Matt just attended the Labor Day Flea Market.  He just walked about, seeking just  the right find . . . just another bargain hunter in a sea of people that stretched from one end of town to the other . . . just one person of the 500,000 people who attended this year’s event . . . except, there was no “just” in any of it. Matt is 27 and moderate to severely autistic and mostly non-verbal.  And yet, he walked alone.  He bought some items that made him happy.  He blended in.  No one knew and no one needed to.  Matt was able to experience independence like never before. Just another day at the flea market - except it wasn't. Many people think autism is a just a communication and social interaction disorder.  For those individuals like my son Matt, autism is so much more than that.  Matt was diagnosed with autism so severe the professionals recommended institutionalization.  Basically, he was thought to be beyond my reach.  Little did his doctors realize just what this mom can do when she is put in such a position (one that many parents like me now know all too well) or about the indomitable spirit of those afflicted with autism. Over the years I knew his difficulties in social interaction arose out of his difficulties in communication - after all, one affects the other.  When my son, Matt, was just a toddler he kept to himself and never spoke a word but over the years I learned his non-verbal  language and he learned mine.  In the early years Matt feared even small gatherings of people.  He maintained a personal space that was much larger than most people’s, had melt downs, and cried when it got to be too much – but we never stopped trying. Little by little, year by year,  Matt accepted more and more people into his inner circle and even began to enjoy  their company.  There were always sporting events, picnics, fairs and flea markets – each which garnered large gatherings of people and year by year Matt was exposed to all of them. One event, the annual Labor Day Flea-Market, held in my husband’s home town of Hillsville, brought a massive sea of people together. They came from all over - vendor and bargain hunter alike - and it swelled over the years to encompass the entire town. The flea market has always been a big event for our small family and in spite of the crowds we took Matt.  We were mindful of his discomfort in those early years and usually carried him through the crowds on our backs or shoulders.  Matt eventually grew too heavy for carrying on my back and at some point he had to walk along side me holding my hand.  To entice him to go without a fuss we would bribe him with the promise of buying him a train and our entire family group kept an eye out for anything railroad related that could bring a smile to my youngest son’s face - anything to make the overwhelming nature of the flea market worth the over-stimulation. Year after year we went until one year we noticed Matt was eager to go. It just got better from there. We’ve been going to the Labor Day Flea Market now for over 20 years.  The week before this year's gathering I asked Matt if he would like to walk the flea market on his own – he beamed.  He could barely believe it.  This would be the year that he was finally allowed to walk alone, shop alone, go where he wanted to go, and just blend in.  That feeling of freedom must have been immense. I knew in my gut it was time and that he was ready.  I knew because I had prepared him for such things.  Matt had experienced shopping in stores alone for years now.  He goes one direction as I go another and when it comes time to go I call him on his cell phone. He also has experience purchasing items by himself, be it food or music, toys or clothes.  And Matt was excellent about knowing where he was at all times – as if he carried a map in his head (I am convinced my son has built in GPS). So I knew my son was ready because of practice – years and years of practice. The big question really, was I?  Was I ready to let go - even for 90 minutes - in a crowd so large? My son is also a man now.  A man that will soon live on his own – something unheard of in the autism community for someone on the moderate / severe end of the spectrum. It’s been a long awaited goal, practiced for since long before his high school graduation.  His determination drove my determination and together we knew he was ready to experience independence.  His name is currently on the waiting list for an apartment and we are just waiting for THE CALL - the call that will initiated the biggest move of my son’s life . . . and of mine. It’s been an exciting and yet scary year (exciting for Matt, scary for me). So yes, I knew Matt could walk the flea market alone (or I never would have asked him if he wanted to) because I knew in my heart he could.  But that does not mean I wasn’t scared.  Sometimes, this mom just needs to let go and have some faith.  This was one of those times. All summer long Matt reminded me how many days until the flea market on Labor Day weekend.  When I announced last week that he could walk it on his own his joy was overflowing.  To prepare him for the big day I took him shopping to buy him a new watch. Then we made sure his cell phone was charged.  Finally, we set a plan in motion of when to meet, how often to call, what to do if someone was mean to him (call me or get a cop).  I handed him his allowance for the day and off we went on a new and exciting adventure. Our first stop was to see grandma, who was recovering from surgery in a rehab center one town over from the flea market.  Unfortunately, while visiting her a severe storm warning came across the news and the skies turned black.  The rain fell in buckets and the wind bent trees just outside grandma’s window.  My heart sank.  I looked at Matt.  His heart was sinking too. My step daughter, Sarah, and her husband Paul had stopped by also.  Paul pulled out his smart phone and looked up the weather map.  Matt leaned in to examine the situation.  When we left I tried to convince my son it would be OK to go another day, but he wasn’t buying it.  As we drove out of town the rain lessened and Matt pointed skyward and exclaimed, “It’s going away!” “But another storm is coming, Matt.  You saw it on Paul’s phone, remember?”  I replied. “I see a fragment of blue!” he exclaimed and put his thumb and forefinger an inch apart as a measure of the blue and then thrust his measured hope at my face exclaiming, “A fragment!” “But what if it rains while we are there?”  I asked tentatively. “Duh . . . umbrella!” He said disgustedly. OK, so I had an umbrella in the back of the jeep. With each mile I drove toward home (and away from the flea market) Matt’s frustration escalated.  His frustration could not be contained a second longer and suddenly he smacked his thigh 4 times with the palm of his hand- pop, pop, pop, pop. Those pops meant his hopes of going it alone at the flea market were being dashed – and I was the cause. What was wrong with me?  Was I avoiding it for other reasons?  Was I …. Scared?   Shouldn’t I at least try to be as brave as my son? I pulled into a driveway and turned the jeep around.  “I would only do this for you I’ll have you know…” I teased as we headed back toward the town of Hillsville and the hope of the massive flea market.  I looked over and smiled.  “We will at least give it a try, Matt.”  With that statement came the resurgence of hope - his face re-lit with determination, and his eyes became bright once more. The traffic headed towards town was light but the traffic headed out was bumper to bumper.  Most shoppers were leaving, not wanting to bargain hunt in the rain.  We always park in the center of town and while I easily found a place to park (because so many people had left), it had still taken us almost an hour to finally get to that spot – 45 minutes waiting in town traffic and yet his face never shown of worry or frustration – only hope.  As soon as I cut the engine off, Matt grabbed the umbrella and jumped out.  We proceeded down the hill toward the first set of booths.  His step was so quick that I found myself trying to keep up with his strides.  Excitement permeated the air around him. “Check your watch. Call me in 30 minutes, OK?  Check your cell phone.  Let’s do a check.  Call me.” I asked, as if all was great and it was just another, normal day. As if.... “OK.” He replied as he took out his phone and pressed the buttons.  My phone rang.  I opened it, “Hello?” “Hi!” he exclaimed into his phone even though we stood next to each other. “OK, we’re good. Call me at 5pm and let me know where you are, please.” I said. “Uh, Ok.” He replied. “Bye, Matt.  Have a great time.” I said looking into his bright eyes. “Bye!”  Matt replied as he gave me a fist bump, turned and walked away  - and my heart stopped. What if?  Nope – get those “what ifs” out of your head, Liz. I reprimanded myself, turned and forced my legs to walk in the opposite direction.  For 15 minutes I strolled from booth to booth trying to look at various items but not really looking at anything at all.  I was too busy forcing myself to just keep going.  I rounded a corner, looked up and there he was, only 30 yards away. He looked right at me, smiled, waved excitedly, then turned and walked away once more. Believe it or not, that was all it took to calm me down – just seeing his face, reading his body language.  Matt was just fine. It was exactly what I needed to see - my 27 year old autistic son blending in with the massive crowd, confident, happy and living a dream.  I strolled off again in a different direction, more confident and more at ease. I set to really looking at things and examining items that were appealing and I started to relax. At 5 minutes before his first call was due my phone rang.  It was my husband.  “How’s it going?” he asked immediately.  Seems he was just as nervous as I had been 10 minutes earlier.  We talked a few minutes but I knew Matt would call exactly at 5pm and we kept the conversation short.  I hung up and strolled on.  At exactly 5pm Matt rang my cell phone. “Hello.”  I said with a happy voice as if nothing out of the ordinary was occurring.  I heard “Hello!” in an even happier voice in return. “Where are you?” I asked. “I’m at the Jockey Lot”, he replied. Great!  He knew his landmarks and I felt better knowing his internal GPS was working just fine.  We made plans to call again in 30 minutes. Thirty minutes later I again got my much needed call and we planned to meet up at the top of the hill in 30 minutes more.  I made record time to the top and then suffered the wait as I searched the sea of humanity for the light colored Virginia Tech hat he always wore. When I spotted him I noted that he was in search mode, looking this way and that, trying to spot my face.  I called out and waved.  He glanced in my direction and his face immediately changed from one of worry to one of sheer joy.  My heart began to beat once more. We walked together a while, ate some ice cream and slowly strolled back down the hill toward the car, walking side by side.  He stopped only once to show me a sign for comic books and I said I would help him find it the next day.  Finally, the jeep was in sight. We both let out a sigh of relief.  I opened the trunk to put in our bags and as I set my bag down Matt looked at me and asked, “What did you get?” I stood stunned for only a moment and then told him of the blue shawl with fringe as I pulled it from the bag to display it.  “That’s really cool!” he said as he put his own bags in the trunk next to mine.  Matt had NEVER asked me what I purchased before. Not ever.  His curiosity was as genuine as his approval.  As I walked to the driver’s side door I had to fight back a happy dance (with happy tears). Matt had just asked me about something important to me…..unexpected and out of the blue.  He had just initiated a conversation!  This was so much more than just a walk around the flea market. So, in all, Matt had spent 90 minutes on his own in the largest gathering I could have possibly subjected him to.  He did so confidently.  He knew his way around, purchased some items,and strolled as a free and independent young adult.  He blended in and got to feel “normal”.  My son is 27 years old and he deserves the right to feel just as free as any other 27 year old.  His 90 minutes on his own must have felt like heaven.   He was so relaxed and so calm upon our return to the car that he even verbally initiated a conversation (first ever).  Matt doesn’t initiate conversations – at least he didn’t until that moment. I can never say that phrase again..... The hurdles we face as parents of an autistic child seem never ending and maybe they are – but as his mom I say, “so what?”  I have learned to jump the hurdles with my son and now we tackle them almost effortlessly – almost.  We may plan for the big hurdles but we focus on the small ones right in front of us – because we know if we can jump those, we can get there – we can jump anything. On Labor Day two hurdles were cleared; he was able to prove to himself that he could function well in a crowd all on his own and he initiated a conversation with me without prompting. I would say it was a very successful day. We are very hopeful for Matt’s future.  I have learned to “just” breathe. “Just” relax – knowing that I can do this - whatever this is. It “just” takes practice.  When one thing doesn’t work, I “just” try something new.  And slowly over the years I have learned to “just” let go– bit by bit.   After all, it’s “just” autism. And there’s no “just” in any of it.

