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  • Get the Book!

    Listening with the Heart - A guide to understanding non-verbal communication in the autistic child for parents, teachers, and professionals Special Hardcover Edition - only at Barnes and Noble Press! Order here! Free shipping. Click to purchase through Amazon! Reviews - 5.0 out of 5 STARS! The best part of life is what we share. How do we share if we can't communicate? If we are very, very, blessed we will have someone in our world who has the love, patience, and steadfast determination to listen very hard. So much so that they can actually decipher the unspoken, and in turn, teach us to really hear and be heard. Endless research and study done through the eyes and instincts of a scientist, teacher, author, and most importantly, a mother, have afforded us this invaluable insight into the skill of communication. Matt, a moderate to severely autistic and non-verbal child, had a lot to say. His mother teaches us how she learned to listen. "Listening with the Heart" is a combination of observational science, and storytelling, told by someone who has navigated the difficulties of raising a non-verbal autistic child for over 30 years. The author understands that real communication goes both ways - an understanding which allowed her to see the child, get to know the child - and not focus on just the autism. This highly engaging book not only discusses the 12 different ways in which an autistic, non-verbal individual communicates, but also shares many heart-warming stories from Liz Becker's personal experiences. Her success in communicating with her son, and him with her, has lead to her son living on his own - independently - which is a rare and amazing accomplishment for an individual with his degree of autism severity - and a wonderful tribute to the power of understanding non-verbal communication. - Gayle Johnson-Cartland, RRT. From the back cover "Listening with the Heart - A Guide for Understanding Non-verbal Communication in the Autistic Child, for both Parents and Professionals" "93/7 Rule: 93%of communication occurs through nonverbal behavior & tone; only 7% of communication takes place through the use of words. -John Stoker" Liz Becker found this to be true from Matt's early age diagnosis of moderate/severe mostly nonverbal regressive autism. In her book, "Listening with the Heart - A Guide for Understanding Non-verbal Communication in the Autistic Child, for Parents, Teachers, and Professionals",the most amazing line I held close to my heart is, "He spoke with his heart, I listened with mine - and amazingly, we heard each other". This extremely inspiring book, is written for parents and professionals. Her instinctive insights into nonverbal / minimally verbal children with nonverbal behaviors in Autism children and adults prove they do communicate, we just need to read, see and listen to their language. It is not a short cut to communicating- it is a lifelong journey. Matt has proven that with his Mother's perseverance in communicating with him, he can and has achieved more than many neurotypical children and adults. He is an independent and amazing young man, not because of his autism, but because his mother never gave up on learning to communicate his way and he was heard. Readers will find in this book many ways to communicate with nonverbal or minimally verbal autistic children as well as the ones not labeled autistic. Reading this book has made me more aware of the many ways we communicate with nonverbal language. I thank Liz Becker for giving me more insight into peripheral vision as a communicative activity - of which I have already started in my therapy sessions. This book is remarkable! You will find yourself in a whirlwind of proven ideas that work. She gives all professionals (teachers, therapists etc...) and parents a roadmap to communicating. I hope parents, teachers and therapists use this book as a resource to learn new ways to understand and communicate with nonverbal and minimally verbal Autistic children. She teaches readers that understanding the child's language and them any ways to communicate invites us all to see each and every Autistic child as a unique individual, and learn not to ever compare - or to give in - to social norms, but Always! Always! Keep investigating with our eyes wide open. - Deborah Simons-Johnson,MS, CCC-SLP, IBCCES Advanced Autistic Specialist Autism and the World According to Matt Click to Purchase - through Amazon Reviews: 5.0 out of 5 stars The World According to Matt Shines Light on Autism “They say you must walk a mile in another person’s shoes to really know them. Liz Becker is an Autism Mom who walks a marathon in her autistic son’s shoes and details it beautifully in her book Autism and The World According to Matt: A collection of 50 inspirational short stories on raising a moderate/severe mostly non-verbal autistic child from diagnosis to independence. This delightful collection of stories is a love letter from a mom who refuses to accept the 1990 view of autism that is imposed on her son, and instead embarks on a journey to uncover the beauty of who her son really is. The stories encompass everything from the trials and tribulations of potty training to helping Matt get his own apartment. Becker’s style of writing evokes an Earl Hamner simplicity, making you feel as though Walton’s mountain has visited the land of Autism. The result is lush and beautiful, you feel as though you are a part of the family that continually gathers ranks to protect Matt and help him safely make his way to independence. Readers will find themselves laughing along as both mother and son find the way to communicate in a world filled with complexities, half-truths and unrealistic expectations. They will cheer as Matt enjoys victories large and small and, like me, they will likely shed a tear when the road blocks seem just too tall to scale. Do yourself a favor and read this inspirational book from a Mom who helped to forge a path for Autism parents before Autism Speaks, before insurance reform and before there was any reason to hope.” - Shannon Penrod, Host, Autism-Live Book Reviews for Autism and the World According to Matt Inspiratonal, January 11, 2014 By Margaret ". . . . I am an Exceptional Student Education Specialist for a public school system. This family’s compelling journey will be a recommended read to my colleagues as an example of what a child with a moderate-severe autism disorder is truly capable of achieving, both in a supported home environment and in the general education setting." 5.0 out of 5 stars I cried. I laughed. I love this book . December 31, 2013 By Kay Schwink "I am the sibling of more than one autistic person. I, too, am "on the spectrum". It is rare to find someone who can so eloquently express what it IS to be autistic. I cannot pretend to know the struggle of Matt and of his mother, for my autism is "high-functioning". This book, however, made me FEEL as if I could understand and know what it means to love, or, be, or teach a "moderate/severe, mostly non-verbal" autistic person." 5.0 out of 5 stars I LOVE MATT'S WORLD December 31, 2013 By Esther Flores "This book shares all the raw emotions of both laughter and tears that go along with the Autism world". 5.0 out of 5 stars Honest humor January 4, 2014 By Marilyn Garnto ".... Her honesty with a perfect pitch of humor is a great read as we all struggle to understand and encourage children to find their happiness how ever that may look in their world". 5.0 out of 5 stars A Must Read January 1, 2014 By Bryan "A must read for teachers, parents, siblings or anyone who is interested in autism. ... She navigates and expands the boundaries of autism with humor and sometimes a few tears." 5.0 out of 5 stars Well done ! January 8, 2014 By S. Keller "Special education teachers and health professionals, especially, need to avail themselves of this resource that Liz and Matt have made available to all of us". 5.0 out of 5 stars The World According to Matt, a superb read, - Autism Daily Newscast February 7, 2014 "What instantly struck me while reading was the incredible bond between Matt and Liz and that most importantly she saw and still sees the world today through Matt's eyes"

  • Matt's Art

    Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt Artwork Photo Album of Artwork Matt drawing in his room - age 7 I knew Matt was artistic from early on. He loved looking at things from all perspectives and went through reams of paper per week. He would draw on the back of all of his homework papers and in class assignments.Drawing became his passion. Yet, he could not draw pictures of landscapes or people. Instead he focused on trains and power lines. I soon noticed that he had an interest in animation and explained to him that he would have to learn to draw other objects in order to animate an entire scene and he began to notice more of his world. He practiced drawing hands, faces, eyes, chairs, buildings and others. Drawing tablets became a "have to have" item and he collected different types of pencils, erasers, and straight edges. Take a look at his progression in the artwork photo album and read the blog on World According to Matt - Art Transforms a Mind. Matt's Artwork Matt is holding one of his drawings of the firemen at ground zero after 9/11 Architecture Free hand from memory (it took him less than 15 minutes to complete). Less than 5 minutes to draw (he was in the sun and "too hot" to draw). Animation Photography - an eye for patterns and light.

  • Non-verbal Communication

    Take a look at the 12 ways we send signals about who we are and how we feel. This list is my own personal observation list (copyright 2019) – not one provided by any one person or therapist. As you read through them note not just how many you already use to convey meaning, but also how many you use to extract meaning from another person. Touch (haptics) Facial expression Eye contact and gaze Gestures Paralinguistics Writing Art Music Body language Proxemics Personal Appearance Speech TOUCH Touch is vital – “touch is an important modality through which infants and mothers communicate; it is also a vital means through which infants self-regulate and explore their surroundings” Touch It decreases stress by down-regulating stress hormones. Without touch infants fail to thrive. 3 senses must be integrated correctly in order to perceive the world – •Tactile •Vestibular •proprioception Haptic – a combination of touch with awareness of body position. Tactile (touch) Receptors bring in information from the outside world – Skin – pain, temperature, itch, pressure, vibration, textures, etc When something isn't working as it should the child may show certain characteristic behaviors - Pulling away Avoiding textures Pain does not register correctly Withdrawal behaviors – a protective behavior from environmental overload . Vestibular Receptors in the inner ear detect rotational movement and changes in the head’s movement relative to gravity. Characteristic Behaviors - Twirling and spinning – retraining the brain to detect rotational movements. Lining up toys Spinning toys Proprioception Sense of the body’s position at any given time. Receptors found in joints, muscles and tendons, relays information about bending and stretching, and allows for fine motor movements. Body position is held subconsciously and adjusted as needed. Characteristic behaviors Holding a pencil – from a weak to a strong grasp, and from chaotic lines to smooth deliberate lines. May stand differently on occasion. Facial Expression The two types of expressions originate in different parts of the brain - . 1. Macroexpressions – voluntary 2. Microexpressions – involuntary, and thus harder to conceal Early in development the child puts the various expressions into only 2 different categories – approval or disapproval. ´Macroexpressions – appear obvious and involve the entire face. Being able to recognize obvious expressions (Happiness, sadness, anger) happens much sooner than complicated expressions (disgust, surprise, fear). ´Microexpressions – concealed emotions that show only in the blink of an eye. Eye Contact and Eye Gaze The degree of eye contact can signal comfort level. A lack of eye contact can suggest fear or apprehension. Retraining the visual integration centers in the brain after the onset of autism can be slow but the lack of eye contact doesn’t always last as learning is taking place. It’s not a problem with the eyes or eyesight, it’s more to limit the amount of visual stimuli streaming in all at once. Gestures Gestures are movements of the limbs or body in a specific way in order to express thought. Easier for the child to use their own forms of gestures but it's not easy for them to read them in another. Paralinguistics Non-verbal vocalizations and paralanguage. Basically, it’s not what you say, but how you say it is what really matters. Laughing or crying is tied to thoughts – its not “for no reason”, and research has shown that sounds emanating from others are perceived differently than those for neurotypical children. Researchers found that the participants were able to detect vocalizations of happiness more quickly than those conveying anger or sadness. Angry speech produced ongoing brain activity that lasts longer – the brain pays special attention to anger sounds. For the main care-giver, reading the child becomes almost intuitive. But remember that for the child, reading the message in return is much harder. Writing List- making is easier than understanding sentence structure and in repetition of list-making enhances memory consolidation. Making lists organizes thoughts. The brain section involved is the cerebellum, which is required for cognition (acquiring knowledge, understanding through thought, experience, and the senses). – The cerebellum puts it all together, connecting muscle movement with detailed thoughts and feelings. Research shows very few specialized neurons (Purkinje cells) but a greater neuro-inflammatory processes within the developing cerebellum of autistic children. Writing and art go hand in hand, as art provides a visual representation of the word. Involvement of this brain area is suggested for behaviors such as hand-flapping, spinning, and the need to line up toys. Art Art includes many forms of expression: drawing, painting, photography, even reading or making maps, schematics, and architecture. Art is a way to express what we see, what we feel and what we love. Much can be gained by examining art and using art as a way to communicate. Art adds depth to words that may be difficult to say verbally. It provides insight into what we think and dream about. Never take art for granted - it's so much more than just pictures. Music Music is a conveyor of non-verbal communication, just like art. It’s a conversation between the one playing the music, and the one listening to music. Again, both are expressing emotion. But music has something that art does not – actual words and language. Unlike spoken language, however, the words sung are not blocked in the speech processing area - language is more readily understood. According to Kimberly Sena Moore Ph.D., music therapy can be used, “ . . . to elicit spontaneous speech, to work on specific articulation patterns, and to increase their respiratory strength. Singing and speech utilize distinct and shared neural pathways, which can make singing a tremendously beneficial therapeutic option for strengthening neural connections needed for speech production .“ (Moore, 2013). Think of it this way - the information traveling along in side by side neural highways. The one for the spoken word is still under construction and there are detours and possibly dead-ends. But right next to it is the highway for the words being sung – and the entire highway from point A to point B is free and clear . . . all the way to the speech center. Words get in. Language is processed. We all receive song in basically the same way, autistic and neurotypical. Body Language Body language is an unconscious expression of emotion. Fidgeting, pacing, standing, or sitting can reveal anxiety or relaxation. It’s not just unconsciously used, but also unconsciously perceived by the person watching. It therefore plays a role in how we feel the other person is feeling – an unconscious communication for both parties; giver and receiver. Body language can reveal either positive or negative emotions. The hand movements and twirling, now referred to as stimming behaviors, are a body language expression of emotion – not self-stimulatory behaviors as most will tell you. Body language is an unconscious expression of emotion – and stimming is a unique form of body language. They're not trying to self-regulate, they're trying to express a feeling that they have no other way of expressing... So, while stimming is an all-encompassing term for the seemingly odd behaviors seen in early childhood autism, like the flapping of hands, it’s also highly inaccurate. Those odd behaviors are saying something... there's a reason for them and that reason can be found in the unconscious expression of emotion. Proxemics Proxemics is the distance a person puts between themselves and another – their physical proximity. We all have a personal space, but for an autistic child that distance is amplified. Invading one’s personal space results in an anxious, uncomfortable feeling. For Matt, it was a signal of fearfulness - distance is safety. A purposeful distance had to be maintained in order to remove himself from an environment that was too stressful, or away from a person he was fearful of. Proxemics was a conscious act – whereas body language is unconscious. The subtleties of body language provide clues to thoughts and feeling of the person being watched, but distance always meant the same thing – he either liked where he was, or he didn’t. Personal Appearance What a person wears, how they style their hair, growing a beard or shaving, wearing jewelry, choosing whether to have tattoos, deciding on clothing styles and colors, all are a part of our own personal appearance and depict the person we wish to display to the world. It’s that first impression we wish to project. Confidence is perceived by others by our attire. In addition to the professional attire that may be required, we still tend to express our individualism through the accessories – the colors we pick, our body art in the form of tattoos and jewelry. Our self-expression through our attire can take years to perfect. We don’t want to look like a simple droid for any specific company - we are more than that. So we personalize our attire to reflect the individual person that we are. As we grow older we evolve, and our own personal style evolves with us, reflecting our true self more and more. The autistic child's need to express individualism is like anyone else. Allow them to choices in attire, in decorations, in colors and accessories. The choices made reflect their individualism. Speech ´“. . . the presence of even one word, or some echolalic speech, appears to be a significant predictor for the acquisition of spoken language after five years of age.” (NIDCD, 2010). Echolalia - speech practice. The repeating back what has been said. For example, “How do you feel today Matt?” for which Matt would reply, “How do you feel today?” The non-verbal category encompasses a wide range of abilities – or disabilities. In its own way, non-verbal is similar in some aspects to the spectrum. There are lots of variations, from mute, to difficulties in producing speech, to being able to speak - but choosing not to. Maybe it’s too overwhelming. Maybe it’s confusing. ´For Matt, language use is more confusing and in many cases incomprehensible. It’s why he looks to me to clarify when someone is asking him certain questions. Matt prefers to avoid speech when possible, because most of the time how a person says something does not match their body language or facial expression. It causes uncertainty in how to reply. ´Matt is also non-verbal. It’s a unique and mysterious combination. This is why when I speak of Matt’s difficulty I simply use the phrase, “mostly non-verbal”, as it reflects an ability to speak, but for whatever the reason, does not wish to speak, or uses very little speech for communication. Outer monologue Self-talk, talking to one's self out loud. Many autistic individuals have this self-talk behavior and most are told to try and control it, as talking to oneself was thought once upon a time to be a sign of mental illness. It’s actually just the opposite. Self-talk – talking aloud to yourself – is actually beneficial. “. . . There’s a growing body of research to indicate that self-talk can help memory recall, confidence, focus and more” (Borzykowski, 2017). Self-talk – the outer monologue – is actually a sign of high cognitive functioning. “Our findings are just a small part of a much larger, ongoing stream of research on self-talk, which is proving to have far-reaching implications. “Not only does non-first-person self-talk help people perform better under stress and help them get control of their emotions, it also helps them reason more wisely.” (Borzykowski, 2017).

