Call Me Ishmael

Summer is a great time in our house. Mostly because school is out. There's no waiting for dreaded phone calls, no worrying about academics being shunted aside in favor of watered down "make work" or "compliance", and little worry about increased stress levels (for all of us).

Summer is a time of tending the garden, kids going to camp, taking a vacation (holiday), and neighborhood festivals. Academics aren't totally left behind, but they're done on our schedule and in light of our kids' needs, not on the school system's. Liz does a yeoman's job of making sure the kids read (and get read to) each day, and filling the gaps of things they didn't quite get during the school year. She's even found kids versions of classic books for them to read.

Buddy Boy struggles somewhat with math, and Liz has systematically investigated how he processes math problems, and come up with some novel strategies to assist him. After months of failing to be able to memorize basic multiplication facts (e.g., 6 x 6 = 36), Liz found some workbooks that use stories and rhymes to assist in memorizing math facts. They seem to be working.

But studying is pretty low key, and the kids don't seem to mind a couple of short sessions each day.

So what did we do today, when temperatures topped out at 98 degrees Fahrenheit (36.7 Celcius)? Stay inside, crank up the air conditioning? No way. There was a local carnival in a nearby park, and the kids kept asking to go.

We didn't stay all that long (it was pretty hot, after all), but the kids had a good time. Afterwards, we went to a local ice cream parlor for another time honored rite of summer.

Sweet Pea had a little trepidation about tackling the ride pictured above (you sit in a seat that goes around and around in a big 50 feet vertical circle), but eventually said that she wanted to do it. Although she looked a bit scared when it started up, by the end of the ride she loved it. Buddy Boy went with her, and provided moral support.

Buddy Boy's also been working on jokes lately (everything from "knock knock" jokes to puns). Sometimes they're funny, sometimes they're not, but he's getting much better overall. When he got off the ride, he walked up to us and said very seriously, "Call me Ishmael". We just had to laugh.

Dignity

So I was watching TV this week when this ad came on. After it became apparent that it was for a charitable organization, I expected to see some variation of the usual "pity party" that is all too common amongst many charitable groups. You know, "Aren't we great that we are helping these poor, helpless people thing. Instead I saw this. This is not my congregation, but I invite you to watch an alternative way to depict serving others in society.

Wouldn't it be great if groups like Autism Speaks took such an approach?
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"Dignity"
Trinity Lutheran Church
Volunteers serving the homeless
First course: dignity

Read the story behind the ad.

I Can See Clearly Now

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Q: What makes a third grade boy want to sit at the front of the class?

A: He needs glasses.

After getting some hints that Buddy Boy needed some assistance (mis-reading the board, asking to sit closer), we took him to the eye doctor. He actually was both quite fascinated by, as well as cooperative with, the whole process.



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After being shown several pages in a book similar to the above and correctly identifying the numbers he announced "At least we know I'm not color blind." His vision isn't that all bad (it's between 20/30 and 20/40) but since he's having some difficulty with schoolwork we decided to go ahead and get him the glasses. He'll have the whole summer to get used to them, so they'll feel natural by the start of next school year.

So far things seem to be going all right with them.

Meanwhile, now that he's seeing a bit clearer, he's also seeing autism everywhere. Or at least some places it probably isn't.

Buddy Boy's teacher's husband is also a teacher at his school. He teaches music, but not Buddy Boy's class. But Buddy Boy knows him because at the end of the day he comes to Buddy Boy's class to wait for his wife. While he waits, he usually uses the computer, and trys not to get in the way.

Evidently Buddy Boy has decided that Mr. L is autistic. He told his teacher, Mrs. L, this last week. "Why do you say that, Buddy Boy?" she asked. "Well, he spends a lot of time on the computer, doesn't answer my questions when I talk to him, and sometimes is a little grumpy." Mrs. L just replied "Those are interesting observations." Now Mr. L is a quiet guy, but I hardly think he's on the spectrum. But since Mrs. L didn't out and out deny that her husband was autistic, Buddy Boy took this as affirmation.

So this week Mrs. L is appropriately laying down the rules for Buddy Boy when he wasn't doing something he should, and he comes out with "Mrs. L, since you are married to someone who is autistic, I would think that you would be a litte more understanding of me!"

Two more weeks until school is out for the kids! We're counting the days.

Just Claim They Were Autistic

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In a story on the wire yesterday, a man in Salem, Oregon was arrested and jailed after shocking his four children with a shock collar meant to train dogs. According to the story

"Todd Marcum, 41, said he did it "because he thought it was funny," Salem Police Lt. Dave Okada said. ...

