Destiny’s Journey

By Cindy Pahr, M.Ed., CBIST

In 2016, when she was 11 years old, Destiny suffered an AVM (Arteriovenous malformation) rupture and ICH (Intracerebral Hemorrhage). Destiny’s pre-stroke school functioning was average. She was very athletic and very social. The impact from her incident and resulting behaviors were so significant that she could not attend a typical school. The sequelae resulting from her incident included significant speech/language deficits, cognitive and behavior impairments. Most impacting to her family and school participation were Destiny’s behaviors which included inappropriate expression of sexuality, misinterpreting social cues, agreeing to peer requests without understanding the safety and appropriateness of the request, impulsivity, touching other students, task avoidance, and difficulty changing tasks. Her deficits affected her siblings, family dynamics, and extended family who had to step in to assist caring for Destiny for this two-parent working family. 

Navigating the school system and managing the changes in their daughter were overwhelming. Destiny’s parents had serious concerns for her safety, ability to progress with learning, changed social life, and social emotional needs. Post-discharge from the hospital, Destiny fortunately has had the support of professionals with background in brain injury and those with ACBIS certification. Her mother asserts that brain injury knowledge is the most vital component to her daughter getting proper supports in school. She affirms that only a “handful of people get Destiny and without brain injury experience, providers don’t know what they are dealing with.” It is evident to her that when staff do not have this knowledge, they do not understand Destiny. This results in addressing her needs in a way that often exacerbates her behaviors and limit her access to academic growth.

Five years post-injury, Destiny is now a 16-year-old student in 11th grade. She continues to require close supervision due to lack of judgement. Destiny is vulnerable to peer pressure and will be persuaded to engage in activities against school rules or engage in sexual interactions with students. Recently, she took scissors to her hair (a behavior she did early on after her injury) when she was frustrated with an interaction with her teacher. Memory issues and the ability to read social situations hinder her ability to recall the facts of situations making her even more vulnerable. 

Destiny’s mother is fearful of her daughter’s future and the lack of brain injury knowledge in the community. Destiny’s behavior is unpredictable, so she needs close supervision. She finds some staff get angry about things out of Destiny’s control. She comments, “In a perfect world, people would understand disability overall. Even in 2022, though we have come a long way, there is still a vast level of ignorance when it comes to individuals with disabilities-to know the life they are going to live. I fear for her future. People don’t realize what families are going through. I want more education to lobby and advocate for this missed group of survivors. Insurance companies don’t understand, so we can’t get certain services. Many [insurance companies] recognize autism so they qualify for more support. They [children with autism] can have all the same symptoms and deficits but because she doesn’t have ‘Autism’ diagnosis, she doesn’t qualify.”  

Due to the lack of resources and likelihood of a misinterpretation of her needs, Destiny will live with her parents once finishing high school because her parents are afraid of a world without knowledge of brain injury. She hopes in time the door of resources for individuals with brain injury will open.