  • Photos

    Photo Gallery

  • About the author

    Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt About the author - Liz Becker Personal: I have 2 children and Tom has 2 children both now in their 30s. Matt is my youngest. Professional: Teacher - I teach biology, microbiology, and anatomy and physiology for Wytheville Community College and for Radford University. Clinical Scientist - I worked in the lab for over 16 years before going back to school. Research Scientist - spiders . . . yep, spiders. I researched how male funnel-web spiders subdued the female prior to mating and found it to be a pheromone. You can check out my research by clicking here. I worked toward my doctorate at Bowman Gray School of Medicine at Wake Forest University in the department of Neurobiology and Anatomy but found I just couldn't juggle the demands of 2 teenagers (one autistic) at home. Besides, my schedule really needed to be on par with Matt's.... so I backed up, and got my Master's (in Education) instead. I always thought I would go back and finish but something peculiar happened - I found I actually love teaching! No regrets.... Author - Autism and the World According to Matt 2-part series on Autism Daily Newscast The four-part series has begun on Autism Daily Newscast- and can I just say....... how AWESOME is this? I am having the time of my life with this book: the reviews, the invitations. I am overwhelmed and honored by all of it!!! Part I - AUTISM DAILY NEWSCAST Part II - AUTISM DAILY NEWSCAST From the local Newspaper: "Mom's autism blog reaches around the world" Source: via Liz on Pinterest Here's the link to the story in the local newspaper, Southwest Virginia Enterprise Radford University Interview This is my Alma mater - and so proud to have been asked to be interviewed for the RU Today online magazine, and featured in today’s edition of From the Dean’s Desk - the news and events section for the College of Science and Technology. Biology Alumna and Autism Advocate Shares Stories with the World My 15 minutes of fame as a scientist .... Here's my research on spiders - in case you are interested in that kind of thing.... Male induction of female quiescence/catalepsis during courtship in the spider, Agelenopsis aperta (Male induction of female quiescence/catalepsis during courtship in the spider, Agelenopsis aperta by E Becker, S Riechert, F Singer. Behaviour (2005. Volume: 142, Issue: 1, Pages: 57-70 ISSN: 00057959). Contact Me Contact me by email - click here.

  • Matt's Awards

    Graduating with Honors Matt with one of his friends at graduation in 2005 - note the cool honor cords around his neck! Simple Awards Start the Ball Rolling Towards Big Achievements! 1992(age 6) T-Ball; Sheffey Dodgers 1993(age 7) Job Well Done! Award T-Ball; Sheffey Dodgers- District Champions 1994(age 8) A Super Good Student 1996 (age 10) Certificate of Recognition - 4-H Share the Fun Presentations Dramatic Reading Certificate of Achievement - Second Annual Young Writers and Illustrators Awards Competition Special Olympics 1997(age 11) Special Olympics First Place: Running Long Jump - 2.0 feet First Place: Softball throw - 20.04 ft First Place: 100 yard dash - 17.10 sec. Academic Excellence Awards Reading English Spelling Math Science Health Social Studies 1998 (age 12) 4-H Public Speaking DARE - Commonwealth of Virginia: commitment to say no to drugs Special Olympics First Place: Running Long Jump First Place: Softball throw - 21.5 ft First Place: 100 yard dash Odessey of the Mind competition Academic Excellence Awards English Spelling Math Science Health Social Studies Arbor Day National Poster Contest - winner for Sheffey School - went to state competition 1999 (age 13) Special Olympics First Place: Running Long Jump - 1.96 m First Place: Softball throw - 22 ft First Place: 100 yard dash - 21.28 sec. Odessey of the Mind competition School Science Fair - Grand Prize (Greenhouse Effect on Global Warming) Wythe County Science Fair - Regionals: Honorable Mention - Biology Academic Excellence Awards Reading English Spelling Math Writing Science Health Social Studies International Food Fair - 2nd place Outstanding Attendance 2000 (age 14) Special Olympics First Place: Running Long Jump - 2.61 m First Place: Softball throw - 29.6 ft First Place: 100 yard dash - 17 sec. Odessey of the Mind - competition (2nd place) School Science Fair - Grand Prize Academic Excellence Awards Reading English Spelling Math Writing Science Health Civics President's Education Award -(signed by Bill Clinton):Outstanding Educational Improvement 2001 (age 15) Art Contest - Salem Fair; First Place (sketch of the national capital building in DC) 2002 (age 16) Who's Who Among American High School Students Science Fair - First Place Acedemic Letter Art I Letter Academic Letter - Earth Science 2003 (age 17) Academic Letter - Algebra 1-part 2 Who's Who Among American High School Students Citizenship Award - FCHS Outstanding Performance for dissecting a pig in biology ;) National Honor Society- Induction Matt with his friends on graduation day! 2004 (age 18) National Honor Society Who's Who Among American High School Students Delegate Carico Academic Award Outstanding Student - Geometry Part 1 2005 (age 19) National Honor Society Who's Who Among American High School Students Top 10% (Student rank - #4) Senior Academic Letter GPA - 3.812!!!! Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt

