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  • Gesture Speaks Volumes

    There are many forms of communication; verbal, facial expressions, written words, and gesture (body language). Each is generally used in conjunction with the others.  We read all this information at once using our senses. Autistic children have difficulty in communication because some areas of communication out-weigh others.  Too much noise.... too much light........ too much skin sensation......  It's this difficulty in taking it all in that makes it difficult to socialize.  Many autistic children do not speak, some do not write, and many do not read facial expressions very well.  To compound the problem, some seem to have a heightened sensory input.  This was Matt. When Matt was very young – between the ages of 2-5 years old – noise hurt, bright lights were avoided, certain smells and tastes were met with disgust.  Matt didn’t speak, he didn’t write, and he avoided eye-contact.  So how did we communicate? I communicated with him using every form of communication I could think of.  I smiled - a lot!  Matt would glance at my face when I spoke.  That quick fleeting glance was long enough to tell him if it was safe to look again. I called this behavior “checking out my mood”.  A smile meant he needn’t flee or squirm to get away.  I used a soft voice . . . a soothing tone just above a whisper.  If he were in my lap I would use the closeness to whisper gently into his ear.  More times than not, Matt would relax into my arms and listen.  These were quiet forms of communication and he received them. Receiving doesn’t necessarily mean he understood, only that he allowed the communication to proceed.  Matt was communicating with me also - I just didn't know it for awhile. A doctor once asked me, “How do you know when he’s thirsty, or hungry, or wants something?”  My reply was, “I just know.”  Of course, I look back on that now and can see I didn’t “just know”, in reality I was reading his gestures.  Matt was training me to communicate. Matt would walk into the kitchen and look up at the cabinet.  He wanted a glass of water.  Matt would pick a video tape and hand it to me.  He wanted to watch that particular video.  Matt would place a toy in the cart in the toy department.  He wanted me to buy it.  It seems so simple.  After all, all kids do it.  But when the child’s major form of communication is gesture, the parents become experts in reading even subtle hints.  If he stood in front of me, then he wanted my attention.  Once he had my attention he would give a hint as to what my next move should be. Arms raised high above his head meant he needed me to put him on my shoulders.  I would take him firmly under his arms and swing him in an arc upward as his legs flew apart to straddle both sides of my neck.  Nothing could harm him up there (it must have also been a great viewpoint). Whenever he was tired of walking or needed to feel safe from what was at ground-level his hands would jut upward and his eyes would dart pleadingly at mine. I could even read his mood by paying attention to the velocity of his hand-flapping.  Fast flapping – scared or excited.  Slow –contentment or interest in what he was doing. In a world void of words, body language was everything.  I was excellent at reading him and he knew exactly which clues I understood.  Basically, I was a great student and he was a great teacher.  What a team! Matt began to draw and to speak at age 5.  Instead of dropping back on the body language he just added his new-found communication skills to his already impressive list of gestures. And although Matt now speaks quite well, can write wonderfully, draw magnificent pictures, and can look directly at a person’s face when talking to them, he still relies heavily on his gestures. He is 25 years old and I still have to force him to voice his thoughts each day. Examples: He steps out to where I can see him and then steps on his empty pop carton.  I look over – as required.  I know this is his gesture for telling me he is out of pop.  “Are you out of pop, or do you have some in your refrigerator?” I ask.  “I am out of pop.” He states matter-of-factly.  “You’ll need to write it on the grocery list, O.K?”  Matt will then write it on the list. Matt stands before me, hat on his head and hands in pockets jiggling his change.  I know he wants to go shopping.  “What’s up, Matt?” I ask.  “Um,” he hesitates and the jingling gets louder and more intense.  His eyes look to the door, then upward as if to show me he is wearing his hat.  “Do you want to go somewhere?” I inquire.  “Are we going to the store?” he asks.  Asking is safer then demanding –Matt never demands anything. I could just jump up and do what ever it is he wants me to do.  I could take that route – it’s easy, I really know Matt very well.  Instead, I keep in mind that Matt needs to communicate verbally as much as possible because that is how the majority of people communicate.  I won’t always be there to read his body language.  He needs to learn to use all the other forms of communication too. A few weekends back we took Matt to Christiansburg for a day of shopping.  Matt had birthday money and gift cards burning a hole in his pocket and needed to spend it.  We had three specific stores on our destination list.  “Which store do you want to go to first?” I asked.  Matt took out his wallet and pulled out a gift card for Barnes and Nobel.  He looked at me.  It was obvious where he wanted to go first.  Instead of acknowledging his gesture I listed the three places and asked him to pick.  He looked at his gift card, back to me and then back to his card. I smiled and waited. The car was quiet.  He looked a bit frustrated.  Why did I not know?  Wasn’t it obvious? “Where to, Matt?” I asked again.  Again his eyes shifted from his card to me and back to his card.  After a few minutes of this game he held his card in his hand and told me, “Barnes and Nobel”, shifting his eyes back to his card then to me.  Matt was trying to train me.....again ( I obviously must not understand that the card in his hand was for Barnes and Nobel - how stupid could I be?)  Instead of acting dumb and playing along I just came right out and told him that he needed to say it out loud.  I let him know that, yes, I knew what store the card was for, and that I understood, but that daddy was the one driving and he couldn’t see what Matt was doing. Basically, Matt had to say it out loud so that daddy knew where he wanted to go.  This seemed to be an acceptable explanation as he replied, “Oh, O.K.” Matt knows how to train others to read him.  He is very good at gesture - even people that don’t see him very often can usually understand his gestures.  But... speech is important too.  Matt and I compromise on communication; I want Matt to use his speech, Matt wants to rely on his art of gesture.  Of course he does – it was the very first way we “spoke” to one another, the communication method we forged in the early years of his life, why wouldn't he want to hang on to it?  It's difficult to give that up.  So, it may be a bit of tug-o-war but I am hopeful that we will eventually meet in the middle and that Matt and I will eventually feel equally comfortable using both.

