It had been 12 years and never a lie, not one. How many parents can say that about their child? As Dr. House (from the TV show) would say, “Everybody lies”.  Autistic children were at one time thought incapable of such stealth and critical thought.  I found that was not the truth.  Sometimes it takes a bit longer to learn how, but everybody lies - even those with autism.  It took 12 years before I actually caught my autistic son, Matt, in a lie. Prior to the big event – the telling of a simple lie – I had assumed Matt was incapable of such a dastardly deed.  Up to this point in time, if something happened and it needed explaining, Matt was the person to go to because he always stated the facts – and just the facts - with no embellishments at all.  Whenever I would get after my oldest son, Christopher (the usual suspect in these matters), the excuses and explanations were usually some wild tale - which of course, brought about immediate suspicion.  At these times all I had to do was turn to Matt and ask him if the tale was true and Matt would give me the facts. Matt never showed signs of being uncomfortable in this position.  To him, the world was either black or white, and the current tale Christopher wove was either true or false.  “Um, I think Chris did it”, came out very matter-of-fact.  He would then provide the details and the jig was up.  My oldest would reply indignantly, “You always believe him over me!” Christopher was then usually  “grounded”.  Disgusted by the whole situation, Christopher would stomp to his room. I’m sure he felt betrayed, ratted-out by his little brother. It was like watching a scene from some old gangster movie.  The glare from Christopher could have easily been interpreted as, “Look you, you squealed to the coppers, you dirty rat. Someday you’re gonna get yours”. The world of black and white changed to gray with Matt’s first lie. I was walking past Matt’s room and noticed something odd. Matt was playing quietly on the floor and next to him was an old WWII army helmet – which belonged to my husband, Tom.  The item was kept in his closet in our bedroom.  I stopped and looked at Matt and wondered, did Matt actually go in our bedroom and rummage around in our closet?  Matt looked up at me, waiting for me to say something.  Since I always said something to him as I passed his room, it was no surprise to see this expectant look on his face. “Did you take this?” I asked, walking over to pick up the helmet. The look on his face darkened. “Um,no”, he said softly.  I tried again, “Matt, how did daddy’s helmet get in here?” I waited for the details in black and white as usual.  Matt looked right at me and said, “I think Chris did it”.  Somewhere down the hall a frustrated “Ha!” arose followed by a hardy laugh from Christopher, “I did not! Matt, you little stinker!” Of course I knew Christopher didn’t do it.  Matt was the one that loved the army gear.  He had developed a love for anything army over the previous few years; combat video games, WWII books and films, and he even drew army tanks and battle scenes in his art (I’m talking reams of paper depicting every type of battle imaginable!). I had no doubt as to who took the helmet. It was Matt who liked to wear the helmet, the flak jacket, the coat, and carry a gun (a nurf blaster). Tom often retrieved these items from his closet just so Matt could pretend to be a soldier. I knew at once that Matt had just lied. Matt... just.... lied! The enormity of this began to register. Matt had just lied, he really lied! I had to scramble to think of what to do next. I knew that telling him he was bad for having lied to me would immediately result in tears and confusion because Matt has always thought of himself as perfect. To even imply he wasn’t was asking for trouble.  His self esteem was the foundation that determined whether any type of learning could proceed. Low esteem and Matt would withdraw, preventing any learning to take place.  High self esteem and he was proud to show you what he knew and he was open to learning new things. I was constantly building his self esteem. Matt knew he was different and he fought it daily, wanting to be perfect. For example, if I told him he did a great job, he would simply agree with a “yes”. If I praised him for completing a task, he would smile and agree with me – “yep, I’m the greatest”. When I would praise him and tell him he was smart, it would elicit a “Yes, I am”.  Unfortunately, telling him that he lied would signify imperfection . . . a flaw.  Recognition of a flaw was a trigger for a meltdown. Yet, I knew the terrible deed had to be done. I had to tell him lying was bad. Let's just say he didn’t take it well. The tears and anger surfaced immediately, and the anger was pointed directly at me.  “No, momma, you lie!”  Wow! I didn’t see that one coming. What great deflection!  It was so unexpected that it caught me completely off guard.  “I didn’t lie, when did I lie?” I stammered.  I had immediately been put on the defensive by my 12 year old son. He proceeded to unveil a long list of situations and events as examples of my lying prowess; I said we would go a certain place and we hadn’t, I said I would buy him a certain toy and I hadn’t. The list kept going.  My God, this kid had been keeping score for a very long time!  I was flustered.  He had artfully turned the conversation around and made me the bad guy – and I felt it.  In order to get the focus back on him I knew I had to first own up to all my misgivings, admit I had indeed “lied”.  I then apologized for my lies and asked his forgiveness.  That settled him down to a point where we could now at least discuss the situation calmly. We talked a long while. In the end he understood that he had lied and needed to tell the truth.  He gave me the detailed rundown, the black and white, of the entire sequence from his room to Tom’s closet and back to his room to retrieve the helmet.  I was actually relieved to know he would still do that. Once he was calm new learning could take place. He learned the closet was off limits and that he could not take things from our room without asking.  He learned lying was a bad idea and being caught in a lie was very painful indeed.  I also was open to learning new things.  I learned that I needed to keep my promises better.  If I told him we would go somewhere, then we would.  I also learned that Matt was just as capable as any other child to skew the lines of truth, and another misconception about autism went the way of the dodo.  Communication took a new direction for both of us. I never again asked Matt to squeal on his big brother. Matt’s earlier expression of  “I think it was Chris” under went a metamorphosis to “Christopher did it!” – a private family joke.  A  Frisbee on the roof? Christopher did it.  Toilet stopped up? Christopher did it. Global warming? Yep, Christopher did it. Christopher took it all in stride and enjoyed these tales of dasterdly deeds and superhuman evil doings and would eagerly claim to be the mastermind for even the wildest of tales. Matt would laugh at all the tall tales and actually took pride in revealing the ones he himself had done, making sure we knew the real circumstances in black and white. “No, I put the Frisbee on the roof” Matt would argue. “No, I did it!” Christopher would shoot back, bringing another round of laughter between them.  This interplay of fantasy and fact actually brought more than one bonus – it allowed Matt to see that he could tell the truth without getting into trouble and that his imagination was limitless.  It also opened up another door to communication and interaction for Matt with each member of his family.  This meant that socialization skills, the next step in communication, was also enhanced. This was 14 years ago when Matt was only 12 years old.  Autism awareness did not exist on any meaningful level back then.  No one knew an autistic child could do such wonderful things as imagintive play, or feel any remorse or guilt or empathy.  Therefore each tiny glimmer of these things were light-bulb moments for me and my family. Dr. House was right - everybody lies.  Even the tiniest of white lies is still a lie.  The discovery of a simple lie- while not a big deal normally (after all, parents deal with it all the time) – was an earth-shaking moment for me.  This simple act coming from my young autistic son confirmed what I had long suspected - he did “feel”, he did “think”, he did have an “imagination”.  Remember, this happened a long time ago and back then it was widely thought that autistic individuals were incapable of such human characteristics.  So when it happened, it was a really big deal.  I was proud of Matt’s first lie, just like I was about his first step and his first word. Truth be told I even did a little dance when he wasn’t looking, releasing my inner joy in a moment of immense satisfaction for having never believed the autism dogma of the time.  My son was different – yes, wonderfully, uniquely so – but he was not less. The telling of a lie – a very human trait – was a moment to celebrate a new found inner peace of what it actually meant to be autistic. My eyes opened.  The world seemed brighter somehow. And yet, the only thing that had changed was that Matt had told a lie. . . .a wonderful little lie.

