Your Guest Speaker Has Arrived!

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Liz related that these were the words that Buddy Boy said when he entered the meeting at the school this afternoon. Was this a disciplinary meeting, an IEP meeting, something worse? No. Buddy Boy's principal (who has a special education background) asked Buddy Boy if he would mind talking to a group of teachers and staff about autism. Dr. D. is a fair person who has high expectations from all of her students, and has also gone out of her way to give Buddy Boy the benefit of the doubt in multiple instances when he has gotten into "situations" at school. We will miss her next year when he goes to middle school (for those that are not regular followers of this blog, Buddy Boy is currently mainstreamed in a regular 5th grade class).

Dr. D. had a few lunchtime meetings with Buddy Boy to discuss what questions she was going to ask him in front of the group (things like how he felt about being autistic, what he liked about it, what difficulties it presented, etc.). I'm not sure what the purpose of the gathering was, but it included teachers from all of the district schools, including the middle and high schools. In short, it was a pretty full room.

Now you would think that most people would be a little nervous talking to such a big group. I myself get nervous talking in front of groups, and I teach! For his part, Buddy Boy gets extremely anxious when he does anything with his peers. He WANTS to be involved with them and do things (singing, band), but at the last minute his anxiety is so high that he has a lot of difficulty partaking in performances, even when he is only one of a group of many that is performing. Thank heaven for occasional guardian angels.

But this afternoon, in front of a room full of teachers, he was in his element. Not a trace of anxiety. He stood in front of them, talked for about 10 minutes, then fielded questions for another 10 minutes or so. I suspect he helped their understanding of how autistics think both directly and indirectly (at one point he did one of his 270 degree segues, saying "...speaking of which, if we could harness the space inside of atoms, we could probably come up with a new energy source to help people out").

The audience was friendly and respectful. One art teacher, who had had him briefly as a student 5 1/2 years ago for a couple of months (when we had a really bad experience in Kindergarten) said that she remembered Buddy Boy. Buddy Boy turned to look at her, addressed her by name, and told her he remembered making a "pinch pot" with her. It's amazing the things he remembers sometimes. Another teacher related how when they were covering a unit on caves, that she learned new things from Buddy Boy that she had not known about caves before.

Liz and I both agree that many there were probably surprised that Buddy Boy considers his autism a "gift". He admits that it causes difficulties sometimes, but he definitely sees the upside of being autistic. He came to this all on his own, without us trying to push him in any particular direction. I think it's great that they see such a perspective, so that perhaps some of them will also see the upside of being autistic, and not pigeonhole students with negative assumptions. I also think it's great that Dr. D. sets such a great example to her teachers and staff. She really gets the message out that she wants ALL of her kids to succeed.

I just think it's great that I can write a post regarding school and a meeting, and feel good about it.

Joe

Christmas Spirit, and New Year's Resolution

for some reason Blogger's not letting me post pictures tonight, so no pictures for you

This year the kids are 8 and 10. Sometime soon after last Christmas, Buddy Boy stopped believing in Santa, and ever since then when talking to us about him would make some "air quotes" with his fingers when saying his name. Letting us know that he was big now, and he knew that it was a scam. He promised not to tell Sweet Pea, but of course such promises are hard to keep, and he spent the run-up to the holiday this year in telling her repeatedly that it was just parents.

Sweet Pea has asked several questions, to which we usually just reflected back at her, "Well, what do you think?" With all the logical power that an 8 year old that wants to believe could muster, Sweet Pea came up with reason after reason that Santa had to be real. "I saw it on TV (how he gets down the chimney), he's very fast, and the presents are there with our names on them, so who would have left them?" Buddy Boy has been arguing logic back at her "Why aren't there any sooty foot prints? Parents can eat the cookies we left, how does he get all around the world in one night?", etc.

Coming down to the finish line, I thought she was faltering. "Some kid said that Santa died a long time ago. No one's that fast, and Santa's not G_d. A lot of the kids (even Christian kids) are saying he doesn't exist."

But in the end, wishful thinking won out. She decided that Santa "...must be a ghost. That's how he does it." Of course that would explain everything, I guess. There's no corporal time limit on how long you can do the job, no limit on how fast you can get around the world, etc. I guess I never considered that the "Spirit of Christmas" might actually refer to old Santa himself!

