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.

Apple's iOS 7 is a big improvement for special needs community - parental controls that work

It hasn't gotten much attention outside of some Christian conservative and geek blogs, but iOS 7 has fixed the longstanding parental controls webkit hole. I first wrote about this problem back in August 2010, when I was particularly enthused about the benefits of iOS for #1 son's use.

That enthusiasm was muted by years of struggle with adolescence, impulse control, and the webkit access flaw he exploited mercilessly.

Now, with iOS 7, the struggle appears to have ended. With my permission #1 attempted, vigorously, to bypass the new controls. He failed, indeed he has had to sheepishly ask me to grant permissions for webkit holes I didn't know about [1].

In addition Apple has done some magic to deal with technical issues related to https use that have completely broken parental controls on OS X Mountain Lion. Today Safari on iOS 7 is much more useful for #1 and #2 that it is on Mountain Lion.

iOS 7 is buggy, and does run somewhat slowly on old iPhone 4 hardware, but this one improvement is more than worth the cost.

[1] Example: In MLB baseball player stats display uses embedded webkit, and so they are a potential avenue to the unfiltered net.

Update 11/29/2013.

Siri: "Show me pictures of dogs". Shows dogs.

Siri: "Show me pictures of xxxx"....

You have to disable Siri, there are no parental controls there. I wonder sometimes if we need a different kind of IQ testing for #1.

Special needs and population health management

Buried in a discussion of improving care of patients who spend a lot of time in emergency rooms, and who cost health care systems a lot of money, is a very interesting phrase

Practicing Award-Winning Population Health | McKesson Better Health

... HCMC decided to open the Coordinated Care Center after its internal studies showed that 3 percent of its patients were responsible for about half of its total costs. To ensure a focus on those high-cost patients, the care center has admitted only patients who had been hospitalized at least three times in the previous 12 months.

... HCMC realized that drug use, homelessness, mental health issues and cognitive impairments are “the kinds of things that fuel super-use,” he says, so it structured the Coordinated Care Center around multidisciplinary teams that include not only doctors but nurse care coordinators, social workers, behavioral health workers and drug abuse counselors who “work together on the underlying problems.”...

Drug use and homelessness are always included in discussions of health care costs, but I do not recall ever seeing mention of cognitive impairment, and of programs specifically targeting cognitively impaired adults who are seen in emergency rooms.

I'll be tracking this.

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.

Special Olympics Minnesota has a summer sports camp

We've always known of the great Special Olympics sports opportunities in the Twin Cities, but until this year we had too many other activities going on to participate. This year though #1 wanted to start playing tennis, and, as it turned out, Special Olympics was a great way for him to start (he won state in his division - gotta brag for him).

Despite his tennis participation we didn't know of  the basketball, tennis, flat football and bowling summer camp that just passed:

Summer Sports Camp | Special Olympics Minnesota

June 12-15, 2013

St. Olaf College, Northfield, MN

Training will be offered in the sports of basketball, bowling, flag football and tennis. The daily sports training will be complimented with afternoon and evening activities, which will include recreational sports (bocce, ultimate frisbee, volleyball, etc.), arts and crafts, bingo, a talent show, movie night, a dance, ALPs night, and many more fun activities.

$325 per camper; includes room and board, meals, facilities/training fees and camp T-shirt. (scholarships available)

We heard about this overnight camp from a MN Special Hockey Eagles teammate. The price must be heavily subsidized, and there are scholarships available.

The 2013 application isn't online any more, but I found a copy. In 2013 the application deadline was June 1.

Next year we're hoping to get several Eagles to attend. 

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. 

One day autism may be treatable

It's good that some researchers are asking these questions ...

 Progress toward treatments for synaptic defects in autism. Nat Med. 2013 Jun;19(6):685-94

Delorme R, Ey E, Toro R, Leboyer M, Gillberg C, Bourgeron T

... There is currently no cure for ASD; however, results from mouse models indicate that some forms of the disorder could be alleviated even at the adult stage. Genes involved in ASD seem to converge on common pathways altering synaptic homeostasis. We propose, given the clinical heterogeneity of ASD, that specific 'synaptic clinical trials' should be designed and launched with the aim of establishing whether phenotype 'reversals' could also occur in humans....

In other words, we seem to be able to make adult "autistic mice" better, so maybe we can make adult humans "better", hopefully with a different outcome than Flowers for Algernon. To put it mildly, this will be a long and tricky road. 

My #1 is 16, so it's not impossible that sometime in his life, depending on his particular neurobiology, there might be a medication that might, among other things, increase his IQ score.

It won't be in the next 20 years though. 

My son learns algebra on his iPhone via DragonBox

Friggin awesome.

That's what I got from the look on #1's face when he solved an equation with x on one side, and a numeric expression on the other. He was doing algebra, he knew it, he was proud.

Damn, that was the best $6 I've ever spent.

#1 is entering 10th grade next year in the special needs modification program. He reads at about a 4th grade level (perhaps less) and struggles with basic arithmetic and time calculations. Despite years of practice he can't do long division by hand. Despite this reality, he declined the standard transition programs for a regular junior high academic schedule -- though we worked him down from three languages to one.

