Stories From the Heart
Stories From the Heart: My Real Patriot
Feb 22nd
Posted by autismtoday in Stories From the Heart
This is a Paper written by my 13 year old son about his 10 year old autistic brother. Sam had to write a paper for school on someone that was a True Patriot. This is what my son and Nick’s brother wrote.
My real Patriot is my little brother Nick. He has always loved things that involve the U.S.A.
Nick has been to Washington D.C., and said that Washington D.C. is the best city in the U.S.A… Nick’s favorite Place there is the White House. He went to the Lincoln Memorial, Arlington Cemetery, and the U.S. Capitol building. Nick also went to the Vietnam Memorial wall, and was very interested in that too. Ever since that trip, Nick has wanted to go back and see more.
Everyday when Nick gets home from school, he plays the song, “Courtesy of the Red, White, and Blue” by Toby Keith. When Nick hears that song he just smiles, and sings the entire time.
Nick is very musical; he plays the piano and the guitar. His favorite song to play on the guitar is “The Star Spangled Banner.” On the piano, Nick has many patriotic songs; he has played them at piano recitals, and at school programs.
Last year, when Nick was in the third grade, he opened an assembly at school that was about Patriotism. He talked about what it meant to be an American, and the history of our great nation.
When Nick was nine years old, he could tell you every President, and the order that they served as President. He could also tell you how long they served. Nick can tell you, when they were born, when they died, and many other facts about their lives. Nick knows which Presidents fought in wars, and if they won a medal of honor.
Nick has wanted to meet the President since I can remember. He has always loved the United States, and the Presidents. He got to sit across the basketball court from President George Bush Sr. last year at a Texas A & M basketball game. Nick says someday he wants to live in the Nick, and be the President of the United States.
Never in my whole life have I ever met anyone as patriotic as my brother Nick. He has always been interested in the Presidents and the facts about our country. I think Nick is an amazing patriot, especially because at 18 months old, he was diagnosed with autism, and now he is 10, and the most proud American I know.
By: Sam Waters
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: An Amazing Teacher
Feb 15th
Posted by autismtoday in Stories From the Heart
It was three days before the new school year would begin. Nick was starting 2nd grade and was somewhat apprehensive about having a new teacher. Nick was diagnosed with autism at age 18 months, and transitioning has always been a difficult area for him. So to make things go more smoothly on the first day, he would usually visit the school, and the teachers a few days before school would actually start. This would be his second year at this school, so he was acquainted with the teachers; however, he wanted to see them, especially the one that would be his homeroom teacher.
Judy, a wonderful woman who has done therapy with Nick since he was three years old, decided to take Nick to the school to meet the new teacher, and say hello to the ones he already knew. Judy has become more than just a therapist to us, she is more like family. She is always thinking ahead on things that will help Nick advance, and ways to make his transitions easier.
They went to meet Mrs. Wiley, Nick’s new teacher, and find out where the new classroom would be. After visiting with Mrs. Wiley, Nick and Judy walked down the hall to see the other teachers for the new year. They met with the principal, and the art teacher, then the librarian and the P.E. coach. After that, it was off to the other end of the school to say hello to visit Mrs. Kotzur, the school’s music teacher, and also Nick’s piano teacher.
Nick and Judy entered the room, but Mrs. Kotzur was not there. Judy suggested to Nick, that he leave Mrs. Kutzor a note on the board to let her know he had come by to say hi. While Nick was doing this, Judy left a note on the desk. As they were leaving, Judy went to the black board to make sure Nick had left his note. He had most certainly had!
Nick had left a perfectly drawn “quarter note” on the black board.
Author Unknown
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: You Gave Me Wings
Feb 8th
Posted by autismtoday in Stories From the Heart
I don’t think it is the first time that I have felt this way but it definitely ranks as one of the most memorable and most painful of my life. Watching someone die is tough. Watching a child with a disability die slowly is indescribable.
