The Trouble With Psychiatry

Image

Every single time you help somebody stand up, you are helping humanity rise up.”  ~Steve Maraboli

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 few years of rotating diagnoses that we were given in regards to my son.

It’s not only infuriating to find out that your child has been consistently and repeatedly misdiagnosed with an array of  extremely challenging and life altering diagnoses, but it is also deeply alarming.  How is it possible that so many “so-called” 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.  Not only had The Children’s Health Council dropped the ball in diagnosing my son properly, but they missed a significant diagnosis of severe language deficit disorder.

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, They evaluated him and had him tested by various 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 wrapped around his fragile soul, he couldn’t get past his own feelings of self-loathing knowing 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 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, but it wasn’t the end for our family.  In fact, it was the beginning.

Had I not taken my son to Dr. Ross and received another diagnosis of schizophrenia for my son, I would have never sought out help at NIMH (The National Institute of Mental Health). 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.

When a person is misdiagnosed the after-effect is ineffective treatment that may potentially worsen symptoms.  I know this to be true in our own situation. Despite advancing scientific technologies and understanding of the human brain, diagnosing “psychiatric” disorders 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 representing 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 has been living with them.  I had forgotten to lower the ratings on Netflix and my son was watching horror movies.  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 the behaviors.  Once the media was removed very early on, there has not been a single incident in which it appears as though he was suffering from delusions or having trouble comprehending reality.

Going forward we have 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.  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 a 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 accurate diagnosis.

I do not believe that children should be handed serious and life altering diagnoses such as schizophrenia, bipolar, schizoaffect 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 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.

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.  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 life long success in achieving long term positive results for mental health.”

“Courage and perseverance have a magical talisman, before which difficulties disappear and obstacles vanish into air.”  ~ John Quincy Adams

Oops…Your Child Isn’t Schizophrenic After All

  bad doctors

“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.

 My son was tragically and, (as we have just recently come to find out), mistakenly diagnosed with schizophrenia.   For the last three years my son, and my family have been wrestling with the devastating diagnosis and trying to come to terms with the long-term prognosis.  It was shocking to have our then ten year old diagnosed not once, but twice, with this staggering illness.   As it turns out, the doctors, and therapists were WRONG.

The last six weeks we have been a part of a research program for childhood onset schizophrenia at The National Institute of Health.   The National Institute of Mental Health conducts various research studies involving an array of mental health illnesses at the NIH campus.  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 research.

The doctors and nurses working with my son had been cautious in not indicating one way or another whether they thought my son truly had schizophrenia.  They spoke to my husband and I about the behaviors they were seeing and the challenges they felt he was dealing with.  They took their time, advised us to be patient when we prodded them a few weeks into his stay as to what they felt was happening with our son.  The staff worked together as a team to determine the true cause of my sons symptoms and the context of how they were materializing.   Last Tuesday, we were finally given a diagnoses and I could not be more elated.

In a million years I would never have believed I could be literally thrilled to receive a diagnosis of Autism for my child, but yes, we are now proud parents of a child with Autism.  My son’s original diagnosis of Autism and severe anxiety at six years old is the diagnosis that NIMH has determined to be his current and correct diagnosis.  Which means, The Children’s Health Center of Palo Alto, Ca., who originally diagnosed my son with schizophrenia was erroneous in their findings.  As was, Dr. Ross from the  University of Colorado who was supposed to be an expert in the field of COS and childhood bipolar.  Also, The Children’s Hospital of Aurora, Co., who took away my child’s original diagnosis of Autism, which led us into a downward spiral of missteps that were detrimental to my child’s health and well being.

Had I not had the nagging feeling that the doctors, even the ones that were “so-called,” experts in their field were wrong,  I may never had made the phone call to NIH.  My son would have spent years on the wrong medications. He would have spent time enduring treatments and therapy that were unnecessary. My son would have had this faulty stigma placed upon his head and suffered a lifetime of being treated in a way that no child (or human being), should ever be treated by our society.

As it is, my son already voiced wanting to hurt himself because he felt as if he were crazy and no person could ever love him.  As much as we tried to encourage him and lift him up, he still felt miserable about himself, and for what?  Because a slew of psychiatrists, psychologists, and therapists, couldn’t take the time and effort to really understand the behaviors my child was displaying.  Everything that my son and my family has been experiencing for the last few years could have been avoided.  In fact, situations such as ours should rarely, if ever happen.   Medical professionals are too quick to make false judgments and inaccurate  assessments for the sake of coming up with a quick diagnosis to satisfy insurance companies, schools, and parents.

My family will now begin the long road to recovery for my son and for ourselves. We will provide him with the social skills classes, speech therapy, and school environment in which he should have been placed years ago.  We have so much lost time and treatments to make up for. We still have five more weeks at NIH in which they will determine which medications they will use to treat his anxiety.  They will be giving us a complete report soon and continue to support us with any and all doctors, schools, and various professionals who will be working with our son over the next few years.

Whether or not NIMH had concluded that my son indeed had schizophrenia as he had been previously diagnosed, we would have continued to love and support our son unconditionally.   A diagnosis of Autism though, is one that will help to make my son’s life just a little bit easier.  We still have many hurdles to overcome, challenging behaviors to manage, none of which will be easy and will take many years to work though. Including, undoing the damage his previous doctors have done.  One hurdle we won’t have to overcome though, is having our child dragged across the rotating wheel of false diagnoses ever again. We owe everything to NIMH and the incredible staff at NIH.

