Sharing what I have learned supporting two atypical minds from childhood to adulthood.
Sunday, February 05, 2023
Explosions and anxiety: Adult special needs life is a tough haul
Saturday, February 12, 2022
Progress in adulting
Progress in adulting
- When asked to do something he doesn't want to do #1 rants for shorter and shorter periods of time and often then just does it. (Assuming he sees the point of it.) Or he comes up with a reasonable compromise.
- #2 has a line on a reasonable government job that he can do well and that is well suited to him. (Government jobs have lots of accommodations and support for neuroatypical.)
- #1 hasn't gotten a handle on his diet (he's classic 'metabolic syndrome') but he understands the need and sometimes he tries. He cheerfully does his 300 calorie a day bike trainer routine. Every day.
- #1 has done a good job as a volunteer/aide for special hockey. (He can't really play because his shot is far too hard for our goalies and he never figured out how to shoot any other way.)
- #1 has managed, so far, to avoid conflict with an adult coworker who bullies and torments him.
- #2 has passed his community college courses so far and may be willing to do more technical coursework (that's likely to be a good fit for the gov job).
- #2 has been doing a solid CrossFit derivative workout once weekly. He's willing to exercise 3 times a week and his strength and endurance are consistently improving.
Sunday, August 02, 2020
Special Needs CrossFit
Thursday, August 25, 2016
Employment - not.
- Social isolation, there was really nobody there he would be comfortable with, no other cognitively limited adults.
- There was no coaching, no support, no communication channels. It was an unsupported job.
- He had no concept of “giving notice”, wasn’t aware that was something one did.
- 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.
- He was unhappy at not getting “time off for state fair”
- He was bored, the job wasn’t exciting any more, wanted to do more interesting things
- 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.
- The commute was hard and the novelty of going by bus had worn off.
- He has unrealistic work expectations (dream meme scam)
- 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.
Thursday, July 14, 2016
Special needs urban bicycling - what streets are safe?
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 Summit
It has a bike path - but you have to use the path (Shepherd bike path)
It is a "bike avenue" with bike pictures - like Jefferson
Speed 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 an middle-aged adult I’ve ridden more dangerous roads than the one he got grounded for. One of the unfair features of a monitored special needs adult is that you don’t get to do the stupid things your father did.
Monday, April 11, 2016
Hockey as a guide to behavioral interventions
#1 and I made our first trip to the yearly USA Hockey Disabled Hockey Festival, special hockey division.
Watching two of his hockey issues I realized they mapped well onto behavioral issues.
He’s a strong player, but very weak at passing. He also over-responds to aggression or even accidents, rapidly escalating. (Sometimes, to his credit, the emotional response is so strong he removes himself from play. Which isn’t a great response, but not the worst. Fortunately this is special hockey, a more forgiving place.)
I think both of these match onto more global issues.
Passing is cognitively hard and, unless one has skilled teammates, often unrewarding. Instead of scoring a goal, the puck goes to the opposing team. The only reason a strong player passes to a weaker player is because of social pressure and social rewards. Turn-taking type behavior in other words. #1 is weak at this kind of interaction; he doesn’t “feel” the social pressure.
Handling escalation is also tricky. #1’s sister can set him off with a look. (If she’s in a bad mood this works well to spread the feeling.) He is unable to respond with an equal or lesser action; in part because he mis-remembers the initial provocation. In his memory it is far bigger than it was; though in hockey the aggression is often flagrant*.
Both of these issues will factor into our summer behavioral program goals. Special hockey will give us a concrete way to manage progress. If he passes the puck, and returns an elbow with no more than an elbow, then we’ll have made real progress.
* Parenthetically, we have a bit of a referee problem in special hockey. If they come from regular hockey they overlook the routine illegal roughness that is hard for even neurotypical players to handle (fights!) and is well beyond what special hockey players can manage. Conversely, if they are used to less competitive special hockey they are unprepared to see elbows thrown and sticks slashed. It’s a hard job.
