My husband hates it when new words find their way into the dictionary. Words like ginormous and microgreen. But I like new words. It gives me new ways to think about things.

Take the word 'executive'. It's not a new word and one that currently has some fairly negative connotations (such as in executive golden parachute, and executive jet...) but it is new for many parents, students and educators. It has not been very long that I could use the term "'executive function' and not think that it was what the CEO did.

According to the Encyclopedia of Mental Disorders, the term executive function "describes a set of cognitive abilities that control and regulate other abilities and behaviors. Executive functions are necessary for goal-directed behavior. They include the ability to initiate and stop actions, to monitor and change behavior as needed, and to plan future behavior when faced with novel tasks and situations. Executive functions allow us to anticipate outcomes and adapt to changing situations. The ability to form concepts and think abstractly are often considered components of executive function."

Well now that I look at that, it is what the CEO should be doing. Which makes it the obvious analogy for young people who have a deficit in their executive functioning.  This is the student is teachers love and hate. They can tell the student is bright, intellectually capable, and often verbally engaging but darn it, they just don't get their work done. I still hear teachers say things like, "If you just focused." or "if you just applied yourself" or 'if you just turned it your homework, you could get an A."

Does it occur to them that if the student could, he or she would?

People, like businesses, affected by executive functioning issues, look disorganized, disinterested, and unfocused. They don't plan well, prioritize well, or anticipate well. They often significantly overestimate or underestimate how long things might take. A mom I know is trying to help her son understand how long he is in the shower- he loses all sense of time and priority once he's in there. This same student, with the help of a skilled teacher, is realizing that when he sits in an class and hears what the assignment is, he thinks, " I can do that." But a day or a week later, he has no idea how to start the work. So he doesn't.

I am trying to find a way that we can have students struggling with executive functions problems, whether it's part of their AD/HD, autism or learning disability,  share what it's like to be in their head with teachers, administrators, parents, and other students. I got a glimpse of this myself.

I was talking to a good friend about my desire to find a way for these students voices to be heard and to develop strong strategies to help support them in the classroom and in life. I could barely explain it. I felt confused and overwhelmed with the ginormous task. I could not figure out how to start. I didn't know if I should go on-line, get a book, go to a doctor or talk to teachers. My friend suggested that I graphically organize my thoughts and ideas. And then I got it; This is what executive functioning problems feel like. I knew I was on to something but I sure couldn't make any sense of it.  Using visual structure to organize is a great strategy to organize projects.

It takes more than strategies to give our students the tools they need to succeed. First, they need to understand how their brain works. Then they need individualized approaches to organizing, planning and prioritize. They need to try things that don't work until they find what does work. They need to be guided to think is creative ways for solutions that are sustainable, meaningful and that work.

I plan to talk more specifically about these areas and include real-life examples. That is once I get myself graphically organized.

A teenage girl was asked why she thought that the pilot program she had just completed was important. The program was through Rachel Kessler's  Passage Works Institute. The goal was to bring the soul back into education. The teen's teacher said, "Help me figure out how to explain the value of this program. It's so complex."

The teen gave him a puzzled look, "It's easy. When you hold my heart, my brain can learn."

Passage Works describes their work as "Dedicated to transforming the culture of classrooms, schools and districts so that the inner life of students and teachers is safe, nurtured and welcomed. By “inner life” we refer to that essential aspect of human nature that yearns for deep connection, grapples with difficult questions about meaning, and seeks a sense of purpose and genuine self-expression."

While I encourage readers to check out their work and read more about the gateways to developing a rich inner life and how the Institute works in public and private schools, I think that there is a fundamental truth that is often overlooked by the special education system. That  truth is that  students need to feel that they they belong at school. They need to feel that it matters to others that they are in the room. They need to feel that they have something valuable to offer. They need to feel a connection to the people -adults and students. They need to feel, as the teenager above said so well, that their hearts are held.

