Life on a Raft; isolation in special needs families


“Who is going to take Ava to her soccer games this week?” my husband asked, concerned. 

“I don’t know. I will think of someone to call,” I responded, although I cringed at the thought.

Did I have anyone to call?  When was the last time I had spoken to one of the moms who had kids in Ava’s class?  I wracked my brain and remembered one playdate over the summer she had had.  I called that parent, but she was unable to help.  She was sweet and gave me a list of other moms that were carpooling.  She didn’t understand; carpooling was part of the island life, and we had moved away from the island years ago.

School used to be such a place of isolation for us.  I dreaded going into the public school more than anything, and yet I will bet that I was called in more than any other parent there.  I can remember one time being called into a meeting with Jony’s second grade teacher.  She was a safe place for me and for him.  She had kind, warm eyes and a generous smile, and although she couldn’t reign in my son’s behaviors, she always landed in a place of compassion for him.

 I put on my cloak of defense that morning – the cloak that demanded the IEP be followed and his needs be considered, the cloak that protected me from my own tears and vulnerability.  She greeted me with a warm hug, and I felt the cloak slipping off my shoulders.  I don’t remember what the meeting was about – there were so many meetings!  About 10 minutes into the meeting, the P.E. teacher barged into the room.  He said, “I am sorry to interrupt your meeting, but I heard you were here, and I need to talk to you about Jony.”  He didn’t look sorry; he looked angry.  His speech was pressured and irritated.  I don’t remember what he said, but I remember how I felt….smaller and smaller, wishing the ground could swallow me up.  Before he was done, the school counselor came in to pile on the complaints, full of criticism, judgment, and annoyance.  I remember standing up, willing myself to advocate, but I couldn’t find any words, so instead I babbled, “I need to go – maybe you can just email me.”  I rushed out the door, hoping I could get to my car before bursting into tears, and the music teacher rushed out of her room as I hurried by.  “Do you have a minute?  I really need to talk to you about Jony,” she said.  “No, I don’t,” I replied as I hurried past her surprised gasp.  I made it to the car before bursting into tears. 

Experiences like this pushed us into isolation.  We only participated in the mandatory holiday parties.  I became an expert in avoiding eye contact and conversation at school activities.  Too much friendliness always seemed to lead to a conversation, and that always led to complaints about Jony.  I used to pursue social contact, but as the years got more difficult, I began to avoid it.  It was just so much simpler not to interact too much with people. 

We started out on an island with everyone else, but we were sometimes pushed, sometimes moved away willingly, until the only place to go was out to sea.  We built a raft; at first it was rickety, and the water threatened to overwhelm us, but eventually we added to it, making it sturdy and safe.  We created our own world away from the island where we created our own entertainment, safety, peace, and sometimes rest.  There are other families on rafts.  We see them and bump into each other once in a while.  Sometimes our rafts are tied together for a bit and we visit, but each raft is built for the specific needs of the family, and often these needs conflict.  On one raft a child can only calm down by using his iPad, but on our raft, iPads are prohibited.  Mostly we relate from a distance: phone calls, emails, texts, and thoughtful gifts.  

Then there are the island people.  We still have island friends.  They are kind, warm, and flexible, and they work at staying connected.  It is hard to stay connected to a raft family.  When we finally get to the island activity, we spend the majority of our time meeting needs and little time engaging in the social activity. 

Then there are the children on the raft who are only there because of the needs of other children in the family.  These children long to be part of the island life.  They live in constant dissonance, wanting both to be on the raft and to be on the island.  They go to all the island  get-togethers, but they usually can’t host any.  There just isn’t any room on the raft for extra people.  Even if there is room on the raft, they understand that islander children don’t understand raft life.  Islander children wonder at the high structure of the raft, paired with what seem to be low expectations.  There is great sadness for these children.  They understand all they miss, and as a result develop a greater sense of maturity. The parents on the raft understand that island children can survive on a raft, but raft children cannot survive on the island.  It is a price they know is unfairly paid by the child who would thrive on the island.

We still live on the raft, but we visit the island frequently now.  At some point along the way, we got used to the sweetness of the raft – the way it doesn’t matter what you have there or who you are – the way you focus on all the treasures you have, and they seem so many while you are on the raft – the closeness of the people on the raft and those sweet friends that join us here on occasion.  In changing schools, we have met a community of raft families, families that do all the things island families do but with different expectations and much different conversations.  All of us, regardless of jobs, social standing, or finances, have chosen to leave the island because the water is kinder to our children.   We started to feel less isolated and more connected.

There are some families that are able to move onto the raft for a season, coming back to the island restored. Other families stay on the raft forever. Every family’s goal is not to move back to the island, because some children will never thrive there.  For these families, the goal is to find the sweetness of the raft. The goal is to connect with the people on the raft, and to stay connected with people who matter to you.



Window of Tolerance


We all have a window of tolerance.   When we are operating outside of that window, we behave badly.  This window is widening or shrinking, depending on what happens during the day.  When we sleep well, eat well, and get the physical movement that we need, our window is larger.  Every choice we make during the day either enlarges the window or shrinks it.  Every trauma that a person endures shrinks that window of tolerance. Trauma can be a change in caretakers, moving, a hospitalization, persistent bullying and many other things that make a person feel powerless. The children I work with typically have multiple traumas, and therefore they develop very small windows.  Requests that seem quite reasonable can fall outside of that window of tolerance and lead to a child feeling overwhelmed, which looks like defiance.  It doesn’t matter how smart or capable the child is, when his little window is full, any request can be too much.

Understanding what fits inside of our child’s window is key to success.  Your child may be super athletic, but school is the only thing that fits into his little window.  Soccer practice at the end of the day may fall outside of this window, no matter how much the child or you love soccer.  Often parents don’t see discouragement; they just see defiance. “Buddy, put on your soccer things. We need to go,” can lead to a meltdown.

For children with a small window of tolerance, homework is almost always outside of that window.  Research has shown that homework has no benefit in elementary school and very little benefit in middle school.  There is no reason for a child with a small window of tolerance to be doing homework.


