Tag Archives: mental illness

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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Unlock that door

May 22nd, 2017

My dad’s face got that look when all the locks clicked.  You know, that l-sure-didn’t-expect-this look.

We were there to see my then-12 year old son.  It was his 5th or 6th hospitalization so I had stopped noticing all the locks that had to be unlocked, then re-locked to let visitors in.  I was thinking about what to say, what I’d brought and had my fingers crossed that it would be a good visit.  When I saw my dad’s face, I knew I should have mentioned the locks.

It was the first time he’d visited an inpatient psychiatric unit.  I had gone each time my son was hospitalized, of course, and during the first two or three hospitalizations, my younger son had come along once or twice.  But now he was old enough to refuse and he dug in his heels. My mother had come before too, but this time she was under the weather and stayed home.  So, my dad volunteered.

In this state, there are only two ways that children get locked up.  Either they commit a crime or a doctor determines that they are a danger to themselves or someone else and need to be in an inpatient psychiatric setting.  Only those two settings are locked.

I got used to the routine of entering a psychiatric unit and leaving one.  Waiting for staff to deal with the locks, knowing they never let more than a few people inside at a time.  Once, when they were extra careful, I heard that a young teen had just run out of the unit when a large group was coming in for a visit.  She timed things right and made a run for it.  They were very careful after that.

It’s not easy for a child or teen to be admitted to an inpatient bed.  They have to meet the criteria of being a danger to themselves or a danger to someone else, your insurer has to agree and there has to be an available bed.  Young children, the same ages my son was during his first few hospitalizations, might hurt themselves (or try to) as well as act aggressively toward their parents or siblings.  Some teens, as they get older, may do more of one than the other.  The really terrifying part of it for a parent is that your child can have a nonstop focus on suicide or aggression that is so extreme or unrelenting that you feel you’ve tried everything and everything has failed.  You’ve failed.

It’s a big step to take a child’s liberty away.  They enter a structured, locked and contained setting in the hopes that treatment there will work.  Distractions are stripped away.  Your visits with your own child are limited.  You have to take it on faith that the treatment and setting are a good match for your child’s desperate needs.  Not all hospitals are the same, far from it.

Sometimes it’s the only way to keep a child safe.  Mothers have told me they’ve slept in front of their child’s bedroom door to make sure she doesn’t hurt herself during the night.  Fathers have told me they’ve kept their son in a separate part of the house, away from his siblings, till his aggression runs its course.  You can only do that for a short while or for a limited number of times.

But once a child or teen is in an inpatient bed, we are a lot more loosey goosey about the other end of their stay.  Some stays are short, maybe as short as three days.  Others are longer.  Pretty often, not a lot of attention is paid to discharge, to going home and back to school, until it’s staring you in the face. Those doors will unlock and your child will go home with you.

Sometimes children aren’t discharged until Monday even though they are ready to go home on Friday night or Saturday morning.  Some hospitals say they don’t discharge on the weekend while others say that if a child needs therapy, no one is open on Saturday or Sunday.  (Don’t they know it takes weeks – if you’re lucky – to get an appointment even if it’s urgent?) It really bothers me that we take that child’s liberty away for two more days, when they might be ready to be at home.  Lots of parents would also prefer discharge be on a non-work day and having two days before the pressure of school makes an impact can be a blessing.

Many kids are released without a decent plan.  They are released with a piece of paper, a prescription and few instructions.  Sometimes the prescription is for a medication that requires an insurance okay (also known as prior authorization), which is an additional obstacle.  Parents aren’t sure what to say to the school or what adequate aftercare should look like.  Pediatricians are often not kept in the loop and they are the medical professionals parents are used to relying on.  With a sketchy plan or none at all, you feel like you’re on your own.

There are memories that stay with you, good ones and awful ones.  Some are visual memories, like a beautiful beach on vacation or angry look from a teacher.  Some are scent memories like a turkey roasting at Thanksgiving or your mother’s perfume. They have the ability to take you back to a moment in your past.  The sound of the locks clicking shut on that hospital door is one of those for me.  When my dad gave me that we’re-not-in-Kansas-anymore look, I thought about how we throw our child’s safety, their liberty and our hopes and dreams for them all into the pot.  Then we make the best decision we can.

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Emergency rooms, security guards and silver linings

May 1st, 2016

silver liningAs Children’s Mental Health week begins, I find myself thinking about my journey into the mental health world.  Almost 17 years ago, my husband and I adopted triplet sons. They were 2 days old the first time we held them.  Their birth mother handed them to us on Mother’s Day.  Since that day, I have always proudly proclaimed, “You will never meet anyone who received a more incredible Mother’s Day present!”  I still believe this.  What I didn’t know then was what an adventure the coming years would be!

