Overheard at the PPT

School’s out and the rush of annual PPT meetings that many schools cram into May and June is over. As always, there were a few outlandish things said by school district personnel both during the meetings and in other discussions. I’m repeating some of these below. I’ve heard most of these second or third hand, so consider this my disclosure regarding the accuracy of the quotes. Nonetheless, I’m confident that the general messages below are very similar to what administrators delivered.

  • A principal to a parent requesting transportation for an autistic student to the school district’s summer enrichment program which offers a variety of social and academic development opportunities:

    “Your child is not eligible for transportation because she is not behind grade level in academics.”

    This principal may want to read the IDEA requirements for determining the applicability of summer programming.

  • A parent of a child moving to a new and larger school asked a principal how they would handle a child that got distracted and didn’t come out of a locker room in time for either gym class or their next class. The principal answered:

    “Oh, don’t worry! We’ve had lots of children like that!”

    Nice job blowing off the question.

  • An administrator to a parent evaluating a placement in a private school for children with special needs:

    “We’ll approve any of the three schools you mention, but we won’t provide transportation to the third one.”

    Perhaps they should have said “We’ll make sure that we can provide an appropriate program at one of the two schools that are closer to your home.”

  • An administrator during a PPT meeting when the topic of summer programming came up:

    “Let’s have the staff finish their reports and they can go back to their classes and we can talk about it when the staff has gone.”

    After a pushback from a parent who knows that the discussion is always different when only the administrator is present:

    “OK, if you want to talk about it now, we will.”

    Nice recovery and guess what? The staff that was going to be excused, agreed with he parents!

  • I saved the most bizarre for last. The parent of a child with a degenerative muscle condition that impacted her speaking requested speech services for the upcoming year. The speech and language specialist said to the parent:

    “She’ll grow out of it.”

    The speech and language specialist should probably look up the definition of degenerative.

Posted in Education | 3 Comments

Recovery

This is not a post about recovery from autism. If that’s what you’re looking for, move along; there’s nothing to see here.

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.

Posted in Parenting, Personal | 3 Comments

Same as It Ever Was

Back when MJ was a toddler, he showed an intense interest in lights and switches particularly those on cars. Lights on cars were great, and switches to turn them on and off were even better. The pervasive interest was an early sign of Asperger’s that we didn’t fully recognize at the time. We just accepted it as part of his personality.

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.

Broken ArmWe 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 . . .”

Posted in Parenting, Personal | 9 Comments

Mob Advocacy

I paid more attention to the story about Alex Barton than I have to any news story related to autism in a long time.  I even blogged about it myself three times.  Oops, this makes four.  Even my quiet little blog received links and visitors from all over the internet as a large number of people propagated this story and an even larger group followed it. 

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.

Posted in Blogging, Education, General, Personal | 3 Comments

District Sends Teacher to the Office

The Palm Beach Post is reporting that kindergarten teacher Wendy Portillo has been reassigned to the school district offices while the district investigates a complaint against her. Ms. Portillo recently led her kindergarten class in a vote to remove one of her students, who is likely on the autism spectrum, from the classroom.

It’s a start . . .

Posted in Advocacy, Education | 1 Comment

And a New Goat

As I posted yesterday, I think we have two new heroes in the kindergarten class at Morningside Elementary School in Port St. Lucie Florida. We probably, to some degree, also have a (scape)goat.

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.

Posted in Advocacy, Education | 9 Comments

My Two New Heroes

I don’t typically blog about the latest news stories as I’m always a few steps behind other bloggers in keeping up with the news. Today is different. Today I found two new heroes in this news story. It’s not a pleasant story. It describes how an irresponsible teacher chose to lead her kindergarten class in bullying a student with a disability. According to the story, Wendy Portillo had her students each say what they didn’t like about their classmate, Alex Barton, and then had them vote on whether to remove him from the classroom. The students voted 14-2 to kick Alex out of class.

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.

Posted in Advocacy, Education, Personal | 11 Comments

blink

While I’m currently burnt out reading books on autism, I enjoy finding something insightful about autism in a mainstream book.  I just finished reading blink by Malcolm Gladwell and found some unexpected references to autism.

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.

Posted in Advocacy, General | 2 Comments

Feeling Normal

MJ made an amazing comment this past week, but I need to explain the events of the past few months to put it in perspective.

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.

Posted in Uncategorized | 3 Comments

Things I Learned at Disney World

We finally made the trip to Disney World that we’d been planning for about a year.  Things have been rather challenging the past few months and we considered canceling up to a week before we left, but we decided to go ahead.  It was a good call. 

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.

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