Misunderstood

I am going to get really real with you.

This school year was the hardest year academically for Jack.

Yes, middle school is difficult for all kids. I understand that. But this is about more than middle school being hard. This is about communication, expectations, plans, structure, support, and whether or not a child is truly being seen.

I have been an educator for my entire career. I have a master’s degree in education in applied kinesiology. I taught in the public schools for 13 years and then went on to teach future teachers at the college level. I know education. I know systems. And I know when a system is not working.

Every day, I get to use my background in education through the work we do at Jack’s Basket. We have identified the gap in communication between those who give a diagnosis and those who receive one. We work every day to change that experience for families. It is important work. It is changing the world for our babies.

But this year, I have realized and experienced something deeply painful and exhausting on a different level.

The special education model is broken in many ways. I’ve known this for a long time, especially being on both sides of the table.  There are too many layers to write about in one sitting, but I have been exhausted by the amount of energy it has taken to convince administrators that their staff and students have been set up for little to no growth.

It has been a year of cueing people to pay attention to the current situation.

A year of saying, “The plans are not working. How are you adjusting?”

A year of asking, “Why are we making plans once a year in education and not adjusting them until a parent has to lose their ever-loving mind?”

Why does a parent have to escalate to the point of threatening to sue the district before administration hears loud and clear that there is a problem?  It doesn’t have to be this way.  

Jack’s behavior in middle school has been described in many ways: refusal, name-calling, attention-seeking, aggressive behavior, and more.

But is anyone asking why?

Or is the job simply to report?

Jack’s negative behavior has been his way of communicating. He has limited communication skills to explain how he is doing, what he needs, what is hard, what feels overwhelming, or what is not working. Add in his art of manipulation, a lack of consistent support, a case manager who has not been set up well, and staff who need more training, and it has been an incredibly difficult year.

It brings me back to the COVID year, when I was asking district administration to go to bat for our kids with additional needs and say, “It is okay if this looks different for our students than it does for the general population.”

Isn’t that the definition of equity?

Or is equity just a flashy word on paper, shared as values in a district board meeting, or meant to look good on a sign in a school building?

I am exhausted from helping others speak up to change the system.

I am exhausted from convincing people to have high expectations.

I am tired of hearing, “We just can’t do that.”

And I want to be clear: I do not think this is always because people do not want to do a good job. I believe many people care. I believe many educators are doing the best they can. I also believe many have not been set up for success with the training, tools, staffing, communication, and support they need.

But my problem with all of it is that much of this year has required our family to lead the attention toward any sort of change.

“This isn’t working. Why?”

And why have I felt like the only one consistently asking that question?

We have done the steps. We have followed the process. We have communicated. We have asked questions. We have tried to partner. There have been numerous meetings with the school, outside consultations, assessments, conversations, and attempts to better understand what Jack needs.

I do have hope that things are beginning to move in the right direction.

But hope does not erase the disappointment.

It does not erase the frustration of looking back on a year and wondering how much could have been avoided if people had paid closer attention sooner. If the plan had been followed. If supports had been in place. If the questions had been asked before the behaviors became the headline of phone calls, write-ups, and tally marks in a binder.  

In March, we started to see the administration begin to step up.

But why six months later?  

Why did it take this long?

That is the part that exhausts parents like me.

We are not asking for extra because we are difficult. We are asking because “extra” is often the very foundation of special education.

Our children need individualized plans, communication, structure, support, patience, and people willing to ask why. Yet so often parents hear:

“No, we can’t do that.”

“This is how it goes.”

But what if it does not have to be how it goes?

What if we listened sooner?

What if we adjusted faster?

What if we believed parents the first time they said, “This is not working”?

Because by the time a parent is sitting in another meeting, with another email thread, another outside consultation, and tears of exhaustion, they are not trying to be hard to work with.

They are trying to protect their child from being misunderstood for one more day.

And that is where this gets personal.

Because with tears down my face, I wonder how often Jack feels this same way.

Misunderstood.

Trying his best with the skills he has to communicate his needs, while the environment around him is not set up well to support him.

Only to be told, directly or indirectly, that he has to conform to how things are done.

That is his everyday.

Not mine.

And that truth stops me.

This summer season will bring a slower pace. Time to notice. Time to listen. Time to learn.

He needs that.

And so do we.