From Saturday, April 24, 2010 Here I am in the den trying to think of something to write about that I haven’t already covered. I have writer’s block – such torture. As I sit and ponder I hear the sounds of hardy laughter emanating from Matt’s room. Matt is watching Bugs Bunny – the new DVD he just bought. The DVD is a collection of the classics and Matt grew up on the classics. Bugs Bunny and all his friends, the familiar theme songs and character voices – what a blast from the past. Matt has been steadily laughing now for 5 minutes straight. I take a moment to listen – ah, Road Runner and Wiley Coyote. No wonder he’s laughing so hard. Cartoons have always been something I enjoy and I started my kids out early on the antics of such characters as Tom and Jerry, Scooby-do, The Flintstones (I know every episode by heart), and of course, Bugs Bunny. Matt has found cartoons – especially these silly ones from the past – to be the most enjoyable too. He has openly laughed while watching since he was just a toddler. There were times in the car that Matt would burst out laughing and we would all look at each other quizzically, “What’s so funny?” we wondered. I had to wait until he could speak to find out the answer to that question – Road Runner and Wiley Coyote, Bugs Bunny or some other cartoon. Yep, all those times he would burst out laughing, Matt had actually been replaying cartoons. Matt was watching these reruns in his mind and laughing at all the right moments. If you asked him “What’s so funny?” he could describe the entire scene to you, complete with any road-signs poor Road Runner had to read, or Bugs Bunny or Elmer Fudd held in their hands. Holidays and Birthdays always brought VCR tapes of classic cartoons from the grandparents. Matt literally wore out each tape (and 2 VCRs). Each replay brought hardy laughter and memorized speech – which was fine with me. I know, I know . . . I should have modified his behavior – according to all those experts who have no autistic child of their own. According to them, I was supposed to try and curb his desire for routines and “strange” behaviors. But I must confess, I liked it (gasp!). I loved hearing the joy. I loved seeing the smile. Why in the world would I break his heart over something as trivial as watching cartoons? So I let Matt enjoy his cartoons and his movies over and over (and over and over) until the tape or the VCR just couldn’t play anymore. And Matt stayed happy and openly displayed this most precious of emotions. Did it ever do any real harm? Well, I guess if you counted how many people thought they would lose their mind after hearing the same cartoon 8-10 times in a row – but heck, they’re family, so they just accepted it and suffered. I have another confession; I still love cartoons. I haven’t watched any of the newer ones. They are not the same. The plots are too serious or they are just not goofy enough to suit my sense of humor. Matt understands – he likes goofy too. So as I sit in the den and listen to his laughter – yep, still going on – I think about how much joy this child carries with him everyday. He laughs so readily, he smiles and jokes so easily. Hearing the sounds of joy fill my house I am glad that I never took away his desire to replay tapes. I survived, my family survived and Matt grew up with laughter and joy. In the end, the only thing that really matters is that my son is happy. From all indications, he is enjoying his new DVD immensely. I sit and ponder on the teaching value of such silly animations. The facial expressions are really obvious for each character – you definitely know what they are thinking. A Daffey Duck with a face full of buck-shot from Elmer clearly displays disgust, loathing, and shock. A Road Runner looking at a bowl of seed tainted with explosives clearly shows intelligence and a “yeah, right . . . “ Matt laughs at these expressions because he can read them clearly. He could watch the facial expressions of animated characters long before he could stand to look at a human face. He was safe with the animations – and he learned facial expressions relate to human emotions. He also picked up a wonderful sense of humor and an easy laugh – 2 very endearing traits. So, did they teach Matt anything? Of course! Every exposure to cartoons taught something. Children learn through interacting with their environment. What type of environment we choose to expose them to is up to us. An autistic child learns the same way in this regard – their environment is everything. Watching the classics (cartoons)? Well, they're really just another minor player in the entire scheme of things, but vastly important to Matt experiencing joy on command. Bad day? Turn-on the cartoons and watch the bad times slip away. As I finish writing I hear the whistling sound of a bomb dropping on Wiley Coyote and a very hardy laugh burst from Matt. Yep, cartoons rule! To this day whenever I hear a cartoon on I know thw laughs are not far behind - it remains music to my ears.