Friday, April 01, 2016
Employment - an unexpected direction for #1
Our #1 has always straddled the borderline between (legal) disability and non-college employment. Much as he has been on the borderline between participating in conventional sports (rec hockey, adult hockey) and assisted sports (special hockey).
That trend continues. During a work rotation through the first year of his ‘transition program’ he was offered part-time (50%) conventional employment doing warehouse work. Not enough to live on, but perhaps a problem for qualifying for disability, supplemental needs trusts, 529 ABLE plans, housing support, medicaid and more.
He is, of course, quite excited. We have, of course, mixed feelings. We haven’t focused on managed savings, budget training, debit cards and the like. That seemed years away, and likely to involve only trace amounts of money. What happens now to his transition program? Do we now get him his (deferred during transition program as is the peculiar norm) high school diploma? Do we divert his income into “room and board” that we can in turn invest in an S&P index fund for him?
What about transportation? He hasn’t completed transit training and it’s a difficult 1 hr bus ride to his job site. We are fortunate he is a strong cyclist, the weather is decent, and there’s a safe 30 minute route to work.
I suspect he will tire of employment once the novelty wears off. That has been a common pattern with other activities on the far side of disability. He is older though, and we see signs of more executive function. Flexible we remain…
Friday, December 11, 2015
My book to be: The special needs smartphone for independent living
I’m working on a book with a working title of Special Needs Smartphone. I don’t think that will be my final title, but it’s a good description. It’s a book I’m well placed to write; I have years of experience with two very different special needs smartphone users, I’m a geek, I’m used to writing, and I have the opportunity to do it. I’m not expecting to make money, but I do hope to make a positive difference. The book will cover both iOS and Android (that’s not easy, by the way :-).
I’m writing this book for parents and other supporters of teens and adults with a range of different minds. This includes teens and adults with IQs of 60-70 and limited reading skills, but it also includes normal IQ autism spectrum teens managing disabling preoccupations or aversions to some independent living skills. Some on the spectrum, for example, might find calendaring painful, have an aversion to lists and schedules, or be unfortunately prone to getting lost.
The goal of this work is to support independent living and mitigate harm that can come to a vulnerable population living with a tool of amazing, sometimes frightening, power and versatility.
I’m considering publishing options and a kickstarter campaign, but my default assumption is that I’ll self-publish through Amazon print-on-demand and self-fund. For the community I’m trying to reach I think a printed book is essential, eBook is secondary.
At some point in the next few weeks I’ll launch a domain and blog/tweet under my “true name” to promote the book and support readers. Until then I’ll have some posts here; I like blogging as a way to think about what I’m working on and some of these posts should be useful in themselves. You can get a feel for what’s coming by reviewing the Best You Can Be blog posts I’ve written on this topic over several years (Technology tag). One caveat — the book tone will be lighter and brighter than my usual somewhat dour style (I blame my Scots ancestry).
If you have ideas, advice, want to recommend a publisher or just want email notification of publication, please email me at jgordon@kateva.org or leave a comment below.
I’ll let you know how it goes.
Saturday, June 20, 2015
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.
- Choose your battles.
- Make happy memories.
- Accentuate the positive.
- Cut your losses.
- Tomorrow is another day.
- Quit when you’re ahead.
- 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.
- 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…
- Kazdin and Shamu: Reward desired behavior, ignore (extinguish) unwanted.
- 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.
- 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.
- 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.
[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.
- 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
Saturday, November 22, 2014
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
Friday, December 27, 2013
Calibrating consequences: managing the iTunes purchases
I should have been more suspicious of the iTunes statements. There seemed to be a lot of them.
Eventually I connected with my spouse, and we realized #1 was exploiting an iOS 7 iPhone configuration error. When he inherited my 4S the iTunes account was configured for delayed authentication (the default [1]). Every time we bought a song or video, he added on a few more. Last year's Stanley Cup series was the giveaway.
When I collared him he pretended not to understand that his purchases cost us money. I respect that. If you have a cognitive disability, you might as well use it to wiggle out of problems. It didn't work though, he knew I knew that he knew how the charges worked. He quickly gave up that alibi.