This is part 2 of the story “Non-verbal communication and the whispered secret”. Today was the big day – the day we would go in search of the Books-a-million (BAM) store in Bristol.  Matt had expressed his immense desire to find this particular store in an excited whisper that told me just in the sheer expressiveness of his body language that this specific store held something immensely powerful for him.  Today was the day the wish, the desire and the longing would all be fulfilled.  Today his secret would see the light of day. Matt had gone to bed early last night – a very difficult change to his night-owl routine.  He knew we would be leaving at 9am and therefore going to bed at his usual time ( 7am)  was not a good idea.  We made a plan.  He would get up early the day before so he could be tired enough to go to bed early later that night.  I hoped he would get at least a few hours sleep.  Amazingly, Matt willingly changed his own routine and was in bed early (12 midnight), a whole 7 hours earlier than normal.  Unfortunately his excitement hindered his wish for sleep and he only managed a few hours before rising at 7am. That’s when he jumped out of bed, got dressed, put his hat on, put his wallet and camera in his pockets and grabbed one of his favorite Van Halen CDs for the travel music. I caught him coming down the hallway and reminded him to brush his teeth.  He set his CD down and headed straight toward the bathroom – mumbling, “OK, one last thing before we hit the road”.  His desired trip just minutes from becoming a reality had ramped up his outer monologue - it was continuous.  The “outer monologue” is what I call Matt speaking his thoughts to himself out-loud, something he has done most of his verbal life. When he is excited the words pour forth, in private and to himself.  How I wish he could speak to me as well as he can to himself!  Although I wish for more I am grateful for what I do have.  I know so much about my son simply because I have learned to listen to his outer monologues discreetly from another room.  They have given me insight into areas of my child’s thoughts I would not otherwise know of.  This morning his outer monologue continued on even with the toothbrush humming and with a mouth full of foam – a sign that his excitement could not be contained even for a few minutes. I wish I knew what he had said but the foam impeded the clarity of his voice and I was left not knowing the gist of the conversation, only that he said it excitedly. Finally, everyone was ready and we headed out the door and toward Tom’s car.  Matt was so light on his feet he was floating, the smile on his face stretching from ear to ear.  That beautiful smile never dimmed during the entire 1.5 hour trip to Bristol.  In addition, he sang with his favorite Van Halen songs, laughed, and excitedly counted the mile-markers on the interstate.  The closer we got the more excited his voice.  He spotted our exit and immediately sat up straighter and stared out the window as if he were trying to force the BAM store to come into view by sheer will power.  There it was!  Hurray! And then as we pulled into that magical parking lot I heard him exclaim, “Dream come true – since coming home on my birthday from Montgomery, Alabama!” What?  That was January of 2011!  OMG!  Has Matt been thinking of this trip for over 2 years?  I was astonished.  “Matt, do you mean you have wanted to come here since 2011?”  I asked.  “Yes!” he replied. He popped out of the car as soon as it stopped, leaving me to wonder why he could not tell me sooner.  What magical draw did this particular store have on my son? Matt headed for the door.  He paused, knowing we wanted a picture first, turned and smiled for the camera,then hurriedly entered the store.  He took only a few seconds to get his bearings and then proceeded down the aisle as a man on a mission.  Not wanting to hover, Tom and I went to get coffee.  With hot coffee in hand we leisurely strode in the direction Matt was last seen taking and found him in the comic-book section. Upon seeing us he exclaimed, “Mission Accomplished!” and held out his arms.  In each hand was a book - I recognized the cover art for each immediately. His favorite animation characters graced their covers – Rurouni Kenshin (Manga series, volumes 8 and 9).   That is when we finally learned the story behind the desire of the whispered secret. Matt talked a mile a minute, leaving words out, mispronouncing a few more in his rush to release the long awaited information, and this is what I learned: 1.  The BAM store closest to us in Blacksburg closed in 2011.  Matt had read about the closing in a newspaper at his grandma’s house that same year. 2. On the way back from Montgomery, Alabama, where he had been on an adventure with Tom (Tom’s work assignment was for 13 weeks and Matt had gone for the last 4 weeks), Matt had seen the sign for BAM at the Bristol exit #1. 3.  Matt’s favorite store was Barnes and Noble where he bought his favorite animation books, volumes 1-7.  They did not have volumes 8 or 9 – the last 2 in the sequence.  Each time we had gone he searched for them.  He realized that he would not be able to complete the set by shopping at Barnes and Noble. 4.  Last summer Matt had seen a BAM tractor-trailer headed for Bristol. He knew his best chance to complete the set was to go to BAM.  He remembered there was one in Bristol - exit #1. 5.  Wanting to go but unable to convey the information to me, Matt was stuck with a desire and a need and no way to fix the problem.  His communication deficit – bringing up a topic, asking a question, saying what was on his mind, all prevented him from conveying these things to me.  Matt held a secret because he had no choice. 6.  A few months ago his thoughts-to-words neural highway unblocked long enough to allow a glimpse of his desire to come rushing out in a whispered secret to me on our way to town. There’s more.  I learned something too.  I learned that Matt can push himself to tell me something he needs me to know - that it isn’t impossible.  I heard an entire explanation today.  I pieced together his statements, reiterated them back to Matt and asked if they were correct.  He corrected a few points I had gotten backwards and when I had it correct, he smiled real big and said, “Yes!” like I was his favorite pupil ever! With our mission accomplished we headed out toward more shopping and lunch and I thought about what I had learned today.  I turned and looked at Matt.  “You will need to do this more often when you live on your own, Matt.  You will need to say, ‘Mama, I want to go to the store, I want to go shopping.  I need to get something’ so you will need to keep practicing this.”  Matt took only a second to digest this information, then looked at me and said, “Mama, I need to go shopping.” “Excellent practice, Matt!” I replied.  Matt’s face beamed with pride. He will practice – we will practice.  The words will come.  It will get easier – for both of us.  I won’t need to wonder constantly and he won’t need to hold it all in.  It’s a great goal - a goal that I had thought so much about over the years.  We have such a unique way of communicating, using body language, facial expressions, behaviors and nuances and it has worked well but I have known all along he needs more. Our communication had gotten to be so ingrained that I had to force myself to start asking him questions I already knew the answer to just to get him to practice speaking.  Now I realize that this strategy has worked.  This wonderful young man has thoughts he would like to share if he could just find the right road on the thoughts-to-words neural highway.  He has road blocks and obstacles on that road that still need clearing away – but it is something we can do together, slowly, and we can improve as we continue to practice. It’s scary being a mom of an autistic child because I know it’s all on me to be the best teacher and mentor I can possibly be to this wonderful son of mine.  Today I was blessed to witness the result of all those years of prodding him to speak, to answer questions, and to share himself with me as best he can and I feel victorious! All those days of asking the same questions - “What are you thinking about, Matt?”  “We’re going shopping today Matt- what do you need?” the kinds of questions that forced him to complete a sentence, express an emotion, and think about the immediate future.  I must have asked those 2 particular questions thousands upon thousands of times over the years. I realized today, just this minute, that it was all that practice that allowed Matt to whisper a secret months ago, and to explain to me today about why he needed to go, what he was looking for, and how long he had been thinking about it. So maybe, just maybe, there will come a day when my son will not be "mostly non-verbal".  Maybe, just maybe, all that practice will pay-off like the lottery – speaking on a daily basis and me watching communication get easier for my son.  But for today I feel tremendously blessed as I shared in his joy, learned the mystery behind the whispered secret and found myself hopeful for a future where the words will come exactly when he needs them too.

