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In Their Own Words – Life is Weird

October 15, 2010 27 comments

This “In Their Own Words” is by Mallory Johnston, who has an older brother with autism. She graduated from Tennessee Technological University in May 2010 with a degree in mechanical engineering and two minors, biology and chemistry. Mallory now works full-time with NASA-Marshall Space Flight Center in Huntsville, AL and has applied for medical school for the 2011 year.

I entered college with about 8 months of very limited driving experience.  I was 18 when I earned my license. My mother wouldn’t let me drive, and I didn’t push the subject. We had bigger things going on when I turned 15. Not long after moving to Bethpage, Tennessee, my brother got sick.  My brother was born about three months premature. Some people hear this and think “Oh, that is terrible. I’m sorry to hear that.” I’m not. My brother was born three months premature with hydrocephalus. Basically spinal fluid doesn’t drain properly, and excess spinal fluid from the brain isn’t removed.  Typically if a baby is born with hydrocephalus after a nine month gestation period, the baby is either a stillborn or in a vegetative state.  Severe mental disabilities begin to develop around six months of gestation.  Once again, Clay was three months premature. Who’s to say what is good and what is bad?

Twice a year we would make the three and a half hour drive to LeBonheur Children’s Hospital in Memphis, Tennessee. CT scans were performed on “Mr. Joseph Johnston, please follow me” a couple of times a year. Because a neurological condition wasn’t enough, he also has cerebral palsy on his right side, and when he was in the first grade, he had to have his Achilles tendon severed. He spent 3 years in casts and a leg brace.  I remember doctor after doctor asking “what type of special school does Clay attend?” “None. He goes to public school,” my mother would be quick to respond. My parents never once let Clay think he wasn’t capable of anything. No matter how much time he needed, no matter how much attention he needed, neither one ever doubted him of any ability. He didn’t have disabilities; he had “different abilities”.  And when he graduated from high school with an Honors diploma, my mother cried.   My brother cried when he was told he was going to have to have neurosurgery. With a strip of dark brown hair shaved off his head and a tube coming out of his skull, we all could have cried but couldn’t.

We all thought we were in the clear. We were told that there was a “good chance” Clay would need surgery after a major growth spurt, to replace his shunt and/or the tubing that drained the excess fluid to the abdominal cavity. When he was sixteen, he threw up on his desk in Mr. Vincent’s algebra class. What should have been a routine procedure turned into three years of Percocet and Lortab; waiting room chairs turned into single person couches. On my fifteenth birthday, my brother had brain surgery.  On his seventeenth birthday, he had brain surgery.  On Easter, near Christmas, in the middle of the summer—my brother had brain surgery. If he wasn’t in the hospital, most of the time he spent on the couch with a cold cloth on his head covering his eyes. I’d get off the bus, come through the door, and when I saw that all the lights were off, I knew what that meant: Clay had another headache.  The I-can-only-imagine-to-be-the-worst-headache-ever pain would build and build. Then he would vomit until he was dry heaving, sometimes for hours.  One There were so many surgeries and nothing seemed to work. What a quality of life- taking medicine that makes you sleep 20 hours of the day, and when you’re awake for the other four you’re either too drowsy or in too much pain to do anything.  A simple, routine procedure for a condition that affects one in every 500 live births lasted three years. We all discovered that some things were more important than splitting up Christmas ornaments or getting a learner’s permit. My mother never left the hospital when Clay was admitted. My father and step-father alternated who picked me up from school every day, followed by an hour drive to Nashville to visit at the hospital. My two dads—what can I say? After her husband, my father may be my mother’s best friend.  Clay hasn’t had to have surgery since late 2002, but we all hold our breath when he says his head hurts.

After graduating from high school in 2003, Clay had been taking some classes at the local community college. My brother couldn’t drive or tie his shoes or a number of things.  He, however, was very bright with dates and facts.  My mother was constantly at the school reminding teachers and administrators of the Americans with Disabilities Act.  Due to Clay’s cerebral palsy, his motor skills were hindered. This greatly affected his hand writing and his typing speed. Even after being told before school started about this, some teachers still found it to be their right to make public comments to the class about how they “couldn’t read Clay’s writing” and “can’t you just” write better.  My brother’s accommodations were time and a half on tests.  That’s all. He was legally blind without glasses, had hydrocephalus, cerebral palsy, and spent time in a leg brace.  All he wanted was time and a half on tests so he could type out the answers on a computer to make the teacher’s job easier.  About two weeks before finals week for the fall 2005 term, the college sent a letter saying his accommodations were being taken away. How convenient that it fell right before finals week.   During one of the many visits, the President of the school actually had the nerve to say to my mother “If Momma wants to go to college, why don’t Momma sign up for classes.”  She signed up for something.