  • Autism - It's Impossible to Predict

    When holding my newborn baby in my arms it was impossible to predict his future.  As a mother I immediately glanced ahead in my minds eye trying to imagine his life and who he would become.  Would he be an artist? A doctor? An astronaut? President?  It’s funny how I thought about artist first.  I am an artist – an unfulfilled dream of actually working as an artist has always been my biggest regret.  I come from poor people and the artist stereotype is one of poverty until, if ever, you get your first big break. I couldn’t take that route. I had to have a stable paycheck. I guess I wanted my son to be who I couldn’t be - an artist. Imagine my surprise and giddiness when at the tender age of 18 months Matt was holding objects at arms length and viewing these objects from all angles.  I saw an artist.  It was not long afterward that Matt was diagnosed as autistic.  Still, even though such behavior is a classic autistic trait, I couldn’t help but see the artist just beneath the surface.  Matt was only 3 years old when I taught him how to trace a picture.  His love for drawing was born that day.  His hands first slowly and purposeful tracing each line soon began to fly across the page with each new attempt.  It wasn’t long before he was drawing freehand. Matt turned out to be a very gifted artist. It’s impossible to predict which child will be autistic and which child will not.  Parents today must consider this possibility when having children as the chances of autism have skyrocketed to a 1:110 chance overall, and 1:70 chance if the baby is a boy.  I didn’t think of such things when I was pregnant – autism was still relatively rare at 1:10,000. No one even knew what an autistic child was capable of learning. If the child is autistic, then it is also impossible to predict to what degree of autism they will have. The autism spectrum is enormous – from very mild behaviors to severe, and no 2 autistic children are alike.  This further complicates things as parents can’t even compare progress or success of their child to other autistic children.  I never knew another autistic child as Matt was growing up. Matt was diagnosed as moderate to severe.  The prognosis set forth was poor.  The doctors suggested Matt would be too much for me to bear. It is obvious to me now that the doctors simply didn’t know much about autism back then. Having never even heard of autism also meant that it never occurred to me to compare him to other autistic children – for which I am thankful. I had no preconceived ideas. What I did do was to compare him to my other neurotypical children.  What could Matt do that they could do?  What could Matt learn that they had learned? This was the bar that I set for my son.  A high, sometimes an impossibly high, bar of success was set in my mind.  I pushed for each minor step.  Simple things, like speaking, writing, and learning basic math and science in school were one set of goals.  Learning to go to thebathroom, take a bath, get dressed, brush his teeth, and make his bed, were a whole additional set of goals. All of them seemed like awfully high hurdles back then, but he learned them.  Tiny successes, like the day he took his own bath without me, were reasons for celebration and sometimes tears.  After all, the professionals of the time had predicted he would never do any of these things.  I trained myself to be extremely observant so I would not miss out on the high of seeing something amazing.  Over the years I became a behavior- observation junky (I remain one to this day). Imagine my high as I watched my autistic son walk across the stage at graduation, with honor cords around his neck, and a proud smile on his face.  I remember wondering, “Would there ever again be such an amazing parental high?” To answer that question, yes.  The amazing changes just keep coming! It’s also impossible to predict how autism will affect their life. Matt is 25 years old and I can still not predict what his life will be like even 5 years from now.  I have set goals for him – like driving and living on his own – but these are still in the planning stages.  What Matt will accept for himself is not something I can simply force upon him. He wants to drive a small truck and he wants his own apartment and this is the driving force for the goals I set – Matt really wants these things.  Will he drive?  Will he live on his own?  I can’t predict.  I don’t even want to speculate – it might ruin the next amazing high. All in all, autism is impossible to predict.  You never know if a child will be autistic, or if autistic, to what degree.  You never know if your autistic child will be able to achieve the smallest of goals, or what their life will be like just a few years down the road.  Parents of an autistic child live in the moment and reach for the future in a very different way than parents of the normal, neurotypical child.  They set their expectations differently, not lower by no means, but rather at a slower pace.  Each day brings the possibility of seeing something amazing, of knowing your child in a very different way.  Matt fulfills a part of me I never knew existed until he entered my life.  The very least I can do is to be his tour guide to the possibilities that lay before him.  His wonderful accomplishments thus far tend to enhance the brightness of his future. Yet, when or how he gets there is still impossible to predict.

  • An Afternoon at Radford University

    Matt had been looking forward to it for weeks.  When I told him I would be teaching a class at my alma mater Matt immediately expressed his desire to go with me.  Of course, Matt wasn’t interested in sitting in on my class.  He was excited about exploring the campus.  Matt loves exploring college campuses.  Radford University is one of his favorites –mostly because he remembers when I was a student there.  He knows the science buildings rather well.  Matt had gone with me several days prior when I signed my contract, paid for parking and did all the little things that come with a new hire.  He had to checkout the bookstore, the fountain, and get a Mountain Dew from one of the many vending machines.  We talked about how different the campus looked after so many years.  New buildings had sprung up in almost every corner, spreading the college to what seemed twice its size. Tom was still home when I started my teaching days for RU.  His new job was still a week or so away (in Montgomery, Alabama) and he was delighted to hang out on campus with Matt while my class was in session. We agreed to meet at the jeep at 3:00pm. After class I walked to the jeep.  It was still a few minutes before 3 and the guys were not there yet.  I put my book-bag in the jeep and glanced around.  I recognized Matt’s hat right away.  Tom and Matt were sitting in the shade at a small patio behind the science building.  As I called for them they looked up and waved.  I knew immediately that their time on campus had been enjoyable – Matt was smiling ear to ear, an excited swagger to his steps meant he was feeling good – really feeling good –about who he is. I love that look. I heard about his purchase of an RU t-shirt from thebookstore, his leisurely ride on his Razor scooter between Young and Porterfield Halls, and his sketches of the campus.  I couldn’t wait to see his sketches.  Matt loves to draw buildings. Each time we take Matt to Virginia Tech he draws a different statue or building.  It’s apparent Matt loves the architecture.  On Radford University’s campus he drew one of the older buildings, the McConnell Library. Tom told me they sat in grass in full sunlight with a straight on view of the library.  Unfortunately, the day was quite warm, rather hot in the full sun and Matt was getting hot. Uncomfortable but determined, his hands flew across the page and within 5-7 minutes had drawn McConnell Library and expressed his need to find some shade. Wow, 5-7 minutes.  I couldn’t draw my first line in that amount of time, much less a rough draft of the whole building! I was amazed – as always – of his artistic ability, and congratulated him on a job well done. I really wish I could convince Matt to take a class – especially an art class.  Alas, Matt is leery of classes.  He hates exams and has an awful fear of failure, though I suspect there is something much deeper going on in his mind.  I see it on his face and in his eyes. I think the un-named fear is that someone will tell him to do it differently.  Matt has his own way of doing everything and although he takes suggestions very well (not that he follows them every time) but he takes criticism – even constructive criticism –poorly.  The best remarks upon improving technique would be seen as insulting. His art is his art.  There is not an artist in the world, regardless of how admired, that could put a grade on his art.  To Matt, all of his art is deserving of an  A+, even the drafts.  If he improves upon a drawing it is because it is requested gently, for reasons other than neatness of the lines or depth of the shading. I can sometimes get Matt to improve a work of art if I request it from a different angle.  I looked at his beautiful rough draft and thought how great it would be if he had done it in pen.  The striking contrast of  black ink on white paper would really make the details stand out.  Yes, I made the request.  His face scrunched – as if I had just insulted his ability. I explained that I wanted one to put on this web site and that it would show up better than the pencil draft.  He thought for a moment and decided my motives were pure enough to do one for me in ink. This is why Matt doesn’t bother with art school.  He fears criticism.  He would need a facilitator for explaining the demands of each course and his facilitator would have to know just how to phrase each comment on technique.  I wish I could be his facilitator, attend his courses and re-phrase each instruction so that Matt would feel at ease, feel that higher education was exciting and enjoyable and not just one demanding chore after another.  I can’t – I have to work to pay the bills like everyone else I know.  But wouldn’t it be great to really help Matt to go down a different road?  An education in art would bring out new renderings of architecture that he could sell, make a living at, and help him to live within his own little niche. Matt has been drawing now for almost 45 minutes.  He didn’t redraw the sketch. Instead, he inked over it, improving this line and that. He took his time, he concentrated on the original piece of art, and true to his nature, never changed the essence of the picture.  The black on white contrast is eye catching.  I knew it would be. I uploaded both to “Matt’s Art” page of this site so you can judge for yourself. As parents we always want the absolute best for our children.  We want their dreams to come true, taking precedence over even our own dreams.  It is more so when the child is autistic.  They need an extra boost, some additional support, and more focus on the future to see their dreams fulfilled. Our other children are in charge of their own futures now, but Matt’s future is quite dependent on me.  So even though Matt will not take another college course this year, there’s always the possibility for next year.  Until then, Matt will continue to acclimate to the college atmosphere as long as I keep encouraging him to come along.  And, I will continue to make gentle suggestions about his art in an attempt to alleviate his fear of criticism.  One day soon it will dawn on me how to persuade him to try a new technique, take up a new medium or subject matter in an attempt to broaden his horizons.  Until then, I will continue to be astounded at who he is now.