Things That Happen When a Child Operates Outside His Window of Tolerance

Children Shut down or Come Out Swinging

This is the child trying to keep himself safe.  Everything done outside of his window is designed to keep himself safe.  It is self-preservation at its finest.  The child knows that he just can’t do something in that moment, so he refuses to do it. He may shut down and start moving in slow motion.  It is as if his feet are in concrete, and even his words slow down and become less clear.  He may start to cry and whine.  Some children move immediately into a fighting stance.  They begin to argue and become aggressive with their words and sometimes their actions.  Children react when something is outside of their window of tolerance, and their discouragement takes root quickly.

Children Don’t Learn

Nothing done outside a child’s window of tolerance will take root.  The lesson you are determined to teach about responsibility, not quitting, determination, etc., will not be effective.  It is often when our children are outside of their window of tolerance that we become determined that they will do whatever it is that we have in mind for them to do.  You may get compliance, but you won’t get learning.  You will encounter the same issue day after day.

Children Lie

In an attempt to keep things within their window of tolerance, children lie to keep themselves from operating outside of that window.  If homework is outside of their window, then they say they don’t have any.  As they get older, they get more creative. They may plagiarize notes, stuff homework down vents, copy friend’s assignments, etc.   This is very confusing, especially for a parent that knows his/her child is capable of doing the assignment.  They are capable, but only if they still have some room in their window.  Maybe that means they are only capable before 10:00 am.  Maybe that means they are only capable after an hour of play outside.  There is a big difference between a child who lies maliciously to get someone in trouble and a child who lies to avoid being in trouble.  Most of the time when children lie, it is to keep themselves operating within that window of tolerance.

Children Feel Emotionally Disconnected

A child who is operating outside of his window of tolerance usually can’t get back inside of that window without an adult understanding that the child needs help getting back inside of that window.  When an adult caretaker fails to “see”, really “see” his/her child, the child develops a sense of loneliness and despair.  The child understands that he is often out of control, but there isn’t anyone who makes sense of that for him.  There isn’t anyone that “sees” that he is really just trying to keep himself safe.  This emotional disconnect often creeps into every relationship, and the child just doesn’t feel like he “fits” or “belongs” anywhere.  I often hear things like – “I am not like anyone else. I don’t feel like I belong in this family. I have no friends. No one likes me. I am just different.”

Children Develop Unhealthy Coping Strategies

Instead of learning to engage in authentic communication with their caretakers, children’s only goal of communication is to avoid having to do something outside of their window of tolerance.  Instead of parents and children having conversations about authentic fears, interests, and hobbies, their conversations start consisting mostly of confrontation and avoidance.  The child becomes an expert at avoiding anything outside of his window of tolerance, no matter how unhealthy his coping might be.  I can’t stress the importance of authentic communication enough.  I believe that a family can get through anything if it is having authentic conversations.  My child coming to me and saying, “I am so discouraged because I can’t do what other kids can do.  It makes me want to lie to you about homework because I know I can’t do it,” feels very different than a child stuffing his homework down the vent and insisting, despite the teacher’s e-mail, that he has no homework.  This inauthenticity creates rifts that become harder and harder to build bridges across.

Children Despair

This one grieves my heart the most.  One’s experience in childhood determines what one believes is possible for his life.  Children are so very vulnerable.  Everything that happens to children is determined by adults charged with their care.  Every adult can shrink or expand that window based on his/her treatment of that child.  There is a difference between surviving and resilience.  Children are survivors, but they are not as resilient as most people think.  They are little people with every emotion intact, but without the power to change their lives in any way.


How Do You Expand the Window of Tolerance?

Show the Child Every Edge and Corner of the Window

Children need to be involved in problem solving for this.  Without judgment, notice with the child what activities seem to be outside of that window of tolerance.  If at all possible, try to remove those activities.  This is hard for parents because these activities are often an important part of the parents’ or family’s identity.  Maybe you always thought you would expose your child to music at an early age, or you were a basketball star in college, and your son clearly takes after you in athleticism.  These are not easy things to give up, ever.  If they were easy to give up, you already would have done it.  Show your child the edges of the window when you notice he is pushed over the edge.  You might determine with your child that basketball fits into the window on Saturday and Sunday, but not during the week because school takes up all the window space.  In doing this, you are empowering your child and expanding the window.  Children who feel empowered and understand the edges of their windows feel less stress. Reducing stress increases the size of the window.


Know When to Raise or Lower the Bar

As you practice noticing when your child is operating outside of his window of tolerance, you will start understanding when to raise or lower the bar of expectations.  If a child is operating inside of his window of tolerance, he may be easily able to complete a book report from start to finish.  If a child is outside of his window of tolerance, he may not even be able to handle hearing about the book report.  You need to be able to set the bar for your child and insist on setting it for other adults that are in charge of your child as well.  Again, this is not easy.  People expect us to make our children behave, not for us to request that adults adjust their demands on our child.  It is not the way things are done.  It is advocacy.  It is what your child needs from you.  You may write the teacher an e-mail and say, “I know the book report is due tomorrow, but my child just cannot do a project like this during the week.  We will do this on Saturday.”  Here is the kicker.  It may mean that you write the teacher and say, “My child can’t do any homework.  He has nothing left to give at the end of the day and needs his weekends to recover.”  You may need a pediatrician’s note for this one.

Remember, the bar is constantly moving.  If you fix the bar too low, your child won’t learn.  If you fix the bar too high, your child will despair.*  You have to move it up or down depending on your child’s needs in the moment. When the stress in the environment is reduced, the window gets larger.

Alternative Interventions

I will just barely touch on this topic, but it is something that needs to be considered for every highly sensitive child.  A good Functional MD can determine if your child has food sensitivities, parasites, or vitamin deficiencies.  An OT or Developmental Movement Specialist can determine what types of movements may be necessary.  Some children require multiple interventions in order to enlarge their windows.

I am not the parent I used to be.  I am so thankful for people who showed me where and how to set the bar appropriately for my child.  It has not been an easy journey, and I moved down this road kicking and screaming at times.  Often every family member sacrifices something in order for that child to stay within his window of tolerance.  This journey is hard, but it is worth it.  Your child is worth it.


*Karyn Purvis spoke often about knowing where to set the bar for the child.  This concept came from her teaching and TBRI principles. 

