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Posts Tagged ‘In Their Own Words’

In Their Own Words – Dear Future

December 16, 2010 30 comments

This “In Their Own Words” is by Stuart Duncan. His son Cameron has autism and was diagnosed at two and a half. Stuart lives in Toronto, Canada. Check out his Facebook and Twitter.

Dear Future,

I have to be honest, I don’t know you very well.  I don’t know if I can count on you or how reliable you’ll be. I’d like to think that you have only good intentions and that you’ll only get better, but I’m not naive. I know that you’re just as uncertain as I am and quite frankly, that scares me.

You see, my child has autism and as such, the past has presented me with a lot of fears as well as challenges that I’ve had to learn to overcome. I’ve also had to learn how to teach my child to overcome them. The past tends to remind me of those that turned their backs on us, had nothing left to help us with, gave us a lot more questions than answers and basically dropped a bomb on us before leaving us to the cold. To put it mildly, the past has not been too kind to my family. I’d much rather forget the past and move on, which is where you come in.

Dear future, I’m coming to you with an open mind. I know you’re not perfect and that there is already a lot of demand being placed on you. But I have to make you understand that I have a lot riding on you as well. I need you to be kind and compassionate. More so, I need you to have a lot of understanding and to be very accepting.

You see, I don’t know how much longer I’ll be around to take care of my child. And my child needs me so very much. Autism has made my child and I feel very alone in this world. We are looking to you to pick up where I will eventually leave off. I will be depending on you to be there for my child when I no longer can be and I’ll be depending on you to be bright and loving.

I am doing the best that I can now to prepare my child for you, but that’s a daunting task for the best of us. Since my child has autism, it’s just so very much harder. My child needs more guidance, more support, more understanding and more acceptance. The present provides some of these things and it has been helpful. But if I wasn’t here, it wouldn’t be enough.

The present is very nice and friendly but to be honest, I feel like I’m in a dentist’s waiting room and the present is the receptionist. I’m asked a lot of questions to which I answer, but have no idea what any of it means. I’m made to feel welcome with some magazine articles to read and the present even makes some small talk that resembles information sharing. But again, gives me no real answers.

For what seems like forever, I sit and stare at the present while they are constantly writing things down, filing things and taking phone calls from everyone and no one, while I sit there trying to keep my child calm. We’re waiting for you… the future.

Dear future, I’m going to need for you to be prepared. I need for you to do more than just wait until I get to you. The past gave me an awful lot of questions for which the present had no answers to. I will be needing you to provide those answers.

I can’t imagine what life will be like for my child if you don’t have those answers. Answers such as where my child will live, and with whom. Will my child job have a job waiting? Will there be better medications and treatments available that offer more consistent results? Will there be love waiting for my child with the possibilities of a family as well?

I have no one else. You’re it. I’m sending you my child whether you like it or not… for better or worse. Dear future, if you’re not ready for that, please do whatever it is you have to do to be ready. My name will be called soon and my child will be needing you. So I’m needing you right now. Please be ready.

“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.

A Tribute to Gampy

December 3, 2010 2 comments

This is a loving tribute by  Jeanette Dakessian about her father. She is the mother of a 10-year-old son with autism, and her father was a huge part of her son’s life.

I have a 10 year old , mostly nonverbal, son who has autism. He was so attached to  my dad, who he called grampy for many years, until my dad passed away last November from lung cancer.

My dad would come to my house three times a week to meet Tyler’s van at  my house and bring him to daycare because I worked full time, and he was retired. He would get my daughter off the bus as well. Grampy gave Tyler cookies every day for snack and Tyler loved that! He was always very excited when grampy was waiting for him at the house.  He would say “Gampy!!!!” anytime he saw a red truck, which is what my dad drove.

My dad would stop at my house multiple times a week to see the kids. Tyler would run into his bedroom to get his small photo album, come back out into the living room, and grab grampys arm pulling him over to the couch. Then he would take his arm and pull it over his shoulders so grampy was hugging him!

Then he would point at pictures of our family and look at Grampy, in the eyes, which he often has a difficult time doing, and say who ever or whatever was in the picture. For example…tree, ball, bus, Dee Dee(my sister) Di Di(my other sister), and so forth.

My dad would take his baseball hat and put it on backwards because Tyler would look at him and say, “uh oh!!” Then he would take it off my dad and put it back on the right way. It was their special thing, and oh so cute!

Tyler would not take anyone else’s hand and pull them to the couch. Only his Grampy. He loved him a lot and my dad loved him right back.

I brought Tyler to the wake last year and Tyler looked at him and said “night night!”  He does not understand death and it was bittersweet.  It has been a year since my father passed, and to this day, he still says ” Gampy,” when he sees a red truck. He will jump up and down and look so excited thinking “Gampy is back to see me.” It is sad to see that Tyler is disappointed when its not him, but he is so blessed to have had Gampy in his life.