  • A Road Less Traveled

    The young autistic child seems captive to another world. Matt’s first teachers assumed this as Matt appeared withdrawn, in another world, and they assumed he wasn’t learning. I was guilty of such thoughts myself about "a world of his own" too for a short while. It’s what one is told and it’s easy to believe. Fortunately, it’s not true. Matt was in the dark, in a fearful place, but he was still in my world and I in his. This story is about the enlightenment that comes when those around you also see that our world and the autistic’s world is one and the same. Matt learned his alphabet very differently than you or I. First, instead of reciting the alphabet song, Matt shadow danced. He created shadows using his body and the shadows that were cast looked like each letter. He always started with A and could not stop – for anything – until he had reached the letter Z. He only did his dance when he was alone, for the simple pleasure of expressing new knowledge. At school, no one paid Matt much attention. He hid under tables or walked the perimeter of the classroom, but he never interacted during the lessons. His teachers thought it best to just let him be. But Matt fooled them all. He not only heard each lesson, he was able to express what he learned in a unique, artistic manner. Once I let Matt know how beautiful his shadows were through praise and requests for more, he became confident enough to begin showing them to me upon request. I brought his shadow dance to the attention of his teachers. They observed his creative display of the alphabet and were amazed. It was an eye opening experience for them. They soon realized Matt was not in another world, he was in their world, albeit in the shadows, but he was there - and he was learning. This provided a challenge to the teachers to be creative themselves. They needed to test Matt in order to grade his knowledge level. In order to get an accurate estimate of his ability they would need to think in very creative ways themselves. After viewing the beauty and creativity of the shadow dance his teachers understood that Matt was in essence, throwing down the gauntlet for them to think outside the box. The teachers rose to the occasion and I am very proud of each one for meeting the challenge with such enthusiasm. The shadow dance began to disappear as Matt began to write. When he finally wrote the alphabet out letter by letter the finished product was perfect. But watching him write it out was the fun part. The rest of us neurotypical individuals learn to read and write left to right on a page. We’re not born knowing which direction to read and write – we learn it. Matt had not practiced much in the writing process but he was learning the alphabet. His first few weeks actually writing the letters showed me quite clearly that we think in an order that is learned. For Matt, learning was an alternate route – a destination that could be arrived at by various roads. Matt decided to start with the letter Z on the right side of the page and wrote each of the letters, in reverse order, right to left. The finished product was identical to the line of consecutive letters of the alphabet. If you hadn’t seen him actually write it you would have no idea that the task had been completed in reverse. Teaching the autistic child is an adventure in creativity. You get to witness the unique ways in which the human mind can take-in and process new information. In addition, you get to use the creative parts of your own mind to help meet the needs of a child. In doing so, we get to venture down the road less traveled. Our journey allows us to see and experience a greater world - a world that both the autistic individual and the non-autistic individual can share.

  • Potentially Speaking

    Potentially Speaking . . . It's back to school time and I am getting to know my new crop of students.  I have known them now for almost 2 weeks and have already seen the tremendous potential they possess.  I teach at several levels; high school dual-credit, college freshman and college sophomores.  I teach 17 year olds and adults in their 50sand beyond.  The students come from every socioeconomic class, race and culture. When I walk into class I find myself filing away the potential success of those in my keep.  A parent returning to college after 20 years, a 17 year old with dreams of being a Lawyer, an 18 year old trying to juggle course work with campus activities – all are here to learn something from me.  They bring with them a great deal of potential. Potential – each student possesses it. An autistic student is no different.  It takes a bit longer to find their strengths and their weaknesses, but I know the potential for learning is there, as is their potential to succeed and achieve their dreams.  Autism used to be such a rare syndrome that people would look at my son more as a curiosity than a young mind to be opened. Teachers had to get to know him a bit, try various methods of teaching and ask a hundred questions before they realized just how much potential this quiet young man carried with him.  As the numbers of autistic individuals increases in this country (now 1:70) many false stereotypes block the view of seeing their individual potential.  A TV drama or series has an episode with an autistic child and the day after it airs everyone has become an expert. They feel pity. They do not see potential. Autism is a spectrum disorder – which means each child may have some similarities, but each child is unique in their combination of abilities and disabilities. A spectrum disorder means that children do not look alike, act alike, or have the same emotional or mental capabilities. I wish everyone would not focus so much on the behaviors. Alas, I have resolved to have more patience; after all, it takes time to educate the masses.  But what I would really like others to see is the child’spotential. Every child can learn. Each can move forward, albeit, at a snails pace at times, but still the forward momentum is there. Potential is transformed into kinetic. When potential is expected you will see it.  When potential is not expected, no one bothers to look. The diagnosis of Matt’s autism was followed by “You should put him in a home”.  Why?  He has so much potential! I know Matt has dreams and aspirations just waiting to be realized.  I know. The doctors didn’t expect much forward momentum, so they never really looked for it.  I, on the other hand, expected to see it and watched for it - daily.  The first time he walked up steps alternating his feet. The first time his eyes caught mine.  The first time he wrote his name.  The first time he got an “A” in class. The first time he hit a ball. The first time he made a friend. Last spring, Matt took his first stroll by himself. This past summer, Matt constructed a platform bed for his room. All those tiny pieces of his potential revealed themselves over the years, gradually coalescing into the man he wants to be.  All those flecks of what could be became entire glistening jewels of achievements and obstacles surmounted.  Matt is living proof that there is much potential in an autistic child, just as there is with any child. Many people do not realize their dreams.  What happened to them along their life’s road that changed their drive toward their goal? What choices forced them to abandon their hopes of becoming more?  As I said earlier, I teach individuals of all ages and from all walks of life.  I know there is still potential in all of us that can be transformed into the realization of a dream and at any age.  The autistic child is no different. The route may be longer and the hills may be steeper but there is really nothing stopping the forward momentum once the potential turns kinetic. The first step is to acknowledge that the potential is there.

