I work day in and day out with children who have an array of disabilities. Truth be known, no two children are ever the same, despite the same labeled disabilities. What fascinates yet mystifies me at the same time, is our inability to see things the way that they do.
Many children I work with have selective oral expression. But I feel we learn more from them, than I do from co-workers, friends and family. Sometimes we educational assistants, teachers, special education teachers, respite workers and so on, get so caught up in societal rules of normalcy that we often don’t take the time to see the things that we can learn from our students. This leads me into my story.
As I was walking along a hiking trail with a little Autistic boy, I was watching him look all over the place and smelling things. I was trying to get him to touch certain items like tree moss or water by the river, but touch was a very difficult sensation for him. He was highly touch sensitive. So I kept trying to say things like “Look at that flower, let’s go smell and touch it”. Every time his response would be “No thank you.”
We finished the hike and went back to the classroom to write down a few things in categories. We separated what we saw, what we heard, and what we felt. Having no problem with the first two categories, we moved on to the “What We Felt” section.
To be quite honest, I didn’t know what he was going to write, since he didn’t want to touch any of the items. So I told him to leave it blank. But, by that time I said that, it was already filled in. I figured that he probably wrote down what he saw me touching, such as the tree moss, branches and water.
But when I read his answer the two things he wrote down that he felt; were the hot sun on my face, and a soft wind flowing past my ears when we stopped walking to take a rest.
How profound was that! I was so proud of his answers! Perhaps we should all take the time to feel the wind.
By Jennifer De Franceschi
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
Perhaps through some miracle, my son David may turn out to be like Alfred Nobel, Pablo Picasso, or Hikari, but it is extremely unlikely. Those people touched the lives of multitudes through their works. David touches the lives of only a few, but the lives that he does touch are greatly enriched by his presence.
His smile is his greatest work of art. He has uttered only a very few words, but not one of those words has ever been cruel or dishonest. Each word has been precious to us. David knows how to love others and accepts the love of others with grace and dignity. His family, his friends at school, his teachers, and everyone else who know him have learned something from him, and see the world a little differently because he has touched their lives. He finds joy in the world, and he brings joy to it. His presence transforms us in wonderful ways.
He is not likely to turn out to be a great scientist, musician, or artist whose name will be remembered throughout the ages, but neither will I. Neither will the vast majority of the people on this planet, and yet their lives have meaning. My hope is not about who he might become; I simply hope I will never lose the ability to see the wonder of the person he already is. He has the courage to live in the present, and, through him, I am learning to live there, too.
He teaches me to accept him for who he is, to accept and embrace his disabilities along with every other part of him. Having learned that lesson, perhaps I can learn to accept myself the way I am and everyone else just the way they are as well.
The hope that I hold for my child is that he can live his life among people who respect and cherish him as he is, and that he can touch the lives of those people. I think that is more than enough for any of us. David teaches me something about being human, and as I begin to learn it, I am becoming more human.
My relationship with David is not unique. Parents and thousands of others whose lives are touched by people with severe disabilities tell us about their own transformations. Sometimes they talk about little things; sometimes the effects that they describe are huge, but they all see the world differently and, in some way, they draw on a new strength. Somehow they come to a new place in their lives, an unexpected place, and discover that they like where they find themselves.
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
If you or someone you know receives a diagnosis for their child, student, family member or client you need to tell them early intervention is the best chance they have to get the child the help they need. Be sure to tell them to get over it fast. Do not stay in a state of denial. It will only hurt the child. Most importantly, start addressing the problem and help the child right away so they can have the best shot at life. After all, we only get one shot.
Here are some very important tips to get them started.
Top Ten Things To Know & Do If Autism Strikes Your Family!
2. Qualify Your Doctor. Locate a medical doctor who specializes in autism and has experience treating autism. A referral from another parents or a reputable autism organization works best.
3. Reach Out for Help. Discover and make use of specific government agencies and public services that support the cause, especially in the early intervention arena.
4. Look Into Special Services. Check into related health services such as speech and language, recreational therapy, occupational therapy, physical and behavioral therapy and so forth.
5. Use the Internet. Go to reliable website sources to educate yourselves on programs, services, interventions, therapies and supports.
6. Take Frequent Breaks. Find and use qualified respite for yourselves as caregivers and use it. You will need it.
7. Educate Your Family. Educate relatives, friends, neighbors and your child’s siblings and peers about what autism is and what you and your family are going through. They will be able to accept him or her and understand the challenges more easily which leads to acceptance.
8. Get Involved. Attend conferences for educational information and also the fellowship aspects by meeting with other family members, individuals with autism and other professionals in the field. You may find lifelong alliances there!
9. Get Up to Speed. Stay current with the latest medical, biomedical, behavioral and education services so you can pick and choose what is right for your child and your family.