As for Buddy Boy, he came downstairs yesterday and announced to Liz that he "...was going to make a New Year's Revolution". "I think the word you want is 'resolution', dear." "Oh, yeah. A New Year's Resolution. I'm going to be nicer to Sweet Pea this year (he's actually overall nicer to her than she is to him). [he paused] I've got another resolution. I'm going to help Sweet Pea be nicer to me, too."

If only the world worked that way.

Happy New Year to one and all! This last one has been a bit tough (lots going on behind the scenes and all), but I'm hopeful that the coming one will be better. At least we all made it through 2010 in one piece, and neither kid got kicked out of school!

Random Thoughts

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Did you know...

That if you run hot water in the sink and put enough toothpaste in it, it makes the bathroom "smell good"?

That if you put half of a (large) bottle of hair conditioner into the bathtub and stir it up enough, it makes a decent amount of bubbles (the residue is also VERY slippery during dad's shower the next morning)?

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Buddy Boy has discovered that inserting scatological silly references into conversation and using them in a loaded question is very funny-to him-but perhaps not so funny to his teachers.

Last week he asked his teacher something to the effect of "Did you poop in your diaper this morning?", which earned him a trip to the principal's office, and an assignment for him to present something to the class this week on "Respect".

While bringing in the poster that he was going to use in the presentation this week, the principal said good morning to him. He responded "You know, Dr. P, I think I may have discovered that there are some negative things about being autistic. Do you want me to tell you about them?"

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I was driving Sweet Pea to her speech therapist this morning (her "R's" might pass in Boston, but not here, and her inability to properly pronounce "L's" or to differentiate "S's" from "SH's" earns her a weekly Saturday morning at speech (after both she and Buddy Boy have ice skating classes), and her and I doing speech exercises about 3-4 nights/week.

The nice thing about this is we have a little father daughter time to ourselves in the car. Today we were driving along and out of the blue she says "You know, dad, times are hard." First I thought that perhaps my 8 year old had just had an economic revelation. Then I wondered whether she had a twinge of social consciousness, and that perhaps I could be really proud of my little girl. Just to be sure, I asked her "What do you mean?"

"You know, dad, doing times. 5 times 3, 5 times 4."

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Buddy Boy goes to a social skills class every week. Perhaps it's starting to pay dividends. Today he asked Liz, "So, we should have a discussion (I think this was a "homework" assignment). But I don't know how to start."

"Well, what do you want to talk about, sweety?"

"How about machinery?"

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Angels exist, and sometimes show up at the best times.

This last week we had the first 5th grade band concert. As you may recall, although Buddy Boy loves band, the teacher doesn't necessarily feel the same way about him. So although we're very happy that Buddy Boy loves band, we were also both very anxious going to this concert, and hoped to escape the night without Buddy Boy doing something that would give the band leader an excuse to discharge him. We dropped him off in the designated classroom, and went to the gymnasium to wait and fret.

As soon as the band started walking in, we saw his angel. Walking with him was his 3rd grade teacher (who we loved), Mrs. C. Mrs. C always went "above and beyond" when working with him that year. Both Liz and I dared to exhale, and palpably felt 1000 pounds (454 kg) of anxiety fall away from us. The band took their seats, and Mrs. C sat next to (and a little behind) him.

Mr. C (Mrs. C's husband) works with the band (the brass players, not the woodwinds). He was there that night, and though Mrs. C had called in sick that day, she showed up that evening to be with Buddy Boy (evidently she had become aware of Buddy Boy's "troubles" in band thru her husband). We didn't know that anyone was going to be with him on stage, much less Mrs. C.

The long and short of it, Buddy Boy did fine (even if he did talk a bit more than appropriate to Mrs. C during the concert). Buddy Boy even had a brief solo (about 2/3 of the band volunteered to do solos, including Buddy Boy). He played his solo about 3 times slower then we practiced at home, and it was so soft as to be barely audible, but he got thru it without any major mistakes, and did fine.

G-d bless Mrs. C.

Joe

"If That"

Good News! Buddy Boy has decided that he likes the clarinet, and wants to play in the school band. For 5th grade music, students have a choice of either taking a "normal" music class, or participating in the band. Buddy Boy chose the band. He wanted to do this when school started, and he wants to do this now.

Bad News! We came home to find this letter:

"Buddy Boy" is not finding much success in band. He is able to play alone when we do solos, but when the whole group plays, he is not able to focus on what we are doing and participate. He is often taking apart and putting together his clarinet. When he does play with the group, he is overblowing and squeaking quite often. He is probably trying to play louder so he can hear himself, but this causes him to have a poor tone and squeak. "Buddy Boy's" behavior during class has improved and having "Mr. Jones" with him has been helpful.