“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

During Times of Chaos & Insanity… There is Hope

what doesnt kill us

“In order to understand the world, one has to turn away from it on occasion.”   ~Albert Camus

There are times in ones life that the weight of our burdens become so astoundingly complex, so crushingly painful, that you need to take a step or two back away from friends, family, society, the world itself. There are those times in each of our lives that darkness quickly closes in. To recapture the strength that lies temporarily dormant within ourselves, and climb out from the depths of our sorrow,  for some, isolation in a sense, becomes a sanctuary.

There are individuals in this world who in times of need and desperation can emerge from their shell, ask for help, share their troubles, and lean into the love and support of others without hesitation.  They have the innate ability to ride the waves of chaos and insanity of life in such a way that it’s admirable. I…am not one of those people.  I myself stand in the center of the first paragraph, in which I shy away from the world temporarily in an effort to reboot (so to speak), and then come out swinging.

That’s not to say that I just close the door completely and slink away from society into a self-deprecating love fest.  No, not at all. What I have found, which surprised even myself, was that I don’t lean into the arms of others for support. I don’t make the phone calls, write the emails, write on my blog, or even write in my journal about how exceedingly unbearable my life has become at any given moment.  I do make the occasional note of frustration on FaceBook when I feel there may be a moment in which I might realistically grope my head, dig my fingers in, and pull each tiny follicle from my tender scalp.  Otherwise, I emotionally recoil into myself,  paste a smile on my face and maneuver through each day as though life is a splendid delicacy waiting to be savored.  In truth, behind the smile, the lighthearted  laughter, and quick witted banter, is a soul slowly withering in the darkness, trying to figure out a way to live with some sense of normalcy.  Trying to determine if, how, and when I could pull my child from the thick recesses of his twisted sense of reality and downward spiral of increasingly violent and dangerous thought distortion.

That, in a nutshell, is where I’ve been since a few short months before the holidays. The holidays, which at one time, represented the more jubilant moments of our existence have now turned into a time of stress, dread, and frustration for our entire family over the years. For my son, the holidays are a time of immense anxiety which then morphs into a time of anger, rage and a complete lack of impulse control.  While most parents are running around trying to find the perfect gift and looking forward to a day filled with love, family, and the joy of smiling faces as little ones open their presents.  My husband and I were walking on eggshells, quickly purchasing gifts we knew would keep our son occupied long enough that we could have a few days of respite.  A few days in which we were not being screamed at, insulted, having our home turned upside down, or making trips to the ER.  Our only Christmas wish was to have a day of peace, a day in which the pandemonium that  had become the norm in our increasingly uncivilized lives would just take a f***ing break and let us have one normal quiet day that we could actually enjoy. It never happened, but one could still wish, right?

What happened in those months of solitude,  inner reflection, and weeks of research, phone calls, and whispered prayers in the quiet nightfall, came a glimmer, just a small ray of hope in the midst of our chaotic lives.  In the days following my son’s second diagnosis of schizophrenia and his inability to function in a mainstream special education classroom which caused him to (thankfully), be moved to day treatment, (a move the school he was in was against, but as an avid advocate of my child, it was a move I was giving them no other choice but to make).   During that extremely arduous time in our lives I was able to connect with NIMH (National Institute of Mental Health), at the NIH campus in Bethesda, Maryland.   I filled them in on our situation and they asked for all of his medical files from the last five years.  I quickly sent them in and had all consent forms signed and faxed so they could communicate with his past and present doctors, teachers, and therapists.  As days turned into weeks and weeks into months, we finally got the call that allowed us to breath for the first time in years.

NIMH was interested in meeting with our family and doing an intake with us.  They wanted to fly us out all expenses paid and spend a few days evaluating my son. If they felt he could possibly have Childhood Onset Schizophrenia they would then invite us to be a part of a trial at their NIH clinic for 2-4 months.  My son would live at the hospital and be under constant care and I would stay at the Inn on campus. We had our intake on January 15th and have been here at NIH ever since.  I can’t begin to express the astounding amount of care that my son is receiving.  For the first time in the seven years that we have been grappling with the devastating circumstances of our son’s illness and the destructive and heartbreaking manifestation of his symptoms, we finally have reason to hope.

During the months of isolation and discord there were times in which I felt as if small parts of who I once was, were slowly dying.  Each day I was mourning and grieving for the child I loved, the once vibrant, carefree boy who filled my days with joy, I now barely recognized.  Instead of expressing his love of me, he expressed his wish that my death may come and threatened daily, weekly, to slash my throat.  I felt at times, that this was it, this was the life I was given and it was a life at some point I should just succumb to. The thing is though, I’m a fighter.  I  always have been, I’ve always had to be. My life has never been easy and the road to which I have traveled has been fraught with loss, heartache, turmoil and  unavoidable negative circumstances that were no fault of my own.  Along that road I never detoured, I never gave up, and I always continued to move forward.  Knowing my son has been unable to fight for himself, I knew I needed to fight for him, as parents, it is our responsibility. More than that, I love my children, I love my son, and have no plans on deserting him or giving up on him.  There are times you must turn from the world and find yourself, but you must always turn back and face what you’ve been shielding your heart from.