10. Plan for the Future. Currently autism is a lifelong disorder and until something radically changes, the autism is not going to go away. With proper interventions it improves over time and with the best mindset from the parents, caregivers and people that support the child they can be guided towards a great outcome leading happy, fulfilling lives.
Autism Today offers extensive information to parents and the autism community by way of leading conferences, books, DVD’S and through current technology.
For more information visit www.autismtoday.com
Also check out: www.AutismDC.com for information on “The National Leadership Autism Conference–Autism Through the Lifespan For Families, Educators and Professionals.
I remember the day of my son’s diagnosis of Autism as if it were yesterday. The tone of the doctor’s voice, the silence in the room, the words “lifelong disability, no cure, I’m sorry” still sting when I allow myself to reflect on that day. But I have thought, on occasions too numerous to count, that someone should’ve mentioned that THIS would be part of the package when my child was diagnosed with Autism.
Someone forgot to mention that I would listen to my child’s simple utterances, or attempted approximations, as if he was a world leader giving the speech of a lifetime. I could never have imagined the worth of a single word despite the fact that I may never hear it again.
Someone forgot to mention that when my son was finally potty trained at age 9 there would be few people that would understand the significance of such an accomplishment, and even fewer that I could actually share it with. Accomplishments of any size, their true worth known only to me, would bring quiet celebrations between my son and I.
Someone should have mentioned that Autism is messy! That wallpaper’s meant to be shredded, bathrooms are designed to be flooded, walls are bare in order to smear stuff on them, washable paint really isn’t, and that most food will actually be crushed or dropped on the floor.
Any parent can readily recall what it felt like the first time they held their child for the first time after birth. In my opinion there is no better feeling in the world. Someone should have mentioned that each time your child with Autism initiates or engages in a reciprocal hug, that feeling that you had when you held them for the first time comes back, time and time again.
I wish someone would’ve mentioned that Autism is extremely expensive! Doctors, therapists, medications, supplements, conferences, and sensory equipment are only the tip of the iceberg. I could not have guessed that it would be my child’s disability which allowed people to cross our path in life that otherwise would not have, and that those people would respond to a child in need with such love and generosity.
Finally, what they forgot to mention the day my son was diagnosed with Autism, is that the triumphs over his disability would far outweigh the tears, that laughter would eventually ease the sense of loss, and that sheer faith would allow me, and millions of other parents, to fall into bed exhausted each night only to get up the next day eager to discover what else they forgot to mention.
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
My son Joshua was welcomed into this world in November, 2000. It had been a difficult pregnancy with premature labor at 7 months, followed by 2 months of bed rest. He was born healthy and his dad, sister, and I were grateful.
The first year was challenging. Josh had trouble sleeping, eating and was often sick. At age 2 he was not speaking more than 3 words. Our first speech therapist assured us he was fine and recommended once a week speech therapy. Over the next few months, as we were on a waiting list for speech services, we watched our little boy slip away from us. He lost the 3 words he had, stopped looking at us, continued to have trouble eating, and continued to have frequent illnesses.
He was on multiple breathing medications, constantly drooled, and lost interest in the world around him. In the middle of his second year, we were told our son had Autism and Apraxia of Speech. Being an Occupational Therapist myself, I was not terribly surprised but none the less devastated.
Other than being told to pursue therapies, we were left directionless. I began on a mission to find out how to help our son. I started a journal and wrote down everything that happened in Josh’s life. I read everything I could get my hands on. Josh went through 2 more speech therapists before finding one that he didn’t run away from. Through all the rough times those first 2 years my husband and I would occasionally see signs from Josh that he really did want to be in our world and needed our help getting there.
It wasn’t until after Josh’s 3rd birthday that he began making sounds again. However, during his second year of life, we began noticing special skills in our son. He had an usual love for numbers and letters. He was counting with number magnets and knew all 26 letters of the alphabet. Yet he could not talk.
In my journal, a particular entry on July 25th, 2003, stands out in my memory. I had arrived at the daycare where my son had attended since birth. Josh was 2 and 1/2 years old. He was outside in an enclosed play area for the toddlers. He saw me from across the play area and looked at me; for probably 20-30 seconds. It was as if he was seeing me for the first time. It took my breath away. He didn’t look at me after that for a long time, but I knew I would reach him eventually.
We continued with therapies and also began the dietary interventions of gluten free and dairy/casein free eating. It was very difficult and expensive, but how could I not try it? What if it helped? Soon our son began talking. He stopped being sick and was taken off all breathing medications. Speech progress was very slow and tiring, but hearing his voice was music to our ears.
