• 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.

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.

Their efforts can be seen in the pictures below. They have spent both the time and money to erect two little red schoolhouses at the four entrances to the DOE building. They even had the inspired vision to write No Child Left Behind on a fake blackboard over each entrance. Yes, that’s eight little red school houses, all helping to improve education for our children.

I feel so much better now.

What is Bullying?

Bullying is not about fighting, it’s about power. For this discussion, I’m defining bullying as using power to intimidate and dominate someone with less power. Special education administrators regularly use their power to get their way, at the expense of the children that they should be serving. I’ve heard enough stories over the past few weeks from my fellow parents to confirm that this bullying goes far beyond a few isolated incidents.

Springtime in Connecticut is PPT time. The season when all special education programs are reviewed. The school year, excluding summer, is 180 days with 6 hours of school a day. A child will spend over 1,000 hours in the educational program. Each spring, the school district will schedule a meeting with parents, devoting an entire 60 minutes to the development and planning of the program for the student for the upcoming year. Yes, a whole hour! Meetings are scheduled back to back to back, and there is little time for discussion and collaboration. If everyone is on same page ahead of time, it works out fine. However if there is any disagreement or complications, there is often a push from the administrator to just ‘get it done’. Get an IEP on paper and move on to the next kid.

My description of the administrators’ behavior as bullying is based on recent stories from parents relating their experiences in this process. The stories come from many school districts and involve many administrators. They come from wealthy districts as wells as those that are not as well off. The stories are told by parents with children just entering the school programs and they are told by parents who have been in the special education system for many years.

How They Bully

The administrators that engage in bullying are never mean, and are rarely loud or unprofessional. The exert their power in more subtle ways.

The most common method of bullying is to not tell parents about services that are readily available in the district. The administrator will tell the parents about the services they want to provide and nothing more, withholding any information that could cause the administrator to lose power. When asked direct questions such as “Can you tell me what services you are currently providing to elementary school age students with autism”, they’ll hide behind “Let’s focus on what’s appropriate for your child and not programs that are designed for students with different needs”. Parents have told me that school districts have never mentioned summer services in the PPT meeting even when children with similar needs are attending summer programs. One parent said they were happy the district was providing a half day summer program for their child, until they found out that other children with similar needs were receiving all day programs.

Another common bullying tactic some administrators use is lying. I’ve heard several stories over the past few weeks of administrators telling outright lies to parents. In one situation, a parent asked a district administrator if their child could receive services over the summer. The administrator told the parent that the child was not eligible because the child is verbal and the summer programs are only for non-verbal students. This district is, in fact, providing services to verbal children over the summer. In another situation, a parent asked if a provider from outside the district could be brought in to provide a specific service. The district administrator told the parent that they don’t ever do that. The parent knew the administrator was lying, as they were networked with other parents and knew of a situation in which the district brought in someone for the exact service they were requesting. An administrator in yet another district told a parent that a child was not eligible for special education because their academic level was adequate (in kindergarten). They ignored the significant emotional and behavioral difficulties the child was having.

School districts also bully parents when they insist on identifying a child’s disability as something narrow such as Speech and Language Delay rather than something broader such as Autism. I know parents in several districts that encountered this problem. It’s a tactic used to control services. A child with a Speech and Language disability would be unlikely receive services from the school psychologist or occupational therapists. However, label a child as autistic, and most educational experts would agree that these services should be part of the child’s program. Some administrators have told parents “the label doesn’t matter” but insist on using the one that is consistent with less services. Others have said “You don’t want your child to go through life with a label of Autism do you?”

There are plenty of other less subtle ways that administrators try to exert power over parents. I know of one administrator who always sits at the head of the table, firmly establishing a position of power. This administrator has made other PPT team members move in order to have the ‘power chair’. I know of an administrator that dominates meetings so completely that they have refused to allow discussion on specific topics. Such discussion could result in consensus around an idea the administrator does not support, resulting a loss of power. The administrator controls the meeting in a way as to not lose power.

I suspect that much of the bullying by the district administrators is targeted at specific groups of parents. You are more likely to bullied the first year your child qualifies for special education, primarily because you are probably not experienced enough to advocate effectively. I believe districts are also more likely to bully lower income parents because they are likely to be less educated about their child’s disability and appropriate programming. Lastly, districts target parents that are not assertive and not strong advocates.

Why Bully?

I don’t believe that most administrators set out to be hostile and mean. The bullying stems, in part, from the expectations placed on them by the districts. They are not rewarded for providing appropriate programs and the progress of children under their supervision. Instead they are rewarded for getting paperwork in on time, coordinating and services without problems, and finding ways to provide services at a low cost. Many are self-motivated to get this done with the least amount of effort, and the least amount of stress (for themselves). For some administrators these motivations are so strong, they don’t mind resorting to a little bullying and lying if it gets the job done.

