Ben’s Story

As told by his mother, a special educator

Today’s guest author is Jami KihlstadiusJami is a mother and special educator living in Georgia.

My son, Ben (not his real name), has emotional and behavioral disabilities.  He has extreme generalized anxiety which causes his brain to become “flooded.” Because he also has a diagnosis of developmental delay, his prefrontal cortex, the area in which emotional regulation lives, has not fully developed. These issues greatly impede his ability to regulate emotions.  He is 16, but more like 12, emotionally.  He also has Sensory Processing Disorder and feels emotions, feelings, sensations, deeply.  Additionally, he suffers from depression, ADHD, dyslexia and processing deficits.  Ben doesn’t necessarily “look” disabled or special needs.  

He doesn’t appear as though he struggles with these issues.  He is a handsome, tall, young man that enjoys his sense of style, listening to rap music and watching YouTube videos.  He looks like a regular teenage kid.  These are invisible disabilities.  Internally, Ben is living his version of a personal hell.

Middle School is where the shit hit the fan.  Excuse my French.  But this is when the exclusion and restraining began to happen.  And isn’t that how it starts?  I mean seclusion then restraining?  My son wanted to be social, wanted connection with peers and adults.  But he didn’t necessarily have the skills to do so in appropriate ways.  He was desperate to be “popular.”  Disruptive in class and calling out were regular antics.  He would goof off, trying to get a laugh out of his peers.  His peers quickly learned how to “poke the bear” and my son took any dare. This was all, what the teachers called, “attention-seeking” behavior.  But was he really connection-seeking and just didn’t have the skills to execute it?  The teachers couldn’t handle him.  

He was eventually isolated, put into a classroom alone with several teachers hovering over him like hawks ready to swoop down to their prey when they needed to redirect him.  Imagine what that is like for a child with high anxiety.  To be constantly watched, ready for you to mess up.  That, in itself, was a guarantee that he would.  The teachers would block the door with their bodies when he tried to leave the classroom.  When annoyingly tapping his pencil or distractingly fidgeting, words such as, “put down the pencil or I’ll put it down for you,” were used.  One afternoon, in 6th grade, the school resource officer met him as he left the building to walk home.  “Come with me, Ben,” he directed sternly.  Ben had no idea what he’d done until he was told to get in the back of the police car, which he did.  He learned, in the back of that police car, that having his hood up (from his hoodie sweatshirt) was a sign of gang affiliation.  (We lived in an affluent suburb of Marietta, Georgia called East Cobb –not a gang to be seen).  Unfortunately, I think he learned more than that that day.

The constant phone calls, multiple daily emails and endless IEP meetings proved that these teachers, this school, could not handle my child.  In the last IEP meeting we had at the middle school, when Ben was in 7th grade, the “team” determined that he was to be transferred out to a Georgia Network for Educational and Therapeutic Support (GNETS) school called Haven.  GNETS schools are known for having a direct “school to prison pipeline.” It was in a GNETS school on November 15, 2004 where 13-year old Jonathan King came to school not wearing a belt.  A teacher gave him a multicolored rope to keep his pants from drooping.  That day, as usual, Jonathan was placed in the time-out room.  Although he had twice threatened suicide, the teachers allowed him to keep the rope belt when he went into the isolated room. It was with that rope, that Jonathan committed suicide—in school—in the seclusion room. I couldn’t, as a Mom allow this for my son.  Did I mention that I was also a special education teacher in the exact same county school district Ben attended?  It was time for something different.  For Ben and me.

Hope, Truth, Love.  That was the motto of the private school we sent Ben to next.  It seemed promising.  It was hopeful.  It seemed like the right place for him at the time.  But it wasn’t long after he had been there that restraining began.  They would call me, “Mrs. Kihlstadius, we have Ben in the calming room again.  He tried to leave our classroom after being asked to sit down multiple times.  He is having to be restrained by 3 of my staff.  He is starting to calm down now and he’s not hurt in any way.”  And these calls became more and more frequent.  If I know anything, it’s that restraint begets restraint.  Ben became more and more aggressive.  It was happening at home, too.  Sending him away to a therapeutic boarding school seemed to be our only option.

If I know anything, it’s that restraint begets restraint.

Ten uncertain months later, Ben returned home and I had long left the school district to teach at a private school that serves children with learning disabilities and other comorbid diagnoses.  Looking back, I wouldn’t have sent him.  Sending him away piled trauma on top of trauma.  The therapeutic boarding school used punitive consequences which basically “forced” the kids into compliance.  Seclusion and restraint were part of their repertoire of strategies. It didn’t turn out to be as “therapeutic” as we were led to believe.  

But he was home now, doing much better, and I had the perfect solution!  He could go to my school; the one I now taught at!  We had understanding and caring teachers.  Our teachers understood anxiety and how it can present differently in each kid.  Our teachers believed and practiced connection with students first, before all else and my son fit the profile.  Driving to school together would give us some good bonding time, and I would be there to help his teachers understand his difficult and tumultuous past.  Except, that my school wouldn’t accept him.  The admissions committee turned him down even after he had a successful 2- day visit.  They were worried about the fact that he had been in a “therapeutic” boarding school.  They didn’t want to “risk” it.  Telling Ben this news was hard for him.  He didn’t understand.  He thought he did great on his visit and was actually excited about school for the first time ever.

We didn’t have many choices after this.  There are not many trauma-informed schools in our area.  I promised Ben that he would never be sent away again.  A boarding school was not an option.  He would go back to his home school and attend high school.  Except, that he couldn’t.  At the last IEP meeting, 2 years prior, before pulling him out and putting him in a private school the “team” had determined that Ben’s placement needed to be Haven, the GNETS school.  My worst nightmare for Ben was coming true.

The bus picked up Ben for Haven (the GNETS school) at 6:15 am.  School was out at 3:15, but he sometimes didn’t return home until 6:30-7:00.  I don’t believe in luck, but if I did, I’d say we got lucky.  I knew an administrator there from my past years of teaching in the county school district.  She saw the good in Ben.  She saw his strengths and fought hard for him.  He was transferred out of Haven back to his home high school after a few months. Maybe this was a kid that could be saved from the school to prison pipeline.  The Universe was looking out for Ben when he went to that GNETS school.

I don’t know what the future holds for my son.  So much past history.  So much trauma.  I don’t blame it all on the teachers or “the system.”  His Dad and I went through a divorce a few years prior to all of this which was hard on him.  I do my best not to blame myself.  After all, we all do what we think is best for our kids at the time.

The light has vanished from his eyes. The spark I used to see when he was a tow-head little guy isn’t there.  He’s failing all of his classes at the high school.  I haven’t heard his infectious laugh, the one that always made anyone around him laugh too, in years.  But, he has recently gotten a part time job at a local restaurant as a busser.  He’s also finally passed his driver’s permit test, and he is happy about that.  I do know that I’ve had to let go.  I’ve had to let go of my anxiety about him.  I’ve had to let go of the vision I had for his life and accept what is now.  I’ve had to let go of my guilt.  I’ve had to let go and just love. I will be here for him and just love.

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