  • Home

    Global Visitors Special Hardcover Edition! Barnes and Noble Press - click here Click to order - NEW BOOK! Listening With the Heart Autism and the World According to Matt About the Author Liz Becker, M. S., Ed., is a published research scientist, college instructor, published 5-Star Author, and mother of two. Her youngest son Matt, was diagnosed with severe, classic regressive autism n 1988 at the age of two. Liz has been a pioneer of the autism community ever since, refusing to accept the dogma of the time that autistic children needed to be institutionalized. Instead, Liz found a way to communicate with her non-verbal son using her instincts as a scientist and as a mother. Her insights into non-verbal communication are revealed in her new book, "Listening with the Heart". "Listening with the Heart" , is the first book to examine the non-verbal forms of communication as strategies for understanding the non-verbal autistic child and provide strategies for 2 way communication without relying solely on speech. Her first book, " Autism and the World According to Matt " revealed the challenges, joys, heartaches and successes on raising a child on the severe end of the spectrum at a time before anyone even knew there was a spectrum. Matt is now living independently - a feat just as rare as his condition once was, even though he is still moderate / severe autistic and mostly non-verbal. This website, " World According to Matt " has been helping people for almost a decade and currently reaches 127 countries and 7 million people. She has been a featured guest on Autism Live, Everyday Autism Miracles, The Autism Channel, The Hour of Joy Show, and has articles and interviews in Autism Daily Newscast, Autism Parenting Magazine, Roanoke Times, and others.She is a frequent short-story contributor to the Autism Support Network and was one of the first authors to be highlighted as an Autism Light (#13 out of now over 400 people). Liz lives in Virginia with her German Shepherd, Zoe and her 2 Conures, Max and Doc. She has two grown sons; Christopher and Matt. + SHARE Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt Liz Becker 5-Star Autism Author Interview with SJ Childs April 2022 This is what hope looks like - A New Adventure, A new Memory – and a Bonus I’m all about going on adventures and Matt is so easy to please when it comes to taking part in one. As a photographer, Matt is thrilled to see new things and record it all in photographs and video. On our last trip to Grayson Highlands State Park we were sitting on the giant outcrop of rocks in Massie Gap and looking toward the mountain ridges of North Carolina and the large peak within the park where the Visitor’s Center and Gift Shop are located, when Matt and I saw a person standing on the tallest peak of rock – we both pointed at the same time. “Oh my gosh, Matt! Someone is standing up there! Does that mean there’s a path?” I asked. Matt replied, “Yes! Twin Pinnacles!” We decided right there and then that we must do that hike, and made plans to hit it before the fall was over. Yesterday was that day. I picked Matt up around 2pm. He was wearing what I asked – tennis shoes. Matt wears sandals almost all year and for every hike he is in those sandals, but we had researched a bit about the Pinnacles and it was designated as a hard trail – rocks… lots and lots of rocks. Matt needed footwear that gripped the ground and I talked to him about this. He would allow that change because he was determined to complete the trail – hard or not – and he trusted my judgement on the need for good footwear. Our drive was a happy one – for a while. Matt was so excited he was actually dancing in the passenger seat to the music on the radio. Then we hit a snag – road construction. We slowed to a crawl… and time was ticking by. Matt was restless. I had him google-map our destination so he could keep track of our progress and get his mind off our slow progress. We finally made our exit 45 minutes later and Matt sighed audibly, shifted in his seat and sat up straight, eager to be once again on our way to our new adventure. The rest of the trip Matt was counting down miles and telling me where to turn, and with each exclamation of our progress his excitement increased. We made it! We parked close to the Visitor’s Center and went in to grab a water for each of us and a map of the trail. As we headed out to the Twin Pinnacles trail, Matt’s outer monologue was in full force – “We made it, OK, now we walk this way and head left… it’s going to be hard, but I have my shoes…” The first part of the trail was flat and wonderfully level ground, the path was covered in Aspen leaves. Our footfalls were soft and light. As we came to the first sign I knew Matt would need a picture and stepped back so he could frame it just so…. And then as we walked on he talked about the information he had just read, and I was enjoying his outer monologue about the birds and plants and possible bears that we could come across… “Be bear aware, right, be aware . . .” The trail split – it’s a loop and we could choose to go either right of left. To the left was a sign pointing to Little Pinnacle – so we went left. The trail became a series of stepping rocks going uphill and I was glad I had my walking stick as my knees hate doing steps. My knees are those of someone my age – stage 3 is what my orthopedist had called them while reminding me that stage 4 was knee replacement time. For the most part I baby my knees, wanting to put that inevitable surgery off as long as I can, but I have to hike too – as long as I possibly can. Matt knows this about my knees, and my back. He took the lead straight off and walked purposefully slower, knowing his mom was slow and old. “I’m not that old, Matt, walk faster please…” I would say and he would speed up for a while. He’s very protective and couldn’t help but worry about me. This concern was really apparent each time a large set of stones were ahead in the path. Once he spotted the rocks he would instinctively reach back his hand to lead me through the dangers. This protective behavior is a left-over from when I had back surgery and needed help moving during that first year of recovery. Matt has since been very concerned about just how much I can do and how far I can go. He does this concerned behavior subtly, never making a scene or pushing me to careful. He just stretches back his hand just in case I feel the need to be steadied . . . “I’m good, Matt – no problems yet!” I said happily, and Matt dropped his arm back to his side and resumed taking photos every 10 feet to record his journey and talking to himself about what he saw and where he was going. I listened to him chat away and was in doing so, knew just how important this particular adventure was for him. After walking a while – and by the way, it was a beautiful walk under the swaying Aspens, with leaves falling gently around us in the cool crisp air – we came upon a spur to the left – the Little Pinnacle. “Look! Little Pinnacle, Matt!” I exclaimed and we headed up the boulders slowly toward a clearing. The clearing was caused by the outcrop of giant stone, and immediately we felt the full force of the wind. This was not a gentle breeze. This was one of those winds that could knock you off your feet if you’re not careful – and I could see it on Matt’s face that he was worried about the wind . . it was a long way down. I put down my walking stick and grabbed the rock with both hands, keeping low and going slowly and purposefully upward to a flattened area where I could sit and take in the breath-taking view. I knew Matt was watching me… Matt put down his walking stick, and talked himself into the climb. “Ok, use both hands, stay low, be careful, and hold on to your butt!” Matt moved slowly upward and made it to the flat area of rock. I chose that spot because a large rock lay behind us like the back of a car seat, and enough to protect him from the wind and any possibility of falling. I leaned against the back rock and showed Matt that the wind couldn’t blow me away . . . he steadied himself and then leaned back releasing a sigh of relief. We both marveled at the 360 degree view from the top – absolutely breathtaking. Matt relaxed . . . we were safe. I knew exactly the moment he felt safe as he declared “Time to take even more photos!” I took several photos myself – such an amazing view - then put my phone away and watched my son. He was ecstatic to be in this place, at this moment in time, on this beautiful blue sky, fall day, and he was recording the entire 360 view. Watching him, I knew this would be a wonderful memory for him. I knew by the smile on his face, the intermittent “Wow” every few seconds as he gazed upon the world beneath us. I knew, because I could see the confidence and courage on his face building, standing on this outcrop of rock – the Little Pinnacle - in the fierce wind . . . oh yes, this would be a day to remember. When we were ready, Matt climbed down a few steps first, then he reached up his hand to assist me in the climb down. “I’m still good, Matt, thanks” I said, and Matt watched me a bit longer to be sure I would be fine, then suddenly turned away – something had caught his eye. Matt saw an eagle gliding high above us on the thermals – he absolutely had to take a photo of that! He no longer worried about mom, and walked away to get a better shot. I smiled. Eagles floating on thermals were one of my favorite things too – I completely understood the attraction. I did get down from the rocks just fine – I was slow, but fine – but because I took too long to get on flat ground I wasn’t able to get a picture of the eagle. Fortunately, Matt was more than happy to show me the many photos he took, and they were all very beautiful and I told him so…. He smiled. I do believe I know what I’m getting for Xmas from Matt . . . a beautiful eagle photograph. The next part of our journey was a series of uphill and downhill and uphill again on rock stepping stones and I was wearing down. A big shout-out to the Boy Scouts and those rest shelters they built along the path. I used every one of them. I can only be on my feet for 45 minutes to an hour at a time before my back locks up and I freeze in place – being able to sit was everything to me, and there were no fallen logs or larger rocks to sit on, so those rest spots meant everything to me. They allowed me to continue going after relaxing my back for a while. During my rests, Matt would look at me concerned, and I would assure him I was doing well and would be up and moving again shortly. He would then take those moments to, of course, take even more photos, but also to look around to make sure no bears would join us. Be bear aware. Back on the trail we soon came across the spur for Big Pinnacle. We started up and then one of my steps came down strangely and I let out a yell. Damn… hurt my ankle. I looked at Matt, the concern building on his face. “I think that was a sign for me to take it easy for a bit – that means you do this climb on your own . . . “, I said looking at Matt. Matt’s face lit up – I could see his YES!! Just under the smile. He wanted this, oh man, did he want this – a solo hike on the rocks of the hardest peak. “OK!” he replied, and immediately turned away and headed up those steep rocks to Big Pinnacle. I watched as he walked into the glare of the sunlight shining between the tree limbs… I lost sight of him in that glare. As I sat there rubbing my ankle, I had a few moments of the “what if” – normal protective-mom stuff. “What if he falls?”, “what if he gets hurt?”, “what if he meets a bear?” . . . I seriously hate the intrusions of the what-ifs. I consciously shut that crap down, and focused instead on listening, trying to hear the “Wow!” I knew he would exclaim from the top. Sure enough, I did hear the “Wow!” and I knew this was more than just viewing the world from on high – this was a really big deal for him personally. He hiked the hardest part of the trail alone, without his mom, as an independent man. My heart was about to burst from the simple knowledge that my son was at the top of the world, feeling whole and strong, and worthy as a human being. He was demonstrating to no one but himself his own courage and determination. I couldn’t see it – but I could feel it – the enormity of it - just as strongly as if I had been standing right next to him to witness it. When he came down he was beaming, and that sunlight behind him enhanced it and made him look as if he had been spiritually blessed. He sat down beside me and showed me his pictures from the top – marvelous, wow-worthy pictures. He had done what he came to do – now it was time to complete the loop and go back to the Visitor’s Center. He had been successful and was now walking on air. The rest of the hike was more difficult – lots of uphill climbs that were steeper and I decided the next time we did this I would go to the halfway point and then return the way I came – but I did make it, and more importantly, so did Matt. He did exactly what he set out to do – climb both pinnacle peaks and complete the loop of 2 miles of mostly difficult terrain. As we were driving through the park toward the exit, I asked him if he wanted me to pull over at the park lookout to get any more last minute photos and was met with a resounding, “YES!” I pulled into the parking lot and as Matt jumped out I found I was definitely moving slower… everything hurt. I walked to the front of the Jeep and sat down on the bumper. My legs felt wobbly and my back was screaming at me. My right ankle was sore, as were both my knees. I looked up. There was Matt – pointing his camera directly at me. Let me say that again . . . Matt was pointing his camera at ME!. Matt was taking photos of ME! OMG! Matt never takes photos of people – unless prodded to do so. This was unexpected and unsolicited. This was new. This was my bonus to the day. I felt like the most special person in the history of the world! My son wanted pictures of ME!! So that’s my story. It was a new adventure and one that brought wonderful moments that I will never forget. I made memories for myself, and I provided Matt with new memories too. And, to top it all off, I got a bonus – Matt took pictures of another human being – and I feel so privileged that it was me he chose to be his first. It’s a bonus to this entire year. I have spent this year trying to give my son the new experiences he craves (while staying away from populated areas), and I’m doing what I can