RaisingJordan

Just a Mother Sharing How Autism & Mental Illness has Imapcted our Family


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The Medication Conundrum

“That is where we stand as a nation today. Twenty years ago, our society began regularly prescribing psychiatric drugs to children and adolescents, and now one out of every fifteen Americans enters adulthood with a “serious mental illness.” That is proof of the most tragic sort that our drug-based paradigm of care is doing a great deal more harm than good. The medicating of children and youth became commonplace only a short time ago, and already it has put millions onto a path of lifelong illness. (246)” 
~Robert Whitaker
Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mentalillness in America

drugs

 

Are psychiatric medications doing more harm than good?

When my son was just six years old he began having severe meltdowns which would last over five hours. These meltdowns could be caused by something as simple as not being able to eat a doughnut when he wanted to and no matter how you logically tried to break it down for him, he wasn’t having any of t.

We now know that my son has a severe receptive/expressive language processing disorder that went undiagnosed until just last year. The catalyst for the meltdowns was more than likely his inability to cognitively process what was being communicated to him and his frustrations in regards to that.

I feel it’s why school was and is a source of constant aggravation for him as well, because he’s unable to process the information the way a typical student is. That inability leads to feelings of embarrassment. Feeling as though he’s not as bright as other students, and he adapted by having meltdowns so he would no longer be forced to be in an environment that caused him severe anxiety.

When the meltdowns began we were naive, we looked to professionals for answers, we looked to the school for answers, and we believed and trusted in the advice we were given in regards to treatment.

The first medication my son was prescribed was Concerta. His family physician felt it would help in resolving the severe meltdowns. At first I was hesitant, because I didn’t believe in medicating children. As a young girl I had friends who had been put on medications like Ritalin and I saw how it had changed their personalities, and not for the better. I didn’t want to do that to my own child.

I felt backed into a corner when my child had to be taken to the E.R more than once because we couldn’t manage to help him calm down, so I relented and tried the Concerta. Not thirty minutes after taking the medication, my son became lethargic, vomited, complained of chest pains and nausea. Forty minutes after taking the medication he was being rushed to the E.R and then transferred to The Children’s Hospital where he remained for the next two days.

I was a complete wreck and felt responsible for having given him the medication. I wish I could say that was the end of our bad luck where medications were concerned, but it was just the first in a long line of negative or adverse reactions to medication.

The next medication was Risperdal. This medication seemed like a miracle drug, at first. When my son continued to have the meltdowns at school and at home his doctor prescribed the Risperdal and literally the next day the meltdowns stopped. I was relived but not for long.

Risperdal came with its own negative side effects. First, it made my son eat non-stop and then gain massive weight in his face and waist area. If that wasn’t bad enough, about six months into the medication he began growing breasts.

What the doctors forgot to mention when they prescribed the medication was that Risperdal causes the prolactin levels to increase and can cause lactation and breast growth in boys and men. It was during the Risperdal era that he began to talk about seeing shadows and colors.

Once my son began developing breasts, his psychiatrist switched his medication to Abilify. At first, we didn’t see any significant changes or adverse reactions, but as his doctor slowly raised his dosage to a therapeutic level we started noticing more aggression and then outright violent behavior. The meltdowns were back, albeit not as severe or as lengthy, but still, they had made a comeback.

He stayed on the Abilfy for about a year before his psychiatrist decided to switch him to Seroquel seeing how they couldn’t raise the Abilfy past 5mg without my son becoming overly agitated and violent.

Seoquel turned out to be the second worst medication doctors had ever prescribed for my son. It was an absolute nightmare of epic proportion. Seoquel caused him to perpetuate extreme violent behavior that was so out of control at just eight years old that he began threatening me with knives, punching me, kicking me, and destroying our home. It was non-stop every single day.

I communicated to his psychiatrist at the time that it was the medication that escalated his level of aggression and violence and she kept telling me that “We just needed to increase the dose so that his body would adjust and the behaviors would stop.” What a load of crap that was. The higher the dosage the worse the behavior was until finally, I insisted he be taken off the medication and put back on Abilify, the lesser of the two evils.

It was about this time that my son was diagnosed with schizophrenia and we moved to Colorado. There, his new doctor took him off Abilify and prescribed Prozac and Depakote. She was questioning the diagnosis of schizophrenia and wanted to address the anxiety piece of his diagnosis.

The Prozac seemed to work much as the Risperdal had in the first few months and we saw amazing changes for the better. I felt more hopeful than I had in years. In fact, we saw positive pieces of his personality emerge for the first time in ages. He was such a pleasure to be around and was doing an incredible job at school and seemed to be feeling better about himself. Unfortunately, this honeymoon effect was to be short lived and after a few weeks he became manic and had to be hospitalized.

In the hospital, they weaned him off all medications and took him to baseline. He seemed to do well off medication for some time and I felt that I wanted to leave him off all medications, but my son said he felt angry all the time and was having difficulty functioning. We spoke to his doctor and they put him back on the Depakote as well as Risperdal. His doctor felt that since he was older, the Risperdal may have a different effect and be beneficial in stabilizing his mood.

I agreed to try it because he had been in the hospital three times in three months, the police had been to our home at least five times, and once he tried grabbing the steering wheel while I was driving and tried to maneuver my vehicle into oncoming traffic. I admittedly was beyond desperate and honestly willing to try anything to bring some semblance of peace into our lives, even if it was just for a week or two.

When we arrived at NIMH, my son was on the Risperdal and the Depakote. He was again brought down to baseline and was observed without medication for a few weeks. When we left NIMH they prescribed Prozac, again, even though I had thoroughly explained his last reaction to this medication.

The doctors felt that maybe this time would be different and they felt they needed to address the severe anxiety. They felt that if they could address the anxiety, everything else would fall in place. And it did, for a while, that is until he began suffering from medication induced psychosis.

Since then, doctors have tried Zoloft, Lithium. Larazepam , Depakote & Rispredal, (yes, again), and every medication caused him to become more violent or tempered the violence but caused him to have some form of thought disorder or psychosis.

Currently, my son is on the lithium and tomorrow we meet with doctors to inform him that the medication has caused insomnia and subtle thought disorder. The lithium was the last effort in a long line of ineffective medications that have caused more harm to my son, then in relieving him of the symptoms in which he began medication for in the first place.

Recently I read a book entitled “Anatomy of an Epidemic, Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America.” In the book the author, Robert Whitaker, states, “With psychiatric medications, you solve one problem for a period of time, but the next thing you know you end up with two problems. The treatment turns a period of crisis into a chronic mental illness.”

