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  • The Right Doctor

    I remember when Matt was little how important it was to find the right doctor. We had found a good one - a family practitioner who listened to me about my autistic son back in a time when no one had even heard of that diagnosis. I remember helping him understand my son a bit better: textures, light, sounds, etc., were difficult for Matt to endure, he didn’t respond to pain, he didn’t speak. All these things were as unfamiliar in their description as the diagnosis to his doctor. The physician learned from me what it meant to have Autism and be moderate / severe on the spectrum. Those were scary times and illness was a wait and decipher game with real-life consequences. “Doctor, he’s not playing as much lately and sits still too much” was a symptom of something wrong and a call to action (and later found to be double pneumonia). A lot has changed since then. Different insurance forced us to abandon a good doctor and pick from a list of unknowns. Who do we pick? Of course, Matt speaks now – not very fluently for the most part and has difficulty finding the right words, but he communicates. He seems to be the healthiest guy on the planet as he never complains about anything. He doesn’t take medications of any type. And when I suspect there’s a problem I go back to that super-sleuth mode and if I suspect a problem then Matt needs to see the doctor. Now most, if not all, doctors have had some type of training in autism, but our recent experience with bringing him in to be checked by a doctor covering for his newly picked-from-the-list-doctor showed the information is skewed – and they treated him like a leper. That was detailed in a Transition Updates story, “Doctor Visit to Oz”. What transpired forced me to reconsider the entire practice at that location and I went with recommendations for a new doctor, further away. First, I became a patient. I got know her (Dr. Amy) a bit and after feeling secure in her friendliness and willingness to be a “listening” doctor, asked her if she would be willing to see my son. She was enthusiastic at the prospect – an excellent sign! I then gave her a signed copy of my book, “Autism and the World According to Matt”, and made his appointment. She has a busy practice and we had to wait several months for the initial meet-n-greet. Yesterday was that day. Matt was so sleepy when I picked him up. It was only noon and he usually sleeps until 6pm. He was up and moving and knew we were heading to the doctor’s but the combination of not getting enough sleep and meeting someone new was showing on his face. He was not thrilled about either. I threw in a trip to McDonald’s after the appointment and he perked up. Gotta love McDonald’s for still having that power to brighten his day. As we drove over I went over the new visit with his new doctor – again. I reminded him of why we were going, and what was going to happen. I reminded him of his last doctor visit and his face immediately scrunched up as if he smelled something dead and rotten. “Not to worry, Matt” I replied, “I fired them!” Matt’s face lit up with a thousand points of light and he looked at me as if I were the most awesome mom on the planet! (Which of course, made my day spectacular, thank you!) I then went over with him the usual things that happen at the doctor’s office – BP, temperature, weight, height, and reminded him there would be no needles today. He was building confidence. I could see there was no real fear – a bit of apprehension (can you blame him after that last visit?), but he was doing well. Finally we arrived and got checked in. Matt scanned a magazine and had just put it down when they called his name. Back we went, behind the mysterious doors that separate patient from medical staff. Matt walked in first. I was in “fly on the wall” mode. I saw myself as his interpreter only – and only if absolutely needed. This was all about him, all about how they would treat him. Would they speak to me or to him? Would they treat him like the man he is or the mute, non-thinking, non-human like they did at his last visit? The nurse was pleasant but quiet, doing her routine of weight, height, and blood pressure. She didn’t alter her routine in either direction – not over the top sweet or leper-handler…. Just a nurse doing nursey things. She put the blood-pressure cuff on and the automatic pump kicked in. She went to zero the scale a few feet away. Matt’s face revealed the intensity of the pressure he felt on his arm as the cuff inflated and I talked him through it, “It’ won’t go any higher, it’s starting to come down now, it’s almost over” and I noticed a light bulb went off for his nurse – her face said it all. She didn’t know Matt was autistic. As she listened to me talk with my son I could tell she was studying my voice and watching my son. She smiled at him more, talked a bit softer and not so hurriedly. She asked him if he knew how tall he was and Matt said “No”. So now it was time to measure. Gentle, slow, calm…. Yep, you are a quick study, dear nurse. “70 inches”. She stated. Matt looked at me as he stepped off the scale. “What’s up Matt?” I asked. “70 inches? I don’t know!” He said confused. “Oh, you are 5’10” tall” I said smiling. “Oh!” he replied and smiled back. We were escorted to the exam room. As soon as the door shut Matt walked to the exam table, hopped up and reclined. Guess he just needed to lie down a second….. Then there was a short knock on the door and in stepped his new doctor, Amy. She greeted me (as I was in the direct line of sight) and then saw Matt all stretched out on the table. Her hand immediately came forward as she introduced herself to my son, “Hi Matt. It’s nice to finally meet you!” Matt smiled – looked right at her face – and extended his hand. (Awwww…. My heart was moved seeing Matt hold her gaze like that. Geez… autism parents get a kick out of the tiniest of things, don’t we?) And so began a conversation between the doctor and her patient. I could tell she had read the book as she knew exactly what topics to hit to make him at ease. She didn’t look at me – she looked at my son. When she asked HIM about cooking Matt gave her his entire list of things he cooked for himself. She asked HIM about his hobbies and activities. She asked HIM about his life. And Matt replied, on his own, to each and every question. He talked about VT and photoshoots and walks. His voice was light and happy, and even though his words were difficult to produce and he stuttered greatly, he kept at it, never giving up. He was determined to be heard. When he stuttered his hands came into play, using hand gestures to convey his desire to communicate, to help him speak . . . . and the doctor LISTENED. She never finished not even one sentence for him. She waited as he struggled and found his voice and she smiled and conveyed a relaxed body language, never once rushing him to just finish talking. She was impressed with his successes, and she told him so – and Matt beamed. It was a conversation between a patient and his doctor… a real conversation. It was everything I could do to just watch – without jumping up and doing a happy dance. As you can see, we left yesterday feeling successful and happy. Matt was excited to know that he only had to go to see his doctor once a year – unless he got sick. He was happy with this new doctor – and claimed her as “HIS”. He felt comfortable and his emotions were wonderfully expressed in his walk, his body language and the lightness of his voice, each conveying volumes about his experience. Matt would be just fine with Dr. Amy . . . heck, more than just fine. It’s difficult being a parent of a handicapped child when people who need to interact with your child are rude or show apathy, or worse, treat them like they are contagious. It’s hard switching doctors because you are looked upon as someone hard to please, drug-seeking, or a hypochondriac. But it is all worth the effort when you finally get exactly what you are looking for, exactly the right match for your child. Matt can’t doctor-shop for himself … it’s up to me, the parent, to do that. If that means I get a reputation as difficult to please, then so be it. It is all worth it when you see a relationship start to bud that you know will blossom with time. I will not always be on this earth to do be Matt’s interpreter. It is a heavy weight on my shoulders knowing that my son can’t always communicate what he needs all by himself. I am praying that I remain on this earth until Matt can do it all on his own. Isn’t that what all parents really want? But I got a glimpse of the future yesterday . . . In time, my son will be able to tell his doctor everything she needs to know, all by himself. I know it. I KNOW it. Seems that the goals we set for our children are mostly long-term goals – and even longer-term for our autistic children. This was one of those goals and it has now finally been set upon the right road. I am thankful having discovered Dr. Amy, and I feel a weight is slowly lifting off my shoulders. More importantly though, an even bigger weight has lifted off Matt’s shoulders, because it is Matt who feels he has finally found the right doctor – one who sees him for exactly who he is.

  • Matt . . . Unique, talented, determined...and autistic

    One year ago my son, Matt, moved into his own apartment. It was a major event – in both our lives. Matt is moderately to severely autistic and mostly-non-verbal. He now lives on his own. It’s a big deal. Matt was diagnosed in 1988 at the age of two. He was examined by an entire team of doctors, professionals, and specialists. The whole examination took a full week and when they finally came to their conclusion of autism it came with a recommendation of institutionalization. Autism was thought to be a robot-like condition; unfeeling, unable to learn, and unable to live a fulfilling life. Autism was still a rare condition in the 1980s – only 1:10,000 were affected. Getting a diagnosis before the age of five was also quite rare, as most parents didn’t pick up on the changes, or convinced themselves it was just a phase. But I knew something had happened to my son . . . it seemed Matt was not the child he was months before. He was fearful of everything, especially loud sounds and people. He was twisting his hands all the time and he wouldn’t look at me, not even when I called his name. Matt was not institutionalized. He came home and not long after developed additional behaviors that seemed odd; flapping, spinning, lining up his toys, and looking out the corners of his eyes with quick flicks . . . and  I watched it all. Instinct told me autism was based in fear (years later, Temple Grandin also said this) and I wanted to alleviate his fears. Just as important as watching was learning about his condition – but this was the late 1980s and the Internet was not around. Books still referred to “refrigerator mothers” and without someone to guide me I soon learned that the best way to learn about autism was to become a student in the School of Matt, watching, listening and working the puzzle right in front of me. Matt could learn. I saw his curiosity and watched as he discovered the world around him. He was not a robot. He had feelings and thoughts. Since there were no experts in the field anywhere and even special education teachers had no experience with autism, I had to be the expert and I was (on Matt’s autism, not autism in general). I spent those initial years discussing Matt with preschool teachers, special education teachers and general education classroom teachers. I would pop in unexpectedly to observe – not the teachers, mind you, but my son. What was he doing? What was in his environment that he feared? What could we change to help him? Matt’s non-verbal communication was being fine-tuned each year and I was learning to both read his language, and even speak his language, in the way I presented myself to him. I gave these clues to teachers, whom after seeing that Matt could learn, were eager to help and became creative in their evaluations of learning. Matt was being read now by people in education as well as myself, and the discovery of his extensive knowledgebase just upped the stakes on what we could accomplish if we pushed just a little harder . . . Matt entered a general education classroom in the 3rd grade and continued to astonish. He was in Odyssey of the Mind, T-ball, went to a school dance, and even played baseball when the 6th grade challenged the 7th grade. He moved on to the high school. Again, I met with teachers. Again, they found creative ways to help him. He had a personal aide in the class who followed him from grade to grade – a person who knew him and his abilities from year to year and was an enormous help everyday as Matt continued to adapt to environmental stimuli, figure out human gestures and phrases and increase his vocabulary. Of course, increasing his vocabulary did not mean he wanted to speak – but when he did, he found the right words more often . . . his understanding of language was getting better. Somewhere in the mid- 1990s the Internet arrived. Unfortunately, it was still years before that actually meant anything because the Internet didn’t have much – on anything. Information on autism took a few more years after the official launching of the World Wide Web to the public. When articles on autism and parent blogs started to show up in searches my excitement at Matt’s progress turned to sadness. What did I learn on the Web that rocked my world? I learned that Matt was not getting better. His autism wasn’t getting milder simply because he could do so much, it only meant that he was progressively adapting. He was still moderate / severe, and still mostly non-verbal. Understanding that – the enormity of that - was the hardest lesson I learned from the School of Matt. All those changes in Matt during his school years from losing stereotypical behaviors to gaining better eye-contact, to expressing frustration, curiosity, anger, confusion, empathy, and joy, were not signs of Matt getting “better”. He was simply maturing. Matt was so much different than the other children I read about. Initially, that realization hurt – as if someone had sucked the hope out of my life – the hope for my son to someday, maybe have at least a semi-normal life. It seems ridiculous now, but I mourned the loss of an idea, one in which I was sure my son had progressed from moderate / severe to mild. What did I know of autism? I had only known one person with autism – my son. I had never, ever met another autistic child. I had no one to compare his progress to, except the maturing of his older brother . . . his neurotypical older brother. It took some doing to figure this all out on my own, that what I had observed in my son was simply the natural maturing of a child. He was still not able to speak naturally, he was still harboring fears and he still had great difficulty deciphering facial expressions, body language, spoken language and socialization. Then, in a light-bulb moment of clarity I realized that he didn’t need to “get better”, that his skills of adapting to his environment, society, and life in general, was a massive, huge, gargantuan accomplishment. I saw that my son was someone on the side of the spectrum where little hope resides - and he was kicking butt and taking names. Matt graduated in 2005 – with honors by the way – the same year Autism Speaks was formed and people started becoming more aware of what autism was. I started a new subject in the School of Matt - learning to see my child for who he was, see past the autism, and get a glimpse of the wonderful young man he was growing up to be. I thought I had always done that, but when I decided to look deeper I found so much more. He was so skilled in adapting, much more knowledgeable than even the teachers could discern. He was talented in art and photography. He learned quickly about things he wanted to know – and he wanted to learn how to be on his own. I realized it really didn’t matter that he was still moderately / severely autistic. It didn’t matter if he continued to be mostly non-verbal. I understood that while I worked with Matt and helped him jump the obstacles, that Matt was still Matt – autism didn’t take that away, it just masked his true self. I was determine not to miss the forest for the trees. Matt has a personality uniquely his own. He has deep thoughts and his own dreams to chase.He was quite capable of much more than anyone had ever given him credit for. Why did they not see it? Because he was autistic – and people have difficulty seeing beneath the autism. I did too, at first, and sometimes I still do and have to really work at looking deeper. It has all been well worth the journey. One of those dreams, his ultimate goal (a home of his own), took 9 years after high school to achieve. There were skills to be mastered and some were very difficult for him because they involved human interaction. But Matt is Matt.  He's almost 29 years old, and is quite capable of doing so much more and going further still. So this week, he will celebrate the completion of his first year living independently, and we – those that love him and support him - will celebrate with him. What accomplishments he achieves over the next year I can only imagine. We have our goals set for the upcoming year and our steps planned to reach those new goals, but when it comes right down to it, it’s the man that is my son who determines where he goes from here. Yes, he’s still autistic. Yes, he’s still mostly non-verbal. And yes, I believe he can do whatever he sets his mind to do. But not because he’s fighting autism. It’s because he’s Matt. Unique. Talented. Determined  . . . Matt.