As Christmas approaches I can't help but reflect on the years past and how my son Matt has changed in his own way to embrace the spirit of the season.  Matt is almost 26 yearsold, so there's plenty to reflect upon. As I thought about all of our unique experiences I wondered, "Do other parents of autistic children have this much fun?" I use the word "fun" because looking at it from my point of view it would all make such a great movie, a comedy I think, about learning the true meaning of Christmas. Don't get me wrong, there were a few years with too much family drama.  Some were budget-breaking extravaganzas, while others were completed on a shoestring financially.  Some were tearful - due to overwhelming joy, and others tearful because they were absolutely heart-wrenching.  Yet all, every single one, ended with the warmth of a love-filled home, smiles on children'sfaces, full bellies, and plenty of unforgettable (and sometimes pretty hilarious) memories. We always went on a drive to see Christmas lights and decorations on or near Christmas Eve and we always waited to put the toys and gifts under the tree until after the kids were asleep.  This was a challenge as every year for 10 years Matt would camp out in the hallway with his pillow, blanket and fan (he has slept with a humming fan next to his head all his life) to await the arrival of Santa (maybe catch a glimpse) and we had to traverse this blockade without waking him.  It was a 2 person job - a team effort - just to get the packages from point A (bedroom closet) to point B (under the tree.)  Matt never knew, never awoke even once and it kept the magic of Christmas alive, and the illusion of presents just suddenly appearing under the tree safe for another season. There was the year of my divorce where I had nothing to give my children, no money to buy gifts and no tree decorated and blinking.  Just days before Christmas friends and family got together and delivered a small decorated tree, supplied gifts for my children and took us into their home for a holiday feast.  Just days before I had been caught crying by Matt. He responded by crawling into my lap, putting his hand on my face and said "momma" for the very first time. It turned out to be one of the best Christmases ever for me. There was the first Christmas after autism set in when Matt loved the boxes more than the toys that came in them. There were several where he fought Santa tooth and nail at the Mall, and another where the one toy he wanted was the one toy we searched for in store after store for weeks to no avail and had to leave a note under the tree that promised one would arrive soon.  The Christmases after he could write were much better because we encouraged him to write to Santa (you know,that bearded guy he fought tooth and nail just a year before).  The letters gave us insight to what he really longed for and sent us on a mission to obtain said items early in the season to make sure a note would not have to go under the tree ever again.  Matt asked for a wide variety of items over the years; building blocks and Lego kits, Ninja Turtles, Ghostbusters, Jurassic Park vehicles, Toy Story action figures, Thomas the Train VCR tapes and train accessories, space shuttle models, airplane models, a Big Wheel, a bike, Home Alone tapes and art supplies, books, clothes (as a teenager he became aware of his appearance and actually wanted clothes!), and sports paraphernalia for Virginia Tech.  Take a look at that list again - nothing in it says autism . . . nothing. Church plays and concerts were met with tantrums and meltdowns - Matt hated the loudness of the music and although fascinated by the plays, did not wish to partake as one of the shepherds.  Instead, Matt crawled under the pews or walked the periphery or explored any region of the church he could get away with.  This meant I was constantly looking for where Matt was while trying to watch our other children perform.  And there were times when I had to miss something - a line, a song, a part of my other kid's holiday, to run after or console a weeping Matt.  But children of all ages act out at times or are afraid and must be consoled. I would wager that most parents at one time or another miss their other children's stuff too.  Autism doesn't cause the problems -childhood does. And while visiting Santa was traumatic as a small child, he finally did grow a desire to talk to the big guy in the red suit and it evolved almost overnight into a must - do ritual. Did it really matter that he was now 10 - 12 years old and twice the height of the other children in line? Did it matter that he would only stand next to Santa and talk, not sit on his lap?  It never fazed Santa, it never fazed Matt and it never fazed us. Then one year it happened - Matt no longer wanted to see Santa.  He had become skeptical of the magic tale and he needed something more. It was finally time. We all know it will happen and we all know we have to eventually break the news to our kids, but how you do it matters - it matters a lot.  Breaking the news of the childhood lie wassomething I had thought about for years - literally.  When it came time to sit him down I was ready.  I told him that little children believe in a Santa Clause because it is magical and fun.  I told him that as a child becomes an adult they know something is amiss - this is because they get smarter.  I told him that adults are Santa and when they become adults it is their job to keep the magic a secret and be the Santa for others.  Matt especially liked this idea.  He would be the secret Santa and keep the magic alive - he took this responsibility to heart. Every year since our talk Matt has been the essence of the Christmas spirit.  He hunts for items for each family member and wraps them and puts them under the tree.  Matt even buys for himself.  He wraps it up and puts a tag on it -to Matt from Santa - and on Christmas morning he opens the gift that he himself wrapped and is wonderfully surprised and excited to find exactly what he wanted.  His joy at watching Charlie Brown and Snoopy, the Grinch and Rudolph are contagious as well as his excitement at decorating a tree, stringing lights and wrapping gifts. Matt lights up our home and our hearts. Our other children are all grown up and moved away into their own homes and are creating their own season of magic. Yet even with our children grown and our house mostly empty we still have plenty of the Christmas spirit lighting every dark crack and crevice.  Matt reminds us daily that it is love that matters most - not the gifts or twinkling lights or Christmas songs but the deep desire to give the gifts, wanting to display the lights and to sing the songs that makes it all so magical.  Autism does not prevent the desire and it does not prevent the love from being felt.  Autism is just the surface.  What is inside each of us is what matters, autistic or not.  For my husband and me, Matt makes Christmas, Christmas. I know it sounds too warm and fuzzy to some of you.  I can assure you it was not always this way.  We felt the aloofness of extended family members, the constant veil of stress, and jumped the hurdles that appeared almost daily from out of nowhere.  But that was "then".  Something changed along the way and it wasn’t just Matt - it was me too.  I am now the one who rides the waves of autism with him taking away from each experience the comedic factor and laughing away the conformist part of me that used to think everything had to be just so perfect.  I understand now that life really is what we make of it – should Christmas be any different?  Enjoy the quirks, survive the stress, and be ready to look back and laugh.  Think of the stories you could tell! Matt just finished wrapping another gift he bought for himself and placing it beneath the tree. I can't wait to see his surprised and joyful expression when he opens that same gift on Christmas morning! It's Christmas - autism style.

