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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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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.

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Falling through the cracks

March 10th, 2020
 

In my early teen years, I was considered acute, as I exhibited sudden onset symptoms of anxiety and depression with suicidal ideation. I was in and out of the hospital due to the fact that I was unable to ‘contract for safety’ – as they used to say.  Although those were some of the toughest years of my life, I had a vast team to give me a leg up when I was at my lowest- therapy, youth groups, a DMH support worker, a team at my therapeutic high school and my parents. I was very lucky to have a complete arsenal of support and resources to keep me from falling through the cracks.

I can’t say that I’m completely without support these days, either. I still see the same therapist I started with 17 years ago and I have friends and family who know that I struggle from time to time and graciously still love me when I become symptomatic. For the most part, I can say that the good days outweigh the bad, and when they’re good, they’re really good. I can function without using up all of my spoons, and I genuinely enjoy life. That being said, when the days are bad, they’re the worst. The bottom line is, I live with depression and anxiety and even though I can get through my day, I’m not doing it without a substantial amount of stress and worry.

Now, when I’m at my lowest, I don’t typically utilize my natural supports. I never want to feel like I’m a burden to others, but I know that I usually need to reach out for help. Once I’ve realized that I’ve reached the bottom of my pit of despair, I know that it’s time to claw my way out again, and I try to utilize resources. Unfortunately, they seem to be few and far between for people like me. Whenever I make a real attempt to better myself, I always end up feeling spurned and unheard. I’m just going to come out and say it; there aren’t enough resources for folks who present with ‘high functioning’ mental illness. I use the term ‘high functioning’ loosely, of course, as no one’s mental health journey is linear.

When I go out of my way to access services for myself, I’ve been told that I present as a bright, well adjusted adult who has her life together, which gets me nowhere. Because I can speak ‘eloquently’ and have the ability to advocate for myself, I’m often turned down for support. A few years ago, I was having an incredibly hard time finding a job due to high levels of anxiety. I made an appointment with an agency that helps folks with disabilities gain employment. They refused to appoint me a job coach, and instead offered to send me to school- they didn’t believe I was “mentally ill” or “disabled” enough. This has happened every time I’ve looked to any agency for help.

This is happening to a lot of young adults who live with high functioning mental health needs. We’re being shifted aside because our symptoms aren’t severe enough. We’re not being made a priority, and we’re not getting what we need to fully succeed. In the long term, that sets us up to fail. When we’re not getting the support we need, our ‘milder’ symptoms slowly get worse, and are significantly less functional. Only then do we qualify for the services that we were asking for in the first place. We have to take two giant steps back in order to take one step forward.

I want to succeed. At work. At home. At life. I know I can. I’ve come a long way from the young girl who was told she’d spend the rest of her days locked in a psychiatric hospital. That doesn’t mean that I don’t need help for my mental health needs. If anything, I need accessibility in order to reinforce my stability. I don’t think that’s too much to ask for.

Chandra Watts is our guest blogger. She is our Youth Development Specialist and draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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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.

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Suicide as a Human Right: What We Can Do to Support Folks Who Consider Suicide

January 20th, 2020

We live in a world that is inherently traumatizing. There is no life on Earth in which trauma does not exist within. There are people murdered everyday, there are people dying that have no food, fires spreading and killing entire towns of people and wildlife. In a world in which things like this happen multiple times a day, it is impossible for me to blame people who want to kill themselves.

When I say I cannot blame anyone for having the urge to die, or for choosing suicide over living, I am not saying it doesn’t break my heart. I so heavily relate to the feeling that not being alive would be an upgrade from living on this planet.  What I am saying is that suicide is, and should be recognized across the board as, a human right. No one chooses to be brought into this world. Who is to say that we don’t maintain the right to live, or die, on our own terms?

My issue with most “suicide prevention” organizations is that suicide always being an option is not openly spread to folks. What is pushed instead the statement “You don’t want to die, you just want to escape your pain,” which completely negates the fact that for a lot of folks, life is pain. There are many folks who actually want to die, and telling them they don’t simply invalidates their experiences and shuts them off to discussing how they really feel.

What the organizations who push the message of preventing suicide should be saying is something to the tone of “Suicide is always an option, and we should not blame or shame folks who choose to die on their own terms. There is something very powerful, however, about knowing the option is always there, but choosing to live despite.”

No one wants to feel like they cannot escape. A statement I also disagree with spreading is “Everything gets better. Give it time.” That is a dangerous assumption, for unfortunately, lives can and do get worse for some folks. Sometimes escaping abuse, neglect, or your own demons just simply doesn’t happen, and it is unfair to tell people that they don’t have the power and the option to leave.

I’ve lost two of my best friends to suicide. Both under the age of 22. And as much as it hurts me that they are gone, and I miss them every day, I cannot get behind making people stay alive for the comfort of others around them. People say “you have so many people who love you” but when you grow up in environments in which it is ingrained in you that you shouldn’t love yourself, it makes life very difficult. I tell people often I want to stop living for others and start living for myself, but as someone who has endured lifelong trauma and degradation, it is still such a challenge to even like myself.

I’ve been fighting hard to love myself, and to put myself first. I know so many other people who are too. Since we live in a society in which, the vast, vast majority of folks have been taught that they are not good enough, through actions and through words, it is hard sometimes to believe anyone can love themselves.

Trauma is a human trait in which all of us have a piece (or 5) of. Instead of shaming folks for leaving, a better idea, a healthier idea, is to acknowledge trauma as a uniting force, and well as a systematic failure within all systems that need to be broken down and rebuilt.

 

Maxxwell LaBrie (pronouns: they/them/theirs) is a young adult whose passion for peer advocacy and youth voice fuels their dedication to writing. They are a psychiatric survivor and a certified peer specialist who thrives to support young adults in all avenues and through any struggle they face. They also serve on the Youth MOVE National Board of Directors.

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