These days his eyes are filled with sadness and his lack of energy is understandable. The four ounces I fed him today did nothing but prolong the inevitable. An hour or so after I finished feeding him he coughed weakly a few times then spit out a handful of blood onto the chux cloth beside his chin. I held the paper lined plastic for him and watched the fear grow on his face. I could almost hear him wonder out loud whether this was going to be one of the horrible retching episodes followed by painful coughing and aspiration, or a quiet almost eerie scene that could possibly go unnoticed in the average PMD classroom.
The small puddle of blood didn’t look like much but I knew that it was indicative of a larger problem looming inside that would eventually consume his frail body and wither his spirit as it had over the past several years until eventually there would be nothing left with which to fight. I’ve tried so hard to be strong and the two additional adults that serve this class work daily and diligently to maintain a sense of realism and support that I feel will be the source of our social energy that will see us through. But on days like this I’m driven to tearful emotion as I consider the day’s events and what the future might possibly hold for us all.
I can’t really describe our relationship only to say that it is so very close. Closer than a teacher should ever allow herself to get to a student. But over the years I have found that it is pretty difficult to change someone’s diaper, clean up vomit, and rock them to sleep in your lap, without developing some sort of feeling. I think it would go against all sorts of natural design if I didn’t.
We were destined to relate, to try and make sense of our short time together. I knew it from the moment he was wheeled into the room and immediately cried at all of the overwhelming stimulation that was gently attacking his immature nervous system. Though we tried to prepare him for transitions. A simple thing, like turning classroom lights on and off, was enough to trigger severe neurological and muscular reflexes.
Mealtime via a PMD has always been a source of irritation for him. Rarely did it ever proceed as a typical feeding should. It was often accompanied by reflux, coughing, aspiration and nausea that seemed like it would last until it was time to eat again. Even with all of the issues surrounding his existence, he always managed to smile and laugh especially at the adults in the room. He would always attempt to position himself in such a way as not to miss any of the perceived action in other locations in the room. This natural curiosity, sense of humor and brave spirit was enough to endear him to anyone who took the time to get to know him better.
Nothing ever came easy to him. Things like breathing, digestion, coughing, sleeping, rolling over, searching for and finding that familiar voice that would comfort when things were really bad.
But his persistence and gratitude for the small ways I’ve helped, has taught me many things. I’ve learned not to take so many things for granted, that in the grand scheme of things our time here really is short, that depending on others is quite necessary at times and is something for which we should never be ashamed, that you can have a really good friend and never say a word to each other. and I’ve learned to always take time to do my best each day for it might be the only chance I get.
For these special lessons I am thankful my student that is also my teacher. There is no earthly lesson plan for what remains to be taught. The only prerequisite is a heart willing to learn.
Recently I’ve been on a search for the answers to many questions. I’ve examined my head and my heart and tried to know God’s heart in this situation and if nothing else I can say that over this I have no control. I have no way to intervene, no game plan, no short range objectives, no long range plans. I am helpless, utterly and completely at the mercy of God’s perfect plan.
I guess sometimes we must be brought to that rude realization before the spirit is able to speak. So here I am, waiting and listening. Wanting so much to see an end to his suffering, wanting to have some rational explanation, wanting to make predictions and give direction.
There is no end that I can see, no explanation, no predictions or directions to give or follow, only the haunting lyrics to a song that seems as if it were written just for me and Biscuit:
“You gave me wings and made me fly
You touched my hand I could touch the sky
I lost my faith; you gave it back to me
You said no star was out of reach
You stood by me and I stood tall
I had your love I had it all
I’m grateful for each day you gave me
Maybe I don’t know that much
But I know this much is true
I was blessed because I was loved by you,”
By Anonymous
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: The Miracle That I Waited So Long To Feel
Feb 1st
Posted by autismtoday in Stories From the Heart
Albert Einstein once said, “There are two ways to live. One, as thought nothing is a miracle, and the other, as thought everything is a miracle.” I have this saying on my refrigerator, and I look at it every day to remind me of the miracle of my son, Jare. Sometimes miracles are so obvious, and sometimes they are so small and subtle.
What is miraculous about Jare is he came to this world to teach me about quiet courage, compassion, and forgiveness. If he had been born a typical child, I would not have been given this gift.