There’s so much variance in autism that sometimes it’s difficult to connect with others having similar problems.  Some autistic individuals have food allergies and gut problems, some have seizures, and some autistic people have more than one disorder piled onto their autism. The possible problems that can accompany autism seem infinite, and yet with all the variances on the spectrum I have not come across any mention of memory loss. I have been searching for information on memory loss in autism for quite some time, but alas, I have been unsuccessful in my quest.   It occured to me that Matt may be alone in this aspect of his autism.  Is he? Many autistics have a great memory.  Matt has always had a wonderful ability to retain scientific facts and thousands of snippets from history.  He can learn how to do something very quickly by recalling directions almost word for word. He has had this gift as long as I can remember.  Unfortunately, his memory for people, places and events of his childhood are gone – completely gone.  He has no memory of being a young child and cannot recall an instance of his life prior to the age of 10.  Is this because Matt, my son, is moderate / severe on the autism spectrum?  It’s not easy finding others with the same degree of autism to ask.  Most autistic people I come across on my search are those on the milder side. They are articulate, in both speech and in their writing. None have ever mentioned memory loss – not one.  I assume that if I actually met someone more like Matt, someone very autistic, that they would have greater difficulty in their ability to converse or write or possibly even understand my question, but I would at least attempt to ask it.  I know I could be wrong, but I may never get the chance as the more severe cases are still quite rare.  If this is the case, that moderate to severe autistic individuals can suffer memory loss of their childhood, then I feel it’s something I need to put out there if only to make more people aware that there is even a problem in this area. It began when Matt was on the cusp of puberty.  Many of his autistic behaviors had disappeared by then; hand-flapping, spinning, echolalia, avoidance of eye-contact, need for routines, and so on, had slipped away one by one.  He still loved repetition in both drawing animated characters and in watching his favorite movies and cartoons, but I understood that this was his way of teaching himself conversational speech and social interaction. I never thought of it as detrimental (and I still don’t).  He was doing well in school and was on the Honor Roll every time.  He needed time to himself each day and I gave it to him. He seemed so happy and content. He was more aware of his peers and wanted to dress like them, walk like them and was attempting more complex interactions with long-time friends.  He even had a few sleep-overs during that time with a friend coming to our house one night and then Matt spending the night over at his friend’s house.  Life was not perfect, but hope did shine brightly. Then one day I heard sobs coming from his room and went to investigate.  Matt was sitting on his bed crying.  I sat next to him and put my arms around him and hugged him tight.  “What’s wrong, Matt?”  I asked as I rocked him slowly side to side.  “I can’t remember,” he replied.  I assumed he felt sad but didn’t know why.  Sometimes hormones do that at puberty and in my quick assumption that he was experiencing a prepubescent hormone surge I didn’t prod him for a deeper explanation.  He continued to cry, the anguish surfacing in giant waves of despair were tearing at my soul. “I don’t remember ANYTHING!” he screamed.  It took me by surprise.  Not anything?  What does that mean?  “What do you mean Matt, that you can’t remember anything?”  And so the conversation began in which my son explained to me that he really could not remember being a child.  He could remember last week, last month, and some of last year, but the further back we went the more obvious it was that most of his childhood memories were gone - all gone. This was not a one-time instance.  Over the next few years Matt had more days of shear panic where he couldn’t pull up in his memory even important events he wanted desperately to hold onto. When the all was said and done Matt had lost everything before the age of 10 and 70- 80% of everything from age 10 to graduation at age19.  We’re talking years of memories slipping away and although new memories were being formed everyday, only a few were actually staying in his mind for recall. Calming him, comforting him during this time was heart breaking for me too.  I couldn’t imagine how awful it must feel to not know something about your past.  I would bring up certain instances from his past, trying to jog his memory, but although my intentions were good, it only made him feel worse.  Amazingly, Matt stayed on the Honor Roll the entire time he endured the destruction of his own personal life history.  It seems his short-term memory was still intact and as a result, grades remained stable. The turmoil ended as adulthood set in and he again has memories of people, places and events – but only of the last 8-10 years. I think about it – almost obsessively. There are a few possible culprits that could have caused this dramatic change in his memory.  During that particular time Matt had concurrently gone through puberty, had pneumonia (and had to be hospitalized for almost a week on IVs and antibiotics), and had a pneumovax shot shortly after his recovery.  Since Matt is the only one who knows when it all began and he can’t tell me I am left to wonder.  Was it one of those?  Was it the combination of all three? So I research the blogs and the autism sites trying to find a hint that other autistic children have experienced something similar only to find silence in this area.  There’s no mention of this terrible aspect of his autism in others that I am aware of and yet, I can’t help but feel someone else had watched this heart-wrenching scenario playout in their own child.  In my soul I feel there are others.  Are there? I have come to the conclusion that what I must do is just ask straight out – have you ever known anyone with autism to suffer childhood memory loss?  As a parent or a grandparent of an autistic child, I know you understand why I need to know, why I have to ask.  So I am asking you, from one parent to another, are we alone?