Parenting with Process in Mind


“Sometimes I think about writing a book about our own healing journey,” I told a friend of mine.   She responded, “I think you should wait a while, and then you can write about how your kids turn out.”   I didn’t have to think long before responding because it is something I had already considered.  I said, “That sort of thinking implies that the process was worthless if the outcome isn’t perfect.”  The process is what matters.  Did you love your child well today?  Did you encourage and connect with your child?

Outcome parenting is parenting with certain goals in mind.  Outcome parenting creates an environment where children feel as though they have to earn their worth, an environment where opportunities for joy are missed because the outcome the parent has in mind remains unachieved.  Outcome parenting has few pivotal moments that determine whether or not the child/ parent has been successful.  Examples of these pivotal moments would be making the travel soccer team, graduating from college, making the varsity cheerleader squad, staying in honors classes, marrying well, looking a certain way, having the right friends, etc.

Imagine a child who is very musically interested and starts taking piano lessons.  He starts out self-motivated and loving the process, but soon Mom develops some goals for his new hobby. There is a scholarship available to a limited number of students that do well at a school competition.  She starts paying attention when he practices and harping on him when he doesn’t.  She complains about all the money she is spending and how little progress he is making.  Practicing that was once looked forward to is now the dreaded time of the day.  The school competition comes up, the child’s nerves get the best of him, and he misses several notes.  Because the focus of this was the outcome, the child has failed.  The mother feels like a failure too.  All that work, fighting, and suffering was for nothing. 

Imagine instead a parent that focuses on the process.  Her child wants to learn how to play the piano.  She encourages him to do that and pays for him to have piano lessons.  He hates the music that the piano teacher has given him to practice, so his mom goes to the music store with him to find music books on his level with songs he wants to play.  She enjoys listening to his progress and comments frequently on his hard work.  She says that as long as he invests his time in music, she will support him by paying for his lessons.  The same school competition is coming up.  The child decides to participate.  He also misses several notes and does not qualify for the scholarship.  He feels embarrassed that he messed up in front of everyone, but he does not feel like a failure.  The joy for him was in the process.

Parenting that focuses on process is much more joyful and connected.  It is not what the child achieves, but how happy and connected the child is during the process. It is being able to forget about everything the child needs to know by Friday for his test and just focusing on supporting him exactly where he is in his learning.  It is about staying more connected and invested in the day to day interactions with your child than in the outcome. 

 I fell into the trap of outcome parenting for years.  I decided it was my job to get my child to learn everything he needed to learn in order to make sure he could be successful, get into college, and provide for himself.  Instead what I did was create so much stress in our home that he could NOT learn.  I spent hours working on colors, numbers, and letters to no avail. On bad days, I measured my own success as a parent and his success as a person by the dismal outcome of our efforts.  When I gave this all up and started focusing on the process, he started to learn by leaps and bounds.  He went from resisting all types of school work to loving certain subjects, being a voracious reader, and being on grade level in every subject.  There are still subjects that he struggles with, but he loves to learn again.  He feels good about his efforts and knows that if he wants to achieve something, he can.  He just has a different idea of what he wants to achieve than most do.

The other day, my son came in from school with a math test that had every single problem marked with a big red X and stamped with a big red 0.  Because we have learned not to focus on this type of thing, he was only a little discouraged about it.  I noticed a small red note in the bottom right of the corner that said, “You actually got every problem correct on your scrap sheet of paper.  You just transferred them into the wrong blank spot.”  I said, “Oh my goodness, you worked so hard and got every single one right.  I know that took a lot of effort, and you did practice problems all week.  Your work paid off!  You know exactly how to do these.”  He beamed.  I still have a rare day here and there when I catch myself parenting as though the outcome is the only thing that matters.  These are not good parenting days.  They are filled with fear and urgency, both of which make very bad parenting buddies. 

Since Mother’s Day is around the corner, here is a thought.  You are not a failure because your child isn’t hitting society’s goals for him.  Instead, you are a champion because it takes a lot more courage to focus on everything your child is learning and how far your child has come.  It takes super-hero strength some days to stay focused on the small victories your child has had.  There is absolutely no more value in a child that achieves every wanted outcome than one who does not achieve any.  When we focus on outcome, we make children feel like their value is contingent on their achievements.  I don’t believe any parent wants to communicate this to his/her child.  Any child can be a success if we focus on the process.

Choosing to Pay Attention


“You know, Mommy,” my son said to me, “Abuelita* and I have so much in common. I think that is why I love to spend time with her so much.” He said this with so much sincerity that I found myself puckering my lips to avoid smiling at his statement. I was trying to think what on earth he was referring to. My son is a tall eleven-year old, active, extroverted child who gives a verbal, running commentary about everything going on in his mind and around him. He talks constantly. He towers over his abuelita in size. Abuelita is tiny, walks with a cane, is very introverted, and only talks when she has something important to say.

Over the holidays we visited Abuelita, and it was not uncommon to find Jony with his abuelita. We planned all sorts of entertaining outings, and even during those, we would find him sitting in the shade with her. One day we went to an archeological site. As we were driving in, we had already picked out the shady spot where Abuelita would sit while the kids explored. Abuelita avoids the sun like the plague. She brought a very large sunhat and an umbrella to shield herself from the sun, both of which she used even though she was sitting in the shade. If she is walking to the market and sees an awning across a busy street that will provide her six feet of covering from the sun, she will risk her life to cross that street with her cane for ten seconds of shade.

I had all these ideas about what this trip would look like. I traveled all over the world with my family growing up. We didn’t have much money, and though these trips always had a work-oriented destination, my parents took advantage of each one. My dad was quite the adventurer, and if we were at all close to some significant landmark, he would figure out a way for us to see it. “Close” is such a relative term for very significant landmarks like Paris, France, which could be ten hours away, and for other less significant landmarks like Mount Rushmore, which could be just a few hours away. My mom would read aloud to us about the history and landmarks of our destination. This all took effort, as it was before the time that the internet was at our finger tips. It was important to them – learning about the history, appreciating the culture, and taking advantage of every opportunity we had. This is the framework I developed for travel.

