When he hit five, we began noticing issues with proprioception. OK, we couldn’t really not notice because MJ had several falls and broke his arm three time in a period of about 18 months. We grew accustomed to the sight of MJ wearing a colorful cast on one or the other of his arms. His last break was a major one requiring surgery and several casts. He chose red for the first one, yellow for the second, and green for the last one. He told us that he picked the colors because they are the three colors in a traffic light, starting at the top, and we recognized that an interest in lights continued to be part of MJ’s personality.

We went about six years without any further breaks, until a week or so ago, when MJ wiped out on his bike when he hit a patch of sand on the street. We had the easiest of 3 trips to the ER this year and MJ is now sporting a bright green cast, chosen in honor of his favorite video game character, Luigi.

This weekend, I installed a new garage door opener. MJ picked it out as he knew the fastest and quietest model based all the ones he’s seen in neighborhood. Because of his arm, MJ couldn’t help much with the installation, but he stayed with me almost the whole time, did what he could, and correctly pointed out several of my mistakes. As work progressed, I could sense his growing anticipation of hooking up new switches and programming the remote controls. He was especially eager to test out the LED sensors that stop the door from closing on someone or something and was very disappointed to find that we didn’t have the correct light bulbs to install. When I finally finished, MJ tested the door about 20 times and, with remote in hand, showed it off to everyone he could find.

MJ’s grown a lot and many things have changed, but in some ways it feels like where we were six years ago. MJ’s in a cast and enjoying lights and switches. Some may look at the situation and feel sad. I find it comfortable and even happy. My wife and I know how to handle broken arms and we can also take a household project and turn it into an activity that brings a lot of joy to MJ. Six years ago MJ simply liked to look at the lights go on and off. Today he’s proudly helping to hook them up and program the electronics. It’s simply a big kids way of playing with the lights and switches.

As David Byrne sang with the Talking Heads: “Same as it ever was . . .”

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.

It’s a start . . .

Don’t get me wrong, the teacher, Ms. Wendy Portillo, should likely be fired for bullying one of her students. Teachers (as do all of us) make mistakes, but this is one that went way too far over the line and caused harm to a student. Yes we all make mistakes, and there are always consequences of those mistakes. In addition to harming a child, the consequences should probably include loss of a job. But read on, maybe there are more constructive consequences.

I can’t put the entire blame for this tragic situation on Ms. Portillo. Based on the limited amount of information in the few mainstream news stories (which I never completely trust to be fair and balanced), I’ve come to the following conclusions:

• Ms. Portillo was not qualified to teach Alex Barton. I draw this conclusion from Alex’s mother’s statement that he spent much of the time in the principal’s office since arriving at school in January. Ms. Portillo was obviously not able to keep Alex in her classroom I consider this evidence that lacked the skills to appropriately teach Alex
• The district’s placement of Alex Barton in Ms. Portillo’s class does not fit the definition of a “Free and Appropriate Education” mandated by the IDEA laws in the US. It appears the district put Alex in an education setting that did not include the appropriate supports to address his “Individual” needs as required by law. I again base this conclusion on the mother’s statement that Alex spent so much time in the principal’s office. If he school placement was appropriate, he would not be spending time in the principal’s office.
• The school district and parents were working on an IEP, but I suspect that it had not yet been implemented. The school district appears to have been waiting for the entire process to be completed, which can take months, before providing Alex with appropriate supports. I base this conclusion on the article’s references that the IEP was being developed but it never stated that it had been implemented. It also appears that the district took the all too common approach of starting by providing minimal services, with the promise that more services will be added if needed. In my experience, with multiple children on the autism spectrum with behavioral issues, this approach is almost always doomed to fail.
• It appears that Alex had “behavioral issues” but there is no evidence mentioned that he had an appropriate Behavioral Intervention Plan (BIP) or anyone gathering data on the antecedents to these behavioral issues. Again I base this conclusion on the article quoting Alex’s mom as saying there were “disciplinary issues”. Discipline is only one way to address behavioral issues and it is often very ineffective for kids with ASDs. I consider a BIP mandatory in these situations as without one, teachers make it up as they go along. The data collected by observing antecedents to behavioral issues and the success of the BIP should be used to make classroom accommodations and adapt the BIP whenever needed.