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

Matt really wants his independence.  Working toward this goal is a huge undertaking.  So far, Matt does his own laundry, cooks his own meals, does pretty good in the area of personal hygiene (but needs work), and keeps his rooms fairly clean.  He is able to grocery shop, keep track of his expenses, and is currently attempting email communication.  That last one is difficult as Matt is just not much of a communicator – he’s autistic. Yet, if Matt is to live an independent life he must be able to get where he needs to go and that means either learning to take a bus, a cab, a subway or drive himself.  We live in a very rural area of Virginia - there are no buses, subways, or cabs. That means Matt needs to learn to drive. When he was a junior in high school he took Driver’s Education and did real well on the written part of the test. Putting him behind the wheel however, was not even considered.  Matt just was not ready for such a big step.  He’s ready now, 7 years later.  Our first consideration was where to take him.  We decided on an old, secluded, and basically abandoned outlet mall to let him practice driving - away from other traffic and distractions.  Teaching Matt to drive is not the same as teaching a regular child to drive but it is similar.  The main difference is how long it takes.  Each step is a lesson in patience and practice.  For those that have taught their normal children to drive I salute you.  Teaching a child to drive – any child – is scary.  Now, take that feeling and multiply it times 10 and you get close to how it is with an autistic child. Matt has a routine. He gets behind the wheel and checks his mirrors.  He fastens his seat belt and turns the key.  He sits a moment in silence, feeling the hum of the motor and psyching himself up for the practice run.  He turns, slowly, deliberately, to look over his shoulder, positioning his right arm to the side and placing his hand on the passenger seat. He puts the car in reverse and backs out of the parking space –at a snails pace.  Once accomplished, a whispered sigh of relief slips out and he faces forward.  We sit a few seconds as he mentally prepares to go again.  Matt puts the car in drive and applies the gas.  We creep along to the end of one small parking lot and he steps on the brake.  My body is jerked forward, then back.  “Good job, Matt” I say as calmly as I can, “Now let’s turn right and go up the hill”. For our first several practices Matt never got above 5 mph.  Then one day as we slowly climbed the hill I encourage him to go faster – all the way up to 20 mph.  His foot pressed down a little bit and slowly we climbed to 20mph.  He looks down to watch the speedometer and forgets to watch where he is going.  I gently remind him to look at the road.  He is startled by the revelation that he forgot to watch where he is going and I could see a frown start to form.  He gets upset with himself for making a mistake, for not being perfect. Each time we go, Matt practices parking, backing up, driving forward, using his turn signals, and by the end of the session he is on top of the world.  Each time Matt parks the car he jumps out to admire his new found skills.  If he is between the lines and pleased with himself, his facial expression is one of triumph and he juts his fists into the air as if to say, “YES!”  If not, his brow deepens and he mutters to himself – no doubt scolding himself for not having done better.   It’s a slow processas he his cautious and nervous and trying desperately to be perfect. I really hadn’t given much thought about his autism other than the slow pace at which we were progressing – that is not until a bee flew in the window.  Matt has always hated flying insects – so much so that he hates going outside for any length of time.  He has a real fear of bees.  No, Matt has never been stung, but his fear is so intense that one would think so. I was abruptly reminded of this fear when the bee appeared. Matt was slowly driving down one of the parking lanes when out of nowhere a bee flew in his window and immediately flew back out again.  In that split second, Matt took both hands off the wheel, covered his face and unbelievably, kept his foot on the gas. Matt had lost all focus.  The car was out of control.  “Matt, BRAKE!” His foot stomped the brake.  “Hands on the wheel!” His hands went to wheel. He stopped the car and sat there visibly shaking.  Matt was surprised at what he had done and continued to shake.  His mind was racing and I could see he was angry at himself.  Matt hates it when he is not perfect.  I could almost hear his thoughts . . ."Loosing control of the car for even a split second is unacceptable . . . and wrong.  How could I make such an awful mistake?"  His expression of disgust told me he was berating himself mentally.  It took a few minutes of gentle conversation to calm him down. “O.K., Matt, we know that you will need to keep your windows rolled up.”  I said. “If you’re in traffic and a bug flies in you have to remain calm or you’ll cause an accident, so to not have that happen you will need to keep your window up, OK?”  That must have sounded reasonable to him as he began to calm down. We continued to practice before calling it quits for the day.  I wanted Matt to end his driving session on a high note – not on the mistake he had made.  I waited until he had parked the car perfectly between the lines, jumped out and thrust his hands in the air in triumph – the sign that he was pleased with himself again.  A few days later when we went on our next practice drive, the first thing Matt did was roll up his window (and simultaneously let out a small “whew”). Teaching Matt to drive is emotionally difficult.  I thought I had thought of all the “what ifs”. What if he hits a deer, or runs off the road, or has a flat tire, or runs out of gas, or pulled over by a police car or his car breaks down.  Unfortunately, I never thought “what if a bug flies in the window”.  Still, with all the hurdles we must get over we have to start somewhere.  This is going to take a very long time –possibly years.  And as much as it scares me, as much as I want to hold him close and protect him, I know I must let him have his chance to be free and independent. I keep in mind every day that each driving session, each small lesson learned is one step closer to the day he becomes independent.  I just hope my nerves can stand it.

Grief can be an overwhelming emotion.  It’s a feeling of loss which pulls from both guilt and sadness.  It sits deep within us wanting to get out, but we tend to block its path.  We hold onto it, playing memory tapes over and over in our mind as we adjust to the change in our life. We understand what a person is feeling who is dealing with grief because of our own experiences with it, but we should not assume we know how each person should express their grief - that is a misconception.  Grief, in all its complexity, can not be experienced the same way in any two people.  It’s only logical then to assume that a person with autism will have their own way too.  My son Matt, who is autistic, has had to deal with grief more than once in his short life of 26 years. The first time he had to deal with death was as a young child around the age of 9-10.  He had a cat named Sweetpea whom he loved tremendously. We also had dogs at that time, but they were jumpy and loud and Matt had little interaction with them.  The cat was different.  She approached him slowly, made her pleasure known in soft purring sounds and was content to sit near him without annoying him. Unfortunately, having a pet, loving a pet, becoming attached to a pet also means you are willing to undergo the grief that will come when the pet dies.  We didn’t think about that when we brought her home.  We only thought of the smiles and laughter and the interaction Matt would have with a living thing. Only a few years had gone by when the unthinkable occurred –Sweetpea was hit by a car.  Not wanting Matt to endure the grief, we went ahead and buried the cat, and told him of her death afterward.  We were not prepared for his anger.  Why did we put her in the ground?  She can’t breath!  She is afraid of the dark!  He could not be reasoned with and could not be consoled.  We did the only thing we could do – we dug her up.  After we removed her from her grave and un-wrapped her body we brought Matt out to say his goodbyes.  She looked as if she was sleeping and he gently reached over to pet her. His hand quickly pulled away a split second after, realizing from the cold, stiffness of her body that she was indeed dead.  Matt and I talked it over and over for days afterward.  He had questions and sadness and quilt and I did my best to answer him, comfort him and take his quilt away.  I learned a big lesson from that experience – never hide the truth, even if you mean well. Shortly after, we got him another kitten with similar markings and he named her Sweetpea II. Sweetpea II is still going strong at 14-15 years old and is still his beloved cat.  But someday . . . well, we know what someday will bring. Over the years I have noticed that Matt deals with an emotional situation very similar to his older brother, Christopher.  This really comes as no surprise to me as Matt has idolized his brother his entire life. If Christopher could do something, well then Matt could too.  It was this desire to be like his older brother that spurred Matt into overcoming so many obstacles autism set before him.  I like to think of them as my bookends of a full life; Matt is the light of my life and teaches me to see deeper, find the simple joys, and live happy everyday, whereas Christopher is my pride and joy and holds within him a clear-cut view of right and wrong.  