NIMH has given my family something I thought we might never know again.  It has given my son a safe place to reside where they are working diligently each day to determine what exactly is causing my child’s symptoms.  They have been thoughtful, kind, uplifting, and their assessments thus far are intelligent and educated, never forced, rushed, or contrived. They have given my husband and I much needed respite.  For the first time in so many years I can ramble through a day stress free and we have even had a few date nights.  The staff at the Children’s Inn, and their volunteers have been amazingly kind. We have had the great privilege to meet  and befriend extraordinary individuals who each day are fighting to save their own lives as they battle cancer and other devastating illnesses.  Meeting these very young exceptional people has really helped us to put our own situation into perspective.  To watch these kids fight with such courage and grace reminds me what a blessing each day is, no matter what your circumstances.

As we move into phase two of my son’s treatment I wait anxiously for a diagnosis.  They have said they don’t see or feel that it is schizophrenia, but the next few weeks will tell them more.  No matter what his diagnosis is, the only thing that really matters is that he is my son, and I will love him no matter the outcome and I will never give up on him or my daughter.  I encourage any parent who is fighting to help a child with a serious mental illness or autism, to contact NIH/NIMH and see if they have a research program that could be beneficial for your child.   http://www.nih.gov/health/clinicaltrials/findingatrial.htm

In the months to come I will post more frequently about the care and outcome of my son and my families journey here at NIH.  If I can help anyone with questions regarding treatment here, please feel free to contact me.

“Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all”  ~ Emily Dickenson

Why Are Mental Illnesses Treated Differently Than Other Illnesses?

Image

The mentally ill frighten and embarrass us. And so we marginalize the people who most need our acceptance.  What mental health needs is more sunlight, more, candor, more unashamed conversation.  ~Glenn Close

Recently, I read an article on Slate by Larry M. Lake called Comfort Food. In the article he spoke of the stark contrasting differences in the treatment his family received when his wife was diagnosed and became ill with breast cancer and when his daughter was diagnosed and became ill with bipolar.  When his wife was sick, people rallied and brought homemade dishes, offered rides, showed up at the hospital with ice-cream and so forth until his wife went into remission.  When his daughter became ill, there were no homemade meals, no offers of rides or support,  they faced the challenges of their daughters illness alone.  It  was a thought-provoking article in that it helped me to see (what I really already knew), how very different physical and mental illnesses are treated in our society.  The question begs to be asked…Why?

Over the years I have known many people who have faced challenges in overcoming mental illnesses, addictions, and or various  disorders that are mind centered.  I personally have never looked at illnesses of the brain differently than I have any other illness. The brain is an organ, as is the heart, lungs, liver, e.t.c., and at any given time these organs can develop cancer or any other numerous diseases caused by stress, exposure to toxins in our environment, or from a genetic predisposition.  All of these organs have the equal ability and potential to heal and once again become healthy from changes in lifestyle, medications,  and appropriate treatment.  Somehow though, the organ we discriminate against when it becomes ill is the brain.  Perhaps because those are the illnesses that frighten us the most and are the most misunderstood.

When people become sick with cancer, there is so much support from within ones family and outside ones family.  Recently, a very dear man, my son’s grandfather, was diagnosed with stage five cancer. It was a terrible time for all those who loved him and knew him.   During his brief illness people rallied around him much like they did for the wife in the article Comfort Food.  There were offers to drive him to and from appointments, people sat with him during Chemo, they visited him in the hospital, organized a schedule for people to bring food, and started a web page to inform others of his progress and to have others leave words of encouragement, love, and support. The support was not just for him either. it extended to those who were caring for him during this very difficult time.  They were beautiful gestures during an unthinkable time while a family dealt with an illness and sadly, a passing of someone they loved.

But what about the families of those dealing with someone who is mentally ill?  They too are making frequent trips to hospitals, doctors appointments, and specialists. Some families have to travel miles or States away when their children need to be hospitalized, often times leaving one parent at home while the other parent stays in a hotel close to the hospital for days, or even weeks at a time.  These families are exhausted, overwhelmed, frightened, and at times isolated from family and friends due to their child’s illness.

How wonderful would it be for these families to have others rally around them and occasionally bring them food because they are too exhausted to cook? How grateful would these families be to have someone come and sit with their child so they could have a night off, or for someone  to start a webpage to encourage them and their child with words of support during their difficult journey?

Families caring for a child or another individual with mental illness, are often times dealing with the same stresses as a family who is caring for a child or individual who has a physical illness such as cancer. Including, wondering how long they have with their child.  Individuals with a severe mental illness have a shorter lifespan, it is thought to be 13.5 to 32 years shorter.  According to Psychiatric Services, more than 90% of suicides are a result of a mental illness and individuals with bipolar disorder  have a 10 -20% lifetime risk for suicide. Also, people taking medications for mental illness have a greater risk for heart and liver disease, as well as other complicated physical illnesses that result in negative outcomes.

The stigma of mental illness…. the fear, shame, embarrassment,  misunderstanding, ignorance, and at times intolerance, needs to be stripped away once and for all, so that all diseases can be treated in our society as equals.  There was a time not so long ago that cancer was a misunderstood disease.  According to a Cancer.org website, in the 17 & 18 centuries people believed cancer was contagious.  The first cancer hospital in France was forced to move outside the city because people feared the disease would spread throughout the city.   Now that people have a better understanding of the terrible disease, our society works tirelessly to bring awareness, support, and funding to the cause and cure of cancer.