So we needed consequences. What formula would be most educational, without inducing full rebellion or breakdown? How could we use this to advance his financial skills - and maybe even get some money back?
I needed a balanced formula -- something that had a built-in reward paired with a consequence extending over time. It had to be understandable to him, ideally something visual. After a bit of thought I came up with a formula that worked very well - not least because relatives gave #1 generous iTunes/Amazon gift credits this year.
I created two iTunes Playlists for him - one with the music he'd acquired honestly, the other with his criminal gains. [2] Each time he wanted a new tune, he had to pay twice. Once for the new tune, and once for an old one. I then "moved" the "stolen" tunes from the Unpaid to Paid list, in addition to putting the new purchase on his phone. We did the same thing for the videos.
After the first few purchases he caught on to how the system worked. He was clearly satisfied -- he likes justice fairly applied. Even, or especially, when it's applied to him. We went through about 1/3 of the backlog with his allowance and snow shoveling money, then a deluge of iTunes/Amazon gifts took out the rest. In an impressive gesture he cleared out the last 15 in one direct purchase.
Effective consequences require creativity; this one worked. I'll look for other opportunities to apply this kind of balanced approach. I know they'll come along.
[1] For us this was an annoyance, but in some cases the family financial impact could be serious. I wonder if Apple ever reverses charges on appeal... It would be "nice" if Siri could execute "configure this phone for a child".
[2] I intended to only sync the first to his iPhone, but with iOS 7 there's no way to prevent someone from using WiFi to put purchases music/video onto a phone. I turned the Cloud setting off, but he just turned it back on again. He's learned a lot from his iPhone.
Saturday, December 21, 2013
"Explosive Child" Greenes has web site for "Disruptive Mood Dysregulation Disorder" kids and caregivers
#1 and I went snowboarding today. Which doesn't sound like much except that for him snowboarding has been more aspirational than real, and I'm a 50+ Dad.
I knew he needed me doing it with him, and what we both needed was bunny hill time. Not lessons, we did some of those years ago -- a borderline fail then. We needed sliding time in decent conditions.
Which we got. There were some anxieties of his I had to work around, some on the fly strategy invention, and of course I had to learn to snowboard (yay quick iPhone wikihow consultation) -- but we succeeded. Good runs on the greens for both of us. We stopped when he wanted to quit -- at a successful moment.
On the way home I thought of how far he's come since ages 3-7. Those were tough years, they left their marks on our faces. When I started this blog we were just emerging from the worst of it. By then we were experts in applying the lessons of Greene's "The Explosive Child", which I wrote about in 2007.
It occurred to me that I ought to send Greene a thank you note. That led me to a relatively new site and organization of his, called Lives in the Balance. Nice to see the team working there.
You can Tell Your Story | Lives in the Balance. I figured that would be one way to say thanks...
For our cognitively impaired multi-label son, ages 3 to 7 were hard. Very hard. I'm glad I don't remember them all that well; I do remember contemplating splitting the family so I could care for him away from his sibs.
We studied the Explosive Child intensively. It wasn't the only thing I studied -- operant conditioning with extinction of negative behaviors and rewards for positive behaviors was essential too.
Things started to get better around ages 7-9. We had more challenges, especially as he got older and stronger, but somehow his judgment developed just a bit ahead of his physical strength. The biting went away, the hitting went away...
He learned to read - at least to around 6th grade level. He learned many other things too -- hockey, swimming, snowboarding, biking, mountain biking, baseball, wrestling (ugh), xc skiing... Many more.
He's almost 17 now. Who knows what lies ahead. Things could go south at any time, but that's true for any of us.
He's come a long way.
The Explosive Child was the most important book we ever read ...
PS. Visiting the site I learned the "Explosive Child" has a new DSM-5 label: Disruptive Mood Dysregulation Disorder - replaces the misused 'bipolar disorder' for kids like #1. There's a comic outlining the evolution of the label, which is as good and as bad as any of 'em .... "PIA", Conduct Disorder, Oppositional Defiant Disorder, Intermittent Explosive Disorder, Pediatric Bipolar Disorder, Disruptive Mood Dysregulation Disorder.