Fast forward through the years, and travel looks very different for me now as an adult with children of my own. My husband and I had hopes of traveling with our children. For years, travel was so difficult that unless we were going to a family wedding or funeral, we avoided it all together. We said “no” so often, refusing invitations, that it is amazing we had any friends left. We learned that routine was our best friend, and there is never enough routine in travel. Every day brings something new and exciting; for easily overwhelmed children, this means every day feels riddled with anxiety and is unsafe. Meltdowns were epic when we traveled.

We have come such a long way. Trips are no longer dreaded in our home. This doesn’t mean they are easy and stress-free, but the good parts outweigh the hard parts. We come home tired, but happy that we went. Before, I can remember saying to my husband, “Remind me that this was not worth it whenever I get another travel idea in my head.”

Over the holidays we went to see my husband’s family in Mexico. His childhood home is very close to several archeological sites, as well as other historical sites. I had this idea – I blame my Dad for this one – about all the opportunities the kids would miss if we didn’t make it to everything that was “close” to Abuelita’s house. I had one child who relished each location, asked lots of questions, and begged to stay longer. Jony was not that child. He complained about the sun while we stood at the base of one of the largest pyramids in the world. He complained each time we got in a car to go anywhere. The car always felt too crowded and too hot, and the speed bumps agitated him. He just wanted to stay at the house with Abuelita . He really didn’t care about the pyramids, natural hot springs, or the history of the city. He gagged impolitely every time someone added spicy grasshoppers to his/her food, no matter how many times I gently reminded him that was impolite. Every time he gagged, I served myself more grasshoppers, hoping to ease my own discomfort.

So much of what I wanted him to care about, he just didn’t. However, the things I value most in life he cares about deeply, and those are relationships. I had to choose to pay attention to all the ways he showed “care”, and there is not a single person in the family that does that better than he does. Every time I went looking for Jony, I found him with his abuelita. He was the first to help her in and out of the car. He worried if she hadn’t gotten out of bed and would climb onto the bed next to her asking, “Te sientes bien, Abuelita?*” When he found her flipping through a math workbook one morning, he rushed to bring her a stack of more interesting books. He was sure that she wasn’t actually interested in the math workbook. Jony went to the market with her in the mornings. He cheerfully carried her purse as she held onto his arm on the uneven sidewalk. The only moments of tension between the two of them happened at 4:00 p.m. every day when her favorite soap opera started at the same time as his favorite cartoon started. Even then, after a little pouting and complaining, he would settle in beside her comfortably, sitting as close as you can to someone without ending up in his/her lap. What struck me is how present he was with her. I cannot imagine any other boy his age being that comfortable in the same situation. Most children become very somber when they are taken to visit a sick family member at the hospital or their grandparent in an assisted living center. Grandma asks for a hug, and children hunker down next to their moms, feeling the weight of the sorrow that fills the air in those places.

The simple, sweet way that Jony loves is his gift. He might not care about seeing an ancient city, but he is the first to comfort or offer companionship to someone who is lonely. That is the stuff of life. A person can be successful if he can have successful relationships. This is a child who will succeed. His ability to just “be with” exceeds my expectations of a child his age. It is a gift. My choice is this – what do I pay attention to? I can choose to pay attention to the fact that other kids his age would appreciate the experiences he didn’t. Or I can choose to pay attention to the fact that my son cares about his family so much that being with his family exceeds any experience that I could provide for him. I can choose to pay attention to the fact that my son is a nurturing caretaker, and one day I know he will show his dad and I the same care as we age. I can’t explain to you why Jony thinks he has so much in common with his abuelita because he couldn’t find the words to express that to me. I suspect it has to do with him feeling connected, needed, and a sense of belonging.

*Abuelita literally means “little grandma”. It is a term of endearment for a grandparent in Spanish.

*Te sientes bien ?- means “Do you feel O.K.?”

Sensory Issues In The Classroom



I was asked to observe Marcos* in his third-grade class. His parents were facing an expulsion from school if his behaviors didn’t improve, and his teacher was overwhelmed by him. She wanted me to know that Marcos was very well loved by herself and his peers. I came into the classroom and quietly moved to the back of the room with my clipboard.

Marcos required constant redirection and engagement. Marcos defiantly refused to follow directions. In fact, even simple directions like, “Let’s stand up and stretch” prompted a collapse in his chair followed by exaggerated and agitated sounds. When he was asked to put his journal away, he refused, launching his pencil across the room and clutching his journal to his chest. When instructed to be silent, he hummed loudly and tapped his markers on his table. The teacher reminded him again to be quiet, at which point he pulled out a book from his desk and started to bang it against the desk over and over again until the teacher took the book from him. During carpet time, he hugged his knees and rocked back and forth, disturbing other children’s space and concentration. Every behavior the teacher warned me about, I saw.

However, I also saw much more. I saw a very discouraged little boy who was doing his best to succeed in a classroom that was very over-stimulating for a child with sensory issues. I saw a child that was constantly being rejected by peers. I heard from almost every child in the class during my observation, “Stop it, Marcos! Move, Marcos! Quit, Marcos!” . I saw his little face fall when he picked a snack buddy to sit with and sat so close to him that his snack buddy said, “Marcooos, move!”. I observed that every transition was hard for him, and I counted 65 transitions in two hours. With each one, he struggled. He was always initially resistant, but usually by the end of the activity, he was moving along nicely, only to be given another transition.

I saw that he asked to use the bathroom often, and he stayed gone until the teacher sent a classmate to find him. After each potty break, he experienced a small window of time when he needed no redirection. I saw that the teacher, although very nurturing, was not structured. She was so overwhelmed by him that she was very reactive with him. She was very kind and very overwhelmed. She used words and phrases to describe him like defiant, bad choices, decides, stubborn, difficult, and uncooperative.

My words to describe this same sweet little guy were discouraged, lonely, sensory- seeking, eager to please, stressed, unable to transition without support, overwhelmed, and doing the best he could with the tools he has. If we see children as having positive intentionality, then it would completely change the way we treat children.