I now have to question whether or not the medications have been the root cause of the continued mental health crisis my child has been experiencing.  What if I had just waited it out for a bit longer? Would the initial behaviors ceased to exist with extensive therapy and support?

My son has been in extensive therapy since he was six along with the medication, but has the medication prevented the therapies from being effective? Whitaker writes in his book that, “The off-drug patients also suffered less from depression, blunted emotions, and retarded movements. Indeed, they told Carpenter and McGlashan that they had found it “gratifying and informative” to have gone through their psychotic episodes without having their feelings numbed by the drugs. Medicated patients didn’t have that same learning experience, and as a result Carpenter and McGlashan concluded, over the long term they “are less able to cope with subsequent life stresses.”

If we currently lived in a State that allowed us to hospitalize our child during a medication taper, we would have him taken back to baseline and work with therapists to help him adjust and function to everyday life without meds. For at least the next six months, we do not reside in such a State and bringing him to baseline in our home would be just plain hazardous to our safety as well as his.

My son needs to be in a safe environment with trained professionals who can manage the violence and aggression he’s prone to having while tapering off powerful psychiatric medications. We are in no way capable of handling those types of reactions from medication withdraw in our home. Inevitably he would meltdown, have a violent outbursts and we’d have to call 911 for help in transporting him to the E.R. Those are risks I’m just not willing to take right now.

So for now we’re stuck, trapped in a cycle of medicating my child with drugs that seem to be causing significant harm and I don’t know what to do about that.

It was suggested to me today that I have my son genetically tested. Apparently, a test can analyze the genes that may affect a person’s response to anti-psychotics and antidepressants. Insurance companies won’t pay for the testing currently, but it may be worth the out of pocket expense if we can determine an appropriate medication that will help stabilize my son’s mood without harming him in any way. I have a meeting next week to discuss it, so we’ll see.

Until then, we just have to take things one day at a time and hope for the best until we can sort this all out. It’s cliche I know, but for now that cliche is the mantra of our life.

“…and she no longer is having her emotional responses to…stress numbed by medication. “I’ve been off the drugs for two years, and sometimes I find it very, very difficult to deal with my emotions. I tend to have these rages of anger. Did the drugs bring such a cloud over my mind, make me so comatose, that I never gained skills on how to deal with my emotions? Now I’m finding myself getting angrier than ever and getting happier than ever too. The circle with my emotions is getting wider. And yes, it’s easy to deal with when you’re happy, but how do you deal with it when you’re mad? I’m working on not getting overly defensive, and trying to take things in stride.”
Robert Whitaker,


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The Trouble with Psychiatry

“The history of psychiatry and its treatments can be a contentious issue in our society, so much so that when you write about it, as I did in an earlier book, Mad in America, people regularly ask about how you became interested in the subject. The assumption is that you must have a personal reason for being curious about this topic, as otherwise you would want to stay away from what can be such a political minefield. In addition, the person asking the question is often trying to determine if you have any personal bias that colors your writing.” 
 Robert Whitaker

bad  doctors

This is an updated version of a previous post.

Have you ever asked yourself “How do I know that the doctor or therapist I have trusted my well-being to, or my child’s well-being, is giving me an accurate and correct diagnosis?”  That is a question I asked myself often during the last eight years of rotating diagnoses that we were given in regards to my son.

I found it to be infuriating that my child was consistently and repeatedly misdiagnosed with an array of extremely challenging and life altering diagnoses, but I also found it deeply alarming.

 How is it possible that so many experts in their field got it so unequivocally wrong?  How can one, without concrete evidence over an extended period of time diagnosis a ten year old with schizophrenia?  For me personally, I feel that it was not only inappropriate that this occurred, but highly irresponsible as well.

The Children’s Health Council in Palo Alto, Ca. diagnosed my son after spending a few hours a day with him over a period of a week.  They took in past history from our family, schools, and former therapists. In evaluating him, they had him tested by a various number of specialists on their team. As a parent who is not trained in the field of psychiatry, I trusted that these were professionals who knew what they were doing and qualified to make a correct diagnoses.  When they returned with a diagnosis of schizophrenia, my heart broke and I grieved for the child who would never be.

The tragedy here is that the doctors and therapists made this assessment without understanding the context in which my son’s symptoms were materializing.  If they had spent significant time with my son, delved down just a tad deeper and weren’t in such a hurry to come up with a diagnosis. They could have prevented my son and my family from enduring years of stress, an unnecessary move, inappropriate medications, treatments, and placements. Not to mention the irreversible damage to my child’s self-esteem and lack of self-confidence from feeling as though he were “crazy.”

No matter how much love we have wrapped around his fragile soul, he cannot get past his own feelings of self-loathing feeling one day he may not have control of his own mind.  This was only reinforced by Children’s Hospital of Colorado who took his Autism diagnosis away after spending three days with him and then preceded to pull a multitude of misdiagnoses out of their hat.

Children’s Hospital was however able to do what no previous doctor, school, or therapist had done, and that was discover the language deficit disorder.  So I do credit them with that, I just wish they had been able to piece together that his language deficit had to do with the fact that he was, and is, Autistic.

For me, the most disturbing misdiagnoses was given by Dr. Ross at The University of Colorado. I felt that it was such blessing to have an expert in the field of child psychiatry, specializing in childhood onset schizophrenia and childhood bipolar work with my son.  After spending less than 45 minutes with my son, he came back and said that my son was indeed schizophrenic.  It was another blow to my heart.

Taking my son to Dr. Ross and receiving another diagnosis of schizophrenia for my son, was in the end, what compelled me to call NIMH (The National Institute of Mental Health). As I stated in a previous post, I just had a troublesome feeling that something was off.

Lucky for us, where almost every doctor/therapist/school failed my child, NIMH persevered. They did so by taking their time, making intelligent assessments, observing him both on and off medication for an extended period of time, and observing him in varying degrees of social interactions, including a classroom environment.

Granted, NIMH has the luxury of dedicating time and attention over several weeks to several months, which gives them an advantage in diagnosing children and adults correctly.  NIMH is staffed with colleagues who are in the top of their field and truly interested in getting to the root cause of the symptoms an individual is experiencing.  What NIMH isn’t doing, is trying to come up with a quick diagnosis in the 15-30 minutes one seems to be allotted for their psychiatrist these days, and then band-aiding the symptoms with medication that may or may not be appropriate.

In fact, NIMH believes in less medication and more therapeutic supports. I just wish the supports they want you to have for your child were readily available or existed at all.