Autism awareness is everything.  The difference between being unaware and having awareness can be illustrated in looking at my son’s high school experiences and the journey he took toward social interaction during those years. In reflecting on these emotionally charged years I realized something else…. there is enormous harm inherent in a school system that does not provide autism awareness to its general student population. I taught at the high school level years ago, during the same time that my son Matt was a student in a different high school.   I would bring Matt to some of my school events and this simple act of inclusion paid off in his ability to interact socially with his peers.  We attended events at his school also – but with quite a different outcome. One of the events was an academic competition between area schools. I was one of the science judges. Matt would sit in the audience with me until the science portion was announced, at which time I would take my place at the judges table leaving Matt to stay in his seat and watch, listen, and draw. Matt always brought pencil and paper – it was one of those behaviors that calmed him – sort of like Linus and his blanket (Charlie Brown’s best friend). For the first few competitions he would draw until the match began, at which time he would then sit up straight and listen to each question and answer. After a few competitions I noticed just how much knowledge this child kept under wraps.  Sometimes his answers were wrong, but most times he was right.  He answered each question in a whisper as he competed by himself.  Matt’s forte was (and still is) History and Geography.  During these questions I would be sitting with him and he would quietly answer each question as if each were common knowledge. He would give a long slow sigh if the student got it wrong, as if he just couldn’t  fathom anyone not knowing such simple historical events or locations. Realizing he could be an asset to his school’s academic team we had Matt join - only to be left out of the group practices.  They would never allow him to compete having already decided that Matt couldn’t do it.  His autism affects his speech, which is hesitant.  Under stress it is even more so, and he will struggle to initiate that very first word.  Once he gets the first word out the rest is not a problem.  Practice was everything.  By assuming he couldn’t do it they guaranteed he couldn’t do it.  Matt’s stress was too much.  He wasn’t fitting in and he knew it.  We decided he should just drop out. Sitting in the audience with me and with no pressure to respond Matt easily answered most of the questions at every match, year after year. His school missed out on a very knowledgeable competitor – Matt missed out on social interaction with a team of his peers.  Each time his school was up against my school Matt rooted for mine – not his.  Do you blame him?  At the matches for my school Matt was in seventh heaven.  You see, many of my students were competitors and they knew about Matt.  I had told them about autism, what it means, what behaviors are evident and who Matt really was and they eagerly asked questions and sought information.  Matt’sintroduction to real peer social interaction actually was initiated by my students at the academic competitions.  I had explained to my students during class that the first introduction would seem a bit strange as Matt would look downward and most likely not speak to them, but if they came over again he would actually greet them by name and look right at them. Several of the students tried it out – stopping by for the introduction before the competition and returning after the competition to say good-bye. They were amazed at the difference between the 2 meetings. Matt would smile and looking right at them, wave and say good-bye as if they were long-time friends. Matt got to know my students after weeks of academic competition, so it came as no surprise that whenever I had another school event to go to (plays, sports, and dances), Matt was eager to come along. He was approached at football games, baseball games, and plays by my students every single year and that made a world of difference.  He felt as if he belonged there and it made him feel good about himself. He went out for sports at his school only to be left sitting on the bench, never once given the chance to prove himself to be just another kid.  At my school, the wrestling coach wanted him to be their official videographer.  At his school he was never accepted.  At my school they loved him.  The secretaries hung his drawings on their walls, the students asked him to come to their plays and when they saw him out in public places, would always stop to chat.  Student often asked to see the latest in his art portfolio which he carried with him everywhere.  The differences between the students and adults at his school and those from my school were blatantly obvious.  During school hours he had a wonderful paraprofessional and he loved his school, but it was at mine that he felt free to be who he was. The most memorable event came in Matt’s senior year – his prom.  