Tag Archives: blame

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

May 12th, 2020

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.

 

Tags: , , ,

Posted in Blog Posts | 1 Comment »

Saints and survivors

July 4th, 2011

We’ve all heard the statistics about the numbers of children who have mental health diagnoses, how they can lead to formidable problems in school as well as impact their relationships with friends and family. For some, the result can even be suicidal thoughts or acts.  It’s unsurprising that many parents can find these facts frightening and veer from disbelief to trying anything that might fix things.

I’ve known hundreds of families who attempted everything they could dream up to avoid having their child diagnosed with a significant mental health disorder.  Diane, a mom of four, had read that endorphins could counter depression.  So she went to Costco, bought a large trampoline and insisted her teen son work out on it every day.  He got fitter, but his depression got worse, endophins or no endorphins. Other parents have tried diets, herbal remedies and star charts hoping that a simple solution will fix an often complicated problem.

In the midst of dealing with all this upheaval around their child’s mental health needs, parents often find their marriage, financial health and ability to hold a job takes an enormous hit. While the data about children with mental health needs is sobering, the impact on their parents is equally appalling and very little attention is paid to it.  They face the steepest challenges of any group of parents, but get the least recognition and support.

This isn’t simply a result of stigma, though it certainly does play a part.    Parents of children with mental health needs have the highest divorce rate of any group of parents whose children have special needs.  A 2008 study reported that couples who have a child with ADHD are almost twice as likely to get divorced before their child is eight years old, compared to parents of kids without ADHD. In addition, among the two groups of couples studied who had divorced, the marriages with children diagnosed with ADHD were shorter than the marriages without children with ADHD. 

Other national surveys of children with special health care needs indicate that parents of children with mental health needs are more likely to lose their jobs or live in poverty. Up to 24 percent of families of children whose special needs had a major impact on their family reported that at least one parent had to stop working or cut work hours to care for their children.

Parents also report that their health insurance benefit is inadequate for their child’s mental health treatment and have to pay out of pocket for necessary services. PPAL’s 2010 report, Overcoming Barriers in Our Community, found that 32% of respondents said their child needed a treatment their insurance didn’t cover and 30% said that the copayment for therapy was difficult to afford.  In addition, almost 25% found it was difficult to pay for their child’s medications.

Many parents of “typical” children might find it overwhelming just to get up in the morning and face all this, let alone successfully navigate or manage it.  Parents of children with mental health needs ought to be seen as saints and survivors.  Our hats should be off to them.  Instead, they are often blamed and undervalued. 

While government and private foundations find money to invest in researching the causes of autism or childhood cancer (as they should) there is an assumption is that poor parenting choices, drug company conspiracies or shoddy diagnosis are some of the reasons for a child’s mental health needs. Parents of a child with a psychiatric diagnosis are more likely to be judged by others than parents of a child with developmental delays or chronic medical conditions.  They are also less likely to have the social supports and community connections that helps to support their family.

In spite of all this, parents whose children have mental health needs have created something amazing in this state and nationally.  There is strong family movement in children’s mental health led by those same parents who are trying to keep their marriages together, hold down jobs and be the best parent they know how to be.  It’s growing each day, one parent at a time.  Let’s give them the recognition they’ve earned.

Tags: , , , , , , , , , , , ,

Posted in Blog Posts | 6 Comments »