When our son was misdiagnosed the after-effect was ineffective treatment that may have potentially worsened his symptoms. Despite advancing scientific technologies and new understanding of the human brain, diagnosing “neurological” maladies appears to be a subjective enterprise. Those in the mental health and medical fields diagnosis based on the symptoms being presented at any given time which leaves a wide margin for error. Especially if the frame of reference in which the symptoms are manifesting themselves are taken out of context.

For example, in diagnosing my son doctors concluded that my son suffered from hallucinations and or thought disorder because he appeared to be have difficulty separating fantasy from reality.  He often spoke of demons, battles he fought at God’s side, and a plethora of other seemingly disturbing and extravagant imagery that appeared as though he believed was realistic and incorporated in everyday life.

In reality, my son was exposing himself to inappropriate media such as horror movies and graphic video games. I say exposing himself, because even though we had parental controls on all of our devices, my son had no problem finding his way around them and watching programs and playing games he had no business watching or playing.  The point though is, information from the forms of media he was watching were not being processed through his brain the way others typically process the material.

Think about the times you’ve watched a remarkably frightening horror movie and then went to bed.  In your mind you understand that the movie you just watched was unrealistic, regardless, you feel frightened, ill at ease.  You may think you hear noises outside, the house creaking and settling may begin to disturb you, play tricks on your mind.  Shadows on the walls may appear to move, and you have to remind yourself it’s the shadows from the trees and the wind is blowing. It may take you longer to fall asleep, and when you do fall asleep you may be plagued by nightmares and wake often in the night.  After a day or two and the effect of the movie wears off, you go about your business as usual and you may even chuckle at how silly you’ve been getting so worked up over a movie.  No big deal for you, right?

In my son’s case, he would experience those same feelings of fear and unease only they were compounded by the fact that he has a severe language processing disorder, and extreme anxiety. He is literately unable to flush those images from his mind so easily. All the normal feelings others have while watching those forms of media tripled for my son and lasted days or even weeks after having watched particular movies.

NIMH discovered this while my son was living with them.  I had forgotten to lower the ratings on Netflix and my son was watching horror movies on the IPad.  In the days following he exhibited behaviors and spoke in a way that may have been interpreted as having delusions had the staff not understood the context of those behaviors.  Once the media was removed very early on, there was not a single incident in which it appeared as though he was suffering from delusions or having trouble comprehending reality.

Going forward we have had to ensure that we pay strict adherence in managing my son’s exposure to media so as to protect our son from having these challenges in the future.

Psychiatrists spending less than an hour every few weeks, or even while conducting an evaluation over a week or two time period, would not have been able to determine where the symptoms my son was experiencing were manifesting from. This is why and how his symptoms were misinterpreted and a diagnoses of schizophrenia evolved.  This is the trouble with psychiatry, in essence, it’s a guessing game where if you don’t have all of the conclusive facts, major mistakes are made and individuals are misdiagnosed with serious mental health disorders.

An incorrect diagnosis can and is dangerous, especially for a child.  Clear communication with your doctor is imperative and that can be challenging if you don’t have insight or a logical understanding of what’s happening with your body and mind. Most children do not have the cognitive ability to communicate or even process their symptoms, so a psychiatrist cannot accurately ascertain the information needed in diagnosing unless they are in an environment such as NIMH.

I understand that the majority of mental health care workers do not have the opportunity or luxury to observe patients in the setting that NIMH does. That doesn’t mean though, that doctors should be dishing out diagnoses without a genuine understanding of the symptoms and that can only be achieved over an extended period of time.

Which means 15-30 minute appointments every three weeks does not give doctors or therapists the time to properly observe and build a relationship with the patient so that they may provide a more precise diagnosis.

I do not believe that children should be handed serious and life altering diagnoses such as schizophrenia, bipolar, schizo- affective disorder, or any other major diagnoses if they are under the age of sixteen.

Unless, these children are observed in an environment over an extended period of time both on and off medications so as to limit the potential for serious diagnostic mistakes.  The above diagnoses call for complex and potentially risky psychotropic drugs which can alter or worsen symptoms in children and adults. I know from experience with my own son, just how dangerous these drugs can be, including making my son more aggressive and violent. Something I plan on addressing in a different post.

I am in no way advocating that that all mental health care workers, or doctors are incompetent, although some of the ones we have encountered over the years have made me wonder. I am however encouraging and advocating that every parent and individual seeking professional mental health care for themselves or their child use precaution.  I would suggest that for your child, you seek second, third, and even fourth opinions. Especially if your child is given a serious mental health disorder diagnosis.  Just because someone has a degree, it doesn’t necessarily make them an expert and it definitely doesn’t mean they are correct in their assessment as my family has repeatedly found out.

Technology may have evolved, but the field of psychiatry still has a long way to go in establishing more practical and accurate methods for properly diagnosing and medicating those in need.  My son’s diagnosis still continues to evolve at fourteen. We may not know the full extent of his malady until he is eighteen.

Also, as has been voiced to me on several occasions, whenever possible, “extensive therapy and the minimum amount of medication is the best way to achieve lifelong success in achieving long term positive results for mental health.” Of course, that’s also dependent on whether or not you have access to the therapy you or your loved one is in need of.

“If you expand the boundaries of mental illness, which is clearly what has happened in this country during the past twenty-five years, and you treat the people so diagnosed with psychiatric medications, do you run the risk of turning an anger-ridden teenager into a lifelong mental patient?” 
― Robert Whitaker


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Oops…Your Child Isn’t Schizophrenic After All

“We like to think that the diagnosis that we make will also help to predict what sorts of treatments will or will not be effective for the condition. It’s pretty easy to argue that our current approach to psychiatric diagnosis falls far short in each of those areas.”   ~Keven Turnquist M.D.

bad doctors

This is an updated and edited post from when we left The National Institute of Health eight months ago.

A little over four years ago my son was diagnosed with schizophrenia. For the three years after his diagnosis we struggled with trying to come to terms with not only the illness, but the long-term prognosis, and how we’d manage to obtain the proper supports and treatments.

For much of those three years we were lost, in shock, and dumbfounded that a ten year old could be diagnosed not once, but twice, with this debilitating malady.   To be honest, it was a dark time, and trying to find support, effective treatment, and knowledgeable professionals in childhood onset schizophrenia was near impossible. That is, until we were taken into a research program at The National Institute of Mental Health, NIMH.