Sensory interventions in the classroom make a huge difference for kids. Many teachers will add sensory support even without an IEP. There are many sensory tools that can be added without causing any disruption. Some examples of these are as follows:

  • Elastic bands wrapped around the legs of children’s chairs. Children can push their feet against them.
  • Seats that move: Hokkis, T-stools, exercise balls, etc.
  • Letting the child wear Chewlry: sturdy bracelets and necklaces a child can chew on.
  • Providing support during transition: “Changing activities is hard, isn’t it buddy? You can join us in a minute when you are ready.”
  • Providing an area where the child can retreat: a small pop-up tent, a bean bag, or even in a different location like the library.
  • Providing a child with extra recess time or structuring his/her recess time more.
  • Sticking different textures to the bottom of the child’s desk: felt, Velcro, and silk.
  • Providing all the children something they can hold: for example, a 6” soft ruler that all the kids can use when they sit down to make sure they have enough space between them and the child next to them. This is a great tool for standing in line as well.

If I can shift the way teachers view misbehaving children, this goes further than any list of suggestions that I can give to a teacher. A teacher naturally has more patience for a child “who can’t” rather than for a child “who won’t”.


*names and identifying information have been changed

Are Individualized Education Plans (IEP’s) Necessary ?



My IEP journey started with my own child. I can remember asking for an IEP as we were going into kindergarten and being denied. I was told that the school had to experience at least 2 years of impaired cognition or behaviors in order for my son to qualify for an IEP. I remember being frustrated, shamed, and somewhat astounded. I guess 5 years of my own experience as a parent and a Ph.D. in Psychology did not qualify me to make that determination. They must have thought my child fell out of a closet with lunchbox in hand and backpack on at 5 with no history or past experiences. I remember the minimizing statements, “Every parent worries about their first child.”, “Most children do so much better than parents expect.”, and “Kindergarten is designed to be a stepping stone into elementary school.”.

Here is what you need to know about IEP’s.

Schools have a limited number of resources and manpower.

There is always someone at the IEP, typically a principal or vice principal, who will protect the school’s resources with all of his/her authority. As much as you love the school your child attends, and as much as you love his/her teacher, you need to understand this dynamic. Their goal is to use the least amount of resources and offer the least amount of accommodations as possible. This is not because they don’t care about your child. In fact, many IEP meetings are full of professionals that do care about your child, but your child is not their first priority.

Your first priority is to advocate for your child.

No one cares about your child more than you do. In fact, if your child had a line of fans, you would be at the front of the line. Some of those fan lines start and end with the parents, especially for the most difficult kids I work with. I believe shame is one reason that parents have a hard time advocating for their children. They experience shame that their child is misbehaving and needs so much of the teacher. They experience shame every day as they open their daily report folder and see all the misbehavior for the day. Do not let shame immobilize you. Advocate anyway. With the right support, a child will not have as much misbehavior. In fact, your child’s misbehavior indicates that the school environment is outside of his/her window of tolerance.

Encourage your child’s teacher.

The teachers do not have any authority over what goes into the IEP, and some schools don’t even give the teachers a voice (even though they are always present). Most teachers that I have worked with really care about your child and agonize over their learning and behavior. They stretch their own resources to meet your child’s needs and often will accommodate without an IEP mandate. If your child has a really tough day at school, encourage the teacher. Sometimes a quick email saying, “I am so sorry. I know how hard he/she can be alone. I can’t imagine meeting the needs of a whole classroom.”

I had one teacher call me to apologize for being short with my child. The teacher was in the wrong and yelled at him for a very small infraction. My son cried. The teacher called and said, “I am so sorry I did that.” My response was, “Everyone gets to have a bad day. Thank you for loving on my kids every day.” Give the grace you want others to give you.

Don’t ever attend an IEP meeting alone.

My mom is a retired teacher and a huge advocate for my child. She has attended all but one IEP meeting with me. I will never forget that meeting. Her presence at such a vulnerable event makes me bold, articulate, and thick-skinned. Her absence stripped me of armor and left me feeling very vulnerable. I remember someone at the IEP saying to me, “The problem with you is your low expectations of him; if you expected more of him, he would do better.” I was speechless, and then I just cried. I responded in a fumbling way that was not bold or articulate. I cried most of that meeting, and the ironic thing was that things were actually going really well at school.

Hire an IEP advocate.

No matter how many IEP meetings I have attended for my own child or the children I work with, I am not an expert on IEP laws. Many parents have confidence in their own knowledge of the law and their rights, and they don’t feel the need to hire an advocate. However, if you have attended as many IEPs as I have with and without advocates, you would know how differently meetings go when there is an advocate there. All of a sudden, the fan line for your child grows by one, and this one person knows exactly what rights your child has and is determined to get those for your child. This person has not experienced any immobilizing shame.

I have had parents refuse to use even free advocates, afraid that they will make the school angry. When you have an advocate, all of a sudden the school no longer gets to guard its resources. It must figure out how to meet your child’s needs. And, yes, this might make the school very uncomfortable because its first goal of guarding its resources has now become non-primary. These meetings look and feel very differently. All of a sudden, the accommodations that the school said were impossible get added to the IEP

Some examples of these are the following:

  • This child will never miss recess; instead, she will have a quiet lunch in the library.
  • This child will not be suspended for behaviors that are non-aggressive and related to her condition such as forgetting to turn in assignments, speaking out of turn, not sitting still, etc.
  • Daily notes will be sent home to parents about all homework assignments.
  • Educational assistants will help the child organize her back pack daily.
  • The child is allowed to have snacks with her all the time.
  • The child gets to participate during her own recess block and another class’s recess block to meet her movement needs.
  • The child will have no homework sent home.

If your child is being punished for behaviors that are beyond her control or is being held to the same standards as other children without IEPs, you need an advocate.

Wouldn’t it be easier to just put my child in private school?

While there are certainly some private schools that were established specifically with at risk children in mind, most were not. The effective schools that are for kids with learning differences and behavioral issues are very expensive. If you have the money for one of those schools, then your child may receive better support. However, most families cannot afford this type of education which often compares to college tuition in cost.

Most private schools are smaller schools with fewer resources than public schools. Often the teachers in private schools are not licensed teachers. Most private schools don’t have occupational therapists, physical therapists, speech therapists, behavioral psychologists, or even school counselors. Private schools are not obligated by law to accommodate for your child. If your child is in a private school, there is almost no chance that your child will get an aid unless you hire one.

