Pushing the envelope does not always go well

Nine years ago a girl drowned in a Minneapolis lake.

That is a sorrowful story that is told many times in many places every year. This particular tragedy, however, had a twist ...

Michigan girl drowns in Minneapolis lake 7/19/2003

 ... A 7-year-old blind girl from Michigan drowned Friday night in Lake Calhoun in Minneapolis while she was swimming with fellow blind children. The girl was with a group of about a dozen visually impaired children from Blind Inc. in Minneapolis. They were off the north beach when lifeguards doing a safety check noticed her missing ...

She was pushing the envelope, doing something many blind people don't do. Sighted kids drown in lakes too, but her risk was above average.

Maybe her parents beat themselves up. Maybe some people thought they were careless parents. I don't know the details, but from my distance I wanted to say to them - forgive yourself. Disability means a full life is often riskier than average -- but all life is risky. None of us get out of this alive. Most us don't want to live in a padded room for as long as possible, we want the best life we can have. We take risks.

So today I took a risk. Nobody died, nobody was even hurt -- but it could have been worse. Seems only fair for me to share a story of an experiment that went off the rails a bit.

It began with a mountain bike outing to the new and superb Lebanon Hills trails. All three did well on the skills section; #1(ADHD, autism, anxiety, low IQ)  bopped through the intermediate stuff without blinking, and #2 (Asperger) was right behind 'em. So we set off on the green trail. #3 (neurotypical) was working through a bit of trail anxiety, so we fell behind the guys. 

So they got bored, and took off on the blue trail. Otherwise known as "the trail of tears", though I didn't learn that name until later.

#1 called to tell me he'd gone off, but I didn't know the trails that well and assumed he couldn't get that far. (I had scanned the trail map, but didn't notice the long, long blue trail on the section I'd studied). Back at the trailhead a cyclicst overheard me talking about the blue trail with #1, and, being a wise stranger, she butted into "my business" (joking there, I was grateful) and clued me in. Meanwhile #1 was getting anxious and agitated and had split from #2, and #2 had run out of mobile minutes while I was pinned down in the parking lot with #3. 

It looked like we were running out of options, but before I could plan the 911 call my helper called in her husband and his friend and they took off down the blue trail at full-rescue velocity. Got to the boys just as an increasingly agitated #1 was going to split for a roadway he could see in the distance. They were all back about twenty minutes later.

So, in the end, pushing the envelope turned out ok. The boys learned some valuable lessons about being lost like "stay together, don't split up" and "stop and stay on the trail" and "wait for Dad" and "if you're lost, choose a trustworthy looking stranger and ask for help" [1]. I learned that I should give #2 son the "tracer phone" [2] on mountain bike trips, and that I should have printed, labeled and distributed maps the night before the trip.

Next time we push the envelope, I hope we'll have a larger margin of error. Meanwhile, thank you Greater Mankata Multisport Club heroes!

[1] Yes, this sounds odd in the world of 'don't talk to strangers'. Surprise -- the risk of approaching a stranger for help is extremely low. The risks are when strangers approach unsolicited, especially in non-emergent situations.
[2] We have one kid phone with a data plan that can be a locator.

A lawyers guide to the high-evidence IEP process

IEPs and Evidence was written by Katie Kelly, a special needs lawyer and mother of two special needs children. It's a more adversarial approach than we've had to take - so far. I recommend reading the original and saving the document. For example:

Prior Written notice. ... The PWN is a procedural safeguard that makes the school put in writing the service or Individual Education Plan (IEP) term you asked for, the data they considered in refusing you that service, and their reason for doing so.  You will not get a copy at the meeting; it will be mailed to you.  It should be very specific.  Warning: the school will make it as vague as possible.  Tell them to do it again using the specifics that you got entered into the meeting notice...

She recomends recording all IEP meetings, optimizing formal minutes, using email to document and clarify all communications and actions, and dedicating a special journal to each IEP. The first two we haven't done and won't start doing until we see more trouble. Email and a special journal are easy to do anywhere.

Sports and athletic participation for special needs students -- and all non-elite students

Recently I reviewed the state of school-based athletic opportunities for special needs students (see also Special Hockey).

The benefits of athletic involvement are clear. They're the same as benefits for neurotypical students, only more so...

