Tag Archives: Children’s Mental Health

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 »

3 thoughts about COVID-19 and parenting children with mental health needs

April 17th, 2020

When the first news reports told us that COVID-19 was on our shores and would be a lot worse than we all predicted, I had the strangest thought.  Maybe parents like me, who parent kids with mental health needs, have an acquired skill to help us handle this better than others.  Maybe.

The quarantine and stay-at-home edicts don’t have an end date and feel like they could go on forever.  We are not sure where our next roll of toilet paper is coming from.  We have to count on people who hold power and authority to do the smart thing and know they may not get it right.

But we are accustomed to ambiguity.  We live each day knowing that a diagnosis might change next week and the medication that works today could stop working at any time.  We are used to being promised something and then find out it’s not going to happen.  So we learn not to bet the farm on what people tell us, even the well intentioned ones. It’s not a matter of trust exactly.  Instead we have the experience over and over again of counting on people who hold power at school, in mental health programs or at insurance companies to do the smart thing for our children and then realize it’s not going to be delivered.

We hold two versions of the world in our heads at the same time – one where disaster is always waiting and one where we have a hope filled vision of the future.  So my first thought was that we have the needed skill set down already.  I spent years, from the time my son was small, never sure if it was going to be a good day, where I had a bit of control over how things would go or a bad day, where his mood was the rocket booster for a day spiraling out of control.  I developed the skill of living with uncertainty big time.

Maybe parents of children with mental health issues are better at this than other people, I thought.

That was my first thought.  Here is my second.

Our disrupted lives are even worse for parents raising children with mental health needs because they already are the therapist, the coach, the nurse, the structurer and the reporter.  Most parents are already maxed out.  There were so many days before the pandemic where we didn’t have one iota of energy, patience or motivation left by dinnertime.  Sometimes there was nothing left by lunch.  Because of how our lives have been upended by the virus, we now have several more roles.

Add in teacher, usually special education teacher, without any training to teach the curriculum, manage classroom behaviors (familiar with those) plus technology expert.  Sure there are plans we can follow and Facebook live or videos to consult.  But there are how-to-do-it videos showing you how to change a tire or cook a 5 course meal.  It doesn’t take you from still-figuring-this-out to I’m-up-to-speed very painlessly.

Now add in technology expert. Telehealth is the widely promoted new option and many parents like it.  But others struggle with the apps, technology and internet access issues.  When you don’t have an iota of focus left, it’s just another barrier that is now up to parents to figure out.

On top of all that, our kids are famous for not transitioning well at all and this came about so fast.  Some parents didn’t even have time to get the school medications from the school nurse.  Others are trying to figure out where the classroom is actually located in their homes (kitchen counter? living room couch?).  Some have children in programs and they can’t see them in person or have limited screen time with.  Others have children who were abruptly sent home from programs with a ridiculously small amount of transition planning.  Helping kids through a rough changeover from life as it used to be to life today is far easier if you have a clear picture of what things should look like.  Most parents are still figuring it out and tweaking it.

Other parents are anxiously watching their children ramp up or slowly shut down.  They are experts on their children and know the danger signs of an emerging crisis. Families are doing everything they can to hold off on a visit to the emergency department because no one wants their child or themselves exposed to this horrible virus.  They feel afraid to fail and determined to get through one more day and then another.  But the toll it exacts is pretty enormous.

Last, there is the isolation.  The sigma of parenting a child with mental health problems damages family closeness and friendships even in the best of times.  In times like these, even though we are overloading the cellular and internet networks, the isolation is increased tenfold.  Parents feel it deeply.  Many post questions or vent on closed Facebook groups or call in to virtual support and discussion groups.  They’ve become the new gathering place.

My third thought was it’s even worse for our children.

The greatest fear children have is that they will lose one of their parents.  News on television and online shows us pictures of front line workers pleading for protective gear and graphs of multiple deaths.  It bombards us all, even if we try to limit how much we watch or our children see.  I lived in Southern California when my kids were little, where the news reports the number of freeway deaths every day.  For most children living there, their greatest fear is that their mom or dad is going to die in a car accident. Most children don’t express and it and many cannot articulate it.  But it lies underneath their view of the world and stays there for a long time. This is much the same.  For kids who already cope with anxiety and depression, it can have an even greater impact.

I had these three thoughts and they are with me every day.  I think they probably will be for a long time.

Tags: , , , ,

Posted in Blog Posts | 2 Comments »

Why are there morphing diagnoses in children’s mental health?