Our interactions with Buddy Boy's present school have been pretty straightforward, with only a few bumps in the road. Most of the time, his teachers have liked him (the most important thing you can look for, IMO), and have approached any problems with an attitude of wanting to find a successful solution for him.

I suspected band was going to be a problem. The band teacher is a district wide teacher. Not only is she the teacher for the grammar school (up through 5th grade), but also for the middle school and high school. So we're stuck with her for the duration. 5th grade band is (as I stated above) offered as an alternative class for music, not as an elective after school activity. Students attend during regular class hours. When he expressed his wish to join the band, Liz took him to the band leader, to see what she recommended as an instrument. She looked dubiously at him, and stated something to the effect of "I think he'll be able to possibly play the clarinet, if that". We were hoping that Buddy Boy's determination and charm would slowly win her over, but that appears not to be happening.

About four weeks in we got a call that Buddy Boy's behavior was unacceptable. Liz asked if the leader had discussed this with his regular or special ed teacher (she had not). I think she expected us to say "Oh, well, we'll just withdraw him from band." As he really likes it, we're not going to do that. Like most kids on the spectrum, he takes a while to "get" new situations. With a little guidance (and yes, some forbearance on the part of others) he eventually settles in, and does reasonably well. After that conversation, "Mr. Jones" was added as an aide during the class, to help him not be disruptive. No mention ever has been made regarding Buddy Boy's ability to play.

For our part, we took him for some private lessons over the summer, knowing he wanted to play. He didn't learn much music, but started to get a grip on some of the basics (how to put it together, where to put his fingers, how to play scales). We thought he was doing OK. I'm sure he's not the star of the band. But he practices 3-4 times a week, and seems to do reasonably well (he can play several of the songs sent home with him). When I work with him, in addition to having him play at his own pace, I either count or hum, to simulate the rest of the group playing, and get him accustomed to playing on a group rhythm. Most of the other kids have not played before, so it's not like the rest of the group is filled with virtuosos. We can't take him for private lessons during the year. He has about an hour after school where he will pay attention, and that time is used every day by Liz keeping him current with homework and stuff he didn't finish in school. Saturday mornings he takes part in the only regular physical activity that he'll still do, ice skating lessons. We don't want to discontinue that.

In the US, we have laws like the ADA (Americans with Disabilities Act) and IDEA (Individuals with Disabilities Education Act) which theoretically ensure that each individual will be treated fairly, and not discriminated against. But the law is one thing, and attitudes another. And when individuals decide that they don't like your kid, and don't want to "deal" with him, then it's an uphill battle. Many studies have shown that teacher's preconceived notions of a child's intelligence determine whether that child will be successful in their classroom. And it just appears to me that this particular teacher decided up front that our kid just wasn't going to be successful.

I'm not sure how we're going to proceed on this. I don't think they have to keep him in band (they could say he's not working out, he has to take the "regular" music class). So calling an IEP and making demands for them to make it work might indeed backfire. So I suspect we'll talk to his other teachers, and possibly the principal (who has mostly been supportive and understanding), and see what we can do. Somehow I doubt that we'll change the band teacher's attitude, but I'd at least like to see Buddy Boy be able to stay in band this year.

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Apologies for not posting more often. Things have been busy. School continues (I should finish in May!), work is busy, and home has been hectic. Life goes on.

Joe

TV Psychologist Gets It Right

There's been a story going around that I just heard about a couple of weeks ago. Abbie Dorn, a young mother of triplets who suffered severe brain damage due to complications during delivery, is in a legal battle to see her children. Her ex-husband, who divorced her just a year after the event, saying he needed to "move on", has prohibited their three (now four year old) children from visiting her, and even prohibits anyone mentioning her at all to them. Oh, and after she received a malpractice financial settlement, he's reportedly suing her for child support.

Good Morning America covered this story on April 14th of this year, and played up the "tragedy" of the whole situation. It wasn't terrible coverage, but it wasn't too great, either. It didn't really scratch the surface, so was more exploitative than anything else, as far as I was concerned.