He stands up for what he thinks is right with a tenacious determination and overwhelming presence.  I am in continual awe of both my sons. Emotionally, Christopher holds his grief deep inside.  He guards his feelings.  They are personal and not up for public review.  He thinks deeply and feels deeply, but on the outside he appears strong and steadfast.  He will discuss with me his thoughts when and only when he is ready to discuss them, receive comments, listen to advice, or just needs a reaffirming hug.  Christopher was only 2 years old when his brother Daniel died. He attended the funeral.  He didn’t cry, didn’t seem to know what was going on and I didn’t fully explain it either.  Two years later as we were driving to his grandparent’s house Christopher asked me a simple question, “How did Daniel die?”  I explained very simply that he was born too early and his heart just wasn’t strong enough to keep going.  He thought about that for a minute and then very sincerely suggested, “You can give Daniel my heart and then he wouldn’t have to die”.  It hit me like a ton of bricks.  My son was willing to give his life for his brother to take away the sadness that I carried with me.  How long had he thought about Daniel?  How long had he been watching me deal with the grief?  I didn’t knowingly cry in front of him, but he knew I still carried that sadness deep inside.  This same gift of empathy showed itself repeatedly over the years as Matt grew up. He taught Matt to interact, play games, tell a joke – the list is as long as his life.  Christopher had given Matt his heart.  In return, Matt looked to his brother on how to act; in the car, at a restaurant, at school, and around others.  Christopher never thought about Matt’s focus on him – not until I told him years and years ago.  In retrospect, Christopher has always been Matt’s guiding light. Matt knows this instinctively about his brother.  He holds himself to the same standards he has for Christopher. After all, if Chris can do it, then Matt could do it. Both take after me in the need to be alone when grieving.  I do not wish to share my grief until I am ready and that may be a while.  We are different in that initial grief is tearful for me, (but then I put it deep in my heart and think it over for months and in the case of Daniel, years), but it is not for either of my boys.  Neither wears their heart on their sleeve.  I realized this when we moved to Arizona.  It was to be a temporary move as my husband had several contracts and instead of surviving apart, we all went together; Matt, Tom and I.  Christopher was grown and was going to take care of our Virginia home during our absence.  Matt seemed fine with the move and all seemed to go well. We took each day as it came, trying to make every excursion an adventure.  Matt never cried, never showed that he missed his cat, his home or his brother – that is until we started discussing a more permanent move.  Matt broke down and all his fears came to the surface.  He poured out his heart and told us he had been crying every night.  I had no idea of his inner turmoil.  Matt had kept his emotions secret.  Not long after this revelation we moved back to Virginia.  I had learned a valuable lesson again; Matt would not show his grief.  He would be strong (his notion of strength, not mine).  I would have to look deeper, even more than I already was, if I were to read that particular emotion in my youngest son. I remember when we got the call that their grandma was in the hospital.  We immediately packed and set off for Illinois.  Grandma had cancer and had been in remission for such a long time that we were caught off guard when it suddenly returned with a vengeance.  She was in intensive care.  There were tubes and ventilator noises and it must have been tremendously scary for both boys.  Matt did not want to enter the room.  He stood by door, taking quick glances toward grandma, and just as quickly turned away.  Christopher, the weight of the world evident on his face, walked in without hesitation.  I could see Matt’s eyes follow his brother and could almost hear him thinking, “If Chris could do it, then I could do it”, and after a few moments Matt followed him in.  How utterly brave he was to go into that room with all its smells and sounds.  But he did do it, because his brother did.  He knew he was suppose to go in that awful room because Christopher showed him that grandma was more important than the fear he felt. This brings me to today and the reason behind this story.  Our cat, Toulouse died yesterday of feline leukemia.  Christopher was a teenager when he found Toulouse,a yellow domestic kitten, in a parking lot. When he brought him in we were hit with the familiar line, “Can we keep him?”  How could we not? Toulouse soon became Christopher’s best buddy, and spent most of his time on his lap or at his computer.  They were inseparable.  Unfortunately, when Christopher grew up and bought a house he couldn’t take his best friend, his cat.  He feared he would run away with the new surroundings,and knowing how well he was rooted to our home decided to have us keep him.  Christopher’s beloved cat instantly became Matt’s favorite of our three.  He nick-named him “wild-cat” and loved on him even more than he had before.  This was his brother’s cat and he would be honored to take care of him.  Matt continued to treat Toulouse like the royalty he was.  Matt moved into Christopher’s old room and Toulouse kept his routine of spending much of his time hanging out in his same room, only now with Matt. We learned only a week ago that Toulouse had leukemia.  The vet brought him back from the brink of death but explained to us there was nothing more to be done.  We knew we would only have him for a short time.  I explained this to Matt.  Then yesterday Toulouse began having difficulty breathing.  He was dying and we had a choice – to let him struggle to the end or put him down.  We chose the later.  Again, I saw the weight of the world on my oldest son’s face. As time drew near to the appointment I realized both my sons needed time away.  I asked Christopher to please take Matt until it was over.  Matt knew what was happening and that the time had come.  He was relieved to go with his brother.  Before he left, Matt got his camera and took a picture of his friend, his beloved pet, then patted his head gently and whispered good-bye.  Christopher took Matt to town and we took Toulouse on his final trip to the vet. Christopher instinctively knew a diversion was needed.  He took Matt to get something to eat and then to get a video game - the perfect detractor. When we had buried him we called Christopher and they came back to the house. Matt poured his energy and attention to his new game. He needed to not think, not feel, not cry.  His game helped him achieve these goals. Christopher, needing to absorb what had happened, spent a moment alone at the gravesite. Today, I walked Matt out to the gravesite.  He tensed up. I told him Toulouse was buried there, pointing to the large rock that covered the site.  Matt took a step back.  His eyes moist, he looked but could go no further.  I told him that Christopher took a moment alone there yesterday and that when ever he needed to, he could do the same.  The tension eased a bit.  I told him I would talk with him when he was ready then I changed the subject.  He instantly relaxed, grateful not to dwell on it. Matt still has not cried. He told me he will not.  He is steadfast.  He is doing exactly as Christopher.  I am sure they will both cry eventually, probably alone and to themselves.  It’s very private and the pain is overwhelming. The waves can only rise to the surface of thought a little at a time.  I know, because of experience, that memories of Toulouse will surface time and again and sometimes tears will come and eventually, down the road, a smile.  Neither will openly grieve in my presence any time soon. Neither will want to discuss it – not for a long time.  I am glad I understand how my oldest deals with grief because it has allowed me to understand how Matt also deals with grief.  If I didn’t know and accept these variations on processing grief I would worry about how it is affecting Matt, wonder why he didn’t talk about it, wonder why there were no tears.   If not for Christopher, I would not know how to help my autistic son.  These are two very empathetic and deeply feeling young men.  There is nothing wrong in how they deal with grief – we each have our own way.  Matt’s just happens to mirror his brother’s.  I know that being autistic does not mean that Matt can not feel the pain of grief – on the contrary, he feels too deeply for words.  It does mean that I will watch and wait and exercise patience.  I will be ready for when it surfaces, and I know eventually we will talk, when the pain is not so intense.  Months, maybe years from now, we will talk about this beautiful, wonderful cat and we will come to peace – all of us, in our own time.  For autistic and non-autistic alike, grief is the most overwhelming of emotions.  Patience and understanding are required of those on the outside.  We learn to wait and be ready to lift them up when grief tries to pull them down. As intense as it can be, we are all willing to accept the eventuality of grief.  I know that I do because I want…no, crave, the experiences of love and joy. Matt chooses to enjoy the wonderful lives that enter his own and knowingly immerses himself in the warmth of their love – knowing grief is part of the deal.  How amazing is that?