Sunday, October 06, 2013
Explaining disability to a boy who won't go to College - truth and hope
I wrote the end of High School, the end of dreams six months ago. Before and since I've been thinking about how to explain to #1 why he isn't going to get a (true) High School diploma, and why he won't be going to any of the Colleges he loves to dream about.
I think most would agree that this is not an easy conversation.
Fortunately he has given me time to think. He approaches the topic from time to time, but usually veers off. I think I now have a story that is true but leaves some hope and a direction.
The key is that he has many cognitive and behavioral disabilities. Some are more amenable to improvement than others. There's not much, for example, he can do about his base IQ. So I'm not going to talk about that; I won't say 'there are some things your brother and sister learn quickly that you cannot learn'.
I can, however, talk about disabilities that I expect to improve with time and effort. One his core disabilities is difficulty persisting in tasks that he does not enjoy. For example, he has always been a relatively talented hockey and baseball player -- but he is very inconsistent at practicing. Lack of practice means he plays at a C or rec level rather than at a more competitive level.
Of course his hockey or baseball activities, though important for his life, aren't my key focus. They illustrate a broader problem that has biological roots in cognitive fatigue and frontal lobe dysfunction. This biology, however, has shown more change than his base IQ. These problems appear to respond to training, practice, medication, and time. They are problems that can be addressed.
So it is, at the moment, that I expect to explain his disabilities this way:
It is hard for you to work on things you don't enjoy. We and others can help you learn to do that. When you are able to work hard on things that are tiring and bothersome, you will be able to do many things. If you want to do an online High School degree then you could do that too.
Saturday, October 05, 2013
ADHD, CDD, and Related Conditions - what I wrote in 2002 holds up pretty well today
I started this blog in 2004, Best You Can Be, when #2 (Asperger) was 5 and #1 was 7. Since that time I've written about my thoughts on the nature of brain disorders and the limits of our medical classifications -- among other topics.
Today I rediscovered one of my last pre-blog classic personal web pages -- it was largely written in 2002 and when #2 was not-quite diagnosed and we were getting our heads around how to work with a 5 year old #1. In some ways the hardest times (to date!) were behind us -- but I'd had time to think about the nature of cognitive disorders and disability. I put some of those thoughts into a web article called ADHD, CDD, and Related Conditions.
Rereading it today it holds up pretty well -- I did a good job anticipating the next decade of evolving thinking about classifications and the nature of disability. If you're thinking of ADHD or similar disorders, it might be worth a scan even now.
Saturday, September 14, 2013
Special needs update Sept 2013: High School again
Quick notes that might be of interest to caregivers ...
- #2 son ("aspergers", college-bound, grade 9) has started high school at a local teache-run project-based granola-heavy charter school program. This will be an interesting experiment. Our primary concern will be college requirements and getting passable scores on college entry exams.
- #1 son (various, not college, grade 11) did quite well over the summer learning Algebra via DragonBox. He's excited about his Algebra 1 text; he does better at algebra than he did with arithmetic. It's a relief to have him finally "allowed" to use a calculator and forget trying to do long division. He's also (finally) doing "shop" (mechanical skills are deeply unfashionable in American high schools) and is very keen on that as well -- and he's learning useful skills.
- We've made fantastic progress in social acceptance and support of the neuro-atypical over the past forty years, but we're still in early days with "gender relationships". That will the frontier over the next twenty years, then we'll tackle senior issues ...
- Managing #1 son as an almost 17 yo is much easier than managing him as a 4-5 yo. He used to only respond to positive feedback, which is like rowing a boat with one oar. Now he has some understanding of consequences and of the near future, so we have one and a half oars. On the other hand, the stakes are far higher, the quirks more complex, and the cost of mistakes far greater. At least we're holding our ground though.
- #1 son did pretty well at his summer "job" working with horses at a (jewish) summer camp. That camp has been good to our (gentile) family.