Algebra is one of the items on his junior high dream list. That seemed reasonable to me. We weren't getting anywhere with our old arithmetic drills - he was bored and frustrated. Further progress will require years of slow practice on real world problems, and use of his iPhone calculator. Seemed a good time to try something different. So, for his summer homework, we decided to try DragonBox, a French-Norwegian iOS/Android/Windows/OS  X math "game" we'd used with my daughter on an appnetizen's advice (Thanks Jonathon!).

He's been doing it for summer homework several days a week. Sometimes he'll randomly flail at it until the problem is solved, but watching him I could see something else developing. Something that perhaps played to his near-savant visual processing strengths. With DragonBox he was learning negation, reduction, balanced operations, add zero, divide one - basic algebra. A little bit of progress every day - on his iPhone, as a game.

Today he got to the level where the graphical icons were replaced by numbers and variables. When he solved the numeric expression he blushed with pride and joy.

That's worth $6 I'd say.

Now we'll work with transferring these skills to paper. I will do paper operations in parallel with his app operations, then see if he'll replicate on paper what he does in DragonBox (step-by-step), and so on. Maybe it will work, maybe it won't, but in our family we believe in declaring victory early and often (and so life is an unending series of wins, until we die).

I've bought the high school version of the app for #2 and #3 - and I'm following the We Want to Know team's blog.

See also:

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Status June 2013
• The end of High School, the end of dreams: transition hardness
• Apple's iPad/iPhone App store has a special education section: It's still there
• Math fact drills for an Asperger's child - two excellent solutions: worked well to a point.
• Be the Best You can Be: Judo moves on an atypical mind: Plan iMac: 1/2010. This one worked ok, but he mostly uses the Learning account when he can't have phone time.
• Different minds, Different paths: 10/2009. I'd forgotten how well he did with the game "rush hour".
• Adolescent special needs: Sometimes Judo works 3/2013

Your child has autism. Now what?

I write this blog to help other parents and families, but I also write it to record my own notes and ideas. It's a reference for me. Today, while looking for another post, I found an unpublished draft from around 2004-2006. It was an ambitious post - intended to be a guide to parents with a newly diagnosed "autistic" child.

I never got past the introduction and an outline of topics. Rereading it today, I think it's still worth sharing. Some of my thoughts have changed, but I mostly agree with my old comments.

I suppose if I got enough requests I could fill out the topics, but really this could turn into a book I don't have time to write.
--

Our personal experiences mean that we are sometimes asked to do an autism orientation. I'm writing this post as a kind of mini-orientation that I can point people to, as well as using it to index some site references. I'll update it periodically, though most of the changes will be over the next few days. 

Before I begin, I need to state my biases. I write from a skeptical, technical, scientific, evidence-oriented perspective because that's my natural disposition. This means I spend little or no time discussing thimerosal, immunization, very poorly defined syndromes, etc. I have a lot of sympathy and empathy for families who pursue "alternative" therapies, but it's not what we do or write about. That doesn't mean we don't try things that have very limited evidence (such as "sensory integration" treatment), but we have modest expectations, we demand a very low risk of harm, and we look for empirical evidence of benefit. This doesn't always thrill the therapists, but that's tough. 

I think one starting point is this post and the article it links to: Welcome To Alaska. The Wikipedia article on autism, at least for today, isn't too bad. It's likely to be periodically afflicted by strong beliefs that lack evidence, but it should be relatively easy to spot those and read around them. 

The term "autism" is like "dropsy" in the 19th century -- a generic term used because we don't really understand what's going on. "Autism" is applied to children who are probably afflicted by a variety of brain dysfunctions and a wide range of healing adaptations. There now thought to be at least 6 major gene associations [that was 2006 or so] and there are probably many more. [2013 - many, many, many more]

For example #2 has the diagnosis of 'classic autism' but he has an above average IQ and does many things very well. He's quite verbal and reads well. 

#1 has a diagnosis of 'autism spectrum disorder' and is like #2 in some ways, but not in many ways. #1 has a much lower IQ, struggles to read and has far more behavioral problems, but has quite decent athletic skills. 

Almost all autistic children will tend to be rigid and prone to tantrums, but some are extreme cases (these tend to get more attention and may be difficult to care for at home) while some are not really all that hard to manage. #1 stresses our limits, but #2 (the autistic one) would probably not be too much parenting work if he were an only child. [2013: He got to be more work as he got older :-)]

It's very hard to generalize or predict about course or therapy. There are lots of strongly held opinions about therapy, but not all that much science. We've followed a 'moderate' path informed by professionals we trust, the research literature, and our own observations of both of our boys. 

We try things and see what happens. Often I'm surprised by what they can do. The very scanty scientific literature suggests that even with almost no professional intervention many children with autistic like features are much better as adults. It can be very hard to connect with the excellent therapists and it may be worth joining one or more waiting lists now. E may have ideas on therapists, but given our backgrounds and situation we've tended to rely more on domain specialists and ourselves than a general therapist. To put it a bit crudely, we're the 'general contractor' for the boys, and we hire out the specialty stuff.

The original ends with a list of topics I wanted to cover. The comments below are from the perspective of 2013:

• Autism society of America: A good organization, but less useful for us than I'd expected.
• Personal care attendent and IEP and state/county aide: Wow, we spent years trying to make aides/PCAs work. In the end we realized the PCA system was a poor match for our needs.
• Temple Grandin books: It's useful to read 1-2 to get a feeling for a different mind, but she's no more like our boys than they are like us.
• Financial planning: Complex!
• Our book case, of which I took this picture way back then:

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.