Considering the lack of support for Alex, and all the responsibility being placed on Ms. Portillo, it is possible that her frustration with being stranded in a situation for which she was not qualified mounted over time and she became exasperated and eventually stepped over the line and harmed a child. She could have done a lot of other things (and maybe she did) such as calling an emergency PPT, calling a meeting with the principal, escalating the issue to the superintendent or perhaps played another card and escalating to the teacher’s union. All could have lead to different outcomes. Ms. Portillo made her choice.

One part of me wants to see Ms. Potillo fired. Her actions justify it. Another part of me would like to see a different outcome, one that attempts to directly address the issues and set a more positive tone for all involved. One encouraging sign is that Ms. Portillo admits to what she did and I see no indication in the article that she tried to “spin” her admission.

Call me naive (and you’d be right), but I like to tackle problems head on and what I’d like to see is the following as an attempt to fix as much of the damage as possible. This will only work if Ms. Portillo’s actions were an act of desperation and not a reflection of innate meanness:

• The parents and the school find some way to get Alex back into the classroom.
• Someone from outside the school with expertise in explaining autism to children is present when Alex returns.
• Ms. Portillo publicly apologizes to Alex and the rest of the class and dishes out extensive amount of praise on the two students that voted to keep Alex in the class. She also admits that she did not know much about autism but is now learning.
• Ms. Portillo explains her regret in not being able to provide Alex the additional supports that he needs.
• The outside individual with experience in autism explains some of Alex’s differences, and the issues in the classroom, that caused him to behave in certain ways.
• Each student in the classroom is given an opportunity to tell the class about difficulties they’ve experienced in the classroom, as well as what they could do differently to make things less difficult for others, including for Alex. I expect an outside expert could be of great help facilitating this .
• If this goes well, the school system provides an intense amount of support in the classroom for the remaining few weeks of the school year.
• The PPT team identifies an appropriate program and placement for Alex for the fall. It may be a different program but, with the above actions, at least Alex stands a chance of leaving this placement on a positive note. He certainly deserves that. The other students deserve it as well.

The likelihood that the school takes this type of approach is very, very low. They’d have to admit they made mistakes which opens them up even further to getting sued. However, if we focus on the kids, Alex and all his classmates, the opportunity to teach the correct lesson becomes smaller with each passing day. If Alex is placed in a different school program for next year, the opportunity it is completely over when this school year ends.

My new heroes are the two students that went against the tone set by the teacher and voted to keep Alex in the classroom. They recognized the difference between right and wrong and voted for what was right by choosing acceptance and understanding. They stood up to their peers and one of the primary authority figures in their life. Describing them as heroes is an understatement. At the age of 5, they are willing to do what’s right in spite of pressure to do what’s wrong. Their parents, guardians, grandparents or whoever is raising these two children are also my heroes. They have managed to teach important lessons about life to five year olds. That’s an incredible thing.

Many people are contacting the school board to voice there outrage against Ms Portillo, and I hope the district is overwhelmed with phone calls, email, and letters. Perhaps Ms. Portillo should be required to stand before the school board while 14 parents of children with disabilities, and the parents of my two heroes, have the opportunity to tell her what they dislike about her. The parents could then vote on whether or not she gets to keep her job and her teaching license.

I don’t know that I’ll contact the school board. I’m more inclined to contact the town and offer to chip in for a parade to honor the town’s new heroes.

Mike Stanton quotes a touching piece of writing in his blog post on this story. In encourage you to click over and read it. It describes how things should have gone in Ms. Portillo’s classroom.