Marcum was taken into custody on four charges of first-degree criminal mistreatment. He is in the Marion County jail."

Now if Marcum had had a lick of sense, he would have just told the police that he thought his children were autistic, and needed some training. Because he had been on the internet, and he knew that the Judge Rotenberg Center uses shocks to control autistic kids. And it's perfectly legal. Other states even send their autistic kids to Massachusetts to the JRC so they can be shocked, too.

Marcum could have stated that his children were swearing, nagging, or flapping their hands, and thus qualified to receive shocks.

Now the only problem is that the dog collar that Marcum used was probably a lot less powerful than the one that is routinely used at the JRC. The dog collar is a small, self contained unit, while the JRC devices need a backpack to haul around. The dog collar will stimulate for up to a half second, while the "GED" devices used by the JRC will shock you for up to 2 seconds.

I found out while poking around that dog collars are subject to legal regulations, which state (amongst other things) that they can be applied for no more than 12 hours in any 24 hour period, and they can't put out more than 15 milliamps root mean square. The JRC uses devices that put out an average (not maximum) of 15 milliamps RMS, and a maximum of 45 milliamps RMS (fully three times as powerful as the maximum allowed for a dog collar).

So Marcum, if you or your lawyer are reading this, just claim you were using a tried and tested method of disciplining your kids, who you suspect are autistic (don't forget the autistic part-people might not approve of your behavior otherwise).

Perhaps the Massachusetts and New York legislatures would be interested in the torture by electric shocks that is occurring if there were dogs that were being shocked. Because they haven't been interested when it was only autistic individuals involved.

Where the Rubber Meets the Road

The organization ADAPT staged a non-violent sit in at the Whitehouse today in Washington, D.C. For those of you who aren't familiar with ADAPT, it is an organization that advocates for the civil and human rights of the disabled.

This protest was in support of the CCA, or the Community Choice Act. If passed, this act would provide much more support for the disabled to live in their own homes, instead of being shunted into institutions (both large and small).

The current administration has talked a lot about support for the disabled. It's time to see if they're willing to support their words with action. It will take spending some political capital to get lawmakers to sign onto this bill (the disabled, being mostly invisible to lawmakers, are not seen as a significant part of anyone's voting base). Today's action raises the visibility of the disabled, and may be the nudge that lawmakers need to actually act in their constituents best interest.

Instead of having the money flow to people through big agencies and big institutions, the CCA would allow more of the money to follow the individual, such that they could procure assistance in their own home, and remain independent and integrated into their own community.

If you're in the US, contact your own legislator and urge them to pass this bill. For your Senators, the bill number is S. 683. For your House members, the bill number is H.R. 1670. If you're having trouble composing your thoughts, you might want to refer to these talking points that ADAPT has gathered together.

Spring has Sprung

photo credit-Dan Zen
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Yesterday it was about 75 degrees Farenheit (24 Celcius) in the lower Midwest. The sky was blue and clear, there was a soft breeze, and no humidity. In short, it was a perfect day. I happened to get out of work early, and treated myself to a late lunch on an outdoor patio of a nearby restaurant.

Today I noticed all sorts of flowering plants, bushes, and trees springing up all over the place. Lillies, redbud, dogwoods, and one of my favorites, the forsythia shown above. The forsythia always seems to just start to peak around Sweet Pea's birthday, which is coming up shortly (she'll be 7).

I'll always associate forsythia with Sweet Pea, as this riotous yellow flowering bush was in full bloom when we went to attend her birth in the city she was born in, and fully in bloom a few weeks later when we brought her back home.

Somehow the explosive, in your face color that screams "Notice Me!!" and "I'm So Cute!" seems thoroughly appropot of our daughter. Sweet Pea is always full of energy, and she is always noticed when she enters a room (whether you'd like her to be or not). Although Sweet Pea is often a bit too loud, a tad too competitive, and a bit too demanding at times, I love her spunk. She has the drive and determination that, when harnessed a bit with maturity, will serve her well in life.

Although a lot of my blogging has to do with Buddy Boy, I just wanted to take a minute and give my second child (the one who I tell every night "You're my favorite girl in the whole wide world") a little bit of ink, too. I can't wait to see what both of my kids grow up to be.

Thinking Outside the Box

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There are two old sayings that come to mind when I think of seclusion rooms. One's an old Japanese saying-"The nail that sticks up get's hammered down." The other one's a saying that's commonly used in surgery-"When all you've got is a hammer, everything looks like a nail."