For seven weeks we were a part of an NIMH research program for childhood onset schizophrenia at The National Institute of Health, in Bethesda, MD.   NIMH conducts various research studies involving an array of neurological maladies at the NIH campus.  We were lucky that after a few months of communicating with NIMH and sending medical and school records from the last five years, we were invited to participate in their study.

In the beginning, the doctors and nurses working with my son were very careful not to indicate one way or another whether they thought my son truly had schizophrenia.  They only spoke about the behaviors they were seeing and the challenges they felt he was struggling with.

The medical team took their time evaluating our son and advised us to be patient when we prodded them a couple of weeks into his stay as to what they felt was the diagnosis.  It made me feel secure that they were working diligently to determine the true cause of my son’s symptoms and the context in which the symptoms were manifesting.

About four weeks into his stay, we were rewarded with a new diagnosis of autism spectrum, a severe receptive/expressive language disorder, and severe anxiety. In a million years I would never have believed I could be literally thrilled to receive a diagnosis of autism for my child, but I was ecstatic.  My son’s original diagnosis of autism and severe anxiety at six years old was the diagnosis that NIMH had determined to be his current, and correct diagnosis. It was a bittersweet moment for our family.

Once I absorbed the news and experienced the initial feelings of joy, that joy then turned to anger and confusion. Anger, that we had lost three years in which we could have been treating his language disorder and confusion, as to how doctors could have gotten it so unbelievably wrong.

I mean, come on! It’s not as though we were taking him to see quacks all those years. We took him to some of the most well respected psychiatrists and clinics in the country. Yet, these doctors and clinics still, according to NIMH, got his diagnosis wrong. The medical team explained why this could easily occur, but it didn’t help me feel any more at ease over the missed years.

Had it not been for the nagging feeling that the doctors, even the ones that were “so-called,” experts in their field had it wrong, I may never had made the phone call to NIH, and my son would have spent years enduring treatments and therapy that were unnecessary

In my opinion, medical professionals are too quick to make false psychiatric judgments for youth under sixteen. This trend in making inaccurate assessments for the sake of coming up with a quick diagnosis to satisfy insurance companies, schools, and parents, only ends up causing detrimental harm to the child and family in the end.

Doctors at NIMH told us that a child’s behavior is challenging to diagnose because symptoms of anger, anxiety, and social withdraw could all be a part of a temporary condition not related to a mental illness. Some symptoms could be a part of developmental growth or just teen angst that will resolve itself over time. Plus, most times children cannot accurately describe symptoms or process what is happening to them and therefore doctors have to go by what is reported to them by parents, schools, and others who interact with the child daily. That’s one of the reason mistakes are made in obtaining a valid diagnosis before adulthood.

Shortly after leaving NIMH, my family moved to Washington State and tried to begin the long road to recovery for my son and for ourselves. We were hoping to provide him with the social skills classes, speech therapy, and a school environment in which he could thrive.  We had so much lost time and treatments to make up for.

What we found though, was that we had moved to a state whose mental health care system was in a complete and utter condition of disarray. Not unlike so many states in this county.

We found that, unfortunately, nothing was going to come easy, not even holding on to the diagnosis given to us at NIMH. There is a possibility, that our son now has a dual diagnosis of autism and a more severe neurological malady.

The doctors at NIMH warned us that a different neurological malady could materialize as our son aged and symptoms become more pronounced. They warned us that it was extremely difficult to diagnose a child because children are still developing both physically and mentally. It’s starting to look as though they were dead on in this assessment.

So here we are, eight years since the first diagnosis of autism, four years since the diagnosis of schizophrenia, and eight months since the reestablished diagnosis of autism and we are still dumfounded, lost, shocked, and confused as to how we can provide supports, treatment, and significant care in a society where all of these things are practically non-existent or you have to kick, scratch, beg, and fight for any services that you do receive.

Eight years spent advocating, fighting for my child, moving and traveling from coast to coast, specialist after specialist, all in an effort to save and improve the quality of my son’s life and feeling as though we’re stuck in an endless maze that keeps depositing us back to where we began. I can’t quit fighting though, he’s my son, and I love him.

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 

― Maya Angelou


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The Impact of Depression

“I didn’t want to wake up. I was having a much better time asleep. And that’s really sad. It was almost like a reverse nightmare, like when you wake up from a nightmare you’re so relieved. I woke up into a nightmare.”
~Ned Vizzini, It’s Kind of a Funny Story

beauty girl cry

Depression like many illnesses, takes a toll on not just the person suffering from the illness, but on those who love them as well. As a loved one, you struggle with knowing how to help that person, what to say, what not to say, it’s although your living in a house littered with eggshells.   I know that personally, I feel guilty at times because it can be emotionally draining to live with and love somebody who has chronic depression and at times I feel resentful of the impact it has on the family.

Logically, I know that depression is a grueling disease that envelopes every fiber of a person’s existence. It plays cruel tricks on the mind compelling the person into believing that everything that happens is somehow a catastrophic event and that life is an endless series of lows in which one can’t seem to crawl out from under.

I know that depression can and does strain marriages, family relations, and friendships. It contributes to a person’s capacity to feel loved, and have self-worth.   For some, the crushing weight of feeling continuously hopeless, lethargic, or not having an ability to feel pleasure in everyday activities is devastating and can lead to thoughts of suicide.

The thought of death for some, must feel like a release, a way to end the suffering of depression which can literally make a person feel as though the constant surge of emotions, or even numbness is suffocating them.

I have seen firsthand the effects of depression. I have watched someone I love become locked within their own mind and battle for their sanity. I have watched as they self-medicate, spend what seems to be an obscene amount of time in an endless cycle of self-loathing, while barely able to gather the strength to climb out from below the covers and face a new day. I have listened as they blame others for their circumstances, not recognizing that it is the illness at fault and no one else, including themselves.

My emotional side tells me to prattle away to the person with ignorant comments, such as, get it together! Stop feeling sorry for yourself! Life isn’t that complicated! I want them to realize they are loved, they have a great job, and things could always be worse, but those are just absurd statements to make to a person suffering from a medical illness. I wouldn’t tell a cancer patient to “just get over.” Why would I, or anyone for that matter, feel compelled to say that to a person suffering from a mental illness?

The frustrated side of me wants to tell them that I get depressed too. I sometimes have anxiety. My life is overwhelming at times from caring for not one, but two people who are suffering from mental illness, but I don’t have the luxury to stay in bed all day and feel sorry for myself.   I have to get up every day, pull myself together, slap a smile on my face, and confront the day head on while handling my responsibilities. If I can do that, why can’t you?

