On being a special needs parent...

You are walking in a quiet wood. It is morning with a mild breeze. You dip your cup into the stream ...

An arrow sinks deep into the earth by your left foot. You leap forward, in mid-air notch an arrow and let fly on landing where you know your assailant will be. There are 3 of them, rested and deadly. The battle is joined.

The quiet returns. You dip your cup into the stream. You are always ready...

E prefers to think of this as akido, always equipoised to redirect the attack. I like ninja myself, cause I’m a guy.

It’s like that. You never know when a crisis will strike. When an innocent question will suddenly become a 30 minute negotiation. It’s like parenting a difficult 14yo, but it’s more and it lasts for decades.

No wonder studies show accelerated aging in special needs parents (though some of that may be financial distress related to cost of parenting special needs kids and adults).

On the up side, one never lacks a cause.

Imagining my son's memory

I want to understand how my son thinks, including how he remembers things. I think I can use that knowledge to help him be the best he can be. If I understood his mind, for example, I might be table to distinguish his memories from inventions and deceptions.

This kind of understanding isn’t easy. Not everyone thinks alike. Some “normal" people seem to think with visual images, other people, like me, do almost no visualization. Understanding the normal mind is hard, but my son’s mind runs on extra-buggy wetware. It’s even harder to model.

One clue comes from self-reports of people like Temple Grandin, an autistic adult and self-described intensely visual thinker. She writes about accessing ‘filmstrips’ to retrieve event data. Alas, my son’s mind, as best he can report, doesn’t work that way. [1]

Whether he visualizes or not I question the reliability of his memory. It’s not only that he has a hard time learning new things, he also seems to genuinely believe many things that are not true. These are generally plausible and self-consistent things that he would wish were true, but we know they are unfounded. I wonder if a fragmented memory architecture means that he is particularly vulnerable to the kinds of invented memories that are relatively easy to create in many adults. Maybe having a visual memory makes one particularly prone to invention of memories by visualization?

My experience with his memory, incidentally, fits with stories of low IQ adults who, under police interrogation, confess to crimes they didn’t commit. It’s easy to imagine him creating new memories out of suggestions.

- fn -

[1] It’s not easy to get him to try cognitive exercises (he suspects I have an ulterior motive, like, for example, changing his behavior), but I’ll try to get him to do the “window exercise” (count number of windows on one’s home, supposedly easiest for visualizers).

Special needs: so now have to worry about ISIS recruiters?

The New York Times did a good job describing ISIS (ISIL, Daeshite) recruitment of a cognitively limited 23yo woman. She’s not explicitly described as adult special needs, but she has a fatal alcohol syndrome diagnosis and limited employment options. She’s not that different from the kids and adults we care for.

Unsurprisingly her ISIL recruiter is not terribly high functioning himself.

It reminds me of the relatively harmless cults of the 1970s, but in those cults there wasn’t a lot of upside to special needs recruitment The cults wanted fundraisers; a certain amount of psychological disability was a feature, but special needs was too much. ISIL may have more use for people with cognitive disabilities.

It’s not at the top of the worry list, but if you care for a special needs teen or adult with a net connection (smartphone, etc) you can probably add ISIL to the long list of predators of vulnerable adults. Not the top of the list, but something to watch for.

Yay connectivity.

PS. I’ve long wondered what Richard (“shoe bomber”) Reid’s IQ is, and whether he’d fall in the sub 70 range of diminished responsibility.

Lessons from 18 years of a "disruptive mood dysregulation disorder" child

Just back from a Mountain Bike outing with #1. We had a great time. Can’t be that that many special needs NICA mountain bike racers; it’s something he’s proud of. He’s already telling tall tales of his daring runs. Another happy memory.

It didn’t have to be happy though. I’d planned a 3 day trip — some biking, some hanging, some other stuff. Instead after biking on day one he said he wanted to go home. Of course I’d already paid for two nights of peak season lodging.

It’s not clear why he cut the trip short, but in retrospect 3 relatively unstructured days was a lot for him. To make that workable I’d have had to plan out all 3 days in detail, and get the schedule on his iPhone calendar. I think he was also missing his sibs, especially since #2 is leaving for a 1 week autism away camp. Our kids are close, glued by shared struggle.

So this was yet another test for Dad - I’d spent the money, and now he wanted to bail. Did I fight for the principal of “commitment” or fold?