This blessing did not come without a price. I came from a loving, yet dysfunctional family situation, where addiction and depression were prevalent. And, after my son was born, spiraled into a post-partum depression that threw my world as I knew it out of control. How could I, the straight A student, the fearless young woman who would defy her past, live in the big city, do everything different than what was done before, and be supermom be straddled with such a jolt, such a nightmare? And then, once Jare was identified with having some developmental challenges, was my depression to blame? Now, I was not only depressed, but guilt washed upon my soul like a tsunami.
I did what any loving parent would do; jumped into therapies, research, interventions, networking, and loving and accepting the situation, even if those closest to us were unable. And, it wasn’t until much later, that I knew the incredible son, whose soul was so ahead of its’ time, whose observations about the world, so honest, so raw, whose ability to love and accept without judgment was unwavering, was my lesson about life: forgiveness, and looking beyond the material and physical world.
He is my world of unconditional love, and of a higher power. Jare is my “guidepost”, and I am the student, reading the signs.
There are challenges now. He is an adolescent, and some kids can be cruel to those who are not on par with them socially. His peers are not always at level to appreciate the “quirks” as gifts the way that I do. But I am certain that he will, in the future, be a “teacher” to one of them, and they will experience the small miracle that Einstein was talking about. The miracle that I waited so long to feel.
By Anonymous
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience
Stories From the Heart: Mommy, Am I a Real Boy Now?
Jan 25th
Posted by autismtoday in Stories From the Heart
The following is a collection of quotes from Alyxander, our Autistic 9 year old has said to me throughout our many years of therapy and doctor’s visits. Many times, it was these thoughts which sustained us through the difficult road his disability has taken us on.
“Do you remember when I was inside you? I do. It was warm and dark, but I wasn’t scared. I used to talk and whisper with my brothers when we were all together. I let them go out first, but I was shy. I hid in the back.”
“I love my Family. I want them to always be with me.”
“Other kids hurt me. They won’t play with me. Why not?”
“I don’t want to talk to others. Make them all go away.”
“Too much noise and heat. Leave me alone.”
“I really like Star Wars. I want to be a Jedi, and go to other worlds.”
“I can’t read, but really I can.”
“When my family is with me, I can do anything.”
“Francine is my therapist. She lets me stay in the cocoon. It is safe and warm and dark. I can remember things in the cocoon.”
“Mommy, what is Autistic? Is it like being an Indian?”
“Mommy, am I a real boy now?”
“I am a real boy now.”
Yes, Alyxander you are real boy now.
By Anonymous
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: A Lesson Learned
Jan 18th
Posted by autismtoday in Stories From the Heart
On March 19, 1985, a beautiful, bouncing baby boy named Matthew was born. On January 26, 1987, he was diagnosed with Autism and our family’s life was changed forever.
Matthew looked like the three B’s of babies with autism … big, blonde and blue-eyed! At least that’s what many looked like in 1987. Back then autism showed up in 1 out of 10,000 births with 3 out of 4 being males. We were a bit of an oddity back then, but things have certainly changed since.
It was a good three days before the diagnosis set in and the grief began. It was deep and nauseating but eventually floated away like fog rolling out after a good rain. After all, he was still my Matthew. Could life really change that much? We found out quick just how much.
After observing Matt for 15 minutes, our school system was determined to label him with mental retardation and provide him with an inadequate program. Matthew had many strengths that were not even being considered. It was then I knew it would be up to my husband and I to advocate for what’s best for Matt … nobody would be doing this for us.
We ended up in a pre-hearing conference with our school system and won the right to have him educated at the Groden Center, a day school program for children with Autism within an integrated pre-school. Back then, very few programs provided integration with typically developing children, but the few studies out there and our gut told us this would be extremely important for Matt’s success. Placing him there when he was three years old was the first and best decision we ever made, and sending him back to his home school three years later was the second.
