Home > In Their Own Words > In Their Own Words – Life is Weird

In Their Own Words – Life is Weird

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.

  1. Alexa Puckett
    October 15, 2010 at 9:53 am

    This blog brought tears to my eyes. What an uplifting story. Thank you for sharing it.

    • Nancy Gentes
      October 15, 2010 at 12:12 pm

      What a wonderful story; I am not sure who was more amazing – Clay, his mother or brother. A great family.

  2. October 15, 2010 at 12:03 pm

    Ms. M. Johnston, TY 4 Sharing such a wonderful account of Ur family! As I usually do, I started reading the body of the text w/ out reading about the author. Didn’t take me long 2 realize U, the writer, were a quite intelligent young lady! U & Ur brother were certainly blessed 2 B born in2 Ur family!! I want 2 congratulate U on Cing (& admitting) U R gifted, & even w/ all Ur family responsibilities U contine 2 reach 4 the star in U!!! I wasn’t even surprised when I got 2 the end where U spoke of Urself, Bcuz of how well U wrote the rest!!!! THEN, of course, I couldn’t resist looking at the top “About the author”… My best 2 U & Ur entire family… Keep on “keeping on”; always look up, but keep Ur feet on the groung running… STAY SAFE!!!!!

  3. Nancy Gentes
    October 15, 2010 at 12:14 pm

    Please note – comment I submitted before had an error in it – it should say sister, not brother, here is the corrected version:

    What a wonderful story; I am not sure who was more amazing – Clay, his mother or sister. A great family.

  4. Fanfan Rwanyindo
    October 15, 2010 at 2:56 pm

    This story really uplifted me. What a very courageous and united family! I’m so proud of Clay…I’m a mother of 2 boys, 5 years and half autistic and 3 years boy with Down Syndrom + heart’s disease but when I read how your family made all their efforts to improve Clay’life and education, it encourages me to continue to believe in my kids and make their life better. Thank you God for this wonderful family. Be blessed!

  5. Yolanda
    October 15, 2010 at 4:08 pm

    What an inspiring and touching account of a marvelous family. Ms Johnston is an intelligent and gifted person – in so many ways. Your brother, mother, father and step-father are all lucky to have you in their lives. Blessings to you and your family.

  6. Mallory Johnston
    October 15, 2010 at 4:08 pm

    All of your words are so incredibly kind. If my parents (father, mother, step-father) read these comments, they’re going to cry. Thank you again for the kind words. I am just glad to have a chance to tell my piece of a story and inspire people.

  7. Larry L.
    October 15, 2010 at 4:43 pm

    Truly a story of inspiration! Thank you for sharing!

  8. Lynn T.
    October 15, 2010 at 5:25 pm

    To Fanfan Rwanyindo:
    Do continue to believe in your kids! Our children are no less amazing than a “typical” child, and we (the parents) know how capable they truly are! We must stay strong and continue moving forward!
    (I have a 7 year old and 3 year old (boys). My oldest has a diagnosis of “autistic-like”).

  9. sandra
    October 15, 2010 at 9:51 pm

    Hello and thank you for sharing your story. I am a doctor, and I have a son with autism. My pursuit of a medical carrer was not started nor completed in the convential way. I don’t know if personnal essays are necessary for entering Med School (as they were in the past),if so, this one would certainly be a winner. Be certain that your experiences as Clays sister and your mothers daughter will make you not only a better physician, but more importantly, a better person. Thank you and God Bless you and your family

  10. October 16, 2010 at 8:18 am

    Thank you for sharing, Mallory. It is refreshing to hear the story of a compassionate sibling of an Autistic brother. I too have a daughter and son who are caring and compassionate to their sister (my oldest daughter with Autism). Life is “weird”, and we need to support one another with our encouraging stories. Thank you to your Mother too. She is a courageous, supportive, and optimsitic woman. God bless you, Clay, and your family.

  11. October 16, 2010 at 8:54 am

    This may be a bit off topic but toileting issues affect many kids and families. We have a 4 year old son with autism and a 2 year old with ADHD. Both boys are not potty trained. They both have a tendency to disrobe and worse yet they get into their diapers and play in it! We invented an escape proof sleeper that zips in the back and keeps them out of their diaper. http://www.ikidsfashion.com Thanks a lot!

  12. matt3046
    October 16, 2010 at 9:03 am

    Thanks Mal..