- #1's high school is hell bent on serving the elite white community (see this, this and this), which means it's competing with academic-strict white charter schools. Big focus on strict grades, no retakes, etc. On the other hand, his teachers seems an experienced and sensible group -- including the brilliant one who is going on maternity leave (shouldn't be allowed -- just bring baby to class :-).
- St Paul schools have realized that their systems for net filtering and use controls are completely broken [1]. Their response is to edge towards a "zero tolerance" policy of net misuse. This will be a problem for quite a few teenage boys, but it's an almost impossible problem for teenage boys with substantial frontal lobe dysfunction. On the other hand #1s stealth is astounding [2] and his special ed teachers scoff at the written policy. So we'll track this.
- Along the lines of Come a long way we recently competed the St Paul Classic. We toured the route by car a week before the event, and we've done portions of it many times, but it still went remarkably well. #1 easily completed the 30 mile route, and was a safer and wiser rider than every other teen and 80% of the adults.
[1] I completely sympathize - there is literally no way to fight this without a LOT more help from Apple and Google -- neither of which show the slightest interest in helping parents or schools. This is especially true because the same technologies that protect us from hackers (and the NSA) also break old-tech filters. Ultimately though I blame parents -- who don't pressure Apple/Google to pay attention.
[2] HIs ability to cover his net tracks is a weird pseudo-savant feature akin to his freaky visual processing. These kinds of capabilities are why I remain unsure of his future limits.
Saturday, July 06, 2013
Come a long way
As long as I can remember we've done somewhat crazy things with our special needs kids, neurotypical daughter, and our dogs (Molly, then Kateva). We pushed the envelope. Public meltdowns echoing down Main Street, activated contingency plans, parental distress -- we kind of expect that [1]. You can see those expectations in a 2010 post on our first trip to a Nordic (cross country) ski resort. Long before that outing there were bicycle rides, crazy outings, stuff I don't know how I did.
Today was in that vein. We took a lovely bike ride on a hot steamy day. There were challenges - besides the the heat our destination ice cream shop was gone, and our water supplies were inadequate. Worst of all, #2 (Aspergers) always drags in heat, and he didn't "wake up" until he'd done 2/3 of our ride. My patience was tried.
But ... that was it. There really were no big challenges. #2, once he got going, finished easily. #1 has become a strong and very safe bicyclist so he sped ahead, stopping only when he thought we might need his uncanny sense of direction to navigate a tricky area. When we were done #1 remembered a sports bar with an outdoor eating area that, he assured us, Kateva would like [2]. He remembered it because E had turned around in the parking lot one day while lost. #1 remembered the name, the location, the patio and probably much more. He does that sometimes. We had no doubt he was right; this is something he's good at. Better than any of us.
We ate together at the restaurant, which was pleased to have Kateva on the outdoor patio. The food was excellent - though Kateva preferred #3's hamburger and #2's meatball to my walleye. When we got home #1did most of the work putting gear away and getting the van in order -- a job that intimidates E. It never occurred to me to ask him, he just did it. Did it well.
We have come a long way. The very bad times, times that predate this blog, are becoming distant, faded memories. I'm glad of that, I'll keep the good memories.
- fn -
[1] I expect scornful stares from strangers too, but I don't notice all that many. It's true I don't pay much attention to bystanders, and I'm kind of obtuse, but, even so, it doesn't happen as often as I expected years ago. I think that has something to do with current urban Minnesota culture; most adults know somebody with a special needs child.
[2] She came along too of course. She ran a bit, but on such a hot day she largely rode in a purpose built dog trailer.
Monday, June 03, 2013
Status June 2013
#1, #2 and #3 (neurotypical) made it through another school year.
By our standards it went well for all. For #3 some encouragement and routine parental attention was needed; I sometimes wonder what parents of neurotypicals do with all their spare time. Joking! I don't know if there really are any neurotypicals, and even an average adolescent can be a heavy challenge.
Managing school for #1 and #2 required rather more effort. That fell largely upon E; a small part of those challenges have been noted here. This is why E and I cannot both work full time; this burden is why so many families of special needs children suffer economic hardship (we are more fortunate). She sometimes pushed, sometimes negotiated, monitored, compromised, met, opposed, allied -- and that was with the school. Then there are the kids.