From birth, my sons have been high need.  They were 6 weeks premature and were delayed reaching their milestones.  They displayed signs of sensitivity and hyperactivity very early on and were all diagnosed with ADHD combined-type before the age of 3.  In preschool, we noticed that they were not typical learners.  They were all diagnosed with dyslexia prior to the start of first grade.  Since then, they have all been found to have dyscalculia, dysgraphia, delayed processing, short-term memory deficits and, two have Tourette Syndrome.  We began advocating for their educational needs very early on and continue to do so almost every day.

They were also followed by a behavioral pediatrician who prescribed various medications for their hyperactivity and focus.  These helped sometimes and other times, the medications just exacerbated their behavioral problems.  Children with learning disabilities often experience anxiety and depression and this was the case with 2 of my sons.   Tourette’s has also caused “rages.”  Throughout the years, I have sought help from mental health providers who, at best, were unable to help and, at worst, just stopped returning my calls, leaving me feeling frustrated and helpless.

Three years ago, as my sons were dealing with adolescence, things began to unravel and eventually “blew up.”  One of my sons went into a prolonged depression, refusing to go to school, rarely eating or talking.  I desperately tried to find some help for my son.  His behavioral pediatrician felt she couldn’t adequately support his rapidly escalating mental health needs any longer.  Finding  an outpatient psychiatrist became an insurmountable task.  Most providers did not accept our insurance and the few that did, did not have openings or had very long waiting lists.  My son continued to deteriorate and when I feared he might hurt himself, I ended up taking him to our local emergency room.  It was a nightmare—the first of many that we have endured since. I am an RN who has worked in hospitals providing direct patient care for 40 years so my sons’ ER visits are viewed through this lens.

My son was 14 years old at the time of this incident. He was depressed and withdrawn.  In the ER, he was required to remove his clothing, including a sweatshirt that he always wore for comfort. He was placed in a “psych room” which was stripped down to a stretcher and a TV which was covered with a mesh screen.  We had no way to turn it on.  There was a camera in the room which was monitored by the hospital security team.  His room was directly across from the bank of screens for the psych area.  Hospital security used this area to socialize with other employees, often being loud and making inappropriate comments.  We heard them making fun of other patients– one of whom was a very young child who had been removed from his home by DCF and they laughed as he painted himself with feces.  I witnessed security guards allowing a housekeeping employee to watch while they all talked about the patients.

When I told them we could hear them and asked them to lower their voices, I was told to return to the room.  When I was leaving the room to make a phone call, the head of security made an inappropriate joke to me about a patient, and, when I gave him a dirty look, he insulted me. When I couldn’t take it anymore, I sought out a nurse and asked her how to get in touch with the Patient Advocate.  Instead, she told the Head of Security I was going to complain.  He then proceeded to follow me around, making rude comments.  I did eventually meet with a nursing supervisor, who admitted that she had no control over security but promised to try to help.  We were moved out of that area but felt intimidated by the security guard who was now posted at my son’s door.

We spent three days in that ER room awaiting a placement for my son.  I still shudder when I recall that time.  Unfortunately, every time one of my sons has had a mental health crisis, he has been taken to that emergency room  and had similar experiences.  I always fear retribution by the security team. There have been many times that I have not called emergency services out of fear that they will call 911 and force my child to go to that ER. Usually it ends up being a very expensive ambulance ride followed by discharge shortly after.

Living in the Boston area, we are very lucky to have some excellent teaching hospitals.  On several occasions, I brought one of my sons to a well-known pediatric hospital but, honestly, our experience was not much better.  One time, after finding my son had destroyed his room and was in his closet and would not respond to me, I called his behavioral pediatrician.  She advised me to bring him to this pediatric hospital to be evaluated (after I refused to go to the local ER).  Instead of helping, I was asked over and over and over by multiple staff members why I asked my son, “Are you safe, are you going to hurt yourself?”  I kept saying that I was concerned for his safety, as was his doctor.  Their focus was entirely on me, not my son….I was confused and scared.  They kept asking me to leave the room and, even before I was out of hearing range, I could hear them asking him if I he was safe with me. At one point, the room had 4 staff and again, they asked me, “What would possess you to ask your son that?”  I responded, “The pediatrician told me to ask him, besides, I’m a nurse and we ask patients that question all the time.”   They all said, “Ahhhh, she’s a NURSE….”  Apparently, that was his diagnosis, “his mother is a nurse” since he was discharged shortly after.   I just wanted to get out of there since we were not going to get any help.  We have had other visits there that were similar.

