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.

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

Of course all behavior is a mixture of both, but it's still, I think, a useful distinction. Consider, for example, a man who loses $1000 playing poker in Las Vegas. If he can afford to play and lose, he doesn't have a problem. If he chose to play and can't afford to lose, he made a poor choice. If he was compelled to play, whether or not he can afford to lose, he has a gambling problem.

 

There are ways to change behaviors, but the techniques for changing choices are different from the techniques for changing compulsive behaviors. Most importantly, his choices aren't in play if his behavior is compulsive. Until we address the compulsion/obsession aspects of his behavior we can't work on his choices.

 

So we're studying techniques that have been developed to address obsessive-compulsive disorder (OCD). These fall into two broad divisions: behavioral and cognitive. Because of his low IQ we clearly need to emphasize behavioral therapy.

 

From what I've read so far than means "Exposure and Response Prevention" or "Exposure and Ritual Prevention", which is apparently based on "Pavlovian extinction" or "respondent extinction" (something we're a bit familiar with).

 

Based on my limited readings I'm putting together a plan that we can review with his therapist, and a reading list (below). From the list I can see that if Ross Greene is the guru of the explosive child, then Enda Foa is the guru of compulsion management. 

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

NYT OpEd on Immune disorder causes of autism: extremely suspect

The NYT has published an opinion piece by Moises Velasquez-Manoff claiming that at least 1/3 of autism is fundamentally an intrauterine inflammatory disorder associated with a widespread increase in immune disorders arising from our parasite-deficient modern lifestyle.

The extended essay includes this key phrase: "Generally, the scientists working on autism and inflammation aren’t aware of this — or if they are, they don’t let on."

That's a telling phrase. What we have here is an expansive theory outside the established research community claiming a dramatic breakthrough.

Well, those things do happen - particularly in medicine. I remember prion disorders and helicobactor pylori discoveries; two Nobel prize winning discoveries that were initially radical.

Except this appears to be Manoff's theory, and he's not a scientist. He has a BA in Literature and an MA in science writing. The number of breakthrough insights into long researched disorders delivered by non-scientist non-researchers is essentially zero.

Maybe our lack of a parasites is a problem; I well remember early studies on treating ulcerative colitis with iatrogenic parasite infection. Maybe there are immune abnormalities that correlate with some causes of autism. Maybe intrauterine inflammation, of microbial or other etiology, play some role in brain injury. 

But putting them all together into one package claiming a major breakthrough by a non-researcher? That's multiplying improbabilites. 

The New York Times should never have put this on the OpEd page. 

Ignore it.

Special needs adolescence: enter the unknown country.

To us raising a healthy neurotypical child seems almost absurdly easy. Send them to school, try to avoid major injuries, apply some basic behavioral modification measures, don't do bad things, have fun. It seems more of a hobby than a job.

Except then comes adolescence. Sometimes it's fairly quiet, sometimes it's hell -- even for a neurotypical child. Parenting starts over as the human brain goes through a painful and problematic reboot. Considering what we have learned about the extent of brain remodeling during adolescence, it's astounding that the young male can function at all. It's not surprising that things can go badly.

Special needs adolescence, is, of course, even more complex. It is truly an unknown country; unexplored and unmapped. In special needs adolescence brain remodeling is running against a background of dysfunction and compensation. Even more than neurotypical adolescence, it would be surprising if it went well.

In our case #1 does not disappoint. He is complex and challenging. Our mission therefore is to get through this with an intact family, no jail time, and have him positioned to resume life.

It may be helpful (or discouraging) to share part of his story - at least in the abstract. Imagine, to begin with, a mixture of behaviors from ages 3 to 15. A taste for both stuffed animals and educational web sites (I've learned a lot.) Imagine previous disabilities, but now with new features. So anxiety and irritability ("Explosiveness") remain - but now there are features of obsessive-compulsive disorder. Compulsions and obsessions not only with airport schedules and soccer teams, but also with unearned acquisition and icons of lost childhood. Now add confusions in sexual identity. Next add a growing and well deserved fury at newly recognized limits for independent life, for education, for sexual expression and partnership. Did I mention integration of an exceptionally difficult adoption narrative?

Yes, complex and challenging. Travel, for one, is far more difficult. Just as we would want him to be more independent, he requires even more monitoring. Alas, his guile and stealth belie his measured IQ; our monitoring is not always successful.

It could be worse of course. He's not a threat to himself or others. He's not hitting or biting. He's reasonably good to his siblings and kind to animals. He can still be charming. Alas, going by past experience, things will get worse before they get better.

So, somewhat creakily, we pivot. (Our pivoting doesn't get easier as we wear out.)

Now we need to learn about behavioral management for OCD. Now we need to meet with his psychiatrist and review medications. Perhaps we will need to decrease stimulant use, and consider SSRIs (though he did poorly on them as a younger child). We may ask his therapist to consider family rather than individual therapy, especially since he now likes to engage his younger brother as an advisor and "lawyer" in matters of family discipline.

We can expect some confusion from our consultants; #1 is usually a bit out of their playbook. As always, we will have to come up with our own program, based on bits and pieces from books and experienced therapists and our own experience and judgment.

We will have to map the unknown country as we visit it.