Recovery is a powerful concept for me. The word itself evokes ideas of struggling against powerful forces such as addiction or cancer. It makes me think of extremes from the relatively simple recovery from a broken bone, to the more life-changing recovery from losing a loved one to death.

The past year has been full of relapses and recovery for me and for my family. We found ourselves in the midst of crises without a clear path out. We faced decisions that I once considered unthinkable. Nonetheless, we have come through intact. I look back at this period with thanks and gratitude yet still surprised at how long recovery can take.

The Relapse

A little over a year ago, MJ hit what would be mildly described as a “rough spot.” It would be more accurately described as a challenge so significant that it put all of his intellectual, emotional, and social development at risk.

It would take a long time to fully describe the issues MJ faced. Professionals used a variety of labels to but I prefer the simple description: “major difficulties with emotional regulation.” While we saw similar issues in the past, the severity and longevity of the challenges were what placed MJ at such a high level of risk.

MJ, somewhat suddenly, appeared to lose most abilities to cope with any emotional stresses. Many of the triggers were things associated, to some degree, with Aspergers Syndrome or other ASDs. He was not able to be at all flexible if things did not go his way. He was hypersensitive to slights (real and perceived) from those around him. Environments with lots of stimulation raised his level of anxiety to extreme levels. However, unlike when he was younger, it was not obvious from his behavior or mannerisms that he was experiencing anxiety. The end result was a frequent loss of self control that led to self harm, harm to others, or some type physical damage.

The outbursts became more frequent and restraint was sometimes necessary to secure MJ’s safety and that of those around him. We decided late last winter that dramatic steps were required and we hospitalized MJ. He had been hospitalized before and the stays were helpful in implementing medication changes. This time, however, we ended up back at the ER within two weeks of his discharge with the same problems. At the ER, staff told us that there were no child or adolescent psych beds available in the entire state. There were a few out of state facilities that would have been a great fit but there were no openings there either. I stayed up that night in the ER, and methodically drafted a list of options. After lengthy discussion with my wife and several doctors, we implemented a medication change and brought MJ home. We also admitted to ourselves that our family was in crisis and began pursuing help from avenues that we had previously avoided.

MJ stabilized for a while and then regressed. We began to consider whether or not we could keep MJ safe living with us. Just considering alternatives was heartbreaking for me. We looked at residential schools and found several that would probably be wonderful places if MJ’s behavior was not a problem. However the safety issues resulting from MJ’s problems with emotional regulation ruled out all the “positive” places and left us with a very short list of options, none of which looked healthy. I became driven to make less dramatic options work.

Things remained rocky and in the summer we decided to hospitalize MJ again. We chose to go to a different hospital this time, making our choice based on recommendations from doctors we trusted. It was the shortest of MJ’s hospitalizations, yet the one with the most significant changes in medication. I don’t like to pursue hospitalization but the one very positive aspect is that the medications can be changed more rapidly than at home because of the level of oversight.

We continued some slight medications changes after MJ returned home and reduced the amount activities in which MJ participated. It became clear that the extra activities were causing anxiety for MJ. We decided that safety was the number one priority for MJ and the other activities, while they had their benefits, put safety at risk.

During this period, I became so focused on MJ that the rest of my life was left out of balance. The stress and worry had a lasting impact although I would take on just as much responsibility, stress, and anxiety tomorrow if MJ needed it.

The Recovery

Since beginning the school year several days after leaving the hospital, MJ has had his best year ever. He’s had no safety issues and has been able to keep his emotions from escalating. He’s been happy, participating, and even building some new friendships. The few rough spots he’s had have been very minor and he easily worked through them with some very helpful and accommodating staff.

At home, things have been better as well. Our token economy focused exclusively on safety for several months. MJ has done so well that we’ve been able to start working other things in again. Most importantly, MJ’s been happier. There’s been more TV and video games, but we’ve set limits and within those limits, MJ is able to have enough control to keep the anxiety level low. A friend of the family that sees MJ weekly recently said that this is the happiest she’s seen him in three years she’s known him. So with all of the challenges he faces, MJ has made remarkable changes. Meds and the environment helped, but he’s put an enormous amount of work into growing and developing self control.