I’ll close by sharing a story that I’ve written about in draft posts, but I don’t believe I’ve ever posted to this site. After kindergarten was over for SJ, one of the mothers of a student in his class told my wife about one of her teacher conferences. The teacher told her that there was an autistic child in the classroom and that her child had reached out to him more than any other student in the class. As the mother told the story, she choked up and thought “That’s what life is supposed to be about!”. She said she didn’t remember another thing said at the conference because nothing else the teacher had to say was as important as the feedback she had already given. I suspect that the parents of my two new heroes are a lot like this mother.

The theme of blink is that our minds are very effective at coming up with conclusions about the world around us in very short periods of time.  In many cases these conclusions, which are often derived subconsciously, are uncannily accurate.  Other times, our minds are influenced by experiences and prejudices that lead us to come to grossly inaccurate conclusions. 

Mr. Gladwell brings autism into his book when he describes situations in which we quickly form conclusions about people and their intentions.  He briefly presents Simon Baron-Cohen’s term "mind-blind" that describes the inability to read the non-verbal cues of others.  He also presents research and anecdotes from Yale psychologist Ami Klin which support the concept.  This material is all presented in the context of several tragic incidents during which he proposes that police officers became "mind-blind".  He postulates that their "mind-blindness" was caused by extremely high levels of stress due to events such high speed car chases or simple personal prejudices that escalated benign situations into something fatal.  He goes a step further and proposes that these police officers ignored lots of input from their environment because of their intense focus on a particular aspect of the situation.  Their focus narrowed so much that some assumed a suspect pulling out his wallet was pulling out a gun and others became became unable to hear what their fellow officers were saying to them.  Many officers involved in shootings report that they did not even hear the sound of their gun fire, although they knew they fired it and observed the results.  

blink’s coverage of autism is certainly superficial, and I admit to feeling some discomfort, almost offense, as Mr. Gladwell described the police officers in extreme situations as being "temporarily autistic".  I stifled my feeling of offense and continued reading because the first three quarters of the book convinced me that the author had some insightful things to say. I gave him some latitude and looked a little deeper for both his meanings and some fresh perspectives.  Fortunately, I found two views that made continuing worthwhile.

The first is that there is an aspect of "mind-blindness" that goes beyond autism.  All people, at certain times, disregard one form of input from their environment in favor of another. We may ignore people’s expression when we are confident that we know what they are going to say or do (even if we are wrong).  Many married women will attest to their husband’s inability to hear while they are reading the paper or watching TV. Most drivers have had the experience of finding themselves "not remembering" a part of a trip over familiar roads because they were on autopilot and didn’t observe their surroundings on that part of the trip.  We are always choosing to focus on certain aspects of our environment and ignore others.  Mind blindness is just one manifestation of this phenomena.

The second thing that I took away from the Mr. Gladwells writing is that we have the capability to improve our ability to make the quick and accurate  conclusions that he describes.  He presents several situations in which people learn to make more accurate conclusions about everything from recognizing fake pieces of art, to being able to predict the success of a marriage by observing a very short discussion between the couple.  In all the situations, people are able to become better at making accurate conclusions through a very simple technique: practice.  If practice can help a police officer distinguish between fear and aggression in a potential suspect, can practice help an individual learn to read nonverbal communication in others?  Based on the large number of autistic adults that have developed skills in this area, I’d have to say yes.  Reading nonverbal cues in others may require a lot of effort and energy for some autistic individuals, but I’ve met many adults that have shown the ability to develop these skills.  All people, autistic and non-autistic, are lacking in some skills.  Depending on the skill and the individual, improvement may be difficult but there is always the potential for growth.  Mr. Gladwell points out that the obvious way to achieve such growth is simply to practice.

My wife and I have considered the family, in general, and MJ, in particular, to be "in crisis" during the past few months.  There have been many meltdowns, numerous self injurious behaviors, and others have been hurt when they’ve been caught in MJ’s unpredictable explosions.  There was a trip to the emergency room during the worst snowstorm of the winter followed by a hospitalization of 2-3 weeks.  Two weeks later we were back in the ER and found that there were no appropriate hospital beds available.  We went home, continued working with a psychiatrist and psychologist and began working with a wonderful new therapist that has been incredibly helpful.