That there is the key phase “Why can’t you?” The reason they can’t, and I can, is because I’m not suffering from an excruciatingly painful mental illness that has plagued me since childhood and they are. I can try to empathize with the pain, the suffering, and feelings of shame and failure. To some degree I do, I’ve been down that road as a child. I felt abandoned, neglected, as if I was an outcast, and I was enduring years of abuse. I felt I wanted to die and in fact, I did try on occasion to end my life when I was just eleven years old. The difference between my suffering and someone who is facing a chronic mental illness is that my suffering was environmental. Once I was removed from the environment, I spent time in therapy, I gained the tools to move on and lead a somewhat functional life. People who suffer from a mental illness are going to suffer no matter what environment they are currently in and that is the one thing many people fail to understand, including myself at times.

I suppose in the end, I’m not angry with the person who is suffering, I am angry at the illness. In fact, I am infuriated by it because it is tearing away at the very fabric of our family. This wretched disease that slowly eats away at the life of the individual and those who must watch the person they love gradually die away.

Depression is an insidious beast and emotionally, I have a difficult time reconciling with this monster. I miss the loving, intelligent, witty, gentle, compassionate person I know still exists trapped somewhere within this deceptive malady, and I hate the illness that has stripped away what I love most about this person and it hurts.

With my son, I can easily understand and have an endless amount of empathy and compassion. He’s a child, he isn’t being manipulative, and he isn’t trying to absolve himself from his responsibilities. My son doesn’t have the tools to process his emotions and he has been fighting his illness since before he began school and I fully comprehend that.

In all the years that my child has been in therapy I have become an unwilling expert on mental illness, I know what it is, and I know that it is indeed a medical illness with a biological foundation. Do adults who are suffering not deserve the same empathy and compassion as we’d show a child? Most of these individuals have suffered since they were a child as well, and now they are adults who continue to suffer.

With my knowing all that I do about mental illness, you’d think it would be easier to live with but when you’re in the thick of it, it’s difficult to separate the illness from the person, but that’s exactly what has to happen. The impact of depression on the family is palpable and especially when you have a vested interest in the well-being and happiness of the individual who is suffering. For now, I can only wait, be supportive, hope, and continue to believe in the person I love and encourage them to one day seek out help so they’ll no longer have to suffer unnecessarily.

Another thing I can do is remember to keep my own feelings in check while refraining from making potentially harmful comments that perpetuate stigma and could prevent this individual from seeking help. Judgment and criticism serve no one and if I ever hope to inspire positive changes, I also need to shy away from the “Tough Love,” approach. I know it will be challenging, but what else can I do? I wouldn’t abandoned someone who has a life-threatening illness and depression is a life threatening illness for millions of people we meet every day.

If you or a loved one are suffering from a depression, please contact your local NAMI, they can help. I know they’ve helped our family immensely.

 

“There is no point treating a depressed person as though she were just feeling sad, saying, ‘There now, hang on, you’ll get over it.’ Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer.”
Barbara Kingsolver, The Bean Trees


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Mental Illness Is A Real Medical Condition And Should Be Treated As Such

“At the heart of the argument about the mentally ill in this new social construction is the notion that many mental illnesses are not real phenomena. From the viewpoint, “illness” is merely a label applied to the people who commit blameworthy acts rather than a set of real and treatable medical conditions distinct from being simple bad behavior.”

                                                                   Patricia E. Erickson & Steven K. Erickson

                                                                  (Crime, Punishment, and Mental Illness)

suffering 

What is mental illness? Is it a term, or a crutch phrase that people use to absolve themselves from taking responsibility for their actions when they behave in a way that is not conducive to social norms or when they commit a crime? Or, is mental illness an actual medical condition with a biological basis caused by a chemical imbalance in the brain?

When you think of someone with a mental illness do you think of them as being deranged, loony, disturbed, maladjusted, or insane?   Someone who you can’t trust, that you wouldn’t want to leave your children with, have your children play with, or work alongside of daily?

Traditionally, people who suffer from mental illness have a powerful stigma surrounding them, primarily from a large faction of the society who believe that mental illness is a failure of personal culpability, as well as the difference in treatment of diseases of the mind in comparison to physical diseases. Only recently has there been a widespread movement to educate people on the biological factors of mental illness.

Just in the last month I have read research articles on developing blood tests for major depression, and growing evidence showing mood disorders as being glial disorders. According to Fikri Birey, a PHD student at Stoney Brooke College, glia cells in the brain are more abundant than neurons in the cortex and are critical to the functioning of neurons. Scientists have recently discovered that there has been a reduction in glial cells in post-mortem individuals who suffered from severe mood disorders and or schizophrenia. These types of discoveries I feel, are crucial in helping to erase the stigma of mental illness and preventing sufferers from being blamed for an illness they have no control over.

As a mother with a child who has suffered from autism and mental illness since he was five years old, I can personally attest to the fact that these diseases are not made up maladies to excuse one from taking personal responsibility. My son has agonized for years with intrusive thoughts, anxiety, the inability to process events in a way that is typical for the social setting he’s in, understanding social cues so that he is able to retain and maintain friendships, loneliness, isolation, suicidal thinking, impulse control, and explosive behavior.

Imagine for a moment how it feels as an adult to endure depression, extreme agitation, and shame. Close your eyes and think of how it feels to be exhausted and defeated by intrusive thoughts and anxiety. Think of what it would be like if you didn’t have the verbal ability to express how you felt both physically and emotionally. Picture how disheartening it would feel if you had few support systems, no friends, no one who could empathize with your daily feelings of hopelessness. Can you feel it?

Maybe you already know the anguish of those types of emotions, the frustration, the despair of living a nightmare you can’t seem to wake from, but now; imagine you are just a child or a teenager facing that same encumbrance and insurmountable sorrow. Can you envision how incredibly terrifying that would be? Now imagine you live in a society that fails to provide proper therapeutic supports and denies you hospital care because for some inexplainable reason, you, as a person with a mental illness, is less deserving of care and the right to health during an illness than any other person facing a medical crisis.

This is a reality that more than 43 million people in our country don’t have to imagine because they are living that exact reality. It’s a reality that many families are facing while they work to find adequate care for their children. The question I often ask myself is why? Why are we as a country who strives for greatness, continuing on this ludicrous course of discriminating against and castigating those with a mental illness? Where is our humanity? Why are some illnesses more deserving of respect and medical treatment than another?