Most recently, the second born triplet began experiencing a lot of issues as well.  He has also done the ambulance to the local ER scenario, followed by being put in the room across from the security screens…aka the staff’s comedy show.  Nothing has changed, nothing ever helps.  When I brought this son to an appointment at an adolescent clinic to deal with misuse of electronics, he became very agitated and was saying he was going to “hurt his brothers.”  The doctor warned him that he should not be making threats but he wouldn’t back down. (He was mad but he has never intentionally hurt anyone.) The doctor decided to section him and send him to the ER for further evaluation.  Instead of telling me this, they had me leave the exam room under another pretense. When I tried to leave the room I waited in, I was shocked and horrified to see my son being paraded out of the exam room with several security guards, several Boston police and EMTs and put on a stretcher then sent by ambulance to go across the street to the ER (cost= $850!!). His head was down and he looked totally humiliated and defeated as he was paraded in front of dozens of supposed professionals, all gathered around, pushing forward and craning their necks to see “the show.” None of them needed to be there nor should they have been.

In 40 years of nursing, I have never done such an unprofessional, demeaning thing to a patient and I work with adults–not immature, fragile adolescents in an adolescent clinic.  The ER staff was respectful.  I learned later that the doctor who my son was seeing had called ahead to explain the situation and that was why he had not been able to warn me.  Security, on the other hand was invasive– literally leaning into the room and joining in on conversations between my son and I.  Also, to his credit, the clinic doctor e-mailed to check in the next day and, after I told him what had happened with the clinic staff, he said he was planning a staff meeting to review the incident to try to prevent such behavior in the future.

I can’t possibly describe all the visits and interventions.  In general, I have found emergency rooms are NOT helpful but, when growing teens get out of control, I have no choice at times (with police comes the ambulance).  We have been lucky enough to have some very supportive in-home therapists but the turnover is frequent.  We have also had some positive interactions with emergency services though, as my boys have gotten bigger and more destructive, they usually will not come to our home.  I try to avoid calling them as on a couple of occasions they called in 911, forcing my son to go to the ER.

I wish I could say that things have stabilized but they haven’t.  As my sons race towards the age of 18, I worry what will happen when they are considered “adults.”  We are debating medical guardianship and other options.  I research and read and worry.

So, as Mother’s Day approaches, I think about the past 17 years and, yes, it has been a lot of work, and tears and worry but…..I have 3 sensitive, funny, loving wonderful boys who are growing into awesome young men.  I get through the bad times by looking for “silver linings” when things go wrong. This is my version of resilience.  The ill-fated visit to the adolescent clinic happened on a late afternoon. As we were driving into Boston, I was mumbling about the terrible traffic which was only going to be worse on the way home.  I was whining about all I had to do that evening and how long it would take to get home.  Driving home later that evening, after spending many hours in the emergency room, my son, who had been through quite an ordeal turned to me and said, “Hey Mom, I have a ‘silver lining’ for you.  We missed rush hour traffic!!”  I love my boys!

Our guest blogger has chosen to remain anonymous.  She is the mother of three teenage sons, loves music and hopes her story helps others.

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My experience with public school

March 20th, 2016

girl studyingThroughout my public school years I always struggled with teachers, school counselors, and just about everybody in administration. When I began school, I started having problems immediately. No one there believed that I had mental illnesses. I did get a 504 plan starting in the 3rd grade. It consisted of bathroom breaks or breaks in general without questions, but my teacher didn’t follow my accommodations at all. I had the same accommodations on my 504 plan each year and each year the school did not follow it. I was given a pass to go to guidance and the school nurse whenever I needed. Multiple times when I would go to the nurse, she would tell me I was faking and send me back to class.

One incident happened where I was having a severe panic attack.  I went to my guidance counselor because I needed someone immediately but she was no help. As I was walking in, she was ready to walk out. She saw I was in distress so she sat me down to talk – or so I thought. I sat down, then she said she didn’t have time to talk because she had lunch duty.  She handed me a piece of chocolate and left me in her office alone. I started really freaking out because I didn’t know what to do. I was not allowed to call my mom because the school didn’t want me to go home when I had a panic attack. I was scared and felt I couldn’t trust anyone. When she came back, she looked at me with a nasty look and asked me why I was still in her office. I couldn’t even talk because of how bad I was panicking.

