RaisingJordan

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


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The Consequence of Inaction on a Raising Epidemic and the Effect on Caregivers

I wrote this letter and met  and shared it with a local State Legislator who is now helping our local NAMI in receiving funding for an extremely important program our local NAMI is putting together.  I now want to share it with you.

Caregiver

Recently, there was another school shooting by a fourteen year old boy whose life had not yet begun to develop fully. It seems that this young man was suffering, and for reasons unknown, he couldn’t handle the pain he was enduring so he lashed out in the most horrific way imaginable: he walked into his school, and he methodically murdered or critically injured five beautiful souls whose lives were just beginning to unfold and then, he killed himself.

It’s a tale we hear described all too often in our fractured society. Young people who haven’t yet begun to live – feeling such insurmountable pain and suffering, not having the skills or ability to process through their emotions, feeling as though life is nothing more than an endless series of inescapable humiliations and let downs, they proceed to do the unthinkable. They take the lives of innocent, unsuspecting souls whose only crime was showing up to school that day. It’s heartbreaking, and it could be preventable; if we looked at mental health in a different light.

For eight long years I have watched as my own child has been plagued by intrusive thoughts, struggles to adapt socially, battles to suppress unwanted rage, is haunted by visions of monsters, clings to the idea that an inanimate object is his best friend, and verbalizes his desire that he had never been born while wishing to have the courage to kill himself one day. My son understands that he’s different and doesn’t want to continue to deteriorate over the upcoming years.

Including my son, there are five million children in the U.S alone who are suffering from a debilitating mental illness. These illnesses include severe disorders such as schizophrenia, bipolar, and chronic depression. These maladies impact children so severely that they are unable to function in a social setting such as a classroom environment. They have difficulty making and maintaining friendships, and in cases like my sons, some children have aggressive behaviors that spiral so out of control that it leads to violent outbursts and destruction of property.

Families across the socioeconomic scale increasingly have nowhere to turn for help. As I stated in a blog post I had written about an experience we had with law enforcement, 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, and almost non-existent hospital care and or beds for those facing a psychiatric crisis. Because of that, our juvenile halls and prisons have become the new “American Institution” for those suffering from mental illness.

Imagine living with a child or being an individual who is prone to fits of rage that includes violent threats, destruction of property, physical violence, menacing behavior, and verbal abuse. Know that most of these behaviors stem from processing or language disorders, pervasive developmental disorders, bipolar, schizoid-effective disorder, and schizophrenia. I want to make clear that not all people who suffer from these maladies are violent, in fact, a person with a neurological malady is more likely to be a victim of violence then they are to commit a violent act. When these types of aggressive behaviors are involved the person needs intensive therapies and possibly inpatient treatment. The families managing these behaviors need respite, and an opportunity for self-care.

I can’t begin to impress upon you the unbelievable stress of living in a perpetually hostile environment in which you’re working non-stop to manage the behaviors of an explosive child who struggles to verbally express their emotions in an appropriate manner. These kids end up relentlessly lashing out and wreaking havoc in the home and sometimes at school. I don’t think it’s possible to convey the magnitude of trauma it inflicts emotionally on the caregiver. I personally spend at least four hours a day being screamed at, insulted, and called vile and racist names by my own child. I am punched, kicked, slapped, forced to go to bed when my child goes to bed because his extreme fears and anxiety prevent him from being able to handle being alone. If I don’t go to bed when he demands, then he has an explosive meltdown and threatens my life and towers over me menacingly until I comply.   My partner is forced to stand on the sidelines powerless to intervene because the moment he says something, everything escalates to epic proportions and our home becomes a war zone, in fact, it is a war zone and we are in a constant battle for my child’s life and our own safety and sanity.