1. Kids who are physically active to their personal bounds are happier, sleep better, and are easier to work with.
2. We know the best way to boost a middle-aged brain is to exercise (forget crosswords, get up and walk!). There's good reason to think exercise is good for young brains too.
3. For many of our community team activities, from hockey to cross country running, is the best way to develop social skills and friendships.
4. For some special needs kids athletic activities can become a major part of their adult life -- indefinitely. (We have special hockey players in their 50s.)
5. Special needs kids are just as vulnerable to obesity problems as neurotypical kids.

 It's not easy to make this happen though. American schools are notorious for focusing on elite athletics, to the detriment of all non-elites. It's a big problem, but we can chip away at it.

One area we can manage better is the distinction between CI (cognitive impairment) and PI (physical impairment) events. in our school district kids with autism are technically excluded from PI events (in practice "fine motor deficit" can used to fudge the distinction), but CI options can be very limited even for low IQ autistic kids.

The CI/PI distinction is fuzzy. Many CI athletes have some physical disabilities, and most of the PI athletes I know have had at least a learning disorder. I suspect the division was created when Downs Syndrome was more common, and autism less common (or less recognized). We need to develop a more flexible approach.

Special Olympics has done a good job of adapting to changing demographics of special needs, but the schools might be a bit beyond the curve. On a smaller scale Special Hockey has managed to work with a wide range of both cognitive and physical disability -- all on one team!

In the near term I hope we can generate increased demand for activities from special needs parents, and provide more support for volunteer coaches and managers while learning from Special Olympics and Special Hockey. In the longer term I hope to see a kind of reverse- "inclusion" in special needs sports. What we learn from special needs school athletics may work well for all non-elite students.

Mainstream special education - #1 did a ton of work in last year's world history class.

When I clean out the kid's notebooks I take photographs of selected writings and diagrams. I can't keep all their work, but I can keep the pictures. Today it was time to recycle my son's 9th grade world history notes. That's the course for which I wrote an adaptive textbook in world history, similar to the "human geography" text I'm writing now.

He did a ton of work. I hadn't remembered how much he did, but wow, he worked hard. (We worked hard!). He did that work despite a teacher who, like one of his current teachers, struggled with grading special needs students. If he'd felt encouraged, he would have done even more.

I struggle with this kid a lot. Sometimes things get hard -- and I have to find ways for the two of us to just have fun together [1]. In the midst of this struggle I can miss how much he does.

Yeah, I doubt he retained all that much about China's dynasties, but I think some of it's rattling around in his head. More importantly, he developed some more reading and organizational skills. He reads at a 3rd grade level -- but mainstream 3rd graders don't do the work he did.

Today, in the geography homework I made for him, he evaluated flight paths from Minneapolis to Beijing on a world map and a globe and then compared the results to the NWA web site. I swear I saw a light go off. Later I found our globe near his bedroom.

Mainstreaming is very hard, but it's not a bad thing.

[1] A round of 9 hole golf can go a long way (his sport, not mine). I can't be improving him all the time.

How a teacher can eliminate special needs students

In our schools there are two tracks, the 'gifted' and the other. The gifted track graduates will go on to college, sometimes to very competitive colleges. The standard track graduates are more variable. Some will become teachers and entrepreneurs, others will compete for the shrinking pool of blue collar jobs, and some will struggle in a world that has less and less need of the non-elite.

Special needs students are mainstreamed within those tracks. High IQ autism-spectrum kids may be in the gifted track and may graduate with honors. Low IQ special needs will be in the standard track but will not receive a high school diploma . We have one child in each category.

The standard track is obviously challenging for teachers. Among his or her students will be some gifted kids with quirky temperaments, many average kids, some kids with environmental issues, and the bottom 5th percentile. Some will be labeled "special needs", but in terms of performance and behavior those kids may overlap with the bottom 10 percent. If a special needs child doesn't have obvious physical signs of disability the overlap will be particularly difficult for the teacher.

So how does a teacher grade those students?

If she grades 'fairly' the special needs kids will get a zero on every assignment. So will the low IQ kids who haven't been labeled. If she adjusts grades according to effort there will be a lot of painful judgment calls and complaints. If she grades the special needs kids on their own curve they'll do far better than non-labeled low achievers, which demoralizes them.