Where’s the research involving parents of adult children with moderate to severe autism? Autism is skyrocketing. The numbers of children diagnosed just keeps climbing year after year.  In 1988 the chances of having a child with autism was 1:10,000.  I know this because that is the year my son Matt was diagnosed.  It took an entire team of medical professionals and a full week at the Kluge Children’s Hospital to come to that conclusion.  The head of the team explained to us it was a rare condition, with no cure and no treatment – except institutionalization. The estimates now, in 2013, range from 1:88 to 1:36, depending on which study you read. Treatments and drugs are popping up everywhere – some seem to work well, others seem to be more of a money making scam than anything else.  Parents today are sifting through a mountain of information trying to find something that could work for their own unique child with an ASD label.  In searching the Internet you find studies on young children, teenage children and even young mildly autistic adults. The interviews on someone who is mildly autistic are fascinating - as they can explain what it is like, how they perceive the world and these types of interviews bring much needed insight to understanding the overall syndrome.  Yet, I do not find any research where their parents were interviewed...... As I search I have found that most research involves the very young, those with the classic behaviors that suggest autism –the behaviors that brought their parents to seek out a doctor’s diagnosis in the first place.  Behaviors, that parents of adult children know to be transient – they don’t last forever.  The autistic child grows, learns and finds new ways to overcome the challenges set before them – and young parents are quick to assume it is the current therapy or the current drug.  What if it isn’t?  What if their child is just ... growing up?  Parents would be able to tell the difference if more research studies involved the parents of adult children on the spectrum – those from the first early waves of the current epidemic.  Unfortunately, one rarely ever sees that kind of study  - a wealth of information untapped. Maybe I am not being clear.  I’m not talking about blogs. I have one of those blogs myself (World According to Matt).  You know…. a place where I can write about the hurdles, the joys, the insights, the heartbreaks and the remarkable progress of my own son with autism.  Matt is 27.  We have been navigating autism for 25 years.  I readily put our entire story out there to help those in the early stages to those with autistic children about to become adults.  There are other blogs out there, I'm sure, but that is not what I am trying to push here.  What I am trying to push here is for researchers to tap into the enormous amount of information out there from thousands of parents of adult children.  Think about it.  You really want to know about autism?  Shouldn’t you know about the entire life span?  Most studies are on toddler to school age autism behaviors because the majority of autistic children are in that age group.  That means that science is missing out on at least 2/3 of the entire story.  There’s a wealth of knowledge out there isn't being tapped by those individuals and institutions who claim to be professional researchers in the autism field - on the cutting edge (ha!).  So why does no one look into it?  Isn’t it just common sense to document all the various stages of autism?  A lifetime's worth? Maybe I am complaining too much, but come on, let’s get real here.  Who knows more about the stages from childhood to adult for an individual with autism more than the person who watched it every single day for 20-30 years? Who else could tell you what hurdles are ahead?  Who else could explain how to help someone who is non-verbal, and moderate to severely autistic to still have a great life?  Who could give you a more honest answer to what may work and what may not work in overcoming communication and socialization difficulties?  Seems to me there must be hundreds of thousands of parents of adult autistic individuals out there.  Why are their stories, their insights, their anguish and their inspiring stories of raising their child not considered in the arena of medical research? Who else can speak for those who literally have no voice? This all hit me as I watched another documentary on WWII.  I had just seen one on the terrifing events of the tsunami, and one on earthquakes and tornadoes.  All theses documentaries had one thing in common - interviews of those who have lived through the event.  Their stories captured for all time.  That wealth of information is available and can be used by any scientist who researches various aspects of these events - even after the interviewees are long gone from this earth.  There are medical archives filled with the first hand knowledge of various diseases that scientist still use.  But there are only a few stories about individuals with autism.  Very few, (if any stories) about someone with moderate to severe autism living on their own – not institutionalized.  How do they live as adults?  What are the hurdles?  I want to know because my son is about to go on his own and I would love to know if someone else out there has a success story I could read. I want numbers and statistics.  I want probabilities and what the data says I should strive for.  Instead, I go it alone.  I rely on my gut and my own ability to read my son.  There's nothing out there for us to read-up on.  I am sure that will change as the youngest members with autism grow up.  I am sure science will eventually catch up.  They'll do their research based on these kids - and lose all that information on a generation that never took one pill or used one new therapy.  The older generation dealing with autism is the perfect control group - don't they see that? If the children of the first few ripples of autism are now entering their 30s to 50s, think of the parent’s ages.  Many will be gone soon, their stories untold.  All that information on a syndrome that still, to this very day, has no definitive cause or cure, is slowly slipping away.  And the numbers of children diagnosed each year continues to rise. All these children will grow up in just a decade from now. They will become adults.  Will the research on how to accomplish the goal of serving the moderate to severely autistic adult wait until thousands upon thousands of them slip through the cracks of the current inadequate safety nets? Come on Harvard, Duke, Stanford, Yale and other top notch research institutions, get with the program already.  Start interviewing, cataloging, and investigating the experiences of those parents who have traveled the autism road long before it was road – back in the day when it was still just a dirt foot path (full of weeds, and all uphill).  Think how much could be learned – all of us, if we could ask those who provided for their autistic child without the help of therapies, drugs, and support groups how they did it?  What did they all have in common?  What was the one thing they found that no one else seems to know….yet?  Inquiring minds like mine want to know.

Did I just hear that correctly?  Did they just say what I thought they said?  That was my first, initial thought, which was soon followed by,  "Oh my gosh, what have they done?"  I am referring to the reports that were streaming out of news networks about the Newtown, CT shooter being on the autism spectrum.  No verification has yet to emerge that it was even an accurate report – but that made no difference to the reporters as they all tried desperately to shed light on why the shooter targeted little children.  Everyone in the media seemed to want to be the first to have the scoop – and it didn’t matter that it was (and still is) just a rumor, and not verifiable. There was no official diagnosis during his childhood. Their “experts” were people from the community that assumed his aloofness made him autistic.  I was already saddened by this awful tragedy, trying desperately to imagine how painful it must be for those parents, first responders and teachers at Sandy Hook Elementary School. And then, just when I thought it couldn’t get any worse, the story took a terrible turn – a rumor of a connection between autism and planned violence.  I started to cry. For the next few days I was numb – not sure what to say or how to say it.  I had spent 25 years spreading autism awareness and in a heartbeat all that I had tried to accomplish toward it seemed to fade away as one comment after another portrayed autism (specifically Asperger’s) as dangerous, violent and unacceptable.  Misleading the public, the news spread fast across the autism community.  Within 24hours of the “breaking news” my friends with young children on the spectrum were afraid to send their child to school. Seems we didn’t have enough problems with bullies – now the bullies could cite the media as their reason to hurt our children even more. I have been in shock. I couldn’t for the life of me figure out why they chose to mention Asperger’s.  The question that I could not answer was this, “Why assume Asperger’s and not Sociopathic or Psychopathic?”  I have looked these two conditions up –Googled them - over the last few days and here’s a composite of what I have read.  Could no one in journalism actually take a moment to Google it also? Please look these up yourself as I narrowed the characteristics down quite a bit to simply prove a point and the list for each is much longer than what I am providing.  Then, after you feel prepared, relate each of them to the shooter at Sandy Hook. Sociopath:  Empathy is lacking. In doing a profile of a sociopath it is not unusual to find they were considered to be a 'problem child', exhibiting difficult behavior, have little interest in people, are highly intelligent, have few close friends, tend to be cold and manipulative in relationships and can be emotionally abusive. They seem to have a lack of remorse, be paranoid, secretive, and lack the capability to feel real emotions.  Add calculating and planning and it now borders on psychopathic behavior. Psychopath:  This individual is incapable of feeling guilt, remorse or empathy. They know the difference between right and wrong – but don’t care.  Psychopaths are highly intelligent, cunning, manipulative and incapable of normal emotions.  They tend to be extremely egocentric and narcissistic.  The have difficulty controlling their anger, and tend to be very aggressive. They are calculating and cold, but able to hide this from most people by mimicking acceptable behavior in order to manipulate an outcome. Asperger’s:  Empathy is present.   They may have difficulty expressing emotions but they do have them.  As a response to stress, someone with Asperger’s may experience a mental shutdown or confusion.  They have difficulty in conversing and may not understand non-verbal cues of others (for example, facial expressions), are very literal in their interpretations of instructions or phrases and most have a preference for repetitive, often simple routines.  They adhere strictly to rules.  They have a need to finish what they start.  Many seem to talk excessively, are impulsive, experience sensory overload and are viewed as vulnerable, resulting in harassment and badgering by others. If you are like me then you are asking yourself, “Why did the media pick Asperger’s?” Unsubstantiated, undiagnosed and with no valid reason to jump to such a conclusion, news station after news station began reporting a connection between possible Asperger’s and the capacity to plan the murder of children.  I was sickened by the statements, to the point of shutting off the news in order to just have some peace of mind. Autism Spectrum Awareness is building and one of the drawbacks to any awareness campaign is the misuse of terms in order to appear knowledgeable and “cutting edge”.  As soon as they found out he was not socially inclined they immediately assumed autism instead of more accurate conditions that reflect the horrific events, because they wanted to “sound” informative. What they actually did was hurt an already struggling community of individuals on the spectrum.  We can’t let this go.  People are already talking about the killer having Asperger’s – because the media said so.  We are going to have to counter these statements for years and years.  We will be fighting even more bullies at school, even more scorn from parents of neurotypical children, and until someone makes it official, we will have to keep pushing for a real profiler to accurately “label” this psychotic individual. My son is on the spectrum. He has empathy.  He is kind, intelligent and worthy of understanding and acceptance.  I’m not waiting for the media to get it right, I am going to repeat ad nauseum the difference between the criminally insane and autism.  We all need to.  Will you help me spread the word?