Grief can be an overwhelming emotion.  It’s a feeling of loss which pulls from both guilt and sadness.  It sits deep within us wanting to get out, but we tend to block its path.  We hold onto it, playing memory tapes over and over in our mind as we adjust to the change in our life. We understand what a person is feeling who is dealing with grief because of our own experiences with it, but we should not assume we know how each person should express their grief - that is a misconception.  Grief, in all its complexity, can not be experienced the same way in any two people.  It’s only logical then to assume that a person with autism will have their own way too.  My son Matt, who is autistic, has had to deal with grief more than once in his short life of 26 years. The first time he had to deal with death was as a young child around the age of 9-10.  He had a cat named Sweetpea whom he loved tremendously. We also had dogs at that time, but they were jumpy and loud and Matt had little interaction with them.  The cat was different.  She approached him slowly, made her pleasure known in soft purring sounds and was content to sit near him without annoying him. Unfortunately, having a pet, loving a pet, becoming attached to a pet also means you are willing to undergo the grief that will come when the pet dies.  We didn’t think about that when we brought her home.  We only thought of the smiles and laughter and the interaction Matt would have with a living thing. Only a few years had gone by when the unthinkable occurred –Sweetpea was hit by a car.  Not wanting Matt to endure the grief, we went ahead and buried the cat, and told him of her death afterward.  We were not prepared for his anger.  Why did we put her in the ground?  She can’t breath!  She is afraid of the dark!  He could not be reasoned with and could not be consoled.  We did the only thing we could do – we dug her up.  After we removed her from her grave and un-wrapped her body we brought Matt out to say his goodbyes.  She looked as if she was sleeping and he gently reached over to pet her. His hand quickly pulled away a split second after, realizing from the cold, stiffness of her body that she was indeed dead.  Matt and I talked it over and over for days afterward.  He had questions and sadness and quilt and I did my best to answer him, comfort him and take his quilt away.  I learned a big lesson from that experience – never hide the truth, even if you mean well. Shortly after, we got him another kitten with similar markings and he named her Sweetpea II. Sweetpea II is still going strong at 14-15 years old and is still his beloved cat.  But someday . . . well, we know what someday will bring. Over the years I have noticed that Matt deals with an emotional situation very similar to his older brother, Christopher.  This really comes as no surprise to me as Matt has idolized his brother his entire life. If Christopher could do something, well then Matt could too.  It was this desire to be like his older brother that spurred Matt into overcoming so many obstacles autism set before him.  I like to think of them as my bookends of a full life; Matt is the light of my life and teaches me to see deeper, find the simple joys, and live happy everyday, whereas Christopher is my pride and joy and holds within him a clear-cut view of right and wrong.  He stands up for what he thinks is right with a tenacious determination and overwhelming presence.  I am in continual awe of both my sons. Emotionally, Christopher holds his grief deep inside.  He guards his feelings.  They are personal and not up for public review.  He thinks deeply and feels deeply, but on the outside he appears strong and steadfast.  He will discuss with me his thoughts when and only when he is ready to discuss them, receive comments, listen to advice, or just needs a reaffirming hug.  Christopher was only 2 years old when his brother Daniel died. He attended the funeral.  He didn’t cry, didn’t seem to know what was going on and I didn’t fully explain it either.  Two years later as we were driving to his grandparent’s house Christopher asked me a simple question, “How did Daniel die?”  I explained very simply that he was born too early and his heart just wasn’t strong enough to keep going.  He thought about that for a minute and then very sincerely suggested, “You can give Daniel my heart and then he wouldn’t have to die”.  It hit me like a ton of bricks.  My son was willing to give his life for his brother to take away the sadness that I carried with me.  How long had he thought about Daniel?  How long had he been watching me deal with the grief?  I didn’t knowingly cry in front of him, but he knew I still carried that sadness deep inside.  This same gift of empathy showed itself repeatedly over the years as Matt grew up. He taught Matt to interact, play games, tell a joke – the list is as long as his life.  Christopher had given Matt his heart.  In return, Matt looked to his brother on how to act; in the car, at a restaurant, at school, and around others.  Christopher never thought about Matt’s focus on him – not until I told him years and years ago.  In retrospect, Christopher has always been Matt’s guiding light. Matt knows this instinctively about his brother.  He holds himself to the same standards he has for Christopher. After all, if Chris can do it, then Matt could do it. Both take after me in the need to be alone when grieving.  I do not wish to share my grief until I am ready and that may be a while.  We are different in that initial grief is tearful for me, (but then I put it deep in my heart and think it over for months and in the case of Daniel, years), but it is not for either of my boys.  Neither wears their heart on their sleeve.  I realized this when we moved to Arizona.  It was to be a temporary move as my husband had several contracts and instead of surviving apart, we all went together; Matt, Tom and I.  Christopher was grown and was going to take care of our Virginia home during our absence.  Matt seemed fine with the move and all seemed to go well. We took each day as it came, trying to make every excursion an adventure.  Matt never cried, never showed that he missed his cat, his home or his brother – that is until we started discussing a more permanent move.  Matt broke down and all his fears came to the surface.  He poured out his heart and told us he had been crying every night.  I had no idea of his inner turmoil.  Matt had kept his emotions secret.  Not long after this revelation we moved back to Virginia.  I had learned a valuable lesson again; Matt would not show his grief.  He would be strong (his notion of strength, not mine).  I would have to look deeper, even more than I already was, if I were to read that particular emotion in my youngest son. I remember when we got the call that their grandma was in the hospital.  We immediately packed and set off for Illinois.  Grandma had cancer and had been in remission for such a long time that we were caught off guard when it suddenly returned with a vengeance.  She was in intensive care.  There were tubes and ventilator noises and it must have been tremendously scary for both boys.  Matt did not want to enter the room.  He stood by door, taking quick glances toward grandma, and just as quickly turned away.  Christopher, the weight of the world evident on his face, walked in without hesitation.  I could see Matt’s eyes follow his brother and could almost hear him thinking, “If Chris could do it, then I could do it”, and after a few moments Matt followed him in.  How utterly brave he was to go into that room with all its smells and sounds.  But he did do it, because his brother did.  He knew he was suppose to go in that awful room because Christopher showed him that grandma was more important than the fear he felt. This brings me to today and the reason behind this story.  Our cat, Toulouse died yesterday of feline leukemia.  Christopher was a teenager when he found Toulouse,a yellow domestic kitten, in a parking lot. When he brought him in we were hit with the familiar line, “Can we keep him?”  How could we not? Toulouse soon became Christopher’s best buddy, and spent most of his time on his lap or at his computer.  They were inseparable.  Unfortunately, when Christopher grew up and bought a house he couldn’t take his best friend, his cat.  He feared he would run away with the new surroundings,and knowing how well he was rooted to our home decided to have us keep him.  