We would like to hear from you! Share your story about your experience as a grandparent of a child with autism. E-mail us at editors@autismspeaks.org. For more information about how grandparents make a difference, visit us here.

In Their Own Words – Thank You

November 22, 2010 5 comments

This “In Their Own Words” post is by Nicholas James DeTommaso. Nicholas recently earned the high distinction of Eagle Scout by creating a website to document and archive the photos,memorabilia and create oral histories of the local American Legion Post 1718 following the sale of their building. He now attends Cooper Union for the Advancement of Arts and Sciences in New York City on full scholarship. Nicholas’s hopes to develop video games and  programming as social learning tools for those who find normal socialization difficult.

At two years old I stopped crying and laughing out loud; I had lost my vocabulary word by word and, I no longer laughed or cried out loud. I had autism, specifically, high-functioning Asperger Syndrome. Communication skills were nonexistent. I had to relearn all of my vocabulary. Word by word, I gained it back, but as I got older, there were social ramifications—talking to new friends was tough. I had a few quirks, sure—I was frustrated at seemingly random times. One other thing—I never said, “Thank you.”

It seemed I could develop friendships and keep them by playing video games. How could something designed for mindless entertainment help an autistic child improve communication and social skills? As James Paul Gee has stated in his 2003 book What Video Games Have to Teach Us About Learning and Literacy, “The video game environment is an environment where everyone has equal access and is treated equitably.” That even starting field was the door through which I could now enter the social world of play.

The logic of computer programming and electrical engineering is fascinating to me. The art of creating programs and to see them work through—to me there is no feeling quite like it. It is a feeling of creation, of satisfaction. By building on these known basics, I’d like to create games, learning tools through fun, which could start autistic children to not only communicate, but also grow socially, in the way I did.

My gift from others, my ability to speak and act socially, is a gift I have never forgotten. I frequently remind myself how lucky I am to have received the help I have over the years, and to that end I always endeavor to give back. In doing so, I not only feel the satisfaction of helping those less fortunate than I, but I also feel happy to repay in part the gifts given to me. Service to others has always been a tenet of my family, and my participation in volunteer groups such as the Boy Scouts, the Red Cross, and my church gives me the opportunity to do just that. I suppose, in the end, that it’s my way of saying, “thank you.”

In Their Own Words – My Dreams for You

November 4, 2010 7 comments

This “In Their Own Words” is by Jennifer. Her daughter Sienna is 3 years-old and was diagnosed at 20 months. To read more check out her blog, Fingerprints of Autism.

The dreams that I had for you were many when you were growing inside me.

When I finally saw your precious face my dreams were coming true.

Slowly my dreams faded away as you started to spiral downward into a dark world.

When I realized you had autism my dreams were torn from me!

When we were fighting our way through the confusion of therapy and treatment my dreams were of healing.

When you started preschool my dreams were of acceptance, friendship, and fun.

Now when I think about my dreams for you they are the same as they were in the beginning!

My dreams for you never left me!

“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.

In Their Own Words – What Does Autism Mean to You?

October 29, 2010 6 comments

Derrick is the father of two wonderful children, one of which, Lucas, as autism. He is a devoted member to the autism community, and has been involved in activity for years. He and his wife, Sandrine, created the South Carolina Autism Services Directory to help parents locate services available for autism, and The LUCAS Network (Loving Unconditionally Children with Autism Support). He is also the Family Services Liaison for Autism Speaks in South Carolina. Derrick succeeded in getting two buildings in South Carolina to “Light It Up Blue” this year, and has worked to light up the BMW Zentrum Museum2011  Campaign.

What does autism mean to you?

What would your answer be if someone asked you this question? I guess it would depend on how you have been personally affected by autism. But instead of focusing on all the different answers someone else would possibly give, let me answer the question from my point of view.