I found the newspaper article on Matt when he was seven. He played T-ball, something autistic children were thought unable to do. Complete with photo. I showed it to Matt.  As many of you know, Matt has no memory of his childhood. He read it aloud, unsure and unsteady, part of him didn't want to know, part of him had to.  As he read it I wondered if he saw what a miracle he was - still is. I went looking for it because just recently my autism website hit 3.5 million and word got out in my own community, leading to an email requesting an interview from the local newspaper.  Instead of feeling excited Matt was anxious.  “No paparazzi” was his only reply.  In other words, no cameras, please, and no questions either.  Matt is fine with me talking and writing about him but has no desire to be asked questions about himself and his life.  He knows he would be expected to reply and it’s stressful for him to do that as Matt is mostly nonverbal.  So I am his voice.  He allows me to talk about his life for him –an amazing honor for me. When I returned home from my interview today I told him about it and he listened, a stern look on his face.  Matt lost his childhood memories in adolescence.  When I tell people about him and he is listening he has that same stern look.  He’s not sure whether he believes his childhood was like that or not.  I can show him pictures- boxes of pictures – but pictures don’t show autism.  Autism is not a physical handicap – and that makes it almost invisible in photographs. Autism is seen in the behaviors, in social interaction and ability to communicate.  It’s not readily recognized in the photographs of his smiles while on vacations or at school awards. “Matt, you have been in the newspaper before, when you were only seven years old.” Our eyes met.  “Do you remember?” I asked. “No.” he replied, his eyes shifting downward. Not being able to remember makes him feel uncomfortable. “Not to worry.  I keep everything.  Let me see if I can find it”.  And off I went to dig through files.  The first one I came across was of him with his speech therapist.  That article was about his therapist, not Matt, but the picture was of the two of them so I showed it to him anyway.  “Do you remember this one?”  That look washed over his face again.  He was getting more uncomfortable.  He didn’t remember.  I switched gears.  I pulled one of the old newspaper clippings I found of his brother on the high school wrestling team and showed him that one.  His face lit up as he recognized his brother’s young face. He giggled a bit. Good.  He’s seeing that it is OK to be in the paper.  If his brother was in the news then it was OK if he was in the news too. I rummaged around a while longer.  Matt had already retreated to his game room when I touched on a yellowed newspaper folded into half twice and wrapped in clear plastic.  I removed the wrapper, unfolded the delicate paper slowly and sure enough, there it was.  The Southwest Virginia Enterprise….May 8,1993. Matt was seven years old in 1993, and the only autistic child in his special education classroom. He was the first autistic child in this area to play tee-ball.  It was almost a full page article with a huge picture of a very cute little boy standing behind the fence at home plate, giving the photographer a thumb’s up gesture. My memory remembers that day like it was yesterday, but Matt has no memory of it at all. I laid the paper flat on the counter, smoothed the creases out a bit with my hands and called for Matt. His walk told me he was unsure.  His face told me he was nervous.  What would he see?  Was he wondering if his autism would show on his face?  Would he even recognize that little kid? He looked at the picture first.  Something in his eyes – a glimmer of recognition maybe?  Or was it relief to not see his autism?  Something in his eyes told me he was more curious now than he was afraid. Maybe in examining that face depicted in the yellowed newspaper he realized the little boy in the photo was actually him. He then read the headline aloud, “Matt Takes His Turn at Bat: Seven- year- old battles his disability through tee-ball”.  His face scrunched up.  He didn’t like the title.  It had the word disability. “Let’s read it, OK?” I nudged.  Matt began to read the story aloud. “Seven-year-old Matt Johnson crossed home plate for the first time Thursday”. He read on.  It talked about his regression, diagnosis, and the hard part, his doctor’s prognosis, “Matt may never get any better and should be institutionalized”. He read about his first eye contact with me, our first communication through touch (the palm of my hand on his cheek), the first time he called me mom at age 5, his inability to respond to pain.  He stumbled on a few words here and there but he continued on. I could sense he had real interest in his story.  His voice was light, almost enthusiastic.  Matt was curious and that filled me with hope.  Did Matt remember this? Did it even matter anymore? After all, he was reading and learning about himself. He was absorbing a bit of his past.  Even if he couldn't remember he could learn about It in a real, and tangible way.  He was connecting dots to things he knew,  to things he was told and he understood.  The words discussed his autism, at a time when autism still had a huge role in his day to day life - a time when it was rare, a time when nobody had ever heard of the autism spectrum.  Matt was learning about himself in a newspaper and Matt loves to read newspapers. He also loves baseball and the news about Matt was also about tee-ball.  By reading the newspaper he discovered that before his first tee-ball game we took him out in the yard and practiced going from first base to second base, to third and then home.  I remember that day.  We bribed him with M&Ms candy and we thought we had it down until during that first game when he refused to stop at first base after the play officially ended, and insisted he had to go on to home plate.  I remember.  I remember how wonderfully funny it was.  How the umpire about had a stroke when Matt refused to leave the field until he touched all the bases. Some parents yelled in anger, some parents laughed and pointed, but the entire group of neurotypical adults was baffled by the presumed stubbornness of this little boy.  It didn't matter what other parents thought as he tried to touch home plate, we knew why he had to, and we smiled and giggled to ourselves.  We understood that we had not taught him all that was needed and there was the proof - right there, trying to get to past the umpire to touch homeplate.  I remember going to the coach, who went to the umpire. I remember the change on the ump's face when he realized Matt had a handicap.   I remember our sense of humor kept us sane.  Does Matt? Matt continued reading aloud, “Liz hopes one day Matt will be able to live on his own.  He is reading on a second grade level now and she hopes by fourth grade Matt can be taken out of special classes and join a regular classroom”. He stopped reading and looked at me, directly into my eyes.  He’s been striving for independence longer than he could remember, quite literally.  This year we are hoping to take that huge step.  As I watched his body language and facial expressions I was sure he made the connection.  I was pushing for him to be the best he could be even back then.  I hoped he understood that I have always had his back.  That we fight the fight together.  That we are - and have always been - a team. Just transitioning to a regular classroom was a massive undertaking, but he did it and it laid the ground work for the big dream – his independence– something I’ve wanted for him just as much as he has wanted it for himself, ever since he was just a little boy.  Now Matt knew it too.  He understood.  His eyes told me so. “Matt, you went into a regular classroom in the third grade.You changed schools, from Spillar to Sheffey, do you remember? You’ve always been very smart. I knew you would go into a regular classroom one day.” I said, “And you did it a year later”. “Yes, a regular class.”  He stated confidently. Matt has hated being different and those few words, yes, a regular class, carried an immense amount of meaning.  Reading about the plan, knowing it came to pass, knowing he was transitioned to be with other children, which allowed him to graduate high school years later with regular students, held his attention.  Was he connecting the dots?  I think so.  That was such a long time ago– 20 years have passed – and now he was reading about what he was like prior to that big year, when he was still in special education classes.  He had always wanted to be a part of a regular class and in reading the passage he knew just how far he had come.  He knew all that hard work had paid off.  I could see his epiphany on his face. No words needed. His expression said it all. Here was proof, in the black and white of the newspaper that he had made it. Then Matt read the last paragraph, “Matt came up to bat in the bottom of the second.  On his first swing the bat hit below the ball. Matt’s second swing connected for the solid grounder up the middle.  He stopped six feet from first base and had to be coaxed to step on the bag.  He got tired of staying on second, so he hung out at shortstop for a while.  But when the next hit found the outfield grass, Matt rounded third and made it home.” As he read the play by play the rhythm of his voice got faster and I knew he was excited for this little Matt of long ago, he was rooting for him to make it.  He paused at the end of the sentence, turned to look at me, a smile graced his face.  That smile was pride.  He was proud little Matt had rounded the bases and made it home. Then he looked back at the paper to read the last line, “They (the doctors) don’t give enough hope,”Liz said.  “You’ve gotta have hope.” Again he smiled, turned to look at me, and gave me a big hug.  Our eyes met. His were glistening.  It hit me hard.  I believe Matt understood a little bit more about where he had started and how far he had come.  I think he was proud. When he walked back to his game room to play I noticed he stood a little taller, walked with a bit more confidence. It was obvious Matt was feeling good about himself.  What was he feeling?  I can’t be sure, but I think it was hope.

I tried taking my autistic son, Matt for professional haircare, but I soon found that there was no such thing as a simple haircut.  Matt, not wanting to sit in the chair, put on the apron, or watch a pointed object approach his head, would struggle and fight through the entire process.  I finally decided I would have to attempt to cut his hair myself.  I hoped that maybe being in the comfort of familiar surroundings of home, that maybe, just maybe, we could be successful. I talked him into sitting in the chair and even in wearing the plastic drape, but all that cooperation disappeared when I got out the scissors. As I tried to trim his hair Matt would unexpectedly jut his fingers up between the blades of the shears in an attempt to stop the process: he squirmed, twisted, his hands in constant motion the entire time.  He especially hated the sound of his hair being trimmed around his ears - his hands again flying upward to cover and protect them.  It was exhausting, for both of us. This would be our routine for quite some time.  With no professional to cut his hair and me as his hair stylist, the poor guy endured haircut after haircut.  I was pretty awful at it in the beginning and must confess there were several times the end result was absolutely ghastly.  The only thought that allowed me to keep my sanity and lessen the guilt of the jagged edges and rollar-coaster bangs was the knowledge that it would soon grow out again - a double-edged sword as the process of cutting his hair was also rife with guilt and stress. So it turned out that a simple haircut was not so simple.  The worst one was when he was between the ages of 3-4 years old.  The hair cut was taking a very long time as I maneuvered around those tiny exposed fingers, trying to calm him with my voice while I brushed his hands away with one hand and cut his hair with the other. Having gotten just enough out of eyes and from around his ears and exhausted from the battle, I finally removed the drape and he hopped down.  Unfortunately, just when I was about to have that sigh of relief and thank my lucky stars for having not injured him, I witnessed one of the most heart-wrenching scenes.  Matt stared sadly at his hair on the floor.  With tears in his eyes, he bent over and slowly picked up a hand full of scattered clippings and tried to place them back on his head.  No matter how hard he tried, the hair simply slid off and fell back to the floor, and each attempt was met with even more tears.  Matt sat on the floor, mourning a piece of himself (his hair), a piece that was now lost forever. I imagined he must have asked himself  why? Why would his mother do this to him?  Why would his mother remove parts of him and sweep it into the trash?  I can’t imagine his confusion or depth of despair at the forced removal of pieces of his own body.  As I thought about what he was going through I became racked with guilt.  It made me realize that there is so much more to a haircut than simply cutting hair.  Matt didn’t understand the “why” and in his panic to save himself, he would risk bodily harm.  I can to this day, close my eyes and remember those tiny fingers trying desperately to stop me by getting between the strands of hair and the blade of the sheers. That was over 20 years ago.  Some memories are difficult to erase. Realizing that my son actually thought I was trying to take a piece of him and throw it away shook me to my core.  I learned an important lesson that day - everything needed a "why". I am happy to say it got better after that. Having witnessed his despair I came to realize that I had approached it all wrong. I should have cut his brother’s hair in front of Matt, and probably his daddy’s hair too.  I should have let him feel the scissors and have him cut a piece of hair himself.  I should have talked it through step by step and repeatedly for several days prior to the actual cutting.  I understand now that Matt struggled and fought me because he was afraid.  He distrusted me afterward because I had removed a part of him with no explanation as to why.  I deserved it - for I treated him like . . . a child. In order for a simple hair cut to be a simple hair cut I needed to take each step apart and explain the "whys" and show him examples of others having it done.  He needed to see that it was OK, that no pain was involved. A simple hair cut may have actually been a simple hair cut if I had thought it out better. After a few years of practice and patience and the cooperation of both my oldest son and husband in being role-models, Matt’s fear disappeared. He now comes willingly to the chair, keeps his hands under wraps, and checks the final style in the mirror to make sure it is to his expectations - all very normal behaviors. This could’ve happened sooner had I just known of his fears.  We didn’t have any problems with hair for several years – until Matt’s other hair began to grow. Puberty seemed to arrive much quicker than anticipated.  I was unprepared for the changes in his body, his voice and his behaviors.  Matt had learned to put on deodorant, brush his teeth himself, and now it was time for him to take his own shower without help or supervision.  Prior to the onset of puberty I had always ran the water for him, brought in his clothes, got his towel ready and midway through the splashing of toys would wash his hair.  Then one day I noticed he had a small patch of pubic hair – it was time for mom to back out and turn over the nightly bath to my husband.  The change in routine was difficult at first, but Matt was also becoming very aware of what other guys did – mainly his brother and daddy – and was easily convinced to attempt the shower in lieu of a bath.  In the beginning there were many failed attempts - times when all he did was get wet.  He would emerge from the bathroom with a dirt ring still around his neck, his hair wet, but still greasy and dirty.  I would have to send him back in to do it again.  When I sent him in I would give more detailed instructions - something he really needed.  He learned quickly that I would inspect his neck and ankles and fingernails and smell his hair afterwards and this helped him to realize what was needed.  Still, there were times in which I suspected he only washed those specific areas.... Next, Matt’s facial hair had started to come in.  We attempted the “shave”.  I tried to help him once or twice, but let's face it, I don’t shave my face and am not the right person to instruct him.  I tried - really - but I just couldn’t seem to help him do it right.  Tom, my husband, stepped in at this point and went over the procedure step by step, taking his time and explaining each part. He had watched Tom and Christopher shave, and this help to at least give him the courage to try it, for which I am thankful.  Matt even thought the foam shaving cream was pretty cool and liked putting it on his face, but the fun stopped there - he hated the scratchy feel of a razor. His face always appeared irritated afterward and soon acne started to form. After a few months of struggling with regular razors we switched him to an electric razor - heck, what did we have to lose?  Unfortunately, he hated the buzzing sound and again, the blades tugged at his whiskers - he just couldn’t stand it.  I understood.  Matt was tired of having to rub this metal torture devise across his face.  Why?  Not "why was it a torture device?", I got that.  I meant, "why does he need to shave?" It seemed reasonable that there was still a choice left  –keep the beard. Matt was only in 9th grade when he began to really grow his beard. Christopher also grew out his facial hair, and Tom allowed his own beard to emerge again.  I watched as Matt’s face transformed to one with a beard. He looked so much older.  To be truthful, he looked a bit scary – a big guy, a beard, and now a deeper voice too- what a huge transformation from my sweet little boy into the physically adult (and scary-looking) Matt.  He appeared so rough to my eyes that my first thought (and I kid you not) was, “this is definitely not someone you would want to run into in a dark alley”.  I needed time to adjust..... Slowly, I did adjust.  I actually began to like this new persona for exactly that reason - that no stranger would ever think of him as helpless and this brought me some peace of mind.  I really began to enjoy this new look - bad-assed Matt! So, Matt takes showers, gets his hair trimmed on a regular basis and has a beard – a really cool one. He lets me trim it up and allows me to thin it out to make it appear neat and tidy, but not because he needs it to look a certain way - I’m the one who wants it trimmed (he would let his beard grow to his feet if I let him. At the rate it grows it could be there in about 6 months).  What I like is that Matt’s happy with the way he looks.  And although it took some getting used to, I am too.  He really has come a very long way and through it all I learned a lot about my son, about myself  … and about autism. I have found that just as with most matters concerning the autistic child, time and patience brings revelation and clarity.  And although there may be no such thing as a simple haircut, given enough thought and understanding there will still be some success. Matt may not shave, but he sure can rock a beard!