Christopher’s beloved cat instantly became Matt’s favorite of our three.  He nick-named him “wild-cat” and loved on him even more than he had before.  This was his brother’s cat and he would be honored to take care of him.  Matt continued to treat Toulouse like the royalty he was.  Matt moved into Christopher’s old room and Toulouse kept his routine of spending much of his time hanging out in his same room, only now with Matt. We learned only a week ago that Toulouse had leukemia.  The vet brought him back from the brink of death but explained to us there was nothing more to be done.  We knew we would only have him for a short time.  I explained this to Matt.  Then yesterday Toulouse began having difficulty breathing.  He was dying and we had a choice – to let him struggle to the end or put him down.  We chose the later.  Again, I saw the weight of the world on my oldest son’s face. As time drew near to the appointment I realized both my sons needed time away.  I asked Christopher to please take Matt until it was over.  Matt knew what was happening and that the time had come.  He was relieved to go with his brother.  Before he left, Matt got his camera and took a picture of his friend, his beloved pet, then patted his head gently and whispered good-bye.  Christopher took Matt to town and we took Toulouse on his final trip to the vet. Christopher instinctively knew a diversion was needed.  He took Matt to get something to eat and then to get a video game - the perfect detractor. When we had buried him we called Christopher and they came back to the house. Matt poured his energy and attention to his new game. He needed to not think, not feel, not cry.  His game helped him achieve these goals. Christopher, needing to absorb what had happened, spent a moment alone at the gravesite. Today, I walked Matt out to the gravesite.  He tensed up. I told him Toulouse was buried there, pointing to the large rock that covered the site.  Matt took a step back.  His eyes moist, he looked but could go no further.  I told him that Christopher took a moment alone there yesterday and that when ever he needed to, he could do the same.  The tension eased a bit.  I told him I would talk with him when he was ready then I changed the subject.  He instantly relaxed, grateful not to dwell on it. Matt still has not cried. He told me he will not.  He is steadfast.  He is doing exactly as Christopher.  I am sure they will both cry eventually, probably alone and to themselves.  It’s very private and the pain is overwhelming. The waves can only rise to the surface of thought a little at a time.  I know, because of experience, that memories of Toulouse will surface time and again and sometimes tears will come and eventually, down the road, a smile.  Neither will openly grieve in my presence any time soon. Neither will want to discuss it – not for a long time.  I am glad I understand how my oldest deals with grief because it has allowed me to understand how Matt also deals with grief.  If I didn’t know and accept these variations on processing grief I would worry about how it is affecting Matt, wonder why he didn’t talk about it, wonder why there were no tears.   If not for Christopher, I would not know how to help my autistic son.  These are two very empathetic and deeply feeling young men.  There is nothing wrong in how they deal with grief – we each have our own way.  Matt’s just happens to mirror his brother’s.  I know that being autistic does not mean that Matt can not feel the pain of grief – on the contrary, he feels too deeply for words.  It does mean that I will watch and wait and exercise patience.  I will be ready for when it surfaces, and I know eventually we will talk, when the pain is not so intense.  Months, maybe years from now, we will talk about this beautiful, wonderful cat and we will come to peace – all of us, in our own time.  For autistic and non-autistic alike, grief is the most overwhelming of emotions.  Patience and understanding are required of those on the outside.  We learn to wait and be ready to lift them up when grief tries to pull them down. As intense as it can be, we are all willing to accept the eventuality of grief.  I know that I do because I want…no, crave, the experiences of love and joy. Matt chooses to enjoy the wonderful lives that enter his own and knowingly immerses himself in the warmth of their love – knowing grief is part of the deal.  How amazing is that?

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

Best Friends Forever (BFF).  Who is your BFF?  Let’s define it first.  As I see it, a BFF is someone who knows you – very well.  This person loves you un-conditionally. They will be there by your side in good times and bad.  They are very special people because they can listen to you without forming judgments.  A BFF stands by you as your equal.  If you look around you will notice that most individuals have a friend or two – and if you look on Facebook, well, friends are listed in the hundreds (sometimes thousands!)  My autistic son, Matt, desires friends.  He wants to have someone he can hang out with, laugh with, shop with, and this desire is a natural one.  The majority of people need other people in their lives to feel whole.  Matt simply wants to feel whole. After high school Matt’s friends drifted away, as friends do.  There really isn’t a great place to meet new people, except maybe college, and we’re working on getting him to take more classes.  He needs the social impact of continued education.  But how do I help him until then? We live week to week on our income – no activities that require money can be considered.  We live in the country – we can’t even see our neighbors.  Can you see the dilemma? To make things more complicated, I am a natural hermit.  I like the seclusion of my life.  That makes me one of the few who spend as little time as possible with other people outside my own family. I really enjoy hanging out with Matt.  We shop, laugh, play Wii sports, talk about the future, discuss world events and the weather.  I teach him new things – and he teaches me.  We make a good team.  About a year ago I started telling Matt he was my best friend.  His joy in this knowledge was immense – Matt had someone who considered him their best friend!  At the time, Matt was traveling with Tom (my husband).  Tom took several contracts over the past year and Alabama and North Carolina were close enough to home (Virginia) that Matt could come home if he needed to. While he was away Tom was his BFF.  I would say, “Matt, you’re my best friend!” Matt loved hearing it.  Unfortunately, he also felt conflicted.  I could tell he had a problem.  “What’s wrong?” I inquired.  Matt would say, “Daddy is my best friend”. “That’s great!” I would assure him, “a person can have more than one best friend”.  After that, Matt enjoyed hearing me say it.  His answer was always an affirmation that he liked it – a simple “Yes!” and a hug. He’s been home since January – Tom landed a job closer to home. We are all together again and life is getting better. I had major surgery in January and then went back to work part-time.  The upside of this is that Matt and I have been spending more and more time together. He took care of me and helped get around – he treated me like I was fragile.  I learned just how deeply Matt cared about me.  I get stronger everyday.  Presently, I feel like a million bucks.  Life is getting back to normal.  In addition to our usual list of activities I have been taking Matt out for driving lessons.  A new challenge requires my focus to be a bit more concentrated on what Matt needs. My focus on him and his focus on me has allowed a chance to re-connect on an even deeper level. In addition, I realized just how much I missed him all those weeks he was away.  Matt is the light of my life.  When he’s away the world seems a bit darker, as if the color of life has drained away. Having him home I feel whole again. Feeling whole is what we all want. Last night, on the eve of Mother’s Day, as I was headed for bed I stopped in Matt’s room to tell him good-night.  “I love you, Matt.  You’re my best friend.”  I said. I gave him a big hug and a kiss. “You’remy best friend too” he replied and returned the hug. “Really?” I asked. I was honestly caught off guard. “Yes.” He said simply and gave me an even tighter hug. A BFF is a person that makes one feel whole. My son and I are BFFs – what more could a mother want? My heart is full.