  • The Light-bulb Look

    Matt spends only one night at my house per week now... what a huge change from a year ago.  The next day he gets up, plays a bit on guitar hero and then packs his bags and heads down the hall where he waits for me to hear him, knowing I will ask him if he wants to go home and in doing so will only need to reply in one word, "yes". Matt speaks to me this way.  He waiits for me to figure it all out, then ask and then he can reply.  Matt can not initiate speech. Earlier today we changed that ..... I think. I was sitting at the computer reading an article and I hear the sounds - very light footsteps in the hallway, accompanied by the sound of roller-wheels (the kind on Matt's overnight bag). I wait. I don't look up, and I don't speak. A few minutes later I hear the steps again -just a slight shuffle, and he stops again. Matt is waiting for me to turn around, read his intentions (his bag is packed and he's ready to go home), but again I don't turn.... I wait. A few minutes later I hear the next small shuffle.....then he stops again. "Matt? Are you trying to tell me you are ready to go?" I inquire, already knowing the answer. Matt comes out to the bar where I am sitting, walking with sure, determined footsteps, and stands in front of me. "Uh, yes." "Okay. But let's talk a minute first....." I go on and explain to him that what he was doing was allowing his autism to take control, making him wonder if he should speak, would he be bothering me, trying to be cautious, making him afraid to initiate speech with me, his momma. I told him that I knew in my heart that he was not afraid of his momma... that he knows how to speak to me and that he knows I will listen, it's okay to interrupt me, no matter what I am doing, if he needs to tell me something.  I said that when he felt unsure again, felt hesitant and wanting to wait, to try and remember that he need not ever fear conversation with me. . . . ever. I will always want to hear his voice and I will always stop to listen. His reaction to this little bit of motherly advice was priceless.  He lit up from head to toe - a light-bulb just went on - and a gigantic smile graced his beautiful face as he leaned in to hug me. Something clicked - something big. Was it that his tentative pace in the hall, his waiting for me, his old routine of awaiting to be invited to speak, was acknowledged as his autism?  Was it the realization that he could change that routine?  Was it that he knew he didn't need to fear initiating speech with me?  Has an old habit based in fear and routine been broken - or at least fractured? I want to think so. The look - a very obvious "oh!" kind of look that signals when something has been understood with absolute clarity, is one a teacher constantly looks for in her students - this was one of THOSE looks, and I recognized it immediately. I am so very anxious for next weekend now - to see if he just struts down the hall, straight over to me and comes right out and tells me he's ready to go.... what an awesome moment that will be. Of course, it might not be that simple.  Seems like nothing in autism ever is . . . but what if?  What if next week, or soon after, he does initiate speech for that one little thing - ready to go home to his place.  Matt is maturing in everything he does - and this maturing has sped up considerably since the move to his own apartment.  Even if it doesn't happen next week I know it will happen soon - I know because I saw it on his face. It's starting to dawn on Matt that he can be in more control, if he pushes just a bit more, just a little harder, past that fear of initiating speech, he can do this. He knows I'm in his corner cheering him on.  He knows I guide, I suggest and I push a bit here, a bit there, but never hard.  He is where he is because I do - and Matt knows this.  He trusts me.  And I know that look I saw tonight (which sent shivers right through me) was the start of something new, something wonderful, again. Maybe he realized that his mom was right - that I would always turn to listen, always stop what I am doing to respect his voice, and he need never fear an interaction with me. Maybe it was the realization that he could fight his autism - the parts of his autism he doesn't like. Will he ever be able to initiate with others? I'm not saying he will or won't - that's Matt's hurdles to jump and some hurdles he may not be able to cross, but I am hopeful - always, forever, hopeful.  But maybe ....  if he can do it with me, then there is always that hope that someday Matt will be able to initiate speech exactly when he wants to.....with whomever he wants to....and that would be ........ simply miraculous.

  • Freedom and the Bringer of Dreams

    Sometimes it’s hard to think of my 28 year old son as an adult. That’s because he’s sweet and gentle and soft-spoken… when he speaks, that is, as Matt is mostly non-verbal. Matt is moderately to severely autistic and has continued to make great strides in all areas of his life. As I said, he’s sweet and gentle and because he can’t ask me for anything I’m the one that usually has the role of teaching. Teaching is more than showing someone how to do something – it’s also about pushing him gently to do activities he would not otherwise do. Matt doesn’t ask me for anything - not because Matt is afraid of me, but because he is afraid of hurting me by requesting time for himself - Matt’s fear is of hurting my feelings. The fear of hurting another person’s feelings keep him quiet when it comes to things like initiating an activity on his own. He would never ask to do something on his own – seeming to be perfectly content to just hang out with me – that’s how he appears. But appearances can be misleading – especially in autism. I have had many roles since my son’s diagnosis – the super sleuth (figuring out what his behaviors and gestures all meant), the warrior mom (making sure he received what he needed from school staff), and the teacher. And many years ago, when it dawned on me that Matt could do many things on his own, I began learning the art of letting go – which as any good teacher will tell you, is a must if you want to see the child soar with the eagles. Letting go has remained the hardest of battles because I must fight against my own fears of the ‘what ifs’. It also requires me to investigate my son’s inner core, by asking in very simple ways, in order to discover what he wanted to do. Matt only had to answer with yes or no and I used his answers to slowly guide me to his center.   What I found there was something very basic to all human beings – a desire to experience real freedom. Simple gestures such as, “Would you like to shop alone today” were always met with a resounding “YES!” And so began the quest for independence and freedom. Matt started shopping in a different part of the store than where I was, staying home alone when I went to work, and many other such activities that brought pure joy – just simple acts of freedom. I must admit that it was always harder on me than it was on my son. I had to fight my own fear each and every time – the fear of the ‘what ifs’. Each activity was also a practice session for something much, much bigger – learning to live independently. Matt has now been living on his own in a small apartment in a complex for the elderly and disabled for eight months – and he’s doing wonderfully. Independence, defined as ‘free from support or aid’, is an ongoing adventure. I may still provide a small bit of aid and support, but he is doing very well on his own, because he has no fear of freedom. His road to independence has been a long one. It required practice in all areas and for many, many years; practice in asking questions, doing laundry, making his bed, cooking for himself, shopping for himself, saying “hi” to his neighbors, and of course, practice in being alone. The thing is, is that Matt loves being alone much of the time. His love for being In charge of what sounds he surrounds himself with, which activities to do – from watching TV to playing video games, to drawing - without any pressure to converse, is easy to understand. His stress level drops when he is on his own and there’s a calm and quiet joy that fills the air around him when he is. But as I said before, Matt would never ask me if he could do other things on his own for fear of hurting my feelings - so it’s up to me to continually ask him and give him choices. This is where trust comes in. Matt has to trust me to keep his best interests at heart – and he does. In trusting me I am under pressure to constantly seek out ways for him to experience the most joyous of emotions for Matt - freedom. Freedom, in this case, is defined as ‘the absence of constraint in choice or action’. Matt needs time to be himself, time to do what he wants without the pressure of conversation, without the fear of disappointing another human being. Time to just be . . . Matt. That is a huge responsibility for a parent. Step 1 - I must be able to get inside his head and find what he really wants. Step 2 - I must be willing to set aside my own fears in order to give him his freedom. Neither step is easy, but as the years slipped past I got pretty good at doing both. Let me fill you in on a little secret – my fears of all the ‘what ifs’ has never gone away. I have them every single time, but I push past them because I know in my gut what Matt really wants. I can push past my own fears because I have watched my son push past each one of his fears. Basically, I knew I could do it because I had a great teacher in my son, who showed me every day throughout his whole life what true courage really is. So it should be as no surprise that after hiking various sections of the New River Trail that I found the courage to ask my son if he would like to hike the trail alone sometime – knowing in my heart exactly what the answer would be. The joyous expression that swept over his face told me I was correct in my assumption. “YES!” he announced gleefully, pumping his fist in the air for emphasis. He immediately wanted to know when and we made a date for mid-July. I had accomplished step 1. I knew he wanted to hike it alone. As for Step 2 – conquering my own fear - that was another story. Was I scared to let him walk alone? Yes. But I could see it on Matt’s face that me asking him – just asking him if he wanted to – had made his day. It was the right thing to do. I needed to just suck it up and deal with my own fear. When the big day arrived it just happened that it was raining and Matt, hating the feel of rain on his skin, accepted the fact that we would have to reschedule. We chose the very next weekend – and it just so happens that yesterday was that day. At 5pm the temperature still hovered near 100 degrees and I thought maybe he would cancel the walk due to the heat . . . but he didn’t. He had been waiting months and had rescheduled once already – nothing could keep him from it again. He gathered his supplies; a NRT map, a water bottle, a hiking stick, his cell phone, and his camera and marched purposefully to the Jeep. Matt was ready . . . the big question now was . . . was I? I had let my older son, Christopher, know of Matt’s excursion and since he lived nearby I asked him if I could stop by while Matt was on his journey. I would need distraction from my fear and Christopher was more than willing to help me through it. Plans were made, supplies gathered and as we made the drive over to the drop off area I was more quiet than usual. I glanced toward Matt. He smiled. “Whatcha thinking about buddy?” I asked. “Um…” He couldn’t find the words. “Are you thinking about your walk?” I asked, knowing that he would be more at ease with giving a yes or no answer. “YES!” he exclaimed. Enough said. Matt was too excited to converse, so we continued to ride in silence. Matt started fidgeting as the spot came into view and I knew in my heart that this was big – this was sooo big. He really wanted… really needed… to do this. Matt hopped out of the Jeep as if he had been sitting on springs and immediately began putting his items in his pockets. I grabbed my camera and asked if I could get a picture of him before he started. He was happy to oblige – picture proof of a much needed adventure. As soon as I had taken his picture he smiled hugely, waved excitedly, turned on a dime, and started off. I stood there watching, unable to take my eyes off him until he rounded the first bend and disappeared from view. My mind was spinning. I felt excited and proud and certainly scared. As a parent I couldn’t help but run every ‘what if’ scenario through my head – ones I had thought of all week and new ones that just hit me as he disappeared around the bend: muggers and serial killers, snakes and bears, accidents, injuries, bullies…. The list went on and on and I knew it was time to head over to Christopher’s house for some much needed distraction. I gave Christopher a big hug when I arrived a few minutes later . . . did he feel me shaking? No matter, he knew I was in need of distraction and he was superb at it. He kept me talking - about everything from the new kittens born in his yard the day before to the progress of his growing pug, Lucy, to home repairs and car accessories. Even with all the conversation deep down I felt time was dragging its feet. I glanced down at my watch and realized time was actually flying by - forty-five minutes had passed! I wondered, ‘Would Matt be at the bridge over the river yet?’ I picked up my phone and noticed I had no signal . . . moment of sheer panic gratefully followed by remembering Christopher had a landline. I grabbed up his phone and dialed Matt’s number. I had to wait through 2 rings – pure agony – before he picked up. “Hi Matt!” I said happily – Matt was not to know how worried I was or he would immediately feel both guilty and sad. “Hi!” he greeted back. “Are you on the bridge?” I asked. “Almost.” He replied. Okay, that meant he was already halfway. Wow. The conversation lasted all of one minute but it was enough to let me breathe again. I stayed with Christopher another 30 minutes and then drove quickly to the pick-up location. I pulled into the parking lot, which had a great view straight up the path in the direction Matt would be coming from. I sat there staring up the path, then I read a few pages of my book . . . but I couldn’t concentrate very well. Seems it’s hard to stay focused when one is looking up every 30 seconds . . . Then I spotted him – a tiny dot moving quickly and purposefully. I got out of the Jeep and waved my whole arm over my head and immediately received a confirmation wave. Matt was walking briskly and confidently and within minutes I could make out the grin – that smile from ear to ear – and knew that Matt was feeling wonderfully. Freedom was his. The drive back to the house and then back to his apartment was one filled with my son singing loudly to the radio interspersed with giggles and smiles. He excitedly told me of a squirrel he saw in a tree, a women on a bike, and a couple pushing a baby stroller – but it was seeing the squirrel that had really been the high point of his walk. His body language and facial expressions conveyed huge amounts of information and I read each and understood each – he didn’t need many words to tell me of his hike and how wonderful it all felt. I knew. Once again my wonderful son showed me what it was like to feel whole, to feel free and independent. Words were simply not needed. This beautiful experience - hiking a 3 mile trail alone – required a great deal of trust between us. One would assume that I mean I had to trust my son to hike alone, and I did, but the majority of trust came from Matt. My son had to trust me. He had to trust me to let him go. Matt can’t ask me for these simple joys, these moments of pure freedom to do as he wishes. He has to trust me to give him these opportunities, trust that I will fight my own fears and summon the courage to let him stretch his wings and feel free. He has to trust me to find the ways for him to experience freedom – something most people take for granted. If I didn’t seek out those experiences he would never have them - and that is the point of this long essay . . . it’s my responsibility to seek new ways for him to experience freedom. It’s not just about what I can teach my son anymore – it’s about him teaching me and living up to the trust he puts in me. Trust – defined here as ‘having reliance on and confidence in the truth, worth, and reliability of another person’. He trusts me to get into his mind and figure out how to give him that one thing that makes him feel whole – a sense of freedom. It’s not enough that he is living independently, he needs his freedom too. Matt trusts me to figure it all out and in giving me his trust it seems my role in his life has changed yet again. I have undergone the transition from super sleuth to warrior mom to teacher – but I am not simply a teacher anymore. It seems I have now become the bringer of dreams. My sweet and gentle son has entrusted me with this awesome new mission – an honor that makes all the ‘what ifs’ seem small and petty and inconsequential. So I will continue to slay my own fears, one day at a time - and I know I can do it because my new role is so much bigger, so much brighter, that no fear can withstand it. The definition of this autism mom is now ‘the bringer of dreams’. I am the bringer of dreams. And someday, I hope you will be too.