  • Memories of the Beach

    Matt has always loved the water and going to the beach was always a time of high excitement. One of our favorite destinations is the Outer Banks of North Carolina. For Matt it was especially wonderful as it has the Wright Brother’s Memorial, light houses and shopping too. Matt loves historical places and every time we go we are obliged to visit the location of the first-flight sand dunes, memorial and exhibits. Matt and I have even walked the entire path of the distance the plane flew on one winter trip. It was very cold. I still can feel how the winter air was biting our exposed faces and hands as we stepped along the path from marker to marker. It was important to him. I hate the cold but Matt wanted, no – needed - to do it and I just couldn’t say “no” to that pleading expression on his face. The memorial monument we have seen up close on sunny days and on cold, blustery days because it was expected of us. Matt took pictures of the artwork carved in the marble from every angle as well as the view from atop on each trip. We explored several light houses over the years; Ocracoke, Hatteras, Currituck, and Bodie Island. I have a fear of heights and walking the hundreds of open stairs to the top of each light house was always an adventure for me – a white knuckle adventure! Matt needed to go to the top, experience the history, visit the museums and always buy some small souvenir. It was a part of his routine. Of course, the water crashing on the beach was the absolute best place to be. Over the years we have walked miles on the beach, built massive sand castles and even driven the jeep on the sandy beach trails. We have jumped in the ocean when the water temperature was freezing (or at least it felt freezing in June) and lay on air rafts and watched dolphins swim right by us on hot summer days. Yep, I love the beach. The more secluded the better. Over the years we have gone further and further away from where the crowds congregate and more toward the long stretches of deserted sand. It doesn’t matter to Matt. He would be fine in any beach area because his focus is always on the water, the sky and the beauty of the beach. I know he is looking at the beauty of it. He points it out to Tom and I all the time. “Look at the sky” or “pelicans!” and even “Oh my!” are heard uttered on every trip. Has he always been this aware of his world? There were times when I wondered if he saw what I saw – but those days are long gone. In those days Matt was a young child, didn’t speak much and seemed very focused on the historical nature of the Outer Banks. As he grew into a teenager and his speech was more fluent I became aware that Matt saw everything I did and probably more. His artistic nature marveled at colors painted at sunset across the Pamlico Sound, the gracefulness of pelicans in flight, the spray of sparkles as the waves crashed on sand. He drew many pictures and took many more with his camera. Matt was changing drastically during these years. His body grew tall and his voice deepened. He understood more facial expressions and body language and was eager to learn more. He watched his siblings interact and joined in good-natured banter, and he began to take mental notes about the likes and dislike of others. By this I mean Matt actually started to care about my fear of heights, my love of pelicans and my love of beach-combing for shells. We have gone into the light houses many times and Matt knows that I have fears about height. Now as we walk up the stairs he sets the pace slow and reaches for my hand every few minutes to comfort me. It’s his way of protecting me. He has witnessed his daddy doing it a thousand times and understood that a strong hand can calm. When pelicans come into view gliding across the water and diving for dinner he excitedly points them out to me. He has seen his daddy show me a thousand times and has heard the excitement in my voice when I see those magnificent birds. He walks the beach with us, sometimes for hours without complaint, picking up shells. I know Matt has no real interest in the shells themselves, but he knows that I do have an interest. Matt picks up shell after shell, and not just any shell. He picks among the clusters only shells he has seen his daddy or I pick up. He shows them off with pride and slips them into a bag, just like we do. When we get home he offers his shells to us. They were for us all along. On one of our last beach trips we stayed in Buxton and walked the point daily. We arrived shortly after a storm had passed through and the waves were still quite large and loud. One evening Tom, Christopher and Matt were shell hunting where the high water mark left by high tide had deposited a multitude of small shells. I was at the water’s edge mesmerized by the waves in the moonlight. “Ok, ocean” I said out-loud, “toss me a really big shell!”. A moment later a large wave crashed near my feet and as it pulled back to the sea I spotted a rolling shell. I ran to pick it up before the next wave could take it back. It turned out to be a prize catch. A large 10 inch conch un-broken and beautifully colored was firmly clasped in my hands for the very first time. I excitedly called out to the gang and they came running. All were astounded by my find and all immediately scanned the beach near the wave break. The time flew as each of us ran for shells and repeatedly were chased back to beach by the waves. Matt was a big part of “the great shell chase” of 2008. He ran toward the water and scooped up a shell and excitedly ran back up the beach as the next waved chased him. He brought his magnificent find directly to me, handed it off and went back to look for more. As we walked back to the Jeep we noticed the waves had deposited the fluorescent algae as well. Each step we took left a briefly lighted footprint in the sand. It turned out to be my absolute favorite memory of the beach. The underlying story here is this. Matt blended in beautifully. He hunted shells, marveled at the glowing algae, commented on the beauty of the moonlight on the waves and joined in at every turn. It never even crossed my mind that Matt was autistic that day. He had learned over the years how to watch for facial expressions, body language and voice inflections and as he had matured his responses his actions had become second nature – not forced expressions or comments. Matt was just being . . . well, Matt. I know the fear a parent has upon hearing the diagnosis of autism. I know the hurdles parents face as their young child displays odd behaviors and speech patterns. I also know the joy of watching this same child grow and mature, leaving behind many of those traits. I have seen him watching and learning social cues and actively practice the various interactions the rest of us take for granted. I have witnessed the subtle changes in empathy, awareness and bonding. It is not that an autistic person can not feel these things – it just takes much longer for them to learn and they need role models to mimic. So take heart, parents of young autistic children, a wonderful blossoming is most likely in their future. The key is be the good role model for them to study and learn from.