He couldn’t have done that type of social event if it had not been for the autism awareness at my school. At my high school, prom was a really big deal, with decoration of the gym consuming the entire spring semester. Prom was always elaborately creative with several departments lending their expertise; art, drafting, building trades, home economics, and even P.E. (for the labor). The gym would be transformed over a period of months into magical gardens with waterfalls (real water!), sculpture lined pathways, and cozy dining areas with drink fountains and fancy appetizers. As one of the senior sponsors I was a chaperone – and I brought Matt. The first time I took him with me to Prom Matt was only 12 years old. He looked around, took pictures, ate some cookies and drank some punch. He was introduced to new people and watched the students dance, but he stayed on the sidelines and walked the perimeter. The next year he got more into it and even danced with the young daughter of one of my teacher-friends. The year after that he even danced with a few of my students. The young ladies would come over and engage him in a short conversation and then ask him to dance. Shy at first, they would gently take his hand and walk him to the dance floor. They understood what autism meant and what Matt had to deal with in regards to sensory stimulation and troubles with speech.  They were gentle and soft-spoken. It didn’t take long for Matt to feel comfortable in such a large gathering of people his own age. They were friendly … and they were safe. The years went by until finally the time arrived for Matt to attend his own Senior Prom. When asked if he wanted to go he declined at first, but when he learned his 2 friends were going - and they wanted Matt to be there - he soon changed his mind. Getting him fitted for a tux, buying flowers and choosing a place to eat were all minor decisions. The major decision was getting a date.  Matt doesn’t date. The social mingling of a boy-friend and girl-friend couple are beyond his comfort zone. My husband and I talked it over and decided if Matt were to have any fun at his Prom he would have to go with someone he knew well, someone he could have a great time with, someone he could be himself with, someone who knew him . . .like his step-sister, Sarah.  We called Sarah, who was at college, and asked if she would be interested in taking Matt to Prom. The request was met with a resounding “Yes!”  She would come home from college on that weekend and escort Matt to his Senior Prom! The big day arrived. Matt got dressed in his tux and at first pulled at the collar and complained about the tie, but after hearing all the great compliments on his attire, decided it wasn’t so bad. He knew he needed to wear the tux – he had seen the young men at my school each year all dressed in one.  Sarah dressed in a pale lavender gown with her hair French-braided - she looked beautiful!  Matt gave Sarah her wristcorsage.  Sarah gave Matt his boutonniere. We took pictures of their smiling faces -  a very handsome pair. They went to dinner with Matt’s friends and sat with them at the Prom. There was laughing, conversation, and dancing. For days afterward people asked me, “Who was the beautiful young lady that went with Matt to Prom?”  Part of me wanted it to remain a mystery, but I was too proud to keep it a secret. Going to Prom was a milestone. I never would have guessed that Matt would’ve been willing to subject himself to the noise and the lights.  He was comfortable in that large group because he had practiced going to similar events for years.  He truly enjoyed his prom because he knew how to go to prom.  Matt was a senior and going to prom solidified his feelings of pride. He realized he had achieved what each of his siblings had achieved – and he was going to graduate! The weeks after prom flew by and Matt stayed on cloud-9 the entire time. Would Matt have gone to prom if I hadn’t subjected him to all my high school events?  I don’t think so.  Matt found acceptance at my school that he didn’t have at his own.  Classroom acceptance is limited as the other students knew he was autistic and that he was “special-ed”.  They didn’t realize he was a young adolescent just like them with feelings and intelligence. After school programs are ways for students to interact socially, but he couldn’t do that at his own school.  The students there were unaware and that alone can lead to bullying or misconceptions about ability.  The 2 friends Matt had were children he had grown up with - their mothers and I are friends.  Matt’s friends were aware. I honestly feel that had he not had the many practice sessions at my school with my autism-aware students he would not have been comfortable enough to attend his own prom. Events at his own school were too stressful for him.  Coaches considered him a liability.  Other student’s tried to make fun of him.  It was different at my school.  My students learned about autism and learned about the ways in which to interact with my son.  They were eager to meet him and enjoyed bringing him into their fold.  Their openness to learn, to interact and to genuinely discover who Matt really was made all the difference. The difference on how autism was viewed was determined by the degree of autism awareness students had at each school.  What is needed in every school is an autism awareness program that reaches across the curriculum so that students can have the opportunity to learn and understand. Understanding autism – isn’t that really the main obstacle parents and their children face?  It’s time to bring autism awareness into the schools.

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?