on a limited income. I was afraid I would not be able to give him much this year, as I’m stretched pretty tight financially and it’s hard to find activities that we can do without being around others. But, as it turns out, hiking is enough. Matt continues to blossom and keep me amazed. He continues to remind me that he is a grown man and can do so very much on his own. He also reminds me that he still enjoys his time with me – that he cares about me and that he loves me. This day was another special day for us both. For me, it was also one that reinforced how strong and independent he has become, and what wonderfully caring person he is. It’s hard sometimes, for me to reconcile what I see before me now to the memory of his doctors advising me to institutionalize him at the age of 2 years old. His diagnosis was so very dire . . . and there were no therapies, no strategies, and no medications to help him. All I had in those early days was hope. This wonderful adventure we had today? This is what hope does . . . this is what hope looks like. It's the result of all that hope . . . .the result of never giving up. This is Matt NEW BOOK - Listening with the Heart - A Guide to Understanding non-verbal communication in the autistic child, for parents, teachers and professional. I am sitting here holding my book... thumbing through the pages. I am quite aware of it's heft in my hands, and I am in awe that it is real. The cover design was all me - a bit artsy as it is just a bit blurry - a visual representation of how we tend to have trouble really seeing our children under the autism behaviors. Not sure if anyone would even understand that just glancing at the photo. The inside is completely organized the way I wanted it to look - breaking sections into small digestible pieces that can be read and set aside easily when life interrupts, because life always interrupts . . . The foreword brings me to tears every time I read it - my oldest son wrote it about his brother. It grabs my heart every time. I look at the reviews and I am in awe of each one - 5 stars - their kindness and their candor means so very much to me. I feel blessed. Even the reference pages make me proud - so many scientific studies that highlight each point. The scientist in me would have it no other way. Then there's the real-life stories... so many stories. Stories that reveal how I found the clues I did - the clues left for me by my youngest son as he attempted to train me to communicate with him his way. A journey toward understanding. Discoveries and subtle details. A winding path. A road less traveled. Hope. I hold the book and I can barely believe it. No one else has ever written about the non-verbal communications provided by the autistic child in their attempt to "speak" to those they love. It's the first book of it's kind - and I feel honored to have written it (does that make sense?) This is a memory I will always hold onto... the fulfilling of a dream . . . So many of my dreams were never realized - life happened, you see. But this one, this dream I had for myself, this one came to fruition - and I am allowing myself the time to just "feel" it all..... Waxing poetic... it's what I do... I write and I know things... :) Interview with Shannon Penrod of Autism-Live Non-verbal Communication He spoke with his heart, I listened with mine – And amazingly, we heard each other. The 12 ways in which we communicate - Touch Facial Expressions Eye contact and Eye Gaze Gestures Paralinguistics Writing Art Music Body Language Proxemics Personal Appearance Speech Communication and social interaction requires information to go in both directions and when learning to communicate with an autistic child – an individual with a communication disorder – it is imperative to use all forms of communication and not focus on simply one or two. Keep in mind that attempting to communicate by primarily focusing on speech may actually work against overall communication efforts. Autism is a communication disorder and the hardest part for many is language – including speech. Someone who has difficulty understanding speech can become so frustrated trying to understand what is being requested of them that they may choose to withdraw from the interaction completely, preventing any new learning from taking place. In contrast, using all the other forms of communication in the toolbox in addition to speech, can ensure that even in times of high frustration, stress, or overwhelming fear, that there will still be plenty of ways to effectively communicate compassion, safety, patience, and understanding, allowing the overall goal - the exchange of ideas - to still be successful. Learn more - AWARENESS is EVERYTHING There may be a day when Matt will not get a photo with the Hokie Bird …. But it will not be this day. That was my train of thought as we prepared to go to the 2018 Spring Game at Virginia Tech. Last year we didn’t get that desired photo – the Bird never got close enough and we could not get through the crowd when he was. Matt had several photos, some taken at a distance and a few close-ups, but it wasn’t a “win” if he didn’t get a hug. Now, a year later, Matt was overdue for that Hokie Bird hug. His resolve was as great as my own when we arrived on the campus. Both Matt and I knew today was most certainly going to be the day. It was a beautiful day – warm and breezy. Matt was in high spirits. It was looking like the perfect day – and in all respects so far, it was. As with every “big day”, Matt had not slept the night before. Too much excitement, too many hopes and dreams on the line to rest. He was running on nervous energy – focused liked a laser on hunting that Bird. We entered the South gate and walked around and did the tunnel lap. As we walked I had Matt practice, “Hi Hokie Bird! Can I get a picture?” Matt practiced the sentence several times until he felt sure he could do it. If he found the Hokie Bird and I wasn’t with him, he needed to be able to speak the words – or be ignored like he was at the Duke game. At that game, Matt simply could not say the words and I was much too far back to help him… he never got his hug. We had time to kill and so we went window shopping at the Hokie Store, checked out the views from various openings and took pictures – lots and lots of pictures. No matter where we were or what activity we were doing, I knew Matt was on the lookout for that elusive rare creature. We all looked, but none of us spotted him. It was time to find our seats. We found some great seats on the South end in the end-zone – Matt is very fond of the end zones more than the general home team stands. In his mind, the Hokie Bird loves the south end zone. That’s because there were several fall games over the years where we witnessed the bird hanging out and crowd surfing at exactly that location – and now, this is where we go in hopes of not just watching, but participating in the fun. Unfortunately, the last few years the Hokie Bird had avoided the southern end-zone at the Spring Game. Would he again this year? Tom had come with us to help us in our quest – and that meant there were 3 sets of eyes straining in search of that maroon mascot. It was getting close to game time when Matt yelled out, “I see him!” pointing toward the opposite end zone. There, just outside the tunnel, was the Hokie Bird, doing his happy strut in front of the general seating. We watched as he waved and strutted and did a cartwheel for the kids in the far end of the stands… but he wasn’t coming our way – nope - He seemed to just be focused on that one area – where loads of children had gathered to wave and watch. Oh Hokie Bird, please come this way…. But no. The bird was pretty much going to stay right where he was. Will he get a chance to hug the bird? Will the bird come this way? Will he disappear like last year before the end of the game, giving us no way to catch him? I had promised Matt we would get that bird this year . . . I had PROMISED! I jumped to my feet and shouted, “Come-on Matt!” before I even realized what I was doing. I headed down the steps and called behind me, “Hurry!” Matt popped up and hurried to catch up. This momma was on a mission, and Matt knew exactly what that mission was and where I was headed. But the way was blocked… only those with special passes were allowed on the field before the game. Matt was hesitant – because he knew his momma did not belong there. We both made it down the steps, but as I went onto the field, Matt stayed behind the gate – hesitant and unsure. The closest official gave me “the look” – that stone face, immoveable, professional guard type look that makes even the biggest fans quake. He stared me down and said, “Do you have credentials to be on the field?” “No sir, I do not.” I admitted, “but we need to get a picture of the Hokie Bird with this young man” and then I leaned in and begged. “This man is autistic and that Hokie Bird means everything to him. I just need a picture and we will come right back”. I’m a mom… a mom of an autistic adult who loves that bird… I am not above begging. As I spoke to the official, Matt stayed behind the gate watching. There he waited apprehensively – He looked absolutely terrified, about to jump out of his skin. The look on the official’s face was doing its job. The official looked at Matt and then at me, “You do not have the credentials to be on this field” then paused a second and said, “so come right back”. OMG!!! That’s a yes! I turned and looked at Matt, “Come on Matt, hurry!!” Matt flew through the gate and rushed onto the field. I told him we could go after the bird, but we had to hurry. Matt stayed right with me as we sprinted down the sideline toward our target. The Hokie Bird had no idea of course, that he was being stalked, and he turned to head back toward the tunnel. No Hokie Bird, no! Instead of the tunnel, the bird headed under the North stands and when we were within about 15 feet from him I yelled, “HOKIE BIRD!!” The Hokie Bird abruptly turned and stopped. I was about 5 feet in front of Matt and had just a split second to explain to the mascot that we needed this – that Matt needed this photo. As I finished my sentence, Matt arrived - and the bird leaned into Matt and hugged him. A hug. A Hokie Bird hug. I took their picture, then I used Matt’s camera and took a few more for Matt. Matt was smiling greatly – he had no words… They hugged again and we had to leave. “Matt, I promised the guard that we would come right back – I promised…” Matt understood, and a way we flew back down the sidelines and back to the south end. As we approached the guard he asked, “Did you get a picture?” “Oh yes!!” I exclaimed as I whipped out my phone and found the few I had taken. I showed them to him. “You did a good thing today“, I said to the official, “you did a really great thing today….” The official smiled just for a second then immediately returned to the stone face professional – trying to hide his joy. Matt and I returned to the stands, out of breath but elated. My knees screamed at me as I reclimbed the steps to my seat. When I finally got back to my seat Tom showed me the video of us sprinting down the sidelines . . . wow – we were really flying. Matt spent the rest of the game relaxed and enjoying the plays on the field and the antics of the bird on the sidelines. He wasn’t anxious. He was simply relaxed and happy. All stress had been removed. Oh wait, but there’s more…. Toward the end of the 4th quarter guess who came down to the south end zone? Yes! “Matt! Go!” I shouted and Matt jumped up and headed down the stairs. Tom jumped up and headed down with him. My knees said – ‘no… sit woman’. I watched as Matt inched closer and closer through the crowd that had quickly gathered to see the bird. I stood up, barely able to see the top of Matt’s head – but enough to know the Hokie Bird was right there with him. He was there quite a while, not wanting to leave I bet, and I wondered, did Matt say the words? Was he able to get them out? “Hi Hokie Bird! Can I get a picture?” You can do this Matt, I cheered silently. Shortly afterward Matt and Tom arrived back to their seats, both were smiling ear to ear. Their body language said it all. But what I wanted to know - and I was about ready to jump out of my skin – was Matt able to say the words? I asked Tom. “Yes!! He stuttered just for a second and then said, ‘Hi Hokie Bird! Can I get a picture?’ He did it! The Hokie Bird stopped and gave Matt another hug and a high-five”. Matt proudly showed me his pictures – he was smiling greatly - and giggled - but he couldn’t speak . . . not yet. A little while later he told me all about it. I can’t stress enough how massive this all was. As a child Matt was fixated on Thomas the Tank. As an adult it’s the Hokie Bird who has his heart. It is not just a hug, not just a high-five, and not just one sentence spoken under stress. Each has an underlying emotion. Each was huge!! It didn’t matter that he was 32 years old or that the Hokie Bird is just a mascot. To Matt, that Bird is EVERYTHING. Not only was he overjoyed by the pictures and the touch (hugs and high-fives), but Matt was proud of himself for being able to SPEAK to his most treasured “friend”. And just so we are clear, that official on the field that allowed us to go after that bird, did so because AWARENESS works… I saw it on his face. That official understood the second I said “autism” that this was not just some fan wanting a photo-op. He got it… he bent the rules to accommodate my son’s needs. Just as the Hokie Bird is everything to Matt – awareness is everything to me. It allows me to do my job the best way I can. I am Matt’s ‘Bringer of Dreams’… and today, because of awareness, it was mission accomplished. AUTISM LIGHT #13 Honored on August 11, 2011". There are over 250 Autism Lights now and the number continues to grow. It's an honor to be a part of this autism awareness campaign. Thank you, Alan! There are 455 Autism Lights currently.... a wonderful tribute page. Check out AUTISM LIGHTS Liz Becker meets Temple Grandin! The Joy Sutton Show - The Power of a Mother's Love. Part 1: Interview with just me. Part 2: Interview with both Matt and me. Writer at Large for Autism Support Network! Autism Act of Love Challenge Matt and I took the challenge. I went first so he knew what to do. He didn't like the idea of eyes-closed to draw, so I leaned in as he was drawing and told him it was okay to open his eyes if he wanted to.... but he didn't. Watch and see what happens when pen hits paper!!