  • Fear and Autism

    FEAR and Autism Fear.  When trying to understand the mind of an autistic individual it’s the one thing you absolutely must comprehend.  Temple Grandin brought it to light for millions of parents when she said in her book, Thinking in Pictures, that  “The principal emotion experienced by autistic people is fear”.  I welcomed her insightful statement and prayed others would see that one simple sentence above all others.  I understood the reference immediately because many years earlier I had come to the same conclusion while watching and learning from my moderately / severely autistic son, Matt. I saw it in his first autistic behaviors, and I felt it radiate from him long ago, beginning when he was only 2 years old.  It was my first priority as a parent to an autistic child – to make him feel safe.  Not long after I realized that the more I made him feel safe and protected the more progress he made. Matt still battles fears today, at the age of 28.  He has shown me time and time again just how courageous he is as he tackles each fear – especially the really big ones; the ones connected to socialization and verbal communication.  He easily picks up on other people’s emotions and it’s their emotions that drive his ability to interact.  For example, if he is around other’s who display smiles and have lighthearted voices he will attempt to socialize, even if it’s just standing near them.  If they show anger and / or frustration he feels overwhelmed and uncomfortable.  These two emotions scare him – as if a thousand bees are stinging him at once.  He is instantly afraid and anxious to get as far away from the feeling- and that person - as possible.  And if he is around someone who is sad, he feels like he could cry too, wanting to comfort them, but not sure as to how.  The emotions of other people can confuse him and if he is confused, then he is also scared. With all that said, let me tell you a story . . . about this same young man facing one of the biggest fears of his life, and the courage that it took to conquer that fear. Matt’s biological father, Duane, had not been in his life since he was a toddler.  He has no memory of him.  Their first encounter was in a hospital, where his paternal grandmother was in intensive care and the outlook was very bleak.  For Matt to even enter the hospital and see his beloved grandmother hooked to tubes, smell the strange smells and hear the unfamiliar sounds of medical equipment was a tremendous step.  He did it simply because his older brother did.  Matt’s older brother, Christopher, is his hero.  Much of Matt’s progress over the years came from his desire to be like his older brother.  So, when Christopher entered that hospital, Matt did too. I had tried to prepare him for that day, explaining why his grandmother was there and that he would probably see Duane.  The concept of having another dad besides his step-dad, Tom, was confusing enough.  After all, how could there be 2 dads?  He took in the information and was still trying to process it when he actually met him.  Because Duane had not been in his life, he didn’t understand  the severity of his son’s autism.  He didn’t know the intricacies of how to interact.  He didn’t comprehend the fear.  He introduced himself.  Matt, not knowing what to do looked downward and took a step back – typical fear response to anyone he didn’t know.  Duane, reading the behavior as possibly antagonistic, took offense to the behavior he saw in Matt and said, “Fine, be that way!” in an angry voice, and walked away.  Remember where we were.  There was a lot of confusion that day, and a lot of emotion in that waiting room, compounded by the stress each family member was feeling.  Although I understood how such a reaction could come about it didn’t change the fact that for Matt, it was too much and that particular interaction scared him tremendously.  His self worth was instantly scarred. Not long after, Duane tried to get back in touch with his boys and for my older son it was a welcomed step forward.  For the past few years now they have been in contact with each other and once a year near Christmas time, Duane even travels 1000 miles just to visit - good for him.  Unfortunately, year after year he does not see his youngest son, Matt.  Why?  Because Matt said “no”. For Matt, just the knowledge that Duane was close brought immense fear. He wanted nothing to do with him. It’s not like I haven’t tried to help him, but every time I brought up Duane’s name Matt went into fear mode; pacing, rubbing his legs, shaking, eyes cast downward.  My only recourse was to do what my youngest son needed me to do.  He needed me to stand strong and keep him safe. He needed me to say what he couldn’t - tell Duane “no”. Now I’m sure it must have appeared to others that I was the mean ex-wife standing in the way of renewed father-son bonds, but I simply didn’t care what other people thought.  Matt needed me to protect him.  I had promised him I would.  So even though my oldest son and Duane were now speaking and getting to know each other, my youngest son would not even attempt it.  He remained firm in his decision to stay away and I backed his decision . . . every single  time.  I remained steadfast in my promise to protect him, because Matt, in his fear, seriously needed me to do just that. Meanwhile, I had some investigating to do.  You see, I wasn’t sure where the fear came from.  Was it the 2-dads thing?  Was it the “stranger” thing, or was it the interaction – that one simple interaction, that was at the root of this fear?  I would love to say I figured it out immediately – but I didn’t.  It took several years.  So many questions had to be asked.  Matt is mostly non-verbal.  It’s not like we sat down and had a nice long conversation.  I had to watch his body language, ask just the right questions, and pick up on thousands of non-verbal cues before I finally figured it all out. Once I knew the source of the fear I had to figure out how to heal the wound.  How does one state something like that to their ex without hurting their feeling along the way?  But hurting the feelings of others aside, the real goal here was to get rid of the fear my son carried.  There was no personal agenda – just a very strong desire to help Matt overcome a terrible fear.  He needed to be free of the fear that haunted him every time Duane’s name was mentioned, and in addition, his big brother needed to be free of that “in the middle” position he was continually put in.  Christopher wanted to know his dad –of course he did.   But he also wanted to keep his brother happy and safe.  It was an awkward situation for him to be in, to say the least. It looked like this year would be no different.  I told Matt that Duane was coming down to see Christopher and asked him if he wanted to meet him.  Matt immediately said “No!”  I changed the subject and life went on.  Recently, Matt has been transitioning to a place of his own and he has had enough on his plate without me forcing him to face his worst fear . . . or so I thought. Then just after Christmas I happened to run into Christopher while I was in town.  He told me he had a Christmas card from his dad for Matt and it contained a gift card to Game Stop– a much loved place to buy games for Matt. I thought about this….. it rambled around in my head and wouldn’t go away.  This might be just the right incentive for Matt to meet Duane.  A gift, a bit of shopping, and the coffee shop was right next door – so I would be there if he needed me.  Hmmmm…….. I told Christopher I would bring it up with Matt, and we could possibly meet at the coffee shop.  We could then take it from there.  Now …I had to tell Matt that he would see Duane.  How I did and when I did were big factors in the possible success of such a meeting.  I decided to tell him just before we went so that he would not have time to work himself into a frenzy …. At least, that’s what I hoped. I went over to Matt’s new apartment and he happily met me at the door –ready to come back to my house for a few days. I asked him to sit down, we needed to talk. I told him about the Christmas card.  I told him about the gift-card inside.  I asked him if he could meet Duane to get it.  He immediately went into fear mode.  His hands rubbed his thighs over and over in an “Oh God, oh God”  type of stroke. His eyes went immediately to the floor. His legs were shaking, his hands were shaking - he was intensely afraid. “I will not let anyone hurt you”, I explained, “and I will be in the coffee shop right next door until you come back.  Christopher will be with you in the game store and will not leave your side.  No one – absolutely no one – can hurt you.” The thigh-rubbing continued, “Will you do this to get your present?” I asked. “Ummm” he tossed the idea around, but he shook his head “no”– not even for a gift-card. “Would you do this for your brother?” I asked.  Yep, I brought out the big guns – using his love for his brother.  I explained to him how his brother was in the middle and how uncomfortable a place that could be.  I explained that in doing this one thing he could make his brother smile. A frustrated “Ugh!” and a nod of the head and I knew he would at least attempt it. Next, we practiced the meeting a few times - me playing the role of Duane handing him a card and guiding Matt in how to reply, “Thank-you for the card”.  In the anxiety of the moment he would not be able to speak unless he had a practiced line waiting.  “10 minutes, Matt – just 10 minutes.”  He looked at me, “10 minutes? Oh, OK, 10 minutes” and off we went for the historical meeting of Matt and Duane at the local coffee shop. We arrived first.  I practiced 2 more times with Matt as we found a couple chairs free next to the door.  Christopher walked in alone.“Where’s your dad?” I inquired.  “He’s just outside, waiting to see if it was OK”.  Great!  That signaled to me that he was prepared to go slow, take it one moment at a time…. Good for him.  “Tell him to come in.”  Christopher waved him in and suddenly there he was.  Matt amazingly held his ground.  His legs shook slightly.  “Hi Matt”, Duane said happily as he handed Matt his card.  As practiced, Matt opened the card, read the words, and then admired the gift-card.  He politely said “Thank you”.  Now it was time to actually step away from me and go with them next door. Matt’s eyes met mine.  He was putting his trust in me - that all would go exactly as I had told him it would. “Christopher is with you, Matt.” I reminded him softly.  He looked over at his brother as if to check– yep, still there – and allowed his brother to take control.  Christopher happily escorted Matt out.  Duane kept a smile on his face.  OK, so far, so good. I sat down, adjusted my coat a bit and took out my phone.  I had just dialed Tom – my husband – when Matt came back in. “Done already?”  I asked. “Yep!” Matt replied. Christopher was laughing, explaining how he had walked in the store, grabbed the first 2 games he saw, paid and left.  Done and done. “Well, how about we sit for a minute and visit?” I asked.  Matt waited to see where Duane sat down first before taking his own seat – one as far away as possible. I sat next to Matt and patted his leg. We each asked Matt some questions, helping him to speak, helping him to shift his mind onto other things and when it looked as if he was a bit more comfortable, I suggested to Matt that he show off his new apartment.  “You can ride with me Matt, and I will stay with you.”  Matt hesitantly agreed.  On the ride over I explained that it would go fast – just a quick tour. His brother would be there and nothing bad would happen.  “Nothing bad, Ok, Ok, Ok, Ok” he chanted on the short drive over. Matt did show off his apartment.  His brother was great at keeping the conversation happy and lighthearted.  Duane did a great job in doing the same. Christopher bragged on his younger brother’s artistic abilities, his music collection, and his wonderful successes. Duane marveled at all of it and happily told Matt how proud he was of him. Matt relaxed a little more with each gesture, with each affirmation of his worth.  He held his head higher.  He stopped shaking.  Upon leaving, Matt said his good-byes and started toward my Jeep.  “Matt, remember to shake hands.”  I whispered toward him.  Shaking hands is one of the things he has been practicing all his life, but has always needed a reminder to do.  He turned around and promptly stuck out his hand unafraid.  “Bye!” he said happily as he shook Duane’s hand.  It was over.  Matt hopped in the Jeep. As we pulled away Matt turned on the radio and began to sing.  He was happy again.  “He wasn’t so scary, was he, Matt?” “No!” he replied happily. Matt had just conquered a fear . . . a really big fear.  Upon arriving home I had a message from Duane that in all that had transpired he had forgotten to get a picture and asked if he could get one the next day.  “Matt, would you mind going to Christopher’s house tomorrow so Duane can get a picture of both you guys?” “Sure!” Matt replied happily . . . no big deal.  Yep.  Fear is abating.  Confidence is returning.  Mission accomplished. We did get that picture the next day.  It took all of 10 minutes and Matt smiled for the camera.  He stood tall.  He wasn’t afraid of this guy anymore.  What happens from here on out is anybody’s guess.  Will he revert back to being fearful again next year?  Will he need to face that fear again?  Not if I remind him of what he did this year. Not if Duane continues to show a smile and speak in soft, lighthearted tones.  Not if he realizes now that the principle emotion in autism is fear.  If Matt feels safe he will continue to make progress and it’s up to us all to make sure he does feel safe – every single day.  The severity of his autism means he will always battle his fears.  But parenting a child with autism means you need to hunt down those fears and pull them out into the light of day . . . where, just like opening your eyes after a bad dream and seeing the rising sun – they melt away into nothing. When trying to understand the mind of an autistic individual it’s the one thing you absolutely must comprehend – that fighting their fears is something they have to do every day.  Their courage keeps them moving forward. If you are a parent of an autistic child take a deeper look.  That child standing before you, twirling, flapping, lining up their toys, or maybe watching the same show over and over, is the bravest person you will ever meet.  And if you don’t see it?   Well then, obviously you’re just not looking deep enough.

