Jen's Voice, for her son, Dominic
My name is Jen. I am mother of 5 beautiful children and I am a forensic nurse. As a health care professional, I understand the importance of “a diagnosis.” Doctors use a diagnosis to help identify the nature of an illness, disease, injury or condition by examination of the signs and symptoms.
Differential diagnosis is the process of differentiating between two or more conditions that share similar signs or symptoms. Even nurses have a diagnosis system in which they use clinical judgment about the individual’s experience and/or response to actual or potential health problems.
ach kind of diagnosis has a direct impact on the course of care, tests that will be performed, assessments that will be completed and evaluated, treatment plans, and outcomes/goals for a patient. And, each kind of diagnosis is only as valid as the knowledge base and education of the clinician or professional that labels the patient with that diagnosis.
In the case of my son, I trusted the hundreds of professionals working with him and our family. I went to so many meetings with educated school professionals, counselors, doctors, and therapists. Each office had a diploma, or two, or five proudly displayed on the wall. They exude confidence, don’t they?
"I knew in my motherly gut, early on, that there was something wrong with my son."
I knew in my motherly gut, early on, that there was something wrong with my son. He didn’t learn like other kids and always seemed to struggle with emotional outbursts. He was more emotionally volatile than my four teenage daughters combined. He would “rage” from time to time when his frustration at school or home hit his limit. These "rage” events often involved screaming, crying and “choking out” the individual that was angering him. He had been suspended multiple times for assault on fellow students. I remember being called to school for a meeting when he was in 3rd grade. He had drawn a picture of cutting my head off with a knife. He disclosed that he had knives hidden all over the house and planned to kill me in my sleep. That lead to his first of many stays in acute psychiatric hospitals. The first diagnosis he received was “Mood Disorder - Not Otherwise Specified.” He was placed on antidepressant and antipsychotic medications and discharged for outpatient management.
"It was my son’s cry for help to protect his baby sister that started a cascade of events that would change our lives forever."
Fast forward five years... I was working a night shift and missed several phone calls from my husband’s phone. When I listened to the message that was left, it was my son’s whispering voice. I couldn’t hear what he was saying but I could tell there was terror. I called back. He said his dad was drunk. He had picked up the baby by her neck and beat her like a punching bag. It was my son’s cry for help to protect his baby sister that started a cascade of events that would change our lives forever.
In the car to the hospital, all five of my children started to spill out the details of the abuse they had experienced from their drunken father on night that I was at work. One described being picked up and thrown into a wall for playing too loudly and giggling. One described running away from him all through the house in terror as he chased her for not doing the dishes. She said she screamed over and over “don’t touch me, don’t touch me.” When I asked what she thought he was going to do, she replied that she had witnessed him pick my son up by the neck and hold him against the wall until he lost consciousness. And, that he had done that several times a month, for as long as she could remember.
We went to stay with my parents. He was arrested at 9 a.m. the next day in our back yard. He was heavily intoxicated. He spent less than 24 hours in jail and was charged with felony child abuse. It took two years for him to finally plead guilty to a lesser crime of misdemeanor domestic violence. He got one year probation, anger management classes, and drug/alcohol counseling.
Meanwhile, I lost my home. I couldn’t afford it on my income, without child support. I changed jobs twice. My credit was destroyed. I kept fighting to keep stability and some kind of normal existence for my kids.
My son didn’t cope well. He deteriorated quickly after his father’s arrest and break up of our family. He strangled a kid at school and was again admitted to acute psychiatric care. The drug screen they did came back positive. It was then my son disclosed that his father had been introducing a number of illegal substances.
My son spent the next four years in and out of every psychiatric facility in my city, as well as the juvenile detention center, for his violence and crimes. Each facility and care team provided a similar list of diagnoses with occasionally adding a new diagnosis with associating medication. Each care team was told about the history of strangulation to the point of unconsciousness. Not once did a clinician, doctor, or professional recommend a CT or MRI of his vessels and brain. All his symptoms lead to a litany of psychiatric diagnosis. Keep in mind that psychiatry is the only medical practice that prescribes medication without ever doing corresponding blood work, radiology studies, or confirmation tests to diagnose a patient.
"Psychiatry is the only medical practice that prescribes medication without ever doing corresponding blood work, radiology studies, or confirmation tests to diagnose a patient."
It wasn’t until February 17th, 2014, after I had attended more advanced strangulation training for my profession, that it started to set in. My son was referred to a pediatric neuropsychologist, and an MRI was ordered that revealed significant brain damage. In his report, the doctor provided the background and research for his medical opinion that validated that all my son’s symptoms were not from bipolar disorder, ADHD, or ODD, or schizoaffective disorder, etc. They were from repeated anoxic episodes that caused substantial brain damage from strangulation. Upon receiving the first correct diagnosis, the proper supports were put in place for my son. We finally knew it wasn’t that there was something wrong with him, there was something wrong that happened to him.
"We finally knew it wasn’t that there was something wrong with him, there was something wrong that happened to him."
My son was free. He was free from incorrect diagnosis and corresponding medications and care plans. He was free to start learning about his condition. He was free to start receiving the right kind of help for his diagnosis. With proper supports, accommodations, and understanding, my son’s grades improved, his behaviors stabilized, and his outbursts decreased. He got his first job and was made junior varsity captain of his high school basketball team.
Each kind of diagnosis has a direct impact on the course of care, tests that will be performed, assessments that will be completed and evaluated, treatment plans, and outcomes and goals for a patient. And, each kind of diagnosis is only as valid as the knowledge base and education of the clinician or professional that labels the patient with that diagnosis.
I am a nurse. I would have to diagnosis my son’s clinicians with the following nursing diagnosis: knowledge deficit related to inadequate education and training of the anatomy, physiology of strangulation and anoxic brain injury.
I have devoted my practice to training the first responding professionals: law enforcement, nurses, physicians, domestic violence advocates and prosecutors. I want to arm them with the knowledge they need to identify signs and symptoms of strangulation, choking, suffocation and evidence-based practice for medical management. If we can help just one survivor get a valid diagnosis and treatment, then our suffering was not in vain.