  • World Autism Awareness

    World Autism Awareness Day On April 2, Autism Speaks, the world's largest autism science and advocacy organization, will mark the annual celebration of World Autism Awareness Day – a global effort to heighten awareness about a disorder affecting millions of individuals and families around the world – with a series of high profile awareness events and initiatives. World Autism Awareness Day (WAAD) was established by a resolution passed unanimously by the United Nations General Assembly in 2007, making autism one of only three health issues to be recognized by the UN with its own “day.” World Autism Awareness day - 2015 April is Autism awareness Month - Can we please stop stimming? (the Word - not the Behavior). Stimming? Seriously? Oh Please! Autism awareness for me means doing what I can to dispel the myths and inaccuracies of what is and isn’t autism. This year I would like to talk about stimming – it’s a derogatory, inaccurate term and I would like to see it melt into the past, like institutionalizing autistic children. It’s called “Stimming” – short for self-stimulatory behavior – and it’s an all-encompassing term for the seemingly odd behaviors seen in early childhood autism, like the flapping of hands. Who am I to want to demand a change in medical terminology? I’m one of the first autism moms - from before the surge in prevalence. My son, Matt, and I have been doing this for a long time and in my opinion the term is highly inaccurate. I see no “self-stimulating” behavior, and the words themselves feel derogatory, as if my child was unable to feel anything and had to flap to simply stay awake. My son was diagnosed with regressive childhood autism in 1988. The severity of his disorder was brought home by the recommendation by an entire team of specialists to institutionalize him – he was only 2 years old. I went against that recommendation and brought my moderate –to-severely autistic, and mostly non-verbal, son home instead. We learned about autism the old fashion way – by observation, trial and error. We have navigated the choppy waters of autism, and pushed the boundaries of what experts thought autism was, for Matt’s entire life. Years ago when the term, “stimming” entered the conversation on autism I thought my head would explode. Seriously? People really think they need to self-stimulate? Think about it a moment…. A child who is bombarded by huge amounts of environmental stimulation coming at them from lights, sounds, textures, tastes, etc., does not need to self-stimulate to “feel” anything. They already feel way more than the neurotypical child. It’s another one of those phrases that begs the question, “Who came up with this stuff?” For Matt, the behavior made itself known through his hands - a twisting of his hands at the wrist – back and forth, back and forth, and flapping on occasion, just to mix things up a bit. So, while he didn’t actually flap his hands constantly, he did move them constantly. The term didn’t exist for this type of behavior – but the doctors and therapists at the hospital where he was diagnosed certainly had an opinion about it – I was to stop him from doing it. Grab his hands and hold them still. And like a good little drone, I did – for about 2 weeks. Within those 2 weeks I was observing my son, watching and learning and wondering why he would “self-stimulate”. I came to the conclusion that it was emotional communication trying to be released from little boy who had trouble getting his emotions out. When he was excited, those hands were turning quickly – almost a blur. When he was content they moved in a slow, methodical rhythm that denoted calm. When he was anxious – they flapped. Communicating emotion is much more difficult then say, wanting a drink of water. Wanting a drink he could point to the glass or to the faucet or to the refrigerator. Wanting to tell me he was joyful and excited? Hmmm….. Nothing to point at. His emotions were in his hands. Communication was in their movement. Do I really want to grab his hands and make him stop? To be fair, I am only an expert on Matt – not autism. I couldn’t tell you about other autistic children. I was only able to read Matt’s behavior and observe the link to his emotions. Actually, there were no other autistic children around at the time – Matt had a rare 1:10,000 communication disorder called autism, and no one had ever heard of it. There was no Internet – no one to share notes with or compare behaviors with. So maybe, just maybe, his “stimming” was different than other autistic children – and only another parent can say whether or not they noticed the connection to emotions too. Feel free to let me know. I do know that as he got older, and could communicate better with facial expressions, his hands didn’t twist or flap as often, and when a few words made it into his vocabulary that could describe how he felt, the flapping went extinct. Stimming – it’s an awful word that suggests a child is not communicating with his environment – and feels nothing….. I hate the term. It has nothing to do with autism. Emotional communicating behavior would have been more accurate. And as for holding his hands still? As I said, after a few weeks of doing what the “experts” suggested I just gave up. I watched him twist and flap and I knew his brain was working on how to repair communication roads. I felt – I knew – that he was doing it for a reason, and I would not interfere with the process. It came to me one bright, sunny morning. We were sitting in the kitchen, my husband and I, and Matt was on the back deck just twisting and twirling around. How old was he? Three? Four? He had his Hot Wheel cars and a ramp to run them off of, and oh my, was he just the happiest little fellow. My husband looked at me and said, “Shouldn’t we stop his hands from doing that?” “No” I replied – a smile on my face. “Look at his joy . . .” We watched the happiest person on earth roll one car after another along the ramp and into a flight pattern across the deck. Each car then crashed several feet away and the response to the flight / crash sequence was pure joy. Matt twirled in a circle and twisted both hands over and over, until he went to pick the next car for next aerial mission. “He’s so happy . . . let him flap”. And I never again quieted his hands. Turns out I didn’t have to. Matt did it himself, in his own time. The years flew by and those “stimming behaviors” (ugh! Just using it here hurts . . .), disappeared for the most part. Matt grew and learned and moved forward every year. He graduated number 4 in his class, with honors, in 2005 (the same year Autism Speaks was founded). In 2013 he moved into his own apartment. Matt is again doing the impossible – (still a trail blazer, that one), and I am so very proud of him. My advice to those new to autism and the flapping – let’em flap. And during the month of April – Autism Awareness Month - can we please push to change that terminology from the inaccurate “stimming” to something more accurate, like “emotional communication behavior”? Who’s with me? World Autism Awareness Day – April 2 - has rolled around again and the battle cry for acceptance instead of awareness is again all over social media. The acceptance campaigns complain about awareness and try hard to convince us that awareness is no longer needed – such an awful thought. There can be no acceptance without real awareness and many people – especially the mildly autistic - seem to have a difficult time understanding that. Shall I share a secret? I think of those on the spectrum and hereby confess that I am still seeking awareness myself – even with having raised a moderate / severely autistic child for 29 years! Acceptance has never been the issue - ever. Awareness however, that’s a different story. You hear people say, “If you’ve met one person with autism, then you’ve met one person with autism” – but they don’t really seem to understand that phrase. Let’s see if I can get this across without offending half the people with autism. I’m betting I can’t . . . because awareness is still lacking in most of the autism community about others on the same spectrum. Hold onto your hat . . . The high-functioning side of the spectrum has advocates and writers and people whom recognize their autism and have a voice. The problem is most can’t seem to see the difference between themselves and an individual on the opposite end of the spectrum – those not in the high-functioning range like themselves. Some are professional people with spouses, kids, careers, and talents that can shine brightly and bring comfort and empowerment to others like them. They may have difficulties in some areas of socialization, or with some environmental stimuli, but they enjoy life – a full and wonderful life - where they are free to pursue those dreams and be those advocates, but unfortunately, in reading their stories I find they seem to have no clue to the difficulties of others with autism along the various degree -points across the spectrum. Sometimes their words even come off as cold-hearted, and I admit that I have stopped reading their books and articles as a way to help my own son - because, quite frankly, they demonstrate a lack of awareness of autism as a whole. Now don’t go taking that all wrong. Their stories are still valued as they reveal something else - a way to embrace their unique qualities, take pride in their differences, and while this type of awareness is glorious (good for them), they don’t speak for my son. To see things from their point of view has been difficult for me. Not one article or book has changed my view of my own son’s autism or given me an ‘Ah-ha’ moment as to how to help him. Sorry, but it’s true. Nevertheless, I kept reading them for a different reason – as a way to open my mind to see things through their eyes, at their level of autism. I admit I did find them helpful in understanding a few of my friends on the milder side of the spectrum – and for that, I thank them. In my own search for awareness of the milder side of autism I have found it even more comforting and understandable in conversations with a dear friend of mine, Kay, who is high-functioning. She has been wonderful and enormously helpful in illuminating the struggles of an autistic woman on that end of the spectrum. But she’s a rare one. Many I have asked fairly simple questions of, just shut me down, as if it were insulting to them to share with a non-autistic person. But most high-functioning advocates really are a blessing to the awareness of high-functioning autism. Unfortunately, many in that group are pushing to drop awareness campaigns in favor of acceptance campaigns – and yes, there is a difference. For the most part, those talking the loudest about autism and acceptance have so little in common with my son that I find their complaints on acceptance to be rather petty in comparison to Matt’s struggles. Yes, I just said that most sound ‘petty’. I’m being truthful here, not looking for Brownie points. Try to envision it from my point of view. I see mildly autistic individuals with jobs – good careers - and I see them having a spouse and children – a nuclear family with friends – an actual support system. Here are people who enjoy the freedom to live their lives as individuals, make choices, strive and reach monumental goals. They have a voice! They are being heard. Woohoo! Good for them! But . . . as I read and listen to them I realize they have very little in common with the struggles of my moderate / severe autistic son. I have even been attacked on social media sites more than once for talking about the struggles of my son and by those who claim to have autism. They seem to feel they know more about how to raise him than I do. It’s hard for me not to think their unaware of the spectrum. Their concerns seem fairly minor to me when my main goal for 29 years has been to keep my son from being institutionalized - so, in my mind, in my world, their grievances seem petty in comparison. Their remarks simply reveal an unawareness of a spectrum. Do you get that? I would give anything for Matt to have such opportunities in his life, for things to be as “easy” for him. Oh for heaven’s sake, don’t go jumping up and down and pounding your fists quite yet – I am not saying their concerns are minor to them – only to me in comparison to my son. Yes, they have a right to push for more acceptance of who they are, and their drive and courage is not something to be ignored or belittled by society – but they are the ones in the news, the ones screaming for acceptance and shunning awareness (as if we don’t need it anymore) and thereby keeping the autism light shining on their struggles – and their struggles don’t match up very well at all with my son’s struggles. I say, go ahead, strive for acceptance for those similar individuals on the higher end of the spectrum, but stop complaining about awareness campaigns. Awareness to me is everything. You see, my son was raised before autism’s giant surge, back when the prevalence was 1:10,000 and no one – not even his own doctor – knew what autism really was. Matt had already graduated high school by the time an awareness campaign was even conceived. We did this – got Matt through school, taught him interactions and how to be responsible enough to live on his own - without awareness and I know just what awareness has done for him since – it’s a big deal. HUGE! Awareness means when he joins a recreation center that others know how to speak to him. It means police officers will know what not to do that would cause him harm and anxiety and stress. It means his doctor knows that just because he says he’s fine, doesn’t mean he really is. Awareness if absolutely gigantic for Matt maintaining his independence! So while those on the high-functioning end are wanting to scrap awareness and push for acceptance, those on the moderate end of the spectrum still need that Awareness, thank you. And let’s go a step even further – Awareness is desperately needed for those on the severe end. The severe end never makes it into the news. Those parents don’t have much support at all. Awareness could do wonders for them. I read about those parents’ who truly need help 24/7 with their grown severely autistic children. They struggle just to maintain hope. They are in constant need of support – emotionally and physically. Every day they search for a way to cope with a life they never saw coming, a child that is massively loved, but taxing on the mind and body. They do everything they can to help their child – love has no boundaries in such things. Their children – grown or not - have no bowel control and wear diapers, they wear headgear to prevent self-inflicted brain damage because they tend to slam their head repeatedly into walls. Their daily activities include washing feces off walls, trying to feed them, trying to take them for a doctor visit, trying to communicate with their child. These autistic individuals – on the severe end of the spectrum - can’t speak a word and are trapped in a body they have no control over. Why can’t awareness campaigns shine a light on them? The world needs to hear their plight also and in hearing and becoming aware of severe autism something could be done to help these families in crisis. Maybe autism research would ramp it up a bit - find the cause, find the cure? How very different from the milder, high-functioning side of the spectrum to the severe end. Now see if you can find that common thread between them that gives each a diagnosis of autism. They are like night and day and the threads of commonality are hard to see, aren't they?. In any awareness campaign for autism the first thing the public needs to know is that autism is an idiopathic neurological disorder – basically, brain damage. Just the word “damage” makes those on the higher end fill with rage – but awareness would let them realize that autism IS damage. It matters how much has been done to the brain. So whereas a little damage can be embraced as making one unique, a lot of damage can be a lifetime of being trapped in a body you can’t control and voiceless to communicate your needs. Matt has little in common with the severe end also, but much more in common with those individuals than he does with the high-functioning end. I have found that it’s very hard to find that common thread throughout the spectrum unless you really, seriously, look for it. We are fortunate that Matt does speak some (even though he is mostly non-verbal) and that’s a huge deal in communication efforts. He can do so much more because he can make he needs known in one form or another (gesture, facial expressions, voice) and he’s not self-injurious. That last one was actually why he was given that “moderate / severe” diagnosis - because he lacked that one single trait – injurious behavior. It’s a ginormous difference. Don’t ever think it’s not. Matt is unique – just as each child on the spectrum is. I am an expert in my child’s autism – just as each parent is for their own child. We share a common thread, the parents of autistic children, but we are as different as our children. And so all I can really do to help the autism community is to spread awareness of what I know. I write of my own path with my son – what helped, what didn’t, what he can do, what he can’t do - yet. In sharing my stories I may be able to help someone, somewhere, who has a child with more threads in common on the spectrum to Matt than to either high-functioning or low-functioning,(from those whom are mild or severe autism). And as I work with Matt I am still trying to be more aware of the differences of those on the spectrum – but it’s hard. After all, isn’t it human nature to want to discuss the similarities? But Awareness is about the differences. What can you do to be more aware? Focus on each child’s individual needs: his talents, his capabilities and areas of struggle. Stop comparing this one to that one as to which is learning faster or more. Remember, Autism is an idiopathic neurological disorder – basically brain damage of unknown origin (yep, I just said “damage” again!), and until people get that – get that the damage can be mild or severe or literally anywhere in between, then awareness campaigns must and should continue. Just I as I am only an expert in Matt’s autism – not autism in general – and therefore do my best to shine a light on the autism level he has: his struggles, his successes., I urge those on various points along the spectrum to shine a light on their specific level of autism and to please stop making generalizations about autism as a whole. Let society see that autism takes many, many different forms, contains various levels of ability, and involves a plethora of struggles. And yes, keep in mind that if you’ve met one person with autism, then you have met ONLY one person with autism. It really is that simple. Be aware that to increase your own awareness of autism you will need to seriously dig past that comfort zone and really examine the full spectrum. Try to understand that autism is NOT just some evolutionary leap within the brain (as many people tend to believe) . . . Its brain damage (I’m sorry, but it is). Take heart in the fact the brain can repair some of that damage by re-wiring itself as the child grows, and it will continue to do so throughout an individual’s entire life-span. That means a child’s environment – both at home and in an educational setting – will have an enormous effect on the continued growth and success of that specific child. Keep in mind that the amount of growth will also be determined by just how much damage was caused initially. Now, combine the degree of brain trauma with the overall learning environment - this is why there is a spectrum. In addition, there’s lots of variables that can influence the brain’s ability to heal. Now, think about the prevalence of this idiopathic neurological disorder as it nears 1:50 children. An epidemic of children with brain damage, ranging from mild to severe and everywhere in-between. Maybe now you understand why I continue to stress that “Awareness Is Everything”. Take the time to share your experiences with others - spread the awareness! Light it up blue Autism Speaks promotes autism awareness each year by asking for major structures around the world to be lit with blue lights starting on the evening of April 1 - 2. Although thousands will turn blue for the night, our own White House has yet to join the movement. Send your own note to the president to please light the White House blue. How will you light it up blue? A single blue bulb lit on the front porch is enough to get the conversation going. Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt

  • Autism Prevalence

    Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt The CDC report Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, United States, 2006 What is causing the increase in autism? This study looked at the various reasons for the increase. It's not as simple as "better diagnostic techniques" or "diagnosing younger children". Evaluating Change in Autism Prevalence: Change We Can Believe In? (from Autism Speaks, Feb 3, 2011) The latest stats from the CDC 1:88 children, 1:54 boys have autism. That's the latest statistic from the CDC for the last year surveyed - 2008. It took them 4 years to get this data and one must wonder - was the Korea study more accurate? Latest Stats from CDC. Press Release from AUTISM SPEAKS: New Study Reveals Autism Prevalence in South Korea Estimated to be 2.6% or 1 in 38 Children Research by U.S., Korean and Canadian Investigators Identifies Children Not Yet Diagnosed and Has Potential to Increase Autism Spectrum Disorder Prevalence Estimates Worldwide New York, N.Y. (May 9, 2011) – In the first comprehensive study of autism prevalence using a total population sample, an international team of investigators from the U.S., South Korea, and Canada estimated the prevalence of autism spectrum disorders (ASD) in South Korea to be 2.64%, or approximately 1 in 38 children, and concluded that autism prevalence estimates worldwide may increase when this approach is used to identify children with ASD. “Prevalence of Autism Spectrum Disorder in a Total Population Sample,” published today online in the American Journal of Psychiatry reports on a study of all children (approximately 55,000) ages 7-12 years in a South Korean community, including those enrolled in special education and the disability registry, as well as all children enrolled in general education schools. Children were systematically assessed using multiple clinical evaluations. The research by Young Shin Kim, M.D., M.S., M.P.H., Ph.D. of the Yale Child Study Center, and her collaborators Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D., Eric Fombonne, M.D., Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D., Soo-Jeong Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D. and Roy Richard Grinker, Ph.D. found more than two-thirds of ASD cases in the mainstream school population, unrecognized and untreated. “These findings suggest that ASD is under-diagnosed and under-reported and that rigorous screening and comprehensive population studies may be necessary to produce accurate ASD prevalence estimates,” stated Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “Autism Speaks funded this study to support better detection, assessment and services and to encourage international autism research.” According to Dr. Kim, experts disagree about the causes and significance of reported increases in ASD, partly because of variations in diagnostic criteria and incomplete epidemiologic studies that have limited the establishment of actual population-based rates. “We were able to find more children with ASD and describe the full spectrum of ASD clinical characteristics,” said Dr. Kim. “Recent research reveals that part of the increase in reported ASD prevalence appears attributable to factors such as increased public awareness and broadening of diagnostic criteria. This study suggests that better case finding may actually account for an even larger increase. While the current project did not investigate potential risk factors in this particular population, the study does set the stage for ongoing work to examine genetic and environmental factors contributing to the risk of ASD.” This study is further evidence that autism transcends cultural, geographic, and ethnic boundaries and that autism is a major global public health concern, not limited to the Western world. To date, there is no evidence of differences in the way ASD is expressed in children around the world; however it is possible that cultural factors may impact diagnostic practices and prevalence estimates. As a result, the South Korean study took a comprehensive approach to mitigate potential cultural bias. According to Dr. Grinker, a cultural anthropologist at George Washington University, “Parent and teacher focus groups were conducted to identify local beliefs that might influence symptom reporting and to address stigma and misunderstandings related to ASD. Further, clinical diagnoses were established by Korean diagnosticians with extensive clinical and research experience in both the U.S. and Korea and were validated by North American experts.” The study does not suggest that Koreans have more autism than any other population in the world. What it does suggest is that autism is more common than previously thought and that, if researchers look carefully, especially in previously understudied, non-clinical populations, they may find more children with ASD. In addition to the South Korean study, Autism Speaks is supporting similar epidemiological research efforts in India, South Africa, Mexico, and Taiwan, including the translation and adaptation of the gold-standard diagnostic instruments into languages spoken by more than 1.7 billion people worldwide. “This is the first comprehensive population sample-based prevalence calculation in Korea, and replication in other populations is essential,” explained Dr. Dawson. “Notwithstanding the need for replication, this study provides important evidence that the application of validated, reliable and commonly accepted screening procedures and diagnostic criteria applied to a total population has the potential to yield an ASD prevalence exceeding previous estimates.” “We know that the best outcomes for children with ASD come from the earliest possible diagnosis and intervention,” concluded Dr. Kim and her colleague Dr. Koh from the Korea Institute for Children's Social Development, “Goyang City, host of the Korea study, has courageously responded to these study findings by providing comprehensive assessment and intervention services for all first graders entering their school system. We hope that others will follow Goyang City's example so that any population based identification of children with ASD is accompanied by intervention services for those children and their families.” This research was funded by a Pilot Research Grant from Autism Speaks as well as grants from the Children's Brain Research Foundation, NIMH and the George Washington University Institute for Ethnographic Research. About Autism Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, one in 70 boys. The prevalence of autism has increased 600 percent in the past two decades. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown. About Autism Speaks Autism Speaks is the world's largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $160 million to research and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning “Learn the Signs” campaign with the Ad Council has received over $258 million in donated media. Autism Speaks' family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 25 states thus far, with bills pending in an additional 13 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit . About the Co-Founders Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and Chairman and CEO of the Palm Beach Civic Association. He served as Vice Chairman of General Electric; and as the Chief Executive Officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, Mission Product, LLC and the New York Presbyterian Hospital. Suzanne Wright is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received numerous awards such as the first ever Double Helix Award for Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National Health Leadership Award and The American Ireland Fund Humanitarian Award. In May of 2010 they received Honorary Doctor of Humane Letters Degrees from St. John's University in Queens and delivered the commencement address as the first married couple to be bestowed such an honor. Global Autism Prevalence Global stats by the CDC Autism Prevalence and Statistics Read the autism prevalence and statistics report by the CDC. Here's a clip from the report . . . . Prevalence in the United States for years 2002 - 2006 It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD. ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls. However, we need more information on some less studied populations and regions around the world. If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD. Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD. Studies in Asia, Europe, and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%. A recent study in South Korea reported a prevalence of 2.6%. Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.

