As I observed the phenomena that grew for days, I recognized that the term to best describe it is Mob Advocacy. There have been many facets of this phenomena.  I’ll call the three most prominent aspects The Good, The Bad, and The Ugly.

The Good

The best thing about the mob advocacy is that it put a large amount of pressure on the St. Lucie County school district to address the mistreatment of Alex Barton.  Prior to the mob getting involved, it seems that local officials did not take the issue very seriously.  The incident happened on Wednesday, and Alex’s mother appears to have filed several complaints that did not have much impact.  The police and the district attorney did not file charges and the teacher, Ms. Wendy Portillo taught her class on Thursday and Friday as if nothing happened. 

However, on Saturday, a news story ran on a web site.  It was picked up by a blogger with a lot of readers.  Other bloggers posted about it, and others sent emails to get the word out.  A few found the email addresses of the teacher, principal and the school board and published them.  Many sent emails to all of these people as well as the Governor of Florida.  By Monday it was one of the top stories on many websites that have nothing to do with autism.  By Tuesday, the school principal received over 700 hundred emails and the superintendent received over three hundred.  Alex and his mother appeared on CBS’ The Early Show, and Mis Portillo was removed from the classroom and assigned to the district offices. 

The story is far from over, but it appears that mob advocacy resulted in the school district giving the incident the serious attention it deserves. 

The Bad

You’re probably expecting "The Bad" to refer to the hateful remarks that became part of the discussion. I’ll save that for "The Ugly".

The Bad aspect of Mob Advocacy is that while many people played a role in garnering attention there is very little true advocacy we can do.  We can demand that Ms. Portillo be fired, chastise the school district for allowing this to happen, make arrogant statements indicating that we know what the most appropriate school placement is for Alex.  The reality is that this type of advocacy, coming from people who do not know the situation, is hollow.

I don’t know Alex, Ms. Barton, Ms. Portillo or any others involved.  I don’t know what Ms. Barton wants to come from this situation and if I could truly advocate, I’d want it to be for what she wants for Alex.  Outsiders like myself can propose solutions, but in the end, we’re too far away from the details to know what is best for Alex, what the appropriate consequences are for Ms. Portillo, or how to repair the damage of the lesson taught to Alex’s classmates.  After sending emails to the school officials, I emailed Ms. Barton and expressed my sentiments about the difficulty I felt in advocating appropriately for Alex.  I wrote that the best I could hope for was to "give you a little more leverage to advocate on Alex’s behalf."  It’s something, but it doesn’t seem like enough. 

The Ugly

It must be part of human nature that when large groups of people come together, in person or simply uniting behind a cause, ugly things will happen.  Many people wrote horrible things on-line about Ms. Portillo.  Others wrote extremely insensitive things about Alex and autism.  Others blamed the entire situation on Ms. Barton’s parenting.  These people and their comments were a small minority, but they added an ugliness to the discussion that was not needed. 

Bev at AspergerSquare8 wrote a beautifully honest and candid post expressing frustration with the ugliness that began to permeate the dialogue:

“I have made terrible mistakes in my life. I have harmed people. I have done my best to make amends for those wrongs and not to repeat the hurtful actions. I know that if my worst moments were shown to the world, were discussed on numerous sites, some with nearly a thousand comments now, I would not want to continue living. Yet I believe in redemption (not in a passive sense, but through hard work toward change) and I hope that others, including Portillo, do too.

When people start coming to my blog and talking about revenge and sending people to hell, it is time to take a break.”

In encourage you to read her entire post.  She has truly set the tone for continuing the Advocacy, but rising above the Mob mentality.

The binge has it’s roots in many places. The past two weeks with the boys have been incredible. I finally saw X-Men III. Posts that I’ve had in my head since I started blogging over two years ago. Katie. The yearly planning of the parent support group my wife and I run. Emails I’ve exchanged with other parents this summer. A much needed break from focusing on my job. A sense of reflection stemming from an upcoming birthday (A Pirate Looks at Forty-Four).

The first post of the binge goes up before I go to bed tonight, before the pirate turns forty-four.

