YAB GAB - ON THE BLOG

By Emily Ball Image of Emily holding diploma wearing a graduation cap & gown When I was in high school, I always aspired to go to college. However, my special ed math teacher suggested I set my sights on being a Wal*Mart greeter instead. Just because I had a bubbly personalit y and used a wheelchair, which was all I amounted to, I wanted to prove her wrong, so I di d. It made me feel embarrassed and I was shocked that an adult, esp ecially a special education teacher coul d say such a horrible statement to a dis abled student. Since being a panelist on many Youth Advisory Board panels over the years, I have had the ability to recount this story to various audiences, but their reaction always had a common thread of shock and horror.   After graduating high school, I was not ready to jump into the traditional courseload of college, so I reluctantly enrolled in Gateway Community College’s Step Forward transition program . Academically, it helped because I was ...

Picture of Maraya outdoors in rose colored flee c e As the school year comes to a close for many of us, I wanted to introduce myself, as well as reflect on how incredible this school year has been, and the many lessons it brought.   My name is Maraya, and I am the new Youth Engagement Coordinator at  CPAC. Being a youth myself, as well as having plenty of lived experience, I am deeply passionate about self-advocacy, youth voice, independence, and empowering others to develop pride in who they are.   Since working for CPAC, I have had some awesome conversations with the Youth Advisory Board (YAB) members, and am excited to see what new and exciting things we get into moving forward.   Aside from working at CPAC, I am also currently a student at a CT State Community College. That being said, I can’t help but reflect on all the insightful lessons and experiences this experience has brought my way. This school year has been one full of growth, lessons...

On Monday mornings, I would hop off my school bus, glowing with enthusiasm and sporting a massive smile, eager to greet any teacher who would listen to my weekend stories. I would approach them and say, "Wanna know something?" This was my catchphrase; in fact, I used it so often that my parents and my special education reading teacher jokingly threatened to buy matching t-shirts with my photo and the phrase on them. The topic didn't matter—whether it was about cave exploration or how the Vanderbilt kids spent their summers in Rhode Island—I had learned something, felt smart, and wanted to share it. Feeling smart was tough as a student with dyslexia. Frustration with reading, speech, and math came often. My parents were aware of this, so on weekends and holidays, we explored unfamiliar places, had new experiences, and learned through hands-on activities. I was like the sponges I saw at the Mystic Aquarium, soaking up nutrients to survive. In my case, those nutrients were ...

September is hydrocephalus awareness month. Hydrocephalus is a chronic, neurological condition that is caused by an abnormal accumulation of cerebrospinal fluid in the cavities (ventricles) of the brain. Cerebrospinal fluid is a clear liquid that protects the brain and spinal cord. Most children and adults who have hydrocephalus (like me) have a valve placed in their head called a shunt that drains the fluid directly into their abdomen or heart. Out of the twenty-six surgeries I have had, many were shunt malfunctions. My hydrocephalus was caused by a brain bleed I had at birth. I was born three months early. Another challenge was I had two shunt replacement surgeries within a short period before I began ninth grade. That was a very challenging because it made the start of my high school experience more difficult than others. Living with hydrocephalus is particularly challenging during certain weather conditions like rain or storms because I get awful headaches. Having a condition lik...

Suicide. A 3 syllable, 7 letter word that is not talked about. The moment it’s mentioned people turn the other cheek. They become uncomfortable and honestly believe it will cause suicide. Suicide isn’t a contagious word. It is a word that starts a conversation. A conversation that opens eyes to the reality of the pandemic of the final symptom of depression which is suicide. This word is preventable. This word deserves equality, love, and compassion just like any other symptoms of an illness. Over 12 years of my life I battled with this. I battled with endless hopelessness, a product of institutionalization in and out of psychiatric care watching the horrors of a broken system. The shame and stigma surrounding me led to barriers in my own healing, and setbacks that were life threatening. Suicide seen as attentioning-seeking, a choice, and selfish which is the very conversation used to talk about mental health. Those statements promote silence in the already internal battle that 1 in 3...

September is Hydrocephalus Awareness Month. Hydrocephalus is a neurological condition caused by an abnormal buildup of cerebrospinal fluid within the ventricles or brain cavities. It’s controlled by a device called a shunt that regulates the flow of the fluid. Hydrocephalus can be present at birth or acquired afterward. Both children and adults can have this condition. There are communities online where people with the condition and their families can connect and which can help families and individuals. Head injuries, intraventricular hemorrhage aka strokes, or brain tumors are some causes of the condition. Some symptoms of untreated hydrocephalus in children are headaches, blurred vision, and balance issues, as well as cognitive issues.   My connection with this condition is that I had a stroke at birth and a brain bleed that led to multiple disabilities, including hydrocephalus. As a small, premature infant, I had multiple surgeries until the neurosurgeons could finally get ...