I said it was a happy memory, so you can guess I folded. The money spent was a sunk cost. It didn’t matter any more.  Once I told him we’d head home his mood transformed and we had a happy dinner. The next morning he hung out while I went off on a bike adventure of my own. We had a fun drive home. Tonight he remembers the trip fondly. I passed the test.

Our drive home gave me time to reflect. #1 is 18 now, and he’s “finished” [1] High School. Overall we’re about where I’d hoped we would be with him. There’s lots to work on, but he keeps making progress. Maybe we all did something right, not least his coaches and teachers.

So what did we do right? I think I can put it into 6 short phrases, 5 of which are deliberately familiar.

1. Choose your battles.
2. Make happy memories.
3. Accentuate the positive.
4. Cut your losses.
5. Tomorrow is another day.
6. Quit when you’re ahead.

Yes, 5 of the 6 are clichés. I did that deliberately; I realized I could take my original language and turn it into something superficially banal. Read it and try to imagine that you’d never heard those words before.

 

Here are the same ideas in the same order, but with different language…

1. Greenes/Explosive child: Divide behaviors into A (irreversible harm risk), B (criminal, reversible harm, C (infuriating, obnoxious). Always work on A, take B selectively, C is nice to do.
2. Make happy memories. Memories are made of doing things. Declare victory early. Take pictures. Put ‘em on the family screens. Burn the happy memories into the kids brains. Soon they’re programmed into thinking life was all happy. They forget the rest…
3. Kazdin and Shamu: Reward desired behavior, ignore (extinguish) unwanted.
4. Realize when you’ve got a losing hand and fold. That’s what I did today. After a while you know when you can win and when it’s time to remember what a sunk cost is.
5. It’s not a sprint, it’s an ultra-marathon. Don’t burn out in one battle, there will be time to engage with a winning hand.
6. When you’re winning, declare and celebrate victory. Don’t wait to see things to the end, celebrate the moment. Do this right and you have a heck of a winning streak. In this season, we have the power to define when each game ends and a new one begins.

- fn -

[1] He’s actually in an indeterminate state, which is a weird arrangement peculiar to special needs students. He completed his adapted course work, but after the graduation ceremony he was diverted from picking up his diploma. This magically keeps him in the school system, so he’s funded for a “transition” program that’s supposed to teach “work schools”. We think of it as 3 years of somewhat useful entertainment while his frontal lobes develop. I assume this weird arrangement is a time honored manipulation of old statute language.

I may write more about High School (the sports teams were the best part) and “transition” in future. There’s a lot to say, most of it mixed.

See also

• Things we might have done differently: High School 3/2015
• Changing behavior in children: Kazdin for most and what we do now 4/13/2015
• “Explosive Child” Greenes has web site for “Disruptive Mood Dysregulation Disorder” kids and caregivers 12/2013
• Training exotic animals, husbands and difficult children 6/2006
• Resolution 242 - discounting sunk costs 8/2010
• Be the Best You can Be: Techniques for negotiation with people on the autism spectrum 11/2014
• Be the Best You can Be: Reading about autism and ADHD - our personal favorites 11/2007

Shared reminders for family use - iCloud, iOS, OS X and even Windows Outlook.

iOS and OS X Reminders can be shared among family members. A very useful way to remind #1 or #2 of things they otherwise have trouble with.

I’m adding practice with this to #1’s personalized learning iPad curriculum.

Personalized learning with a school iPad in special needs: Feedly and Pinboard shares

I may be have an opportunity to do some more writing, in which case I’ll have more to say about the good and imperfect aspects of our school district’s iPad-based personalized learning program for special needs students.

One imperfect aspect of the program is that it doesn’t exist just yet. The school iPad is real though, so #1 and I are doing something on our own. He completes daily assignments to earn home WiFi services for his school iPad. 

One part of the program that works well is using a Feed Reader [1], in our case Feedly. I’ve subscribed him to a number of Feeds including

• 6 NYT section feeds [2]
• 7 local and national road and Mountain Bike blogs, the latter has video feeds
• Family Calendar feed and photo share
• CNN Student News (video)
• Sports: ESPN, Formula1, Golf
• Local: streets, walking

His daily assignment includes reading one or more feeds and doing a verbal summary of something he’s learned.

 

Today I added a new feed, one based on my Pinboard shares. I use Pinboard as a microblog link-comment platform. Every Pinboard post tag has a feed, and via app.net PourOver and IFTTT rules I publish to Twitter, App.net and my own archives. I started tagging science and other things I want him to study with his first name, and then I added the Pinboard RSS for that tag to Feedly.