  • Transition Updates!

    May 2015 Got a conure parrot.....Max. Great bond going on between Max and Matt - can you tell? An unexpected gift.... I had mentioned last week to Matt on the phone that I was limping around with an injured foot. When he came over for the weekend he saw me sitting - a lot - with my foot propped up. It was a great visit (and the Superbowl game was so fun with Matt here!). Matt never mentioned my foot... he doesn't do that. When he was ready to go on back to his cozy home yesterday something awesome happened. It had been a long weekend for him with mom and dad - he stayed 2 nights instead of just one. Now Hippie Hubby was taking him back to his place and me? Well.... I had to stay home, sit around, and prop that dang foot. Hippie Hubby was going to take him grocery shopping, and to get pizza, and I will admit I was feeling left out and jealous.... that's my job after all. Matt had his bags packed ready to go and in the hallway. My bedroom door was open and I was watching him do the "I'm leaving now" routine. He looked into my room and noted I had my foot propped on a pillow and suddenly his face lit up, "OH!" he exclaimed, marching back to his bedroom. Within seconds he emerged again and came straight into my bedroom - with a gift. He proudly handed it to me - a beautiful cartoon drawing of Sylvester and Tweety. I think this was a get-well card, Matt style. Something he knew would put a smile on my face and joy in my heart. It's beautifully done, not an eraser mark anywhere, and dated Jan. 29 - the day I told him my foot was hurt. I can usually get Matt to draw me something if I ask, and he knows how much they mean to me. He gives me a drawing every Mother's Day and another at the start of school for my office wall. But he's never just done one for the heck of it and given it to me...there's always been a reason. This one - out of the blue and unexpected - touched my heart so deeply. My face lit up when I saw it and Matt smiled from ear to ear. "Awww.... thanks Matt!" I exclaimed. Matt bent down and hugged me tight, gave me a kiss, and then in his proud Matt voice, told me about each detail he had added.... a description that was fluent and understandable with not a break in his speech, not a stutter nor sign there was any difficulty completing. His description of this beautiful drawing was an added bonus. How can I not smile at the characters, be dazzled by the colors and touched by the sentiment? How can I not feel on top of the world when I hear my son speak so well - as if there were no roadblocks on the thoughts-to-speech neural highway. My heart literally soared. Speaking so well is a very, very, rare event. Now I can't wait to hang it on my office wall..... and each time I look at it I will think of the way he did this with no special occasion, no prompting. I will think of its perfection and bold colors. I will remember his fluent voice and the big hug.... and the kiss. Matt....light of my life, you heal me in more ways than you will ever know.... April 2015 Matt called me from Kmart. He was out and about on this beautiful spring day - and it was early (3pm) Wow - what an amazing young man. After hanging up with him it occurred to me - I felt no fear for him.... this mom is slowly learning how to just enjoy watching him take flight without worrying about the height for which he soars. Take flight, Matt. Spread those wings and see the world! April 2015 Matt called me from Kmart. He was out and about on this beautiful spring day - and it was early (3pm) Wow - what an amazing young man. After hanging up with him it occurred to me - I felt no fear for him.... this mom is slowly learning how to just enjoy watching him take flight without worrying about the height for which he soars. Take flight, Matt. Spread those wings and see the world! March 2015 Guess who is now a member of the Rec Center? Oh yeah, and ..... he's planning his first adventure for Tuesday. Tuesdays and Thursdays when it is sunny... those were his words. So on beautiful spring days my son will walk to the rec center, show his ID card, and enter the world of community and fitness and strangers - this is HUGE!!! I wish he would have picked a day this week so I could go too (spring break, you know) but maybe that is why he chose next week... so momma couldn't come Click to add text, images, and other content Christmas 2014, and the Battle of the Wrapping paper Tubes It was an unusually warm Christmas Eve when the time was announced for the battle to commence. Each opponent stood with ninja-like readiness, the titans of the game standing, facing each other and ready to battle to the death. It was hard to tell who struck first. As the light-saber swords whisked through the air the sounds of laughter and several "HA!" filled the air. Within minutes, Christopher's sword bent, resulting in a limp saber that was difficult to aim. His ninja cunning was superb, he immediately took the floppy tube, tore it half and turned it into nunchucks. Matt was taken off guard by this swift turn of events, but continued on flashing his sword with ninja-like reflexes until... his bent too. Christopher, being the good brother that he is, traded weapons. The battle continued. The second sword was immediately turned into nunchucks too, and the battle raged on. The swirl of short tubes sliced through the air in between connections with the each participants body "whomps!", when a strategic jab would make contact with the opponent's head. Sadly, Christopher's weapons unfurled first leaving him unarmed against the mighty warrior, Matt. Matt, having a heart of gold smacked his brother one last time before declaring himself the winner. Battle of the wrapping paper tubes.... best one ever. Merry Christmas, everyone! November 11 The Doctor Visit to Oz Who could predict that Matt could sleep at night without there being something seriously wrong? After all, this is a guy who gets up at 6pm and is wide open until 7am. He calls at 7am as he is getting ready for bed. It usually takes him another hour before he crashes. So when he was discovered sleeping from 10:30pm – 2am red flags went up. Something must be up… right? A fluke here and there is no big thing because he does on occasion try to get up early (early being 1:00pm in the afternoon) but when it happens in a streak like this past week then something’s up – has to be, right? I talked to Matt this morning and he was sounding good, told me what he watched on TV last night and the games he played. Just after I talk with him, hippie hubby calls and tells me that he called Matt last night – several times. When Matt finally answered the phone he told Tom he was “just taking a nap”. A four hour nap – at night, when it’s dark . . . Something is surely not right. Keep in mind that Matt does not respond to pain. He could have a third degree burn and you would never know, a toothache, a headache, a broken arm – he does not respond to pain (it does not mean he doesn’t feel it… he just doesn’t respond to it. It’s complicated). So, after much personal debate about whether to go over and check him, take him to a doctor, or just wait and go over tonight, I decided that a trip to the doctor was in order. I am not a hysterical, worrier mom, nor a determined get-in-your-face warrior mom either. At least, not anymore– those monikers were of a different time when Matt was little and I had to push the medical professionals in a new direction. But let’s consider now that the last time Matt saw a doctor was in 2011… 3 years ago, to have a suspicious mole removed. He is the healthiest guy I know, with his last antibiotic taken 19 years ago – wow. Nineteen years. I’ve changed over those years too. I let the ignorance slide because quite frankly, you can’t fix stupid when there’s arrogance involved – and doctors tend to be arrogant. Imagine now how I felt when after finally succumbing to the need to have my son seen by a doctor that I find that today of all days, Matt’s doctor was not in the office. He would have to see another doctor. I let them know Matt was autistic. Driving to town I had 2 repeating thoughts; what’s going on with Matt? And *sigh* I will have train another doctor (– dear Lord help us). I called Matt and told him I was on my way, and that I would be taking him to see a doctor this morning. Matt’s reply was a resigned, “okay”. No argument, no telling me he was fine. Another red-flag went up. When I arrived he was laying on his couch with a pillow over his head (normal sleep position). He slowly rose to greet me. The poor guy was tired. I told him why I wanted a doctor to check him out and explained that it would most likely require some blood-work. We practiced each step of a blood draw, ending in how to hold his arm still. He almost panicked – but I reminded him of his courage, his age, and his adulthood status – and the panic passed. I told him the doctor would most likely push on his belly – so we practiced that too. When I pushed on Matt’s lower right side, he jumped – his knees bending to a half-fetal position. “Does that hurt?” I asked him. “No, I’m fine.” (well of course). “Can I try that again?” I asked. I pushed down again in the same spot. He was ready for it that second time and although he still flinched, it was far less of a reaction than the first. Hmmmm? . . . Appendix?? Yep, we’re definitely going to see a doctor. After filling out forms a nurse came out and called his name. Her distance from him, her expressions on her face, even the hesitation in her voice – all said she was scared of my son. Silly nurse – she should have been scared of me, not him. As I watched her in her body language I thought, ‘Seriously? Don’t they teach you about autism in nursing school?’ She had no interaction with him (not even a smile) until she had to take his pulse (using a pulse-ox) and blood pressure. She never explained a thing to him and Matt was fearful of her. I talked him through each, explained what they were for and gave her my best ‘Liz- look’ (it’s an evil – go-to-hell look that I reserve for those most incompetent of people). Enter the doctor. The doctor took a short history and did a short physical. He barely touched my son. Matt never flinched when his lower right side was touched – and I do mean touched. The doctor didn’t press down at all. Since when does having autism mean that a physical is just cursory glance? How many children are sick and their illness not discovered because doctors and nurses are afraid to touch them? The doctor turned toward me and basically asked what I wanted him to do… so I gave him my list of blood-work and request for a chest x-ray. I told him of Matt’s previous bout with pneumonia – no symptoms except a low grade fever and a change in his sleeping patterns. I told him he didn’t even cough. Of course, the doctor says, “You can’t have pneumonia without a cough”, for which I kindly replied, “That’s what the first doctor said that missed it. The second doctor an hour later took an x-ray and found 1 lung completely full and other half full and he spent a week in the hospital.” This new doctor then gave me the look – you know the one – the one where they are ‘all-knowing’ and moms are just peons, ignorant and silly. He decided he would order the bloodwork – but not an x-ray, just to prove his point. He ordered a urine analysis too – though I really didn’t think he needed that (because there are very significant smells that go with that – smells Matt did not have). Oh goody, here comes Miss Sunshine nurse with a urine cup. Silly nurse handed the cup to me. I nodded toward Matt. She grudgingly handed the cup to Matt – with no explanation as to what it was for. *sigh, again* I walked Matt down the hall to the bathroom – which was right next to the lab and explained what to do. Matt, in his wisdom, looked at the cup, then at me and wrinkled his nose and uttered, “Ewwww”, then walked into the bathroom. The walls are thin and you could hear him doing an outer monologue, “What kind of place is this? Happy Veteran’s Day (sarcasm) … oh yes, it’s Veteran’s day (happy) ……ahhhh (frustration) …….Okay, almost done, almost outta here (resigned).” As Matt was getting his sample and speaking, I was smiling… thinking, yep, that’s the guy I know and love. Two lab techs in the lab looked over and I explained to them that Matt was autistic and that we had practiced this, but I would really appreciate it if when they took his blood they announced each step – and they were happy to help. (Excellent lab staff). Matt held steady, looked away at the crucial insertion of the needle, made a face that said ‘ouch’ and then in a flash it was all over. The tech asked him which band-aide he wanted and seeing the wonderful cartoon assortment, forgot that he had just had a needle in his arm, and replied, “Roadrunner!” Back to the room we went to await the results….. When the doctor returned with the “All is normal” result he smirked – seriously. How did I keep from head-slamming him into the exam table? I must be seriously mellowing in my old age. Or maybe, I have seen this type of interchange enough times to know that awareness is not reaching those that really need it, and some are too arrogant to even realize they need it. To top off the visit, this soft-spoken, condescending physician remarked on how he knew someone with an autistic child and they made sure he was not left alone, that he had a caregiver at all times and he just cut short of saying – “and why don’t you?” So this is what independence is to those with no or very little autism awareness – an incompetent mother? He basically called me a bad mother for allowing my son to be independent! Between you and me, that is why I wrote the book – so idiots like this may learn something about freedom, and longing and other very human emotions that are part of autism. I bet this guy still thinks of autism as robot-like. I’m glad I took him so that he could at least have the blood-work done, but all else was basically a waste of time and energy. As I contemplate the signs and symptoms I have come up with 3 things it could be. 1. A slowly festering appendix 2. Another round of silent pneumonia 3. A virus… a simple virus that has him worn out and tired and screwing up his sleep cycle. I want to think its number 3 – but I am watching for possibilities 1 and 2, and to be safe, Matt is spending today with me and tomorrow with Tom. This is what an illness is like in the land of autism. And those professionals interacting (and I use that term loosely) with my son are like Dorothy in the land of OZ. When dealing with a person with ASD - especially as severe as Matt’s - I just want to scream, “People, you are not in Kansas anymore!” Toto has more sense about how to treat people than these people did. Where’s those flying monkeys when you need them? November 7 My mind has been jumping from one thing to another all week.....I have my first book-signing event (EVER!) and Matt has been in his apartment now for 1 full year. It's also 30 years ago that my son Daniel, was born - then died (later the same day) and so, as you can imagine, my head is spinning... So... let's talk about all this as each relates to the