  • Critical Thinking - as simple as reading a map

    At the age of 4 ½ years old my son was still not doing age appropriate behaviors.  When we took him back to the Kluge Center for Children for his last follow up evaluation they ran a battery of cognitive tests.  The results were still grim and not only showed he had a bimodal IQ (certain skills were higher than average, and certain skills were very low) but showed he was incapable of independent thought.  I immediately took issue with the way the tests were done.  How could they possibly say such a thing?  Didn't they see the wonderful little boy I saw?  This was in 1990 and autism was rare and thought to result in a robot-like child without the ability to learn.  It wasn't just the doctors and the therapists, it was also the way special education teachers thought of the disorder.  Matt was already in pre-school - a special education pre-school - where he spent most of his day hiding under tables or pacing in the back of the classroom.  No one saw any point in teaching him because, well, he couldn't learn anyway.  How does one change that pattern of thought? The way I saw it, Matt’s sensory processing difficulties were not taken into consideration with the types of tests they did.  So while the curious behaviors of autism took center stage the child underneath was all but forgotten.  I finally had my fill of testing when Matt failed a test designed to evaluate his level of critical thinking.  To this day I take issue with how it was evaluated. Consider this method for yourself - Matt was shown a box with a lock on it and given a key.  The idea was to see if he possessed critical thinking skills and independent thought.  Evidently, the average child can do this even if they have never encountered a lock before.  I’m skeptical of this assumption.  The lock and key test was sprung on him suddenly. The occupational therapist gave him a key and set the locked box in front of him.  She then began timing him with a stop watch. He had never even seen a lock or a key, and he had no curiosity about what was in the box.  After several minutes she secretively marked her grade sheet. “Did he fail?”  I asked. “Well, he didn’t even attempt to open the box and never showed any curiosity.” She stated back. “But Matt can do that trick” I countered, “give me the key.”  She politely handed me the key, placating the hysterical parent before her.  “Matt, watch this!” I said directly to Matt as I sat on the floor beside him.  Matt watched as I put the key in the hole, turned, open the lock, opened the latch and open the box.  I picked up his toy car he had brought with him and placed it in the box.  I shut the lid, flipped down the latch and put the lock back on. “Listen” I said as I clamped the lock down until it produced an audible “click”.  Matt watched the whole sequence.  His car was now in that box and the box was locked.  I handed him the key.  Matt put the key in the hole, turned it, open and removed the lock, flipped the latch and opened the box to reveal his beloved possession still intact.  A wonderful smile lit up his face.  He was genuinely relieved and now fascinated by the lock and key. “See?” I said to the therapist.  She looked at me as if I had just spit on her.  “Well, he was not able to do it without you showing him” she replied. She never changed her grade sheet and Matt failed the test.  In his medical record it was recorded that my son was unable to think critically and had no measurable independent thought capabilities. That last visit really was the last visit as far as follow-up evaluations went.  Their methods were questionable and the results highly inaccurate - basically it had really gotten under my skin and I refused to accept their conclusions.  The problem was how do I prove them wrong?  So while I was unwilling to accept that Matt lacked thinking skills I had no way to show them that he did.  His autism behaviors - the outward signs of autism - always took center stage.  Testing had shown there was no one present underneath - my beautiful son was considered to be mentally incapable of learning.....just a robot.  He was in a special education pre-school class, but he spent most of his time under a table or pacing at the back of the room . . . and the only person it bothered was me. As the years crept by Matt continued to show me skill after skill, but nothing I could declare as an ability to think critically (where a problem is analyzed, worked through, a solution tested and evaluated, leading to logical thought and self-guided learning).  I watched him as he played and although I was sure he was thinking through what he was seeing and evaluating what he was hearing, I knew that just synthesizing sensory information was not considered true critical thinking.  That all changed with the introduction of the most unlikely educational tool - the video game. Matt grew up with the release of video games to mainstream America.  He learned to play because he was fascinated by the movements on the screen - which he could control.  He mastered such favorites as Sonic the Hedgehog and others and would spend hours playing.  I remember when the video game for Jurassic Park came out – it was a “must” purchase for Matt as the movie had been one of his favorites.  The game promised lots of dinosaurs and jungles and various weapons of destruction – what’s not to love?  I learned to play the video game too as a way to interact with him and I even made it to the end of the game eventually, but I didn't play very often.  Matt, on the other hand, was a Jurassic Park ninja at the age of 7.  He played daily and for hours at a stretch. He had to win – just had too!  He competed with his step siblings, Jacob and Sarah, and with Tom and me and he won 99% of the time, but not against his older brother, Christopher.  When those two played it could be best described as a clash of the titans.  Speed clicking the controller, thumbs flying, bodies in motion, eyes glued to the screen – a true battle between video ninjas. It was because his older brother was so good at it that Matt made it his mission to learn all the secret codes that would garner him more hidden points and he learned to decipher the simple schematics of the island map which kept him headed in the right direction toward winning the game. The map had a “you are here” and showed the various locations of battles and treasures and how to get to them.  A map was a way to get from point A to point B and this revelation led to an interest in all maps; geographical, road, world maps, etc. This skill bled over into his drawings and teachers began to sit up and take notice.  Although he was non-verbal he could name the capitals, draw a state's shape, write the sequence of route numbers from one place to another - knowledge was showing up in his art.  Even deciphering the symbols in the key of a map provided clues on where the next turn would be on any given road, where the highest elevation was in the state, or when we traveled across a border to another state.  Reading a map was like seeing the future, as he could see ahead to what would come next – removing some of the mystery and fear of the unknown.  I didn’t realize the importance of maps until he made one of his very own, but I didn’t see the importance of it right away because my attention was on something else . . . my garden. (the above picture is another map of a boxcar retreived from the yard on its journey back to the house) I was outside designing and planting new flower beds and deep into creating a new walking path. Matt was outside with me.  Matt could care less about gardening but he was fond of making ramps in the newly tilled soil for the pleasure of launching one of his small toy trucks into the air.  The ramp was continually modified at ever steeper angles in order to send his toy in ever higher trajectories . . . it’s a Matt thing.  He was fascinated by trajectories at that age and many a toy was launched off the deck, the kitchen countertop, or any high surface so that he could watch the object out the corners of his eyes as the toy  flew in various shaped arcs (depending on their weight) until it crash-landed.  His joy in this activity was obvious as he would jump and twirl with glee after every successful launch.  It was also very routine for him to carry paper and pencil with him at all times in case the need to draw these trajectories and crashes overcame him.  And so it was that particular day that Matt had a small toy truck he was launching off the dirt ramps and paper and pencil by his side as I worked in the garden . . . just another “normal” day. A few days later as we were having lunch Matt brought me a picture.  The paper had a newly drawn picture that I couldn’t quite decipher: a confusing set of lines, an X and what appeared to be a truck.  The paper had a bit of dirt on it.  Not sure what I was seeing I simply told him how nice it was and gave it back.  He handed it back to me, but this time he pointing at the X and exclaimed, “My truck”. Thinking he wanted me to acknowledge his scribble of a truck I simply said, “It’s a nice truck”.  Evidently my reply was not what he wanted and he pointed again, “Truck”. O.K., what is it about this truck?  I stared at it, trying to make sense of his picture.  There were straight lines and a few crossed lines and the “X” and a simple sketch of a truck. I just wasn’t seeing what he had intended me to see and sadly handed it back to him.  Frustrated with me, he took back his artwork, turned and left.  We spent the next several hours in the house and the normal sounds of him playing his Jurassic Park video game filled the air.  A few hours later it suddenly occurred to me that the house was too quiet – the sounds of dinosaurs screaming had ceased.  I went to look in on Matt.  There he sat in his room, his video game on pause, drawing the animation of the Jurassic Park island displayed on the screen. The following day he brought me another picture and again pointed to the X.  “My truck” he exclaimed again.  Again I looked it over and again I did not see what he needed me to see.  But Matt never gave up.  Day after day he brought me a picture of lines, an X and a truck.  Try as I might I couldn’t figure out what he was trying to tell me.  Several days later I took him back outside to play while I again headed for the garden. When Matt realized we were headed outside he ran back to his room to get his picture.  His excitement caught my attention and I watched as he stopped at the door, looked at his paper, and then took very deliberate steps across the deck and into the yard.  I wish I would have continued to watch as he took each step according to plan, but I missed it. I had assumed he was just playing some odd Matt-type game and instead of watching him I went to the garden.  Before I started digging I looked over at Matt.  He had also come to the garden.  Paper in hand, he dropped to his knees and began to dig. Matt didn’t like to dig, so this was something new.  Now he had my attention. I watched as he turned over the dirt by the handfuls until finally his hands brought up a toy truck.  The light bulb finally glowed above my head as I exclaimed aloud, “Oh, I get it!” Matt’s picture was a map.  I asked Matt if I could see his picture again and I finally saw what he wanted me to see.  He had buried his truck in the garden and had drawn a map to its location.  The confusing set of lines had actually been a fairly accurate diagram of the deck and lawn.  The truck was buried treasure, buried underground and the X – well, the X marked the spot. A big smile shone brightly on his face as he happily showed me his map. As I looked deeper at each line I noticed he had added a “You are here” sign on the line that represented the back door.  I understood.  Matt must have added it after I had trouble deciphering the last map. Determined to make me understand he had gone back to his game, re-studied the island map and tried to match the details of that map to his own.  Now, having successfully communicated to me what he wanted me to know, he stood triumphant, truck in one hand and dirt-smudged map in the other and marched back toward the house with his head held high. I stood there amazed at what just transpired.  My son had just demonstrated critical thinking.  He had used the island map on his video game as a template for making his own map. He then tested the map, and seeing that it confused me, had adjusted the map to more accurately depict the starting point. Matt had thought through a problem, analyzed it and tested it – and repeated the stages as he sought new information on how to communicate his map to me. These are same steps that demonstrate the use of critical thinking skills.  And while this may seem like common knowledge now, back in the early 1990s when autism was rare, this skill was something new.  His use of critical thinking - using something as simple as a map - showed me there was much more to my son then the unique behaviors associated with his autism.  The assumption that he would never be able to learn was finally debunked.  The best part was watching his determination to communicate with me.  He had given me clues, tried to tell me the best way he knew how (with pictures) and remained steadfast in his mission to communicate his new found skill with me.  It was obvious – finally – that his mind was so very capable of deep, independent,  thought. So here was the fork in the road and now it was up to me to decide which way we would go. One direction led toward a special education classroom and basic skills learning and the other toward challenging his mind and his abilities to think.  I gathered up all my courage and decided to take the new, harder path, the one without road signs, the one that would push him to learn and think.  I decided to attempt something not done before by anyone here in southwest Virginia –  mainstream an autistic child into a regular education classroom.  There would no longer be a straight line from point A to point B.  This different road was certain to be very confusing and possibly impossible to traverse, but I was willing to attempt it.  I wasn’t scared. I had an ace in the hole, you see.  I had a map.  I knew my son could give me the clues to what he was capable of along the way – and just like a map to his future – I knew if I got stumped on which way to turn or the number of steps to take to get to the next destination it would be OK, because Matt didn’t just draw the map, he taught me how to read it. We changed our path that year – it was 1993.  We started to transition him from a contained special-education class to a regular class in 1994 – 1995 and he was fully mainstreamed into the third grade in 1996.  Although Matt is moderate / severely autistic and mostly non-verbal, he continued on in a regular classroom (with the help of his aide) throughout the remainder of his school years, graduating in 2005 . . . . with honors . . . as a National Honor Society member  . . . .and number 4 in his class. A road we took because he made a great map and taught me how to read it.

  • Walk with me, Matt

    “Walk beside me, Matt.” It’s a simple phrase and a gentle nudge for my 27 year old son to step in line with me as we walk through the store.  Matt obliges.  His long legs only needed two extra strides and there he is, on my right hand side, walking in step with me. “Remember Matt, you are an adult, just like me, and you don’t need to walk behind me – that’s for little kids.” As I speak, a mom with three small children go past us – mom tiredly pushing the shopping cart as her three little ones walk, twirl and skip behind her.  Matt sees the parade before us and looks at me.  He smiles.  It clicks. I can’t remember when I first walked into a store without carrying my son.  I can’t remember the first time we walked together with me holding his little hand.  These transitions were slow and not really purposeful, they just happened as natural as could be. I do, however, remember the first time he went into a MENS room instead of coming with me to the LADIES room.  I remember the fear I had, how my stomach was tied in knots and my mind whirled with all the “what ifs”.  He was between 7 and 8 years old.  I suppose for a neurotypical child that age it would be a bit extreme to finally allow such a minor event as restroom privacy, but for my son, Matt, who is moderate–to-severely autistic and mostly non-verbal, it was a huge step forward.  Allowing him to be on his own, even for a short time, was an extremely stressful event for me. I remember the first time I let him shop alone, Matt was in his early teens.  We were already in the store and he was right behind me, trailing along as we went from aisle to aisle.  I turned around and looked at my son. “Do you want to shop by yourself, Matt?” His face lit up as he examined my face to see if I had really just said that.  “Yes!” he replied. I went over a few ground rules of shopping alone and off he went, almost skipping with joy.  My husband looked at me in disbelief. “I can’t believe you just did that.” He said worriedly. “Well, he needs to be able to do it and there’s no time like the present to start.” I replied, sounding much more sure of my decision than I really was. I remember we made it a game.  We shopped for all of 5 minutes before we went on the hunt for Matt.  Once we spotted him we stayed in the shadows, watching him and giggling like little kids.   He was fine.  We always found him happily immersed looking over Lego kits, reading magazines, or examining computer games.   This was a routine for many months before we stopped hunting and spying and just relaxed and shopped. I also remember the first time I let him order his own pizza.  Matt had just turned 20.  He had always gone in with me to order.  Then one day he used his own ATM card and bought his own pizza – I was there only to help him speak (I told him the words to say).  He’d already had many years of practice with his ATM card and once the words came out he dipped into his pocket and pulled out his wallet.  He fumbled a bit with the wallet and he stuttered trying to give his order, but he did it. After many months of him giving his own pizza order with a safety net (me) I knew he could do it completely on his own.  I never planned it.  It just happened.  One day when we went for pizza I unexpectedly changed our routine.  I pulled up to the curb and gently nudged him. “Go ahead, go in and order your pizza by yourself.  You know how.”  Again – his face lit up.  He did it . . . all . . . by . . .  himself.  As he walked back to the car, pizza in hand, he held his head high and strode confidently, as if he had just been given the keys to the kingdom. Yes, I remember those steps.  I remember the way his face lit up every time he took another step toward feeling like a man, the steps that signaled to me that he could be independent if I just walked with him a little while longer, just a little further. I don’t remember the day it dawned on me that my son could do anything – seriously, anything – he put his mind to.  Seems I have known it all along, but I still stepped cautiously, waiting for the one hurdle that would stop him. In the back of my mind, I was always prepared for the obstacle that would be too much.  The one that would smack me back to the reality of conventional wisdom of the time, that my severely autistic son would not be able to have a life of independence. Yet every hurdle to independence was laid down as Matt moved ever forward.  Along with every hurdle was another nagging worry, “Would this be the one that keeps him from living on his own?”  And time after time I had worried for nothing.   Matt had this.  What I learned over the years was that the conventional wisdom was completely wrong, and throughout each transition from step-A, to step-B, I stayed hopeful.  I never thought about what my son “couldn’t” do, only about what he “could”. As we traveled up one hill and down another to get to where we are today, (Matt will soon be moving to his own apartment) I found one of hardest obstacles on our road was simply being able to convey the meaning of the sentiment, “different, not less”.  Matt, with all his great strides toward getting to this point, had never really viewed himself as equal.  For years and years I searched for a way to make him understand that his autism didn’t make him less of a person.  Although I had given him encouragement at every turn and taught him the skills he needed to fly on his own, I hadn’t gotten it through to him that he was not less for having autism.  Matt hates it so. But the truth is being autistic did make him feel less, so he tried hard to do the socially acceptable behaviors, make the socially acceptable replies, and he watched others, the neurotypical people, as his role models on how to get him there, to the place where he could feel not less, but equal.  It’s OK for my son to be autistic.  It’s OK for him to not want to be.  But it’s not OK for him to feel less because of it.  So maybe you can imagine how bad I felt when it dawned on me that when my son walked behind me, even by just one step, he was signaling to me that he felt less. I don’t remember when I embarked on trying to break that nasty habit, only that has taken years. I would wait for him to step next me but as soon as I would begin to walk again, Matt would routinely wait a fraction of second so he could follow.  Again I would stop and wait.  We would take a few steps together and then his gait would slow – just a second – and I would be leading once again. It must have appeared to others witnessing our interaction as some sort of strange dance.  Stop and wait, stop and wait, stop and wait.  The goal was for him to walk beside me without my asking.  Matt read my body language as he always did but this change confused him.  The years came and went and even though it still remained a long sought after prize, the dance did seem to get a bit smoother. I considered my ‘gently nudging my son to walk with me’ as a type of dance practice.  Someday, I hoped, someday my son would feel the need to walk beside me and this silly dance would be over. Even though I don’t remember the first time I asked him to walk beside me, I do remember how he felt each time he did.  I remember how simply being asked was viewed as such an honor, and how his face lit up just like it did when he was given the chance to go on his own to the restroom, to shop alone, and to order his own pizza.  Always happy to oblige, he would take a few large steps and slide in beside me with a smile on his face. But it never lasted very long and after a few brief moments in the sun he would revert to his old routine and follow me instead  - and his smile would dim. It’s was the need for an invitation that was a thorn under my skin.  I could see that when he walked behind me that he didn’t carry himself with that same sense of purpose and he didn’t shine with that wonderful confidence that he exudes when we would walk together – for when he walked beside me he glowed.  It emerged without constraint, emanating from his being unfettered and as natural as breathing.  We were just two adults walking together, side by side - equals.  For a young man who has used non-verbal communication to “speak” to me his whole life, this simple form of body language conveyed immense amounts of feeling and emotion to me. So I just kept nudging, “Walk with me?” regardless of whether we hiked a trail, shopped in a mall, or simply went for a walk down our road.  I yearned for my dear son to please just walk with me. I wanted him to feel it naturally, to fall in step without my asking and at the onset of each opportunity I begged silently, “Come on, Matt, just step right up next to me and match me stride for stride. I know you can do this” and I then waited to see if maybe this time he would.  It’s such a little thing I suppose, but it was important to me.  It was important to Matt too; he just didn’t realize it yet. As time went on it became my obsession.  I didn’t just want him to walk with me anymore, I needed him to.  When you live with someone who is mostly non-verbal you read every other form of communication, not the least of which was body language. I just knew if he could do it naturally, without prodding, that his body language would reveal that powerful message – a feeling of equality.  I just knew that in the initiation of that one simple movement of stepping in beside me without being asked (and staying there) he would be telling me he felt whole.  I believed that in that one movement he would reveal an unconscious affirmation of his own self worth. So when Matt saw that mother of three parade past us in the store I knew he understood.  It was in his eyes.  It was in his smile.  It clicked.  Matt realized he was no longer that little kid his mom fretted over if he was more than 2 feet away.  He was no longer that child his mom spied on as he shopped on his own.  He wasn’t the kid whose mom ordered pizza for him.  He was an adult, a soon to be an on-his-own adult, and he became empowered.  Matt took another large step, and we continued on through the store, side-by-side.  I never nudged him again. My son realized, thankfully, that he was equal. He was in charge of where he wanted to go.  His destiny was in his hands.  Sure, he was autistic, but he was OK. Different, but not less - never less.  Body language is powerful stuff.  Nowhere is the sense of equality portrayed any clearer than in how one walks with another.  That simple phrase first spoken by Temple Grandin is not just about whether someone neurotypical thinks of someone autistic as different, not less.  It’s also about how the autistic individual feels about themselves.  It’s been a hurdle – one much harder to clear than it sounds. Matt now walks with me, matching me stride for stride, confident, head held high and a smile on his face every where we go.  And he does so without my nudging him, without hesitation, and he stays in step.  You can be sure there’s a smile on my face too as I feel the power of that movement – the underlying confidence radiates from my son’s very soul.  Yes, he’s different, but not less. He gets it.  He is . . . equal.