Doesn’t a nice dip in the hot tub sound great?  My back is stiff and aching and I find the hot water and strong jets are just what I need when the weather turns cool.  I ask Matt if he wants to get in with Tom and me.  Sometimes the answer is “yes”, but more often than not the answer is “no”.  Matt loves water – always has.  So why would he not want to get in the hot tub?  Very simply, Matt is very sensitive to environmental stimuli.  Included in this category are bright lights, loud sounds, strong odors, certain textures,certain tastes, and drastic temperature changes.  At one point, when he was very young, all of these stimuli played a major role in his everyday life.  Over the years he became more interactive with his environment and slowly some environmental factors became acceptable.  This was an area of learning that Matt decided to tackle in his own time with only gentle encouragement from the sidelines.  The hot tub has been a real challenge for him. We have had our hot tub for many, many years.  He was always asked to join us and we got use to the same reply of  “no thanks” over the years.  Then one day, much to our surprise, Matt replied “yes”.  He hunted for his swimsuit and grabbed a towel.  As we walked the deck toward the hot tub I noticed Matt’s gait. He was marching – a man on a mission. I could see the determination on his face.  He really wanted to tackle this obstacle.  Tom took the cover off and as he did we could see the trapped steam roll upward.  Matt’s face changed.  He looked worried.  I got in knowing he was watching my every move – watching for signs of burning and pain. “Oh, this feels good” as stated as I sunk into the water.  “It’s OK, Matt” I coaxed, “Just take itslow”. Matt stepped a foot in and simultaneously emitted a hiss.  He sat on the side struggling with the idea of submitting another foot to the heat.  He had gotten this far before in previous attempts.  In each of those attempts the heat was too much and he had to call it quits, retreating to house.  I waited. If Matt were to back out it would show on his face.  The look of failure in his eyes was always heartbreaking.  This time I could see his face was a mixture of emotion. Yes, I could see fear, but I also saw determination.  Matt brought his other foot over the side and into the water.  Another hiss as he breathed in.  Matt had just gone further than any previous attempt. “If you wait a few seconds you’ll get used to the temperature and then it will feel good.” I said as I moved closer to him.  He waited. Tom coached Matt from behind, I coached Matt from the front, but it was Matt who made the decision to slide in a bit more.  He managed to get both thighs in the water. Would he sit?  Would he declare he was done?  Tom and I watched on, both of us holding our breath.  Matt slowly slid into the water and sat on the seat. “It’s hot” Matt stated matter-of-fact. Tom got in behind him, making the same hissing sounds and facial expressions Matt had just performed.  Tom wasn’t trying to mimic Matt – he actually felt the same body-shock as Matt. It’s interesting to note that Matt glanced at Tom for just a second.  Matt’s focus was intently on his own body and maintaining his position in the water.  I could see he was still forcing himself to stay beneath the surface. Matt was in.  We were in.  We all sat for a moment and then asked Matt if he would like us to turn on the water jets.  “Yes!” he replied as he nodded his head.  Matt was beginning to feel confident.  His body was getting use to the water.  The expression on his face was more relaxed.  We turned on the jets. Matt first experimented with the feel of the current on his hands, and then positioned his body so the water would hit his back.  He was actually beginning to enjoy the experience. We talked a while – about little things mostly;  the trees, the clouds, the cat coming to join us (walking the perimeter on the rim of the tub).  When we got out Matt hurriedly grabbed his towel and headed for the house.  His walk said it all – he was now a Master Hot-tubber! It’s such a slow process to overcome the challenges of autism.  Each simple move forward isn’t just a happy day for parents; it’s a joyous day for the autistic individual too.  Don’t think for one moment that an autistic person doesn’t know when they have beaten one of the challenges.  I’m betting Matt keeps a mental list of simple challenges to be met head on.  I can see it on his face, in his body language, and hear it in his speech.  A simple thing like getting into a hot tub is not a simple thing to the autistic individual with hypersensitivity to environmental stimuli.  Matt had to force himself to feel the pain of hot water. He had to resist the overwhelming urge to pull out.  He subjected himself to this environment because not getting in made him different.  Matt hates being looked upon as different.  So he took up the challenge, faced it head on, and walked away a champion. How can anyone not admire the fortitude it takes to do what he does almost every day of his life?