In practice the better teachers divide kids into diploma and non-diploma candidates. They grade the non-diploma candidates roughly on effort, and the low achievers on a curve. Their reward for this work is to get more work.

There's an easy out for the teacher who wants less work though. Simply grade everyone fairly. Give the low IQ special needs students the same grade they'll get on Minnesota's special-needs-soul-crushing standardized tests - zero. After a little bit the special needs kids will give up. Their parents will campaign for a different teacher, or the child will get labeled 'EBD' and removed. It's a temptation some teachers can't resist, especially if they feel unfairly treated themselves.

Adaptive texts for Special Needs students - Human Geography

There are almost no adaptive texts for special needs students. This year my son's 10th grade human geography class is using a college text -- which his public school cannot afford to distribute.

Since there doesn't seem to be anything we can buy,  each year I pick one textbook to write. My goal is to help his reading, processing and writing skills. I try to pick a topic that is relatively meaningful to him.

I write the mini-text this by reading study guides and assignments then creating a text roughly at his reading level. I draw on the original texbook, my knowledge of the topics, and 

Last year I did 9th grade world history: http://www.faughnan.com/scans/History.pdf

This year I'm starting on 10th grade Human Geography: https://docs.google.com/document/d/1ruxWv2K0ZjfP8jFv124xV7K_i2yh_HW53D9yD6LBPTQ/edit#. (Not much there yet.)

I'm writing this mini-text using Google Docs which supports easy collaboration. So if anyone is interested in contributing please let me know (jgordon@kateva.org). 

I will probably order a copy of the text, that should help bring my notes inline with the "correct" answers. (Experienced students know the "right" answer is not the best current understanding, it's what's written in the text. This is true of both 10th grade geography and family medicine board exams.)

See also:

• Adaptive textbooks for special needs students
• Be the Best You can Be: Gates Foundation Shared Learning Collaborative - a special education angle? 2/2012
• Be the Best You can Be: High school tips (grade 9) 11/2011

Why transition services are a bit of a mess in many states

From HuffPo (emphases mine)

Special Education Services After High School Uncoordinated, Unmonitored, GAO Finds

... At a recent leadership conference for the Individuals with Disabilities Education Act, Melody Musgrove, director of the U.S Education Department's special education initiatives, said she wants to make services focus on the needs of students rather than the law's technical requirements, according to Education Week. While compliance has been key, the test scores of special ed students haven't improved. So the department decided in March that it would cancel expensive compliance visits to 16 states next school year.

Transitioning out of high school is part of that picture. The current compliance model looks at what students want to do after high school, but not what actually happens. A September 2011 report from the National Center for Special Education Research found that slightly over half of teenagers with disabilities pursued post-secondary education, compared with 62 percent of their peers.

Laura Kaloi, who directs public policy for the National Center for Learning Disabilities said transition planning can help get kids with disabilities on an equal footing with their peers.

As you can tell from the excerpt, the article is a bit choppy. That might just reflect the incoherence of the Federal effort. "Compliance has been key" and "cancel compliance visits"? Looks at what students want to do (play professional soccer) but not what happens (watch TV)?

More importantly, exactly how is any program going to put a young adult with an IQ of 65 on an "equal footing" with someone who has an IQ of 100?

I hope the incoherence is in the journalism, but I fear it's in the policy.

Special Hockey Minnesota: another season begins

It's been six years since Special Hockey began in Minnesota. Now there are teams throughout the state and even into North Dakota.

A new season has begun; this year we'll be doing more advanced skill development. A year or two ago we were the national champions. Susie and friends have put together a pretty good program.

Even after 6 years of it, I'm always a bit amazed that it works. The range of players is astounding. One team has a gentle forward who's 6'8". We have six year olds. Girls, boys, women, and men. We have players who are minimally verbal and players with Aperger's who take advanced study classes. We have chair bound players pushed by aides, and players who've played mainstream hockey.

There's been a lot of progress over the years. Even players with significant motor disabilities often learn to skate. Some players have joined rec leagues. Others have used benefitted from a supportive environment to learn flexibility and adaptability.

There are many similar opportunities in Special Olympics, but for us this activity has worked extremely well, and we include many players who would not be SO eligible.

It's a movement worth supporting.