This story is the follow-up on Matt taking his first unaccompanied stroll.  Matt is in North Carolina with my husband Tom (where Tom works) and I am at home in Virginia. Yesterday was the practice walk.  Tom gave Matt his own key and identification card and a key to the mailbox.  He also gave Matt a note for his wallet which provided all the emergency information.  Matt put it in his wallet without question.  Tom and Matt took a practice stroll together earlier in the day, turning left out of the apartment and walking to the mailbox.  From the mailbox they took a path that passed one of the swimming pools and circled around toward the front of the massive complex of apartments and straight toward the weight-room.  Matt practiced using his new identification pass to unlock the door and they scoped out the various equipment.  Shortly after, they strode back to their apartment and Matt got to use his entry key. No problems. Later that afternoon Matt decided it was time for his own walk.  He left the building and unexpectedly turned right.  Matt is a creature a habit.  Each time he has been out so far has been with Tom and they have always taken the exact same route.  Both Tom and I expected Matt would continue this same routine.  Tom watched from a safe distance as Matt disappeared around the next corner.  He never looked back. He walked with confidence and purpose.  His gait was quick.  Matt called me.  “Hi mama!” he exclaimed.  “Hi Matt!” I exclaimed back.  “Well, I’m on my walk!” I could hear the excitement in his voice.  This was his time. “Great!” I said, “I’ll talk to you later”.  “O.K, bye!” he returned.  Matt was alone, outside, in an unfamiliar town, taking a leisurely, yet purposeful stroll around his neighborhood.  I looked at the clock.  I paced. I played some computer solitaire and I thought about my son.  The phone rang again.  “Hi mama!” Matt exclaimed into my ear. “Hi Matt. Where are you now?” I asked.  “I’m back at the apartment” he replied. Really? So soon?  I looked at the clock again.  Only four minutes had passed.  He told me he had gone all the way around the complex.  I could hear in his voice how proud he was of himself. Tom called soon after. He told me how he had watched from the window as Matt turned right at the sidewalk.  He revealed how anxious he was when Matt disappeared around the corner - out of sight. I knew Tom must have been holding his breath.  I told him I had timed him and it had only been 4 minutes.  He told me he had timed him from when he left the building and it actually had been 6.  We both marveled at how fast he lapped the complex. Today, Tom is working. I asked Matt to please not go for his walk until after 4pm.  Routines are needed and at 4pm each day I should be home for his call.  The closer it got to 4pm the more anxious I got, waiting for his call, waiting to hear he was on his walk.  Finally the phone rang close to 4:30pm.  “Hi mama!” Matt said.  “Hi Matt, are you on your walk?” I asked.  “Uh, no. I already been.”  Matt had gone on his walk – and forgot to call me first.  We talked about his path,where he decided to go and it turned out to be the same as usual – even turning  left from the apartment as he had done many times before.  He had decided to stick to old routines. He had even gone to the weight room, but someone was there and he left almost immediately.  Matt is wary of strangers (thank God!). So, his first independent walk went well. He will walk almost every day and at sometime in the future, perhaps next week, perhaps next month, Matt will choose a new path and venture out.  He’ll slow down and take his time as he investigates the world without a hovering parent.  Matt has shopped in stores alone, he has stayed at home alone and now he ventures out alone.  Someday we will move forward again and Matt will take a bus to a destination of his choosing.  That used to feel a million miles away.  Now it feels as if it could happen tomorrow.

Best Friends Forever (BFF).  Who is your BFF?  Let’s define it first.  As I see it, a BFF is someone who knows you – very well.  This person loves you un-conditionally. They will be there by your side in good times and bad.  They are very special people because they can listen to you without forming judgments.  A BFF stands by you as your equal.  If you look around you will notice that most individuals have a friend or two – and if you look on Facebook, well, friends are listed in the hundreds (sometimes thousands!)  My autistic son, Matt, desires friends.  He wants to have someone he can hang out with, laugh with, shop with, and this desire is a natural one.  The majority of people need other people in their lives to feel whole.  Matt simply wants to feel whole. After high school Matt’s friends drifted away, as friends do.  There really isn’t a great place to meet new people, except maybe college, and we’re working on getting him to take more classes.  He needs the social impact of continued education.  But how do I help him until then? We live week to week on our income – no activities that require money can be considered.  We live in the country – we can’t even see our neighbors.  Can you see the dilemma? To make things more complicated, I am a natural hermit.  I like the seclusion of my life.  That makes me one of the few who spend as little time as possible with other people outside my own family. I really enjoy hanging out with Matt.  We shop, laugh, play Wii sports, talk about the future, discuss world events and the weather.  I teach him new things – and he teaches me.  We make a good team.  About a year ago I started telling Matt he was my best friend.  His joy in this knowledge was immense – Matt had someone who considered him their best friend!  At the time, Matt was traveling with Tom (my husband).  Tom took several contracts over the past year and Alabama and North Carolina were close enough to home (Virginia) that Matt could come home if he needed to. While he was away Tom was his BFF.  I would say, “Matt, you’re my best friend!” Matt loved hearing it.  Unfortunately, he also felt conflicted.  I could tell he had a problem.  “What’s wrong?” I inquired.  Matt would say, “Daddy is my best friend”. “That’s great!” I would assure him, “a person can have more than one best friend”.  After that, Matt enjoyed hearing me say it.  His answer was always an affirmation that he liked it – a simple “Yes!” and a hug. He’s been home since January – Tom landed a job closer to home. We are all together again and life is getting better. I had major surgery in January and then went back to work part-time.  The upside of this is that Matt and I have been spending more and more time together. He took care of me and helped get around – he treated me like I was fragile.  I learned just how deeply Matt cared about me.  I get stronger everyday.  Presently, I feel like a million bucks.  Life is getting back to normal.  In addition to our usual list of activities I have been taking Matt out for driving lessons.  A new challenge requires my focus to be a bit more concentrated on what Matt needs. My focus on him and his focus on me has allowed a chance to re-connect on an even deeper level. In addition, I realized just how much I missed him all those weeks he was away.  Matt is the light of my life.  When he’s away the world seems a bit darker, as if the color of life has drained away. Having him home I feel whole again. Feeling whole is what we all want. Last night, on the eve of Mother’s Day, as I was headed for bed I stopped in Matt’s room to tell him good-night.  “I love you, Matt.  You’re my best friend.”  I said. I gave him a big hug and a kiss. “You’remy best friend too” he replied and returned the hug. “Really?” I asked. I was honestly caught off guard. “Yes.” He said simply and gave me an even tighter hug. A BFF is a person that makes one feel whole. My son and I are BFFs – what more could a mother want? My heart is full.

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