Josh worked very hard and was delighted with his accomplishments. Once talking, we found out he could read as well as count into the hundreds and spell 100′s of words. He began interacting with us and occasionally with others too. He was getting closer to our world. Our hard work continued over the next 2 years. Keeping him focused on his homework, and making sure his food was safe, but as close to normal as possible.
Reading in my journal again leads me to the most memorable entry. It was May 2005. It had been a long day with the kids. I was putting Joshua to bed. After tucking him in and saying goodnight, Josh said goodnight to me! I was so happy to hear him return my nightly gesture. I said “Thanks Josh”. He looked at me and said “I love you”.
That was the first time he had ever said those words to me. It was Mother’s Day.
It’s so amazing to me how much you can love your children. It is even more amazing to me how much children learn from their parents, and how much we, as their parents, learn from them.
Having a child on the Autism-Spectrum Disorder is challenging, but also provides meaningful opportunities. Our son Bo was diagnosed with Autism at the age of 2 1/2. We started therapies within 4-6 weeks of his diagnosis and have been going strong ever since. Yes our family has had many ups and downs, but somewhere among the three of us there has always been a core strength that gets us through the difficult times. That core strength being a combination of our faith, honesty, and love towards God, and each other.
We always tried to be honest and direct with Bo about his Autism, and his autistic tendencies to script or perseverate on a certain topic, hand flapping or stimulatory behavior. When he hand-flapped, we said “no-flapping.” When he would script or “stim”, we would show him what he looked like or also we told him that “Mommy and Daddy want to talk to you, but you’re not listening,” or “You’re not with us. So please stop or go to your room if you need alone time.”
If he scripted a movie or show, we would tell him that “We aren’t talking about that right now.” He always wanted to be in character, and we would always tell him to “Be Bo, because we love you for who you are”. “Just be yourself”, we would say. We always felt being honest was the right thing, but sometimes, as parents often do, we would second guess ourselves whether he really understood what we were trying to tell him.
One morning Bo and I were on the computer doing a learning disk that one of our psychologists had recommended for Bo’s processing skills. This was not his favorite activity and there was a rhyming game that he just could not seem to comprehend, and wasn’t able to follow through on the instructions.
Wanting to help him I kept motivating him in different ways and assisting him. The more I tried to help, the more he got frustrated at me and at the computer. And then I started to get frustrated that he was unable to get the task done and for him being frustrated at me. Needless to say it was an ugly start to the day and we did not get to finish the game.
Later that night, on that ugly computer day, I was helping Bo brush his teeth. We always did silly sounds or vowels and letter sounds so he would open his mouth wide and I could finish up his brushing job. Reflecting on the day, and feeling like I failed him earlier that morning. I was determined that I was going to help him understand the rhyming game. So I started acting like the computer game. And waited for a response.Bo took out his toothbrush and looked right at me and said “Mommy just be yourself, I like you just the way you are.” “Just be Mommy”.
WOW!, as tears rolled down my cheek, I thought of how far we have all come in 2 1/2 years, when Bo could barely understand a question or word. He’s now 5 years old and telling me to be honest and to just be myself. What a smart little boy he is. How proud I am of him, and relieved that being “just Mommy” is enough.
Like many kids with Autism, Byron has a hard time believing things that are seemingly illogical or abstract. Religion in general is a difficult concept for him to understand and study because it asks him to have faith in things he can’t use his senses to confirm.
“Mom”, he whispered to me on Easter morning, “you do realize that people don’t come back from the dead?”
“Yes, you’re right, but Jesus was special. He was God’s Son. You just have to believe He rose from the dead and know in your heart it’s true,” was my answer. His quick response back was “Mom, you know, your heart is just a muscle….?”
One Sunday morning after his church school class his teacher came to me with the news that Byron had been acting out during the lesson and said some totally inappropriate things. This wasn’t the first time he had behaved in such a way, but my husband and I decided that instead of the usual punishment of no computer or television or video games we would try a new tactic. We told him he needed to talk to God a little more, so it would be his job to say our family’s grace at the dinner table for the next week.
You would have thought we were torturing him with instruments from the Inquisition! He spent the rest of the day informing me and everyone else that there was no way he would talk to God. “You can’t make me say grace” became the mantra of the afternoon. “I won’t do it” he would mutter under his breath every few minutes. “Mom, that’s not fair” was shouted out at regular intervals.
As luck would have it my in-laws were visiting from out-of-state and we had planned a dinner that just happened to be one of Byron’s favorites! The smell of ham, au gratin potatoes and crescent rolls in the oven had all of us anticipating the food, but not necessarily the moments that would precede our meal. Soon I announced that everything was almost ready so it was time to wash up and sit down.
Byron stomped into the dining room and sat slouched in his seat while the rest of us found our chairs. I had spoken with my husband ahead of time about how I would remove Byron from the table and take him to his bedroom if he refused to follow our request. It was with a sinking feeling that I asked Byron to bless our table. Nothing happened for a moment. Then another moment passed and the hush stretched even longer. Just as I opened my mouth to speak we heard a loud noise.
