Sunday, September 10, 2017

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

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.

Thursday, July 06, 2017

Apartheid in Minnesota: Disabled need not apply

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?

Wednesday, June 28, 2017

Minnesota adoption assistance and disability support

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.

Sunday, June 11, 2017

Smartphones for all has a new web site

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!

Sunday, May 21, 2017

Configuring an iPhone for special needs users - the summary table

I've been using Facebook to share my book work (still ongoing!). It has limitations though so sharing today's update here.

Turn “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.
Off to simplify use until needed
See “Controlling data use”, above
AMBER 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 controls
To reduce confusing screen popups turn off the “Lock Screen” and “Within Apps” options.
Do Not Disturb
If 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, Name
It’s a good practice to give an Explorer’s device a meaningful name.
Spotlight Search
Turn off most options here to keep things simple. Do leave Calendar and Contacts as searchable.
Disable. Any Explorer who can benefit from this will know to turn it on.
See “Accessibility”, above.
See “Restrictions”, above. This is also discussed in later chapters.
Consider 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 & Brightness
Auto-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.
Ringer 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.
See “Siri”, above.
Touch ID & Passcode
See “Touch ID”, above.
iTunes & App Store
See Store accounts, above.
Wallet & Apple Pay
Disable this for most Explorers, especially the double-click home button shortcut.

Wednesday, October 05, 2016

Autism - updating my thinking

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.

Friday, September 23, 2016

Smartphones for all: Restriction apps update

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.

Thursday, August 25, 2016

Employment - not.

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

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.