No one should have to live this way. No one! But what choice are we given? Where are we supposed to turn? Are we supposed to call law enforcement and have them come traumatize our child further? Are we supposed to allow law enforcement to take our child to juvenile hall where for some reason this country feels compelled to treat people having a mental health crisis – in our prisons and in juvenile halls? Or perhaps we can call law enforcement while he’s having an explosive meltdown so they can overreact, escalate the situation because they’re ill-equipped to manage a mental health crisis and then have some quick on the trigger sheriff use deadly force on a child whose crime was to have been born with mental illness and autism? I mean really, what are we as parents and caregivers supposed to do?

The shortage or complete lack of mental health care in this country should be the crime. The treatment of those facing a mental health crisis and those caring from them – is nothing less than inhumane. How can we as a country have the audacity to insinuate that somehow we live by a higher set of moral standards then the rest of the world when we treat our most medically disadvantaged citizens with such utter disregard and allow the mentally ill to languish on our streets and in our prisons?   The stigma we inflict upon those with a mental illness is just as palpable as seen here in this short quote. Gullekson (in Fink & Tasman, 1992) writes about her brother’s schizophrenia: “For me stigma means fear, resulting in a lack of confidence. Stigma is loss, resulting in unresolved mourning issues. Stigma is not having access to resources… Stigma is being invisible or being reviled, resulting in conflict. Stigma is lowered family esteem and intense shame, resulting in decreased self-worth. Stigma is secrecy… Stigma is anger, resulting in distance. Most importantly, stigma is hopelessness, resulting in helplessness.”

We have stripped state after state of much needed funding for mental health treatment. Instead of fixing the core issue of mental health hospitals, and ensuring those institutions had a civilized and humane environment where a person facing a mental health crisis could receive treatment – we shut them down and threw the sick out onto the streets with nowhere to turn for services and no resources to afford essential medications or treatments for quality of life. If that isn’t enough, we force parents to be caregivers of explosive children who jeopardize the safety of themselves and everyone in the home and in many states, like Washington, there is no recourse and no respite care for these families. Honestly, we rarely if ever receive a break from the monotony of hostility and then people are appalled and in shock when a mother tries to kill herself and her violent autistic child when she can’t find help.

I’d love to see someone who is advocating for less funding towards mental health care and hospitals, or someone who is a mental illness denier live the way we live for two weeks. Then I’d like them to look me in the face and tell me that we don’t need funding for mental health care services, that we don’t need to provide proper training for first responders, that we don’t need to provide hospital beds for those in crisis, and respite care for caregivers.   The majority of people in this country couldn’t handle one day of what we as caregivers to mentally ill children face every day.

For eight long years, I have advocated for my son and tried to navigate through this convoluted joke of a mental health care system that we have here in America and somehow we just end up back at the starting line never seeming to make significant progress. For me, there are just too many lives at stake to not take action.

What people fail to realize is, that if we don’t fix these vital issues regarding mental health, and fix them now, all these children who are suffering from neurological maladies without proper supports, treatments, and coping skills – are going to be adults soon. We already have 43.7 million adults currently in the U.S suffering from a debilitating neurological malady so what are we going to do about it? What is it going to take to do the right thing? How many lives have to be lost? How many people do you need to see piling up on our streets? How much more money has to be put into prisons to house people who should be receiving humane treatment in hospitals? I mean, seriously!? What is it going to take to make people act on this national crisis?

There are some in our society who continue to falsely believe that mental illnesses are made up maladies that people use as a way of absolving themselves from taking responsibility for their actions. The fact is, neurological maladies are a real medical condition that affects the brain and disrupts a person’s thought pattern, emotions, and ability to regulate mood leaving individuals with a diminished capacity to handle the everyday stressors of life. In some cases, people require hospitalization, and or intensive wrap around services provided by local mental health care coordinators, or a combination or both.

I am asking that you please set aside your false perceptions of mental illness (if they exist for you), and insist that we provide quality mental health care service, and respite care for caregivers. There is much work to be done and I’m told that “it will take years to affect even the smallest of changes because of all the roadblocks mental health care advocates face.”   I can assure you that our family, does not have years. We are in crisis right now along with millions of other families and individuals across this country and we are desperate for help.