While the time has been incredibly stressful for my wife and I, I know that it’s been much harder for MJ than it is for us.  He’s the one that went through this traumatic period, not knowing how to react to the stresses around him without hurting himself or others.  No matter what we feel, it’s harder for a 12 year old who doesn’t truly understand what is happening around him and to him and lacks the ability to control either.

MJ’s been through several medication changes since the end of last year and we’ve always been a few steps too late in making a change.  On several occasions, the big meltdown occurred within a day or two of making a medication change, telling us we had moved too late.

We made the last medication change a week before a recent trip to Disney World, with fingers crossed.  MJ had the best week he had in months.  The 10 days we were on vacation were even better.  His first week back in school was better than the week before we left.  Things are not perfect, but we’ve gotten MJ to a better place.

Now for the interesting part.  The therapist working with MJ asked him this past week how he felt and MJ replied that he felt "normal".  The therapist was very surprised to hear him say so and when we all met at the end of the session he told us of his question and MJ’s response.  I asked MJ when was the last time he felt "normal" and he said "a long time ago".  I pushed it a little further and he said that the last time he felt normal was in kindergarten, before he had problems in school and was diagnosed with Aspergers.  I was shocked at his choice of words ("normal") and the time frame he used.  His response showed an incredible amount of insight and the ability to connect to emotions from 6 to 7 years earlier was surprising.

We need to explore, over time, what it means to MJ to feel "normal".  At this point, it seems to mean that the level of stress and anxiety is manageable for him and that he is beginning to be comfortable with who he is.  That is a dramatic change from two months ago and I’m happy for MJ that he feels so much better than he did.  I don’t take this to mean that MJ has changed from abnormal to normal.  It’s simply a reflection of how he felt at that time.  There have been ups and down since then and he experiences periods of stress and anxiety that don’t feel "normal".  But an adolescent, any adolescent, let alone one that’s been "in crisis" for several months, saying they feel normal is a rather remarkable thing. 

There have been many so many changes lately, including medication, increased supports, addition of more structured schedules, and increased incentives for accomplishing tasks difficult for MJ, that it’s impossible to point to a single item as the factor in the change. We’ll continue to try to balance all of these because a sense of "feeling normal" is a wonderful foundation upon which to help MJ grow.  It can be the basis for him to to better understand his differences, and continue the process of developing into a teenager who feels comfortable with who he is. 

Being normal and acting normal are overrated.  Feeling normal is where I want MJ to be.

I’ll write a post soon with some tips for those going to Disney with kids on the spectrum but today it’s all about me with Things I Learned in Disney:

• A balance between intense planning and lots of flexibility on my wife’s and my part we’re the keys to setting the kids up for a successful trip.  Without either the planning or the flexibility, we would have had problems.  Come to think of it, that’s not very different than setting the kids up for success at home.
• Disney’s accommodations for guests with disabilities in the parks made a huge difference in our family’s ability to experience the parks and rides (more on that in another post).
• It’s possible for my kids to exceed my expectations.  It was great to be reminded of their potential.
• A good hotel pool has most of the sensory benefits and none of the over-stimulation of a water park.  I was amazed at how much of a positive impact the pool had on the boys.
• While, Disney does a LOT of things to make your vacation a great experience, there are still times when I felt treated like cattle.  I thought of Temple Grandin quite often.  There are so many places that they apply techniques similar to hers: making you feel comfortable, even happy, while waiting in a long crowded line.  However, there’s a lot of other places, where you’re not kept so comfortable.
• Even an introvert like me can have a lot of fun striking up conversations with strangers in line.
• It’s sometimes warmer in Connecticut than it is if Florida.  Unfortunately, that sometimes happens when I’m in Florida.
• I can handle being disconnected from the internet for 10 days.
• Did I mention that I thought of Temple Grandin a lot?
• Lizards are cool and the kids got a kick out of seeing wildlife different than they do at home.
• I need to teach my wife not to make a toast to a great vacation until after we arrive home.  12 hours after she made the toast, we were sitting in an airport, with our flight canceled and very few options for getting back to the airport from which we left. 