When he finally said “Mom”, he was five years old and shortly after became toilet-trained, which were miracles in themselves. He left the Groden program toilet trained, using some basic words and was able to read close to 200 sight words. I still keep the flash cards in my bed stand to remind me of the road traveled. He entered Kindergarten with a trained one-on-one teaching assistant at Washington Oak School in Coventry, Rhode Island. Little did I know that the wonderful peers he came to know as friends on that first day would become the grown up young adults he would graduate from Coventry High School in June of 2004.
I would love to say that between the wonderful school supports, great peers and a supportive family he had over the years was enough to make everything perfect in his life. But that would not be true. His autism, combined with an additional diagnosis of bipolar disorder at age 9 made his life and ours quite challenging. The irony was that we now had a child with mood swings who could not tell us how he felt. The crying, the anger, the anxiety were all part of the everyday experiences throughout his school years. The challenge to our school system as well as our family, especially his brother and sister were on-going.
Just when we thought we were in the right direction, things would change again. There were days when his OCD was so bad that it would take him two hours just to get from his bedroom to the morning school bus. Many of those days, we just pulled down the shades and stayed home.
But the reality is that Matthew’s autism has brought us joys greater than any sorrow. For every day of sadness there has been a day of celebration! The kindness shared from doctors, teachers, friends and neighbors who shared our laughter and well as our tears have created lifelong relationships. These individuals choose to be on this journey with us. They are simply the best of the best! Our paths would likely never have crossed if we had not taken the road less traveled.
There have been “moments of greatness” I don’t believe we would’ve ever experienced. The duet Matt and I sang in a school cabaret with a standing ovation of 400 people, the wilderness field trip where he had to climb over a ten foot wall with six friends under him helping him over the top, the many years where he sang the Star Spangled Banner for an auditorium full of people, or when he read “Green Eggs and Ham” to Kindergarten children when he was in 5th grade are just a handful of examples.
Most importantly, walking across the stage and receiving his high school diploma with 450 of his classmates was a moment that will be etched in our hearts forever.
At 20 years old, we are getting ready for his adult life to begin and it’s possible there will be more obstacles ahead. But I’ve learned that life has challenges for each of us and these experiences define our purpose. What I know for sure is that Matthew’s Autism has brought our lives a sense of compassion, sensitivity and empathy we may have never known. And moments we will never forget! The world could use a few more compassionate people. Maybe that’s what Autism is really meant to teach us!
Deb Belanger
Mother of Joe, Matthew and Aimee
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: Eye Contact
Jan 11th
Posted by autismtoday in Stories From the Heart
I’d give anything for a glance in my direction. I ache for it. All my other children will look into my eyes when I speak to them, but he won’t. It’s not by choice; he just can’t do it. Although he isn’t blind, a neurological condition does make it difficult, if not impossible.
How easily we take for granted that simple, little gesture. Yet, how significant its impact when it is lacking. I was always told that as a good listener you must give eye contact and other appropriate body language to let the speaker know you are paying attention. So, does that mean he’s not listening to me? Probably. Maybe. And if the eyes are truly the “windows to our soul,” will my son never be able recognize or acknowledge the true essence of another person?
Some adults inflicted with the same, mild form of autism as my son have been able to articulate their position on this (allegedly) essential, non-verbal communication skill. Their general consensus is that they can’t concentrate on what you are saying if they have to look you in the eye. It’s almost painful for them. But more than that, I imagine that they don’t really see the need for it at all. Just because we don’t think they are listening doesn’t mean they aren’t.
Neurotypicals, as the rest of us are called, must come across as being a really self-conscious bunch, always needing affirmation and validation, both verbal and non-verbal. It reminds me of a story of a mother who asked her teenage son with high functioning autism why he never tells her he loves her. “I already told you when I was seven; my feelings for you haven’t changed,” was his response.
So, why do I need eye contact from my son to feel that we have a bond or connection? It’s not his hang-up. At school they are teaching him to look people in the eye when they speak to him, and God love him, he is trying. Yet, sometimes it feels more like he’s looking through you, rather than at you.