“Bbbrrrrriiing!” Puzzled silence filled the room.
This telephone-like noise was coming from Byron, whose eyes were closed tight and whose face was scrunched up!
I peeped questioningly at my husband and at my confused in-laws. Suddenly, Byron began speaking in a deep, formal, monotone voice.
“Hello. You have reached God’s answering machine. He is not available to listen to your prayers right now, but leave a message and He will get back to you later.” This was followed by a long pause.
Another moment of silence filled the room as I saw my mother-in law’s shoulders begin shaking with silent laughter and my husband’s eyes rolling toward the ceiling.
“Dear God”, said Byron, “bless all this food and bless my family too. Amen and goodbye.” He quickly opened his eyes and looked up at me. “Mom” he said, “I didn’t talk to God”.
We looked at each other for a moment and I saw the confusion and anger leave his face. “I’m sure he’ll get the message” I said, “and you can catch him tomorrow.” “OK” he said, secure in the knowledge that God would be there for him whenever he was ready to talk and no matter what he done.
The rest of the week Byron’s graces were wonderfully reflective and inspiring, as well as thankful and unconventional! Byron might not have been ready to talk to God on that Sunday evening, but he knew God would get the message and appreciate that some kids need a little extra time and understanding when it comes to prayer and all the mysteries of faith. Byron is truly our blessing and we thank God every day for him and his quirky observations and interpretations of life!
In the fall 0f 1999 I took my daughter Micaela to the Tri-State fair parade. She was 3 years old and had just been diagnosed with Autism. Although I had known she had a speech delay and Autistic tendencies officially getting the diagnosis was devastating. I asked the doctors, “Will she be able to talk, read, write or drive a car when she’s older”? “We don’t know”, is the only answer they could give me.
As I wheeled her stroller down the sidewalk I wondered how she would react to the sounds and excitement of the parade. She had never been to a parade before and I knew the noise and crowds might be too much sensory overload for her. I was hoping she would be fascinated with the horses or even laugh at a clown or wave back as a fire truck went by. Mostly I just wanted to have a fun time like all the families there. I remembered the excitement of a parade when I was a girl and I wanted Micaela to have the same joyful memories.
I found a spot near the curb to park the stroller and sat down beside her. “It’s a parade.” I told her. She ignored me. As the fire trucks and motorcycle cops passed she showed no interest. She was only interested in playing with the seatbelt on her stroller.
She briefly glanced at a clown when I pointed him out. I stood and held her up as the horses passed so she could see how big and beautiful they were. She screamed and cried to be put back in the safety of her stroller. She held her ears as the band went by as the music was toxic to her senses. Instead of thinking of high school pep rallies and enjoying the rhythm of the drums I found myself wishing they would pass a little faster, and be a little quieter.
Micaela is crying now and the parade is torture to her. She doesn’t understand any of it and doesn’t care. Then I see the next float, a flat bed trailer loaded with elementary age girls dressed in their cheerleading outfits. They are smiling, waving their pom-poms and yelling their cheers in perfect unison. All of the sudden it hits me and I realize – my daughter will never be a cheerleader.
The tears start flowing uncontrollably as I stand watching them pass. I start to think of all the things my daughter will not be. She will never be a homecoming queen, drive a car, or get married. There won’t be any basket ball games or slumber parties. No friends or summer camps. All the grief and all the potential of a life lost overwhelm me. We leave the parade both in tears, and I hope I do not run into someone I know and have to explain why I’m crying.
I had never given much thought to cheerleaders before. I wasn’t one myself and so it didn’t hold any particular importance to me. I never wanted my daughter to fall into a social clique –cheerleader-pretty and popular but also sometimes snotty, shallow and stuck up. I was more interested in a daughter that was smart and had a kind heart, but when faced with all the grief of what she would never be a cheerleader didn’t sound too bad.
As the years pass I still grieve at times. When her cousins pass milestones that she doesn’t it’s a reminder, but somehow it makes the small things sweeter and more precious. Now I’m pleased with small accomplishments and progress of any kind. When my daughter helps me vacuum instead of crying at the sight of a vacuum cleaner it makes me happy. When I see her sit on a horse with perfect posture, tall and confident without any fear I’m so proud of her. I’ve watched her handle many obstacles with grace.
When she was diagnosed with Diabetes at the age of 8 she faced the challenge with a good attitude. She never shed tears over the shots or cried over the finger sticks. She never felt sorry for herself, never whined or complained. She was brave and smart and quickly learned how to give the shots herself, and then I realized… she has all the attitude, charisma and enthusiasm of a cheerleader.
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.
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