  • A Rare Day of Punctuated Progress

    There are two speeds of progress in autism: gradualism – which moves very slow but steady, and punctuated progress –where gradualism is interrupted by times of back to back steps forward - spurts of progress that occur over the course of just a few hours or just a few days.  In watching my son progress through the various stages of development I have seen mostly gradualism – a slow and steady progressive change in behavior, social interaction, communication and intellect.  For me it seemed like almost every step forward in my son’s autism moved slowly – tiny moments that added up over years to make one big change.  Rarely have I witnessed the punctuated progress type of changes, but it just so happens that yesterday was one of those days. Although each event only lasted a moment they jumped out at me with great force.  The power of such a day was tremendous.  Each time it occurred I had to convince myself that yes, that really did just happen. It started out as just another “normal” day as I took my son, Matt, shopping to multiple stores in search of a birthday gift for his dad.  But at each one I was caught off guard by some small moment with tremendous meaning - each moment so powerful that it stopped me dead in my tracks and caused me to stare in wonder. Matt lives on his own in a small apartment specifically for the elderly and the handicapped.  He has moderate to severe autism and is mostly non-verbal.  Matt has only been transitioning now for a few months and is still learning the ropes of independent living, but his progress has been astounding, one of leaps and bounds. When I arrived at my son’s apartment yesterday I was greeted by smiles and high excitement.  He gestured me to look at the camera in his hands.  “Are we taking pictures today?” I asked. “umm” he struggled with his words as he took the SD card out and held it up. “Oh.  Are we getting pictures made?” I asked.  “Yes!” he exclaimed, happy that I understood.  He then directed me to follow him to his bedroom where he took a photo album box down from his shelf.  “I need my favorites”. He stated as he pulled one of the albums from the box and handed it to me.  There, neatly organized in one of his flip albums, were pictures of the Virginia Tech campus.  I noticed several of the sleeves were empty.  Matt wanted to fill them.  “OK, we can get the ones you want today – no problem.”  He put his photos away and started turning off lights – the signal that he was ready to go.  I could see he was very pleased with our interaction and smiled greatly. As he went to grab his coat I noticed he had not taken out his trash yet.  Three bags sat next to his back door.  “Do you want some help or would you rather do it on your own?” I asked, expecting him to tell me he could do it himself – he doesn’t ask for help because it’s a matter of pride.  Being a 28 year old man, Matt takes great pride in doing things himself.  Sometimes I can tell he needs help so I just jump in and do what he needs.  I try to not make a big deal out of it so his pride isn’t hurt and usually he is pleased that I do.  If it’s something he wants to do on his own he just gives a simple, “No thanks” and we move on.  But he doesn’t ask for help….he just doesn’t.  When I asked him if he needed help with his trash he looked at me, waved his hands toward the back door, struggled with the words for a moment and then stated, “I could use your help.” His statement caught me off guard. I smiled and grabbed a bag and together we walked to the trash container out back.  As we walked my mind was busy processing the fact that my son had just asked for my help. This time it was me who was smiling greatly. When we returned to his apartment he grabbed his keys and started to usher me toward the front door. “Matt, did you brush your teeth?” I asked, knowing that brushing is a very hard habit to instill – it has been all his life.  A look of  “uh oh” came over his face and he immediately headed for his bathroom to brush.  We’re still working on it . . . someday he will do this without prodding…..someday. As I waited I glanced around his apartment.  I noted everything was in its place. Each room was kept clean and organized and I marveled at how well he was able to take care of his apartment.  When he emerged several minutes later he gave me an exaggerated smile to show off those pearly whites.  “They look great!”  I remarked as he opened the front door and held open the screen door for me to go first.  He smiled, turned, locked his door and away we went to begin our shopping adventure. Today was a shopping trip specifically to get his daddy a birthday present and Matt was in high spirits. So you can imagine my surprise when I asked him where he wanted to go first and his reply was “GameStop”. “Really? GameStop?” I asked, taken back by his choice. Something wasn’t quite right evidently because his face dropped as if I had hurt him with my reply.  I waited a few minutes to see if he would clue me in.  No such luck. “Matt, I’m not mad, just surprised.  We are going where you want to go and you get to pick.  Don’t worry.”  I said, trying to bring him back from a perceived assault.  “Oh, OK.”  He replied, a small smile returning to his face.  “Are you getting a game?”  I asked, trying to direct him back to why were going there.  “Ummm… Ok” he replied, sounding a bit disappointed. Something was off but I wasn’t sure just what. Something was up, something about the video game store and I was racking my brain trying to make a connection.  We arrived at the GameStop where we parted ways for a short bit, him entering the store to buy a new game and me heading to the Starbuck’s next door. I returned to my Jeep and slowly sipped my coffee as I watched him look around at the various game choices.  I called my husband and told him of the previous interaction, about my voice and how it must have seemed harsh without me realizing it. I was bouncing off ideas of what could be up when Matt opened the door and climbed in. He had purchased a racing game I had never heard of .. . definitely an impulse buy.  No way was that why he wanted to go here today. That’s when it hit me.  I had promised my son that in February he could get a used PS3 from the video gamestore.  We had to save the money first - that plan had been made 2 months ago. It hit me that our shopping day just happened to fall on February 1.  No wonder he wanted to hit the GameStop first – it wasn’t a game he really wanted.  I asked Matt if he wanted to get his long-awaited-for, used PS3 today.  A look of relief and joy washed over his face.  Yep, that was it alright – the real reason we had to come here first.  But he couldn’t tell me and he  couldn’t just make such a purchase without confirmation. It was up to me to acknowledge it was Ok and I had not remembered until just that moment. Yes, sometimes I drop the ball…. When I didn’t acknowledge the purchase of a PS3 that morning Matt could not buy it, so he bought a game – any game - instead.  Tom was still on the phone so I handed the phone to Matt and told him to tell daddy what game he bought, then stated I would be right back, and headed into the store. It was time to get this right so Matt could enjoy his day.  I went straight to the service counter and asked the clerk about the 3 different kinds of used and refurbished PS3s he had available. I then told him that Matt would be back in to purchase one and asked if he could show them to my son, explaining his handicap, and asking for his assistance. The clerk was exceptionally nice and recognized Matt right off.  He was more than happy to help. Back to the Jeep I went and opened the passenger side door so I could see Matt up close and personal. Matt looked at me puzzled.  “They have 3 different PS3s in there and you need to pick out the one you want, OK?”  Shock, surprise, and glee all swept over his face has he handed me back the phone and marched into the store.  I ran the play by play to Tom over the phone as I watched.  The clerk had opened 3 boxes and took out each to show to Matt who inspected each one as a connoisseur of fine gaming.  A real-life interaction between my son and a store manager (a stranger) was taking place right in front of my eyes – this was a first – made possible by the clerk’s awareness of my son’s autism. Matt made his decision and purchased his favorite – the result was a smile ear to ear, a head held high, and a stride that revealed the empowerment he felt. All was right with the world again. I handed the phone back and Matt excitedly told his daddy all about his new gaming console. Our next stop was a sporting goods store but after a quick look around Matt realized there was nothing of interest as a birthday gift and headed back toward the door.  Two store clerks, a young man and a young woman, watched as we passed by and cheerfully said, “Come back soon”  and  “Have a nice day”.  Matt blew right past them without a word, without so much as a glance in their direction.  This was his usual behavior. “Matt, remember to say ‘Thank-you’ when someone says ‘Have a nice day’” I reminded as he opened the door. Matt suddenly stopped, turned around and walked back in. “Thank you” he said cheerfully and waved good-bye, turned again and headed out the door.  I looked at the clerks and smiled and gave a quick wave.  They both flashed smiles so big their eyes shined, caught off guard by the young man who came back just to say thank you.  As I walked out the door my head was spinning.  Wow…. Matt had never done that….made it a point to turn around and say ‘thank you’.   Until today he had always just moved quickly past people…. But today he turned around and made it a point to not only acknowledge their presence, but also said, ‘thank you’ and that my friends, well …. THAT was HUGE! Our last stop was one to Wal-mart…. Matt’s favorite store.  He was suddenly a man on a mission, going straight back to the briefcases and started looking them over.  I showed him how to examine them for pockets and perks for carrying a computer – something his daddy really needed it for.  Matt examined each and was left confused.  “Matt, you have several kinds of carrying bags, don’t you? Think about the ones you have and pick one for daddy that’s easy to carry, can hold a lot and protect his stuff – just like one of your favorite bags”  I said.  Matt thought about this.  The wheels started turning.  He had bags of every shape and size and I was sure he was looking over each in his mind’s eye.  It was starting to overwhelm him a bit so I suggested we take a break from the briefcases and go look at birthday cards. It only took a moment for Matt to find the perfect card.  He placed the card in the buggy, then looked at me and gestured he was headed back to the briefcases and I nodded – the ease of our silent communication always strikes me as amazing.  I stayed in the card aisle looking over the cards.  A few minutes later he was back and plopped his choice into the buggy. I looked at it and was a bit shocked to see his choice – a backpack made for computers, with tons of pockets, and a padded compartment for the laptop.  There were cheaper ones, and there were the regular shoulder strap kinds that Tom usually carried, but Matt had decided that daddy needed to carry something better, something easier to handle, with lots of padding and lots of pockets.  He had really thought this out.  Again, for the fifth time in one day I was stunned.  This was no impulse buy.  No, this was a well researched purchased.  Matt has done that type of critical analysis for purchasing something for himself before, but nothing this intense for someone else.  I was impressed, to say the least.  Matt then went back to the photo department and selected pictures for his album.  I hung back, preferring to just watch from a different aisle as he did it all on his own . . . yep, another first.  That made six…. Six leaps forward in one day. We drove back to his apartment and as we rode we made plans for the next day I would see him.  I helped him with his purchases, hugged him and he indicated he would call me later that day as usual.  As I walked back to my Jeep alone I started counting the multitudes of miracles – the steps forward, the punctuated progress of one surreal day. He initiated a conversation about his photos. He asked for help. He interacted with a stranger at GameStop. He actually told 2 strangers thank you, smiled and waved in a friendly exchange. He critically examined a product before purchase of an item intended for someone else. He selected photos and printed pictures without assistance from me. Count them…. 6 signs of progress in one day. It left me to wonder about how far he may go.  It seems as my son settles into his new place he is becoming more aware of his environment, more eager to get the nuances of social interaction, and is getting better at not only accepting help, but asking for help.  The ‘ultimate goal’ was to get him independent – and that is not just a simple move to a new place.  It means being able to interact with those in his environment, handle stress, take care of himself, ask for help when needed, and step up to the challenges that arise over time – ones you don’t know are there until they present themselves. I knew that moving to a place of his own was just the beginning of a whole new adventure – independence - but wow, I had no idea just how fast he would blossom after he did so. I feel more confident every day that Matt will be successful in his goal to live independently as I witness him blossoming in this environment.  My excitement continues to expand over his progress and I find I am looking forward to the next set of miracles – after all, another set could be revealed the next time I see him. They’re coming, you know…. More steps forward, more miracles, and more indicators that yes, my son can be independent.  I just know it, and all I want now is to be able to recognize each and every one of those miracles when I see them - because every single one is something his doctors predicted he would never be able to do….