What to Do About Bullying?

I grew up before the age of political correctness and zero-tolerance for bullying. I personally learned that the best way to handle bullying is to stand up to it. Provided you were strong enough to do it, or had friends that would back you up, this usually ended the bullying, permanently.

We parents need to do the same and stand up to the bullying. We must be strong enough to stand up to it and when needed, connect with other parents to make us stronger. I could write an entire post about the ways we can stand up to it for the benefit of our kids. Instead, I’ll offer a short list of suggestions to consider if you’re being bullied:

• Invite another parent or an advocate to the PPT meeting (it’s within your rights).
• Find out what other services are being offered to other students.
• Research special education complaints and resolutions at the state level (in the US at least).
• Go to an advocacy class,
• Attend a PPT meeting for another child to help another parent and learn something yourself.
• Attend meetings with families outside of your school district.
• Read up on IEP law.
• Learn what the procedures are for filing a complaint.
• Take detailed notes about everything (it helps to catch lying).

I seem to be making a habit of quoting lyrics from songs in my posts. Today, I’ll close with some wise words from the late Bob Marley:

Get up, stand up: stand up for your rights!
Get up, stand up: dont give up the fight!

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

One of our boys has been mainstreamed since kindergarten. He starts third grade next week, which means his fourth teacher in four years. He’s also on his second full time para. Right or wrong, we don’t expect that every mainstream teacher knows as much about autism as we’d like. My son’s teachers receive a lot of support from special educators, school psycologists, etc, but we want them to know the basics of autism on their own.

The same goes for his paraprofessional (or ‘aide’). Paras’ experience vary greatly and, in general, the school district does not do much to prepare them. When my son got a new para a year or so ago, she admittedly knew very little about autism. She had supervision and support, but was certainly willing to learn more on her own.

We gave two different resources to teachers and aides recently. We may ‘lend’ the materials but if the teacher or para wants to keep it, we’ll happily go buy another.

The first is a publication developed jointly by the ASA and the NEA (and other professional organizations) called The Puzzle of Autism. I hate the title but I think it is a wonderful overview of autism for an educator. It’s only 44 pages total and about 25 pages are content on autism. I can’t imagine any teacher not wanting to take the time to read it. Copies of the guide have been made availalbe from the NEA, and while they are currently out of stock, you can download the document and print it.

The second resource is a book titled How To Be A Para Pro : A Comprehensive Training Manual For Paraprofessionals. Although not clear from the title, the book is written for paras and teachers of students with an ASD. The first part of the book presents an overview of ASDs and the second part focuses on how paras can provide appropriate supports. One of the co-writers, Diane Twachtman-Cullen, has authored several books on autism.

Again, it would be great if the school provided these resources, but I don’t mind investing an extra $20 or so each year in the kids education. Providing it ourselves is also a good way to start a dialogue with the teacher.

I chose to ‘go negative’ in a recent interaction with the local school district. Our Director of Special Education is retiring this summer and we expect that the favored candidate is a particular employee already in the school system. My wife and I believe (very strongly) that this individual does not have the skills needed to successfully interact with parents of children in special education. Considering that the Special Education Director is generally the last person able to prevent a disagreement with parents from moving to the legal system, I consider those ‘people skills’ very important.

Unfortunately, it’s very hard to present evidence to the personnel department and the school board to support such a position about ’soft skills’ like getting along with others. There’s no way to get this across to someone without being negative, even if you can back it up with lots of examples.

The retirement of our director caught us somewhat by surprise. We’ve been paying more attention to the kids than we have to finding and reading the minutes from the school board meetings. The hiring process started before we even knew the current director was leaving. There was no time to engage other parents to join together in advocating, although we knew a lot that felt the same way. Instead, we briefly spoke at a school board meeting indicating what type of skills we believed were necessary for the role and fired off a quick, and very negative, letter to the superintendent, personnel director and the school board indicating why we felt this potential candidate would not be good for the district.

With more time, and perhaps more savvy people skills on our part, we could have spoken to each school board member personally. We could have established a polite relationship that would help balance the negative message that we had to deliver. We could have worked behind the scenes and potentially had more of an impact than 3 minutes at a school board meeting allowed. Mabye this could have developed into a little more influence in current and future matters that the school board faces concerning special education. All of these things needed more time.

We made a choice. The dozens of hours required to take a softer approach were better spent on our kids and our jobs. I decided to spend only a single hour writing a letter describing our view of this individual’s past job performance, even if it’s looks like I’m a complainer and a trouble maker.

Ultimately I realized that the ability to ‘go negative’ is just one of many tools that we need to use to advocate for our kids. I prefer to keep this particular tool in the toolbox, and use others to do most of my advocating. But I’m not afraid to take it out and use it.