Shawn’s Top Ten Pieces of Advice for the Wright Family

10. Breathe In, Breathe Out, Move On

9. Remember that the term “Dysfunctional Family” is redundant. For all of us.

8. While I normally welcome events that may slow down the ongoing assimilation of the world by Autism Speaks, family fights are an exception. I’ve seen and experienced family relationships severed, temporarily and permanently, over similar disagreements of principle. The losses are always tragic. Make sure yours are only temporary.

7. Your issues are not much different from any family running a business. The needs of the family and the needs of the business are not always in agreement. When this happens, choose wisely. When you or someone in your family chooses wrong, refer back to item 10.

6. Your 15 minutes are over. Please exit stage right.

5. Money doesn’t buy happiness, and wealthy grandparents can’t always ‘fix’ things. Besides, the most important things to fix are inside ourselves.

4. I’m really glad the New York Times doesn’t consider the disagreements in my family newsworthy. (OK, that one wasn’t advice, but I really meant it.)

3. When it starts to feel like everyone is against you, you are probably your own worst enemy. I’ve been there and done that. Refer back to item 10.

2. The African proverb “It takes a village to raise a child” is dead on. However, don’t stand around waiting for the village to help your child. Instead, participate and help someone else’s child. And fund raising alone doesn’t count as participating in the village.

1. Don’t pay any attention to the advice of bloggers.

I wrote a few posts about some of the difficulties MJ has had over the past several months. While the times have been challenging for me, I know that they are much harder for him. I’ve been working at teaching / coaching / guiding him to navigate his way through the challenges. Some of the solutions require some personal growth for MJ, while others require that we continue to adapt the environment to his needs. Others require careful medication management. All of these require that my wife and I stay on top of our game if we want to make a long term difference.

Parenting has consumed a tremendous amount of emotional energy over the last few months. There’s been very little energy left at the end of the day for either writing or reading blogs. I made a choice to conserve the energy that could be spent talking about autism on-line and instead keep that energy in reserve for parenting. It’s one of the ways that I’ve learned to adapt to the cycles. A wise man named Jimmy once wrote, I’ve had good days and bad days and going half mad days. None of the days last forever but it’s good to have some energy in reserve if needed.

I’ve seen so many changes in MJ over the past few months. While the challenges have been immense, so has his growth. The biggest indication of growth is that he is also learning to roll with some of the cycles. There’s a long way to go, but he is learning. Watching my boys grow is one of the greatest feelings I’ve known.

That’s enough of a rant for now. It’s time to get back to writing. As a wise man named Harry once wrote, All my life’s a circle.

Unfortunately, we don’t consistently use any nicknames so I’ll have to make some up. Since all three boys have the middle initial “J”, I’ll use that as a starting point, but I won’t use their first initial, I’ll use a slightly different abbreviation.

So, I’d like to introduce the boys. LJ (for Large J) is my 20 year old NT son. He doesn’t live at home any more but he’s an important part of the family. MJ (for Medium J) is my 11 year old who was diagnosed with Asperger Syndrome shortly before his 7th birthday. It was his diagnosis that brought us into the world of autism. SJ (for Small J) is my 7 year old who was diagnosed with PDD-NOS at age 4. SJ was diagnosed 8 months after MJ, so by then we were experts (Shawn says with a grin!) I planned on using other letters for initials but realized that Large, Medium and Small is a lot easier for readers to put in context. I like to keep it simple.

Now, onto my next post. . .

