Mislabeled, mistreated, and misunderstood

What I’ve learned as a parent of a non-neurotypical child. Our journey through chaos Part 1

Labels: The good, the bad, and the horribly wrong

“Is that the bad one?”

“Oh yeah, that’s him.”

“He looks like trouble.”

“I wish he would just quit.”

“What about his parents.”

“Who knows, we never see them. Probably at home getting drunk.”

Two moms openly had this conversation as we watched our first graders play among the pumpkins. Bright, warm sunshine made the crisp fall air welcoming for our field trip, but suddenly the atmosphere turned dark, prickly, cruel.

Please don’t be my child. Please don’t be my child. Please don’t be my child.

Their approval was not important, but to hear those words spoken about a child made my insides queasy. Hesitantly I followed their steely gaze and was relieved to see it wasn’t my son, at least not for this conversation. Relief quickly followed by another wave of nausea.

That “bad” kid was a six-year-old little boy. Just last year he was a Kindergartner experiencing school for the first time. Now he was already “that” one.

Was he a foster child? Are mom and dad involved? Did he have a learning disability? Are the other children nice to him? My heart ached with the cruel unacceptance. Didn’t they realize this could have just as easily been their child?

Bad, trouble, that one. These are the kinds of labels many groups are fighting against arguing damage to self-esteem and increasing negative stigmas from others.

I would have to agree.

Some question, without labels how can we have a conversation about anything? Let’s not confuse diagnosis with labels.

Diagnosis: the identification of the nature of an illness or other problem by examination of the symptoms.

Label: a classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive.

Without a diagnosis we’re stuck in the purgatory of knowing something is wrong but lack the tools, information, and understanding to move forward. The something wrong are symptoms, our body’s way of calling out for help, our child’s way or responding when words fail them.

“He’s so bright, but he just isn’t trying hard enough. I’m concerned. He’s refusing to push beyond his comfort zone.” His first grade teacher told us at Parent-teacher conferences.

“What do you mean?” We asked in shocked unison. I’m concerned stuck echoing in my head.

“His imagination and ability to solve problems using unique strategies are incredible. He comes up with answers that no other student has in the history of my teaching career, but when it comes time to write a sentence he implodes.”

“He implodes?”

“He’ll maybe write a word or two but then he throws down his pencil and puts his head on the desk. Sometimes he cries. When I ask him what is wrong he refuses to answer me. It’s a complete shutdown.”

And there it was, his first label, not trying hard enough.

Crying, “throwing” his pencil down, his head on the desk, and refusing to answer his teacher were cries for help but they were misunderstood. Not just by his teacher, but by all of us.

So much guilt. I wish I could go back in time armed with the knowledge I have now. I could’ve saved my son so much hurt and helped him sooner. But the problem was I had no idea what was really going on. It would be several more years of seeking to understand his symptoms before I could do anything worthwhile for him.

The diagnosis provides the language (the what) to begin searching for both communal support (the how) and understanding (the why).

Searching for answers I read loads of articles and books about parenting. Some were helpful and some were just garbage. Advice from well meaning friends and family had the same average of effectiveness.

Undiagnosed purgatory is a lonely, challenging path wrought with uneducated and outspoken individuals creating insensitive hurdles.

Unsolicited advice was often inaccurate and hurtful. It’s impossible to know what it’s like unless you’ve lived through this. Trust me, I was on the other side looking in once and I was ignorant too.

“Do you have any other concerns you would like to speak with the doctor about today?” The nurse asked at my son’s well check while she plucked away at the keyboard updating his electronic file.

I hesitated, “Yes.”

She continued typing until she realized I was not elaborating. With a raised eyebrow she turned to look at me.

“He seems to be facing some challenges in the classroom.”

She nodded, turned back toward the computer, and began typing again.

Our pediatrician suggested a questionnaire (Vanderbilt Assessment Scales) used to screen for multiple items at once. We, the parents, would complete one copy and his teacher would answer the other. Once both were finished, the doctor could analyze the results and help us decide our next steps.

The next week we returned to his office. Glancing around the small exam room I grew nervous as our pediatrician looked through the assessments.

“It seems both you and his teacher agree on nearly all his behaviors. It’s likely he has ADHD.”

What is ADHD?

ADHD: (Attention Deficit Disorder) any of a range of behavioral disorders occurring primarily in children, including such symptoms as poor concentration, hyperactivity, and impulsivity.

“Attention Deficit“ didn’t seem accurate. My son could sit down and act out complex war scenes, D-day being one of his favorites, for hours at a time. It was only in school or during chores that his attention began to bounce wildly.

