Tag Archives: parenting

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.

 

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You can’t unsee, you can’t unhear and you can’t unparent

December 30th, 2019

“I treat all my children the same,” my friend said to me.  “There’s no difference.  I don’t have favorites and what goes for one, goes for all.”  I held my tongue, but inwardly I winced.  There is not a chance in hell I could do that, I thought.

I didn’t always think that way.  The myth that we treat each child the same way as the other ones has a firm hold on many of us.  We see ourselves as fair, dispassionate dispensers of goodies and discipline.  What’s more, we think that if we parent in an undifferentiated way, we have taught our children fairness, equality and some sort of justice.  It’s hard to let go of that idea.

And then you have a child like my first, the one with outsized mental health needs.  I had to parent him in a way I never imagined.  And when his brother came along, I just kept on doing things the same way.

For starters, my oldest son couldn’t soothe himself from day one.  Oh, he tried.  He sucked his thumb well into childhood.  He didn’t give up his teddy bear until almost middle school.  But that was for the small hurts.  If something sent him into a tailspin, including yelling or anger, he couldn’t get back to calmness by himself.  There would be a meltdown or a long, shuddering crying jag until he exhausted himself or I sat with him, often for a long time and talked him through it, guiding his mood and thoughts away from anger and pain.

When he was older, the meltdowns could lead to self-harm.  Taking a tough stance, yelling or even a firm voice often led to him bruising, scratching or cutting. It reduced the pain inside, he’d later explain. That sure put a stop to a bunch of tactics.  The point of setting a limit or giving a consequence is never to increase the odds of self-harm.

He was also impulsive and couldn’t apply what he’d learned in one situation to the next.  When we went to Target, I’d have to lay out the plan in advance:  we are buying this, you can have gum (or not) and then we are going home.  Things needed to be predictable, we couldn’t mix things up.    I could never ask, “What shirt/socks/sweatshirt should we buy?”  Having lots of choices kick started his anxiety.  Instead I’d say, “I like the red one and green one.  Which one do you like?”  And if that worked at Target, we’d have to begin all over again in the grocery store.

None of these things were true for his younger brother.  Sure, he would cry or have the occasional temper tantrum as a small child.  But they lasted a short time and they vanished as he grew older.  He was confident about trying new things.  Once, I remarked in wonder to a friend that he had no problem choosing a t-shirt.  She said, “That’s what’s supposed to happen.  That’s what regular kids do.”

But I approached parenting him using the lessons I had learned with his brother.  I didn’t know how to unparent.  I couldn’t unlearn the way I’d learned to parent already. I didn’t know how to wipe clean the experiences I’d had with his older brother. I usually gave him two choices when picking out shirts.  I was careful to set limits in a way that didn’t trigger a tantrum.  I over-explained.  I drew a map of how our excursions would go.   Maybe it didn’t hurt him, but he didn’t need it.

Like many parents, I drew on how I was raised, remembering how my own mother did things.  Problem was, my older son wasn’t like me, so that was a bust, though later I circled back to those strategies for son number two.  As a child, I picked up on the nuances and followed the rules without complaint (for the most part).  I didn’t need things spelled out and navigated childhood pretty well.  One parent in a support group I led was the same way.  Her daughter had changed in one year from an easy going, high achieving teen to one whose default setting was defiance.  She told this story to our group and said, “My mother used to say, ‘someday you’ll have a child just like you.’  I only wish I had!” I felt the same way.

A friend of mine used to say that we raise only children these days, no matter how many siblings are in a family. The way it used to be, she says, is that the Jones kids would all be in choir and the Smith kids would get swimming lessons.  It was a lot easier on parents who do the scheduling and shuttling.  Now, one child takes guitar lessons, another goes to art class and a third plays soccer.  She’s right, we encourage our children’s individual interests and passions. Maybe that’s what’s fair and equal.

Being a parent is a hard job.  Parenting a child with mental health needs is 100 times harder.  Each strategy we find that works, we hang on to.  Each routine that makes things a little easier, we incorporate.  Every unorthodox approach and each new way we phrase things is our new way of parenting.  Maybe we shouldn’t unlearn them.  We worked hard for them.

 

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When I call it sibling spillover, other parents nod their heads

October 9th, 2019

“That’s okay”, my 9-year old son said, “I can read the rest myself.”

Reading had been one of our sacred times.  His older brother, who had meltdowns several times a day, was not allowed to come in and disrupt bedtime reading. It was a hard and fast rule.  My 9-year old and I read books far beyond his reading level, as his interests ranged widely, but he was catching up.  Still, it was our special, untouched time together and we cherished it.

This night was a hard one.  My older son came down the hall, right up to his brother’s bedroom door, crying and raging.  He flung himself on the carpet, never crossing the threshold, but we could certainly hear him and feel his intensity.  He was still revving up and this meltdown would continue for a while.  So my younger son dismissed me, sadly but firmly.  He then finished the chapter by himself.  I hadn’t realized that he could.  He’d been pretending the book was too hard.