There is more work ahead, but I've learned not to gather sorrows before their time. We may be wiped out by a meteor before then and the worrying would all be wasted. Instead, for my own benefit, and for those on earlier phases of the journey, I'm looking backwards -- abetted by the serendipitous discovery of an old unpublished post.
Looking back, despite the tenor of posts often written amidst struggle, much has been achieved. Nothing miraculous, more like the seas wearing away rock over years and centuries, still, progress.
#2 was a great fit at age 2-3y to the DSM III diagnosis of autism. Not Asperger's, straight up autism. This year he completed the advanced academic track of his middle school, won a class-leading award, was on the (non-adjusted) Honor role, plays hockey, mountain bikes, road bikes (a little scary that), inline skates (I no longer tow him), nordic skies, swims well (loves the deeps), is learning Python programming this summer, does his chores, and a bunch more I forget. Witty, charming, seems to be liked by his classmates, insightful, a skilled artist, a happy reader...
It adds up over time. There was no ABA in that history, but lots of work and patience and time and chance. He's not neurotypical; there are a lot of things that will derail him, but he's covered a lot of ground.
#1 has more severe disabilities. He won't go to college. He still has trouble making change and calculating analog times; I doubt his reading tests above 4th grade. But he reads! He writes (email and texts)! Heck, at one point we feared he wouldn't speak.
He does baseball, tennis, golf, swimming, hockey, horse back riding, nordic skiing, soccer, mountain biking -- he plays with adapted teams and he plays with mainstream teams (sometimes at the same time). He's becoming a skilled road cyclist -- able to give me a good 2 hour ride even it he tends to stay in 9th gear on the hills. He does his chores and his homework, and he does well editing his iPhone calendar and integrating it with the family Google Calendar. He's getting more lawn mowing jobs, he manages the horses at summer camp. He wants to do high school algebra next year [1] so this summer he'll practice on DragonBox+. We're going to teach him more task, time and schedule management skills so that he can be less dependent on his high school class aides [2]. He no longer gets a timeout/respite every 15 minutes [3].
That's a lot of progress.
Now for the summer ...
[1] Fine with us, I don't think more time on long division will make much difference. He'll work with his special ed teacher.
[2] School aide skills varies widely, as do the skills and interest of the responsible vice principal. We've had some excellent aides, but in the case of #1's year to come we'd prefer to need them less.
[3] It's getting hard to remember how hard those times were.
Sunday, March 17, 2013
Adolescent special needs: Sometimes Judo works
#1 was on track to give up on mainstream hockey halfway through the season. I'd been using carrot and (proverbial) stick but he was dug in and sullen. It looked like he was going to lose one of his best growth and happiness sources, that he was going to drop out of hockey just as he'd dropped out of baseball last summer.
I was frustrated, but I could see I wasn't going to win. Better to lose this battle than to lose our relationship.
So when he challenged me to bribe him to finish the season I pulled a Judo move. I stepped back.
I sat down with him at a time I chose -- when he was at his best. I said that now that he was almost an adult, he really had to make his own decisions. I told him I thought he'd gain a lot from continuing and that it would make me happy, but it was his decision. There'd be no prize or reward for finishing the season -- just his usual post-hockey chips or soda. There would be no punishment for dropping out ...
Well ... I cheated a bit on the last. I didn't want him substituting iPhone-zombie-time for his hockey. So there'd be no computer/iPhone use during times he would have been at hockey. He could read or do other activities [1].
Of course, as you can guess from the post title, it worked. At first he was uncertain, but one night we walked through the season schedule. He picked one late night practice he'd skip and one he'd miss due to a High School sports conflict. (He ended up missing only one practice when I was out of town and we couldn't bring him.) After that review he was relaxed and enthusiastic.
I don't know if it was my talk that worked, or the support of his coaches who also had Special Hockey experience, or if a girl he liked said something nice about his hockey. At his age I'm only one of a lot of influences, and probably not the biggest one.