Mental illness is a medical illness that does not discriminate based on cultural background, age, or socioeconomic standing and every one of us is at risk of developing a mental illness. Just as we are at risk for developing cancer or another serious medical condition, and it’s frightening, most of us don’t want to think about it. I know it’s not something I would like to mull over, but the fact is I have huge risk factors. There is a genetic component, and an environmental factor with the daily stress of raising a child with special needs. Someday I may suffer from PTSD, but sadly if I ever do, I’ll be shit out of luck because I wouldn’t be able to find a hospital bed where we live and I’d have to suffer without proper supports and services much the way my son and millions of others do.

Mental illness should not be a disease shrouded by stigma and at some point I hope those in power will come to the conclusion that we are indeed facing an epidemic of monumental proportion in this country. My son, and every other person with a mental illness deserves to be fought for and treated with the same decency and care that anyone facing a medical crisis is treated with, because that’s exactly what it is, a medical crisis and everyday scientists are making advancements in proving just that.

“Stigma’s power lies in silence. The silence that persists when discussion and action should be taking place. The silence one imposes on another for speaking up on a taboo subject, branding them with a label until they are rendered mute or preferably unheard.”
M.B. Dallocchio

 

To learn more about glia cells and blood tests for chronic depression please click on these links.

 

http://www.sciencedaily.com/releases/2014/09/140917121229.htm

http://www.youtube.com/watch?v=Eo_0U34n2qc


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“No Good Ni**er” A Word With Impact, A Mother’s Dilemma

jordy and Mon

“I have hated words and I have loved them”

~ Markus Zusak

When I was two years old I was adopted into a family of four and raised for many years in a tranquil town on Lake Huron in Northern Michigan. The town itself was quaint and uneventful. We lived on a small ten acre farm surround by golden wheat grass about half a mile from Lake Huron. We had fragrant lilac and crab apple trees, a weathered broken down barn where we tried raising chickens, and a sprawling green forest which grew along the edge of our property behind our modest three bedroom cobblestone home.

It seemed as though the town in which we lived was the ideal place to live, work, and raise a family, had it not been for one minor detail. I was a biracial child living in a small, all white community with an all white family, and was the only minority in town at the time.

Each day that I went to school, I was berated and shamed by being called colorful names such as jigaboo, jungle bunny, tar baby, and of course the ever popular and age old classic “nigger.” Every so often my fellow peers would have a creative inspiration and draw a stick figure in black, write my name on the top, and nigger on the bottom and attach it to the schools brick walls. When I got home, the fun didn’t stop, I was then bullied and ridiculed by my adoptive brother and reminded that I was indeed a “no good nigger” who my parents adopted only because they couldn’t adopt the white baby they really wanted.

This type of racist bullying and verbal abuse continued for close to five years along with physical bullying, because as you know, you can’t be a true bully and racist unless you push around and occasionally sock your victim in the back. It doesn’t matter if you, the bully, is a male, and your victim is a small young girl, as long as you’ve managed to completely dehumanize that person because of the color of their skin.

The bullying and endless racism ended for me when my father was offered a job in California. There, I was able to put the years of torment behind me and move on in a more progressive and civilized community where I was no longer judged by the color of my skin, but embraced for my uniqueness. I still endured bullying by my adoptive brother, but it was no longer as intense since racism was not as acceptable in California as it had been in that small Michigan town.

You may be wondering by now, “What in the world does this have to do with raising an autistic child?” I felt I needed to give a bit of a back story as to fully grasp why and how having someone in my own family use a word that I find to be reprehensible and disgusting, is having such a negative effect on me. Whether I had grown up around bigotry or not, I would still find that word, the “N” word appalling, but having grown up in a community where half the town identified who I am as a human being with that word, well, it makes it all the more difficult to swallow when my own flesh and blood uses that word to attack and degrade me in a fit of anger.

Our son who is autistic, also has a severe processing disorder so we have to be vigilant about what he views on T.V and what he listens to. We have found that our son often takes in what he sees and hears on television, in movies, video games, and music and tries to utilize those experiences in everyday life, including the material that is completely not realistic. It’s been an enormous and ongoing challenge for us as parents to help him interpret media appropriately.

In the last year or so my son started listening to rap music. We tried without great success to ensure that he was not being exposed to explicit lyrics or lyrics that sent a negative message. We obviously failed on all points, because the minute I turn my back or my husband steps away from one of our personal computers, there’s my son working to download inappropriate content. To be honest, his ability to display such stealthy and covert moves to retrieve the content he craves has at times made me question his autism diagnosis. He may have many challenges, being crafty to get what he wants is not one of them.

Since my son began listening to rap, he has fallen into the belief that using the “N” word to demean someone – well, really just me – is perfectly acceptable. Whenever my son goes into an uncontrolled rage, or feels that I have somehow mistreated him by asking him to… I don’t know, let’s say, do his schoolwork. I am then inundated with the “N” word repeatedly along with a slew of other disturbing and crushingly painful verbal insults.

I tried to impress upon my son the significance of the word, the suffering I endured because of it as a child, and how completely inappropriate it is to use that word in any context. My husband expressed this to him, his clinicians, neighbors, friends, even his psychiatrist, all to no avail. I also explained to him that if he used that word outside this home, he would more than likely have his ass kicked or worse.

The way his mind processes information has made him conclude that from his perspective, black rappers use it, he is part black, so that makes him black, and so it is perfectly reasonable that he is able to use that word even if it’s used in a malicious manner.

I have to say, I love my son unconditionally. I work hard to advocate for my son, help him to feel successful in whatever areas that are humanly possible, and I act daily to be mindful of the fact that what he says, is not personal, or is it a reflection of who he is as a person. I understand that he has a pervasive developmental disorder and that I cannot hold what he says against him, but when he uses that word it infuriates me to no end and I feel slightly resentful.

The fact that I feel resentful then brings about feelings of guilt. I know it shouldn’t, I’m human and it’s natural to feel anger and resentment towards someone who is verbally abusing you in such a hateful manner. But the person who is being abusive isn’t just anyone, he’s my child, so how do you balance those emotions? As a parent my job is to teach my son, along with his support team to find more appropriate ways to manage his anger and how to process media content in a way that the negative or inappropriate portions are not used in real life circumstances.

As an adult, I equate people who use the word nigger as being ignorant, uneducated, naive, or just plain vile. Except, those are not words I would use in association with my son. I intellectually understand that he literally cannot understand the impact that word is having on me and it is going to take many Applied Behavioral Therapy sessions to reverse the undesired language and behavior. Emotionally, I just want to smack the word right off his lips, but that wouldn’t do anyone justice, nor would it prevent him from using it in the future. In fact, it would more than likely encourage him to use it more because he knows it’s a trigger.