He told me the next night he didn’t need me to do anything but say goodnight.  “I won’t hear how the story ends,” I said.  “I’ll tell you,” he responded. We never read again at night together and I felt a pang each night for months.

This is the way it goes for the siblings of children with mental health needs.  Their parents are torn and there are days they get scraps of attention when they should get big swaths of it.  They learn how to meet their own needs, often before they are ready to.  Like my son who sent his melting-down brother and me away so he could have a quiet bedtime, they often choose what works over what they need or really want.

My younger son played soccer for a number of years.  There were home games and away games as well as practices during the week.  Although I dropped off and picked him up from practice, I attended nearly every game, a promise I made to myself.  Sometimes we would be in the car together or with teammates as we drove to away games and talk about anything except home life and his brother.  Other times, he would commandeer the radio and play whatever he liked, loudly. It was a kind of oasis in time, where we could pretend we were just another mom and son with no other worries.  He relished that time when he had his mom all to himself.

Parents share openly the impact of their child with mental health needs on their time, their finances and even their ability to work a full time job. We describe how our child’s needs are so outsized that it demands every scrap of time, attention and resources we have to try to meet those needs.  It also impacts marriages, relationships with relatives who don’t “get it” and sometimes longtime friendships.  But those things are about us, how we feel, adjust and cope.

The impact on the other child – or children – is something we often have little control over.  Our child with mental health needs may scream threats at their brothers and sisters, disrupt their lives and make them scared and angry.  We can feel powerless, guilty and saddened.  We don’t have easy remedies.

I first realized the deep impact on my younger son when he was only four.  His then-7-year old brother had wild rages where he overturned furniture (how could one small adrenalized boy do that, anyway?), threw whatever was near his hand and maintained this for up to three hours.  My little four-year-old learned to run to a special play area at the foot of his bed, shut and lock the door and pull out the toys he could only use during the be-safe-now times.  He did this several times a week, at least.  One day, a friend asked a question about his brother.  “My brother,” he told her, “is a very good boy who does very, very bad things.”  He also said he was afraid his brother would hurt his mom.

Therapist are quick to diagnose siblings with depression, anxiety or even, PTSD.  Those may all be accurate, but when I talk to other parents, I call it sibling spillover.  I‘ve never had to explain it.  Hundreds of parents have just nodded their heads and told me how their other children have been profoundly affected by the one with mental health needs. And by our inability to give the undivided attention and resources they often need.

We develop strategies, however, like going to soccer games without the other brother with mental health needs. We parent one way for one child, another way for the other.  We look for experiences where the sibling without needs can feel smart, brave, talented and whole.  We love unconditionally and extravagantly.  Mostly, it seems to work.

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Is hope a difference maker or something we give lip service to?

July 22nd, 2019

It was one more meeting where I described my young son’s extreme moods.  It shouldn’t stand out in my memory, but it does. It was a tedious meeting in a way, telling his story and mine one more time.  Yet, I was comfortable, too, painting a picture of his days, some wild and hyper-charged, others filled with pain and darkness.  This was a familiar task for me at meetings, at intakes and when someone new was providing care.  It was an emotional landscape I knew very well.

On the ride home, I thought about his moods, which were often two (or more) wild and crazy extremes.  I had a moment of clarity when I realized that part of my comfort was that our lives – his brother’s life and mine — had those same extremes.  We rocketed from periods of hope and expectancy to times of despair and darkness. Sometimes they mirrored my older son’s trajectory, but not always.  Describing my son’s swinging moods was the same as portraying our roller coaster home life.

I’ve thought a lot about hope and darkness, two emotional states we lived with over many years, so that it felt sometimes like they were additional family members.  Sometimes the jump from one to another was abrupt, like someone came and changed the paint on the walls from stormy gray to sunny yellow overnight.  Other times, it was like a dimmer switch that was slowly moved from low to bright light.  Some days my son would emerge from hours-long, pain-filled crying along with waves of outbursts and I’d see in his eyes that he was back.  He was lost and had re-emerged.  Those days I’d feel a flare of hope. My mood mirrored his.  Other times, my feelings of hope or darkness had less to do with him than my own feelings of passion or inadequacy, determination or exhaustion.

Hope and darkness were regular companions for me for a long while, just as they are for many parents raising children like my son.  We require ourselves to act calmly, firmly, knowledgeably or passionately around our volatile children and at meetings when we ask for help.  Sometimes we actually feel that way, though many times we fake it.  Inside, we are nurturing hope or battling dark thoughts.

Hope is a funny thing.  We talk about it a lot in the children’s mental health world and sometimes it’s even written into care plans. We don’t teach people how to nurture it or grow it, however.  We don’t recognize it and remark on it in others or ourselves very often.  We don’t reward it or know very much about strengthening it.  Often people believe it’s the child who needs hope, when their parent needs it just as much.

