top of page

122 items found for ""

  • 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.

  • 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.

  • Autsim and Rumors of Violence

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

  • Matt Takes His Turn At Bat - a glimpse of the past brings hope to the future

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

  • In autism, there's no such thing as a simple shave and a haircut

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

  • In the battle against textures and tactile sensations, nothing beats desire.

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

  • Christmas at Grandma's House

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

  • For World Autism Awareness Day I am Sending You Hope

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

  • A party is not just a party... it's a social interaction to the extreme!

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

bottom of page