At a recent middle school meeting for a young man with the label of SIED (Significant Identifiable Emotional Disability), his parents shared with the team that he comes home saying he is scared at school. The father had tears in his eyes as he shook his head, "We have to do something. My son does not feel safe at school. If he doesn't feel safe, he can't learn."

The team came up with a variety of strategies and I checked in a couple of weeks later. Things were much better. "What worked?" I asked. The team told me that the principal was going out during passing periods and standing near the boys' locker. He wasn't really doing anything, just standing by. The young man now felt that someone, in fact the head guy, had his back. He started smiling again. He started sharing again. He started learning again.

The team also looked for other ways to engage the student in meaningful ways to the school. He was feeling that no one really cared if he came to school or not. They put him back at the school store- a role he loved but due to schedule conflicts, had been cut. I was glad to see it corrected but I am concerned that this decision did not even acknowledge, much less support, that being part of the school store was the key to this boys connection to school.

Now, the heart is always part of the equation. I use it with my own kids. I ask it at IEP meetings. I talk to parents about it. I ask the question in some form or another, "Is your child's heart held at school?" Without it, their brain's won't work.

The first day of school my 8th grader came home and said," The teachers must have gotten some training, Mom. They are all being nice."

My son has ADHD and struggles at times with staying engaged, controlling his impulses, and connecting to school work. Like many kids with ADHD though, he is very observant and sensitive.

At first I figured it was the honeymoon of the first day- everyone on their best behavior, all hoping for a good year. But then he started telling me more specifics, "Last year, my math teacher would have  'yelled' at me for not finishing my work," he explained. "This year, she told me it was OK because she knew I had done my best."

I knew something he didn't know but he could see. The teachers were receiving new training-the School-Wide Positive Behavior Support Program. The goal, as this site explains, http://www.pbis.org

In the past, school-wide discipline has focused mainly on reacting to specific student misbehavior by implementing punishment-based strategies including reprimands, loss of privileges, office referrals, suspensions, and expulsions. Research has shown that the implementation of punishment, especially when it is used inconsistently and in the absence of other positive strategies, is ineffective. Introducing, modeling, and reinforcing positive social behavior is an important of a student’s educational experience. Teaching behavioral expectations and rewarding students for following them is a much more positive approach than waiting for misbehavior to occur before responding. The purpose of school-wide PBS is to establish a climate in which appropriate behavior is the norm.

As my son sees it, that means the teachers are learning to model better behavior. They are trying to give students more positive comments. They are pausing before letting their own biases come out. They are recognizing that they play a big part in how students behave in their classrooms and in the school buildings.

And the payoff is already apparent. My son has first-hand experience with punishment-based strategies at this same school. He learned to shut-down, not engage, not raise his hand, and not like school. Already he can feel the difference and is completing all his assignments, developing respectful relationships with his teachers, and he has already accumulated over a dozen "getting busted for good behavior" slips. I haven't heard a negative statement yet.

He has changed because the adults have changed. Last year teachers verbally attacked him for not being the kind of student they preferred. They were (rightly) frustrated by his clear intelligence and obvious ability that he did not want to share with them.  He did change some and raised his grades so they got off his back. But he didn't care about them or about school. He was surviving. Now it looks like he just might thrive.

Sometimes it takes a book to explain a person.

Let me explain. My son was trying to figure out his classmates' challenges. He knew his friend struggled with academics but was also a smart kid. I tried to explain that while his friend was bright, he had trouble showing people what he knew through reading or writing. My son could see how hard he worked to write or to read aloud. It still didn't feel like true understanding of what it might be like to be his classmate. "It's kind of like Hank Zipzer," I said, "you know, from the books?"

The light went on. "Like Hank? Oh I get it," he said.

Hank Zipzer: The Mostly True Confessions of the World's Best Underachiever is a series written by Henry Winkler (the Fonz) and Lin Oliver. Hank is a kid who lives with his parents, sister, and his dog Cheerio in New York. Hank is smart and creative. He has two best friends who get him, shares pickles with his grandfather, and has learning challenges. He has difficulty showing what he knows. Like my son's classmate, he doesn't like school because it asks him to act and respond in ways that are not within him. The books are also very funny as Hank tries to fit his round self inside the square holes that school and society expects of him.