  • In His Own Words

    Today’s blog is written by my son Matt – no, really!  I found one of his school projects and in reading it over thought, “Wow – this is Matt in his own words”.  I thought I would share this with you.  The descriptions of the pages are mine, but the words are Matt’s words.  These words tell more about how he felt about himself and the world around him better than I.  I left in the misspellings and put all the commas and dashes in just as he has them.  So here goes . . . In May of 2001 Matt was required to do a project – on himself.  The cover page is full of drawings of the things he liked most that year; the Titanic, Trains (of course), the Sears Tower (tallest building), the atomic bomb explosion (WWII history) and Johnny Bravo (a cartoon character). His table of contents lists the categories he had to cover; 1.      a photograph of himself – which was a picture of him and me at the river 2.      vital data 3.      My people 4.      My heritage 5.      Who am I? 6.      What I do 7.      My Favorite things 8.      Changing 9.      Steps to change 10.  Tomorrow. Vital Data Date of birth: I was born Jan 14, 1986. Age: My age is 15. General Description of Myself: Height: 5 foot 9 inches tall, weight: 160 pounds, hair – short + brown, eyes – bule, nice, gentle, - man, I’m pretty. Little feet, little muscles but very smart. My People The people that are important to me are my brothers, Chris + Jacob, and my sister, Sarah. My Mama and Papa are also important. My Ms. Austin is special and my best friend Kevin. Chris is graduating. Jacob loves magic cards. Kevin is in my class! Ms. Austin is sweet! Sarah will be driving! My daddy is nuts! My Mama is crazy! (these last 2 were meant to be funny – but hmmm, it could be true .. .) My Heritage This is a family tree that I helped him draw with all the members from both sides of our Brady-Bunch type marriage. Who am I? (Matt was suppose to describe how he saw his personality) Matthew is an 8th grader.  I don’t like homework, But I like high school and my friends. I am autistic.  I see and do things different than other people.  I work slower than most people.  I like to draw anything. Drawing helps me remember facts. I can’t look at people because I feel uncomfortable.  I don’t make friends easy.  Don’t like change + food texturies bother me.  Mama takes care of me at home, Ms.Austin helps me out at school. What I do (Areas where Matt feels good about who he is) I like to play sports like golf and soccer.I was at Special Olympics for 5 years. I won 13 blue ribbons. I did 3 science projects and won 2 grand prize, and 1 red ribbon. I like Titanic movie and work on a model the ship. I best thing is drawing. I like to draw cartoon characters.  My favorite place is the Field Museum of Natural History because I like dinosaurs especially T-rex, Brachiosaurus. My Favorite Things Music – I like to sing with my favorite songs. Motherless Child – by Eric Clapton I Don’t Want Miss a Thing – by Aerosmith Touch of Grey – Grateful Dead I’m Eighteen – Creed T.V. – these shows make me laugh Three Stooges – I like Curly the best, he’s funny + makes funny noises Cartoon Cartoon Fridays – Ed, Edd,n’ Eddie, Powerpuff Girls, Johnny Bravo, Dexter’s Lab, Cow and Chicken, Courage the Cowardly Dog, Mike, Lu and Og and I am Weasel Movies – I like comedies because they make me laugh Jackie Chan’s Who Am I?, Wayne’s World, Blues Brothers 2000, + Mousehunt. Sports: I like to watch all kinds of sports.  I want my teams to win. Baseball, Basketball, Golf, Hockey,Soccer, Bowling, and Tennis Hobbies: I like the sethings because they make me feel good. Things I like to do - Drawing, playing games, listen to the music, ride my scooter, watching TV, eat at McDonald’s Changing ( Matt was to describe how he would like to changewithin 5 years) I would like to graduate with good grades and lots of friends.  My goal is to go to Radford University. I need to work on homeworkand big labs. I want to college by myself. I want to learn to drive and be a man. I want to be an artist after my finish college. I want to be a cartoonist. I need a good job to make money to support myself + so my mom won’t worry about me. Steps for Change I need to feel comfortable with people so I can study at Radford University. I need to talk to people + make new friends. I need to more active in school +community.  I need to slow down + make eye contact. I need to learn to talk to people. Tomorrow . ( 20 yearslater and Matt is to write a letter to describe what his life is like) Dear Kevin, I graduated from high school with you. I’ll so graduate Radford University. I got my degree in Art + Science. I have a new art studio in Wytheville. I like drawing cartoons all day and getting pay. I sell my art in Chicago. I like to travel by car. It’s a pretty trip my family in Rockford, Ill. I’m doing so well and business. I plan to make my studio bigger. If you need help let me know. You’re my best friend.  Matt Well, that’s it. If you read between the lines (as I do) then you can see a self awareness emerging in Matt.  He was grappling with some very tough emotions.  He wanted so much to be like others his age.  Matt was 15 years old.  He felt different and alone.  He had dreams and set goals. As I read his words my heart ached all over again.  Oh, if I could have only made it just a bit easier for him . . . These words, Matt’s words, were written 9 years ago when Matt was still a child.  Things have changed quit a bit since then.  Matt did make good grades.  He has eye-contact now.  He speaks more easily with others and he likes meeting new people.  His choice in colleges has changed over the years from RU to Virginia Tech.   He knows how to drive a car (he just doesn’t drive).  He goes to college (it’s just part-time). So even if he hasn’t conquered all those goals – yet – we know he will one day. We are working on those dreams, but we move slow in the world of autism. Eventually, we’ll get him to where he needs to be.