  • A Home of HIs Own

    /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} It was a wonderful evening.  My son, Matt, was cooking hamburgers on his new electric grill in the kitchen while his siblings and their spouses were in the living room laughing and conversing with my husband, Tom.  I was with Matt, helping him to play the role of host.  You see, this was no ordinary party.  This was a house-warming party for Matt.  We had just completed putting his new apartment together that very afternoon.  It was a party 25 years in the making and each one of us were now witnesses to the impossible.  Matt’s dream of living on his own was finally coming true. Matt is almost 28 years old.  He was diagnosed at the age of two as moderate / severe autistic – and that hasn’t changed.  Although he speaks on occasion, he is mostly non-verbal and relies on other forms of communication; facial expression, gesture, and body language. He is highly sensitive to loud sounds, bright lights, strong smells and various textures and temperatures.  His heightened senses were so very hard for him as a young child, but he found a way to deal with his sensitivities and now handles the onslaught of environmental stimuli very well. The severity of his autism meant the chances of him one day living on his own, in a place of his very own, was basically zero.  This is a young man who 25 years ago should have been institutionalized . . . at least, the specialists all thought so. That was back in 1988, when autism was rare (1:10,000) and they assumed it would be more than I could bear, more than my family could handle, too much of a strain for all involved – but they were all wrong.  Needless to say, Matt came home with me from his weeklong evaluation, rejoined his family, and our journey with autism began in earnest. Is it no wonder then that I was amazed by my son every single day?  Is it no wonder that each tiny, minute step forward was a cause for celebration?  The first time his eyes met mine, the first time he called me “mama”, the first time he wrote his name, read a book, played with his brother Christopher.  The first time he threw a ball, participated on a team (t-ball), sat at a desk, touched my face to comfort me, bought a gift for another person, said, “I love you”, made the honor roll at school, ordered his own pizza, cooked his own meal, or washed his own clothes.  The list is as long as his life.  Each step was a powerful reminder of his courage and determination and the hope for his future stayed with me. With a diagnosis of autism and grim predictions from the specialists, was it any wonder that I worried over his future?  What would happen to this precious little boy if something happened to me?  Would they put him away like an unwanted toy and forget him? Even though the years sped by that fear remained.  What I needed was simply time.  I knew I could get him to independence – to that one magnificent goal – if I just had enough time.  The road has been a long one . . . of course it has, because nothing goes fast when you’re dealing with autism. Over the years I set goals and watched in amazement as he met them - day by day, month by month, and year by year.  How quickly he met the goal was not the issue, but whether he could do it at all.  Some goals took decades, like speech.  Others lasted only a few days, like alternating his feet when he climbed stairs.  For most goals, the progress was slow and steady - at a snails pace.  But after witnessing a few thousand miracles you realize the time it took to get to the miracle just didn’t matter.  And so we pressed onward - day by day, month by month, and year by year. But even a slow pace wouldn’t have worked if I had not been open to learning about my son - his cues, his preferred forms of communication, and accept him for who he was.  He was not like anyone I had ever known and in the beginning I had to resist the temptation to force him to fit into a mold made for the neurotypical.  Thankfully, I realized early on there was no reason to force him into any mold, for any label, for no mold could’ve contained him.  Matt was unique to the world and I needed to allow myself to follow just as much as I led.  I learned early on what my role in his success would be.  I understood, almost instinctively, that I was not just his teacher showing him how to button a shirt, hold a pencil, or in later years, use a stove.  I was also his student, learning through observation, deciphering hidden meanings, and empathizing with him at every turn.  If he were hiding behind a chair then I sat there too, with him, taking in the surroundings; the feel of the place, the lighting and the sounds.  If he repeatedly drew the same design on paper, then I hunted for what it meant until I figured it out.  Matt was my biggest mystery and I was his biggest fan.  Together we navigated the rough seas of autism - but we also drifted beside beautiful shores where we could see a future filled with smiles and joy - and independence.  All the signs were there.  We just needed time. My wonderful, amazing son has wanted a home of his own since he was 19 years old.  For 10 long years he has worked ever so hard to get the skills to live on his own.  And then one day last April I realized Matt was ready to attempt it.  The knowledge just came to the surface of my mind and I couldn’t shake it.  I have known for several years that he was ready to try his wings.  For the past several years I had tested him repeatedly, found a few areas of concern and made those concerns evaporate through setting and reaching new goals.  Now the only goals that remained were those involved in the day to day challenges of actually living on his own, and I couldn’t deal with those until he was actually on his own.  The time for the transition to independence had arrived. Finding the right place was our next step.  It had to be perfect – and I do mean perfect.  It had to be safe and it had to be conducive to Matt’s special needs.  I found such a place, an apartment complex specifically for the elderly and disabled.  Nice little duplexes snuggled in a cul-de-sac, bordered by pine trees and maintained with high standards.  It was income subsidized and private.  Matt was put on the waiting list with a 4-6 month wait.  That gave us more time . . . time to get his furniture together and gather household items . . . time to save money for his bills . . . time to simply adjust to the idea that a big change was coming. As it turned out, I had 8 months to prepare myself and I honestly thought I was – until the call came. I was talking on the phone with Tom when my call-waiting beeped.  I thought it was the mechanic with news about my Jeep and asked Tom to hold a second while I took the call.  As soon as I heard her voice I knew who it was and I knew why she was calling.  Before her words could land on my ears my legs began to shake and tears began clouding my vision. “Hi Liz, this is Rhonda.  We have an apartment available for Matt.” She stated happily.  I somehow managed to make the appointment to sign the lease, thanked her and said good-bye, then clicked back over to Tom. “Tom?  Matt just got his apartment.” Then I started to really cry.  Tom was caught off guard.  He was silent for only a moment (from shock), and then also began to cry. It was finally here.  The day was set.  The transition to independence would begin in 10 days. All of a sudden I didn’t feel so ready anymore.  What if I was doing this too soon?  What if he needed more practice?  What if he couldn’t do it?  For the first time since Matt’s diagnosis I really doubted myself.  How will I be able to do this?  What if somebody hurt him?  What if ….. Oh, the enormity of the “what ifs”. I dried my face, took a breath in and out and told Matt about his apartment.  Matt, eager to move, ready to move and thrilled to move, danced around and thrust both fists toward the sky, “Yes!” he exclaimed over and over.  I smiled.  Matt’s moment of joy completely took center stage.  I knew deep down that of course he could do this, but it still took a few days for me to feel that same joy and confidence.  I had to wade through my grief and my fear first – grief in having this wonderful young man move away from me and fear of the “what if”. I summoned all my courage and got busy helping him to label his boxes, make a move-in schedule, and put a plan in place for how exactly to do it all that would give Matt a sense of empowerment and yet, not overwhelm him with the change. Thankfully, the apartment was ready before the date given and we were given access to it a week early – a blessing in disguise.  I took that chance to slowly move boxes over, slowly get him used to going over there and using his new key.  He was so excited about opening that door the first time that he fumbled the key a bit – but then stepped eagerly into his new apartment.  When we left that day we went immediately to get new keys made - one each for me, Tom and his big brother, Christopher.  As we walked out of the store I realized Matt was no longer smiling.  It took a bit of questioning before he revealed to me he was scared. It had finally hit him . . . he was moving away. Moving away for the first time, to a new place, a new area of town with new surroundings and feeling unsure of one’s self is a pretty natural response I think. All he needed was support, a schedule, and time . . . lots and lots of time.  Once Matt realized that he didn’t have to leave that very day his smile returned and he calmed down. He started marking the days on a calendar – the countdown to his first overnight in his new place. After a day at home on a normal schedule, Tom and Matt started carrying boxes over to his new apartment while I was at work.  Tom told me later that Matt looked totally dazed, not knowing what to do with room after room of boxes.  He told Matt not to worry - Momma had this.  He said Matt smiled immediately and calmed right down.  He asked for another day off - just a nice normal routine day - before packing and moving boxes again. He needed time to take it all in.  The change was hard and his day to day routines were being threatened.  We took a few days off. Tom had to work on the moving day for furniture and my Jeep was in the shop - I was more than stressed.  That’s when my step-daughter, Sarah, her husband Paul, and Christopher came to the rescue, bringing 2 trailers, a truck and plenty of muscle.  As I waited for their arrival that morning I had an epiphany.  I had been thinking about how huge this was, and how this day would be the biggest day of his life – Matt’s biggest challenge.  I said it out loud as I looked at my reflection in the bathroom mirror.  Then the thought occurred to me, that heck, it was the biggest challenge of my life too, but realized in a fraction of a second that that just wasn't true.  I corrected myself immediately. You see, 29 years ago this same week I held my newborn son Daniel in my arms and watched the heart monitor mark his last heart beat - THAT was the hardest day of my life.  My biggest challenge was to go on living without him.  I realized that Matt’s move, while extremely stressful for Matt, was not all that hard for me.  I had survived the death of a child and when I eventually, finally re-entered the world, I knew I was stronger. Matt was born the next year and I knew I could handle anything life handed out -   A N Y T H I N G – except the death of another child. That was why his autism never fazed me – after all, there are worse things.  That’s also why I was never in a hurry to complete a goal, never needed to make him fit a mold.  I knew, in that instant, staring in the mirror, that I could do this and if I remained strong, then Matt could do this.  He got his strength from me, and if I waivered even a little, his courage would fade. I reminded myself that this move was not about sadness in him leaving, it was about celebrating that he could leave. I knew in an instant that not only could I do this, I could do this with my hands tied behind my back and blindfolded.  My son needed me and I would walk through fire if that’s what it took to keep him focused and calm.  I looked back at my reflection in the bathroom mirror - "You got this, Liz" - and I did.  My grief at the idea of him leaving dissipated into thin air and I was once again myself…. The kids arrived shortly after and we started hauling; furniture that I had saved and collected over the years, more boxes, and even the cabinets that I remade into end-tables. His siblings were fast and efficient and in high spirits.  Before we knew it, they were gone and Matt and I were alone staring at an apartment of boxes and furniture and general chaos.  The rest of the day it was just him and me and an apartment in dire need of organization. "Matt, first we divide the boxes into their rooms", and immediately he began picking up boxes, reading the labels and taking them to the correct rooms.  Then we moved furniture to the locations of his choice. "Where do you want this, Matt, here or here?"  Giving him choices narrowed his focus and before you knew it all the furniture was in place, tables placed, book cases assembled, books on shelves and a kitchen with actual cookware, plates, cups, and silverware all neatly stored.  Matt was a part of every decision, allowing him total control on how his new place would look and feel.  After hours of organizing and assembling we needed a break – so we went grocery shopping to fill his fridge (which was pretty easy as he stills only eats 15 foods).  We also bought some cleaning supplies and when we had all the food stored we cleaned surfaces, drawers, shelves, TV, etc.  Then back to putting a bathroom together and finally the bed.  Matt assembled the bed by himself, just as he had the bookcase – all those Lego schematics he had read over the years had really paid off.  He read the schematic and piece by piece put his bed together without any help from me.  As I viewed the finished product I puffed up with enormous pride.  I helped him to make his bed and then moved on to hanging his curtains.  In hanging curtains I asked Matt to tell me when the rod was level – something he can eyeball perfectly. When we left for the day his apartment had really changed from one of complete chaos to a very nice Matt “man-cave”, completely decorated in his favorite Virginia Tech colors of orange and maroon.  As we drove out of town Matt told me he needed a few more days off.  We made plans for 2 days later, on Tuesday (his official house-warming day), to finish up. Matt needed time to re-boot.  It was all so much and even with going over only every other day the pace was too fast.  We needed to slow down, to a snail’s pace if possible, because after all, it was a huge deviation from his normal routine. Matt chose the schedule he needed, and I understood.  We were not in any hurry. When Tuesday morning arrived, Matt and I put the last of his beloved books in the car and went back inside to wait for Tom to get home.  Matt walked slowly to his old game-room and stood in the doorway and looked around.  It was now just an empty room with dust bunnies and a few odds and ends of things that would remain.  I put my arms around his shoulders, “It’s all going to be OK, Matt.” He turned and hugged me.  He was doing all he could to just keep focused on the task at hand, but he was nervous, his old routines were being altered one by one and the stress was almost overwhelming.   His most important routine occurs each night as the sun goes down   Matt needs his books around him at night – about 30 Manga books piled neatly on three sides of the bed, surrounding him and shielding him from the fear of the dark.  He could not sleep in his new place without that nightly ritual, so the last thing he took was his books.  He was ready. We met Christopher and his sweetheart, Jessie, in town and headed over to Matt’s place.  His brother programmed the TV and help Matt hang his posters.  We finished with small odds and ends as his other siblings arrived and marveled at the beautiful way Matt had decorated.  Matt opened more presents, cooked us dinner, and tried very hard to be a good host.  Round about 9pm he was winding down - his eyes had that half-open look and he was spending more time in his bedroom away from everyone.  That was Tom's cue to get going and all the kids took the hint and said their good-byes.  With everyone gone but Matt and I, we kicked back, put on a movie and just relaxed.  After the movie he went back to his bedroom again to lay out all his books.  I went and put on my pajamas and as I came out of the bathroom I saw him sitting on the edge of his bed flipping channels with the TV remote.  I couldn't help it.  I ran and jumped on his bed, landing behind him and put my arms around him and hugged him.  Matt instinctively relaxed backward into the embrace, put his arms over mine and we sat there like that and watched the last moments of Ghostbusters together.  His leaning into me touched my heart.  I could feel the love, the "thanks, mom" that I knew he couldn't say.  The feel of him in my arms was all I needed to know he was happy, proud of himself, and thankful not to be alone that first night. It was so very hard to let go. The stress of change has been too much and although we go over every day he can’t bring himself to stay there overnight more than once a week . . . but I expected that.  It’s just not that big of a deal how often he spends the night alone.  It’s a transition and this particular transition will be a slow one.  I’m still in awe that the transition has begun.  Of course it’s going to be a long road and sure, the pace will be slow, but the goal that has been set is a wonderful, almost inconceivable goal.  It’s not like dropping your kids off at college.  It’s not like the “moving away” that most people envision.  It’s a transition and as with all things autism, this transition will take time – lots of time. It doesn’t matter how fast he is acclimated to his new surroundings, it’s that he is attempting it at all that counts.  That’s the miracle.  That’s what touches my soul.  So it just doesn’t matter if he only stays one night a week, because in time he will move it to two, then to three, and one day, maybe six months from now, or maybe next year, Matt will live on his own completely . . . in a home of his very own.  Amazing.