With research I learned this is common. People with ADHD certainly do not suffer from a lack of attention. They have gobs of attention spread over vast multitudes of areas all at once. ADHD is more of a focal deficit when faced with any uninteresting subject. However, they can hyper focus when passionate, hence the hours of D-day reenactments with his plastic army men.

Fascinating.

“Something about what is happening in early life leads them to have differences in their brains even by age 4,” said lead author Mark Mahone, Ph.D., in an interview with the New York Times. “There are structural differences in brain volumes, there are connections between brain regions reflected in white matter changes in people with ADHD, there are chemical changes in some of the major transmitter systems in the brain. When the brain is asked to do something, the brains of children with ADHD do the same task, but the brain is less efficient.”

Additude Magazine reports, “The rate of emotional development for children with ADHD is as much as 30% slower than it is for their children without the condition. For example, a 10-year-old with ADHD operates at the maturity level of about a 7-year-old; a 16-year-old beginning driver is using the decision making skills of an 11 or 12 year old.”

The Bad (labels)

“Labeled” kids can easily get the short end of the stick. Others begin to see “those kids” as their symptoms (impulsiveness, disorganization, problems prioritizing, poor time management skills, problems focusing on a task, trouble multitasking, excessive activity or restlessness, poor planning, low frustration tolerance, frequent mood swings, problems following through and completing tasks, hot temper, trouble coping with stress) instead of the multifaceted individuals they are, that we all are.

Authority figures have been quick to label my son a “trouble maker”, among other undesirable and inaccurate descriptions (lazy, refuses to pay attention, instigator, non-compliant, etc.). How many genuine 9-year-old trouble makers do you know?

Zero.

You know zero children who want to be in trouble.

Children want to succeed and please. They crave love, attention, and acceptance like all other humans. This inner drive is what compels them to keep standing after repeatedly falling when learning to walk.

If a child is intentionally getting into trouble perhaps negative attention is the only type of attention they receive. It could also be that to them being the “bad” kid is better than being the “dumb” one.

Labels given by others

Instead of encouraging, finding solutions to barriers, and seeking to understand, often we throw out labels like “lazy”, “stubborn”, “defiant”, “difficult”, “hyper”, etc. Most people avoid challenging situations. As a result, these “difficult” labeled children are avoided and pushed to the bottom of the priority list. Children recognize this shift. They are astute observers noticing the difference in how their peers are treated versus themselves.

Sometimes these labels can extend outside the school and childcare settings affecting friendships as well as family relationships. Parents hear talk of Johnny being a “trouble maker” and suddenly Kyle can no longer come over to play. Society creates its own self-fulfilling prophecy.

By eliminating connections to the struggling child, we are creating a person with pain and limiting their resources to find healing. How many times have we heard about the “lone wolf” violent crime offender or the child with no friends who takes their own life?

Obviously, we must protect our own children and sometimes that means removing them from dangerous people, but in elementary school it’s unlikely your child is hanging out with a “bad influence”.

Of special needs students who report bullying, the majority of those who are victimized are students diagnosed with mild Autism Spectrum Disorder and students with ADHD. These children are just different enough to be noticed but not so visually disabled that they are shielded from societal rules. Where “retarded” has become frowned upon many people tout they have ADHD/ADD when distracted or OCD because they prefer a tidy environment.

Instead of excluding these children we should be looking beyond the surface. Undesirable behavior is an indicator. What is going on? Do mom and dad need support or education at home? Does the child have peer support at school? How can we help?

When we respond to unwanted behavior critically, withhold care, support, positive attention, recognition, understanding and/or encouragement, children (and people of all ages) feel more than disapproved of. They feel rejected and abandoned.

Psychology Today warns if efforts at compliance seem impossible, children may eventually renounce their efforts at people-pleasing and end up either seriously depressed and/or angry, even defiant.

Resources are few, expensive, and difficult to obtain. (Read Time and Money: Why more kids don’t get the help they need ) Attitude Magazine reports 40% of youth with diagnosable (but not necessarily diagnosed) ADHD symptoms don’t get treatment. These parents and children are already exhausted from long school and work days, the endless calls/emails about behavior/grades, and all the responsibilities of life outside of this diagnosis.

The US National Library of Medicine National Institutes of Health states 40% of children who have ADHD have at least one parent who also has ADHD. If the child is struggling and the situation is further compounded by a parent with the same challenges, outside resources and support are critical for success. Resources for this family should NOT include pamphlets, books, or other written materials. Podcasts, audiobooks, immersive readers, or other auditory resources are helpful.