I have many times recommended that the kids I work with go to specific private schools that I believe can meet their needs. However, I don’t believe that a private education is always a better education.

My child is smart. He doesn’t need an IEP.

Learning Disability or Difference – any of various conditions that interfere with an individual’s ability to learn and so result in impaired functioning in language, reasoning, or academic skills and that are thought to be caused by difficulties in processing and integrating information. (Miriam Webster)

I have often encouraged clients to pursue IEP’s for their children and hear the above statement frequently. IEP’s can even be designed for gifted children who need support with organization, socialization, etc. My son is very, very intelligent. I believe that he will be a successful adult with a successful career. In fact, he is a bold entrepreneur. He made more money performing a 90-minute, street-side magic show at 10 years of age than I would have made babysitting an 8 hour day at 17 years of age.  Being bold, talkative, loud, and engaging sure come in handy when you are doing a magic show and do not come in handy during reading, writing and arithmetic. Having an IEP does not mean that your child is not intelligent, but it does mean that he/she needs support in a traditional learning environment.



Expectations are resentments under construction.” (Anne Lamott)


Did you know expectations are contagious? Somehow our expectations of our children change depending on who we are with and what we think their expectations are of our child. When Grandma is over, all of a sudden it is not O.K. to throw the ball in the house or watch that PG-13 movie, even though neither of these things would be a big deal if she wasn’t visiting. Or maybe that friend is visiting with her three children who just sit and grin, and all of a sudden you are furious your children are jumping on the furniture. Why aren’t they just sitting and grinning like your friend’s kids? Don’t they understand that our expectations change for them depending on who we are with? No, they really don’t. It takes fluid social reasoning to understand these changing scenarios. Most kids don’t have these skills until they are teenagers, and some much later. When children don’t meet parents’ expectations, they experience anger or shame. It creates a rift in the relationship.

I can remember one Mother’s Day years ago that was full of unmet expectations that were constructing resentment toward my little guy. It wasn’t that his behaviors were so horrible; it was that my expectations of how he should behave on Mother’s Day were unrealistic. It was Mother’s Day; good grief, I just woke up thinking, “Today is going to be amazing!” I had the day all planned. We were going to take a long stroll around the lake, holding hands and walking calmly. We were going to point out wildlife on the way and learn something about the animals’ habitats. Then afterwards, we were going to eat lunch out, where everyone would “ooh” and “ahh” at my beautiful and well-behaved children. Why on earth I expected this in a season of our life where every day was so hard, I have no idea, but I just knew that everyone would understand how sacred this day was and behave.

Instead, this is how the day went. We chased our little guy along the entire three- mile trail. We yelled, “No! Stop! Don’t! Quit!” about 300 times. It happened to be a day when lots of deer were out. All along the trail there were small groups of people standing together pointing at the deer they saw. Each time my son saw a group of people, he ran towards them screaming and threw whatever he had in his hand at the deer. Of course the deer and crowd scattered, murmuring under their breath about “out of control children”. We should have given it up and called it a day, but we went on to have an equally disregulated lunch out. I was so angry at my little guy the whole way home. I resented the fact that he couldn’t behave just this one day. After I put the kids to bed, I had a good long cry. The day wouldn’t have been so hard if I hadn’t expected so much.

If, instead of expecting the day to go smoothly, I had expected that things would be hard, the day would have gone very differently. I still may have ended the day in tears because in the process of changing your expectations you grieve, but it would have been peaceful and without resentment. If I had expected that in all his excitement, he would be even more disregulated than usual, then I wouldn’t have planned several activities after expecting him to be good in church. It was too much for him. We have learned and grown. Now Mother’s Day is low key for us. We pick up food instead of eating out. We stay away from crowds and instead pick a movie everyone can enjoy together

Parents tell me all the time that their kids sabotage special events. This is worth a post all on its own, but I think one of the reasons parents feel this way is because their expectations of special events are so different than their expectations of a regular day. If it is Christmas, then we expect our kids to be appropriately grateful for all the thought we put into their gifts. On their birthday, we expect them to thank each person for their gifts and claim that they love every gift even if the super soaker Grandma got them is so much more fun than the board book they got from their friend.

Some parents hear this and cringe. After all, if you don’t expect anything of children, they won’t live up to their potential, right? Isn’t it true that children only behave as well as we expect them to? There are, of course, expectations that are important and set a standard of how we treat each other. But I will ask you to ask yourself some different questions: “What expectations are getting in the way of my relationship with my child? What would our relationship be like if that expectation was completely out of the picture?”

Healthy expectations are dynamic. They change based on what your child’s needs are in the moment. I expect that when my children are overly tired, overly hungry or overly stimulated they will snap at each other and at us. Snapping at each other would be addressed differently in this situation by meeting their physical needs first. If they snapped at each other at home when they were well rested and satisfied, then I would address speaking to each other with respect. Healthy expectations enhance relationships by creating appropriate boundaries without resentment and shame.

Maybe you expect an introverted child with poor social skills to be more involved in youth group or to be more socially engaging. Maybe you expect your musically gifted child to follow in your footsteps in the music industry, but all he is interested in is sports. Maybe you expect your child with learning disabilities to try harder, do better, and stay motivated with academics. Maybe he is doing the best he can just getting by. Maybe you expect your child to behave in school, but she doesn’t have the support she needs in that environment to behave. If unmet expectations fill the atmosphere of the relationship, then resentment grows. Children start to feel shame and believe that there must be something wrong with them. We cannot sacrifice our relationships with our children because of our expectations of them. As parents, we have this incredible influence over our children. They will forever carry inside of them the feeling of “being enough” or “not being enough” largely based on whether or not they met our expectations. I believe that some of the most toxic situations start with unrealistic expectations. The unhappiest families are those where parents have expectations of a child that the child cannot meet.


The Power of Your Story




“You either walk inside your story and own it, or you stand outside your story and hustle for your worthiness.” – Brene Brown

“Honey, can you make me a cup of coffee?” my husband asked.