February 13th, 2020

My son’s first diagnosis was dysthymia.  Not ADHD, which is a common first diagnosis nor the often-thrown-around “behavior disorder.” Dysthymia sounded serious and solemn.    I had to look it up to find out what it meant, which was milder, less severe depression.  It was kind of a dud diagnosis and it didn’t open any doors for help.

It soon vanished as others were piled on.  Some I understood immediately. School phobia was a no brainer for a child who was terrified to leave the house.  Depression, too, was an obvious one for a child who talked about dying and wept with despair.  But others seemed tacked on just to explain symptoms that appeared.  Oppositional defiant disorder for those times he would scream ‘no!’ and refuse to do anything.  Obsessive compulsive disorder for his need to talk nonstop about dinosaurs, video games or other things he loved and his insistence on a rigid bedtime ritual each night.  A year after I first heard “dysthymia” he had 7 diagnoses.  He was only 8 years old.

I call this the morphing diagnosisMorphing is a special effect in motion pictures and animation that changes one image or shape into another.  My son’s diagnoses did that – they morphed from one to another while he stayed the same underneath.

What’s wrong with him? people would ask me.  “Well….” I’d start, not having a clear and catchy phrase to use.  I’ve spoken with other parents and they’ve rattled off the list of their child’s diagnoses, only possible after taking a deep breath. That wasn’t me.  I knew them all.  But saying how it started with dysthymia and we are trying out mood disorder right now seemed like a conversation stopper.

I was polite and asked the psychiatrist, hospital, evaluator and therapist to explain this pig pile of diagnostic labels.  One said, “Children can’t tell us what’s going on inside so we diagnose based on what we observe. If a child’s behavior is complicated, we use more diagnoses.”  Another told me that certain diagnoses make others more likely, so they look for those that go together.  Like fair skin and sunburn, peanut butter and jelly, bad breath and cavities? I wondered.

When he was 10, someone added ADHD in.  He’d already had a sleep disorder thrown in.  I shook my head in disbelief and threw up my hands.  By then I was feeling discouraged.  Was it true that the more diagnoses my son had, the worse off he must be?  Some of his diagnoses were overlapping or seemed repetitive (how many mood disorders could he have?). And the more diagnoses, the harder he appeared to treat. And the easier to refuse a bed to, or a service or a school program.  He and his diagnoses didn’t match up to anything.

Turns out they were circling around the big league diagnoses.  Bipolar disorder.  Psychosis.  Schizoaffective disorder.  And no one wanted to apply them to a young child.  So the diagnoses kept getting heaped on with none of them being eliminated.

When he was 12, something wonderful happened.  His psychiatrist looked at his multiple, unhelpful diagnoses and suggested a new way of sorting through them. What if we used a kind of bucket system?  My son had attention problems, sleep issues, massive anxiety, moods that rocketed around and thoughts that were bizarre and got in his way.  So instead of sorting through the diagnoses, watching one blur into another, we began looking at distinct categories.

Each visit we’d talk about how the medications helped his attention or mood.  Or didn’t.  At school, we’d look at whether his rituals had decreased or not.  At home, I’d note if his thinking was pretty off the wall or more organized.  I’d watch to see if his weird food rituals or off kilter sleep cycles had improved.  I stopped labeling any of it.  The buckets stayed fixed.  They didn’t change.

When he was sixteen, he got one of the major diagnoses.  I found that the large diagnoses are often like a big tent and many of the smaller diagnoses belong under it.  My son’s anxiety and the rituals he used to control it went under that tent.  So did his erratic sleep patterns.  So did his complete inability to pay attention for blocks of time.

He didn’t get better from any of the many diagnoses that were slapped on him with each new therapist and each new hospitalization.  He wasn’t cured and suddenly got hit with a major new diagnosis.  He’d had that illness, though not the diagnosis, all along.  No one had wanted to attach it to a child.

Some families get lucky.  Their child’s diagnosis morphs into something smaller.  Or it morphs away.  But for many of us, we get acquainted with diagnosis #1, become expert about it and think, okay, I can deal with this.  Then diagnosis #2 and #3 get slapped on.  To help our child, we learn and become knowledgeable about each diagnosis. It’s great information to have if you are talking to your insurance company or trying to qualify for certain services.  But it’s a slippery thing.  Sooner or later it’s going to morph.

Tags: , ,

Posted in Blog Posts | 1 Comment »

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.

 

Tags: , , , ,

Posted in Blog Posts | 3 Comments »

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.

Tags: , , , ,

Posted in Blog Posts | 2 Comments »