I know that there are multiple mental health advocacy organizations in this country like NAMI, Mental Health America, Bring Change to Mind, and Catholic Charities that work tirelessly to affect change and I know many of these organizations have brilliant ideas on how to restructure and build up our mental health care system across the country. I know that NAMI is currently working to train first responders, schools, and any other organization who are open to it on mental illness and how to effectively respond to an individual in crisis. And they are providing this crucial service for free at this time but funding is needed to reach every individual who could utilize this indispensable training.

There are so many ways in which we can turn this epidemic around but it’s going to take a collaborative effort on the parts of multiple organizations, community members, and state representatives. It’s time to stop sweeping these issues under the rug and take comprehensive action.

I recognize in today’s culture of mass media, rigid thinking, a lack of compassion, and unwarranted criticism that puts those in the public eye under constant scrutiny it’s exceedingly difficult to take a stand for what’s right, for what one believes in. But one of the reasons this country was considered to be great in the first place and why other nations respected us as a leader and a trail blazer was because its citizens from all walks of life were not afraid to fight for equality, human rights, freedom of speech, and for those less fortunate to be treated with dignity and humanity. They are the morals in which this country was founded on.

Individuals with severe mental health challenges and those who care for them during times of crisis need a champion. We need someone to take up this vital issue which is plaguing the entire nation.  If we are to ever improve the lives of people with mental health maladies and the people who care for them, action, not talk, is essential.

Thank you.


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A Time To Breathe

“Each person deserves a day away in which no problems are confronted, no solutions searched for.”
~Maya Angelou

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It feels as if an eternity has passed since I’ve been able to share good news, but for the first time in a long time things are looking better for my son.

Last week my son’s doctor stopped the lithium as it was having the opposite effect on him. Instead of helping him to remain calm, he had become angry and lost his inhibition. He started making bizarre and inappropriate comments to people and in places he would have felt to shy or to anxiety ridden to have even uttered a word prior to the medication.

His new doctor suggested we put my son back on abilfy but with an added medication. He felt the reason the abilfy had been ineffective in the past was because it was causing him to have severe restlessness and anxiety. He suggested adding a beta-blocker and so far, we’ve had great success.

After months of non-stop meltdowns and hostility we have finally had a week of peace. Instead of waking up to screaming and insults, I wake up to a smiling face.

Instead of being perpetually insulted, I actually received my first apology from my son for hurting my feelings in about three years. I feel as though I finally have my child back and it has been amazing.

There was a time there, that I didn’t think either my son or I were going to make it another day with our sanity intact. I was at the end of my rope with few outside supports. My son was at the end of his rope and on the brink of facing serious consequences for his behaviors that he had no control over. It seemed our situation was hopeless and I was having difficulty visualizing a positive outcome.

I’m so glad I never gave up. Even if this is a “medication honeymoon,” having my child come into reality and be a compassionate and caring human being if only for a short time is a miracle in itself. After all the insurmountable stress we’ve all endured the last months, this is a beautiful gift and I’m going to savor every moment of it.

I needed respite. I needed a breather. I needed just enough time to emotionally recuperate from the stress and pull myself back together so I could be an effective parent and a loving parent once again. Thankfully, I’m now managing to receive that break.

I’m confident now that there is hope and that my son will continue to make progress. I know now that my child is still there underneath the illness and that’s all the inspiration I need to continue the fight against his malady and for improved supports for others who are suffering.

The impact of the last several months has taken a toll on my family. A toll that unfortunately my partner and I may not recover from. I believe there are some people who are not built to withstand so much chaos and turmoil in their lives and I understand that. What we’ve been through as a family these last years could have broken the strongest of us.

Bowing out gracefully is not an option for me. I have a child who needs me and I don’t intend on giving up on him any time soon. Our journey is far from over and I know there will be future struggles, but for now, I’m just going to take a moment to breath.

 

“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 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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