other. Tomorrow is my very first official book-signing (Wythe County library, 10-12) and I am nervous... I don't know how this all works, and I am winging it. I have everything I think I will need, but how does one know how many books to bring to these event? The boxes are heavy.... I am not strong (no upper body strength) ..... too many boxes and I may collapse in a heap in the library parking lot, but if I don't bring enough I will feel guilty - yes, guilty. Each dollar that is made from the sale of these books belongs to Matt. He has a dream - I am his "bringer of dreams" and my first book is for him. His dream has just recently been discovered - he wants to be a photographer. Matt can buy a camera, and photo albums and a tripod and get started on this new dream of his. I could not afford such luxuries without the extra income. I am looking forward to Matt shopping for actual items that will enhance his desire to be a photographer. Is it a co-incidence that Matt has decided what he wants to pursue just as the book is getting ready to go on sale? Is it co-incidence that the first book-signing is on the first anniversary of his independence? And there's another connection and my mind has been deep in thought for days on this. My son, Daniel, would have been 30 years old tomorrow (RIP, my sweet son). If Daniel would have survived, I never would have had Matt. The implications of all these ties suggests there was a plan in place the whole time. Was it fate that Matt had some of the best teachers on the planet? The best speech therapist in the world? Was it fate that Matt's paraprofessional, an angel to be sure, was just the right person to take my place all day while Matt was in school - protect him, help him, guide him in his work and in his interactions? Was it all just a co-incidence? Tomorrow I will be selling my book for the first time as a real, solid, hold-in -your hand book, and with all the stars aligning I feel as if it was all meant to happen exactly as it has. But feeling all of that (and writing all of that) makes it seem as if it were all so easy.... but Matt and I know better. We know the courage it took for him, the amount of focus it took for me. We know.... we carved a path alone. We did this before there was an increase in autism, before anyone had even heard the term. There was no Internet, no Autism Speaks, no awareness of any kind - and still, look at the progress he made . . . it fills my heart. And so tomorrow is the first big day of a whole new journey. I love writing, I love watching and learning and sharing what I find. Matt loves taking pictures, getting them printed and collecting his favorites. We are still on that path, but the scenery sure has changed. I can see a brightness ahead - a future that is fulfilling for us both. And you - yes, you - have been a very large part of this journey. Thank you all, for caring about this sweet man that is my son. For supporting his dreams and for reading my stories. You . . . you have made this happen for us. Thank you - and I will see you soon. November 2 Went grocery shopping as usual with Matt before taking him back to his place. When we finally met up later I noted a bag of microwave burgers in the cart! Woohoo! He bought buns and pickles too. Hmmm... wonder what he's planning to eat this week? The snow spoiled our planned party for last night and his anniversary party has been now moved to the Nov. 15. As long as he was at my house I got him to try the burgers, showed him how to cook them and waited for the verdict. Looking in his cart and seeing them means yes, he likes them! Maybe burgers will be on the menu for his party? Even if not, i was nice to see him with something new. In addition to the awesome addition to his 15 foods, Matt also called me on the cell phone to tell me he was ready to go - he was done grocery shopping. I had just said to Tom today that I thought he would call me first pretty soon, and what a great day that would be - and then... he did. I always call him to see how he's doing while roaming in the store. I always give him lots of time. I wait for the call - it doesn't come and then I end up calling him. Tonight - he called ME! So, I would say that today has been a good day in the world according to Matt. October 23, 2014 Ever have a day that just felt ..."perfect"? That was yesterday for me. Great weather, perfect timing to each event, good food, and a fun time. During our lunch as we were discussing the amazing photographs Matt was taking I asked him if he would like to publish a book on his photography. Not only did he say "YES!" he said it with enthusiasm and got excited about doing it - excited enough to want a new camera, pick places to photograph, and in that moment I was hit with the "big picture". Matt has been an artist since before he was autistic - it's a mom thing to know such things. I have always focused on his drawings, he did so many of them and he did them every single day. I always assumed his art would be his ticket to a paycheck. I knew he loved photography - and the only course he would take at the college was photography - but I never saw it as more than a hobby.... until he moved to his own place. Over the past year I have watched him make photo album after photo album. We have talked about perspectives and lighting and visual art, but it never struck me as more than conversation - until yesterday. As always, Matt wished to go off on his own at the Mill. As always, I watched him to see where he was and what he was up to and read between the lines of non-verbal behavior. I watched him lay down on the sidewalk to get a picture of leaves, sit on the edge of a bank to get a picture of the sunlight on a small pool of water, and do 360 shots taking a half-step turn for each picture. Hundreds of pictures.... Matt showed them to me - beautiful, artistic, unique - all describe his view of the world around him. Of course..... He has different view and a different perspective. I've known this for most of his life - why did it take so long to hit me as to what he could do with it? So - yes, Matt is now officially going to make a book of his photography. "From a Different View". We have set a deadline for date to publish at 2 years - in 2016. He has homework - deciding where he wants to get specific pictures for his book and for each season. He has purpose - going for walks can now be just about taking photos and not doing a grocery run. Life, for Matt, has taken on a new meaning - and his joy at this direction is on a path in the pursuit of happiness AND fulfillment. So please join me in raising your glass (coffee mug, soda bottle, etc).... Here's to Matt. May this quest and dream be the path you have been looking for, and may all your dreams come true. *clink* October 14 We were in the local Wal-mart. Matt goes his way to do his shopping and I go mine - to walk around aimlessly looking at things I don't need. Sometime later I am walking toward the area Matt loves most - videos, games and pictures. I see him a split second before he sees me. Matt immediately juts his arm over his head and waves enthusiastically. This means he found something he really likes. As I approach his cart he reaches in and pulls out a t-shirt - minions with "Bee Doo, Bee Doo" on it and starts to laugh. I smile and as I'm telling him what a great find he has he begins to show me everything in his cart - every single thing - even each food item - and lastly picks up a small photo album and gleams. The presence of a photo album tells me he's getting pictures made. "Are you getting some new photos made?" I inquire - knowing the answer. "Yes! Virginia Tech!" he replies. I am thinking, well of course they are. He's in a great mood, has more shopping to do, so I wander off again.... and decide to call hippie hubby. "You should call Matt - he's in great mood!" I tell him, that's code for "Matt will speak today". Tom calls Matt. When I next see Matt we are at the front of the store and Matt is on the phone still talking to Tom. I smile - knowing how wonderful it is when Matt has something to say. I wait a second and then ask him which direction to go..... Matt, still on the phone, gives me THE HAND. He extends his arm and throws up his hand in a "halt" gesture - which stays there as he continues to speak to Tom. I got the THE HAND!!! I'm am trying so very hard not to laugh out loud, so I turn and walk a few paces and giggle to myself. I find an open register and proceed through the tight passage as a cow through a chute... moving slowly. Matt comes up behind me, "I was talking to DADDY!" he exclaims, giving me the reason for the "halt" gesture. "I know! That's why I gave you some privacy". I smiled. He smiled in return - knowing I had not been offended by his gesture and all was well. Matt gave me THE HAND!!! Personally, I LOVED IT! What that simple gesture meant to me was that Matt felt secure enough in our relationship to do it, that his priorities matter over mine, and that he was in charge. What's to be offended by? Yes, ladies and gentlemen, I am now among a select group of people who have gotten THE HAND - and I am very honored to be one of them. Woohoo! October 18, 2014 We are doing minions this year for our Halloween pumpkins. We gathered supplies and went pumpkin shopping and got ready to create. Matt needed guidance - but that's all. I showed him the steps, showed him how to attach each item, use the paint brushes, cut pipe and pipe cleaners. I showed him him how to make goggles and eyes. Matt watched, practiced a bit and then... he sat down and just went for it. As he was attaching the hair he said, "Just like doing crafts at Sheffey.." Sheffey was his grade school - he was there prior to his memory loss. Matt had a memory, sparked by making minions. So not only did I get full participation and interaction with my son tonight, I got a glimpse that Matt has a few memories that were not taken from him. What a great night!! I did 1 large pumpkin for the house and by then it was getting on 1:30am. I was tired and slipped up on the mouth.... *sigh*. I white it out and show Matt my mistake. "Think you could help me with this?" I ask. "Oh, Okay." Matt replies looking sadly at my crescent-moon mouth all whited out. The paint was wet and neither of us could do anything until dry - so I say something about getting it tomorrow and off to bed I go. Matt evidently had other plans. I awoke to a perfectly completed mouth on my giant minion. It wasn't an elf or a good fairy - it was Matt.... talented, empathetic, Matt - who felt bad for me and fixed the problem. Looks wonderful, right? The 2 on the left our mine, the 2 on the right are Matt's and the one in the center - the big one - was a combined effort. October 11, 2014 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. Initiated into the order of the "HAND" October 14, 2014 We were in the local Wal-mart. Matt goes his way to do his shopping and I go mine - to walk around aimlessly looking at things I don't need. Sometime later I am walking toward the area Matt loves most - videos, games and pictures. I see him a split second before he sees me. Matt immediately juts his arm over his head and waves enthusiastically. This means he found something he really likes. As I approach his cart he reaches in and pulls out a t-shirt - minions with "Bee Doo, Bee Doo" on it and starts to laugh. I smile and as I'm telling him what a great find he has he begins to show me everything in his cart - every single thing - even each food item - and lastly picks up a small photo album and gleams. The presence of a photo album tells me he's getting pictures made. "Are you getting some new photos made?" I inquire - knowing the answer. "Yes! Virginia Tech!" he replies. I am thinking, well of course they are. He's in a great mood, has more shopping to do, so I wander off again.... and decide to call hippie hubby. "You should call Matt - he's in great mood!" I tell him, that's code for "Matt will speak today". Tom calls Matt. When I next see Matt we are at the front of the store and Matt is on the phone still talking to Tom. I smile - knowing how wonderful it is when Matt has something to say. I wait a second and then ask him which direction to go..... Matt, still on the phone, gives me THE HAND. He extends his arm and throws up his hand in a "halt" gesture - which stays there as he continues to speak to Tom. I got the THE HAND!!! I'm am trying so very hard not to laugh out loud, so I turn and walk a few paces and giggle to myself. I find an open register and proceed through the tight passage as a cow through a chute... moving slowly. Matt comes up be hind me, "I was talking to DADDY!" he exclaims, giving me the reason for the "halt" gesture. "I know! That's why I gave you some privacy". I smiled. He smiled in return - knowing I had not been offended by his gesture and all was well. Matt gave me THE HAND!!! Personally, I LOVED IT! What that simple gesture meant to me was that Matt felt secure enough in our relationship to do it, that his priorities matter over mine, and that he was in charge. What's to be offended by? Yes, ladies and gentlemen, I am now among a select group of people who have gotten THE HAND - and I am very honored to be one of them. Woohoo! Click to add text, images, and other content October 1, 2014 Survivor! Yep, tonight is Survivor night.... but there's been a glitch in the routine. Tom works tonight and I won't get home until after Survivor is over.... Matt will have to watch alone. He had to call Matt and break the news.... Sounds sad and depressing, and for my sweet son it was certainly disappointing news from daddy. Then I called him last night and said, "You know Matt, that means this is your first time to watch Survivor in your own home all by yourself..." - the happiness in my voice immediately got a positive response, "Yes!" he replied. "That means we will have to watch again - how about Saturday at my house? Just don't tell me who gets voted off - because you are going to know, and I won't." This thrilled him - ah yes, Matt will have prior knowledge, he will know what momma does not, and I heard his voice lift - the sounds of satisfaction?? Hmmm. Matt is excited again - I could hear it in his voice and pictured him standing a bit straighter - that body language he uses when all is right with the world. Just because I only get to talk to him on the phone during the week does not mean I can't hear him - or I can't read him. I find it so amazing the ease at which he can adjust a routine - knowing where we came from and that road we traveled for so many years. Now, here he is, taking it in stride, staying positive, adjusting to whatever comes... what an amazing young man he is. I'm the one feeling the loss of this routine, trying to adjust to the fact that I have to wait all the way to Friday to see him. There are most definitely times when I think Matt does this "punt" thing better than I do. I spoke with him again this morning and the happiness in his voice told me all I needed to know. When I asked him what his plans were for tonight he reinterated all the positive aspects of watching the show at his house, on his own. He then