I was surprised that he did so well; I don't think this would have worked in the past. His mind is developing -- he's starting to have more of a sense of time and of future events, and he's starting to work with abstractions like "promises" and "obligations" and "duty" and "honesty". He never used to respond to 'negative' feedback [2], but now he seems to consider consequences a wee bit beyond the immediate.
I don't want to overstate the changes. A bird in the hand is still worth a thousand in the bush. There is progress though, and reason to celebrate another victory. [3].
- fn -
[1] We have very limited household television access.
[2] Hence our heavy use of positive incentives and extinction rather than the balanced approaches that work for most children. We have a neurotypical daughter, and she essentially raised herself with a minuscule parental contribution. Our #2 is at the Asperger's end of the spectrum but is super-sensitive to feedback. #1 is different. Yes, we snort milk out our noses when we read conventional parenting books.
[3] Our philosophy is to celebrate victory often. So every time we can plausibly declare victory, we do. There should be a name for this philosophy; it results in a lifelong string of repeated victories until the game is called.
See also
- Reading about autism and ADHD - our personal favorites 11/2007
- Changing behavior in children: Kazdin for most and what we do now 4/2008
- Net world and guiding the special needs adolescent - tricky business 3/2013
- Special needs adolescence: separating compulsion from poor choices 8/2012
- Special needs adolescence: enter the unknown country. 8/2012
Sunday, December 16, 2012
Special needs and psychosis: living with uncertainty
A NYT story of psychosis following developmental delay recalls Andrew's story (emphases mine)...
Providing Comfort When a Cure Is Out of Reach - Tara Ebrahimi - NYTimes.com
... Although Takkin had been found to have development delay and fairly severe A.D.H.D. at a young age, he had managed to lead a “normal” life well into his teenage years. He stayed in the school system for as long as he could, participating in work and life-skills programs. He was doing data entry at the airport and held a steady part-time job as a greeter at Trader Joe’s.
His situation was complex, as is often the case for people who fall into the gray space between severe intellectual disability and borderline development delay. He knew he was different from others in their early 20s, recognized that he didn’t really have any friends and that he would never go to college as his two older siblings had. He wanted nothing more than to get his driver’s license. But he was happy at times, especially when he was socializing.
Then he had the dental surgeries, and it was as if a switch in him had been flipped. After a series of root-canal procedures and teeth extractions, he woke up from his final round of procedures and anesthesia, and was never the same...
... we began seeking psychiatric help for what eventually would be referred to as Takkin’s “psychosis” and “delusional thinking.”...
... he was already in the social services system, which in our state consisted of a labyrinthine series of hoops and hurdles and bureaucratic insanity that not even the most educated and competent can easily navigate...
... I came up with a plan of action. And then another when the first plan failed. And another when the second plan failed...
... I drove to the emergency room, where we waited eight hours for him to be admitted to the psychiatric ward...
... it was time for Takkin to leave the psychiatric ward for an outpatient home ... I called a dozen times a day and could never get a response on the status of his anticipated stay, so he never went....
... he was released from the psychiatric ward into my custody, I was unable to reach his case manager at the hospital despite my constant phone calls, e-mails and voice messages, which were alternately kind, threatening and pleading...
Tara tells a story of psychosis developing after low IQ/ADHD cognitive disorder, Andrew's story tells of psychosis developing after Asperger's/autism. Adam's story may add to this tragic set. We have no idea how often this happens; that's just one of the failures of modern mental health research [1].
Tara also describes the disaster of American mental health care. That story has been told before. Recently some have suggested taxing bullets to drive a renaissance in mental health care. We could hardly do worse than we do now.
For us these stories are personal. Our #1 son resembles the young Takkin. He lives in the "gray space", -- he has severe ADHD, cognitive disabilities, and the usual range of essential but near meaningless diagnostic labels. Will he, like Takkin and Andrew, develop a psychotic disorder over the next seven years? Does he, in a sense, have only a few relatively good years left?