  • At what point do you let go?

    I do a lot of speaking engagements and I have been asked many questions about how I raised my son, Matt.  Many want to know how I was able to get my moderate / severe autistic child from a dire prognosis of institutionalization to his current independence.  Within that category is onequestion in particular that I have thought deeply on: How does a parent “let-go” of their child as they become an adult, knowing they could very well struggle or even fail? My answer?  You don’t. You just don’t let go – ever.  Instead, we, as parents must step aside to make room for our child to spread those wings of independence, little by little, every day.  Parents are naturally a cautious lot, ready to swoop in and catch our children or pick them up and brush them off when they fall, but we never really “let go”.  We don’t walk away just because we are not holding their hand.  We stay within a safe distance so we can help if needed and give hugs when wanted.  Stepping back, giving room, watching proudly as the wings unfold, that's our job, that's our mission.  We know those wings will carry them from the nest and away from us one day …. But even if the distance is great we haven’t “let go”. I would advise getting rid of that phrase, "letting go".  It feels bad, as if we dropped the ball or worse yet, abandoned our child in need.  Try using “giving him wings” instead.  It’s a positive, powerful phrase which states you are directing your energy toward teaching the skills for living freely, independently, as every human has a right to do.  Of course, with autism this can be a slower process than with a neurotypical child. The process can be so slow as to not notice even though you have already started – but you have.  “Giving him wings” is all about the tiny steps that happen slowly over many years…. The first step is to build up the wings – put the skills in place that can be used throughout a child’s life.  Skills such as learning to communicate, feeding themselves, walking alone, dressing themselves, and washing their hands. The list is as long as childhood. Every so often we then test those wings, feather by feather. One of my first big steps as a mom of an autistic child was simply letting him play without a constant eye on where he was and what he was doing.  Giving him time to be himself.  I never let go – I just moved out of his direct line of sight and listened to him play from around the corner of the door.  As I assured myself he was OK alone, that distance got longer, until I was watching him ride his big-wheel down the hill in the yard from my kitchen window. These simple acts are our first steps as parents toward giving our child some room – some independence. Some are bigger steps than others - like the first time I let him go to the bathroom alone in a public place. I worried the entire time he was out of sight and behind that ominous “Men’s” room door.  I worried because I imagined what could happen to him in the blink of an eye.   As he grew older his wants changed, just as they do for every child, and as those new wants arrived I found a way to make them happen.  He wanted clothes that matched his peers, he wanted to choose his attire all by himself.  I showed him how to pick a set of clothes for the next day and set them out for the next morning.  He had no problem taking over what had been up to that point, my job. These small desires, like picking his own clothes, were the stirrings of dreams . . . dreams of independence.  Did I let go of him as he took on this new chore?  No… I never let go.  I just gave him a little more space to test those wings. I remember the first sleep-over. As a video game ninja, I knew Matt would spend his night playing against his friend in a marathon gaming extravaganza. It would be all about the battles on the screen, drinking pop and eating junk food – all very normal desires and activities for a 13 year old.  But I worried.  I worried about him being alone if his friend tired of the game and went to bed.  I wondered if he would exhibit anger if he lost a game. I never slept a wink.  Matt made it home the next morning and went straight to bed – turned out he played the video game all night, long after his friend fell asleep.  He was tired – but immensely happy.  All that worry I experienced was well worth the smile on my son’s face. Want to hear another?  How about the first time I let him go shopping on his own in a store and how my husband and I hid behind corners to spy on him to see what he would do to assure ourselves he would be OK.  Matt was in seventh heaven as he strode past the various toys because he knew he could stop and look at anything he wanted, he could even pick up any one of those toys for a closer look, and he could choose which aisle to browse. That type of freedom brings with it confidence and empowerment.  Put yourself in his shoes.  Wouldn’t it feel great? Then there’s that parental need to prevent the fall, and never let them fail.  Of course we don’t want to see them fail, but we need to let them try something new even when failure is possible. Push their abilities a bit, see what they can do and what they can learn…. Lots of trial and error.  I remember Matt getting his first ATM card and teaching him how to use it.  How to look at a price, add tax and estimate if he had enough money on his card. And then, *gasp* I let him lose with it… knowing there was that possibility that he could rack up hundreds of dollars in overdraft fees if he didn’t understand how to use it or comprehend his limit on the available finances.  And yes, he failed a few times, he did get charged a few overdraft fees, but it was all worth it because it also presented “a teaching moment”.  You don’t yell, don’t go off the deep end –nope.  You teach.  You teach how it happened, and why.  Decisions have consequences - and what better way to teach that simple fact? I remember the first time he was able to order his own chicken nuggets at McDonald’s and years later, his own pizza at Lil Caesars.  The joy of ordering for himself could be seen clearly on his face.  Only little kids have their mom’s do it for them.  Matt felt empowered – simply by stating, “Yes” when asked if he wanted fries with that. Big steps, such as learning to tell time on his own watch, use his own cell phone, and even having his own bedroom were all big deals –and steps toward flexing those wings a bit more.  Empowerment and sheer happiness – that’s what came with each new endeavor – and I never did “let go”.  I watched year after year as he tested those beautiful wings.  I watched those wings get stronger with each new skill set, and regardless of just how strong those wings were getting, I still never let go. When Matt was a teenager he got into water that was way above his head and he panicked to the point of near drowning.  Smacking his hands and screaming “Help?” Matt unbelievably held on until I could reach him. I came up behind him and slipped my arms around his chest and repeated in his ear over and over, “I won’t let go, Matt, I won’t let go”.  My legs soon tired of treading water with our combined weight and I wondered if we would make it, if we would survive …. The operative word here was “WE” because there was no way I was ever going to let go….. Ever…..regardless of what possible future lay ahead.  I was able to keep us going until help arrived (Was it adrenalin?  Was it an inner strength?).  As I laid down that night and repeatedly replayed the events over and over in my mind and shed the tears of relief, one thing was certain – I knew, without a doubt, I never would’ve let go…. Ever. Matt is living in his own apartment now.  He’s transitioning with 5 days at his place and 2 days at mine.  I talk to him twice a day, every day.  I keep my eyes open for potential problems and fears.  I watch and I listen.  I’m ready to be there if and when he needs me.  With him living 20 minutes away you may think it’s time for me to let go – but that’s never gonna happen.  Matt is using his wings now – he’s flying.  I get to witness my son soar to new heights and feel the wind of freedom, real freedom.  But I haven’t let go.  I am still teaching him as much as I can, still trying to keep him focused on even more skills, and I am there for him –at any time - just in case an occasional storm pops up to knock him down.  It’s a parent thing. It’s not an autism parent thing, just a parent thing.  My other children, after all, are grown, and using their wings too.  They soar to new heights and enjoy the freedom of adulthood. If they need me, I’ll be there, and they know this.  For Matt, building his wings up, trying them out and now using them to fly has been a longer road, a more focused road, and at times a more difficult one, but he can do it.  I know, because I gave him wings, taught him to fly, and now he is experiencing the freedom he only dreamed of as achild.  And I did it all without once ever letting go.

  • Parental Courage - Knowing when it is time to rock the boat

    Revelations come to us at various times while parenting.  We haven't a "how to" manual and thus as a parent of an autistic young man I realize that I have made my share of mistakes.  I also know that once I acknowledge those mistakes I can change -  when ever I need to.  Yes, I can learn from the past and move forward, but sometimes I need a bit of courage.  I need that bit of courage to change things up - try something new, be willing to rock the boat if needed.  I have a courageous son that shows me how to do it in everything he does.  I hope to live up to the high standard of being this young man's mom and so I gather my courage and prepare to change things up.  A particular revelation came to me as I contemplated the recent events of the past week.  A revelation that now pushes me to rock the boat. I recently had a friend visit me for a whole week. It was a great experience for me as I hadn't seen my friend in many, many years. We live almost 1000 miles apart and that means visits are a rarity. Although we talk often on the phone our last actual face-to-face visit was at least 7-10 years ago. I (and family) saw her last in Illinois. This time she came down to Virginia. Matt does not remember Carol, my friend of 42 years. He lost all his childhood memories as he went through puberty and doesn't remember playing at her house, going out to dinner, etc., so I talked with him about her impending visit several times to prepare him for what would be a very big change in his daily routine. They pulled in last Saturday and Matt welcomed them (Carol brought her friend Larry) without hesitation.....then proceeded to his game room where he stayed most of the time. Carol is an early-to-bed, early-to-rise kind of person and Matt a late-to-bed, late-to-rise kind of guy. Thus, with opposite schedules Matt was only subjected to the noise, commotion and general chaos of the house for about 5 hours a day. Still, I could tell those 5 little hours a day were pretty hard on him. Tough as it may have been, he never once complained. As usual I watched his mannerisms and gestures and body language and enough silent communication was provided to know the poor guy was feeling stressed. His one moment of excitement was when he was about to go for a drive in Larry's beautiful new copperhead pearl painted 2013 truck. After 10 minutes of riding in the back seat next to me I noticed Matt's face had dropped - he was disappointed by Larry's driving. It wasn't that Larry was a bad driver - he was a cautious driver; braking on every single curve, driving under the speed limit by 10-15 mph, constantly wondering aloud if we were lost (which Matt knew was just not true). But hey, this is Virginia and those of us who live here have been driving those curvy roads for years. Illinois is flat, roads are generally straight - big, big difference. But I could see Matt was getting quite frustrated.  The “joy ride” turned out to be just more stress. The week flew by - as vacations always do - and upon waking on Friday to find them gone, the house back to normal, and his old routine again made available to him, Matt arose jubilant. His step was light and quick, his smile radiant, his voice was resonating a happy tone. Life was again, good. There are 3 things I wish to share with you about this past week's experiences. The first is to again point out just how far he has come - allowing strangers to be around him without meltdown, no show of defiance or anger, no sour disposition. Only one rude comment (as Larry was driving and Matt's frustration peaked he stated - "Larry, you've got to start using your brains!" I took Matt's hand and quietly told him that comment was inappropriate. It wasn't something one said to a guest.  Matt has told this to me before and it's his way of saying, "idiot" - but not meant in a mean way.... All in all, I thought he did wonderfully finding his own way to deal with all the new environmental stressors. Understanding his stress level was high I didn't push him to interact very often. Then again, I didn't have to. My friend stepped into his life without prompting. She stepped into the world of his game room and initiated conversations. She spoke with him as a young man with wants, thoughts and feelings. Matt replied, interacted, and was polite. My friend made the first move - knowing that Matt can not initiate social interaction. She accepted him for who he is and went to him. I was impressed by her ability to get him to respond – just as natural as could be. And that brings me to the second thing I wanted to share with you - I had an epiphany while watching them interact. I know that no matter how old Matt gets he will ALWAYS have trouble interacting on a social level. Of course he will - Matt is moderate / severely autistic and that FACT will never change. What I find most amazing is my autistic son has more acceptance of other people's lack of communication skills than they have of his. It all came together as Matt and I were driving to town yesterday and Matt said, "Ahh, Larry is a terrible driver. He needed to use his brains. Just terrible- and he can't navigate very well." Out of the mouth of babes.... the truth as Matt saw it. Larry did have trouble driving. He's almost 70 years old and his vision isn't what it used to be. He was driving on curvy roads where he knew no landmarks, on unfamiliar mountains and down unfamiliar valleys.  I explained all this to Matt.  Matt nodded his head solemnly - he understood. Matt’s expression of  “Poor Larry” said it all. He had accepted Larry's disability (his inability to drive on curvy roads) almost immediately after the explanation. Don't you wish neurotypical people could manage the same thing of autism? Has it hit you yet? Do you see what is so amazing? Acceptance of a person with autism means accepting who they are - right here, right now. It means understanding there is stress, there is bewilderment, that everything you take for granted in your understanding of life is very frustrating and confusing for them. Acceptance means initiating the conversation. It means not overstepping their boundaries. It means having the GUTS to step out of YOUR own comfort zone to initiate a conversation and keep it going. Isn't it strange that Matt can accept people who do not act as he thinks they should, fairly easily and yet it's not like that in reverse. Normal people are not that accepting of those with autism. Too many people never make that communication attempt. Yes, that includes relatives and a few friends that are so uncomfortable with the thought of autism and so afraid of the communication differences that their only interaction with this wonderful young man is a "Hi Matt". I stopped trying to force them to accept my son long ago, but I haven't been able to give up on the idea of joint social interaction. As frustrating as it has been I still try to encourage an interaction...... but as the years go by I am realizing something profound- that it is very difficult for most people to initiate a conversation and keep it going if they don't get the feedback they want. They say their required "hi" and then ignore that he is even around. As if he did not exist - unless he approaches them (which he never will). It makes me want to scream: NEWS FLASH!!!! Matt is autistic! So I had an epiphany in realizing that the problem with the communication is not so much about my autistic son as it is about those that think they are "normal". Those that seem to have no problem speaking to other people  ..... until Matt is around. Why is it that these normally vivacious, outgoing, loving people can not communicate to save their lives when around my autistic son? Why can they not initiate a conversation? Why is Matt just seen but not heard? Is it really that hard? Which brings me to the third (and last) important item I wanted to share - my own guilt.  I have allowed the lack of interaction and the lack of communication – yes, it is my fault.  I have always allowed Matt to go off by himself while I interacted with family and friends.  I would do the socially acceptable dance of immersing in conversation while my son – my wonderful, accepting son, sat by himself content to play a game or watch TV.  I didn’t push.  I didn’t make a scene or stop the presses.  I just allowed the time to progress knowing full well that Matt was missing out.  Why?  Why do people conform to the socially acceptable behavior and sit quietly in the boat when every aspect of their being is screaming to not only rock that boat but tip it plum over?  It's about damn time I tipped the boat over. I am ashamed of myself for the last time.  I will no longer sit quietly while my son endures another get-together where he is left out.  Maybe I am getting stronger.  Maybe I have learned enough to know what is right and what is not.  Maybe I have finally found my own courage.  What ever it is I needed that kick in the pants.  I can not expect others to learn from me if I haven’t the courage to teach them.  I have made up my mind that where ever Matt goes you will find me also.  If he is relegated to watching TV or playing a video at another’s house then I will be there too.  I will initiate the conversation just like at home and I hope I will demonstrate to all those neurotypical people that I love so much but who are afraid of conversing with an autistic young man, just how it’s done. I am seeing – really seeing for the first time - that the social interaction and communication deficit is more of a disability for the "normal" person than it is for my son. If Matt can accept a person's differences and still attempt to communicate the best he can (mostly non-verbal) and still wish to be included then he should be allowed the same respect. Over the years I have found many people will say they "understand" autism but then never so much as attempt to interact or reach out. They are afraid.  It isn’t understanding – it's avoidance. So I have my work cut out for me as I use my new-found courage to rock the boat.  It seems to me that what’s missing in our attempts to teach social skills and communication to our autistic children we forget that we also need to teach these same skills to those who are neurotypical.  If I am going to be successful in gaining autism acceptance for my son then I will need to first teach those without autism HOW to communicate and I must do it by example. It's not a matter of them knowing about my son’s communication disability....after all, autism is just a word.  It's a matter of acceptance of autism.....of who he really is.  Matt is a real person with all the feelings, thoughts, ideas and dreams as any other human being.  It’s something I am afraid others will never realize if they are too uncomfortable to simply sit and talk with him. Desperate times call for desperate measures . . . . forget rocking the boat - it's time to tip the boat over.