Sensation, whether visual, auditory or tactile, can be difficult for the autistic individual. Overcoming the onslaught, dealing with the sensations and figuring out how to interact in an environment filled with these uncomfortable and some times overwhelming stimuli are a daily ritual for many autistic children.  Over the years my son has learned not only how to accept them, but has also figured out how to lessen the impact.  Matt is 26 years old, (almost 27), and has spent 25 of those years navigating sensory overload.  Over the years I have watched him learn and grow and just like every child, on the spectrum or not, he continues to learn how to interact in a complex world. I wonder, how much of his success can be directly related to his desire to interact with his environment? This past month we carved pumpkins for Halloween.  Now Matt has drawn on pumpkins before, has even tried carving before, but this year he did it all.  From cutting the cap to cleaning out the goo to creating a design to carving, Matt did it all.  While all of these things required interaction and creativity I am most impressed with his ability to think through a problem– more specifically, a sensory problem – and come up with a solution all by himself.  Watching him I became convinced that his desire to succeed outweighed the obstacles his autism placed before him. First, I must give you a bit of background on Matt’s specific sensory issues.  From age two his childhood was impacted by sensory issues.  Lights were too bright, textures were too overpowering, sounds were too loud, smells and tastes were too strong.    Over the years he has learned to dim the lights, muffle the sounds, taste something new in minute bites, and overcome his aversion to certain textures.  Over the years Matt has increased his threshold for all of these things, being much more capable now than he was as a child to interact in an environment filled with sensory assaults.  He can shoot targets as long as he wears ear protection, can enjoy a get together in a brightly lit room, and has learned which foods are enjoyable and which ones are not worth even tasting because he has learned that smell and taste go together. The one sensory area that he continues to battle on a regular basis has been tactile.  It seems some textures still feel too awful to put up with. For example, Matt doesn’t wear socks . . . ever.  Socks suffocate his feet.  It doesn’t matter how cold it gets Matt will put his shoes on without having first put on socks.  When I have questioned him on this over the years he generally gives the same reply: a wrinkled nose, a disgusted face, and “no thanks”.  It’s obvious.  Some thing about the feel of socks does not mesh with the sensation it makes on his skin. I haven’t bought him socks in many years . . . I finally learned to accept that my son will never wear socks. But socks are not the only problem. Certain shirts can not be worn; nothing with buttons or snaps or collars.  Coats require zippers.  Shorts are preferred over long pants.  Long pants are acceptable only under certain circumstances.  For instance, he will wear them only if it is so cold that he actually HAS to. In contrast, some textures are wonderful.  Matt likes the softness of his kitty’s fur and will pet her lovingly.  He is not so fond of dog fur, which is coarse (dogs are bigger and louder too, so there’s more to it than just texture). His prefers baby animals, but all animals seem to have a piece of his heart.  Kittens and puppies are even hold-able.  Matt will actually put his face close to their face and snuggle briefly.  But domesticated animals are not the only ones in his life. This past summer we rescued a pair of hatchling brown thrashers.  We had them for several weeks, feeding them and walking them through flight school and bug hunting every day.  What I found amazing was that Matt allowed these wild birds to sit in the palm of his hand and even latch onto a finger to perch.  Knowing full well the bird’s feet were cold and the talons sharp after that first experience he was still eager to do it again and again. It was obvious his desire to pet the bird and hold it was stronger than the tactile sensation that came with it. He really enjoys the petting zoo at the fair too and will hand feed the adult emu, the zebu, and the llama, leaving me in awe as I know he feels the forceful peck of the emu and the wet, leathery lips of the zebu and llama as they lap at his palm.  I remember when just holding the seed in his hand was a major accomplishment.  Those early years of struggle and tears were met with an ever increasing determination to succeed, fueled by a deeper, more powerful emotion - desire.  Now Matt can even feed an Oreo cookie to a wild pony while on a day hike of the Appalachian Trail. The ponies are large and can be quite intimidating, but he fights any fears for the opportunity to interact with such a beautiful creature.  The resulting smile says it all. I ask myself, is it desire that trumps tactile aversion?  Does he find it within himself to overcome the uncomfortable sensations simply out of a deeper desire to experience a particular interaction?  It seems so . . . at least to me.  I think maybe Matt has learned how to submit himself to certain textures and increase his threshold to certain sensations, because the desire to experience that specific interaction is just too great to ignore. What about food?  Matt enjoys finger-foods, like pizza, corn on the cob, fries and tater tots.  He picked out these foods as a child and generally hasn’t changed his diet much over the years.  Some foods require eating utensils – pudding, ice-cream, cake, peas, and broccoli.  He would rather not use a spoon or fork, but I guess the taste is worth the uncomfortable feel of silverware in his mouth.  Those few I listed are the only ones he will use silverware for (some things haven’t changed much over the years… )  I seriously don't think it's the feel of the utensile in his hand - I think it's the feel of it on his tongue. Over the years Matt has learned to touch and learned to deal with the sensations that touch can produce. And this leads us back to the recent Halloween pumpkin carving and the joy of witnessing another wonderful moment when he not only battled the unwanted sensation but used critical thinking to solve the problem of how to avoid it.  This year my husband Tom, Matt and I worked on pumpkins all with a Great Pumpkin theme – Matt’s favorite Halloween show.  In the course of creating our pumpkins I watched my son tackle one of the worst tactile sensations of his life.  I am talking about pumpkin goo -that slimy mess of seeds, vegetable fiber and juice that must be removed from the pumpkin prior to carving.  Matt watched his daddy remove the top of a pumpkin and start scooping out the nasty goo.  Matt removed the top from his own pumpkin and slowly put his hand inside. A grimace washed over his face as he timidly pulled out a small bit, flung it on the newspaper, and hurriedly wiped his hand on a towel.  Amazingly, he put his hand back in and repeated the process over and over, each time making a face that screamed “YUK!”  Determined to do this all himself, Matt submitted his entire being to the feel of pumpkin goo – a major accomplishment.  But that’s not the whole story. Unfortunately, he couldn’t finish the project that night, nor the next night, or the one after. Some times other things just get in the way of a very cool project and that is what happened here.  It was days later when there was actually time to resume the Great Pumpkin Carving of  2012.  By then however the pumpkin had begun to go bad.  Having sat in the warmth of his room it had already begun to mold.  The pumpkin would have to be tossed and the project begun again with a new pumpkin.  We all sat at the kitchen counter drawing our designs on our pumpkins, each with a Snoopy motif. Then one by one we each removed the top and started the removal of the goo.  Matt opened his pumpkin and stared inside.  A look of disapproval emerged on his face as he contemplated the next task - alook that said,  “oh, not again!” slowly emerged on his face.  Aproving grimmace was replaced with a new one – a “wheels turning” type of look.  I knew Matt was working the problem out in his head.  Then he looked up at Tom and me and announced in a strong and forceful tone, “I need plastic gloves!”  Tom and I looked at each other for just a second, with smiles on our faces. We replied almost in unison, “that’s a great idea!”  Tom hunted and found a pair of blue nitrile gloves and handed them to Matt who slipped them on like he had been using them his whole life, and happily proceeded in removing all the nasty goo.  It was obvious that a feeling of empowerment had welled up within him. This generated a boost of energy that fueled his determination to get the job done.  He flew through the chore so quickly that he finished before me, even though I had started first.  Upon finishing, he removed the gloves with a “ha!” and went to work on the desired carving of his much loved Snoopy. Triumphant and proud, Matt announced he was done.  The mission accomplished, the foe beaten, Matt - exceedingly pleased with both himself and his work - proudly displayed the finished project.  As he walked to his room to engage in some much needed video game down-time, I noted he stood taller, his shoulders back, his gait strong and confident.  This was not just because he had carved a pumpkin – this was because he had figured out a way to beat the pumpkin. I am quite sure now that it is desire that trumps sensation.  I am confident that what I have seen over the years as Matt has taken on all those overwhelming sensations and forced himself to deal with the uncomfortable and some times painful stimuli, is determination - a strength of will fueled by sheer desire. By raising the threshold of sensation to new heights simply by a deep longing to interact with his environment, Matt is slaying dragons - the dragons of his autism.  Desire, after all, is a powerful motivator.  Autism forced him to deal with things you and I can only imagine, and Matt fights his autism every single day.  He hates his autism, and he desires something more.  He wants a regular life, an independent life, one where autism does not rule him. A life where he rules his autism.  From the looks of it, his desire is his most powerful weapon in his ongoing battle to slay the negative aspects of his autism.  I know I will never underestimate the possibilities that lay before him because I understand the power of sheer desire in overcoming the obstacles of his autism.  I have witnessed his  determination and his will-power.  I have seen the courage that emerges when desire is more overwhelming than fear, more overwhelming than pain.  I understand now.  I have been a witness to the slaying of dragons . . . and I am in awe.