We look at him, and we see features of an unnamed syndrome that continues to play out. We see uncoordinated growth, as though his cells were a mosaic of developmental clocks. Small feet, short legs, persistent mandibular growth after maxillary has stopped. He too will need dental surgery.
There is something we cannot name that is ongoing. We assume the same process will continue to affect his brain development over at least the next decade.
How do we live with this? How do other parents of children with short lifespans or degenerative neurologic disorders live?
We live in the moment and in the past. We take photographs of good times. We spend our time and our money to have good experiences for him now, because his future is grimmer than most. Not hopeless, but not particularly hopeful.
We don't spend our time looking for a fix or a cure. We are decades from being able to fix this type of problem. Maybe centuries. Better to spend the time we have building memories.
Being the best we can be.
- fn -
[1] While we known almost nothing of natural history or epidemiology of psychosis with developmental disorders, we have hints like this preprint.
Emphases mine, the research community suspects that our definitions of "autism" and "schizophrenia" are at best incomplete, at worst completely misleading. This knowledge has not made its way into the general psychiatric community.
Expression of autism spectrum and schizophreni... [Schizophr Res. 2012] - PubMed - NCBI
Copy number variants (CNVs) associated with neuropsychiatric disorders are increasingly being identified. While the initial reports were relatively specific, i.e. implicating vulnerability for a particular neuropsychiatric disorder, subsequent studies suggested that most of these CNVs can increase the risk for more than one neuropsychiatric disorder. Possibly, the different neuropsychiatric phenotypes associated with a single genetic variant are really distinct phenomena, indicating pleiotropy. Alternatively, seemingly different disorders could represent the same phenotype observed at different developmental stages or the same underlying pathogenesis with different phenotypic expressions.
... ASD and schizophrenia associated with 22q11.2DS should be regarded as two unrelated, distinct phenotypic manifestations, consistent with true neuropsychiatric pleiotropy...
In this particular small study with a particular autism-spectrum-related genotype, the incidence of psychosis resembled the general population.
I have created an RSS Feed to track research on the relationship between developmental disorders and psychosis.
Friday, August 31, 2012
Special needs adolescence: separating compulsion from poor choices
#1 son is deep in the unknown country of special needs adolescence. He hasn't necessarily added OCD to his ADHD, but there's always been an element of obsession and compulsion in his nature. That's a bigger problem these days.
When I consider the behaviors I'd like to change, I find it useful to divide them into two categories:
- compulsive behaviors
- poor choices
See also (clearly Edna Foa rules):
- Randomized, placebo-controlled trial of exposure and ritual prevention, clomipramine, and their combination in the treatment of obsessive-compulsive disorder... Foa et al, [Am J Psychiatry. 2005] - PubMed (Clomipramine didn't seem to add anything! This article can be freely downloaded and is quite readable.)
- Exposure and ritual prevention for ob... [J Consult Clin Psychol. 2003] - PubMed
- Exposure and Response (Ritual) Prevention for Obsessive-Compulsive Disorder: Therapist Guide (Treatments That Work) (9780195335286): Edna B. Foa, Elna Yadin, Tracey K. Lichner
- Amazon.com: Stop Obsessing!: How to Overcome Your Obsessions and Compulsions (Revised Edition) (9780553381177): Edna B. Foa, Reid Wilson (Amazon's "customers who bought this also bought" list is extremely useful)
- Treating Your OCD with Exposure and Response (Ritual) Prevention: Workbook (Treatments That Work) (9780195335293): Elna Yadin, Edna B. Foa, Tracey K. Lichner
- International OCD (Obsessive Compulsive Disorder) Foundation
- NIMH · Obsessive-Compulsive Disorder, OCD
- Be the Best You can Be: Changing behavior in children: Kazdin for most and what we do now
- Be the Best You can Be: Training exotic animals, husbands and difficult children 6/2006
- CTSA: OCD (Foa's center)
- Augmentation of behavior therapy with D-cycloserine for obsessive-compulsive disorder... [Am J Psychiatry. 2008] - PubMed - NCBI - interesting, but needs replication