I've always believed in the power of books to show us our own humanity. Reading a book about someone not like us, gives us insight into what it's like to live in that person's skin. It allows an intimacy that is hard to get in real life. It's safe. It's accessible. And it can be highly entertaining. The Hank series  work because they ring true- Henry Winkler also has learning challenges so he writes from the inside out.

My son read the Hank books because they are well-written, funny stories.  And because he did, he understands what it's like to be a kid who learns differently. He feels it.

Thanks Henry. Thanks Hank.

One of the ironies of parenting is that just as you think you know who your child is and what they can and can not do, they prove you wrong. I got this lesson yet again when Sabrina, my 9-year-old daughter with developmental delays, graduated from the basic therapeutic horseback riding center and started at a new barn.

The teacher was the same but the horses much younger and faster. Upon our arrival, the teacher L put my daughter and the horse, Shonie, in a pen to get to know each other. Now until this moment, Sabrina had been riding with a  teacher and a side-walker who had the horse on a lead rope. And the horses were very old and very slow. This was new.

Sabrina petted the horse and then L had Sabrina put on the halter and lead her around the pen by herself. Again the contrast of barely being allowed to hold the end of the rope while an adult held the main rope at last week's lesson was amazing.

Together they put on reins and a pad but no saddle or stirrups. Sabrina got on (mostly on her own) and started riding this sweet mare around a small arena. She shifted and slipped and steered. She rode this pony like she had been riding all her life.  No fear, no worries, she just took the reins and rode. She was in heaven. I was a bit in shock.

In that moment, I had to discard my beliefs about her riding a horse. This was the real thing-wild, big and powerful and in that moment I saw it in both Sabrina and her horse. The horse tried to do whatever Sabrina asked.  Sabrina tried to figure out how to ask her to do what she wanted.  

As I witnessed my daughter, I had to form a new picture of who she is and what she can do.  In that moment, I saw a girl who loves horses and is completely capable of riding them.  As she bounced on Shonie's back, she was not her disabilities; she was a girl learning to ride a horse.

The next week, she learned to put on a saddle and started trotting. She told us she wants to learn to jump and canter. And now I know she will. Sabrina is an equestrian.

Now it's my turn to learn how not to cringe when she falls off or put limits on her goals. Sabrina rides bareback, whether I can or not. This belongs to her.

I found Lottery by Patricia Wood sitting on the new fiction shelf at the library. I'm always looking for good novels that feature characters with disabilities- and this is the best one I have read in years.

The hero of this refreshing novel is a man named Perry L Crandall. He tells us the story of his life. He sets a tone from the first page when he tells readers the most important thing, “I am thirty-two years old and I am not retarded.  You have to have an IQ number less than 75 to be retarded. I read that in Reader’s Digest. I am not. Mine is 76.”

The next thing he wants you to know is that he won twelve million dollars in the Washington State Lottery. First-time novelist Wood has crafted a defining story. She has taken a character that at first does not seem to be someone we know. After all, how many of us really know people with cognitive disabilities? But she masterfully finds the commonality in this likable character. Perry loves, longs, and laughs. He does best with routine and predictability but he manages to navigate his way though his unusual life and circumstances by listening to his heart. His Grams, who dies early in the book, taught him many things, including how to save and spend, literally and figuratively. She tells him that’s “it’s very important to think of your future, because at some point it becomes your past.”

Her words of wisdom foreshadow the conflicts that come when she dies and when he wins the lottery. She knows he is suggestible (one of his words of the day) and they make a list of whom he can trust. His family is not on the list. But his friend Keith is and so is Gary, the owner of Holsted’s Marine Supply where Perry has worked since his grandfather taught him about boats. When his beloved Gram dies, his half-brothers sell the house they shared from under him and kick him out with $200. It is hard to read when you start to personalize through Perry what happens to adults with disabilities all over the country. Wood makes us uncomfortable but still wanting to discover what will happen next.

