Her Illness Does Not Define Her
I recently noticed on our daughter’s IEP that her primary disability is listed as an Emotional/Behavior Disorder. In addition, diagnosis listed is Anxiety and Post-Traumatic Stress Disorder.
My response…
It is my understanding that when our daughter has a panic attack her body goes into an irrational state of fight-or-flight or an automatic response to protect the body. The brainstem and diencephalon jump into overdrive or areas of the brain responsible for body temperature, heart rate, blood pressure, sleep and appetite/satiety. With all resources focused on protecting the body, the Limbic and Neocortex areas of our daughter’s brain go offline - areas of the brain, mind you, that do not fully mature until our 20s. These areas of the brain are responsible for emotional reactivity, attachment, affiliation, concreate thought and abstract thought. Therefore, any and all emotions and behaviors witnessed are a result of or manifestation of a state of panic. Behaviors those in a state of panic cannot always control or are even sometimes aware of.
I am not a clinical expert, but I am a mom living every day with a daughter that braves a mental illness. It is my “professional opinion” (in the most important profession I have - as her mom), that we revise her IEP to read as follows…
Her 8/9/21 Mayo Diagnosis is Panic Disorder Episodic Paroxysmal Anxiety. PTSD and Separation Anxiety are a result of hospitalization at the onset of her disorder. She is not avoiding activities in all cases – she is avoiding activities that elevate her anxiety in an effort to manage her panic.
Primary disability should be listed as: Panic Disorder – behaviors witnessed are coping mechanisms or a state of fight-or-flight. I am concerned with disability listed as simply Emotional/Behavior Disorder. This sounds very different to me than a child who braves a severe panic disorder and behaviors that are a result of a state of panic.
I am concerned with how Externalizing Problems is listed. Some of these behaviors are not accurate and a manifestation of her panic or state of fight-or-flight. I want to be very clear that these behaviors are not our daughter’s typical nature - they do not define her.
Educational Needs: Less about depression – more about supporting/coping with panic. Our daughter is not typically depressed or ashamed - she most typically and only feels this way when it is indicated she should feel this way.
Please revised her Consequence Intervention…
Left alone in a quiet setting is not always productive. We have found distractions, change in body temp, movement, music and healthy snack are most calming. Anything clinical, lonely or threatening will elevate our daughter’s panic.
I want to assure my husband and I have an opportunity to intervene before the Crisis Hotline or Police are engaged. These interventions are extremely threatening for someone in a state of panic. Those in a state of panic require familiar faces/smells/actions, comfort, love and people they trust.
In summary, I want to assure our daughter’s IEP clearly captures she has a severe panic disorder or illness. Behaviors are a result of her illness. Our daughter is not a child with behavior issues. Our daughter’s behaviors that are a manifestation of her panic disorder do not define her. She is not a mentally ill child, but instead a child that courageously lives with mental illness. This small but significant difference is the change that will be the catalyst for a different future…for our daughter…and for so many others.