• When did our idea of the perfect educational setting become 20 students, all of the same age, placed in a room with one adult with a four year college degree? OK, so we vary the number of students and some teachers have advanced degrees. Still, it’s a pretty narrow model considering the diversity of learning styles people have. Why is this model considered ‘mainstream’?
• I hate the word ‘retard’. I mean, I really, really hate the word.
• There are not nearly enough child psychiatrists in central Connecticut. I expect other areas have the same problem. I can’t believe how often my wife and I hear of families that can’t find any child psychiatrists taking new patients.
• I built a PC for the first time last month. My 11 year old has wanted to build one for a long time. For his benefit, we bought a case with a see-thru side panel and blue LED lights for the inside. He loves making things and if it has lights, all the better. I can also now say that my kids use Linux.
• I want to figure out how to balance privacy with writing about my kids. Maybe nicknames would help. I’m getting tired of writing “my 11 year old” or “my 7 year old”. It sounds so cold.
• Anyone who says razing children with autism is a nightmare has never parented a neurotypical teenager. OK, it wasn’t a nightmare, but there were days when it felt like it. Fortunately, we all keep growing. As of last weekend, I am officially no longer the parent of a teenager. I am now the proud father of a mature and responsible 20 year old. It feels really good.
• In know one particular special education administrator who avoids taking responsibility for doing anything they don’t want to do. The only way to get something done is to put every request in writing. Without it, I can expect little but excuses. I get so tired of writing letters.
• For years, my wife and I have been taking the boys out for breakfast on Saturday mornings. We have a lot of reasons for doing this, one of which is that the local diner is a great place to practice social skills like eating politely, using inside voices and speaking clearly when ordering. My youngest doesn’t always speak clearly and will look at everything except the waitress when he orders. After observing this yesterday, I coached him to aim his voice at the waitress and I demonstrated by moving my hands back and forth between my mouth and the place where the waitress stands. I fully expect that next week when he orders, he will move his hands back and forth between his mouth and the waitress. He’ll probably still be facing somewhere else when he says “French Toast!”
• I received a brochure in the mail for an upcoming autism seminar. Instead of focusing on treating autism, the seminar is about the attitudes and beliefs of the people providing support. I have never come across a seminar with this type of focus. I’m glad to see the dialogue on autism become broad enough to support a seminar like this.
• There’s a lot of ’stuff’ on the internet vying for my attention: Email, RSS, Bogs, News sites, forums. I find it tough to filter it out. That’s one of the reasons for the long blogging break
• There are far too many issues with school transportation. I am stunned at the things that slip through the system. On the first day of school this year, two buses showed up to pick up my youngest and his classmates. We got a call from the van driver picking up my middle son. He asked to adjust pickup times and locations for several days. He called again at the end of the day and asked if we would meet him a mile away from the house because he was running late! Last year, my youngest was not dropped off at his correct bus stop for the first three days. We discussed all transportation arrangements at the PPT but when the bus showed up at the end of the first day and he wasn’t on it, the bus driver said he knew nothing about it, and didn’t know where my son was. The driver didn’t seem to care either. My son got off with a classmate a stop earlier. Yes, we panicked and almost went back to ’special’ transportation. Ugh!! There are too many people involved: the school, special educators, the district transportation staff, the busing company, the bus drivers. No one acts like they are responsible.
• It’s time to finish some of the posts that I have percolating.
• The leaves are changing colors in New England and we saw the first wave of ‘leaf peepers’ come through this weekend. I just love the change of seasons.

Here we go:

1. I married the girl next door. OK, she was really the girl downstairs and we were in our twenties when I rented the apartment upstairs (from her dad, no less). I call this close enough to the ‘girl next door’. As I write this, I’m upstairs and she’s downstairs. We’ve long since moved but some things haven’t changed.
2. In the car, I only listen to AM talk radio and geeky podcasts. I listen to a lot of music but the only music radio station I’ve tuned into years is WMVY. Thanks to the internet I don’t have to to to Cape Cod to listen.
3. I taught myself to use biodfeedback / meditation to cure frequent cases of the hiccups. I figured that if Buddhist monks can do this to lower their heart rate I should be able to control spasms in my diaphragm. It worked the first time I tried it and has been near 100% effective. Since I’ve learned this technique, it only takes me about 30 seconds to rid myself of the hiccups and I don’t have to drink water upside down.
4. The last time my face was completely clean shaven was during Ronald Reagan’s first term as president. I sport the common goatee / moustache combination that is called a Van Dyck.
5. My license plate reads “PRRT-HD”. It was a gift from ‘the girl next door’ when I celebrated A Pirate Looks at Forty day. It came with an inflatable shark, a cheesburger, a margarita and a change in attitude.

I’m not going to tag anyone else, at least for now, because I’m behind in my blog reading and I don’t want to tag someone twice.

I notice that more and more bloggers are using captchas in order to fight comment spam. Captcha is the name for the image of blurred and twisted letters that you must decipher and enter before submitting a comment. They are used because automated programs cannot read the letters (yet!) and if they can’t read the letters they can’t leave comments directing people to adds for drugs and bodily enhancement products.