Parents of a child with ADHD are three times more likely to separate or divorce than are parents of children without ADHD is also reported by the US National Library of Medicine National Institutes of Health states. Any disability is an incredible stress to family life. We must consider this when making plans to help and adapt strategies to incorporate easily at home. There is no more important relationship in a child’s life than that of their family. Divorce would be one more monumental hurdle for a struggling child.

Labels we give ourselves

Labels can come from others, but no one can be more critical than we are to ourselves.

What happens when you try your best but no matter what, over and over again you fall short of your goal? You become discouraged and probably feel like a failure. Would you keep trying?

Athletically inclined I am not. Throughout junior high school I tried various sports. After spending most of the season keeping the bench warm broken only by enduring intermittent periods of embarrassing myself while simultaneously letting the team down, I stopped trying out for any of the teams. I learned I wasn’t good at sports. I stopped pursuing them.

Reasonable, right? So why is it that we expect our children to keep pushing ahead through a 13-year long game requiring skills they may likely never develop? Why do we demand more of our children than we ourselves are capable of?

I am bad. I’m dumb. There’s something wrong with me. I’m worthless. I’m not enough. I’m unlovable. I’m weak. I’m less.

Everyone, even the neurotypical (those of us not struggling with brain differences such as, ADHD, dyslexia, anxiety, etc.), struggle with this same self-talk. It’s a result of feeling shame.

Shame: (defined by Dr. Brene Brown) intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging — something we’ve experienced, done, or failed to do makes us unworthy of connection.

“I don’t believe shame is helpful or productive. In fact, I think shame is much more likely to be the source of destructive, hurtful behavior than the solution or cure. I think the fear of disconnection can make us dangerous.” ~Dr.Brene Brown

Brain differences are a matter of genetics and environment. We are no more in control of our how our brains develop in the womb than the color of our eyes. Feeling shame for brain differences is not reasonable or rational. We are who we are. Our best course of action is to accept and surround ourselves with those who love us not despite our flaws but because of them.

ADHD Statistics by Additute Magazine shows 30 to 60 percent of patients diagnosed with ADHD in childhood continue to be affected into adulthood. The rest have adapted coping mechanisms, entered fields where their brain differences are not as noticeable, or their brains have grown out of it. But if we don’t help correct low self-esteem now, our children will never believe they are capable of anything at any time in their lives.

Fight labels with embarrassing stories

We must fight cruel, unjust, inaccurate labels immediately by rationalizing them in our own minds and educating others. Common conversations in our house revolve around sharing embarrassing or poor choices we, the parents, made as children and teenagers to show our sons they are not alone.

Mistakes are a necessary part of learning throughout life and growing up. All humans, including their super hero, shiny parents have made some whopper-sized bad calls in the past, but we’ve learned from them and moved on. These errors do not make us dumb or bad, but rather normal.

“Do you think mommy is dumb?

“No.”

“Bad?”

Shakes head with wide eyes.

“If we have both made mistakes, why wouldn’t we both be dumb?

Shrugs shoulders.

“Why aren’t we both bad?”

This is when the lightbulb usually triggers or when the tears begin to flow because suddenly, we’re facing shame, insecurity, and/or fear head on.

Low self-esteem comes with the territory of being told “no”, “stop”, and “don’t” all the time. “Don’t run into the street”, “Stop eating candy”, “No, you can’t take your realistic gun (or any for that matter) into a public space” is necessary to help with impulse control but exhausting for both parents and child. Explaining why helps my son understand. It doesn’t dissuade his impulsivity, but it opens a conversation and over time these connections help him know what is and is not acceptable.

Keeping him alive is priority number one, but just as important is his mental health. If he’s alive but has no desire to be then I have already lost the battle and so has he.

Fight labels with self-advocacy

Stand up for yourself!

False dichotomies, poor self-image, and inaccurate labels create children (and later adults) who accept whatever punishment is dealt, deserved or not. My son has found himself in situations where he was unfairly accused.

“Why did you throw the banana peel on her?”

“I didn’t. I was stretching and the banana fell out of my hands.”

“No, the banana peel didn’t just fall out of your hand onto her. She was sitting two people away from you. She saw you throw it.”

Silence. Eyes down. No one believes me, what’s the point in trying? I hate school.

Was he wrong? Did he lie? Maybe.

Could the other child have been wrong? Could he have been telling the truth? Maybe.

