Sabrina

I am a typical 17-year-old high school senior – diagnosed with Asperger’s Syndrome,

Muscular Dystrophy, Chronic Fatigue, and Anxiety Disorder. I receive behavioral therapy to help with

my autistic tendencies and social issues. I am a patient in the Neuromuscular Program at

The Children’s Hospital of Philadelphia where I participate in research projects for my Muscular

Dystrophy. Although my schoolwork is priority, and consumes most of my time, I volunteer at

The Ronald McDonald House Charities about 6 to 7 hours per week.

To attend The College of William and Mary, and pursue an undergraduate degree in

cognitive-behavioral psychology is my goal. Graduating from law school is my dream.

I am Sabrina Sumner, and I am a survivor. Not a “cancer survivor”, or a ‘reality TV show

Survivor”… but a “sister-of-a-severely-autistic-brother survivor”. My brother, Freddie, is now

21 years old, and is diagnosed with Down Syndrome and severe Autism Spectrum Disorder.

The “double-whammy”, as my mother calls it.

Freddie’s “specialty behaviors” are aggressions and disruptions.

In July, 2009, after waiting on a list for 3 ½ years, Freddie was finally admitted into

The Kennedy Krieger Institute, in Baltimore, Maryland. Kennedy Krieger has a world-renowned

Neurobehavioral Unit specializing in the most severe childhood behavioral disorders.

Freddie was admitted on the unit on July 27, 2009, with a predicted inpatient stay of 3 to 5 months.

We were discharged 16 months later.

My mother home-schooled me while we lived in a Ronald McDonald House near the hospital.

We went to the Neurobehavioral Unit for 8 hours every day. We physically trained with Freddie and his

behavioral team, wearing arm and leg protective pads.
We practiced for 16 months, while Freddie failed to respond to three, separate behavior plans.

On November 17, 2010, Freddie was discharged from the Neurobehavioral Unit as

“treatment-resistant”.

I have learned to cope with Freddie’s behaviors in many different ways. For the most part,

I try to keep my sense of humor as I manage each day, one meltdown at a time.

A brief look into my mind’s eye describes my thought process:

‘Freddie cannot be within an arms-length of another person at any time. If he manages to

escape and gets too close to someone, there will be a high-level aggression taken out on that

person. The Aggression-of-the-Day could range from a hair-pulling-to-the-ground, a slap in

the face, or even a full body-slam in instances where he just could not put on the brakes in time.

The “victim”, usually a female, is stunned after her surprise attack. The look in her face is

usually priceless.

“ROUND 2” features Freddie engaged in a full-blown, head-banging-on-the-ground

meltdown. The meltdown can be best described as a 2-year-old having a temper tantrum in a

21-year-old body. My mother feels mortified while trying to apologize and explain to the total

stranger our hopeless situation. She desperately hopes for a compassionate response, but rarely

gets one. In the meantime, my father is still trying to contain Freddie, and keep him and our

new-found audience safe.

Growing up as Freddie’s little sister, I often found myself on the receiving end of a lot of his

explosive behaviors. Most days are filled with tension, along with anxious parents,

never knowing when or what Freddie’s next move would be.
Being raised in this type of environment has certainly given me some odd tendencies, but I truly believe

that I am a stronger person in character and maturity. I feel that I am a more compassionate person, and

that I have a positive outlook on life’s situations.

I have always taken a personal interest in children with learning disabilities and special needs.

My desire to advocate for these children has become my main goal. I have personally

experienced what negative ramifications can occur within a family unit as a result of trying to

raise a child with behavioral issues. I want nothing more than to make legislative changes, so

that families raising children with severe behavioral disorders can receive the help and home

services they so desperately need.

I choose Behavioral Psychology as my undergraduate major because I feel that it will help

me better understand the science behind the disability. I cannot wait to begin to research the

behaviors that have defined my brother his entire life. I have always dreamed of becoming a

Special Education attorney. I want to change the laws so that other families do not have to endure the

stress and anxiety that my family still endures every day.

My brother, Freddie, has not only inspired me to change the world, but he has also helped

me find my future path in life. He has taught me that life is full of uncertainties, and that the

smallest of achievements bring about the biggest celebrations.

If I were to write my story on paper, it may appear that my life has been very sad and

troublesome. Though I must say that some situations were more challenging than others,

all in all, I feel that being Freddie’s sister has been a wonderful and rewarding experience.
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Sabrina