On July 10th I happened to catch this story for the first time on CNN. The Dorn story starts about 3/4 of the way down the transcript that is linked here. After going over the basic facts, the CNN anchor went to Dr. Wendy Walsh, a clinical psychologist who specializes in relationships for commentary. I must admit that I am usually biased against talking head TV psychologists. They either seem to a) say something that is so "common sense" that you just go "Duhh", b) try to wedge whatever topic it is into pushing some agenda of their own, or c) come up with some off the wall thing that they couldn't possibly infer from never ever meeting or talking with the principle people involved.

Dr. Walsh's comments both surprised and pleased me. She was both thoughtful and insightful. After the story focused (much like GMA) on whether Abbie could actually communicate or not thru blinking, Walsh immediately cut thru that to comment

And, you know, the question is, who cares if she can communicate or not? There's a living, breathing mother there...Who deserves to see her children. And the children, you know, Don, kids - everything is new and normal in the world of small children. I don't think that they'll be overly traumatized. Would people prefer that they're given a cold teddy bear to comfort them?

Walsh quickly followed with

And, you know, the biggest question this raises for me, Don, is what's going on in our culture that we institutionalize people with disabilities to the point that now we think it's just so wrong to even look at them or be exposed to them? What does it say that we're sweeping away the ugliness and not allowing families to have an integrated experience with people with disabilities? I think it's making us lose our compassion for people with disabilities.

Walsh also blogged on the story on her own blog here, where she also wrote

I’m concerned that the more we insulate people, young and old, from seeing the full range of human possibilities the more we limit our capacity for compassion.

My hat's off to Dr. Walsh. Rather than settle for a superficial recounting of a "tragedy", she cared enough to dig a bit deeper, and provide some thoughtful analysis. Like a good documentary film maker, she challenges us to think deeper not just about this particular situation, but about ourselves and the wider world.

Maybe I should pay more attention to TV psychologists. Or at least this one.

U.S. Seclusion Bill Alert

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I subscribe to the Wrightslaw Special Ed Advocate Newsletter. The Wrightslaw.com website (run by two people named "Wright"-who would have figured), which is a great source for getting/keeping yourself informed with all things having to do with special education law. They also publish a few books, which I have found helpful.

The use of restraints and seclusion in U.S. schools has been a fairly hot topic over the last few years in the U.S. There are at least 3 different (general) views on this. One, that all people deserve basic human rights, and tying them down and putting them into locked closets at school are not the type of thing that should be done to anyone. A second view (we'll refer to it as "the ignorant view", for lack of a better term), thinks that special ed kids shouldn't be mainstreamed with the general population in schools. And if they are, then if they are at all "disruptive" then it is perfectly OK to do "whatever it takes" to preserve peace and quiet in the schools, including tying kids down, putting them in locked closets, or having them arrested. And wouldn't things just be much better if they all just went back to "some other place" to be educated warehoused. A third view is (roughly) that any proposed laws will never do what we think they will do. The bills will just be used to normalize abnormal treatment of the disabled, including instituting/requiring ABA treatment as the "gold standard" of education cruel and unusual punishment.

Federal laws (referred to as "bills" before they are passed) are passed in the U.S. by being voted on by two houses of Congress, the House of Representatives (or just "House") and the Senate. After being signed by the President (or in some cases, even after them not being signed) the bill becomes law.

The U.S. House passed H.R. 4247 (the House version of the bill), and passed it on to the Senate. The Senate version is referred to as S. 2860. Evidently the Senate version would change how student's Individual Education Plans, or IEP's, are administered.

Wrightslaw sent out an e-mail alert today, stating:

The Senate would let school staff put restraint and seclusion in a child’s IEP or 504 plan. Call your Senators now and ask them to reject this proposal.

The Proposed Amendment to S. 2860 Will Take Away IDEA Rights. Unlike IDEA, 504, and ADA, the Restraint/Seclusion bill has been written to prevent parents from seeking to enforce it in with lawsuits.

The new law (S. 2860) would take precedence over the old law (IDEA).

The Wrightslaw alert also included these helpful instructions for taking action:

How to Call Your Senator

1. Always use the bill number, S. 2860, Preventing Harmful Restraint and Seclusion in Schools Act. Please call; Senators pay more attention to calls. Email may get lost. Use Email only if you must.

2. Dial 202-224-3121 (TTY 202-225-1904) or go to www.senate.gov, click on Senators for contact information (including local numbers). You will have 2 Senators. When you call, ask for their Education or Disability Aide. Leave a detailed voicemail message if they are not available. Be sure to identify the bill by name, Preventing Harmful Restraint and Seclusion in Schools Act and use the number, S. 2860.