So the only recourse I have is to express in writing how insurmountable the stress is and continue to show my son love and support in spite of how angry I feel about the situation. Hopefully over time and working with therapists, he’ll be able to understand and have empathy for the heartache that word causes not just myself, but many others who have had to endure blatant racism in their lives.

But the thing I’ve been questioning lately is how I should chose to emotionally respond to that word. A word is word and can only have power if you give it significance, right? For me, as a child being called a nigger made me feel so small and insignificant. I felt as though I should be ashamed of who I am and that the color of my skin made me ugly and unworthy. As an adult, I understand that the color of my skin does not define who I am as an individual and though I still feel anger when that word escapes my child’s lips, the impact of it is beginning to lessen each day until one day, hopefully, it will be nothing more than a meaningless whisper lost in the wind.

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”  ~ Martin Luther King


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A Rising Crisis in our Nation, A Call To Action & A Mother’s Perspective

In light of Mental Illness Awareness week, I wanted to share our story in regards to a personal interaction we recently had with law enforcement here in Vancouver, Wa.  This is the letter I wrote after our encounter and one that our local NAMI is working to share on a higher level because it is such an incredibly important issue and one that we cannot continue to ignore.

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As parents, we all dream of having perfect, healthy, beautiful, and one day, successful, children. We rarely, if ever, stop and think that the magnificent child we held in our arms the day they were born could one day have a severe neurological malady, or a pervasive developmental disorder. We are certainly not thinking that in some cases, these disorders will cause them to melt down, or scream at us with the lung capacity of a maniacal banshee- during which time, they are physically assaulting us, demeaning us with derogatory language, and expressing just how much our death would bring them immense joy. But, this is the truth facing thousands of families across this country.   It’s the truth I live with every day, and it is that truth which has thrust me into the forefront of advocating for my child on a daily basis for the last eight years.

On September 8th of this year, my fourteen year old, 5’7”, 155-pound son with the cognitive abilities of an eight-year-old was having one of these such meltdowns, fueled by a continued adverse reaction to the Lorazepam his psychiatrist had prescribed him as a sleep aide.   He was behaving in an erratic manner and shouting insults, even towering menacingly over me at times. He was also hurling full water bottles from a case on the floor towards me, and anything else within his grasp that was not nailed down. I had no alternative at that time other than to call 911 and ask for deputy assistance, as well as an ambulance transport so I could have him admitted to the E.R. where he needed to be evaluated.

My past personal interactions with law enforcement during times of crisis had left a strong impact on me in regards to how they’ve conducted themselves at our home when my child has a meltdown. At times, there had been positive interactions with law enforcement that had left me impressed with the skill and compassion they had displayed while interacting with my child. Then, there were the times that law enforcement presence had instilled anxiety, fear, and mistrust to the extent that I was unsure that they would be able to keep my child safe with a degree of continued integrity, discipline, and empathy on their part. Personally, for me, calling law enforcement has always been a last resort because I feel it’s engaging in a game of Russian roulette, only it’s my child’s life I’m putting at risk, not my own.

When three Clark County sheriff’s deputies arrived at my home that Monday in Vancouver, Wa., I was distraught, panicked, and frightened, not just for myself, but for my child who was now melting down for the ninth consecutive day and seemed to be losing his grasp on any semblance of self-control. When the deputies entered my home, they immediately began looking around and asked about the location of my son. I led them towards the back of our house where they found him hiding in a closet. At some point they were able to coax him out and he sat calmly but frightened on the bed while officers tried to ascertain what had occurred. Two of the deputies spoke with my son while the third asked if he could speak with me in the living room. In tears, I described the best I could what had happened and explained that my son was diagnosed with autism, anxiety, and mood disorder, and that he was having a negative reaction to medication. As I was speaking to one of the deputies, another deputy who had been speaking to my son came into the living room and began telling me my son “did not present with autism” and that my son was “perfectly aware of his actions.”

At that point, I got up to retrieve my son’s medical records from The National Institutes of Health where he spent seven weeks being evaluated after a three-year misdiagnosis of childhood onset schizophrenia. I showed the officer the paperwork and he barely glanced at it before again stating that my son “did not appear to be autistic” and that in all his years on the force he has never seen a child present so well. He then proceeded to ask for the tablet my son had damaged and inquire as to whether or not I had any visible marks on me. Just as it was dawning on me that these deputies were not here to assist me, but to try and find a way to charge my son with a crime and escort him – not to the hospital, like I requested – but to juvenile hall, I heard my son screaming frantically for help.

I immediately raced towards the back of our home as did the two deputies who were trying to prevent me from reaching my son. As I rounded the corner of our hallway, I saw my son, tears streaming down his reddened face, fear in his eyes, arms handcuffed behind his back, being dragged from our home through a back door entrance to our garage. I kept asking them “What are you doing? My son is autistic! Why are you doing this?” The officers spoke to me in an angry tone and told me my son “was not autistic” and that the officer felt my son had no remorse and knew what he was doing.   Well, a five-year-old can tell you what he’s done and show little remorse, but that does not mean that he is cognizant of the consequences of his behavior. I tried explaining this to the deputies but they were having none of it; they had made up their minds.

Because two of the deputies were blocking me from reaching my son, I had to run to the front of the house, out the front door, and down the stairs to where – now all three deputies – were dragging my son down our driveway. I was relieved to see that the ambulance had shown up, as well as the emergency medical technicians. Had I not requested that ambulance when I called the emergency operator, and had it not arrived when it did, my son would have been taken to juvenile hall without a doubt, instead of to an E.R where he needed to be evaluated.

During the time this was all happening, I was flabbergasted – I could not believe the nightmare I had long feared was materializing before my face. I was in utter shock, and I was angry. I’m watching three deputies and three EMT’s strap my son down to a gurney with restraints, in the middle of the street, in broad daylight, while he is screaming in a blood curdling manner “what are you doing, why are they doing this to me!?” I thought my heart would break into a billion pieces while I touched his shoulder and promised him he would be alright. Through all of this chaos, my son was clutching his stuffed animal he refers to as “Jennifer.” To my son, Jennifer is, “his only friend, the only person who understands him, the only person who can protect him,” but, that day, all she could do was provide him little comfort in a world where he feels out of place and that doesn’t understand him any better than he understands himself.