We made it home a day late, survived a detour through a different airport and awful traffic in NYC.  We were a little tired but all in one piece. It’s was great to have things go so well after the challenges of the past several months.

Last Thursday, Bruce Springsteen and the E Street Band kicked off their latest world tour in nearby Hartford, Connecticut.  In the middle of the day, my wife called me at work to tell me that her sister has an extra ticket and asked for a ‘permission slip’.  I admit, my first reaction was jealousy.  My second reaction was also jealousy.  I fortunately got my act together for my third reaction and said "Sure." 

I left work early so she could meet her sisters at a 200 year old tavern nearby (did I mention that I was jealous?).  She had no idea where her seats would be but was just looking forward to a fun night out. 

Several hours later in Hartford, my wife was wearing a bracelet for her "seat" which happened to be in the standing room only section directly in front of the stage.  My sisters-in-law kept telling her "Don’t tell Shawn!"

As she worked her way forward, she spotted a youth, about MJ’s age, wearing the same contractor’s hearing protectors that MJ wears in noisy environments.  She also noticed the young man flapping his hands.  His face lit up and he began flapping more excitedly as the band took the stage.  In between songs she struck up a conversation with the boy’s mother who, with her husband, had traveled from New Jersey to bring her son to see The Boss.

As the concert started, mom and dad took turns holding their 11 year old son, mom on her shoulders and dad in his arms.  My wife helped support him on his mother’s shoulders and a fireman from New Haven did the same to help dad bear his weight.  

Early in the show, the boy’s mother tried to hold up a banner.  She struggled trying to get into a position in the front row while holding her son on her shoulders.  A woman standing in the front row saw what was happening and took the banner and held it up for her.  The sign said "Your Music Taught our Autistic Son to Speak, Thank You".  Mr. Springsteen saw the banner, read it, and walked over to the young man on his mother’s shoulders and handed him the harmonica he had been playing.  The younger Jersey Boy lit up and he played the elder Jersey Boy’s harmonica for the rest of the show.  My wife observed a few tears, in addition to her own, and noticed that the people nearby moved to form a protective barrier around the family, making sure they had the space they needed for their son.

OK, I’m still a little jealous, but more than that, I’m touched by the kindness that so many people showed to this boy and his family that night. 

The words from song The Long Walk Home played that night sum it up:

Here everybody has a neighbor
Everybody has a friend
Everybody has a reason to begin again
My father said "Son, we’re lucky in this town,
It’s a beautiful place to be born.
It just wraps its arms around you,
Nobody crowds you and nobody goes it alone

– Bruce Springsteen

I imagine tonight, somewhere in New Jersey, there’s an 11 year old boy happily playing The Boss’ harmonica.   Just a couple of Jersey Boys.

We have had our share of challenges recently.  Many have been related to parenting, but work and health issues have been also part of the mix.  It’s during these difficult times that I find myself reflecting on many things, including marriage and commitment.

I rediscovered a song a few weeks ago that has been resonating with me.  It’s a 15 year old song written by an artist who is not exactly famous for romantic ballads.  However, he writes songs that paint images of life in vivid detail and they often includes pictures of our relationships.

The song is called If I Should Fall Behind by Bruce Springsteen.  The song itself is beautiful and his live performance of it, trading verses with the E Street Band, is incredibly moving.  I’ve seen it performed live and recently rediscovered live versions on CD and DVD.  The recorded performances are as moving as seeing it live. 

So, Lee, here’s a sampling of the song and the thoughts I’m holding onto this February 14th:

We swore we’d travel darlin’ side by side
We’d help each other stay in stride
But each lover’s steps fall so differently
But I’ll wait for you
And if I should fall behind
Wait for me

Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let’s make our steps clear that the other may see
And I’ll wait for you
If I should fall behind
Wait for me

Bruce Springsteen

Let’s keep moving together and waiting for each other.