So much pressure to put on such a small child who did not choose his Autism. If I didn’t have my other three children who are capable of providing eye contact, would it be harder for me to accept my son’s limitation? Would I be more desperate than ever for it? Or would I be able to come to terms with it sooner, being that it would be all I’d ever known?
Parenting a child with special needs forces you to adjust your expectations. This doesn’t always have to be negative, though. I’ve learned that what is important for me as a mother is to let my children love me anyway they know how. My oldest daughter has many ways of showing me love. She is very affectionate and tells me constantly that she loves me. We even butt heads frequently on many issues. This, too, is another way she shows her love for me, as a measure of trust. Even my two, young babies express their love for me. They cry when they see me leave the house, and then show such excitement upon my return.
My son shows his love for me, too, in his own special way. When I see him concentrating on his drawings or hear him laughing at his favorite cartoons, I know he is happy and, we are meeting his needs. Although his speech is improving, he still can’t quite communicate with me in the typical way. However, when he tells me the same knock-knock joke for the twentieth time in a row, I know he is sharing something important with me. He wants to hear me laugh with him. I know that he could have chosen to sit in his room, cocooning himself in his flannel Tigger sheet, with only his stuffed animals for companionship. No, he has chosen to be near me, rather than disappear into his own world. For this I am grateful. Eye contact, or no eye contact, I love him too.
By Jen Warwick
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: I’m Still Your Michael
Jan 4th
Posted by autismtoday in Stories From the Heart
My son was born with dark brown hair and deep blue eyes with eyes lashes that women spend hundreds of dollars trying to duplicate. He was the perfect baby. He was gorgeous and rarely cried.
However, as he grew older, I began to realize that something wasn’t quite right. He didn’t reach developmental milestones when he should and by two he wasn’t talking. I started taking him to specialists but it wasn’t until Michael was 6 that he was diagnosed with Autism.
I was devastated. The doctor’s told me that my little boy would never lead a normal life. He would never have a regular job, never live independently, never go to college, get married and have the family I dreamed of for him.
One night as I was sitting there pretending I was feeling sorry for my son but truly feeling sorry for myself, I flipped the TV to a special on autism. I sat there crying in my self-pity and Michael walked into the room. He sat down on the floor and began to watch the show. This was very unusual. Michael was never interested in TV unless it was commercials. He sat there for a long time and towards the end of the show, he looked up at me and said, “That’s what I have isn’t it, Mommy? I have autism.” My heart fell into a million pieces as I said quietly, “Yes”.
“Well,” Michael said, “that’s OK because I’m still your Michael,” and he got up and trotted out of the room.
It was at that moment that I realized he was right. It didn’t matter what label the doctors gave him or what challenges we faced. He was my little boy, my Michael, and together we would make it through this.
That is exactly what we have done. Together with God`s help, my son has made incredible progress. His diagnosis has been changed to Asperger’s Syndrome. He is fully main-streamed in school and has an active social life. He’s a freshman in high school and plans to go to college and become a pediatrician. He faces challenges every day of trying to understand the social complexities of this world and trying to fit in. Math is incredibly difficult for him but reading and science are his things. He reads constantly and has an amazing innate understanding of biology. He is my hero.
By Anonymous
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: Angel on Earth
Dec 28th
Posted by autismtoday in Stories From the Heart
Our first child, Matthew, was a much anticipated and planned-for child. We had diligently finished college, established our careers and delayed parenthood until we could comfortably afford it and until I could stay home and be a full-time mother. So much for planning for the perfect situation!
Matthew was a cute, but difficult baby from day one. He had sucking problems, followed by vomiting problems, followed by fussiness, and on and on. At one point, my husband wondered aloud if I was even “mother challenged” as I was overwhelmed and in tears at times. Because Matthew had to be held upright for 30 minutes after each feeding to reduce his chances of vomiting up an entire feeding and because he wanted to eat every two hours into toddler age, it felt as if I was always feeding, holding him or changing him. My husband was frustrated that I was frustrated.
Matthew became a patient at Children’s Hospital as an infant but it was not until he was five years old that he was diagnosed as having Asperger’s Syndrome, which is lumped under “Autism Spectrum Disorder”.