3. Please call your Senators - but especially if you live in these states on the Senate HELP Committee: AK, AZ, CO, CT, GA, IA, KS , MD, MN, NC, NH, NM, OH, OK, OR, PA, RI, TN, UT, VT, WA, WY. If you are in these states, check the HELP Committee website so you call the Senator on the Committee, http://help.senate.gov/. If you have friends or family in the Committee states, please get them to call. And even if you are not in a Committee state, please call. Senators from all over the country are impacting this bill.

4. Call Senator Tom Harkin and ask for his disability counsel (phone 202-224-3254, fax 202-224-9369). Senator Harkin chairs the Senate Health, Education, Labor and Pensions Committee, http://help.senate.gov/ and has much power over this bill. He needs to hear from parents and advocates from around the country; he certainly is hearing from the other side.

Here is a link to http://www.senate.gov/, which has a nice little "drop down" box on the top right to find your own state's senators, and to the committee page for the Senate Health, Education, Labor and Pensions Committee, http://help.senate.gov/.

Senator Tom Harkin, from Iowa, has always been a pretty good advocate for disability issues. He is also the Chair of this committee. Even if you don't live in his state, I urge you to contact him, and not let this portion of the bill be included.

For a brief overview of how U.S. laws are made, watch this:

Honesty, Justice, and Trust

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I'm not the kind of person that immediately shouts for someone to lose their job when they do something wrong. We all make mistakes, and jobs are hard to come by nowadays.

But I'm also the kind of person that gets their dander up when organizations try to sweep problems under the rug, and whitewash a situation to cover their own backside.

I recently wrote about how two police officers in Tybee Island, Georgia tased a young autistic man who was sitting outside a restaurant waiting for his brother, who was inside. They not only tased him, but wrestled him to the ground, bruising him and breaking his tooth in the process. Originally, the police chief did what might be expected. He defended the actions of his men, and even went so far as to "blame the victim" and his family somewhat by saying that he was sorry that he had been left "unattended". That last statement, which implies that no one with any kind of disability that impairs communication should ever be left alone, even for a few minutes, got me (and a lot of other people, I'm sure) very upset. I don't realistically expect that the whole world will change overnight, and that the world and everyone in it will totally understand my autistic son as he grows up. I also don't think it unreasonable that he should not have to fear being beat up and tased for sitting on the curb outside a restaurant on a hot day.


Evidently there are some reasonable people living in Tybee, and some of them are actually in a position to do something. According to this article:

Tybee drops charges against autistic teen

WTOC11 reports that,

Tybee Island Mayor Jason Buelterman and Schleicher asked Police Chief Price James W. Price to have the GBI investigate the incident and make sure no laws were broken by police.

Many politicians, both local and national, would have followed on what the police chief originally said, and would have tried to cover up the situation and hope it would go away. I applaud the mayor and city manager, who asked a neutral party (the Georgia Bureau of Investigation-the state counterpart to the FBI) to look into the matter. As police officers themselves, the GBI would have an excellent understanding of what proper police procedure in such cases should be, as well as having practical experience in similar types of situations. Yet as a neutral party, they also understand that the public needs to have confidence in its law enforcement officers. Law abiding public citizens should not have to fear their own police force. When law enforcement officers "go too far", it impairs the ability of all other officers on the force in their ability to do their job. When you are in a job that serves the public, you need to be accountable to that public. You may not like it, but that's part of the job.

According to another recent article in the Savannah Morning News, "Tybee Police Learn About Autism", the two police officers that arrested Clifford, as well as a jailer, have both resigned their posts. The police chief has been suspended, and officers are now being sent for training on dealing with people with autism.

My hat is off to the city of Tybee, for stepping up and doing the right thing. Nothing will undo the damage that has been done. Clifford will forever more be afraid of the police, and it will be that much harder for him to react calmly the next time he interacts with them. But it looks as if the city is stepping up, doing what it can to prevent future similar occurrences, and weeding out a few bad apples (while sending an important message to the rest of the department).

I don't know if the police chief will keep his job, or if he should. I am not in a position to know what he knew, when he knew it, and what he has done in the interim. But I trust now that the people of Tybee will do the right thing, because of what they've done thus far. And if he does keep his job, I sincerely hope that he issues a much more heartfelt and all encompassing apology to Clifford and his family, for them having to have endured this.