  • When enough is enough! A simple rainy day pushes the limits of endurance.

    When enough is enough – a simple rainy day pushes the limits of endurance. It was a day to remember – the annual home game at Virginia Tech.  It was a close battle on the field, and an even bigger battle in the stands as my severe to moderate autistic son pushed the envelope of his own endurance. I watched as he fought against the sensory stimulation induced by the feel of rain and I watched helplessly as the stimulation tripped his overload switch.  For many autistic people too much sensory stimulation can overload their ability to process – things such as loud noises, strong smells, bright lights and certain textures - are just too much to bear. Sometimes, a parent can intervene and help them fight (by providing headphones,sunglasses, and gloves) and on occasion, when all else fails, we simply need to remove them from the stimulus altogether. On game day this year I watched as Matt fought an epic personal battle against the onslaught of environmental stimulation of epic proportions. His personal endurance was forced right up to the edge of the cliff and only his determination to endure kept him from going over that edge. It was a day which again reminded me just how much autism affects his everyday life and even simple pleasures. Matt is 27 years old and has loved Virginia Tech for at least 20 of those years.  He decorates his rooms in maroon and orange, wears a VT t-shirt, VT sandals and a VT hat almost daily, and even has a VT couch (orange and maroon with the VT emblem) in his game room.  My husband and I take him to1 home game every year and Matt’s excitement about the upcoming event permeates our home for months prior. For the big event this year he requested the tickets for the battle against Marshall in late September.  Matt has over 30 different t-shirts with Virginia Tech or Hokies emblem on them but for the epic battle this year he had to purchase another one – to wear only on game day.  For over a month he marked an X through each day on his calendar leading up to his big day and made sure to remind me just how many more days we had to wait.  A week before the scheduled day the forcast predicted rain for game day – it was my “heads-up” warning to be prepared. Game day arrived along with ominous grey clouds overhead.  We were not deterred from our mission though and proceeded to dress in the home-team colors, grab our rain gear and headed out the door - a few misting drops started to fall. It looked like the weather prediction may be correct - a chance of intermittent storms all day.  I focused on the "intermittent" part. We parked in our usual spot – a good distance from the stadium but one in which the walk took us past all the revered sights across campus.  This was our routine each year – and we couldn’t deviate from the routine - not without good cause.  A few sprinkles of rain were not considered "good cause".  As expected, Matt began snapping picture after picture as soon as his feet hit the pavement.  He loved taking pictures of his favorite buildings and pathways which marked the beauty of the VirginiaTech campus - his visual record of his favorite place in the whole world. The mist morphed to drizzle and we walked on. Matt wore a VT jacket with a hood as protection against the rain that fell, but his hood stayed down – his beloved VT hat protected his head.  I had made sure that morning that he was covered head to ankle (his toes were exposed due to his insistence on wearing his VT sandals) and was fairly confident he was well covered and protected against the elements, but just in case we brought along our rain gear (plastic capes).  Unfortunately, Matt hates wearing the rain capes - he hates the feel of plastic on his skin - and umbrellas are not allowed in the stadium.  His jacket would have to do.  At first, the light rain didn’t seem to bother him as he kept to his usual routine of snapping pictures while we walked across the campus, but as we neared the halfway point the rain started to come a bit faster and in response Matt put away his camera and quickened his pace. Once inside the stadium we shook off the dampness of our coats and purposefully took our time getting to our seats, staying under the overhang as long as possible before returning to the open air and the elements.  A small break in the clouds would have felt like heaven by then but instead as we walked up the stadium stairs toward our seats the sky grew darker and the rain continued to fall.  We laid a sweatshirt over the wet cement bench and sat down. I glanced at Matt – he seemed oblivious to the rain and instead seemed focused on where he was and the game before him – his smiled had not been dimmed by the dampness I knew he felt.  As I looked at my son I thought, "Good. You can do this Matt, I just know you can". The game began . . . and the rain fell harder. I put on my rain gear, Tom put on his rain gear and Matt pulled his hood over his hat.  I asked him to zip his jacket and he did so hurriedly – not because he was getting wet but because he wanted to keep his eyes on the field as he might miss something important – like what the Hokie Bird mascot was up to.  Each quarter came and went and the rain continued.  Minute after minute, hour after hour, it just kept raining.  It fell hard at times and less at others but the rain never let up. The game was neck and neck and Matt’s focus seemed to be on the field, the players, the score and keeping track of where the Hokie Bird was at all times - that was during the first half.  As for the weather, he appeared to be handling the rain fairly well. It wasn’t until the half-time break when I noticed the cracks in his armor.  When we were under the shelter and out of the rain Matt suddenly shook his hands violently in an “I can’t stand it!” motion.  Tom and I instinctively handed him some paper towels, which he took gratefully, and immediately used them to cover and wipe his hands over and over – as if he couldn’t dry his hands fast enough.  His spirits were still high, but not as high as they had been…. the feeling of being wet and damp was starting to crack his armor of determination - the rain was starting to get to him. We stood under the shelter of the breezeway and ate our lunch- hotdogs that were too over-cooked and way too over-priced.  Matt had looked forward to it all morning but now he seemed distant.  He ate his hotdog– but there was no enthusiasm in it – not like in previous years.  These were stadium hot dogs and therefore a special Hokie treat for him – but he ate it like it was a chore.    I knew he was uncomfortable, pushing his limits,and we delayed going back to our seats as long as we could.   “You ready to go back Matt?”  I asked. “Yes.” He replied – not excited, not happy, just resigned to go back to the uncomfortable exposure to the elements - something which must be endured in order to watch his favorite team play from the seats in his favorite stadium.  So back we went . . . back for the second half . . . and an even harder rain. We endured by focusing on the play by play on the field, by cheering, grunting at fumbles, and chanting the H-O-K-I-E at each touchdown.  The opposing team was a force to be reckoned with and the atmosphere stayed tense and exciting - the perfect football game.  Unfortunately, it was not the perfect weather.  Although my son appeared to be fully engaged in the events on the field I knew that deep down he was really fighting against the feel of the rain and fighting the urge to leave. After hours and hours of continual rain I knew his limits were being pushed.  The rain had by now seeped down onto his shirt, soaked his jeans, and was steadily dripping off his hood onto his face.  His feet must have been ice cold and through it all he appeared outwardly to be fine. In reality he was overloading and fighting to remain calm.  The game was almost over – he watched the clock…..could he make it?  Then in an upset the score tied and the game went into overtime. Matt had set a limit, had forced himself  to stay until the clock ran out on the forth quarter, and when the game went into overtime you could see he had not planned for that. He had taken all he could - almost five hours of it- and he just couldn’t  take anymore.  Enough was enough. “I need to go now.” He said urgently to Tom.  Tom looked at me in shock and whispered, “Matt said he needs to go!” “OK, then we go.”  I replied and started to grab my things. “But we’re tied and in overtime!” Tom said bewildered. “Yep, but if Matt said he needs to go now, then he must REALLY need to go.”  I said looking into Tom’s eyes and giving him the “think about it” look.  It clicked – I saw it on Tom’s face.  He understood we were on the brink of an emergency situation – Matt’s body was going into overload – too much rain, too much wet, too much cold, his body just couldn’t do it any longer.  We had to leave – right now!  As we stood to leave the sky darkened even more and the real storm moved in.  It poured buckets, drenching us in seconds.  Rain- hard, cold streams of rain now assaulted my son and there was absolutely nothing I could do to stop it.  Tom took off his rain cape in an attempt to protect Matt from the downpour, but Matt -on the edge of overload - could not accept it.  For Matt,  wearing rain  gear would just add insult to injury and he politely refused.  I took off my sweatshirt from underneath my rain cape and gave it to Matt to use as a makeshift umbrella, which he gladly took and put over his head.  As we walked we heard the play by play of the game continue on – VT was in their second overtime. It was a very, very long walk back to the car.  Every step was purposeful and not quite fast enough.  Up a hill, down a flight of stairs, round a bend and down another flight of stairs – the path back seemed never ending – and the rain came down even harder.  By the time we got to the car we were thoroughly drenched.  Matt had been quiet the whole way –never said a word, never took a picture and never smiled.  It was all he could do to just keep moving.  My son was withdrawing … shades of his earlier years of autism and a protective measure when things got to be too much - and this was one of those times.  I recognized it immediately even though he had not resorted to this behavior in over 15 years. Once we were inside the vehicle Tom turned on the heat and the radio – the announcer was overjoyed, exclaiming VT had won in their third overtime!  Matt smiled, “Yes!” he said softly.  His favorite team had won and although he was physically miserable, he was happy.  His withdrawal ended. I tried to keep him engaged while we rode home; trying my best to keep his mind on something, anything other than the cold and wet that enveloped his body.  An hour later we were home and got out of the car walking in the rain one last time as we headed for the door.  Matt went straight in, changed his clothes and lay down on his couch, covering himself with a blanket.  Minutes later he was asleep. He had done all he could do and it had worn him out, both physically and mentally.  Mother Nature had thrown all the rain it could at him and he had endured. This was a story of endurance, of a young man with autism who set his mind to taking whatever the weather handed out and pushing the limits of his own stamina.  Every atom of his being must have been screaming at him to leave- this was his much loved yearly game, one that went into 3 over-times and was truly a fingernail-biting showdown between equally matched titans. For Matt to have to leave before the end meant he had hit the wall.  He did what he could and left when enough was enough.  But don’t focus on the fact that he had to go before it was over . . . . No, that would be missing the point entirely.  Focus instead on the amount of time he stayed – the over four hours of unrelenting rain, and the amount of difficulty he must have endured. Over four hours of rain, rain and harder rain….. Four hours!  He met it head on with determination and quiet resolve and inner strength. The experience of that day highlights the reality of sensory processing difficulties and shows just how far my son has come over the years, because you see, Matt never out grew tactile sensitivity – he’s battled it all his life.  Its knowing this that begs the question, “How was he able to make it that long under those conditions?”  Matt has learned over the years to push himself in all things, to endure and not let the uncomfortable stimuli take control his body or his life. It’s not something I taught him….it’s something he has always had within him.  Pushing the envelope – that’s who he is, that's how he endures, and that’s how he manages to still have a life with simple pleasures regardless of the obstacles autism throws his way. I know my son is not alone.  Many autistic people fight against the environment every day and no one sees, no one knows, because on the outside they appear calm. They have learned how to endure the assaults on their senses that occur daily – something we can’t even imagine -and most, like my son, do it with dignity and quiet grace. Its experiences like these that always strike the heart of my very being.  Matt has endured more in his short life on a daily basis than most people will ever have to deal with in their entire lives . . . and that makes him the bravest soul I will ever know.

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