Managing the Unmanageable: 4 Life lessons from an IEP meeting

Everything is a lesson and everyone is your teacher should you choose to listen and learn.

I had an IEP with a mother whose son is severely autistic. I am not talking about TV autism, where the child is socially awkward and exceptional with numbers, that has its own challenges.

I am talking about severe autism. Non-verbal, self stimulating, sensory seeking, self directed with communicative intent only to request desired items.

This particular student was on the hurricane end of the spectrum. He is an endearing kid, full of energy and humor. He enters the room like a rolling dervish and transforms it into a pile of chewed up crayons, crumbled paper and empty play doh containers in a manner of seconds.

He has a rich gestural system and can display novel emotions with a single point and glance. It is a testament to the power of subtle expression and just how profound our ability to communicate and perceive is. In fact, this meeting is being held to add a desperately needed communication device to his profile.

I’ve been to hundreds of meetings. I know what to expect. I write my progress reports and my

goals. I have my prescriptions and my plans. I know what I am going to say without having to plan for it.

Avoid preconceived notions

The truth is, we truly do not know what happens at home and we never will. The same way you don’t ever know what is going on inside a person’s head. You have no idea of the struggles of their life- even if you know some of the story. Everything is a snapshot. We get maybe a glimpse, but it is never enough to tell. We only assume.

We create our perceptions based on the stories that people tell and we assess them through the lens of our own bias.

It is an easy trap to get caught in, because it is effortless. The mind wants to make sense of things, so it labels them and puts them in folders. The mind wants things easy and in order. You stop thinking critically when things are “easy”.

To avoid this rut, you must actively remind yourself that your perceptions are limited to your own experiences. Don’t assume you know…

Listen to understand, not to respond.

Mom was curious and excited to be a part of the meeting. She had spunk. She was real and she didn’t have time or patience for anything else. She was strong but desperate. She knew how demanding her son was, she knows it better than anyone. We were lucky that she was realistic, she wanted to understand as much as she could get from us. The need creates the desire to learn.

People respond in funny ways to strong confident people. Some become defensive and engage in a zero sum competition for moral superiority, some are intimidated and become meek and submissive.

I simply try to listen. I don’t just want to hear what they have to say, I want to understand what they are saying. I want to see where the gaps are and where I can help fill them in.

If I assume that this person understands all things I do, we cannot make progress.

Mom wanted to know why her son insists on turning her house upside down on a daily basis. He will take a 50lb bag of rice and disperse it throughout the house, eating raw handfuls as he stashes it in the drawers, sheets and any other place he can cache it for later use.

To make matters worse, his sleep schedule permits him to pass out early and wake up in the witching hour bordering on painfully early and the dead of night. He is starting his day when the Navy Seals are still in their deep REM cycle. 

Be succinct – Apply the quality not quantity principle to your words.

The greater the question, the more the asker will listen for a response. This is true, but we still must factor attention as a limited resource.

For example, Mom wants to know why her son “eats like such a mess” only using a fork when he wants to steal food from her plate.

Sensory integration is difficult to understand. Most professionals I work with have no idea about what this means. They throw the word “sensory” around the same way my two year old daughter uses the word poopy. The word exudes a response, but it doesn’t match its meaning. It has become a rote phrase.

But conceptually, it is an axiom that explains how cognitive resources are allocated. Sensory integration that is, not poopy. This is a pivotal question to Mom’s understanding.

But how do I explain this to Mom? Education level and income mean nothing here. A person has a question and you have an answer. But your answer doesn’t mean anything if it is not understood. Your time is short, they can only pay attention if they are following you, if they understand what you are saying.

Being able to break down complex information into digestible pieces is a super power.

Here was how I answered:

“We have to understand that he does not experience the world in the same way we do. His senses feel things greater than we do, or sometimes not as much as we do. But he often experience things in a completely different way.

For example, the way he eats a pickle. He likes to crunch the sides off then squish the middle between his fingers and smell it.

So Mom, he doesn’t see a pickle how we see a pickle, he sees a crunchy, briny, mushy, smelly, cold thing. He’s not just eating, he is experiencing his food. This is true for most of the things he does. Like the rice, or the play doh. He doesn’t see them as simple objects like we do, he seems them as a way of getting a sensation that he craves.”

The reason Mom understood was because I used examples. But not just simple examples, I broke it down in a sequential way that she could follow along. I didn’t assume she knew anything about sensory integration (because she didn’t) and I didn’t expect her to understand big words (like sensory integration, they are completely unnecessary.) I knew what she needed to understand in order for her to make sense of her son’s behaviors.

People learn what is relevant to them when they need to learn it. When a person brings that ambition to a situation, you have the task of putting things in a manner that will be understood. Be succinct, less is always more. You want value from your words, not a flood of fancy sounds.

Always be grateful - Never Complain

I’d be surprised if I got 2 straight hours of sleep in the 7 hour pocket of pseudo consciousness that describes the past 5 nights of my life. My kids have been up coughing and sneezing. The truth is, I am lucky to be tired. I am blessed that I can even perceive this as an inconvenience.

This is the most exciting time in human history to be alive. I have the distinct and invigorating pleasure of being able to write this for you to read. Some have it better, but many have it much worse. My problems would be blessings to most of the 7 billion people on this planet. Never lose sight of that.

Never complain. Catch yourself when start to and eat your words. I am honored that I was able to help Mom and her son in whatever limited capacity I could. But the most important lesson I am reminded of everyday is:

Be grateful for everything you have. Don’t complain.

It bares repeating, your problems would be someone else’s blessing.