When I read articles such as Comfort Food it brings a sense of sadness because I can relate to what the families experiences were.  Because I am a parent of a child with a severe mental illness, I have seen first hand how differently illnesses within our own family are treated. And although it warms my heart to see the love and kindness bestowed upon those dealing with a life threatening illness, I believe that the same kindness and support should be shown to the family dealing with a mental illness. Mental illnesses can just as easily be life threatening and happen unexpectedly. It’s a fear and thought that never wanders far from a parents thoughts, wondering when or if they’ll lose their child to suicide or an adverse reaction to medication.

 In the end, Comfort Food wasn’t about the food, it was about having the same compassion, showing the same kindness, and offering the same support you would anyone who was dealing with a devastating diagnosis. Whether it’s physical or mental, it shouldn’t make a difference. The effect it has on the family living daily with the disease are the same.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” 
― Mother Teresa

Comfort Food:

 http://www.slate.com/articles/life/family/2013/11/families_dealing_with_mental_illness_need_support_too.1.html

Another Ordinary Sunday

Image

Be not angry that you cannot make others as you wish them to be.

~Thomas a Kempis

Sunday… a day for watching football, getting end of the week chores out of the way, or perhaps lazily laying around reading your favorite book, right?  Not exactly, at least not the Sunday in our house yesterday, it played out just a little bit differently.

I knew we were in for an adventurous day when my son woke up that morning and immediately began obsessing over breakfast, followed by obsessively asking if he could phone a friend of his in the hopes that his friend could come over that day.  You might be thinking to yourself  “what’s so out of the norm about that?  A teenager boy wanting food and friends. what’s the big deal?”  Normally, in most families that wouldn’t be a big deal unless you have a child with obsessive-compulsive tendencies, an inability to empathize, and  impulse control challenges. When you combine those challenges together, the small issues (like breakfast), become huge issues in a matter of moments.

When Jordan came downstairs the first words out of his mouth were “I’m hungry, make me breakfast.” I calmly and politely informed him that he should go make himself some cereal or wait for about thirty minutes and I’d make him and my husband cinnamon rolls. Bewildered as to why he should have to wait thirty minutes, Jordan began to whine, complain, and repeatedly express to me how “I should get up off my lazy ass and get in the kitchen and make his breakfast,” (as you can tell, boundaries and respect are not one of my son’s strong suits). I informed him again that I was in the middle of doing something and reminded him of the options I had given him previously. You’d think it would end there, but no, he continued to make remarks about how he was hungry and I needed to attend to his needs immediately.  I chose to ignore the behavior and carry on with what I was working on. When the thirty minutes were up, I made him the cinnamon rolls. Instead of a thank you, I received a ” It’s about time you got off your ass and made my food.”

Immediately after breakfast Jordan wanted to call his friend which wasn’t a problem. I explained that he could call his friend once and only once, after that he’d need to wait for his friend to call him back if he didn’t answer. We love that Jordan has a friend who enjoys spending time with him and doesn’t mind the little idiosyncrasies that may bother another individual. The problem occurs when his friend doesn’t answer the phone. Jordan becomes anxious, frustrated and obsesses over why his friend is not answering the phone.

A few years back Jordan had another friend who had a hard time working through some of my son’s challenges, which is perfectly understandably. Jordan would constantly call this friend, want to go to his house (he lived right next to us), and had a difficult time understanding when this child was unable to spend time with him.  It would cause him to have severe meltdowns at home and exhibit self-deprecating behavior. Unfortunately, in the end, Jordan had ruined the friendship.  Jordan’s friend felt overwhelmed and couldn’t handle Jordan’s persistence in spending time with him.  It was extremely heart-breaking and I knew it caused my son to take a huge hit to his already fragile self-esteem. My husband  and I had tried to prevent him from calling this child repeatedly, but Jordan just logically could not understand why it wasn’t appropriate. In his mind, he saw absolutely nothing wrong with his actions.

Needless to say, my husband and I now try to ensure that Jordan doesn’t repeat the mistakes of the past. So when Jordan was unable to reach his friend yesterday morning we were prepared for what the day had in store for us, we’ve gone though it more times than I can count.  Within minutes of hanging up the telephone my son spent every five minutes repeatedly asking to call his friend again and again. He berated himself continuously saying that he feels everyone hates him, he wishes he were dead, and that one day he promises that he will kill himself.  It is an absolute heart-wrenching and painful episode to watch play out. No matter how we try to comfort him, distract him, assure him, none of it makes a difference. He is unable to banish the black obsessive thoughts churning in his mind and the growing darkness creates a mist that blurs the colors of reality and turns his world upside down.  These episodes will continue throughout the day until his friend returns his call, which happened around five that evening.  Once he is able to speak with his friend the mist clears, reality reemerges, and there is once again a small light within the darkness that had enveloped his mind.

At the end of the day my husband and I are mental exhausted and ready for a good nights rest,  only Jordan’s brain has other plan’s.  After spending the day caught in an obsessive thought pattern, his brain is now wired and unable to unwind itself.  I knew at this point, our difficult day, was now segueing into a prolonged and difficult night that was most likely not going to include much sleep on mine or Jordan’s part. Fortunately though, after suggesting he take a long hot shower and listen to some relaxing music on his kindle he was able to finally fall off to sleep around one in the morning. I can’t tell you how thrilled I was to not be spending another night being awakened every thirty minutes until six in the morning as I had the weekend before when we had a similar situation.  Now if I could only have gotten my husband to stop snoring I could have had a perfect six hours of sleep, maybe next time.