This could have been a bitter book, about how family and friends can be spiteful, prejudiced and horrid. But it’s not. Perry does not become like them. He maintains his wonderful sense of self throughout the book. He doesn’t want revenge or to keep all the money for himself. He wants to be with his friends, he wants to be in love, he wants to be part of the store’s success. He wants a good life and he has one.

It’s rare to see the main character be an adult with disabilities. It’s a fine line between making them someone we pity and someone who inspires us to be ourselves. It might challenge some readers to look at their own negative beliefs, name-calling, and other derogatory remarks towards people who may (or may not) be mentally retarded. Perry shows us that even our assumptions that all people with cognitive challenges are the same needs to be challenged. Perry is clearly a well-defined individual and deserves our full attention. As you can imagine, winning the lottery brings out the hunger in others for his money and he has to learn to manage this new role. His true friends, Keith, Gary and Cherry (the young woman he loves but who loves Keith) help him as they expand their own perspectives about Perry. For instance, without his money, would Gary consider having someone like Perry become an active business partner?

You’ll have to read Lottery to find out what choices Perry makes and just what the L. in his name stands for. It’s worth the time.

This is the question I ask parents and professionals I work with, groups I facilitate, programs I create, and with my own family. Living and working with people of all kinds of ages, abilities, temperaments and roles, requires organization, respect, clear agreements and boundaries, and defined goals. By using these three qualites as the foundation for successful collaboration, we can make desciosn that support the health, growth, and outcome for people and for the systems we work within. Today, I'll talk about the three qualities.  

Is it fun? One thing I’ve learned from living and working with so many people who have ADHD, is that many of them like to keep things lively. It’s what gets my teenaged son into trouble at school and at home. While I am trying to teach him to find acceptable ways to make class time more interesting, he does bring a certain spark to the room.  As an adult, fun means being present in a positive, enthusiastic way. At times, it could mean silly, or goofy, or playful. But it’s much deeper than that. Ask if whatever you are doing is fun by asking;

• Is it engaging?
• Does it make you feel alive?
• Are your senses heightened?
•  Do you lose track of time and worry?

Then it’s fun.

Is it meaningful? This is the heart of what is important.. Everyone, whatever their abilities, has a fundamental need to matter. Until we have a sense of belonging, we have diffulty learning and colloaborating. If we can’t learn or work together, then we feel badly about ourselves. If we feel badly about ourselves, we don’t feel worthy as people and a negative cycle is created. Belonging gives us a place to feel meaningful. When we belong, we are contributing to the group. Our involvement matters. We matter.

Is it sustainable? In order to keep doing the work it takes to be present and have fun, to belong and be meaningful, our efforts have to be sustainable. Great ideas are important but without sustainable implementation, it won’t work. It’s sort of like New Years’ Resolutions, if we try to do too much, such as start a new diet and start exercising, we are usually asking for too much and can’t sustain the effort it takes to change. Start with what is sustainable.

When I was the PTA president at my kids’ school, I used these three themes to direct all my decisions. I wanted our monthly meetings to be worth attending. So I set up a structure to run the meetings in that always included time for every voice to be heard (meaningful), time to pause and be present often in a whimsical way (fun) and each meeting followed the same basic format (sustainable). The school still uses that structure.

I also ask these questions when I talk to parents about their child’s school experience.  I encourage them to reframe their IEP goals and meetings around the question of if what we are doing/offering engagement, connection and continuity?

• Does the student feel they belong?
• Do they engage in meaningful activities throughout their day?
• Is fun defined by being pulled out of class for a special ed field trip or by doing experiments in science lab?
• Can the student sustain the effort to participare and learn?
• Can the adults working with the student sustain the effort to provide meaningful participation and engaging learning?
• Are the goals and objectives consistent with a long-term vision of community involvment?
• Do those involved feel heard, valued, and respected?

How do you ensure your team's efforts are fun, meaningful, and sustainable?