing the uninstall themselves. In Settings:General Scroll down to find a Profile or Managed phone setting. Tap on it until you get the remove icon, then remove the profile. Now delete the MMGuardian app. Deleting the Profile will cause M[...]



MMGuardian - review of an Android parental control and usage monitoring application

2016-05-17T21:24:53.558-05:00

One of the last pieces of my book project, and a part of my upcoming local presentation on May 25th, is a discussion of smartphone restrictions and controls. 

I’m familiar with iPhone on-device restrictions, but Google didn’t build anything like that into Android for phones. Android users need to find a 3rd party solution.

Finding that solution isn’t easy. This isn’t the 1990s; most of the journalists that used to write about these things are out of business. I used geek-power to narrow my options to two products - Screen Time and MMGuardian. This post has my initial impression of MMGuardian, I’ll do another one on their iPhone product then I’ll try Screen Time for Android.

MMGuardian is easy to setup. You start by installing their app on the target Android phone (typically an Explorer or teen’s phone); you can find it on Google’s Play Store or from the MMGuardian web site. The app is called “MMGuardian Parental Control”, not to be confused with a different app that can be installed on a Guide’s phone for remote management. 

There’s a free two week trial, and for once you don’t start by entering a credit card. To enroll you launch MMGuardian Parental Control and complete a short form. After initial launch a second app will be installed called MMG Browser. That’s what an Explorer will use in place of Chrome; MMG Browser.app works with MM Guardian’s Web Filter service. (I assume MMG Browser is a wrapper over Chromium, Google’s web browser platform.)

I used the online web interface to do remote management of my Android test phone. Go to family.mmguardian.com and enter the credentials you setup earlier using MMGuardian Parental Control.app. The “user name” is your email address. 

There’s a good range of controls …

(image)

In my early testing the commands send from MM Guardian’s acted within a few seconds, only the very first message failed.

App Management is quite different from iOS. iPhone apps can only be installed from Apple’s store, so it’s easy to disable installation. Android apps can be installed from any source, there doesn’t seem to be a simple way for developers to block all installations. Instead MMGuardian creates a list of apps that are allowed or blocked based on what is on the Explorer’s phone; new apps are blocked until review.

MM Guardian is looking pretty good so far. It’s $35 a year for a single phone, or $70 a year for up to five Android phones.




How might Individual Retirement Account savings impact future disability related income support?

2016-05-15T17:22:32.509-05:00

Unexpectedly, #1 is working 20hrs a week in an unsupported employment situation. Not enough to live on, but it makes qualifying for Supplemental Security Income (SSI) as disabled more difficult. Not to mention health insurance. Or financial planning beyond my grave, such as supplemental needs trusts and 529 Able plans.

Life with a cognitive disability is much trickier than it was just a few years ago.

So now he’s paying social security taxes and he could put money in a personal IRA. But how would that impact any future SSI payments? The maximal bank balance on SSI is $2000, but does that include IRA assets?

The best explanation I found online is from the SSA, I think this is the key line: “…anything else you own which could be changed to cash and used for food or shelter …”. Since disability allows early withdrawals from an IRA any savings therein would not be sheltered.

So he probably shouldn’t start an IRA. Looking at the list of things that don’t count as material assets the main exclusions are either a vehicle (he doesn’t drive) or a home that one lives in (talk about a benefit that goes to the relatively wealthy) …




Passport for adults with guardians -- similar to procedure for passport for minor

2016-04-21T14:26:04.218-05:00

We’re redoing #1’s passport renewal — because we followed the adult procedure, not the children’s procedure I wrote about in 2007. We were told since we are #1’s legal guardians we have to repeat the procedure with both of us present. (I’m not sure if we pay again, I wouldn’t be surprised.)

Even knowing about this requirement I’m unable to find anything online about it. I wonder if it’s a recent change.




Google - Accessibility isn't only about vision and touch, cognitive disabilities are neglected.

2016-04-18T09:25:21.730-05:00

Google got some good press recently for a $20 million dollar accessibility project developer grant. It’s a good initiative, but Google’s Accessibility site doesn’t consider cognitive issues.

That’s a shame, because there’s a lot Google could do. They could, for example, read my book (not published yet, but I’ll provide preprints). Of course Google isn’t alone, neither Apple nor Microsoft nor Facebook have built in support for teens and adults with cognitive disabilities. Depending on how one defines cognitive disability this is a much larger population than adults with visual and mother disorders.

There’s a lot Google could do, and there are good commercial reasons to address this need. Just as wheelchair sidewalk curb cuts have been a boon to strollers and elder walkers, cognitive adaptations also apply to many elderly and most children.

What kind of adaptations?

The obvious adaptations are scalable interfaces, such as simplified versions of Google Mail or Google Calendar. There are other angles to consider though. In Smartphones for All - Using iPhone and Android to build independence for atypical minds I write about the role of Explorer and Guide. Google, Facebook and Apple could explicitly support the role of the Guide, including delegation of identity. The Big Three could provide a formal way to apply restrictions designed for under 18 to over 18 adults with guardians or delegated Guides.

Some of these adaptations take more work than others, but in many cases we’re more than half-way there. Web services that work with both smartphone apps and a Chrome browser with Profile support enable the Guide role today, they can be extended and formalized.

The first step is for Google, Apple and Facebook to put cognitive disabilities on their roadmap. I like to think they just haven’t known how to start. All they need to do is read this blog post…