Once they had my son restrained on the gurney, I turned to the deputy closest to me and told him I wanted a CIT- trained deputy. He looked at me and said, “I am a CIT deputy.” It was like a slap in the face on top of all the other indignities we were facing that day. CIT deputies are supposed to be trained in Crisis Intervention Management, yet, here he was with his fellow deputies causing a crisis situation to spiral out of control, refusing to accept that my son had an authentic diagnosis, and speaking to me in an intimidating and bullying fashion while continuing to tell me that “doctors make mistakes, they are wrong.”

It is these types of conjectures from law enforcement who are being called to a mental health crisis that can lead to deadly consequences. Law enforcement personnel are not in a legitimate position to correctly ascertain whether or not an individual has a mental health disorder. Those officers who are CIT trained have, at best, forty hours of training. They are not psychiatrists or other trained clinicians who have had years of education- training, and practice in the field.

What must be understood is that Autism is a spectrum disorder, and every individual with autism presents differently. My son can and does present very well, but that does not excuse the fact that he is diagnosed with autism and indeed has mental health challenges. If officers had been interested, I would have explained to them that in just the last three months alone, doctors had tried six different medications to support my son with his severe anxiety and mood. Four of those medications (Abilify, Zoloft, Prozac, Lorazepam), had induced psychotic-type thinking, extreme violence, suicidal thinking, anger that endangered his safety and ours, and had caused him to become endlessly unstable over the last few months, which was the reason for my call that day.

In my opinion, it is the type of events that occurred in my home on Sep. 8th, that have law enforcement in this country under such harsh scrutiny, and why there is an absence of public trust in regards to how law enforcement handle themselves. Since this incident occurred, I have met with two of the sheriff department’s commanders, along with a representative from Catholic Charities & National Alliance on Mental Health (NAMI), SW WA, who facilitated the meeting. I felt it was important that the deputies involved in the crisis at our home understood that they did not hold themselves to the highest levels of professionalism and that, to hold true to those standards, it could be beneficial to have further mental health crisis intervention training.

Personally, I do not want to have our family, or any family, endure the trauma or continuing stress we are going through. Especially since my son was sitting calmly on the bed at the time the officer dragged my son off the bed, pushed him against a wall, and handcuffed him. The fact is, the officer in the room talking with my son had lost his cool when my son told him he “wasn’t very nice” and he “shouldn’t be a police officer.”

My concern is: if this was all it took to send this law enforcement person over the edge that day, what would have happened to my son if my son was in a rage the way he was moments before they arrived? Would they have tasered him, or even worse, would they have shot and killed my son if he was still throwing things wildly around the room when they arrived – my son, who deputies did not believe to have a mental health diagnosis? What happens to the next child or family in crisis? When do we say enough, and make the necessary changes to meet the needs of everyone – not just those in crisis, but for law enforcement personnel as well- so that they may maintain an ethical stance, show cultural awareness, and understand the true complexities of mental illness and autism spectrum disorders, while remaining respectful and empathetic during a crisis call?

We are currently facing an epidemic in this country and everyone should be paying attention. It is estimated that 43.7 million adults aged 18 and over in the U.S suffer from a neurological malady such as depression, bipolar disorder, anxiety, and schizophrenia, and there are a staggering 1 in 5 children who suffer or have suffered from a mental health disorder in this country, according to the National Institute for Mental Health. As far as the statistics on autism, the Centers for Disease Control and Prevention CDC state that 1 in 68 children born in the U.S. will be affected.

Law enforcement and crisis lines are encountering people with mental health disorders and or those on the spectrum at an alarming rate in the calls they receive on a daily basis. One of the commanders I met with after the incident at our home told me that they “used to take a call or two a month” in regards to a mental health crisis and now they are taking “two or three calls every day.”

Disturbingly, there is an absence of adequate mental health care services in this country: there is a shortage of psychiatrists or other healthcare professionals capable of prescribing mental health medications, almost non-existent hospital care and or beds for those facing a psychiatric crisis, and a massive stigma surrounding what I prefer to call neurological maladies. This stigma prevents people from seeking the little help that is available, and it prevents people from communicating about their suffering, which may prevent someone from committing suicide.

As a country, we like to hold ourselves to a degree of exceptionalism and criticize other countries for their lack of advocacy and action towards human rights. Yet, we treat our own citizens who suffer from mental illness with such indignities. In a report I read recently, Amanda Pustilnik, Associate Professor of Law at the University of Maryland School of Law, stated that, “Today, our largest mental hospitals are our jails. The jail at New York’s Rikers’ Island functions as the nation’s largest psychiatric facility. Los Angeles’ jails – not its hospitals – are California’s largest providers of mental health care. State prisons alone spend nearly $5 billion annually to incarcerate mentally ill inmates who are not violent.”

Those facing a mental health crisis want what any human being would want: to be treated with respect, dignity, and kindness. Neurological maladies are just that- they are an illness – and those facing these illnesses deserve the same quality of care and support an individual with cancer, diabetes, heart disease or any other chronic and potentially devastating disease receives.

There are some advocating that I file a formal complaint against these deputies, or that I even file suit against the department for the ongoing fallout from the charges that were brought against my son, stress, and the anxiety our family is continuing to endure because we now panic, wondering who we’ll call the next time my son has a life-threatening mental health crisis. But what will that change? Who does that serve? I have a child whose life I am working to save, a child who one day I may have to bury because he feels so determined that he must die because, as he says, “God made a mistake with me,” and because he lives with an organ in his body that he can’t control and that causes him unbearable pain and suffering.   So what I need to do at this time, is not sue, but speak out, not just for local change, but national change in the way we treat people with a neurological malady, and for national reform to our mental health care system, starting with the state of Washington, which has a good track record as a leader in other arenas of health.

In the eight years I have had to navigate the mental health care system to help my child, I clearly see that on many levels, it is so flawed and dysfunctional in this country that it is teetering on the brink of being absurd. On top of that, there is an insurmountable stigma surrounding mental illness. We as a society judge, shame, and stigmatize what frightens us and what we don’t understand, but, if we don’t work to erase those stigmas and provide real support, services, law enforcement training, and hospital care for those in crisis, the percentage of mentally ill in this nation will only continue to rise and so will the consequences of inaction.

I don’t want my son to become a statistic. For me, the time for talk has stopped. Now is the time for unwavering and continuous change in the state of Washington and in the country. Anyone who may have a child, friend, spouse, family member, or is themselves facing a mental health crisis, suffers from a mental health disorder, or works in the field, I encourage you to speak out. If your story can change one mind, if it can enact just one change in our country for the betterment of those who cannot raise their own voice, don’t feel ashamed of your story! Tell it to whomever will listen until we see those changes take effect. I’m just one mother, and I cannot do it on my own.

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