Autism means so many different things to me. It is at the same time my salvation and my tragedy.  Autism came into my world back in October of 2001 when my son was diagnosed.  At that time, it was the end of all the dreams I had in my head of what my son might become.  It was a time of entering into an unknown world full of alien language and signs I could not read or understand. I entered into a completely new culture in which I had to learn by trial and error. Living in France and Austria in my early 20’s did nothing to prepare me for this new world.  The movie Rainman was so far from my reality. Every parent I met that had a child with autism had a child that was so different from mine. My wife bought books to read and asked me to read them as well. I would pick them up and start and then put them down again. I could not wrap my head around what I was reading. It was as if it was written in Chinese. I just could not accept this world that I had been thrown into and was being forced to be a part of. For two years I fought and refused to accept this thing called autism. I could not accept being told that my son would never talk or get a job or drive a car or go to his high school prom. I was tired of being told what my son would never do. How dare they! How the Hell could they know what he would become! Then finally, depression set in and although I tried my best to hide it from my wife and family, I gave up for a few months. I think that Lucas could sense the despair because just when both his mother and I would think he would never do this or that, he would do it the next day to show us that he could.  After about a year of ABA we finally started seeing some signs of progress. Slowly at first but then he would have a burst, as we would call them, of progress. I could see the real Lucas struggling to come out from behind the veil of autism and I saw for the first time my son, his desire to be seen and heard by his father and to have his father fight for him as he was fighting for himself. From that moment on, my way of viewing autism changed. It went from being my worst nightmare to my saving grace.  As I have watched my son grow in all senses of the word, I have seen a child so full of love, so innocent, and so strong of will attract one person after the other into his life and the impact has been enormous for all of us who have been lucky enough to have him in our lives. To know Lucas is to love him. His strong will to succeed has transformed me into a father that will have the same will and determination to advocate for Lucas and others like him until the day I die. Now, although I still wish my son did not have autism, I cannot imagine my world without Lucas as he is. Autism to me is that one piece of the puzzle that you know is there but have not yet found; but you know when you do find it and complete that puzzle, you will have the most beautiful and complete picture you have ever seen. For me and Lucas, together we are putting those puzzle pieces in place one piece at a time and although we are currently only half way to finishing that picture, together we will continue to put the puzzle pieces into place.

“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.


In Their Own Words – Counting to 100

October 20, 2010 7 comments

This “In Their Own Words” is written by Cheairs Frank Graves, a Charlottesville, Va. mother of two. Her son has autism.

“Counted to 100 by himself in front of the entire class during circle time!” That is what his school note said.  I looked at the note in disbelief―my little Margaret-Ann jumping up and down next to me- voice getting louder and louder that she needs a snack. I read the note again. I swell with pride and disbelief. “Mommy, mommy, I am hungry.” Snapped back to the present I take my daughter’s hand and we head to the kitchen to get something to eat.  I get my daughter her favorite snack― goldfish with apple juice and I smile.

If someone had ever told when my son was first diagnosed with autism at the age of two that he would one day stand in front of his kindergarten classroom and count to 100― I would have thought they were crazy.  My two year old could not make the first utterance of any words, could not play with any toy appropriately, and would not respond to his name when I called to him. What on earth would make me think that he would one day be able to count to that magical number of 100?

Well, let me tell you my son has been working!  And when I am feeling hopeless about the progress he is making -he shows me the fight and determination that he has in him to move forward.  I think a little part of him is grinning inside just saying, “Mommy just you wait-when I am ready I am going to show what I can do.” I think he is saying, “Mommy you need to be patient-you need to wait.  I can do so many things it just takes me longer, but just when you least expect it I am going to show you my stuff.”  Well, show me his stuff is exactly what he did on that sunny Monday at school.

I can just see him as his teacher asks him if he wants to count today. I can see him bright eyed say, “Yes, Catherine!” and jump to the front of the circle and  begin to count…..1,2,3,4,5  I can see the determination in his face as he pauses and thinks of the next number.  I can see his classmates looking wide eyed in pure amazement as he counts higher and higher. I can see his teachers holding their breath and feel their hearts pounding with unsure excitement not knowing how high he will count.  I can see everyone’s anticipation―getting ready to clap because he has made it to 50.  Then I can feel the whirl of energy as he continues 51, 52, 53, 54.  I can see his fellow kindergartners giving him the thumbs up as he reaches 71, 72, 73, 74, 75.  Then I can feel the confidence in his words the determination that my little guy is going to count all the way to 100. I can hear his little monotone voice grow strong with every number 91, 92, 93,94, 95, 96, 97―pure concentration 98,99―He is going to do it!!! With a huge smile and a look of unimaginable pride 100!!!!  I can feel the claps and cheers for my son in my bones. I can feel the love that surrounds him from his teachers and classmates in my heart. I can see the huge smile of pride on his face!

Now I was not there on this most special Monday morning at Hollymead Elementary School, but as my friend Catherine who is one of the teacher’s in the class recounts the event to me on the phone that night I can see it all―the amazing triumphant of it all!  I get off the phone and as I sit in bed with my husband and tell him the whole story.  He does not have to say anything. The tears that fill his eyes say it all.

And now my son sound asleep upstairs. I can hear the words coming from his sweet head-“Mommy you need to be patient you need to wait. Just give me a little time” I put my head on my pillow and I close my eyes. “Ok, Dawson I hear you.  I am trying. Patients and waiting―I got it. I am working on it I am working hard just like you……oh, how I love you my sweet boy―my sweet counting to 100 little boy!”

“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.

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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