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.

Techniques for negotiation with people on the autism spectrum

Negotiation is a big part of parenting any child, but the toolkit varies.

We’ve used “Three Steps to Yes” (persuasion for geeks), Kazdin’s extinction/reinforcement, Greenes Explosive Child (above all) and more for working with #1. It’s made him a skilled negotiator, which isn’t a bad skill to have. For #3, so far, standard parenting tools suffice.

#2 is different — he’s classic Asperger [1]. He needs a different set of negotiating techniques — such as the set outlined in a recent NYT essay on Hostage Hoiidays. Another addition to the toolkit - I particularly liked the obviously-fake-but-genuinely-effortful apology, the focus on vocal inflection, the techniques of partitioning/minimizing and “Track II” / 3rd party interventions.

Special needs parenting is very educational.

[1] We have no useful terms for taking about these complex neurological disorders, but he resembles the original stories. Remarkably he was classically autistic as a young child, once upon a time we weren’t supposed to revise that early label. Lots of nonsense in our dying classifications…

See also

• Understanding an unusual mind 5/2010
• Persuasion, adolescence, and the joys of prison life 4/2010
• Reading about autism and ADHD - our personal favorites 11/2007 (Explosive Child)
• Training exotic animals, husbands and difficult children 6/2006
• Gordon’s Notes: Negotiation 2014: A compilation of state of the art techniques 11/2014

Special needs interscholastic mountain bike racing

NICA, the National Interscholastic Cycling Association, has been expanding into Minnesota. This year #1’s high school participated in the mountain biking program, and he joined the team. He started riding with them this past summer.

Special needs and mountain biking are not an obvious combination, but despite his autism-spectrum cognitive disability #1 has been a pretty good recreational athlete. He’s played mainstream rec baseball, hockey, and soccer, learned swimming (mean butterfly), XC skiing, snowboarding, skateboarding, road biking [1] and more. High school wrestling didn’t go too well, but I thought that one was seriously crazy.

So mountain biking wasn’t out of the question. He joined the team, did well on practices when I was able to join as a ride leader, and … 

… he completed two NICA mountain bike races - riding challenging courses for about 2 hours. He’s done some impressive things in his almost 18 years, but this was the toughest challenge he’s taken on.

It wasn’t easy for me either. Over the past two years, perhaps as #1 becomes more aware of the gulf between him and his neurotypical peers, he’s tended to make a good start on his sports teams but then get discouraged and anxious — and finally drop out [2]. This hits me on a tender spot - I’m not good with quitting. It doesn’t help that he usually wants me to be an active parent — so when I follow him out the door I leave his team short a parent volunteer.

I had to struggle to remember lessons from a year ago, but I was also inspired by a May 2014 NYT article on interventions that help low confidence college students…

Who Gets to Graduate? - NYTimes.com

Select the students who are least likely to do well, but in all your communications with them, convey the idea that you have selected them for this special program not because you fear they will fail, but because you are confident they can succeed…

…  The negative thoughts took different forms in each individual, of course, but they mostly gathered around two ideas. One set of thoughts was about belonging. Students in transition often experienced profound doubts about whether they really belonged — or could ever belong — in their new institution. The other was connected to ability. Many students believed in what Carol Dweck had named an entity theory of intelligence — that intelligence was a fixed quality that was impossible to improve through practice or study. And so when they experienced cues that might suggest that they weren’t smart or academically able — a bad grade on a test, for instance — they would often interpret those as a sign that they could never succeed. Doubts about belonging and doubts about ability often fed on each other, and together they created a sense of helplessness. That helplessness dissuaded students from taking any steps to change things. Why study if I can’t get smarter? Why go out and meet new friends if no one will want to talk to me anyway? Before long, the nagging doubts became self-fulfilling prophecies….

… Every college freshman — rich or poor, white or minority, first-generation or legacy — experiences academic setbacks and awkward moments when they feel they don’t belong. But white students and wealthy students and students with college-graduate parents tend not to take those moments too seriously or too personally. Sure, they still feel bad when they fail a test or get in a fight with a roommate or are turned down for a date. But in general, they don’t interpret those setbacks as a sign that they don’t belong in college or that they’re not going to succeed there…

It is only students facing the particular fears and anxieties and experiences of exclusion that come with being a minority — whether by race or by class — who are susceptible to this problem. Those students often misinterpret temporary setbacks as a permanent indication that they can’t succeed or don’t belong [3]

#1 isn’t going to college, but I think there’s a broad lesson hear for special needs students as well.

So, my part in this project was to keep it positive. I’d grind my teeth when he skipped practice, but I’d grind quietly. I backed off, didn’t get wound up [4], stayed positive. This only worked because his coaches were pretty laid back — something that may be more common in mountain bikers than baseball coaches. I kept the bribery to small things offered when he was obviously looking for something to boost his confidence.

It worked. We could play it again and it might work better or it might not work at all. We were right on the edge. 

Knowing he can do this though — that’s a confidence booster that was worth the wear and tear on the both of us.

- fn -

[1] The road biking has become his first self-discovered anxiety/stress control behavior. He does 10-15 miles a day, tracked using Find Friends.app

[2] My interpretation. It’s very hard to to judge his emotional states, I’m not sure they map onto common models.

[3] Not directly related to this post, but I grew up poor and ended up, by chance, at Caltech. I definitely felt like a fraud, I think I only succeeded because I had no other choice.

[4] Much. Except when the low end bike he started with reached end of life. I bought a decent race-quality (entry level) mountain bike, at which point he stopped mountain biking altogether. That cost me some enamel; I think he found it hard to make the transition to a new bike. Change.

See also

• You never know … 2014
• Autistic exercise: options for the distracted teen 3/2014
• Minneapolis and Loppet Foundation/Courage Center launch Adaptive Cross-Country Ski program 12/2012
• Adventures in special needs – A Nordic ski resort 2/2010. Wow, only 4 years ago, but things are much easier now.

Dropcam - Training for home alone

I bought a Dropcam Pro - $200 at Amazon. It’s the market leader in home monitoring, I’ve been considering it for a few months. Not for home security reasons (though that’s nice), but because some special needs teens have been known to get into trouble when home alone.

The idea is we can turn on the camera in the living room, and listen to yells throughout the house. There’s two way audio, do we can holler too. The audio is non-duplex with a few second delay, so it doesn’t work for a conversation.

Installation was very simple, you can use a Mac, Windows, or Android/iOS device to manage setup. I didn’t sign up for the monitoring service - I just need to turn it on when I want to check up on the kids. It’s easy to turn on or off from the iPhone app.

I’ll posts more on how well this works in practice. The hope is that this will provide just enough external reinforcement to help #1 manage at home with a sibling present. When #1 moves into his own place this will be useful there too. Seeing how well this works I now wish I’d bought one for use with my mother.

See also

• The Best Wireless IP Camera | The Wirecutter: Dropcam. They compare to AVTech AVN813, Netgear VueZone and several others.
• D-Link vs Foscam vs Dropcam DIY Video Surveillance Comparision: Foscam is popular with techies
• Dropcam HD Reviewed - SmallNetBuilder
• Be the Best You can Be: Smart home, DropCam, and special needs

Update 10/26/14: The Dropcam is working well. Just knowing it’s present is a calming influence. Recommended.