Stories From the Heart: How to Love Unconditionally

You just don’t expect it. We were living the perfect family life.  We had just had our second child, the boy we wanted after the first child, a beautiful girl.  My husband and I had met in a choir at University, and always thought it would be nice to have a quartet some day.

We did as most parents do.  We read books, sang songs, and played with both of our children. We enjoyed the busy life of raising two toddlers, sixteen months apart.  But a nagging worry surrounded me about my little boy.

At ten months, he sat up, crawled, pulled himself up as a many do at that age, but he had no apparent need to interact with us.  I would go into his room in the morning to find him sitting pressed into the corner of his crib.  He did not hold up his arms or cry to me to be picked up as his sister had done just months before.  While sitting on the living room floor surrounded by toys and books, his preferred toy would be anything that could dangle or flap.  He would tap his foot on the floor repetitively while staring at it.  I remember joking with my husband, “It looks like he’s Autistic.”

My mother had been a special education teacher, and she brought stories home about the children in her life.  Among the children she taught was a boy with Autism.  Thinking more about that boy, and watching my own little guy not reach milestones his sister had reached, made me investigate further.  I went on to the internet and searched my gut fear, that Timothy had Autism.  I looked for criteria for Autism and found a DSM1V, a diagnostic checklist that is used to check for symptoms that are characteristic of Autism.  Timothy had many of them.

Being only sixteen months at the time, it was hard to find anyone who could diagnose him.  We lived in a large city, and our own pediatrician told us that this was typical male development.  We would have to watch over a longer period of time to reach any kind of diagnosis. But having researched autism extensively, being fairly confident that I knew my own child, and wanting the best outcome for our family, I pressed on for answers.

I contacted the local Autism Society and received a list of local services and doctors.  We decided on a pediatrician who specialized in developmental disorders and was associated with a children’s hospital.  She observed Tim on a rainy Friday.  My husband and I both knew what she would find.

As part of her observation, she asked for us to leave the office and return to see if there would be any separation difficulties.  I knew there would be none.  I often joked we could leave Timothy with the mailman and as long as he was fed and watered, he would be happy.  We truly wanted him to cry for us, but there were no tears except our own.  The doctor told us she expected autism, but would have to watch him over a longer period of time.  We cried, and she asked us, “Isn’t what I am telling you what you expected?”  I replied, “I really wanted to be wrong.”

Timothy is now ten years old.  He is a beautiful boy and we have done the best we can for him.  We have had many challenges over the years, but what I have learned from the outset is to follow my gut.  We knew Tim had Autism before anyone, and we followed our instincts to do what was best for him.  We have always found that if we persevere, we can get the help that we need.

There are many people who have helped us along the way including family, friends and a long list of professionals.  But I have to say the greatest teacher, guide, helper I have had on this journey has to be my son, Timothy.  He taught me to follow my instincts, to persevere when it doesn’t seem worth it anymore, and how to love unconditionally.

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: My Real Patriot

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

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

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.

Coming to Edmonton! From Obstacles to Opportunities: An Inside View on Opening Doors Empowering Students with ASD’s to Succeed!

A Special 1-Day Workshop Presented by Stephen Shore Ed.D.
Edmonton Alberta – Wednesday, May 9th 2012
Oasis Conference and Events Centre

Early Bird Registration Ends April 9th 2012!
Register today to ensure your seat.

Click here to Register as a Parent 99 $79

Click here to Register as a Professional 129 $99

Full event details at http://www.autismedmonton.com

OUTCOME OBJECTIVES

1. Develop greater understanding of what it is like to be an individual with autism
2. Recognize and successfully address common sensory issues that for students with autism
3. Learn effective educational strategies for social inclusion while addressing academics.
4. Create easy to implement, practical solutions for challenges teachers face
5. Educate students with autism in successful advocacy skills as part of an effective transition plan towards leading a fulfilling and productive life.

Going against conventional wisdom, this presentation examines how deficits and challenges so pervasively attributed to autism can be reframed as strengths. Employing an autobiographical structure combined with experiences of others with autism, participants will come away with practical solutions for considering characteristics of autism as potential springboards to success in education from preschool to post graduate, employment, effective self-advocacy, meaningful engagement in the community as building blocks for leading a fulfilling and productive life.

Full event details at http://www.autismedmonton.com

 

Stories From the Heart: The Miracle That I Waited So Long To Feel

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

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