  • Moving Forward

    Tom got a new assignment in Durham – close to home.  As part of his job package he gets a fancy-dancy apartment.  Matt was ready for the new adventure and happily packed for his new destination. After a week, Tom and Matt returned home for the weekend and all was normal again – but just for the weekend.  They left again and this time I returned with them for a short vacation between semesters. I got the grand tour of their new bachelor pad.  No, Tom is not the bachelor - Matt is.  The apartment had its own washer-dryer,dishwasher, internet, cable, and furnished with all new pieces; couch, chair, table, bed, dresser and even linens.  It had a weight room, 2 pools and 2 tennis courts. For all its amenities it lacked a touch of home.  So, after Tom left for work Matt and I decorated.  We hung pictures, organized closets and moved the furniture.  Matt put in the wall hangers, decided which pictures to hang where and organized all his stuff.  I showed him how to use the dishwasher and gave him this chore.  We all explored the apartment complex and the shopping district and Matt was excited to find all his regular hangouts. Now comes the hard part – giving him independence. I’m back home in Virginia,Tom is back to work and Matt is the king of his new domain.  He is learning how to run the washer and dryer so he can do his own laundry.  He is using the phone everyday to call his mother (and I anxiously await his calls each afternoon).  But now it is time tomove forward.  Matt will be going for walks – by himself.  His first practice is tomorrow afternoon.  Tom will be giving Matt his own key and pass card. He’ll walk alone on a path around the apartments and he’ll go to the weight room using his pass card.  All the while Tom will be watching – from a discrete distance.  Matt has been asked to call me when he leaves and call me upon his return.  Our instructions were fairly simple: take your cell phone, key, pass card and MP3 player and enjoy your walk.  For added safety I had Tom write a note for Matt to carry in his pocket.  The note is pretty straight-forward – Name, address, emergency call numbers and that Matt is autistic. It’s a hard thing to do – letting go.  For parents of an autistic child, or any handicapped child for that matter, it is especially difficult.  You have to fight with yourself.  Part of me says, “Protect him at any cost” and another part shouts back, “What kind of life is that?” The argument continues between the warring factions of my brain, “He could get hurt, he could get lost, he could run into unscrupulous people” is countered with “He’s a man and needs to find his place. Give him some credit for his intelligence – he won’t get lost. Everyone risks the unknown – let go and give him a chance”.  It’s very difficult to be a parent of an autistic son as the mind battles are almost constant. But I listen to my son. I listen to his dreams and his desires for independence and I want him to always feel supported and loved.  Matt really is a man – not a child.  We want him to one day be on his own to enjoy life as he sees fit.   So, we practice.  We practice chores, we practice phone calls,we practice eating habits and personal hygiene and now we are about to embarkon practicing the freedom of movement. Tom will work the day after Matt’s first secured practice-walk.  Matt will call me – excitedly, I’msure – as he embarks on his first unaccompanied walk and activity.  He will know real freedom and he will enjoy himself tremendously.  He’ll explore the area and visit the weight-room.  He’ll take his time.  And when he returns back to the apartment he will call me and tell me all about his wonderful new daily activity – and I will fight back tears of joy as I listen to his voice - his deep grown-up voice. Most of you know the old saying Life Is What You Make It.  We are trying, struggling, fighting, and pushing ourselves to make Matt’s life as he would want it – to be totally independent. Each step may seem so small and yet each is a leap of faith. It would be much easier to just take care of him – to treat him as a child.  Matt’s autism makes him appear as a child in my mind - but that’s just because he is my child. I know that Matt is all grown-up.  He looks like a man.  He wants to feel like a man.  And so I push myself to let go – slowly.  Practice not only gives Matt self confidence and a safety net, it gives me the time I need to adjust to the simple fact that Matt needs his freedom. In each precarious step along the way, we are all finding the strength to keep moving forward.

  • Signs of Progress

    The Kluge center for Children in Charlottesville, Virginia scheduled Matt for periodic visits. They were scheduled about a year apart and the purpose of these visits was to track Matt’s progress in all areas included in a skills check-list for age appropriate skills and behaviors. Matt was still not talking on his first visit back after his initial diagnosis the year before. The therapist tried to get Matt to speak. He did not comply. His only language at that time consisted of “no”, “yes”, “water”, “drink” – Matt was now 4 years old. The window for speech ability was going to close within the next year. His therapist was very concerned. Being able to say a few words is not the same as having speech. Speech is a form of communication and Matt’s communication was still mostly grunts, moans and body language. It was time to put in a back-up plan just in case the next year he remained at his present level of talking. The therapist instructed me on how to use sign-language and had me practice. Signing provided me a new way to communicate and I embraced it. I practice several signs and used them on Matt every day. He didn’t like watching my hands and had no fascination with my gestures. I slowly realized that sign-language was not going to work. Still, I kept at it. I wanted to talk to my son and I really didn’t care if it was through signing or speech. My favorite sign, and the one I used most often, was the one for “I love you”. You extend your thumb, index finger and pinky finger upward while keeping the ring and middle finger bent. Each night at bedtime I kissed Matt and said “I love you” both in words and in signing. I found it difficult to tell whether or not he made the connection. I found out later that he had been watching, listening and learning all along. Although Matt was not doing age appropriate behaviors, most of his skills were higher than average for his age. He had a few skills that were deceptively low-level, like not knowing how to use a key in a lock.  You have to look at the whole grading system to understand why he failed. You see, the lock and key test was sprung on him during his Kluge Center visit. The occupational therapist gave him a key and set the locked box in front of him. She then began timing him. He had never even seen a lock or a key, and he had no curiosity about what was in the box. After several minutes she secretively marked her grade sheet. “Did he fail?” I asked. “Well, he didn’t even attempt to open the box and never showed any curiosity.” She stated back. “Matt can do that trick” I countered, “give me the key.” She politely handed me the key, placating the hysterical parent. “Matt, watch this!” I said directly to Matt as I sat on the floor beside him. Matt watched as I put the key in the hole, turned, open the lock, opened the latch and open the box. I picked up his toy car he had brought with him and placed it in the box. I shut the lid, flipped down the latch, and put the lock back on. “Listen” I said as I clamped the lock down.  We listened.  It produced an audible “click”. Matt watched the whole sequence. His car was now in that box and the box was locked. I handed him the key. Matt put the key in the hole, turned it, open the lock and removed it, flipped the latch and opened the box to reveal his beloved possession still intact. A wonderful smile lit up his face. He was genuinely relieved and now fascinated by the lock and key. “See?” I said to the therapist. She looked at me as if I had just spit on her. “He was not able to do it without you showing him . . . “ she trailed off. She never changed her grade sheet. Matt had low scores from her and high scores from each of the other 3 therapists. This first visit back had really gotten under my skin. I was ready to use the sign language, but I was unwilling to accept that Matt lacked thinking skills. I became aware that people would judge my son on his ability using particular tests that were unintentionally misleading. People would always use his diagnosis to assume Matt was mentally incapable of learning – that is unless I made it a point to teach them differently. It was during this same year that Matt learned the alphabet without anyone knowing. I practiced the alphabet on the glass of the back door – writing in the frost. The first few weeks Matt just scraped frost onto his fingers, fascinated by the cold of the door. At school the class went over the alphabet each morning. Matt would dive under a table and put his hands to his ears as everyone did the alphabet together. His teachers assumed Matt was off in his own little world, refusing to pay attention. His teachers soon found they had made a false assumption. Matt was listening and using his split-second glances at the board to connect the letter with its name. Matt was under the table yes, but he was learning. Within weeks Matt was writing the alphabet in the frost and writing the alphabet on paper in school. His repertoire of words seemed to jump from 4 to 20 - 30 in no time at all. Matt’s brain was healing and he was beginning to show us signs that he was capable of making connections again, both figuratively and literally. He began to speak more and more. I was finally sure – absolutely positive – that he would eventually use sentences to communicate and so, I stopped using sign-language – that is except for “I love you”. To this day, 20 years later, we give the sign for “I love you” whenever we part, whenever we say good-bye, and sometimes just for the heck of it. It has become a symbol with a much deeper meaning. Each of our children knows the sign and has used it, but for Tom, Matt and I, it is part of our everyday language and behavior. A few days ago we again hiked another section of the New River Trail. Each of us had in earbuds listening to our own musical preferences on our MP3 players. I was out ahead and looked back to find Tom taking pictures – he was quite a ways back. Matt looked at me, then at Tom, then back to me and shrugged his shoulders. I held my hand up indicating stop and wait – Matt stopped. He looked again at Tom and back to me with a big smile and flashed me an “I love you”. Not a word needed to be spoken.