The only aspect of this recovery that surprises me is the feeling I get when MJ experiences some difficulty. The months of emotional struggles and unsafe situations affected me as well as MJ. When he begins to exhibit some emotional struggle, I find myself bracing for a full blown escalation even though it hasn’t happened in 7-8 months. It’s been difficult to relax and let my guard down.

In the end, the responsibility for recovery is mine. The expectation of “recovery” is often place on the autistic person. As a parent, I often overlook the responsibility that I have to recover from my own issues. It’s working through the recovery that gives me back my abilities to be the parents that I aspire to be.

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.

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.

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. 

I’m not suggesting that we give up hope, but I propose that parents of autistic children should not feel burdened to always feel hopeful.  No parent should feel such a burden.  Parenting, like all aspects of life, has it’s ups and down, it’s emotional highs and lows.  The emotions that I feel as a parent include joy, hope, anger (usually followed by guilt!), love, disappointment, happiness, and frustration.  If we characterize one of the emotions we experience as hope, we must recognize that we sometimes experience a lack of hope, which some may call despair.

None of these emotions are, by themselves, good or bad, and I propose that it is healthy to allow ourselves to experience all of them when they occur.  Trying to fight them or push the negative emotions under the surface usually results in more serious problems. 

Of course, acting on the full strength of these emotions can also lead to problems.  Making decision in the throws of joy may result in setting completely unreasonable expectations and set us up for a significant let down.  Decisions made during times of frustration or despair could cause harm to ourselves, our loved ones, or our relationships.

When it comes to emotions, both the positive and the negative, I’ve found it best to "ride them out".  Riding out the negative ones is harder and tolerating the pain associated with them can be very challenging. 

While I consider experiencing all these emotions to be normal, we must also be continually watchful that the emotions do not consume us.  Experiencing depression or despair that does not pass is a sign to look for professional help.  Continually shifting between extreme emotional highs and lows is a similar indication.  Some studies have shown that parents of autistic children may be more likely to experience depression or other mental health issues than other parents.  We should all be alert and get help quickly when we need it.  We owe it to ourselves and our children.

As you can tell from the tone of this post, it’s been a tough week. I am experiencing some despair that the current educational placement for one of the boys may not work out.  I know that the remaining options are inappropriate and fighting to build a new placement from scratch would require an intense amount emotional stamina, perhaps more than I have.  It’s a tough situation, but my wife and are devising multiple strategies to help and enlisting the advice and assistance of others we trust.  The hardest thing for me to do is avoid dwelling on the pain that would be caused to MJ should another change of school be needed.   The easiest thing to do is simply to be there for MJ when he needs me, today, tomorrow, and everyday. 

Yet, in the midst of all the worries, today I was also able to experience the joy of watching 9 year old SJ ride a bike, without help, for the first time in his life.  I’m hopeful, that by spring time, bike riding will provide another opportunity for physical development, and shared family time.

The cover headline asks “Is There Hope for Autism?”

Sorry for the language but, it pisses me off that, by even asking the question, the cover implies that the answer might be “No”.

File this under Angry Rant.

The moderator occasionally tosses some of the questions to one of the parents of the younger panelists. I happened to be sitting next to the couple and could hardly contain myself from jumping up and answering. Instead, I waited patiently (ok, not very) while the moderator passed the question to other parent to answer. The mother talked about getting to know the child better and being supportive, gently working her way up to the real answer:

“You need to change your view of communication. It’s not just speaking. There are many ways to communicate and while you are waiting for nephew to speak, you’re missing the ways that he is communicating with you. Find out the ways that he communicates and learn to understand what he is saying, even if he doesn’t speak.”

I could tell the couple was disappointed in the answer. I leaned over and spoke a few words of encouragement. They obviously cared about their nephew and wanted to learn (or they wouldn’t have even been there), but their expectations were off. Hopefully they will continue to learn and grow and adapt to their nephew rather than expecting him to change for them.