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.

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

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

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

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

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

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

Setting	Recommended
WiFi	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.
Bluetooth	Off to simplify use until needed
Cellular	See “Controlling data use”, above
Notifications	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.
Handoff	Disable. Any Explorer who can benefit from this will know to turn it on.
Accessibility	See “Accessibility”, above.
Restrictions	See “Restrictions”, above. This is also discussed in later chapters.
Keyboards	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.
Sounds	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.
Siri	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.