  • Mother's Day Moments

    Story 72 Another Mother’s day has come and gone.  The kids have been kind to me.  I got flowers and cards and saw each one at some point over the weekend.  As I think back about all those previous Mother’s Day tokens of affection I think of the gifts and cards and dinners and phone calls. It’s nice having a day that reminds the offspring to call their mother. This year Tom, Matt and I went out to buy flowers at my favorite store – Lowe’s.  As we strolled down one plant –lined aisle after another I found myself ooing and awing at the grasses, the bushes, and the bedding plants. I picked out an especially pretty rhododendron with deep pink flowers.  Matt watched Tom pick the healthiest of plants and then lift it onto a cart. Matt decided he would buy me flowers also.  “Do you want me to pick them out or do you want to do it?” I asked.  Matt has a history of stressing out when picking out gifts, preferring the receiver choose for him.  Yet, for the past several years Matt has really gotten into choosing for himself.  “I’ll do it.” He replied confidently.  I walked off in the opposite direction to give him time to think and decide on his own. I was admiring the ornamental grasses when Matt returned with an entire tray of plants.  The petunias I recognized right away. Petunias are Tom’s favorite flower and we buy them each spring for our deck.  The others were zinnias – a flower I have never had in a garden.  These were red and white and looked like sunbursts. “Oh, these are beautiful, thanks Matt”. His shoulders went back a bit, his head raised higher – Matt was obviously proud of his selection. I transplanted the flowers into pots that afternoon.  I thought about Matt’s choice and admired my new zinnias. But something was bothering me. Matt always drew me a picture for Mother’s Day.  For as long as I can remember there has been a drawing – usually a cartoon of some sort – that has accompanied the card from Matt.  He always writes “happy mother’sday”, the date and a “love Matt” as his signature on each and every drawing he has given me.  I have collected them for almost 20 years and now I was receiving flowers instead.  Don’t get me wrong, I love my flowers, I love that Matt picked them out, and I especially love that they were a flower I had never had before, but it just didn’t feel like Mother’s Day without a cartoon from Matt. Months earlier I had asked Matt what he was going to draw for me for this year’s Mother’s Day.  It came up as he was planning his summer events on the calendar. He looked at me and shrugged his shoulders – his way of asking me for a hint.  I looked up and on his wall he has a picture he took in his photography course of one of our cats.  “I would like a drawing of Toulouse”. He smiled and gave me a thumbs-up. We continued to talk about the coming summer and plans for each special day up to August. Now Mother’s Day had arrived and there was no drawing.  Had Matt forgotten?  Really?  Matt never forgets anything like that.  I was a bit disquieted by the whole thing.  Of course, I never let on to my curiosity or my disappointment and kept it to myself all day. The weekend got busier and the other kids either stopped by or called.  We all had a wonderful time just enjoying each other’s company.  Before I knew it, it was getting dark and I was wearing down. Exhausted, I decided to hit the hay early – around 9:30pm.  I stopped by Matt’s room on my way to bed to give him a kiss goodnight.  He met me at the door.  I was so tired that I didn’t even notice he had something behind his back.  He gave me a wonderfully strong hug and immediately handed me the paper he had hidden behind him.  It was a cartoon drawing, completely colored, of Toulouse.  Written on the bottom was “happy mother’s day”, the date, and just below it, “love, Matt”.  Best gift of the day.

  • Adventures in SOLs

    First, let me say I hate standardized testing.  It hasn’t turned out to be the cure-all for education that people envisioned.  In Virginia, the standardized tests are called SOLs – I kid you not.  No, SOL does not mean what you think.  It stands for Standards of Learning.  Not one good teacher actually thinks they are helpful – mostly they are considered to be a cruel slap in the face to true learning.  Students only learn how to take a standardized test – not think. They must be taught only what is on the test and when they get to college they lack study skills and desire to learn.  Students feel the instructor should only present them with what’s going to be on the exam.  So in other words, students are taught to memorize certain facts which are then easily discarded as soon as the test is over.  Learning to actually think has now become the sole job of higher education. Having said my piece about the sad content of SOLs I will now tell you about Matt’s adventures in standardized testing.  They start testing early on – in elementary school.  Matt took each standardized test along with his classmates.  They made him a wreck.  He couldn’t sleep and cried and begged not to go to school.  Yet, year after tortuous year he passed each exam. Matt has a great memory for facts. SOLs do not require any thinking skills – just the ability to memorizeand Matt could memorize just fine.  Matt did well in each subject; Math, History, Science, Reading. English was Matt’s worst subject. Of course!  He is autistic and autism is a communication disorder. English is how we communicate. It was fully expected that he would have difficulty in written communication. Matt’s writing skills improved each year, but let’s face it, he wasn’t a great writer – he’s autistic.  He never saw the need for the little words; it, is, of, at, the, etc.  Leaving out the little “useless” words always affected his grade.  The only class Matt ever took in High School where he didn’t make an “A” was English – he got a“B”.  He could read, he could do his homework and he could write- albeit, not as perfect as we would like, but well enough to make a point and demonstrate knowledge. To graduate with a regular diploma, Matt needed to pass all of his SOLs – including English.  The English SOL has 2 parts; one covers the parts of speech, spelling and grammar –which is multiple-choice, and the other one covers actual writing skills –students are given a writing-prompt and instructed to write several paragraphs on the subject.  Matt flew through the multiple choice with no problems.  He made an excellent score on that half of the test.  His writing, however, was not very good (those pesky little useless words!).  The overall score is an average of the two tests together.  A student needs a 400 to pass.  Matt received a score of 378.  This was in his junior year of highschool.  He could re-take the test again in his senior year. You can bet it was an intense meeting of the minds that spring as we came together for Matt’s last IEP. Some were convinced he would not pass and started throwing around the idea of a Certificate of Attendance in lieu of a Regular Diploma – it didn’t go over well with me.  I immediately took that idea off the table.  Matt had not worked that hard, received all those excellent grades, repeatedly made the honor-roll year after year to end up with a lousy Certificate.  Once that was cleared up we began to construct an IEP that focused heavily on Matt’s writing skills. Test time came all too soon in the fall of his senior year.  His score for his second attempt was 398 – Damn!  He missed passing by 2 lousy points.  This was really beginning to get under my skin.  How could they prevent my son from walking across that graduation stage simply because his writing skills – his communication skills – are slightly diminished because of his disability?  It’s like saying that because he is autistic, he can’t graduate. I called the ACLU. The ACLU works to stop such injustices.  They took up the case and began giving me ideas on how to get the SOL for writing waived. The Virginia SOLs have a back-up for English.  Students can submit a portfolio of their writing – from several years of classes – and be scored that way.  Oops. Who kept writing samples for the last few years?  Where was this rule when we were discussing Matt’s performance at the IEP?  A portfolio was a great idea, but we didn’t have the required materials for the year.  It was now spring and graduation was looming.  Matt had one more opportunity to take and pass the writing portion and the test date was almost upon us.  I was a wreck.  The Virginia Department of Education was holding their breath, Matt’s teachers were pushing him hard, and his aide wascompletely stressed out.  The ACLU was waiting for the results – would we be going to court to fight this requirement on the behalf of autistic children?  Matt was also a wreck.  He begged not to go to school.  I told him this was the last time I would ever make him take this exam. I told him that I knew, his daddy knew, and his brothers and sister knew that he was intelligent and wonderful and no test in the world would ever change how we felt.  Matt grudgingly took the English SOL writing section for the last time. We had to wait a month for the results.  Graduation was just weeks away and we were on pins and needles.  Then the news came –both written in his notebook and by phone; Matt had gotten a score of exactly 400.  Talk about a celebration!  Oh my, what a relief.  There may not have been dancing in the streets, but there sure was a lot of dancing (and jumping and high-fives) at our house!  His teachers smiled again,his aide could breathe again, the ACLU closed the file and I imagine the entire Virginia Department of Education probably went out to slam back a few to celebrate their good fortune. The following weeks were filled with awards banquets and Matt was honored at each.  Academic Letter, Honor-Roll, number 4 in his class (GPA = 3.81), Who’s Who Among High School Students and the National Honor Society. It was one celebration after another. Finally, the long anticipated graduation day arrived.  On a hot spring morning our family gathered together to witness the impossible.  My son, my beautiful baby boy who I was told would never be able to do anything, who I should put in a home because autism would be more than I or my family could handle, marched into the packed gymnasium along with his classmates.  He sat next to his best friend and we could see them smiling and conversing.  Then,his entire row stood up and marched toward the stage. I held my breath as I watched, tears in my eyes, as my son, now a young man, walked toward the stage, head held high, honor-cords around his neck, stepped on stage and shook hands with the principal as his name was read. And there, for the entire world to witness, a true high school diploma was placed in his hands.