Could the adult carrying out the conversation/discipline have a tilted perception based on inaccurate labels? Maybe.

Was his side considered? I don’t think so. He had never thrown food before. His version of the story was plausible. With a jury of his peers he could have cast doubt.

“People hear one side of the story and then make their minds up. I’ve been telling my side, but no one believes me because I’m a bad kid.”

I’m bad. I deserve to be punished.

Already with a strong affinity to confrontation, his self-esteem took another blow leaving him to feel as though he deserved the injustice.

Heartbreaking.

“Between 25 and 40 percent of prison inmates have ADHD, and most are undiagnosed and untreated. This is an alarming overrepresentation considering that it’s estimated that only 4 to 8 percent of the general population has ADHD. What is most concerning is that often criminal activity and incarceration could have been prevented if ADHD symptoms were properly identified and treated.” According to the Attention Deficit Disorder Association, ADDA.

Ask for help

Symptoms of ADHD include low tolerance for frustration, poor self-image, and emotional dysregulation. Together this creates the perfect storm to impede courage, confidence, persistence, resilience, the ability to take a risk, finding their voice, and giving voice to their ideas.

When you think you’re garbage how can you face the vulnerability of asking for help? It’s nearly impossible. I’ve been working with my own son for the past 8 years trying to help him help himself. Year after school year the teachers tell me he will shut down before reaching out.

I know.

A thousand times I’ve talked to him about asking for help. A thousand times he’s agreed to try next time. We’ve talked about warning signs signaling he’s overwhelmed and options to help prevent a complete shutdown. He’s identified situations where he finds himself frustrated and strategies to work through that. We’ve role played and rehearsed.

Then it happened. He asked for help.

“You don’t need help with this,” He was told.

Yes, this really happened. I instructed him to respond, “You told me to ask for help. I’m asking for help.” Further I told him if he was not helped to let me know.

You can’t have it both ways. Either you want him to ask for help when he needs it or you don’t, but you certainly don’t get to deny him help when he summons the courage and self-awareness to ask.

A few years later he also had a teacher who recognized his triggers and proactively reached out to him before an implosion. This helped him recognize the triggers in the moment. All the research I’ve found is conclusive; you must address the behavior as it happens for effective mitigation.

“I need help.”

“That makes me feel like I have a purpose because I am here to help you.”

Could she have responded any more perfect to his request? Wow. This simple exchange made a big impact on my son. When he shared this story pure joy washed over me. We high-fived and I was sure to make a big deal out of this small step for self-advocacy in hopes it would continue.

In Your Own Words

“There’s a paper you need to sign in my book bag.”

“For what?”

“It’s from the principal.”

“What happened?”

(Insert story here with no clear reason for discipline.)

Often times my son doesn’t know why he’s been disciplined. I must reach out to the school for an explanation then discuss it with him. It’s important to have my son explain, in his own words, what happened and why he was disciplined. This is the only way I can ensure he understands.

If you don’t understand what’s happened how can you advocate for yourself?

You can’t.

Not effectively.

Here again he was accepting a punishment, assuming he deserved it.

If the goal of a punishment is to discourage repeat behavior it is imperative the child knows what behavior is undesired.

Advocate for your child

Sometimes it feels like you’re fighting an uphill battle. More accurately, that feeling will become the normal everyday status of your lives. Remember when you’re depleted, frustrated, and want to throw in the towel, your child puts his backpack on and walks into the battle every single day.

You’re in this together. You’re his protector. No one loves him and cares as much as you do. If you fail, you will both fail.

Arm yourself with knowledge. Keep searching for more information to increase your understanding. Ask questions, read books, listen to podcasts, find a local parent support group or friend who has gone through similar experiences.

Resources abound on the internet, in the library, and through your network. Reach out.

Seek to understand the position of your opponent. You will go up against you child’s behavior, their learning struggles, the school, doctors, etc. The single most important thing is to understand what their stance is and why they have chosen that direction/belief. You don’t have to agree or even come to a resolution, but if you understand them you can move forward on your own anticipating and preparing for the next hurdle.

Most important is to remember is that no one knows your child like you do. Trust your gut. If you feel that something is not right, investigate!

The people who are “supposed” to know best may not for a multitude of reasons. Inaccurate information is in no short supply. Statistics can be skewed, reports biased, and false beliefs built upon them.

It’s going to be hard. You will upset people. But all of that is irrelevant. We are talking about the education of your child, the building blocks to his understanding of and operation within the world. There has never been and will never be a more important reason to jump out of your comfort zone.

To be continued in part 2…

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