We all had such a wonderful time last night at the Christmas dinner at grandma’s house.  It was great to have everybody in one place at one time. But this year, well… this year was especially wonderful.  I want to thank my mother-in-law, Thelma, from the bottom of my heart.  For those struggling with family get togethers - this is how it's done, and done wonderfully.  This post is to thank this wonderful lady for one of the best holiday get togethers I have ever experienced. Dear Thelma, First, I want you to know that Matt has always loved going to your house.  He is comfortable there.  You always have a newspaper for him to read, a word-search puzzle for him to concentrate on and something on the television that he enjoys.  He loves watching the news, but he also loves the silly obstacle-course game shows and the history channel and you always seem to have on just the right show going on in the background – shows I doubt you would watch if not for Matt.  There are times when I have wondered if his love of watching the news is an off-shoot from time spent in the comfort of your home.  I like to think you help to instill that in him. Christmas gifts can be a challange when buying for an autistic young man.  Believe me, I know Matt can be difficult to buy for – for any occasion -but that has never seemed to have been a problem for you. You realized so quickly when Matt was young that this guy loves to shop and the very best gift for him is the money to do so.  His expression when he opens the card to find a crisp $50.00 bill is one of pure joy – it’s apparent that you understand him very, very well.  He is anxious almost immediately to spend it and his mind quickly focuses on scheduling a whirl-wind shopping spree.  Matt did just that on our way home last night.  We have already made our plans to take him.  Matt is so excited! Matt spent the evening comfortable – as if he were right at home, listening to conversations, engaged with the word-search puzzles or reading the newspaper. He stretched out on your couch to watch a countdown of the “101Gadgets That Changed the World”.   He loves history and he was glued to the TV for the top 10 - as were everyone else in the room - such a wonderfully natural response. Earlier in the evening his siblings had him laughing so hard he had tears and the sound of his laughter filled my heart more than I can adequately express.  The entire evening was joyous and warm and loving and I am in awe of the thoughtfulness you showed so effortlessly for my youngest son.  This year you really out-did yourself.  This year, even the menu reflected your thoughts of Matt. The menu of our wonderful get-together was so Matt-oriented.  His favorite vegetables(peas and corn), his favorite food (fries) – did not go unnoticed. I want to express my deepest gratitude for the dinner – it was all so ….wonderful.  I felt bad that Matt would not eat the chicken tenders.  I know you had them for him as his favorite meal is chicken nuggets and fries.  But, unfortunately, you were not aware there was a difference between nuggets and tenders and that is my fault – not yours.   It is my fault that he didn’t eat them because I never made it clear how picky he is about the shape of a chicken nugget. He tried, Thelma, he really did. He took a bite, looked at me with a face filled with worry and quilt then shook his head.  He just couldn’t eat it.  I told him it was OK, that he didn’t have to, that you would understand . . . and I know in my heart that you do. Matt was instantly relieved because Matt knew it in his heart too.  He knows how much you love him. The entire evening was wonderful.  I can’t remember a better Christmas.  It would be a shame if I never told you.  You made it all so perfect for everyone.  We all had such a great time.  But especially, I wanted you to know how much it meant to me and Matt and that none of it went unnoticed.  Matt is difficult to gage sometimes.  It’s hard to know what he will eat, what he will do and what he wants as gifts – but you have really shined these past years in your understanding, compassion and awareness of his autism.  For me, this Christmas was the best Christmas ever for family and loved ones.  That’s my own perspective of course.  There was so much warmth, laughter, joy, love, and understanding that filled your home that I just couldn’t let this experience slip away without saying thank you. So, thank you, Thelma, for being a wonderful mother-in-law and a wonderful grandmother to all of our children. And from the bottom of my heart –thank you for taking the time and expending the energy and demonstrating so much love for my youngest son.  It’s not easy – apparently – because so many find it so difficult to do, but you made it seem easy – as simple as breathing. Thank you. Our Christmas with you this year was more wonderful than you could have ever imagined. I want you to know how special you are.  I love you.

Tuesday, April 2, the world will celebrate the 6th annual World Autism Awareness Day. The day was established by the United Nations General Assembly in 2007 - in a landmark resolution that passed unanimously and became only the third health issue to be given its own day of recognition across the globe. Some of the tallest buildings in the world will “go blue” tonight to ignite the “Light-it-up-blue” autism awareness campaign for the month of April. It’s also a time for reflection. Looking back over the last 27 years I feel nothing but pride for my son, Matt. As parents we realize that having autism makes a child different than their peers in areas of learning, communication, speech, emotions, and even in various health issues. It forces them to use very creative ways to learn to enmesh themselves into an environment that is confusing and sometimes even hostile. The amazing thing is that they do.  My son has continued to move forward, against all odds. He is comfortable now with who he is.  He has pushed himself and has made strides far greater than anyone had predicted . . . except for me.   I always held on to hope. Maybe Matt is different than other autistic individuals in the things he has overcome, but I can't help but feel the possibilities are there for others like him.   I know the autism spectrum is vast, with varying degrees of severity and symptoms, but I don’t feel others can’t learn or move forward too.  Am I being overly optimistic? I truly believe all children can learn. Sometimes it may take longer and the road may be more difficult for someone with autism, but it can be done.  Learning is dynamic – not static – regardless of his age, regardless of his autism. Each year I reflect on the accomplishments my son, Matt, has made and we set new goals for the year ahead - small achievable goals. It's slow, but it's not a race.  Time is not the issue nor the focus - achieving each goal is the focus.  In reflecting on his past, where we started on this journey and how far he has come I find I am in awe of my son; his perseverance and courage define him in my heart. At diagnosis I was told that Matt was “moderately-severe” autistic. He had regressed into autism just before his 2nd birthday.  Autism was rare; 1:10,000.  The doctor told me the only reason he didn’t get the “severe” label was because he did not harm himself, but other than that, he was classically, severely, autistic - having every text-book symptom and behavior. Although they (the team of doctors) didn’t wish to saddle him with the severe moniker, they still stressed his severity and recommended institutionalizing my son.  They rationalized that Matt would be too tough for me to raise and told me that I didn’t understand how difficult it would be on me and my family. This is where we started on this journey. I don't want anyone to assume that the reason he has done so well is due to a milder form of autism…. and please don’t assume any degree of autism is easy…or, that a child’s autism will ever go away.  Over the years there have been good days and bad days - but the good days out-number them by far. I'm sure you have heard the saying, “It takes a village” and we met some great people along the way, people who cared about his abilities more than his disabilities - and they have had a wonderful influence on him.  As a parent – to any child, not just an autistic one -it is normal operating procedure to try our best, learn about our child’s needs, and seek out the right path. In comparing my neurotypical child to my son with autism the only thing different in the paths I took were in the specific needs and the amount of time devoted to those meeting those needs. For me, figuring out what he needed required me to understand what he was going through. It took lots of time, lots of observation, lots of trial and error, and above all else, lots of hope. In 1988 these were Matt’s symptoms as listed on his medical record. Social interaction • Avoids eye contact • Difficulty in understanding facial expressions or body gestures • Lack of interest in people • Lack of empathy • Doesn’t want to be held • Anxiety in a crowd Communication • Delay in, or lack of, speech, or echolalia • Difficulty in starting a conversation or continuing a conversation • Difficulty understanding sarcasm or humor in language use • Appears not to hear, doesn’t respond to their name Types of play • Spinning toys or just the wheels on toys. • Lining up toys in long lines. • Fascination with a particular topic. • A need for sameness and routines. • Lack of imaginative play. • Plays alone. Sensory • Reduced sensitivity to pain • Hypersensitivity to sound, taste, and sometimes light Stereotypical behaviors • Body rocking • Hand flapping • Spinning As Temple Grandin has said, autism is based in fear – fear of all the unknowns of this world, from how to communicate to reading facial expressions to trying something new. I understood his fear long before reading about Temple's journey. I was gentle in my persistence to communicate with my son - verbal and non-verbal - and it paid off. Once he understood I was there to comfort him and fight the fears with him, be his voice and his champion, the learning began. We moved ever forward, day after day, year after year, sometimes at a snails pace, and other times with leaps and bounds. The changes were subtle at first, then bolder, and now I look at my son as he is today – 25 years after his autism diagnosis, and I am speechless. This is Matt today - Social interaction and Communication This will always be an area for concern and we still work on it daily.  He does converse, even when it’s difficult for him and for all accounts he is mostly non-verbal.  When he does speak he looks into your eyes. If you smile, he smiles. Matt has a genuine interest in the people he knows and loves and if someone feels bad or is happy, Matt picks up on it.  Matt has more empathy than most neurotypical adults I know and cares deeply about his family, his pets and his home. He will stand up to another person if he feels that person is wrong in their behavior and he always champions for those whom he feels is weaker. He has a good soul and a big heart.  He conveys most of his communication in non-verbal language using his eyes, his body and his gestures and social interaction is now more about teaching others his language than teaching him theirs. He is uncomfortable at times around people he hasn’t officially met, but an introduction opens the door to acceptance in both directions. He can be in the middle of an enormous crowd of people he doesn’t know without showing any signs of apprehension as he has learned to focus on other things. Actually, Matt enjoys the adventure of going out. Football games, flea markets, beach combing….crowds are just not a concern anymore. In the early years I was most worried about his ability to speak, as I knew the brain would stop attempting speech around 5 years old. But not being able to speak does not mean he can't understand speech.  I have read that 40% of all autistic children have no speech – that’s a very scary statistic, and a very sad one, but it doesn't mean the autistic person does not understand you.  We were fortunate in that Matt began speaking just before his 5th birthday.  We then passed through the echolalia stage next (about 2 years worth) and then his speech seemed to improve yearly. He now says 2-3 sentences per day and these few words reveal a wonderful sense of humor, passions for various hobbies, knowledge in science and history, and insights into neurotypical behaviors and speech.  He learned how to adapt his own behaviors to more closely resemble what he saw as "normal", allowing him to blend in better. Matt hates his autism and purposefully seeks out ways to be more like those he sees.  This was his choice, not something we forced upon him.  He examines simple everyday human behaviors and chooses which ones he likes and which ones he doesn't.  He is still practicing, but so far his ability to incorporate the actions and behaviors he likes has made him quite good at blending in.  