RaisingJordan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Author: angeliamarie44

This blog was created to share our experiences and the impact of mental illness and Autism. I believe in the importance of erasing the stigma of mental illness and for that to happen, families such as mine need to speak out, advocate, and provide the real story of what we endure daily. That includes, the struggles and the successes of our daily life and interactions with the health care system, schools, police, and society in general. Mental illness, just like cancer, diabetes, or even the flu is a medical illness and it's past time that we treat it as such. I feel our societies failure to provide treatment and support services for mentally ill individuals and denying hospital care to the mentally ill is setting a separate and unequal standard in our country that the mentally ill are somehow less deserving of medical care and being treated with the same dignity and quality care that any other person facing a medical crisis has the right too. They too have a right to a successful life free from pain and without proper care and understanding their illness could have life threatening consequences. As a mother with a child who has struggled for years with mental illness and Autism, I feel it is my path in life to raise awareness so that we might create the much needed change in this country and end the discrimination facing the millions of mentally ill. "Mental illness is an equal-opportunity illness. Every one of us is impacted by mental illness. One in five adults are dealing with this illness, and many are not seeking help because the stigma prevents that." ~Margaret Larson

16 thoughts on “A Rising Crisis in our Nation, A Call To Action & A Mother’s Perspective

  1. Reblogged this on Marci, Mental Health, & More and commented:
    A good read, this happens all to often!

  2. I feel for you and your son, and it pains me that you didn’t get the support and understanding you needed from those sheriff’s on that day of crisis.
    Education is the key to understanding, the more people who tell their stories the more likely those in power will listen and change the way mental illness is viewed and dealt with.
    Thank you for your courage to speak out.

    • Your right, education and continuous training is key to responding effectively on a crisis call involving someone with a mental health disorder. I felt that speaking out was important because of the fact that there was a CIT deputy involved in the crisis at our home and he was one of the deputies disputing my son’s diagnosis. I felt it was just such dangerous territory for him to wade into with the limited training he has, as well as not being in a position to make those judgments.

      I also saw first hand how quickly a situation could escalate out of control and an individual could become seriously injured or worse. Law enforcement are trained to issue commands and that just does not work with someone who is having a mental health crisis. That’s why continued training and education is so critical for every law enforcement officer, in my opinion.

      Thank you for reading this post and for your encouragement.

  3. We went through something about a month ago during one of my son’s rages. When I called 911, after explaining about my son’s bipolar disorder, I asked for a CIT officer and was told “we will send a regular deputy and they will determine if there is a crisis”. They then ended up sending officers that were so ineffective I was ready to scream. By the time they got there I had gotten my son calmed down to the point where he was sitting on the sofa. They pretty much told him to apologize to me and if he gets angry in the future, go outside and hit a tree instead of attacking me.
    This wasn’t our first issue with local officers and like you, I only call as a last resort. It is getting harder to trust people of ‘authority’ in this world of mental illness that we live in.

    • I am so sorry that you and your family had that experience. Have you spoken with someone from your local NAMI? After the incident at our home with law enforcement, I made some phone calls to find out who could help us in starting a conversation with our local sheriff’s department. NAMI was first to come to our aid and set up a meeting with myself and the officer’s commanders. When they pressed charges against my son, NAMI also facilitated a meeting with the juvenile justice and had the charges dropped. NAMI has been an exceptional area of support for us during this difficult time. I’m currently continuing to work with our local NAMI in finding ways in which to aide law enforcement, so they respond to each and every crisis call effectively and that all officers have CIT training, not just a select few. I would encourage you to call your local NAMI, if you haven’t already. Tell them your story and how you feel uncomfortable calling law enforcement during a crisis, let them know your concerns, they may be able to help you and your family. Sadly, law enforcement are usually the first responders to a mental health crisis and a high percentage of those officers are ill-equipped to respond to a crisis involving someone who is mentally ill or autistic. If your local NAMI can’t help you, let me know and I can talk to ours and hopefully find some way they can help.

      • Yes, I am actually involved with our local NAMI group. For us, they also have been a wonderful resource. My husband and I are in the process to set up training to be support group facilitators. Luckily our county, as a whole, is working hard at creating programs for adult mentally ill patients rather than put them in jail. They still have a long way to go when it comes to the kiddos. It is hard when you have an ‘in between’ kid, like I have. He is not doing stuff that is bad enough to necessitate residential care, but he has moments that are so hard to control.

      • NAMI is such a wonderful resource for those living with mental illness and those caring for someone with a mental illness. I think it’s wonderful that you and your husband are so involved, speaking out, making changes, and helping others in crisis. I agree with you that we have a long way to go in helping children with mental illness in this country. Speaking out and working with local organizations though is a good start. My family lives in a state that does not believe in residential treatment and only has 16 hospital beds for children and it is almost impossible to get them in the hospital unless they are having a psychotic break. I completely relate to what you’re going through with your son, we often face the same challenge and why we’re looking into moving to the East Coast.

      • It’s tricky. We lived in CT and NY. It was always a struggle to get my son the help he needed in either place. It wasn’t until we moved to GA that we actually found help. Not only doctors and therapists that help, but hospital care, as well. It is still far from perfect, as many of the states have closed mental health facilities, but it is the best we have found thus far.

  4. Really great article, and very emotional too. I’m so sorry that you’ve had such a difficult time dealing with the authorities. My cousin has Asperger’s and he too would have incredibly violent tantrums that were difficult to control, which I remember well from my childhood – he’s only a year younger than me. I know that my aunt found a herbal supplement that massively calmed him down but I can’t remember what it was (I can ask, if you like?). She was told that she was a terrible mother and hadn’t brought her child up properly – he was 7 before he was correctly diagnosed. This was 20 years ago, so I know things have changed with greater awareness, but it’s very sad to hear about your difficulties with law enforcement in this day and age. I hope things get better!

    • I would be interested in knowing what your aunt used, thank you. I too have used herbal supplements for my son, but some of those made him have the same adverse reactions as Prozac and other similar medications. Working to train all law enforcement on how to respond effectively to mental health crisis calls is going to be challenging, but it is so important for not just the individual having a crisis and in keeping them safe, but in keeping law enforcement safe as well. I believe these agencies who are the first responders to mental health crisis calls must be more open to working with local mental health organizations so they have the tools and access to continued training and education. Continued training can help to save lives and build a better rapport between law enforcement and the community in general.

  5. Mood disorders such as depression are the third most common cause of hospitalization in the U.S. for both youth and adults ages 18 to 44, yet nationwide there are only 10.8 beds per 1,000 adults with serious mental illness.
    http://www.nami.org/Content/NavigationMenu/Grading_the_States_2009/Findings/NAMI_GTS09_Findings.pdf
    http://www.nami.org/factsheets/mentalillness_factsheet.pdf

  6. We can all learn from you and your experiences. You have taken a terrible experience and making certain it will never happen again through education. It was a true pleasure and honor meeting you at NIH early this year.

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