When do you tell your autistic child they are autistic?  When do you explain to them what autism is?  How do you know when the time is right?  I'm sure these are questions all parents face as they move through the years. The time for one may not be the time for another.  So, what’s the answer? Quite simply, the right time will eventually present itself. Matt was still very young when I first used the word autism in his presence.  It finally dawned on me that autism was not something he or I should be ashamed of.  When Matt was only 8 years old I got my first opportunity to tell him he was autistic.  I noticed that he was more aware that other people were different from him.  He could tell he was not like his brothers or sister, nor like the other kids at school. One day he asked why he had an aide. He had noticed that his paraprofessional, who sat with him during class,was there with him every day.  Although she would help other children also, she was obviously there primarily for him.  Why did the other children get to sit by themselves?  Matt wanted a simple explanation for this perceived anomaly. I sat in silence for a moment trying to decide how to tell him.  This was my first fork in the road.  Do I explain to him what autism is?  Do I water it down and give him a simple answer? I had been expecting him to ask for some time and thought I was prepared, but I wasn’t.  My heart raced.  Clearly I was nervous.  “Matt, you have autism.” I began. “Autism?” he asked, using that quizzical inflection of his voice that I knew so well. “It means you need some extra help.” How lame. I skirted around an in-depth explanation, but I felt Matt didn’t seem to need more than that.  I had taken the low road - the easy way out. I would find out later how wrong I was. Time went on. I started to notice more and more that when ever Matt overheard someone say the word “autism” in reference to him, his face scrunched up as if he had just had a whiff of something bad.  The word upset him. How many times had he heard this word at school? How often had he wondered why he was different? Clearly the word autism made him feel like he was some how less. I finally realized that by skirting around the question with my previous explanation I had most likely made him feel worse. Matt was between 10 and 11 years old when I finally talked to him about autism - really talked.  He had been struggling with the concept of being different and he sure didn’t want to be any less than anyone else.  Speech therapy and aides made him stand out at school and his awareness of self at that age was really kicking in.  The “extra help” explanation just didn’t cut it anymore.  One day as we were driving home from school, Matt was talking aloud to himself – a very common autistic behavior - and I heard him say in a disgusted voice, “I don’t like autism”. I calmly asked, “Do you know what that word means?”  “No!” He was quick to reply, “What’s autism?”  We had just arrived at the next fork in the road; do I explain autism this time, really explain it, or do I give him the watered down version again?  I knew Matt was smart, that he could probably handle a real explanation, but part of me still thought of him as too young to have the whole mess dumped in his lap. Since Matt had actually asked specifically about autism, I decided that  meant he was ready for some straight answers. I decided to take the high road. “Autism means that when you were young your brain was injured.” I said, patting him on the head. Matt had taken biology - he knew where his brain was.  His face scrunched up – a sign that he was thinking about what I had just said and didn’t like it – not one bit!  “My brain was injured!?”  He stated in a voice filled with shock and yet very matter-of-fact.  I knew he was really trying to understand.  I could tell he needed time to mull things over and we sat in silence for the next few minutes until we arrived home. Matt got out of the car and headed straight to his room.  I thought about our conversation. Had I really just told my youngest son that his brain was injured?  I berated myself for having said it, thinking of how awful Matt must feel.  I gathered my courage and headed for his bedroom. Matt was watching a video, drawing cartoon characters, and talking to himself.  I sat down on his bed and asked him to sit with me. I took a deep breath, gave Matt a hug and started my second attempt at explaining autism.  “Matt, you know you are autistic, right?", I asked.  “I don’t like autism”, he quickly replied.  “Autism is not a bad thing, Matt.”  Did I really mean that?  “Remember when I told you that when you were little you hurt your brain?” I asked. “Yes”, he replied, with a hint of sadness in his voice.  “Did you know that the human brain is really cool?” I asked. “Huh?” He was intrigued. “Yep, the brain is very cool.  When one area of the brain gets hurt another area of the brain takes over.  Sometimes it takes a while, but the brain tries very hard to fix itself”.  Matt looked at me for a split second - a quick glance at my face, trying to decide if I was telling him the truth.  “Some things are hard to learn because the brain is trying to think of a new way to do it, but the brain does find a way to learn, Matt.” I had just captured Matt’s full attention.  "How did I hurt my brain?" he asked. "Well, we just don't know for sure.  Not even your doctor knows how."  He could see on my face this was true.  "But we have been working very hard to fix the problem, and that's why you have speech and that's why you have an aide at school." Evidently, I hit upon what Matt really wanted - what he NEEDED to know – that he was different because of an injury - an accident - not something he did wrong.  He needed to know he had a reason to be different, that there was hope, that his brain could still learn the things he wanted to learn, and that he would be O.K.  I continued on for a good long while, telling him about all the new things he had learned since he was 2 years old.  I gave him examples of autistic behaviors and emphasized how he had overcome so many. Matt listened intently.  Some of his behaviors from when he was young he couldn’t remember, like hand-flapping, spinning, and sleeping on the floor of my bedroom.  I emphasized over and over how proud I was - how proud everyone was - of his specific accomplishments.  As he listened, I imagined him marking each of those behaviors off a mental list. I could tell he was absorbing everything I was saying. I also told him that autism had a special feature – his artistic gift.  I pointed to his drawings and remarked on his accuracy and his use of perspective. I compared his art to that of the other children his age and made sure he knew – absolutely knew – that his art was uniquely special. It was a good talk.  I felt better about how I handled the topic and more importantly, Matt felt better about himself.  From that point on when ever Matt came upon something difficult to learn he could realize that his brain was working hard to find another way to understand.  Matt now knew there was a reason for the differences he saw when he compared himself to others. He made it his mission to try to do what others did, and this pushed him to drop more and more autistic behaviors. The years that followed were filled with goals Matt made for himself. He had an image of himself he wanted to attain.  Matt worked very hard to be Matt. Over the years we have pointed out his special gifts and discussed his future in terms of challenges and goals.  Matt continues to meet those challenges head-on, without showing fear, and with a determination of a man on a mission.  His progress toward his goal of independence began that day so long ago, sitting on his bed and discussing autism.  Of course, there have been tearful days too, days when a very frustrated Matt has cried, “I hate my brain!”. But there have been even more days of hearing a very proud and triumphant “YES!” when he is sucessful and accomplishes a goal. We don’t dwell on the negative aspects of autism anymore.  Instead, we use the term more as a reaffirmation of Matt’s wonderfully unique qualities.  Matt likes who he is.  He doesn’t see himself as handicapped and neither do we – the ever expanding group of people who know and love him. Autism - the word just isn’t as foreboding as it used to be.  It has evolved to become more associated with the term unique. I know every parent at some point has to explain to their autistic child what autism is. Personally, I’m thankful that particular hurdle has been crossed. I can still remember the terrible anxiety I felt leading up to our talk. For those of you who have yet to explain autism, my only advice is to be kind to yourself.  It’s a hard topic and you will get through it. Realize that it may take a few attempts. Explain autism in your own way, one that is comfortable for both you and your child. Stress that they’re just different, not less. And keep in mind that the human brain is a miraculous organ.  It will try to find a way to make new connections to replace those that were lost. What is autism?  Autism is when the mind attempts to find a different and unique way to learn and understand this world. Given the right tools and a loving environment, it will.

We were on our way to town and Matt had only been up and moving for about an hour.  "Did you brush your teeth"?  I asked.   "Um, yes!" he replied as he headed down the hall.  "Did you put on deodorant?" I asked. "Um . .." he turned on a dime and headed straight for his bathroom.  Sometimes Matt needs a little reminder when it comes to personal hygiene.  A little reminder is nothing if you could have seen the early years. Teaching an autistic child to brush their teeth, comb their hair, take a shower, put on deodorant, and for males, shave, are all an adventure in persuasion techniques. Let's start with brushing teeth. Parents brush a child's teeth for them until they can take the reins and do it themselves.  An autistic child has obstacles to overcome that other children do not. The taste, the feel of the bristles, the gag reflex.  We were lucky in that the taste wasn't too bad.  Matt started trying different candies including candy canes at Christmas and that same mint flavor was in toothpaste. Compare that flavor to brands with backing soda and soon you realize that baking soda toothpaste was a waste of time and money. As for bristles, we started with a very soft toothbrush and had him explore the feel on his teeth at his own speed - a slow, timid sweep across the teeth, then another, and another. The back teeth caused a gag reflex and he had difficulty overcoming this - and until he did those back teeth didn't get much of a cleaning.  I worried myself sick thinking about all the cavities he would have because his teeth were not getting the proper brushing.  