“I don’t possess these thoughts I have…they possess me. I don’t possess these feeling I have…they obsess me”    ~Ashley Lorenzana 

What The Books Forgot To Mention

Image

“Perhaps it takes courage to raise children.”   ~John Steinbeck

As parents, we all dream of having perfect children who love us as unconditionally as we love them. If we ourselves had less than an idealistic childhood, we dream of a better childhood for our children.  We want our children to be well adjusted, socially accepted by their peers, successful, and most of all, loved. No one prepares us, or tells us, that one day that precious bundle of joy we brought into this world could have a mental health disorder that causes them to  scream at us with the full force and lung capacity of a banshee.  We’re never told or prepared for the  potential, that in just a few short years, we could have a child that belittles us, expresses often how much joy our death would bring to them, while at times, also physically assaulting us.

Nineteen years ago when my daughter was born, I read all the “What to Expect When Your Expecting,” books. I read them again six years later when my son was born. I didn’t notice anything out of the ordinary according to what I had read in those books, and both my children met all of their milestones with flying colors. Mental health disorders and Autism were not in those books, and if they were, they were a small unnoticeable blurb at the time.  What those books didn’t mention is that one day you could be meeting with a stream of doctors and psychologists, become an expert on IEP’s, and learn everything you need to about specialized classrooms.  The book also forgot to mention that my son might one day kick me, run away and hide from me, become hysterical for no apparent reason, yell obscenities at me, or possible hurt himself or others.

By the time Jordan turned eight years old I was pretty much an expert on all things to do with Aspergers, anxiety, and mood disorders since that’s what we were told we were dealing with at the time. I had scoured the Internet, read every book on the subject, spoke with doctors and educators and finally came to terms with what would be considered “normal” in our home. As time went by newer and more complicated and destructive behaviors began to manifest themselves.  When I spoke to the doctors they expressed concern, but at the same time informed me that these behaviors were bound to increase and become worse into his teen years with the start of  hormones.   I soon realized that the word “normal” was going to be a word that would be constantly reinventing itself for myself and those in our household.

The books I read prior to the birth of my children told me when my children should crawl, sit up, speak, and take in solid foods. They didn’t tell me that my son would try to one day hurl himself from a moving vehicle, nor did it give me advice on how to get my child to sleep in their own bedroom without having a six hour meltdown about it. Suffice it to say, my son is still at thirteen, sleeping in our bedroom. His extreme fear of being harmed if he’s alone and propensity for meltdowns should we enforce where he sleeps,  led us to relinquish that particular battle.  In fact, if anyone has had success in that department I’d love to know how you did it.  We have literally tried everything short of strapping him in his bed at night and nothing seems to work.

I have learned over the years that many parents and parenting books are comfortable talking about therapies they have tried or you should try, special diets, and other behavioral management tools. The subject most often avoided is that of the aggressive and violent child and it shouldn’t be. Parents shouldn’t be left to learn the hard way about something that is so imperative for us to know about. We as parents need to be prepared for all potential outcomes in our child’s development and behaviors.  For me personally, I tried to downplay just how aggressive my child could be to those who didn’t need to know.  I was afraid of what people may think or if they would unfairly judge my child or others with similar disorders or Autism. Not all children who have a disorder are aggressive or violent and most of that aggression is self directed.  My child was and is mostly a sweet, fun loving kid who loves to watch comedy shows, make movies, and play MineCraft.

I need you to know that there are  still going to be many celebrations and accomplishments for you and your child.  Many of the same accomplishments all the parenting books talked about.  There are going to be moments of joy, love, pride, and at times your child will inspire you with their ability to overcome obstacles in their lives that would bring another to their knees.  You yourself will hopefully grow as a parent and find strength in yourself that you may have once believed impossible. I don’t believe there is any book that can truly prepare you for parenthood.  It is a long process of learning as you go, making some mistakes here and there and moving forward with unwavering determination and love for your child.

If I could have looked into the future and knew the life that was waiting for me was going to be so challenging, I personally wouldn’t have changed a thing.  In the end, my son has brought me more happiness, taught me more about myself and how to love than I could have ever imagined and for that, I am thankful every day.

You go on. You set one foot in front of the other, and if a thin voice cries out, somewhere behind you, you pretend not to hear it, and keep going.   ~Geraldine Brooks

The Anatomy of a Meltdown & How to Handle Them

Image

“There are some things I can’t control, & that’s just the way it is.”
~Susane Colasanti

When I was a kid  I used to watch a cartoon called Bugs Bunny and there was a character on there called the Tasmanian Devil. Many of you know the cartoon character I’m speaking of.  He was the ferocious, crazed, wild eyed, short tempered beast with little patience who had the ability to create a vortex with his own body.  He is often the character that comes to mind when my son is in the middle of a meltdown, only I don’t find my son’s actions to be as  amusing as  those of the cartoon character (at least not during a meltdown that is).

Meltdown… the word every parent with a special needs child fears.  It’s difficult to imagine anything more stressful, painful, frightening, confusing, or depressive as witnessing and helping your child through a meltdown. They can be triggered by something as paltry  as being told they cannot have a doughnut and can last anywhere from thirty minutes to six hours. Children experiencing a meltdown have little or no control over their actions.

Meltdown or Tantrum There is a difference between a meltdown and a tantrum. Tantrums are a pretty straightforward occurrence that happens when a child is not getting their way. Tantrums can be challenging and stressful as well, but there are some pretty distinguishing differences between a meltdown and a tantrum. 