At age five, Matthew was still vomiting daily, slept very little, had no fear and was obsessed with Halloween and all things spooky. We were not prepared for a diagnosis of Autism and grieved deeply for our sweet little boy. We had delayed parenthood so that we could give our child every opportunity and it pained our hearts that Matthew would not have the full, complete life as we had imagined it. We could see how much he had suffered (who wants to vomit repeatedly every day?) and were brokenhearted as we read everything we could get our hands on about the disorder.
That was eight years ago. Today, Matthew is fourteen years old. He has a delightful and unique sense of humor and is always cracking us up. He makes me stop and consider a new way of looking at things every day with his comments. He truly sees things that a typical person never considers. He has taught us the beauty of asymmetry. The insights he has given us have made us both better persons. Our hearts and minds have been expanded by being with Matthew. We are more open-minded, tolerant, and at peace than before Matthew. We have changed our opinions of what we choose to get upset over. More situations seem like “small stuff” than before Matthew.
We would never maintain that watching Matthew struggle is easy for either of us. On our bad days, we still catch ourselves grieving for Matthew. He struggles with directions, self-care, feeling confused and overwhelmed with the world of “Typicals”. He requires specialized education and has been attending after-school social skills instruction for eight years. He works very hard at things that come easily to typical people and always will. But, it warms our heart to see how far he has come. He is growing into a kind, thoughtful, honest man. He has a gentleness and pureness about him that inspires us to be more like him. He truly seems untainted by the world around us and cannot understand why people do bad things. He seems like an angel on earth.
The name “angel” means “Gift from God”. We knew exactly what name we wanted for our boy when I was five months pregnant. It took much longer to realize how perfect the name was for our son. We truly believe he is a gift and he has given us more than we can every hope to give him.
By Anonymous
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Stories From the Heart: Irish Eyes
Dec 21st
Posted by autismtoday in Stories From the Heart
As an undergraduate student, I was majoring in Physical Therapy. I had chosen to pursue a career in Physical Therapy in high school, and had never really questioned the decision. During my senior year, I had the opportunity to volunteer at a BOCES in Ithaca, New York. I was focusing on pediatrics, and felt this would be good practice. I had no idea it would be a life altering experience.
I was placed in a classroom of children with severe and multiple disabilities ranging from autism to cystic fibrosis. Many of the students were unable to speak or walk. This was a very different type of environment for me. However, I began to look forward to the afternoons I would spend in the BOCES classroom between my own classes at Ithaca College. The classroom teacher involved his students in activities I never would have thought possible. The class went bowling, took part in scavenger hunts, cooked meals, and danced at school concerts. The time I was spending with the students was opening my eyes to the endless ways in which children who had seemed unable to do many of the things I took for granted, could take part in the community and enjoy the same activities I enjoyed.
While all of my experiences in that classroom touched me, there was one day and one child who changed the path of my life forever. That afternoon, Jay, a child with cerebral palsy who used a wheelchair and had no verbal language, needed help getting his coat on to go home. As I leaned over his wheelchair and buttoned up his winter coat, one of my curls plopped forward in front of Jay’s face. I felt a little tug on my hair and looked up to see Jay bouncing the curl, laughing, and staring right into my eyes. His green eyes were sparkling. I rubbed his hair and joked around with him while he laughed and continued to gaze at me. At that moment, something changed inside of me. This child was making an effort to communicate and interact with me. That is when I realized the difference I was making in the lives of those children. I wanted to continue to make that difference.
A few months later, I decided not to continue in the field of Physical Therapy. The next fall I began working towards a Master’s degree in Special Education. Today I am teaching children with Autism and experiencing moments such as that each day. Every time one of my students makes a connection with me, comes over to give me a hug, jokes around with me, masters a skill, makes progress in his behavior, or just smiles at me, I know that I made the right decision. I have never once regretted volunteering at BOCES or changing the direction of my professional life.
I will always remember Jay. I am thankful that he came into my life at that time and was able to have such an impact on me and the lives of all of the children I will touch throughout my teaching career.
By Anonymous
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