The problem with captchas is that I can’t read them either. I always think I can read them and then I type the letters and confidently click submit. Most of the time, the program gives me a message telling me I was wrong and that I need to type the letters correctly next time. There are times when I pay extra close attention and am absolutely sure that I read and typed them correctly. I click submit and get the same message telling me to try again with a new set of letters.

I give blogspot.com lots of credit for the design of it’s captcha program. Whenever I incorrectly type in a captcha at blogspot, it gives me a new captcha that is noticeably easier to read. I call it the old guy with bad eyes captcha. It’s kind of comforting that blogspot recognizes me everytime I leave a comment. Now if only I could get blogspot to give me the old guy with bad eyes captcha on the first try, I’d be very impressed.

The Autism Speaks video continues to generate discussion. Much of the response has been negative and with characterizations of the parents that included “whiny” and “selfish”. It’s been in these descriptions that I’ve noticed that something is missing. And before I go further, let me clarify that this post is about the video and the resulting discussion. It is not about Katherine McCarron’s mother.

The thing that’s been missing from the discussion is simple: compassion. Sure the video presented a view of parenting autistic children as particularly dismal. We observed the parents behaving in ways that seem very unsupportive of their children. Many have said that the parents need to stop whining and complaining and get over it because “that’s life.” I completely agree with the assessment that we need to take on life’s challenges rather than letting them get the best of us. However, we also need to recognize that life’s difficult times can include depression, loneliness, and feelings of helplessness that may even be called despair. It includes periods of frustrations, adjustments to those frustrations, and hopefully acceptance. Life dishes up these difficulties to all of us at different times, in different amounts, intermixed with the joy and the happiness. Its best not to judge but to count our blessings for being in a better place.

It seems reasonable that the producers of the video would seek out those parents who were at a low point in the cycle of ups and downs that life dishes out. Its those parents that would exhibit behavior that supports their message. Perhaps the parents were even encouraged to talk and behave in ways that were very different than they would off camera.

We know next to nothing about the parents in the videos other than they are struggling to deal with their child’s autism. My perspective of neurodiversity is that we need to allow room for those that are emotionally strained, people who pessimistic in their outlook, and even those that are whiny. The proper response is to be firm in our own convictions but also offer compassion, for both parent and child.

I know many parents of autistic children who have challenges far beyond mine. Some have spouses that are in denial and unsupportive. Some have families that lay the responsibility for the child’s differences at the parent’s feet. Some have doctors and teachers that tell parents that the problems are all in their head. Many have yet to find a network of people that offer support and are instead surrounded by blame and judgment.

Over time, I hope all parents can provide the love and support that their children need. I also hope we can find compassion for each other during the times that we struggle.

Sports anologies are very cliche, I know. But to me the word coach has such a rich meaning that I’m going to risk overdoing the metaphors.

After writing my post on coaching, I caught up on some blog reading and a particular post got me thinking about how I process the blog writings of adult autistics. I recognized immediately that the coaching anology didn’t fit. However, another came to mind.

I’ve heard stories about young major league pitchers being ‘taught’ by a more senior player. As the stories often go, the senior pitcher doesn’t take on the role of a coach. Rather than giving lessons, or motivational speeches, the senior pitcher simply allows the junior to closely observe all that he does. Rather than saying “Do it this way”, he explains in great detail “Here’s how I do it.” It’s up to the younger player to figure out how to integrate what he sees into his own particular style.

There are quite a few adults with autism that take the same approach as those senior pitchers. They share their experiences, insights, successes, and struggles. As a parent, I find the opportunity to read, listen, and observe to be incredibly valuable. I repeatedly find insights that help me better understand different aspects of autism. I may not not be energized and charged up by the experience, but I’m left with insights that remain long after an energy burst would have subsided. These insights help me better understand what my sons’ experience but are not yet able to describe. I recognize that my sons’ experiences are their own and I can’t expect anyone else to be able to describe it for me. However, I do know that my insight is growing and I have the opportunity to use this new found knowledge it in whatever way I think will help my sons.

To those of you taking the time, effort, and risk of sharing your insights and experiences: Thanks!