The Tantrum:

  • When a child has a tantrum they will often look to see if anyone is paying attention and if they’re getting the reaction they seek from whoever their behavior is being displayed for.
  • Most times, (not always), the child having a tantrum is  careful to not obtain an injury during the middle of their fit.
  • A child who throws a tantrum will attempt to use the situation to his or her benefit (especially if your’re in a public setting).
  • As soon as your child gets his way during a tantrum, or realizes their antics just aren’t working, the tantrum will spontaneously resolve itself as quickly as it evolved.
  • Most  tantrums are your child’s way of exerting some form of control over you or the situation.  They can also be a way of punishing you for not not bending to their will.
  • Tantrums in children usually subside as they grow older or at the very least they happen less frequently.
  • In essence, tantrums are the ultimate form of manipulation for children and the desired outcome is to get their own way.

The Meltdown:

  • Children with Autism or mental illness couldn’t care less about whose looking during a meltdown, nor do they care if they’re garnering a positive or negative reaction from those around them.
  • Children in the midst of a meltdown do not consider whether or not harm or injury is going to come to them as a result of their extreme behavior.  Sometimes these meltdowns do result in injury to the child or those who are present during the meltdown.
  • Children having tantrums can usually be soothed and talked down, whereas a child having a meltdown cannot. I have found with my own child the more I try to calm him the more enraged he becomes.
  • When a child has a meltdown it is as though a switch has flipped in their brain.  They are no longer in control of themselves or their thoughts.  The child you know and love has temporarily disappeared and a violent out of control version is in their place.
  • Children having meltdowns do not care about the social circumstances.  They are not concerned about where they are or who is watching as the behavior cycles further and further out of control.
  • A meltdown usually occurs because the child feels a lack of control, an inability to verbalize their needs, overwhelming anxiety brought on by their surroundings, a perceived injustice, or much like the tantrum, an inability to get their own way.
  • Meltdowns can last upwards of six hours or more. I have had to take my son to the emergency room on numerous occasions because he couldn’t calm himself down and was becoming a danger to himself or others.
  • Meltdowns are NOT a form of manipulation, but instead an inability for the child to establish self-control under what they deem as stressful or (in my child’s case), frightening circumstances.

My son’s meltdowns can border on the extreme as do many other people’s children.  During a meltdown in the car one day my son tried to strangle me while I was driving on the freeway (one reason why he is no longer allowed to sit behind me when we travel anywhere). He has threatened his sister and myself with knives,  and once with a box cutter.  He has grabbed the steering wheel and tried to crash us into oncoming traffic. He has  threatened and tried to hurl himself from a moving vehicle. He has thrown and or tried to break anything not strapped down in our home.  He has kicked both myself and my husband. He has punched us, bitten us, screamed that we were hurting and or abusing him when we tried to restrain him for his own safety during a meltdown.  The latter resulted in the police being called by a neighbor thinking we were beating our son. Fortunately for us,  the police were well aware of our circumstances and knew we were not the evil abusers my son was making us out to be.  During meltdowns my son and other children can say some of the most belittling, hurtful, and hateful statements. I often say living with a child who has rages and meltdowns is comparative to living with an extremely abusive spouse.  The only difference is, you can get rid of the spouse, you can’t get rid of your child. nor would I want to in spite of the difficult position we are often in. He is my child and I love him without conditions.

So what can you do to keep your child, yourself, and others safe during meltdowns?  Below are some of the tools we use in our own home that have been given to us by in-home care staff or we read about.

  • First and foremost, try to remain calm.  I know that is so much easier said than done, but if you are as enraged as your child or take their behavior personally, it can only end badly.
  • If your child has meltdowns often and threatens you or others with knives, remove them or have them locked away.  We no longer keep sharp objects in or home or we keep the ones we need locked up. It isn’t just for your safety, but the safety of your child.
  • Try and prepare your child in advance for any changes in their schedule. Children with mental health concerns or who have Autism do best with a structured routine and anything that throws their schedule off can lead to a potential meltdown.
  • Create a safe space in your home where your child can go when having a meltdown. Stay close by to ensure that your child doesn’t hurt themselves. If you can’t get them to a safe room be sure wherever they are at, they won’t be able to endanger themselves or others.
  • If your child’s behavior is so out of control that they become a danger to themselves and others which causes you to call the police ask to have a CIT officer come to your home.  CIT  stands for Crisis Intervention Training and these officers are more likely to handle the situation responsibly and with compassion.  If you don’t have one of these officers in your area make sure the 911 operator knows your child has mental health challenges so the officer does as well.
  • Try and have a plan in place prior to meltdowns.
  • When your child is calm have he or she make a list of soothing options.  When you feel your child may be at the beginning of a meltdown try and have your child implement their soothing options before it becomes full blown. Once the meltdown spirals out of control soothing options no longer work.
  • Pick your battles.
  •  When your child is able to use soothing options and head off a meltdown be sure to acknowledge that with positive reinforcements.