I was overcome by a wave of anger, and my reaction was automatic. “I am not your mother!”, I responded. “Get your own cup of coffee.”

I was not responding to the situation. I was reacting to a wounded part of my story. My husband is the type of man who will spend 15 minutes fixing himself the perfect sandwich and then give it to the first person that walks in the room and looks hungry. He is always fixing us treats.

I was only 19 when we got married and still making sense of my own story. I can remember as a child watching my dad rattle his ice cubes, and my Mom would hop up and get him a refill of his sweet tea. I remember when I was about 9,and he turned to me and rattled his ice cubes. He did it again trying to get my attention. I wondered what on earth he was doing. Surely, he did not expect me to hop up and get him a drink, but that is exactly what he expected. A wave of anger came over me, and I said, “Don’t you ever, ever rattle your ice cubes at me!”

In making sense of my own story, I understand that the fact I had a home where I was safe enough to say that and not get smacked around was an important part of how effective I feel as a person. He never rattled his ice cubes at me again. I had been effective and could change my story, but I had to fight for it. I understand now that I don’t have to fight to be effective or to be heard.

Adults often spend much of their adulthood trying to make sense of their story. “Why am I afraid of commitment? Why do I always end up in these relationships? Why don’t I trust anyone? Why am I so controlling?” When a reaction is stronger than the situation warrants, then we are reacting to some wounded part of our story. Our children are the same way. If a part of their story says, “I am not wanted”, then they will react strongly to seemingly small redirections as though it were heavy criticism. Can you imagine what a gift it would be to help children create meaning in their story from the time they are old enough to understand their first fairy tale?

I worked with one little boy who worked double time at keeping his Mommy very busy with him. In fact, whenever she would start getting focused on one of his siblings, his needs intensified. All of a sudden, he needed help unbuckling his pants to go potty, was desperately hungry, or needed to tell her about his day. He would do this with such an urgency that it made his mom feel manipulated and controlled. She tried to give him one-on-one time, but this seemed to only intensify his need for her as soon as they rejoined the family. She felt that he was insatiable.

I asked the little guy, “Buddy, I have noticed you really feel like you need to keep your Mommy very busy with you. I wonder why you are scared when she stops being busy with you.” He responded, “When she isn’t busy with me, I am not a real boy anymore. It is like I am invisible.” Karyn Purvis, the author of The Connected Child said, “The message of neglect is that I don’t exist.” This child was reacting to the wounded part of his story. He didn’t even know his story. Once we started making sense of these wounds, his fears diminished.

Often parents spend a lot of time shielding their children from their children’s own story. Interestingly, later in life, people seek out counseling to make sense of that very story they were shielded from. Dan Siegal said, “Making sense of your own story is the best thing that you can do for your children.” I think the reason parents want to shield their children is because they are trying to protect them from the “hard” or “shaming” pieces of their story. However, shame lets down very deep roots in dark places. When these pieces are brought to light, then they can be made sense of.

Adoption is complicated. There are many complex levels of an adoptee’s story. It gets even more complicated if neglect, substance abuse, and/or physical or sexual abuse are a part of a child’s story. Parents desperately want to shield their kids from these hard pieces of their story. Some parents avoid labels and refuse the idea that adoption issues exist, instead thinking it is just a part of the child’s inherent personality.   Let me be clear. Adoption is trauma. Trauma can change the way our brains develop. Trauma has the ability to cause certain genes to express themselves.

I work with children in helping them understand their story. If they have special needs as a result of being neglected or abused, we talk about that. If they have trouble trusting their caretakers, we track this back to the pieces of their story where they were not able to trust their caretakers.   I do this even when children can’t remember. There are two types of memory, implicit and explicit. Implicit memory is the memory held that you don’t actually have words to describe. I work with many children adopted in infancy who don’t remember being hungry, and yet they struggle, feeling like there is never enough food. Did you know that hunger can be experienced in utero? Children stress about food, hoard food, and obsess about food.   They don’t know why food has such a strong hold on them.

Explicit memory is a memory you have words for such as, “I always get nervous driving around this corner because 2 years ago I had a wreck right here. “

I have worked with many children that have implicit memories about the time of the year that they were relinquished. These children struggle the most during a certain month of the year. Some people refer to these as “ traumaversaries”, also known as “anniversaries of trauma”. I have children that I see the same month every year, and then I don’t see them for the rest of the year. Most of the time, they come to me without understanding that struggling during this month is part of their story.

It is important to note that helping make sense of a child’s story is not the same as telling the child’s story to everyone you meet. It is sad that even though they are the main character in their story, they often know less about their own story than peripheral figures like acquaintances. Discretion must be used when sharing pieces of the child’s story. Even when our kids are older, we need to ask permission before sharing their stories. It is theirs to share. There is a proverb in the Bible that says,

“Do not throw your pearls to pigs. If you do, they may trample them under their feet, and turn and tear you to pieces.” (Proverbs 7:6b)

Our stories are our pearls. If given to the wrong person or at the wrong time, they may be trampled under people’s feet. If we share our story too many times or too soon after meeting someone, we end up feeling open and exposed. Most of the time when people come to me, it is because of “my story”. They don’t come because of my education or my professional experience. They come because somewhere along the way, they heard my wounded story, and it gave them hope.

Find Water


“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” Albert Einstein

My husband repairs airplanes and really is brilliant at fixing things. If I spent 8 hours a day in the hanger expected to learn to fix airplanes, I have no doubt in my mind that I would feel stupid before long.   I would feel clumsy and awkward. I would compare myself to people like my husband who seem to know what is wrong with something just by listening to the engine from across the room. I would think there must be something wrong with my ears, my hands, and my brain because this fixing planes business is just so hard for me. Many children start feeling inadequate and stupid in school because they learn differently than other children.

My children are feeling the pressure of TCAP tests that are coming up soon. They have been well indoctrinated by their teachers that there is nothing in life more important than good scores on TCAP. One of my kids was told, “Before the middle school knows anything about you, they will have your TCAP scores.   Your TCAP scores are your first impression for the middle school. They won’t know what you look like and they won’t know your name, but they will know what your TCAP scores are.” It is no wonder that performance anxiety is becoming a huge problem in America with more children in elementary school taking psychotropic drugs for anxiety than ever before.