I think that both of these principles have come to govern the use of seclusion and restraints in special education. For too many years, in too many places, children who have occasional outbursts in schools have been seen as disruptions, nuisances, drains on resources, undisciplined, bad, and generally problems to be controlled. And the tools that have been most often resorted to to remedy the situation have been the ones seen to be most expedient-the use of restraints and seclusion rooms.

It was recognized over 50 years ago in psychiatric hospitals that use of seclusion rooms and restraints increased, rather than decreased, the incidence of behaviors. Why, then, does the use of these rooms persist into modern times in schools?

People must use them because they believe it's the best alternative. But what leads them to believe this, and what are the real facts?

In a monograph written for the Council for Children with Behavioral Disorders written in 2000, Michael P. George, the author and a special educator, refers to potentially damaging assumptions that he believes are present amongst special educators are the following:

Children with emotional and behavioral disorders (E/BD) come from bad homes, and since we cannot change the homes, we cannot succeed with the children in our schools.

Children with E/BD are incapable of controlling their behavior or regulating their emotions, and it is up to us, the professionals, to control them.

Most children and youth with E/BD are so aggressive and violent they can be educated only in very restrictive settings.

The more serious the misbehavior of the children and youths under our care, the more intrusive and severe our methods must be in treating them.

Seclusion time-out and physical restraint are necessary interventions for the most serious and intractable of these youths.

He then asks the obvious question of how those beliefs guide practices and methods, and concludes that many in the field accept the use of seclusion and restraints because they are believed to be effective. Meanwhile, the obvious side effects of using violence to treat violence (anger, resentment, fear, resistance, feelings of hate, and even death) were being ignored.

George then describes how the culture of the school was changed, which resulted in a year to year difference of a decrease in the use of physical restraints by 69%, and a decrease in the number of minutes spent in seclusion by 77%.

Ryan et al., in an study entitled "Reducing the Use of Seclusion and Restraint in a Day School Program", describes how

The majority of students placed in seclusion during both school years came from elementary and middle school. High school students were rarely placed in time-out during either year (10.7% and 12.4% respectively). Restraints were also performed much more frequently among younger students during both years. During the 2002–2003 school year, the preponderance of all restraints (80.9%) were performed on elementary students. Students in middle school were much less likely to be restrained (14.7%), while high school students rarely (4.4%) experienced this procedure. During the second year, the elementary grades still represented the majority (67.9%) of all restraints performed, while no restraints were performed on high school students.

The median age of those placed in seclusion was 13, while the median age of those restrained was 8, even though the study group included children up through high school (approximately 18 years of age). He attempts to explain these findings thru positing the following possibilities:

1. their possessing fewer mechanisms for coping with frustration,
2. staff may believe intrusive procedures may be more developmentally appropriate for younger children, or
3. that staff may be apprehensive to perform these procedures on larger and stronger individuals.

Whatever the reason, it seems apparent that it's generally considered OK to restrain and abuse kids in special education, especially when they're young.

Dr. Stuart Ablon, Associate Clinical Professor of Psychology at Harvard Medical School in Massachusetts (yes, the same state that houses the Judge Rotenberg Center) is the Director of a program called "Think:Kids" in the Department of Psychiatry at Massachusetts General Hospital. This program espouses collaborative problem solving (CPS) with kids who have behavior problems, instead of the use of restraints and seclusion rooms. As one might expect from the name, CPS helps kids and adult caretakers work together to resolve problems in a mutually satisfactory manner. They try to identify specific cognitive skills that individuals lack (executive skills, emotional regulation skills, social skills, etc.) and find ways to teach them.

Unlike the assumptions cited above that special educators often have, they teach a different approach based on respect and collaboration. This approach was first laid out by Dr. Ross Greene in the book "The Explosive Child". Dr.'s Ablon and Greene collaborated on another book on the subject, "Treating Explosive Kids". While I'm not too wild about the use of the term "explosive" in the titles of these books to describe kids (are they about to literally blow up?) I am all for the philosophy and recommendations they make in their books.

I've referred before to how Ange is working hard at a grassroots campaign in Missouri against the use of seclusion and restraint rooms. If you haven't stopped by there before, please do and lend her some support. If you haven't signed any of the petitions below, then I would suggest that, too. And if you haven't written or called your lawmakers lately, remember that it might make a difference.


http://www.thepetitionsite.com/takeaction/831847137

http://autism.change.org/actions/view/end_the_use_of_aversives_restraints_and_seclusion

http://apps.facebook.com/causes/173391/22317452?m=b9452798

Let them know that there is a different and better way to treat our kids then seclusion and restraint.