Living with a child who can turn into the Tasmanian Devil on a dime,  can be challenging and stressful.  Make sure that while you’re taking care of your child you’re  also taking care of yourself.  Your health and well-being are just as important as your child’s.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” 
~Maya Angelou

Evolution of a Diagnosis

Image

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I’ve bought a big bat. I’m all ready you see. Now my troubles are going to have troubles with me!” 
Dr. Seuss

When I was a child I often saw the world, people, and places through rose colored glasses. Even though my childhood was a turbulent contradiction of my optimistic conception of how life and people actually operate in reality. It was those rose colored glasses that propelled me through life and gave me hope in my darkest hours.  They are the same fictitious glasses that help me rise each morning with the optimism that today is going to be  better day than it was yesterday. They are the same glasses that give me hope, (irrational as that may be considering the current circumstances), they give me hope that one day my child will have a life, a mind, that isn’t so undisciplined and tormented by thoughts he no longer controls.  They are the same glasses that prevent me from drowning in negativity and holding onto unjustified anger towards a child who has little control over his actions.  It is that childhood ideal that every individual has a story and reason as to way they behave the way they do that has kept me grounded. As a parent of a child with a severe mental illness, it is those rose colored glasses that hold together the very seams of my own sanity at times.  Without those glasses, that optimism, I don’t know if I could have ever made it this far.

When my family moved to San Jose, Ca. we all felt that perhaps this would be a chance for a fresh beginning.  Our lives in San Diego had been so tumultuous with Jordan’s behavior having escalated to a fever pitch on a daily basis while we lived there. Now though, Jordan was on a new medication that was helping to control his episodes, my husband had a new job, Jordan was starting in a great new program at a new school, and we had a new home that wasn’t drenched in negative energy.  We felt extremely hopeful about the changes in our situation and things went well for a short time.

My experience with Jordan’s prior school district in San Diego had taught me valuable lessons and inspired me to grow more of a backbone. Because of this, I was able to secure him a space in a classroom exclusively for  children with special needs.  There were two licensed therapists in the classroom and the teacher had a PH.D.  I felt Jordan was in qualified hands and perhaps I could finally start working again.  The staff in my son’s classroom was amazed at how well behaved my son was.  Truth be told, I was a little amazed myself.  In fact, Jordan was so well behaved that the staff started questioning whether or not he even needed to be in a special needs class or have an IEP.  The thing of it is that Jordan when presented with a new environment feels unsafe,  He works exceedingly hard to hide his challenges in fear that if he were to act out that some form of harm would come to him. When he comes back to an environment in which he feels safe he will unleash onto those he feels safest with.  Eventually Jordan felt secure in his surroundings  at school and the the staff never questioned me again.

Although Jordan was on a medication that helped control his moods and anxiety, we noticed that it was causing some very undesirable side effects.  He was on Risperdal and it was causing Jordan to have severe head and stomach aches. It also caused him to begin growing breasts, yes breasts, that really can happen. His new psychiatrist switched him to Abilify letting us know it was a safer medication and had fewer side effects.  The medication seemed to work and Jordan lost weight, lost the breasts, and stopped feeling sick all the time.  We noticed though that Jordan’s behavior was becoming increasingly violent and hostile.  We also noticed that he seemed to have an increasingly unrealistic thought pattern and some obsessive compulsive tendencies.  The classroom staff also began observing increasingly disturbing behavior, such as stalking and what they thought to be delusional behavior.  There was not a day that went by for almost two years that I was not called to the school.  Jordan went from being able to attend a full day to barely being able to attend half days.  I felt scared, lost, confused. I kept looking to the professionals for answers but no one seemed to have any.

School behavior was deteriorating rapidly and home life at the time was almost unbearable.  Jordan was having meltdowns almost every day.  I was having to take him to the emergency room at least twice a month when we couldn’t help him to calm down at home.  I was having to call the police to our home because he was threatening me with knives and threatening to kill himself.  One moment Jordan would be this loving, sweet, playful little boy and somehow he would get triggered by something so minuscule and it was like a switch in his brain just flipped. He became violent, incoherent, illogical, and brazen in his behavior.  At the time I had a huge professional support team. We had his therapist at school. an outside therapist, psychiatrist, a crisis team, and eventually a psychiatrist at Stanford. You’d think that with that much support someone would know what was happening with this little boy, but no one did.  They just kept attributing all his behaviors to Aspergers and anxiety and hoped that as he grew older he would grow out of most of the behaviors.

Eventually circumstances became so out of control and I felt I was losing my son.  I was afraid that he would hurt himself or someone else if we didn’t manage to get things under control and soon.  When Jordan turned ten we took him to Children’s Health Council in Palo Alto, Ca.  We paid an obscene amount of money to have him evaluated and this is when we were given the diagnoses of childhood onset schizophrenia.  After the initial shock wore off I hoped they could guide us in the right direction to get help.  Other than telling me that this wasn’t my fault and that it was a very rare condition they provided absolutely no guidance at all.

A few days after the diagnosis I met with Jordan’s doctor at Stanford.  She read the report by the Health Council but didn’t agree with their results.  She told me that a child with Autism can present the same types of symptoms and that just because Jordan has a vivid imagination it does not mean he should be labeled as schizophrenic.  I cannot begin to express the overwhelming joy and sense of relief I felt.  No parent wants  to hang the stigma of a severe mental illness over their child.  I felt that since his psychiatrist worked at Stanford she must know what she’s talking about.  Stanford is one of the most prestigious facilities in the country and only the best and the brightest are accepted there and if his doctor says it’s not schizophrenia, then hey, obviously the Children’s Council misdiagnosed him.  At least that is what I wanted to believe ever so desperately.  It’s what I needed to believe at the time because I couldn’t accept a diagnosis of schizophrenia.