I was diagnosed with depression right before I started junior high, along with the anxiety I already had. My teachers constantly picked on me for falling asleep in class even though it was my medication making me tired. I had one teacher yell at me and tell me I should go take my meds in front of my entire class. I was extremely embarrassed.

I was always a quiet kid but I started getting mouthy with my teachers because they treated me with no respect whatsoever. They would threaten to take things from me, send me to the office and, in some cases, they would give me detention or an in-school suspension. My teachers still didn’t follow my 504 plan.

My high school years were the worst of all. I tried a new school that eventually didn’t work out due to my mental illnesses. I went back to my old school. After years of fighting with the school, I finally got an Individualized Education Program (IEP). Even with an IEP, the school still did not do what they agreed to do for me. I stopped going because I was having a really hard time.

I got diagnosed with agoraphobia shortly after that. My psychiatrist filled out a home/hospital form, which is a doctor’s order that lets a student be educated at home. During this time, the school sent cops to my house, filed a CHINS on me and called the Department of Children and Families. After being out for two school years, I went back for a short time to see if they would help me get back on track. The only thing they did was put me in a “quiet” room which was really the printer/fax machine/microwave/coffee maker/student file room.  Teachers constantly were in and out to get stuff or do something and would always tried to converse with me while I would try to work.

Finally, after doing all I could do to get the school to help me and listen, I couldn’t take it anymore. I decided to leave public school altogether and get my GED. Being out of school relieved a lot of stress and anxiety from my life.

I wanted this blog to end with a happy ending, like most of them. But my story isn’t over yet.   I have big plans for my future and I won’t let anything hold me back.

G.G, a 16 year old youth, is our guest blogger.  G.G. enjoys music, the arts and has completed the intern program at Youth MOVE Massachusetts.

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But you don’t act like you’re [insert mental health diagnosis here]

November 29th, 2015

Girl 1I have bipolar disorder. After years of struggling to find an appropriate diagnosis, years of misleading, suggested and “not otherwise specified” attempts to pin down what was “wrong” with me, I finally feel satisfied with the diagnosis I’ve been given. This is, of course, after an odyssey of inpatient psychiatric hospitalizations and a couple of times at residential treatment centers, which spanned almost a decade of locked treatment in my 23 years of life. That doesn’t even include the time spent in therapy.

I have been out of psychiatric facilities for over two years now, after years of truly believing that my future was forever destined to either be called “crazy” and locked up, or take a path that would lead to my eventual, self-induced demise. I was absolutely convinced that I was an awful person who deserved that bad hand that I’d been given, and that I was better off dead than living as a burden to my friends and family.

The other day, I shared my new diagnosis with a close friend, and their response was one of complete surprise and misunderstanding. “But you don’t act like you’re bipolar,” they said. I blew it off as something they said out of a lack of knowledge or understanding about mental health. But then I realized that that’s exactly the problem. Too many people dismiss people with serious mental health needs as being too “normal” or their symptoms as not being “severe enough” to need treatment. When they most need the support they are apparently not to be taken seriously.

How exactly is someone with bipolar disorder, depression, schizophrenia, anxiety, PTSD, you name it, supposed to act? Because I believe that that’s part of the problem, the belief that people with mental health needs have noticeable traits that set them apart from the rest of society. That you can pick out the “crazy” people from the crowd and somehow “protect” yourself or your family from their “dangerous” influence, as the media would have us believe. And it’s this negative misconception that leads people who need treatment, often times for their own safety, to not seek it out, to be afraid of what the people they love might think.

Well, let me reveal something to you. Mental health struggles can happen to anyone, at any point in their lives. That’s right, I said anyone. So it could be your kid’s kindergarten teacher who’s bipolar but manages well enough with the right medications and her weekly therapy sessions. It could be the employee in the office who makes everyone else laugh because bringing people joy helps keep his depression in check. And it could be you, someday. The thing that all three of those examples have in common is that all those people would be categorized in the “normal” category. They don’t “look’ “sick”…but they are.

So I guess what I’m trying to say, is that if someone confides in you about their mental health status, support them. Don’t discount their experience or not validate them because you’re only seeing the good days. And, as a whole, we need to stop thinking (consciously or unconsciously) that mental health is this scary, dangerous thing that should be feared and will *hopefully* never happen to us. But believing that, and acting accordingly, reinforces the stigma that so many of us who receive treatment experience. And wants to contribute to that?

Our guest blogger is Dani Walsh.  Dani is a 23 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing


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