Hope is not reciting platitudes such as ‘everything will turn out for the best.’  It’s not little sayings or making wishes.   It’s something much more durable.   Chris Hedges, American journalist, writes, “Hope is not comfortable or easy. Hope requires personal risk. It is not about the right attitude. Hope is not about peace of mind. Hope is action. Hope is doing something.” For me, hope is made stronger by a sense of expectancy.  Not expectations, which regularly got blown up, but a feeling that something positive and satisfying might happen. And then doing something, even a small thing, to move life in that direction.

Parents are pragmatic people.  Our hope is anchored in real things, even if they only occur in small doses.  I pinned my hope on concrete things like the doctor saying his brain would change at age 14, letting him observe himself and be able to use those observations to participate in his own care.  I felt hope when I heard about the pipeline of medications that would be available in a few months or a year, when we’d exhausted all our options.  I was hopeful when I discovered programs or ideas to help my younger son, whose needs were just as important.

When those things actually happened my hope stayed steady for a while, chasing off the dark thoughts.  Sometimes I carried the embers of hope for all us, my sons and me.  I would see that spark of expectancy in my son’s eyes when he found something to look forward to and never want it to dim.   That was his hope joining with mine.

I got hope from other parents, too.  Parents ahead of me on their parenting journey, who had weathered emotional tsunamis and earthquakes. I heard how they got through it. They offered me ideas and strategies as well as laughter and understanding. They were parents who had figured out a way to grow hope.  Parents are practical people.  They don’t offer platitudes or empty promises.  They know the value of realistic hope.

Sometimes we are afraid to hope.  Sometimes our hopes are dashed.  But hope is a persistent thing if we let it be.  And we need it.

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Arrested and in shackles

June 10th, 2019

Every mom hopes that her children have wonderful opportunities in life.  That hope was always there, living in my heart, the same as most parents.  We all want our children to be happy.  We would like our children to succeed. We want them to graduate, we hope for them to get a job and do something they love to do. We don’t care much what it is as long as it is meaningful and they are following through. But those hopes and wants change over and over again when you have a child with trauma.

They changed for me with one phone call.  I got a call from the police in the middle of the night.  I jerked awake and heard, “Hello, Ms. Viano.  We have picked up your son. He was arrested and will be in court tomorrow morning.”  After I ask in shock, “What? Why? How? “ I realize that it’s 2 a.m. and I need to talk to someone but I have to wait.  The hours from 2 to 6 a.m. are really hard.  Going back to sleep is out of the question.

While I wait for 6 a.m. to come and I can call my mom to talk about it, I pace in the kitchen. Make coffee, get the tissues and cry. I wonder what happened, I don’t know any of the details because I was too shocked to ask. The not knowing makes it worse and my mind makes up stories, each worse than the last.  Then I remember, I can call and ask those questions.   I pick up my phone, call and get more information.  It leaves me with more questions and more turmoil.  I have some of the story but I am still unable to understand and make sense of this.   I keep checking the clock.

Finally, it’s 6 a.m. and I can call my mom. She answers immediately asking, “What is wrong? Are the kids okay?”  I start to tell her only to have my voice crack and my sadness overcome me. She listens with her full attention, like she often has in the 15 years I have raised my son. This time she says to me, “You always try your best as a parent. We all want him to get help and be okay.”   She pauses, then comes the next phrase, “I have no idea how to raise a kid like that.”  There lies the truth.

While I am comforted, I am alone again. But I am thankful that I have a family to talk to and understand.  There are many times that they don’t know what to do with my questions, my worries and most of my entire story.  But they listen and they care.  That’s a lot.

I arrive at the court promptly at 8 a.m. and go through the metal detectors.  My heart feels like it is in my shoes. Nothing feels good. Nothing feels right. Nothing feels helpful. This is what people who tell families to go to court to get help for their children need to understand:  it hurts, it’s frightening and it doesn’t make sense.

Finally, the courtroom is open.  The judge walks in and the moment is here. This is the time I have been dreading.  My son walks in behind a glass wall and with handcuffs and shackles on him. He is dirty, sad, and scared. I am a parent who can only look at her son and gaze into his eyes to show him I am there. My eyes well up and I begin to cry.  I see his lips moving telling me, “Sorry mom.  I am so sorry mom. I love you”. I believe him. He is sorry and he needs help. Jail no – help and treatment yes.

Moments later he is taken to jail to be held on a bail I cannot afford. I am alone, I am confused and I am struggling to be understood and listened to.  How can substance abuse, mental health and jail come together to support families and siblings? How can parents feel like they are not alone?

Time and time again parents have to search.  No one connects us – we have to find a community of parents on our own.  I found a wonderful organization, Justice 4 Families,  and wish I had found it sooner.  There are parents who have done this before you who can answer those questions. Parents need to know they are not alone.  There is a community waiting for them who can help them help their child, their adult family member and most of all, themselves. We all need support and someone to tell us, “I know what to do.”

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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