 

So when I see a great BBC visualization of exploring the earth’s core, I just add his name to it and it shows up in his Feedly reading list as assigned reading.

[1] When the school program started we could install approved apps from the School’s service app, or “free” App Store apps (meaning ad-supported or exploitative, so superb educational apps like DragonBox are unavailable). So we went with Feedly as a feed reader. Feedly has actually worked quite well, but sadly the school has ended the App Store service leaving many apps of interest to special needs learners in limbo. If Feedly stops working I’ll switch him to using either AOL’s free Feed Reader or Feedbin.

[2] He reads at a 4th grade level. I don’t know why he likes to read the NYT.

Things we might have done differently: High School

#1 is finishing High School. Some good things have happened in High School, but if we could rerun the tape we’d have tried something different — perhaps a local charter school that specializes in autism disorders.

The Junior and Senior years have been remarkably weak. I think this is partly due to local conditions; we’ve seen problems with leadership, policies, and funding — particularly funding and support for class aides.

I don’t think that’s the whole story though — I suspect very few schools or school districts have figured out how to manage special education for ages 16-19, particularly in integrated settings.

I’m concerned the post-secondary “transition” period will be no better — particularly since care of special needs adults in the US seems to be replaying the history of psychiatric deinstitutionalization (note - did not go well the first time).

No particular words of advice here — except don’t be afraid to do something different after middle school. You might not do better, but you probably won’t do worse.

Curbi - iOS controls for special needs teens and adults

curbi gives parents, guardians and other caregivers the monitoring technology Apple built for corporate customers. It’s $7/month “Per household”.

You can’t use it with school iPads because they already have similar “management profile” technology installed. It should work with home devices.

It’s something I’m considering.

Clarity - Plantronics brand producing senior products is relevant to special needs

After age 70 or so we are almost all “special needs”. By 80 cognitive decline, sensory issues, and memory loss puts the average adult firmly into the special needs category [1].

So aging boomers are great news for special needs young — there’s now a reasonably profitable marketplace to support products of interest to the special needs community. That’s why we’re seeing affordable monitoring tech (DropCam), tracking tech (Find Friends.app), and Plantronics Clarity brand.

The Clarity brand markets amplification, but that’s a bit of a polite facade. The brand is really about simplification - amplification is relatively trivial. The E814CC cordless phone with answering machine is what most 75+ adults want. The Clarity “Pal” is a higher class version of the China-first Snapfon ezONE-C that worked well for my mother (though it’s not clear this is still sold).

The most interesting Clarity product is the Sempre “extra loud bluetooth speakerphone”, a member of the quickly emerging post-landline home phone product space. At $290 list this is a very expensive alternative to a $20 Cobra PhoneLynx (or $45 Xlink) and a $40 corded phone, but the BT914 is a reasonable alternative ($80 on Amazon).

It’s good to see these kinds of products emerge.

[1] By now we boomers know that “60 is the new 40” falls into the same category as “invest in gold”.

Guardianship (Minnesota)

We went through the Minnesota guardianship procedure with #1. He was anxious and sad — both appropriate. The procedure went better than we’d expected and he was in good spirits afterwords. A few notes if this is on your radar:

• It’s a courtroom legal procedure with two “opposing” attorneys and a judge. In most cases of uncontested special needs guardianship the attorneys are probably cooperating rather than truly oppositional, but legally they are opposed. We had our lawyer and #1 had his lawyer.
• We used a legal procedure the county recommended for #1’s lawyer - In forma pauperis. Since he has no assets he can get a court appointed counsel. His lawyer was respectful, supportive, professional and obviously experienced.
• We paid for our lawyer, using a firm recommended by #1’s county social worker who does this work. By legal standards his fee was low and he was happy to do everything by phone and email. We met him briefly just before the hearing.
• We visited the parking area and building the day before, driving by with the whole family. This always helps #1 — he likes to know what’s coming up. We were lucky that one person went ahead of us, so we saw the routine. In some cases it might be helpful to observe a hearing beforehand, I believe they are public.
• The lawyer and judge referred to documents rather than explicitly stating detailed disability — I was concerned some of the topics raised would be hurtful but they were referenced by document.
• The proceedings were thoughtful and respectful, but probably lasted about 10 minutes. I’d heard of experiences where a guardianship candidate would be repeatedly reminded of restrictions ahead, but in this case #1 was just reminded that he could petition yearly for judicial review. We have paperwork to file yearly.