Unfortunately, it was not a belief I could hold tight to for very long.  After three more years of revolving diagnoses my son was once again diagnosed with onset schizophrenia at the University of Colorado by a well respected psychiatrist whose specializes in childhood bipolar & schizophrenia.  I could no longer deny what was happening to my son.  I had to come to terms with his illness so that I could help him move forward and get him the best help possible.  We are now in the process of having my son meet with doctors at the National Institute of Health in Bethesda, Maryland.  We hope that after meeting with the highly esteemed doctors at their facility that we will have a better idea of how to proceed going forward with this diagnosis.

“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

Quote by Kay Redfield

“I long ago abandoned the notion of a life without storms, or a world without dry and killing seasons. Life is too complicated, too constantly changing, to be anything but what it is. And I am, by nature, too mercurial to be anything but deeply wary of the grave unnaturalness involved in any attempt to exert too much control over essentially uncontrollable forces. There will always be propelling, disturbing elements, and they will be there until, as Lowell put it, the watch is taken from the wrist. It is, at the end of the day, the individual moments of restlessness, of bleakness, of strong persuasions and maddened enthusiasms, that inform one’s life, change the nature and direction of one’s work, and give final meaning and color to one’s loves and friendships.” ~Kay Redfield Jamison

An Unquiet Mind: A Memoir of Moods and Madness

The Importance of Managing Stress

Image

“In times of stress, the best thing we can do for each other is to listen with our ears and our hearts and to be assured that our questions are just as important as our answers.” 
― Fred Rogers,

Parenting can be a challenging and stressful job under any circumstances, but parenting a special needs child can at times feel overwhelming.  Many times those of us raising these children can feel isolated and alone. Just going to the grocery store can be an exhausting task if you have a child who meltdowns as soon as they see something they want. It’s difficult to get together with friends and family, especially if you are caring for a child who triggers easily and their behaviors are unpredictable.  Some of us are dealing with children who are having daily meltdowns. Kicking, screaming, yelling, threatening, biting, and destroying property;  it can be unbelievable stressful and difficult to manage.

Somehow though we as parents have to find a way to manage that stress. We have to find a way to keep calm in the middle of a hurricane in the form of our child. Since we legally can’t duct tape them and lock them in a closet (so I’m told), we have to find other healthy outlets to keep ourselves sane.  Below are some useful ways to relieve stress that were given to me by our in-home support team. The first ones are ways I usually try to cope since strapping him to the bed and locking the door is NOT an option. Although at times I wish it were. Joking!

  • Yoga I find to be extremely beneficial to calming down.  I’m unable to go to a studio so I turned our spare room into a yoga/meditation room and I use an App on my Ipad called “Yoga Studio.”
  • Meditation is another tool I use to cope with daily stress. Even if I just sit for fifteen minutes a day in a quiet space it can make a difference.
  • Journaling is a fantastic way to express the feelings you may not be able to express out loud.  Sometimes I just want to scream and pull out my hair and getting those feelings into words on paper helps.
  • Music is what I listen to when I’m feeling overwhelmed by anxiety.  I just throw on my headphones and hide out on the back porch and take time to recuperate. It also helps to have just those few moments away from the chaos.
  • Healthy Eating Habits may sound silly but it makes such a difference.  Eating healthy helps you to have a clearer mind and improves your capacity to endure stress.  As does exercise and trying to get the proper rest at night. My son tends to be up late at night so I try and take cat naps while he’s at school.
  • Socialization I know is not an easy task when you have an out of control child as I do. The most interactions I have are usually online or with my son’s support teams. If you can though, get out, be with friends or family. Join a support group that meets in person or online. Having outside support can make such a difference when you have a child with chronic behavior problems.

These next couple of stress management tips are from a book called “The Explosive Child.” I haven’t read it yet but our in-home support team gave us a handout with these tips on them.

  • Learn to Control Your Anger:  Disobedient and explosive children all respond with renewed mischief when their parents lose control. The defiant child sees their parent’s loss of control of their anger as a victory for them, so their misbehavior continues. The explosive child needs a parent to model good ways to handle frustration rationally and calmly. You cannot train your child to tolerate frustration until you are calm enough to handle the frustration of having an explosive child.
  • Spend Special Time with Your Child: All children benefit from one-on-one attention from a loving parent. Much misbehavior stems from the child’s attempt to gain a parent’s attention. Explosive children cause so much frustration for their parents that the parent has to work to restore a calm atmosphere and supportive rapport that will allow the child to learn.  (I know this is NOT an easy task at times. There are days my child has been screaming at me for five days straight and all I want to do is hide from him. But it really is important so that your child still feels loved and cared for.)
  • Plan Lifestyle Changes: In order to manage stress, you must change your life. Changing your life involves effort and planning to make it work. You might try sitting down every Sunday and scheduling stress management activities and priorities into the following week.

I have found that if I’m in a negative state of mind, I’m not in a state of mind in which I can appropriately care for my child.  Taking care of yourself has to be one of your utmost priorities. I know there are times I feel as though I should be the one checking myself into a hospital, but then there would be no one to care for my son so I have to take care of me.

Here are some websites that I have found useful in the past and present:

HealthyPlace – http://www.healthyplace.com/

NAMI – http://www.nami.org/hometemplate_time.cfm?utm_expid=25982188-2.V0urNsnXTKSlbpq7I5TNnw.1&utm_referrer=https%3A%2F%2Fwww.google.com%2F

BringChangeToMind – http://www.bringchange2mind.org/

Autism Causes- http://www.autism-causes.com/the-meltdown.html

The Balanced Mind Foundation- http://www.thebalancedmind.org/?gclid=COfHyMruuroCFQhgMgodM3kARQ

Image