People who meet him for the first time often remark they didn't know about his autism - until he tried to speak. Types of Play. As a young child, Matt spun toys and the wheels of toy trucks, trains, and cars. But as he learned new outlets for communication and imagination; in art, games and books - the spinning stopped. Matt still has a fascination for particular topics but he has expanded his interests to many new areas of history and science, national parks and hiking. Although he still likes to be alone for several hours each day, he also enjoys being with others. Keeping to routines are mostly a thing of the past also, (with the exception of Friday night pizza), there really are no set in stone routines anymore. Sensory Matt still has some hypersensitivity and certain sensations can still cause discomfort on occasion. His showers are still luke-warm and his room dimly lit, but he doesn’t avoid loud sounds anymore. He is still very particular about what he wears, especially on his feet, but he has overcome a tremendous amount of hypersensitivity in his clothing. He tries new foods – doesn’t eat them, mind you – but he will taste-test. There's always that hope that any day now he could add a new food to his limited menu.  Just last year he added chocolate milk shakes after tasting one. Pain, unfortunately, is still an unknown. We are always vigilant for signs of pain because we are unsure if he would reveal his pain to us before it becomes life-threatening. But a recent viral illness showed me that he could take care of himself with rest, fluids and medication all self determined and administered. Stereotypical Behaviors Also a thing of the past. We haven’t seen any for many, many years now. Those behaviors that now-a-days are referred to as "Stimming" are long gone. Matt is now 27 years old and we take each step forward at a pace he sets. I accept Matt for who he is and I don’t push him to change any particular behavior – instead I suggest various ways to achieve the things he wants and help him focus on the steps toward the goals he sets for himself. If he never changed another habit or behavior he would still be the light of my life. He is a man and as a man, Matt chooses what to change, what to improve on, and what is fine just the way it is. Over the years when new challenges were met or old ones were overcome, we celebrated in this house.  When he was a child I set the goals and we took our time  in meeting each one.  It wasn't a race, it was a goal and for most, slow and easy was the best route.  Now Matt is a man.  When goals are met we still celebrate  – not because we wanted him to change, but because Matt sought to change certain things and did it on his own.  I recognize that he is continually trying to be the man he wants to be and I am astounded by his courage and willingness to do what it takes to accomplish each goal. I can honestly say that his progress has been one unexpected joy after another - because I remember where we started. Each year we fought battles, met challenges head on and set new goals. It wasn’t a picnic, but it wasn’t all doom and gloom either. Life has been an adventure, and not just for Matt. I know I am a better human being for having the opportunity of sharing my life with this incredible young man.  I want others to know there is light at the end of the tunnel - how bright the light depends on you. Many years ago I was asked if I believed in miracles. Without hesitation I replied, “I see them every single day”. I was of course, referring to Matt and the wonderful way each day provided some tiny step forward, some steps so small you would miss them if you weren’t looking. I’m always looking- eager to witness that next miracle. Each time I see a small step forward my heart is filled with hope that my son's ultimate goal - a place of his own - will be realized. This is that year.  Matt will be attempting his independence - moving to a place of his very own - some time this summer.  So much hope . . . about to be realized. Remember, this wonderful man before me was once considered hopeless, unteachable, and unreachable by those that did not know him.  Strangers would have had him institutionalized.  There was no autism awareness.  No one knew what they were capable of.  We chose hope.  Continued hope and working toward goals allowed Matt to graduate high school with honors.  Hope and hard work will allow him to attempt independence. This is what hope can do. For those new to raising the autistic child, I send you that same hope. Hope - that you see the tiny steps. Hope – that you see and understand the courage it takes to make those steps. Hope – that autism as a disability will not define your child, but autism as a uniqueness will be seen instead. Hope – that your child’s dreams will eventually be realized. Hope.......that you too will witness miracles every day.

I am always amazed at the continued learning that takes place for my son, long after high school and deep into his adult life.  A diagnosis of autism brings with it so many misconceptions, one of which is that the behaviors witnessed in a 2 ½ year old are permanent.  Of course they are not, as many parents can attest to - they are ever changing throughout their early years, regardless of which therapy is chosen.  As long as there are loving interactions and a willingness to accept that autism requires a different way of learning and for parents, a different way of teaching, then anything is possible. Over the 27 years of navigating the ups and downs of autism I know my son, Matt, is learning in his own way how to communicate and interact socially.  There are times when my role has been simply as his cruise director, helping him enjoy an experience I know is difficult for him to participate in. Never had this been clearer to me than this week as Matt and I attended a party for my mentor, Fred, who was retiring from teaching college science. Fred was one of my science teachers when I returned to college to seek a degree in Biology.  He offered research experience as one of his course offerings – research on spiders – and I was eager to learn and get that experience.  The research required me to come in at odd times and even weekends and with no babysitter I decided to make these trips an adventure for our 4 children.  I remember their first time in the spider lab.  They were all so curious and eager, all except for Matt.  Matt was curious too, but scared.  He remained in the hallway just outside the door, pacing back and forth as he listened to the questions and answers from a safe distance.  It took several trips before Matt could bring himself to enter that creepy room with spiders in boxes, fruit flies in vials, strange musty smells, humming computers and bright lights.  He eventually did and he eventually began to feel safe enough to look at the tall bearded stranger that hung out there on occasion.  Fred always laughed and smiled – the key to encouraging Matt to accept him as one of the "good guys".  Matt rarely spoke a word in those years so communication was mostly through Fred’s humor and my translation to Matt in short, precise sentences and then describing everything to him in detail when we would return home.  Matt learned about spiders, about research and came to like the gentle giant known as “Fred”. I returned to the same college again for my Master’s degree and yes, I would take Matt along on occasion for more adventures.  Matt was older and by then very willing to walk with my husband around campus, take pictures and explore all the new areas while I was in class.  Matt had become intrigued with college campuses and one of his favorites was Radford - his mom's favorite and the place where he saw Fred. While on campus Matt would have to stop by the library, his favorite place, so he could check out the science books and magazines.  Science had become his favorite subject.  We also would swing by Fred’s office to see if he was there just to say hello. Years later, I returned to the same campus once again as an adjunct science instructor.  Matt was thrilled with the news and eager to explore once again the campus of so many childhood experiences.  The campus was still growing – there was always something new to see.  How many times did he run into Fred over all those years?  There were so many occasions for a friendly “hello” and “what have you been up to lately?”  Each chance encounter renewed his memory of his favorite gentle giant. Last week I received the email invite to Fred's retirement.  I excitedly told Matt of the event and without missing a beat he wrote it on our calendar in big bold letters.  He didn’t have to think about it, didn’t wonder if he could manage to be around so many strangers, didn’t ask what it would be like or become anxious (like he does when I invite him to picnics and other events). Not this time. This time Matt just took it as common knowledge that he was going with me.  There would be almost 100 people attending . . . Matt would know only one. Could he really do this? Up to now Matt had never wanted to go to parties.  He didn’t like picnics or large events unless family were involved and always expressed a simple “no” when asked if he wanted to attend.  Just wanting to go to Fred’s retirement party was therefore a new milestone, another barrier broken through.  The big questions in my mind were “How would he react?" and " Would he be able to handle the sounds of unknown voices, the movements of strangers, and the smell of foods he would never attempt to even taste?” I’ve been navigating autism for a very long time now so it was just natural to take care of the small road blocks to his enjoyment of the evening – I basically paved the way for a smooth night.  The first thing we did was drive to the location of the party (at a retreat in the woods) the day before.  We drove the long winding path so Matt could memorize the signs and the landscape.  He even took a few pictures of the mountain views.  The next day I made sure we stopped for his favorite meal of chicken nuggets on the drive there.  I purposefully waited until I knew most people were already there, arriving an hour late, just so Matt could ease into the room without wondering what to do and all the attention would be on Fred.  When we entered the speeches were under way and Matt immediately picked out Fred.  His joy at seeing his favorite spider-man was obvious - a smile graced his face from ear to ear. When the speeches were over we made our way to Fred, who greeted us enthusiastically and spoke to Matt as naturally and light hearted as always.  Matt took pictures, and even gave me his camera so I could take one of him with Fred. I saw other people I wanted to speak to also, some I had not seen in ages, and Matt followed along. As soon as he would glance downward and pace back and forth – a sign of distress – I knew that was my cue to introduce him and brag on his preparations for the big move to his own place.  The person listening took that cue from me and ran with it, asking Matt simple questions that allowed him to focus on his plans and his joy.  One conversation became very  extended for me and when I looked up I noticed that Matt had walked away.  I scanned the room once or twice and finally decided to search for him.  I found him in the hallway reading the posters – something he likes to do at the college.  He really didn’t want to go back in but he didn’t want to leave.  I was expecting this dilemma and asked him if he needed a drink.  I had brought a cooler of pop and left them in my Jeep for just such an excuse to casually get out and away from the commotion for a few minutes.  He jumped at the chance, thankful he had a reason to take a break.  Appearances, after all, are everything to Matt. We took our time and slowly walked in the dark toward the Jeep, commenting on the stars and the beautifully warm evening.  Once there we sat for a few minutes and I asked him a few questions and made small talk until I could gage how he was faring.  After a few minutes of down time I could see he was ready to go back in for round 2.  People were beginning to leave by then and the crowd was thinning out and that helped Matt feel more at ease.  We once again got a chance to actually speak with Fred a bit more and Matt’s smile was bigger than ever.  I introduced Matt to Fred’s wife, Cindy, who was just as warm and gentle as her husband. Matt took to her immediately. Overall, it was a wonderful night.  Matt handled it all.  He did his best and he did great and I told him so as we drove home.  This was his first time mingling in a crowd of strangers and although I was prepared to go at the slightest hint that he was too overwhelmed it never got to that point.  He did it. He actually did it. I don’t think Fred had the slightest idea of what a big deal this whole night was to my youngest son. He was simply himself; gracious, smiling, laughing, the gentle giant Matt (and I) revered.  Thank you, Fred, for pushing me to be my best without ever seeming to push, and thank you also for having that exact same affect on my dear son.  You did it all so effortlessly. As for Matt, well, all I can tell you is that learning never stops, and that is true for those with autism or not.  Who knows what the next barrier will be that will come crashing down as Matt continues to grow and navigate his ever changing environment.  One thing I do know?  Nothing, it seems, is impossible.

