Years after I was called a liar, parents are still told they must be part of the problem

When my son was eight, the psychologist called me a liar.  Upon reviewing my son’s psychological test results, Dr. W said that either he was a very sick little boy or his mother – that would be me – was lying through her teeth.  Or at least exaggerating. I was rocked back on my heels, shocked speechless, angry and hurt, well you get the picture.

My son had just been given his third psychological assessment, this time by the school.  He was in his 4th hospital stay and we were all worried. The evaluation was done in a psychiatric unit where my third grader had been inpatient for two months and counting.  He sometimes saw things that weren’t there, believed he could float if he jumped from the tippy top of a swing set and talked often about the ways he would kill himself.  Every medication trial seemed to make things worse.  So here he was, missing Halloween and Thanksgiving, while his doctors and therapists tried to figure out what to do next.

The school hired an outside evaluator.  Dr. W gave my son the usual battery of tests (this wasn’t our first go round) including an IQ test, skills tests and projectives.  He also had me fill out some information including one test where you answer the same question asked in different ways.  First, it would ask you to rate, “My child loves playing outdoors” then several questions later there would be some variation like, “Playing outdoors makes my child happy.”

This was high stakes testing for me.  I was scared for my son.  I didn’t know what the future would bring.  I was hoping the school would agree that he needed a program instead of his regular classroom with a brand spanking new teacher.  So I answered the questions carefully.  Usually I remembered what I had written just a few questions ago.  I wanted to get it right.  The psychologist noted that I consistently reported behaviors that were very frequent and intense.  Since this was unusual, he wrote in the report for the school, either my son was very sick or I was “exaggerating the child’s symptoms.” In short, I wasn’t telling the truth.

Fast forward to today and here we are in May, trying to stomp out stigma for mental health month.  This has personally been my crusade for countless Mays and the 11 months in between.  Stigma comes in many forms in the lives of families whose children have mental health problems.  Stigma actually has three parts:  lack of knowledge, negative attitudes and excluding behaviors. Our children experience the “excluding behaviors” when they aren’t included by their peers.  It’s the parties they aren’t invited to or sitting alone in class.

Unlike when my son was small, there are now a great many parents who share their experiences and their heartbreak bravely and with honesty.  They are trying to combat “lack of knowledge.“ They talk about the bad school meetings, treatments that missed the mark, lost work days and high cash totals spent on items insurance declined to cover.  All that is terrible.  But it’s the stories of other people blaming parents that are the most heartrending for me.  That’s what stigma looks like.  That’s what stigma feels like.

Sometimes parents tell of children who see things that aren’t there or behave erratically like mine did.  Other children talk about wanting to die or bring up what death is like again and again. Others have outbursts that go way beyond tantrums and parents sometimes become the target of their child’s violence.  Like me, they are shocked to find themselves living this life.  Like me, they feel disbelief when they are blamed.

Tina, the mother of a teen daughter wrote, “I think if some clinicians didn’t have stigma issues, we would have been able to get my daughter diagnosed much earlier. Instead people were much more willing to believe that I was a terrible parent who was ‘causing’ my child’s outbursts and issues.”  She is not alone.  Parents are at first sure the error is with themselves.  If they had been more emotional or less, if they had explained more details or used more jargon, maybe they would have been believed.  Maybe they wouldn’t have faced “negative attitudes.”

Recently, a parent described how she recounted her son’s outbursts to a new therapist.  Her 14-year old was acting calm while she talked, even rolled his eyes a bit.  The therapist did not believe her.  She started jotting down notes of what her son screamed at her, what had happened to set him off and even how long the outbursts went on. She brought her notes in a few visits later.  She also tried different approaches to convince the therapist.  She was emotional, she was calm and once even tried being silent, only offering the notes.  It was only after she recorded a video of a particularly intense episode on her phone, with her son swearing, threatening and throwing things that the therapist sat up, focused and let her disbelief fall away.  “First, let’s figure out a safety plan,” she began.  “I have some other ideas, too.”

There are many therapists and evaluators who are stellar.  They are kind, empathetic and listen well.  I have known quite a few over my son’s life and they have been a frequent lifeline.  But just as a rage-filled driver might make you avoid a particular route for a while or rude salesperson can prompt you to shop elsewhere, you vividly remember it when you encounter parent blaming.  For a very long time.

 

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1 thought on “Years after I was called a liar, parents are still told they must be part of the problem

  1. My son and our family went through many battles with the schools. My son was in middle school we ended up having to go to court. He also had some severe health problems…. later diagnosed with Chronic Fatigue… For awhile he was taken away from us which was very traumatic for us. His little brother was told by school counselor His Big brother “Could go to school if “…He just tried harder. WAIT WHAT??? Luckily he was able to stay with my parents… but couldn’t leave the state and see rhe Diagnostic specialist he was scheduled to see in NY… TALK ABOUT A SCHOOL NOT BELIEVING US!!! Sadly the judge made it worse… I Felt like DSS was on our side. We were able to get our family back together. But my Oldest son only got thru 8th Grade for school.His Little brother fought tooth and nail to get thru HS… Getting a Advocate/Lawyer.
    Helped, and trying different residential and specialty schools.
    .

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