Mother’s Story: Emotional Stages Before and After Diagnosis

Posted by asiadmin - May 13th, 2016

mother-and-child-sculpture-1527087I had a well-mannered son who was handsome (and still is), a sharp dresser, smart, and driven. He was crawling at five months and walking at nine months old. He was reading by the time he was three years old. Eace was ready for kindergarten. In addition to reading, he knew his colors and numbers. He had good reasoning skills and by second grade he was writing his own books. In the back of a book, called The Turkey Trot, there was an Interests or About the Author section and he said he wanted to be a doctor. He liked swimming, skating, competitive games, riding a bike, playing basketball, and working with manipulatives such as Lego’s, building blocks, numbers, letters and puzzles. I concluded that he was on the right path.

Eace was in gifted and talented classes in elementary school. I understood the school-to-prison pipeline. Basically, prison projections correlate with third grade reading scores. My child was not at risk. In third grade he was at or above a third grade reading level. In high school, due to one specific role model, Eace aspired to go to college and become an architect. He was excited and responsible when he got his first, and only, car.

We were extremely close and he was exceptionally respectful to me and others. From my perspective there is nothing like the bond and relationship between a mother and her children. Eace had it all, including the girls. I often told him when he was in high school that he could be a model. Joy flowed in abundance and he possessed all the blessings that God had to offer him. That is why I became confused when his behavior and appearance changed drastically when he was around sixteen years old. As a mother I instinctively knew in my heart that something was not quite right, something was going terribly wrong. He was quickly deteriorating. He demanded that I stop calling him Eace. “My name is Maleke!”

Confusion

In middle school my son began to have trouble with his stomach and digestive system. Even then he gave me a hard time about taking his medication. As a junior in high school Eace aced the ACT, SAT, and state exams with no problem. During his senior year in high school, I took him to take a test to be a manager of a store. I noted that it was taking him an exceptionally long time to process the answers. When he didn’t pass, I was told that the test-taker had to score at or above a designated grade level. Now I was really confused.

In addition to cognitive, and health and wellness changes, I noticed behavioral changes. Eace began to walk differently, more like a Neanderthal. He began to slack off with his appearance. Small tasks like holding a fork, carrying a plate, and cooking became complex and overwhelming. His behavior became moody, compulsive, aggressive, and excessive. For instance, he would put twenty packets of sugar in a small cup of coffee. He would verbally attack me, my mother, and others who loved him. His moods, rude outbreaks, and low emotional intelligence were all baffling. His judgment and focus became blurred and all of a sudden, rather than an architect, he wanted to be a rapper. I knew that something devastating was transforming my son. What mysterious, foreign, frightening condition could this be?

During the early stages of his illness, I began to take him to doctors. However, the doctors did not discover anything wrong with him. I could not give up. I was desperate. I was a relentless mother in search of answers and solutions. Having worked as a results-driven, high-profile educator at the classroom, school, district and state levels, I was not ready to accept that I could help other people’s children but not my own child. Taking the example of a brain-injured person, I decided I could re- teach Eace basic independent living skills. I was confused but I knew that something was definitely wrong. Something had gone through my son’s brain and reasoning skills like a forest fire.

Eace was just as confused as I was. As though he needed reassurance, he started asking me if I was really his mother. He must have been hallucinating when he shared with me that the catfish and fries on his plate were warning him that the broccoli was poison and not to eat it.

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It’s Not Stigma, It’s Indifference

Posted by asiadmin - April 29th, 2016

shiny-brain-1150907Remember the age-old saying, “The only thing necessary for the triumph of evil is for good men to do nothing?” Doing nothing is indifference. Instead we must create a culture that cares. NAMI must lead the campaign against “doing nothing” and against indifference. We do this every time we speak about NAMI in places that have never heard what NAMI has to share. We are advocates for change, and against indifference, with every conversation we open, every meeting we attend, every class or presentation we offer, every time we declare our why to the world: why we exist, why we care, why we work tirelessly to make a difference in mental health. Our words matter, because—in reality—our why is everybody’s why.

I want us to work together toward growing a vibrant, articulate, broad-based constituency, the kind that ensures forward-thinking public policy, responsible public funding, and meaningful private philanthropy. Together we can push for robust medical research, important legislation, high visibility, and community commitment for change. We can be the leaders of those who stand to declare that addressing mental health and mental illness is truly the cause whose time has come.

NAMI’s voice matters to businesses and corporate America because mental illness each year costs more than $200 billion in lost productivity alone: days, weeks, months lost to mental illness— including the necessity for family caregiving. NAMI’s voice matters to schools and to the entire education enterprise. NAMI advocates for early observation, intervention, and treatment, especially since children with early onset have a 50 percent dropout rate, the highest of any disability group. NAMI’s voice matters to providers, at every level, because only through the voice, the face, and the credibility of lived experience can we hope to lift shame, fear, and isolation on one side and to promote treatment alliances on the other.

So what about stigma? The battle of stigma is not a battle we can win. Stigma is a bully, a nameless, faceless bully. It hides in dark places and strikes anytime, any way it wants, in a million disguises. Indifference is the real enemy that we can take down. Once we turn around indifference, we can end discrimination against mental illness. Even more importantly, we can end discrimination so often leveled against the people who endure these challenging issues. We know without a doubt that early identification, effective treatment, compassionate care and access to services can address these illnesses. To open these doors, we must turn our social and cultural indifferences and discrimination into new resolve: the same resolve and commitment that have changed the face of treatment, advanced research, and accelerated recovery possibilities in the case of cancer, diabetes and heart conditions.

NAMI must capture broad awareness and brand recognition on par with the American Cancer Society, the American Heart Association, and the American Diabetes Association. It’s NAMI’s time to claim its own spotlight as the leader in addressing the last (often forgotten and invisible) of these Big Four health issues. We must stand together, side by side, to promote research, prevention, education, treatment, and wellness for all our citizens. Our culture will be judged not merely by its will and capacity to address the obvious health and wellness issues, but by its humanity and civility in addressing mental illnesses and the toll these illnesses take in our lives, our families, our workplaces, and our communities.

Adrienne Kennedy, board of directors, NAMI

National trainer for NAMI Basics

State trainer for NAMI Signature Programs: Family-to-Family, Family Support Group, Parents and Teachers as Allies

(Honored as the recipient of NAMI’s 2013 Education Leadership Award)

Under Adrienne’s leadership as affiliate president (2011-2013), NAMI Austin was honored with NAMI’s 2013 Affiliate of the Year Award.

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