Ever have a secret that even though you were glowing inside you just couldn’t tell anyone?  There are all kinds of secrets; the kind that you carry as a burden, the kind that brings tears, the kind that fills your heart. What if you couldn’t tell anyone – not because you wanted to keep the secret, but because you seriously couldn’t tell because you couldn’t find the words?  What if that part of your brain still struggled to connect thoughts to words? In other words, the thoughts- to-words neural highway was still under construction? I was reminded of this yesterday.  My son Matt is autistic and mostly non-verbal.  He speaks about 3-4 good sentences a day – a huge increase from his mostly silent childhood. Yesterday we were on our way to town to see a movie.  Matt was in a really good mood, excited to be going to the movies, shopping and out for pizza.  As is usual, I prompted him to speak by asking simple questions.  It was just him and I in our Jeep, traveling on the interstate toward town.  It was one of those mother and son kind-of-days.  I noticed Matt grinning.  I smiled in return.  “What are you thinking about, Matt?” Now I expected him to say something about the movie we would see that evening or maybe something about what he was planning to buy, or maybe his mind was on the fact that his daddy would be coming home late tonight from his job in a neighboring state.  I expected Matt to say one of those things – in his matter-of-fact way he has of conversing. But none of those things were on his mind. “I was thinking about last fall, in Radford.  I saw a semi-truck.”  He began as he leaned in close and half covered his mouth as if to tell me a wonderful secret.   This was unusual behavior and I instinctively leaned in toward him in return.  When he could almost reach my ear he whispered excitedly, “it was a Books-a-Million truck in the southbound lane headed to Bristol!” Wow… I wasn’t prepared for that. I immediately went into decipher mode. I know Matt loves books. He loves to read and he loves book stores where every kind of book imaginable surrounds him.  But what took me back a bit was the way in which he told me. This was a huge secret he had been unable to share with anyone.  He must have thought about it ever since he had seen that truck months ago.  He must have thought about how it had been headed south (using the signs on the interstate, or maybe the address was on the truck) and wondered about where that store might be in Bristol. “It was? Really?” I replied. “Yes, and remember at ETSU?” he continued. That remark meant he had seen another store close to the campus of Eastern Tennessee State University in Johnson City, TN.  Many years ago we had visited his step sister there at school.  Did he see the book store way back then and been longing to go ever since?  He doesn’t use the internet so I know all of this information had to be from the sign on the truck or from road signs, or even memories of trips taken years ago when he was a young boy.  I did a search on the internet last night and sure enough there’s a store listed in each city. I thought about his desire to go in search of this massive book store – an adventure so desirable, so magnificent, that he couldn’t even find the words to tell me until now.  I thought about how he must have been dreaming about it for at least the past 4-6months, maybe for years, before excitedly whispering it in my ear. Maybe you are wondering what the big deal is.  If you are the parent of a mostly non-verbal autistic child I am sure you understand.  You understand how precious this moment was.  He leaned in and whispered it to me!  It meant something very special to him and until that particular moment in time Matt had not been able to voice it to anyone.  He simply couldn’t find the words to tell me. Although the desire must have been great, Matt had not been able to ask me to take him there.  He couldn’t tell me – not until yesterday.  Not until everything came together in a specific moment in time; driving on the interstate, alone with his best friend (his moniker for me) who could take in all his forms of communication and understand both his words and his joy, but more importantly  his neural highway which connects thoughts to words was clear from obstruction. I gave Matt a big smile and gave him what he needed me to say, “How about we go in search of the store this summer?  We’ll take a day and drive to Bristol – sound good?” Iasked. “Yes!”  he replied and pumped his fist into the air above his head.  Mission accomplished. The energy of his joy completely filled the air around us. I have always been very observant of my son and over the years I have become quite good at deciphering all of Matt’s communication forms.  Communication goes both ways; I teach him how to converse verbally and he teaches me how to converse silently. Our conversations usually contain few words and yet we communicate very well. This deeper form of interaction has allowed me to address that which scares him, that which bothers him and that which makes him happy.  But yesterday was a first.  His excitement was so powerful that he had to whisper it to me. I knew I had just witnessed something I had not seen in Matt’s 27 years – the precise moment in time when his joy and his words had finally made it past the road block on his thoughts- to- words neural highway.  Not only did he pass that road block, he sped past it so quickly that his words sprang forth and just bubbled out of him in the most powerful way. The long held secret had been released …finally. I was so touched by the moment that I had to fight back the tears as my heart soared.  It touched me in a way that is difficult for me to explain (and I have no language road blocks).  All I can tell you is that the whispered secret of his heart-felt desire was more powerful in its delivery than shouting it from the rooftops ever could be. It was a whisper.  A restrained but excited voice that had found a way through the road block where nothing else could, and I was there in that moment to hear it slip past. I learn something new about my son every day, even 25 years after the diagnosis of autism.  A small step forward . . . every … single … day. The sun is coming up and I am wondering, “What wondrous thing shall I witness today?”  Of course, I won’t know until it happens.  And although right now this new day has not revealed it’s secrets I do know that some secrets, especially whispered ones, are definitely worth waiting for.

There are times when I think Matt walks with an angel on his shoulders. This week, my husband was offered a new position that would require him to work every Friday through Sunday and in exchange would pay him a great deal more.  Our first response was “when would we see each other?”  That was replaced soon after with the thought, “oh my, Matt would have a back-up for every single day”.  You guessed it - we decided he should take it. It took about 5 minutes to decide. That got me to thinking and reflecting back over the years and made me realize that this is no coincidence.  Every step we take, every move we make, Matt has always been the blessed receiver of each new circumstance.  Over the years Matt was met with kindness, compassion, and new experiences.  Each off-shoot of our struggles and financial upheavals had always worked out well for him.  He seems to naturally attract people that show him a bit of kindness, a bit of help – always just the right people at just the right time. In our turmoil and chaotic life we have been able to look back and see how even the loss of jobs sparked new developments that fit perfectly with what Matt needed at the time. Let me give a few examples...... There was the perfect interaction between myself and Matt's teachers over the years, from preschool to high school. I found teacher's that would listen to my concerns, and although they were skeptical, allowed for the possibility that there was more to Matt than meets the eye. My grandma always told me you can get more with honey than with vinegar and I rarely raised my voice and never started an interaction with anger.  As a result, confrontations were few, acceptance and a willingness to go beyond the normal procedures were more apt to happen and Matt felt the benefit every step of the way.  That’s not to say I didn’t have my moments –I pushed when needed, even got angry a few times in order to relate what I felt needed to be done – but they were few and far between.  The teachers knew I would never give up and instead of fighting or arguing they learned and put into practice the methods that gave my son a fighting chance. But nothing was just given to him – ever.  I never wanted that and they knew it. I needed to know what Matt could really do and what he couldn't do, so there was no "easy pass" and they respected me for that. They knew I wanted Matt to learn, not to be babied or get a grade for a grade’s sake.  He was intelligent in many ways and once they saw that autism does not mean low IQ they went for the creative instruction. Teachers from the previous year would help the teacher of the next year – I admire them for their concern and upholding their educational standards.  Matt's education was also blessed with 2 very wonderful aides that bonded to my son as if he were thier own child. They always had his back – Matt’s surrogates while at school.  Don’t get me wrong, it wasn't always a walk in the park, but it was made so much easier by the people that came into my son's life year after year. Even his bus driver was a blessing.  His bus driver, Mr. Jackson, drove Matt’s special education bus throughout his entire school career.  Mr. J. was a gruff elderly fellow who saw something in my young son that immediately attached him heart and soul. He was always on the lookout  for signs of distress, and never allowed anyone to come between Matt's bus ride routine and his destination. If Matt cried about anything there would be hell to pay.  When retirement came he decided to put it off one more year in order to drive the bus for Matt in his last year. Such was the bond between Matt and Mr. Jackson. There was an exceptional big brother, who taught Matt games and interactions and became Matt's focus as to how to act, what to say, and most amazingly became the anti-bullying body guard. My oldest son, who as a senior had his handicapped little brother enter the same small school, did not see his little brother as an embarrassment. Instead, there was a fierce bond and a protection factor that prevented bullying, showing no fear to anyone.  Misconduct by another person - regardless of whether they were student or faculty - were met  with the wrath of the outspoken and fearless older brother, always putting his brother's feelings and safety first.  My fears of bullying slipped away as his older brother had influenced an entire school. Even after he graduated Matt had “buddies” and teachers who took the place of my older son, stepped up and took an interest in his safety, in his feelings, and especially in Matt as a person – not just someone with moderate /severe autism. As for me, my job took me from a career in the medical field to one in teaching where my schedule actually fell in sync with my son's and awareness could be disseminated to a new generation - a generation who would know another individual with autism at some point in their lives - possibly in their own child. As my schedule became steady my time to teach Matt increased.  The bold strides he made, the accelerated progress of those years were a culmination of so many new experiences and chances to teach him new things because I had the perfect schedule and more opportunities to meet his needs. Even these past 6 years with alternating periods of joblessness and contracts for my husband has allowed his search for full time work to provide a way for Matt to experience new places.  Going with my husband took Matt away from home for weeks on end, practicing for life on his own. It also provided time for Tom to get to understand and communicate better with Matt and to become exceptionally close. And now - as Matt prepares to move - my husband's new work schedule will be the complete opposite of mine. What that means to us is that Matt will have one of us there for him no matter which day, no matter which hour, we will be there to support him when he needs us, to help him and encourage him to go beyond what anyone else had ever dreamed possible, but many came to dream with him just the same. Yes, I think Matt has had an angel on his shoulders for a very long time. Long ago when he was only 5 years old, I was watching him get out of his bus seat, grab his pack and head for the door when he turned his head, said something and gave a short wave behind him. There was no one on the bus except the driver - and he was up front in the opposite direction. As I held my son's hand and walked him back to the house I asked him who he had waved to. He said only one word – “angel”. Matt may not see that angel anymore, he may not wave or speak to him, but that angel is still there - watching out for my son, turning our lives upside down - sometimes for years on end - to make Matt's life the best it could possibly be. My prayers for my son - from his diagnosis to the present - had always been to give my son the chance to be who he needs to be. That prayer had been slowly answered in a thousand little ways over the past 27years.  The steps were so small, so seemingly chaotic that it never occurred to me then.  I never saw it back then.  But I know now -  God sent an angel.