At the beginning of the spring 2006 semester, my mother set up for Clay to have an extensive neuropsychological examination that would encompass two days and about 24 hours. She was going to have documentation that Clay needed accommodations, and she was going to get every single one she could for him.  Her plan was to get vengeance.  Clay was reluctant and unwilling. He eventually went inside. After about fifteen minutes the lady came out and said to my mother “I am very surprised at how well he has done considering how autistic your son is.” She said it positively.  “Wait. What? My son is what?”  I have known all my life that Clay was “different,” and more than likely Clay would need someone to live with him or at least very near him for his entire life.  But there was always hope he would “catch up”.  That single word, that diagnosis, caused abstract ideas to plummet and become real and concrete.  How could nationally recognized neurologist miss this? How could doctor after doctor never notice how he avoids eye contact, slaps his left hand into his right hand repeatedly, and just parrots what you want him to say when asked a question?  Why couldn’t his family that lived with him not recognize sooner that his destructive behavior wasn’t him “lacking discipline”? His actions were less his choices and more his reactions from the world as he perceived it.  How were we supposed to know that he didn’t see the world like the rest of us?

The diagnosis of Autism has helped all of us especially my mother.  For many years I believe she wondered “What am I doing wrong? Have I failed as a mother?”  Clay’s behavior would become more than disruptive to the point of violent over things such as a change of dinner plans. These “episodes” would almost always be followed with him bursting into tears. It is difficult to say if finding out sooner about his condition would have been better for all of us or not.  Because my parents refused to let Clay fall into the “special needs” category, he excelled further than average concerning academics.  My mother dived head first into books about autistic adults, books written by adults with Asperger’s, and books written by parents of autistic children. She read articles and watched videos.  Many of these she passed on to me.  We soon discovered that we couldn’t change his behavior, but we could only modify ours.  And on my brother’s 22nd birthday, my mother quit smoking.  “I have to live forever for him…”  We laughed because sometimes that’s all we really can do.

I remember being protective of my older brother when we were in elementary school.  If anyone picked on him, I took care of them. I have always been preparing to take care of my older brother. To be a starving artist who travels just snapping photos and writing journal entries hoping to be published sounds so incredibly desirable to me. To make mistakes, to be selfish, to run without a direction telling myself “I’ll figure it out later” are things I have tried my best to avoid.  I chose engineering because it is a stable field. It is a challenge, but it isn’t a risk. Everyone will have their responsibilities; some just embrace their responsibilities sooner than others.

When I was offered an engineering co-op position with NASA Marshall Space Flight Center in the spring of 2007, I never thought in a million years I would actually work for NASA. Who does that?! The co-op experience has been amazing.  I have seen two space shuttle main engine (SSME) tests.  I have watched one of the last night-time shuttle launches ever.  I have talked with astronauts over appetizers and drinks. I get to tell people “I work for NASA”.  Sitting on my book case is an autographed picture signed “Dream big” by STS-118 Pilot Charles O. Hobaugh.

When I tell people what I want to do, they say I’m crazy.  “Well, I’m hoping to go to medical school for Fall 2011, become an astronaut, write an award winning book, and then work on becoming President…” But I’d rather be the “crazy one” aiming for the moon than the person who has grown satisfied. I only partially understand the hard work and sacrifice a woman with her GED  performed to raise a gifted daughter and challenged son. I have witnessed my brother’s struggle with beginner’s algebra and putting on shoes with laces or pants that have a zipper. I am the age my aunt was when we believe she contracted HIV/AIDS from her husband.  I would rather be the “crazy one” to everyone else, so that I can be someone who didn’t waste her talents and the sacrifices of others.

Some could say I am pursuing medical school “a little late in the game” and that I am not approaching this in an orthodox manner.  I didn’t enter college as a pre-health major knowing “I want to be a doctor”. I didn’t start moving down a list someone said was the standard way of doing things to get into medical school. I am attempting to make my path because of a passion I have always felt.  My diploma says I graduated “cum laude” (with honors),  something I didn’t think was possible even a year ago.  I’m still not sure if I have expressed how much I want this. From the many things I have observed in my life and the many things I have accomplished, there is no doubt in my mind given the chance and the preparation that I can become an amazing medical student.

I chose engineering because it is a stable field. It isn’t a risk. Applying to medical school, that’s a risk. My life has been anything but standard. It has been a rollercoaster. It has been a movie. It has been drizzled with sweet moments and sprinkled with sour flashes.  Just as Clay continues to work towards his bachelor’s degree, I am working towards being more myself. Whether I continue to work for NASA or become a doctor or an astronaut or an award winning writer, my life will continue to be my life— peculiar and complete.

“Life is weird.”

Life is what you make it.  Dream big.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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