I knew it was time to see a dentist. The first dentist trip was a complete disaster. Matt was 4 years old and absolutely refused to sit in the chair.  I had to hold him ... tight.  Once we were in the chair he refused to open his mouth. The dentist never saw Matt's teeth that day.  I needed to find a special children's dentist - a specialist with struggling, refusing kids that didn't open their mouths.  I called for an appointment and almost in the same breath explained that Matt was autistic.  At that time most people had never heard of autism and I simply followed my statement with and short explanation of what autism was (as usual). The weeks prior to the visit we practiced opening his mouth on command. "Can I see those pretty teeth?" I asked. After several minutes he would smile and I would tickle him.  "Can I see those pretty back teeth?" I ventured a little further.  Matt would open his mouth to show me - and I tickled him again.  The game was simple enough - but would it work at the dentist's office? It sounds like a nice smooth transition - but it took more perseverance than you think. It took weeks of practice just to get him to open his mouth and let me see. Sometimes tickling wasn't enough.  Sometimes it took bribes of cookies and candy and toys. It required a great deal of patience.  Matt's dental exam with a pediatric dentist lasted all of 5 minutes.  The dentist got a quick look, but that was all. I continued to worry about his teeth and finally decided I would take Matt to my dentist. I took both my sons; Christopher and Matt.  The first visit was my appointment.  Matt met the dentist and explored the waiting room and watch as the dentist looked at my teeth. Then I made the boys' appointments coinciding with my next visit.  Christopher and Matt were both a bit anxious come appointment day.  So was I. Matt, hands flapping, watched as Christopher headed right in when his name was called.  If Christopher had flinched, even a little, then Matt would have fought us. Fortunately, Christopher did exactly what he was asked to do, showing no fear. Matt willingly came back with me and watched as they looked at my teeth.  When it was Matt's turn he climbed into the chair on his own. The chair hummed as it lifted. I caught his eyes and smiled and pointed at my teeth.  Matt understood immediately and smiled.  The dentist asked him to open up and I caught his gaze again and open my mouth real wide.  Matt again understood and responded by opening his mouth real wide. The dentist lightly touched each tooth. We had practiced this at home.  Matt expected it and thus allowed the examination to continue.  Afterward, I took the boys to McDonald's. Sounds a bit strange, taking them to eat after having the dentist clean their teeth, but a bribe is a bribe and Matt had been promised a treat if he allowed the dentist to look.  Besides, breaking routine at this crucial point would have been disastrous. The next big step was changing toothbrushes. Matt never did like using a manual toothbrush.  His brushing technique needed changing and I couldn't get him to brush thoroughly with a manual toothbrush. Then the automatic toothbrushes came on the market and that changed how well Matt brushed. The battery-operated spin brush was a blessing. Matt didn't mind brushing his teeth if he could use the automatic spin brush.  Matt  finally began brushing the back teeth because the spin brush did not cause a gag reflex. Matt didn't have a cavity until 2009, at the age of 23. I dreaded the day he would need a cavity filled, but I didn't need to.  By then, Matt was well known at the dentist office, knew the routine and liked his dentist. I explained what would happen and gave him every single detail of the procedure. I told him his face would feel a bit weird but that it would wear off. On the day of the appointment I was the one that was anxious. Matt went in when his name was called. I watched him march through the door determined.  A few minutes later I was called for my own scheduled cleaning. I sat in the chair straining to hear anything that resembled a fearful cry, pain, anger . . . but no sound ever erupted.  After my cleaning the dentist walked in to check my teeth. "Matt had 2 cavities filled and he's all done", he said matter of fact. I sat stunned. Really? Already? "He needs to focus on his gums more . . ." the dentist went on. But I didn't hear him finish.  My mind was still on the fact that Matt allowed a needle in his mouth, allowed the sounds of drilling and the feel of packing a tooth with filling.  I was awe struck.  Could it really have gone that well? I met Matt in the waiting room.  He didn't look happy, but he didn't appear fearful or mad either.  Actually, he looked fascinated by the numbness of his face and that was all. I schedule one more appointment for him to get a third tooth filled. On our way to the car I explained to Matt that we would have to come back in a few weeks to do it again.  "Yes" he replied. There was no fear in his voice. He never even flinched. Matt is now 26 years old. He brushes his teeth and sees his dentist twice a year.? It's just another routine now.  It wasn't always this way - it used to be stressful and worrisome. Now, taking care of his teeth only requires a simple reminder. "Matt, did you brush your teeth?"

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

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

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.