  13. Noreen
    October 17, 2010 at 6:36 am

    Mallory – Life’s challenges and sacrifices change people and shape their lives. This essay is a brilliant example. You will be a terrific doctor if this is truly your passion. I especially liked your candidness about your aunts condition, as people suffer in silence and the suffering is all around us. We all have our struggles and those fortunate, see they are everyday. You have a terrific role model with a joking but struggling heart. Yes, Laughter/comedy of life is very important and should never be underestimated. Live, laugh and #1 LOVE! Good luck in all your endeavors and let your love shine through in all you do.*Peace*

  14. Melissa Cruz-Skaggs
    October 17, 2010 at 6:35 pm

    Bravo on your accomplishments! You are an inspiration to Clay and the two of you are examples to everyone that no matter what your dispositon is you really can be truly great! Your mom did well!

  15. Stanton Lewis
    October 20, 2010 at 10:35 am

    Mallory,

    Thank you for sharing. Having a kid on the spectrum in the family does tend to give you a different perspective on life than those who come from a “typical” family. I am glad to hear that you are pursuing your own goals while still maintaining your connection to your family. From your story, I feel confident that you will excell at whatever you set you mind to do. Autism is not something that needs to be fixed, but rather, it can be the start of understanding and seeing the world of unique abilities that God has given us all. Best wishes to you on your Medical School acceptance and future endeavors.

  16. Mary Kirk
    October 20, 2010 at 11:54 am

    Mallory,
    As a mother of a 16 year old with Asperger’s Syndrome, your encouraging story was
    truly meaningful for me.

  17. Stacie R
    October 27, 2010 at 12:03 pm

    Wonderfully written Mallory. We have a 5-year old with ASD who has an 10-year old neuro-typical brother…through our younger son’s disability, (as odd as this sounds) our older son has been enriched more on a personal level than many will learn in a lifetime–living compassion, tolerance, and patience. Daily I see how this has imprinted and inspired our older son through his maturity, words, and actions. I do understand it can be a challenging and scary and frustrating role and we appreciate that in our family and carve out time to spend with each child independently–but I believe the overall perspective the neuro-typical sibling comes away with can be a blessing and thus result in a more intrinsically fruitful life. In many cases siblings of those with ASD (or other disabilities) pursue “people-care” or “compassion-driven” careers, much like your transition to the medical field–where I am certain you will positively impact many, many lives well into the future. God bless and best wishes to you and your family!

  18. Mallory Johnston
    October 27, 2010 at 8:02 pm

    It has been wonderful reading all the comments. I hope to make my life an inspiration. We are all the result of other people’s choices and circumstances we never had control over. We do have the choice of how we let experiences teach us. “What doesn’t kill you… makes you who you are.”

  19. Connie
    November 10, 2010 at 10:57 am

    As an educator of children who have special learning needs/differences and a first-hand witness to the routine denial of accommodations by SOME “professionals” with whom I have had to work, the account of Clay’s treatment saddens and sickens me. I applaud Clay’s mother who advocated for her son and wish, so much, that all children could have a champion like her. Thank you, Ms Johnson, for sharing and good luck with your future – you are a very bright light!!! ~connieb.

  20. Michelle Bellew
    January 1, 2011 at 11:53 am

    This is an amazing account of your life. I have a 4 year old nephew with autism. It is my desire to do everything in my power to help him excel in every way. Your story is an inspiration to me. We even have family members who don’t seem to want to understand him. I believe that children can be whatever their heart desires no matter what disability they may have. I wish you the very best in becoming what you want to be also. I think you will make a great doctor!

  21. angie
    January 8, 2011 at 10:45 pm

    I feel like this could be my daughter’s story someday! I am the mother of a 9 year old boy with autism, and I feel like a fighter/advocate when it comes to my son and school! I am also the mother of a 6 year old daughter who is the smartest little girl ever. I hope she dreams big. I am doing my best to prepare my son for the world so she won’t have to take care of him. Thank you so much for sharing and may you be whatever you want to be!

  22. Tracey Duncan
    March 29, 2011 at 11:52 am

    All I can say is wow! You and your family are amazing. My 12 yr old daughter has Crohn’s disease, and I sometimes find myself whining the “Why me’s?” Thanks for putting things in perspective! Best wishes in accomplishing whatever goals you set for yourself! Thanks for sharing this blog! Tracey Duncan, TTU Alumni Director

  23. jishan alam
    April 18, 2011 at 11:15 am

    your life story is very intresting & i too like it.
    good night

  24. jishan alam
    April 18, 2011 at 11:22 am

    I like your life story .you could prove it everything is possible.And i too like it.
    Good night

  25. shiva
    April 20, 2011 at 12:44 am

    in the name of God
    hello
    my name is shiva .
    I live in iran .
    I am student and stady about math and physics .
    please guide me about air and space science because I like to study about astronaut and air and space science professionaly

  26. shiva
    April 20, 2011 at 12:52 am

    hello
    my name is shiva .I am 17 years old .
    I live in iran .
    I am student and study about math and physics and air and space science . I want to learn them professionaly in future .
    please guide me about them . I want to member of NASA so just try .
    thanks alot

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