  • Not all those who wander are lost - sometimes they're just autistic

    Recently I came across a bracelet in a magazine with this quote: “Not all those who wander are lost – J.R.R. Tolkien”.  It has stuck in my mind for days.  I have seen this quote many times before but for some reason this time it really hit home. My first thought was, “That’s right, some are just autistic!” When Matt was young he used to wander.  It would happen when we were in a group of people such as a family gathering or at Cub Scouts.  If we were outside then Matt would slowly walk to the periphery and circle us.  He kept track of where we were with quick glances out of the corners of his eyes.  If we were indoors, Matt would walk from room to room until he found one void of people, bright lights and noise.  There he would occupy himself with a simple activity such as practicing expressions with his reflection in a window. He was never out of ear shot.  Yes, Matt wandered, but he was not lost. Twenty years ago the professionals of the time told me this type of activity was because Matt was in his own little world, oblivious to the real world around him.  Nothing could be further from the truth.  Matt was choosing to be at a distance, sure, but not because he didn’t know we were there or didn’t think about our activity. Matt watched us in his subtle way, with quick eye flashes from the corner of his eyes, and he listened to us from a distance his ears could tolerate.  The distance was determined by the loudness of our group.  Matt’s sensitivity to bright lights and loud sounds was very challenging for him at family gatherings and special events consisting of 6 or more people.  Heck, it can get too much for me sometimes and I don’t have hypersensitivity for any of my 5 senses. What most people didn’t realize was that Matt was learning the entire time.  He was deciphering facial expressions, body language and various inflections and tones of the many voices.  He listened to our laughter and a small smile would appear.  His hands slowly twisted this way and that as he strolled.  The slow twist meant he was comfortable . ..  and curious.  If he weren’t comfortable he would have screamed and his hands would’ve flapped much faster. If he were not curious he would walk further away and I would have to retrieve him.  There were several social gatherings where Matt kept flashing his eyes our direction and circling with no outward sign of distress.  These were the times when he was truly wandering. The aloof nature of autism leads to many misconceptions about the mind of individuals on the spectrum. Labeled as “being in a world of their own” is one of the absolute worst.  Difficulty with communication and social interaction does not mean one is alien. Lack of eye contact does not mean they can’t see.  Wandering does not mean they are lost. Twenty years ago the label suggested that the child was in a world different than ours and therefore unreachable.  The team of doctors on the day of Matt’sdiagnosis suggested we institutionalize him. This was based purely upon the false assumption of inaccessibility to his mind.  In their eyes he would be un-teachable because his mind would never grab the reality of his environment.  I knew this was fictitious.  I had watched Matt flash his eyes toward me – and smile.  He knew we were here – on the same planet, in the same world – together.  He knew.  Matt was not unreachable. The lack of eye-contact was a misnomer also.  A lack of eye contact, really?  Matt watched everyone around him.  He knew what was going on even if he couldn’t understand it. He couldn’t look directly into my eyes for very long, as if to do so would cause him immense pain, but he could catch my eyes for brief moments during quick glances.  Each connection, each direct hit of eyes to eyes, was like a moment of clarity.  When our eyes connected we shared volumes of emotion and understanding.  When my older son shared eye contact it was this way too, and he does not have autism. The difference is that with my neurotypical son it happened so often and held so long that we took it instride.  It was natural.  Conversely, with Matt the eye contact happened so few and far between and for such a short moment, that each contact packed a bigger punch.  It’s hard to describe to someone who doesn’t have an autistic child, but I bet all the parents of a child with autism understand this very well. Wandering doesn’t have to mean lost, either.  What may seem like a path to no-where may actually be a fact-finding mission done from the periphery of a group.  I do not see my autistic son as lost.  He never was.  He had trouble with communication and understanding of what was going on all around him, but together we conquer those hurdles.  Wandering was just his unique way to absorb and process all of the information thrown at him, at a rate conducive to his pace of learning. The more he learned the less he needed to wander.  Matt is young man now.  When we go for strolls and hikes and interact with the wonders of nature we leisurely wander together. Not all those who wander are lost – sometimes they’re just autistic.  I think I might buy that bracelet.

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