I think every child needs to hear the following: “You are so much more than a number on a page. This test says something about you, but it is only a very little part of who you are. It doesn’t show how much you love to learn and explore. It doesn’t show what a great leader you are. It doesn’t show how much you know about things you are interested in. It doesn’t show how quickly you make friends or what a loyal friend you are. It doesn’t reflect the joy you bring into a room when you walk into it. It doesn’t show or predict your ability to be hugely successful in life. It is not important. IT IS NOT IMPORTANT. You are so much more than the sum of your parts.”

Every child is gifted in some way. The problem is that when you decide to judge every child by his/her ability to climb a tree when some children are fish, then that child will always feel stupid.  Some of the most creative, accomplished people in history struggled with learning in a traditional setting. Today they would have been labeled as ADHD, on the spectrum, learning disabled, dyslexic, etc. George Washington could hardly spell and was thought to have dyslexia. Albert Einstein was thought to be mentally retarded by his own parents. Thomas Edison was taken out of school by his parents and homeschooled because he had what today would have been described as ADHD.

On our way home from church one day, my husband said, “You have to come and watch Jonny* teach Sunday school with me. He is amazing.” Now if you knew my husband, you would know he doesn’t express very much excitement, and where I use words like “amazing” and “fantastic”, he uses words like “ok” or “all right”. I was intrigued and went to watch him the following Sunday. My little guy, who struggles following the rules in his own Sunday school class, was truly amazing. He anticipated the children’s needs and met them consistently. He was fair and paid attention to all the kids, focusing on the ones that were acting out the most. He was patient, helpful, and gentle. He was in every sense of the word “the perfect Sunday school helper”. I was so very proud of him. He has told me for a while now that he wants to be a teacher when he grows up. I tell him he is going to be an amazing teacher because he knows how hard it is to learn, and he loves learning anyway.


We need to find bodies of water for our fish. We need to find deep pools, clear streams, and wide oceans. They need to have places where their gifts shine out and are exposed to all. If your child loves to fix things, then buy her tools and old appliances at goodwill for her to repair. If your child is great with younger kids, then volunteer to teach a Sunday school class with him as your helper. If your child loves animals, then let her take part in training a service dog or volunteering for the humane society. Just imagine being a child who struggles to learn and/or gets in trouble frequently at school. If we don’t give these fragile children a place where they can show off their skills and find purpose, then they will despair. They will lose their motivation. I have parents telling me all the time, “He just doesn’t care. Nothing motivates him.” I believe those children have just been at the bottom of the tree for too long, flopping around wondering what is wrong with them. They seem like they don’t care because they know they can’t climb that stinking tree. Find a deep, clear pool for that child, and you will see the life spark back into their day. You will see an awakening in motivation.

*names are changed for privacy issues

Control and Fear


Control is always about fear. As fearfulness increases, so does the need to be in control. This is true of everyone, whether he is two or eighty-four.

I was talking to a sweet Momma that I was working with in trying to help her identify the fears behind her need to be in control.

“Control is about fear,” I said.

“I disagree,” she responded. “I can think of plenty of examples where I needed to be in control, and it had nothing to do with fear.”

“I would love to hear them.”

“Well, there is a tree in our yard that is easy to climb, but very tall,” she began. “My son is not allowed to climb past the first branch because his coordination is very poor, and it is not safe.”

She then paused and said, “That wasn’t a good example.   Let me give you another one.”

After she gave me about four such examples, she sighed and said, “You are right. The more fearful I am about a situation, the more controlling I become.”

A mother who is very controlling is a mother who is very afraid.

A child who is very controlling is a child who is very afraid.

The child who tries so hard to dominate her home obsessively will ask, “What are we doing next?”, “Why are you taking this road home?”, “What are we having for a snack?”, or “What did you pack for my school lunch?”. For those of you who haven’t had a child struggling with fear, these questions seem very simple and easy to answer. However, for a child struggling with fear, the questions are incessant and dominate the mood of the home.

If we call this child controlling, then we are going to treat this child very differently than if we call this child fearful. Be very careful how you talk about your children because words have enormous power.


My child says… If I believe my child is controlling, I respond by saying…… If I believe my child is fearful, I respond by saying…….
Why are you taking this road? Take the other road! When you are old enough to drive, you can take whatever turn you want. You do not get to decide what road Mommy takes.  Buddy, you are worried when Daddy takes a different turn than usual. It makes you feel like you don’t know what is going to happen next. It is my job to keep you safe. I promise I will do that. 
What are we having for dinner, snack, etc.? – for the 100th time. I don’t know what we are having for dinner. Why does it matter? I am not a short order cook. You worry a lot about food. I think your body remembers being hungry, and you never want to be hungry again. Why don’t you pack some snacks in your backpack and carry them with you? I don’t think you will worry as much about food if you always have a snack with you.
I don’t want Daddy to help me with my bath. I want Mommy. Mommy can’t always help you with your bath. Mommy is tired. Daddy wants to spend time with you. You don’t always get what you want. Mommy has a special way of doing things that is different from Daddy. When things are different, you worry extra, don’t you, Buddy.



A child who is in control feels even more anxiety. So even though our responses are very different when we are dealing with a child we call “fearful”, the outcome doesn’t always have to change.   Just because your child is fearful doesn’t mean she gets to decide what turn you make in the car, or what to eat for supper. Too much control will make the child more fearful. However, identifying her fear and supporting her right where she needs your support will help her relinquish control.

“At Risk” children are often fearful children. Even if they don’t have explicit memories of neglect or abuse, their bodies hold implicit memories of that trauma. If children have ever been truly hungry , even in utero, then these children will struggle with wanting to control food. If children have ever been neglected, then they struggle feeling like there is never enough of anything for them. They feel like they have to fight to be seen, literally. If a sibling is in the “limelight” for whatever reason, these children feel terrified, invisible, and compelled to turn all attention back to themselves, usually through negative behavior.

When we parent out of fear, we make very bad parenting choices. We lose the ability to respond and start reacting automatically instead. The next time you find yourself needing more control of your kids, ask yourself “What am I afraid of ?”