reminded me that Saturday we would have a "Survivor encore" - Ha! Love it! So ladies and gentlemen, tonight is Survivor night, and Matt will watch alone - but that's not a sad thing now... nope, not at all. As for me? I will see him in my mind's eye, laughing, cheering and saying all the lines as he eats his pizza and feels in charge of his evening.... and that makes me smile . Who will be voted out tonight? Not Matt and not me - we got this. The day at the dentist June 26, 2014 Today Matt used his alarm clock for the first time and was up and ready to go to the dentist when I arrived. At the dentist's office I mentioned the soon to be released book and that set the stage for a great conversation - interrupted every few minutes for teeth-cleaning. My hygienist mentioned that they see a lot of autistic kids now - none anywhere near Matt's severity, thank goodness - but they have noticed the increase in number. We chatted after every rinse - never got to do that before. I thoroughly enjoyed my visit today. Meanwhile.... The dentist was checking Matt's teeth before mine - as usual - so that he can discuss his teeth with me. I was worried about Matt not brushing enough and getting a cavity in his partially erupted wisdom tooth - turns out that tooth is doing well. However, Matt's front teeth had a chip.....again..... what is Matt doing to chip his front teeth? We discussed possibly grinding his teeth - which I know he does - but to hurt a front tooth by grinding? Hmmm.... investigation time. On our way out word had already spread about Matt's book and all the hygienists came to the front desk to see him. They asked for an autograph! *gasp* oh no - not the paparazzi!! I explained to Matt that an autograph was simply a signature .... they handed him a post-it note pad, all smiling and waiting to see, would he or wouldn't he. Matt looked at the post-it note pad, picked up the pen and wrote out his name, neatly and precisely. He handed it to one of the ladies and they all looked about to swoon right then and there. "You ladies are the first people to ever to get his autograph!" I said smiling. Oh the joy that filled that office... how wonderful for them to treat my son like such a star - I loved it! On the way to shopping I asked Matt to please think about how he could have chipped his tooth. An hour later we are on our way back to his place and tells me he bumped it. "Bumped it on what, Matt?" He makes tossing gestures and then a argggg as if hit in the face and says "remote". "So, you did something like an AFV moment, tossing the remote in the air, missed your catch and got smacked in the face?" "Yes!" he stated laughing..... So, mystery solved. He said he did it a few weeks ago - I never noticed the chip. I knew he had 1 chip already and I guess I just assumed it to be that old one. The dentist smoothed it out for him and all is well. A mystery solved, the paparazzi contained, no cavities, and lots of smiles all around Matt, and let's not forget his first ever autograph - A perfectly wonderful day at the dentist office... how often does a parent of an autistic child ever get to state that? August 14, 2014 Lots of people filled our home yesterday for my brother-in-law's birthday barBQ. Matt knew everyone except for a new friend, Dan, and he was happy to see everyone and meet someone new. Meeting a new person didn't seem to faze him. Unfortunately, Matt can only handle interactions in short spurts so he would come out for a few moments and listen to conversation, then go back to his room. His room had air conditioning and Daffy Duck's Fantastic Island video - a definite plus. I went to his room and peeked around the corner of his door. "Too hot outside?" I asked. "Yes" he said in a sad almost guilty voice. "That's Okay, Matt, you can just come out every now and then and see everyone. I do think you should invite grandma to see your room. Remember, she bought you that beautiful bedspread and she has never seen it on your bed." "Oh!" His reaction told me he had forgotten that, and he was determined to correct it. He marched down the hallway and toward the back door. Grandma was sitting pretty close to the door - but Matt stopped. He looked at his grandma, then back to me, then back to her. Grandma didn't see him standing there as her back was turned. "Do you need help?" I asked. "Matt nodded and glanced again toward grandma. Initiating a conversation - even if it's just to ask a question - is painfully hard to do. "Thelma, Matt has something he wants to ask you." I said. Thelma turned to look at Matt and Matt asked her if she would like to see his room. Easy-peasy. "Yes, Matt, I certainly would." she replied and slowly got up. She was a bit stiff and moved a bit slow.....Matt walked slowly with his grandma, seeing that she had a bit of difficulty, and his posture was one that was "ready to catch" - I know, because it's the same posture he used with me after my back surgery a few years back. I stayed in the kitchen - just letting Matt do his thing and show off his room. I waited and then wondered - 'does he need help in speaking to grandma?' hmmm... I walked down the hall and peered in. Matt was talking, Grandma was talking, no one needed my help. Actually, I felt bad for having even thought he would.... after all, this was GRANDMA! I turned and quickly headed back down the hall and let them be. Matt would never have asked her to see his room if I had not suggested it. He would never have asked if I had not initiated the conversation for him. These tiny steps of guidance are just as important as big steps of independent living. Sometimes he can, sometimes he can't. When there is a crowd of people it is soooo much harder to do than when he is one-on -one. Matt may have interacted 15 minutes of the 6 hours we had company. 15 minutes may seem so short - and in the overall scheme of things I guess it is, but each minute that he attended the party was was a minute more than he has in the past - and that's the big picture. Each minute was followed by time in his room in the comfort of his belongings - time to de-stress. It was a great party and everyone had a good time.... everyone..... even Matt! After everyone left we took Matt back to his place. He was anxious to get home and rushed us to get him there by pacing and packing the car and pacing some more - he NEEDED his home. "Are you needing to get back to your place?" I said in jest as he paced. In a very serious tone Matt looked at me - "YES!" I guess he loves his place! It's nice to know that Matt has found comfort in being in his apartment, surrounded by his things, with sounds of his choosing, and I am more and more relaxed dropping him off. Matt - you have come a very long way, walked a very long path - to get to this point in time and I am so happy for you. July 14, 2014 Last night's phone call had a surprise . . . . I asked him about his trip to the store with Tom and about his plans for his evening....after a bit of discussion we had a period of silence. Then......wait for it........ "So, how's your day going?" Matt asked ME that!!! Matt asked me!!! 28 years old and that was the first time ever that he asked me about my day! Wow......... another step forward...... August 30, 2014 We hiked at Mt. Rogers today.... so let me tell you about it..... When we finally arrived at the start of the trail we took a moment to look over the trail map. Listening Rock trail was 1.4 miles and rated "Difficult". It was highly suggested that hiking should be in groups of 3-5, and it warned of the vertical steepness of the trail. This trail Matt was itching to do was rated hard because 1.2 of the 1.4 trail was steep - over rocks and tree roots and down the mountain to the overlook at Listening Rock and then a grueling vertical climb back up. We are talking steep.....very steep. * sigh*. "Matt, we have to go slow. My knees might not like this very much. Do you remember that I had to have surgery on both my knees?" yea, I was going for the sympathy card. Secretly I was thinking, Please Matt, pick a different one or keep the pace slow, please, please, please! Matt being the ornery little cuss that he is when it comes to hiking, gave me a sad "poor you" face, turned and proceeded with the hike. Basically, 'Suck it up mom, cause I'm going with or without you'......geez....So much for sympathy... A few steps down the rocks however, he turned and extended his hand toward me - he would help me if I needed. He would catch me if I fall...... he really did care..... "Naw, Matt, that's okay... I have my hiking stick and so far so good... just keep the pace slow." I said. "Oh, okay!" he replied smiling and turned once more to lead the way. We talked a bit - not much though. We stopped and took photos and remarked about how quiet it was and green - so very green - and we just kept going, down, down, down. Then.... there it was. A massive boulder which jutted out into space and so high that we gasped at the sheer beauty of what we were seeing. Ridge after ridge in marvelous blue hues. "That's North Carolina." Matt said. Yep, we were looking into the mountains of another state. We took turns taking pictures and looking out over the vastness of that valley and then..... 3 minutes of rest and it was time to get going again. Time to really challenge those knees .... We followed the trail as it winded this way and that, past boulder after boulder, every step an upward climb. We stopped at a few boulders to grab a drink and take a picture and I suggested Matt breathe using purse breathing to keep from getting exhausted, which he did. Still he walked slower, his left hand grabbing his back and breathing hard. "Does your back hurt?" I asked. "No, just tired... " he replied, but he kept moving, kept putting one foot in front of the other, determined to get to the top. Not far from the top we began hearing vehicular traffic, and Matt turned and smiled, "The road!" Not too much farther.....thank God! As we rounded another bend we came across a young couple in their early 20s, laid out flat on the rock, their shoes and socks off, resting. It may be a bit silly, but I loved that.... we were still moving, (me 55 years old and 40 pounds over weight) and still climbing, and doing better than that couple 30 years younger... *snicker, snicker* When we reached the top we found ourselves at Buzzard's Overlook - a beautiful place we have been to many times before. After pictures of triumph we headed toward the Jeep..... both of us walking a bit faster now, both of us with smiles on our faces and feeling like we had conquered the world. I slid in behind the wheel...Matt slid into the co-pilot's seat.... we looked at each other and suddenly both raised our hands and high-fived hard and loud, with a "YES!".... at exactly the same time. A perfectly timed celebration to end a perfect hike on a difficult trail. Matt pushed me today to do more than I thought I could..... it seems the roles were reversed and we each took up our new role as if it were ingrained. Matt: the leader, the coach, the motivator...... and me: the Mom, the one who knows she can do this difficult trail because her coach's faith never faltered.... just needed a steady gentle push to keep me focused. We make a great team, my wonderful son and I. .... always have, and always will. September 7, 2014 I took Matt back to his place this evening. As we were riding and singing to the radio, Matt suddenly stops singing. He looks at me - really looks at me and says, "I love you." To accentuate the thought he uses his karate-chop motion.... both hands. "Awww... I love you too, Matt!" I said almost in tears. Matt smiles and replies, "We are best friends FOREVER!" Yes, we are. For those that don't know, Matt rarely ever says "I love you" first. This was only the second time in his entire life..... The first time he said it he was trying to apologize for something, trying to make me smile again, and was many. many, many years ago. I remember him saying it, remember smiling, but can't remember exactly what had happened... I guess that part wasn't important in the least at the time. And that was the only time he had ever initiated that beautiful phrase. Tonight... tonight it came from the heart unprovoked and just because.....the best kind ever. Now you can see why I had to hold back tears. And that BFF statement was the cherry on top! Tears are flowing just fine now... thanks. June 3, 2014 Matt is my YODA! It was a long day yesterday. I ran from 4am on and in the afternoon I took Matt to get his hair trimmed, shop a bit and then get pizza. I was worn out, ready for a nap. As we drive back to his apartment I asked him if it was OK if I just dropped him off - instead of walking him to the door and going in and then saying goodbye as usual. His face lit up. I smiled, "Dropping off or picking up?" (a line from Ghostbusters) and he laughed. As we pulled into his apartment complex he looked over at me and gleefully announced, "Just dropping off!" So I pulled up to his door and he hopped out of the Jeep as if he was on cloud 9. The ladies next door were sitting out on their front stoop and Matt turned toward them, flashed a HUGE smile and waved, glanced my direction and did the same. He opened his front door and again turned toward me, gave me a huge wave and smile and gleefully said, "Bye!". Such a small thing, walking to your own door all by yourself. No one over your shoulder, no one waiting for you to get out your keys. You walk to your door, open it and step in - all on your own and you never think twice about it... at least I didn't until I saw Matt's reaction to that simple independent act. Now I know. I know that I don't need to walk him to his door. I don't need to carry anything in or wait to get a hug before I leave. I can just pull up, get that hug while in my Jeep, and say my good byes. No need to walk him to his door - which has been just habit up until now. His reaction, his immense joy at walking his path and opening his door alone schooled me a bit about the simple joy of doing such things by one's self. Do you remember your first place? Do you remember that simple act and the feeling of empowerment that it brought? I had forgotten it until I saw it in Matt yesterday. Then it hit me and I remembered my own first place, the feel of my own key in the door, stepping into my own place. I get it. Matt reminds me of how it all felt to be newly independent and you can bet that I will be dropping him off more from now on. What a masterful teacher - so subtle in his lessons. Matt is my Yoda. June 2, 2014 200 Days – and going strong It’s been over 200 days since Matt moved to his own place. In that time the progress has been in giant leaps and bounds and I am convinced it’s because he is happy – as in pure joy happy. Matt is 28 years old, moderate to severely autistic and mostly non-verbal. He wasn’t supposed to be able to do all he has done in his life. He wasn’t supposed to, according to the team of doctors that examined and tested him for a week when he was just 2 years old. They recommended institutionalizing him right then and there and actually warned me of how difficult life would be when I said I would be taking him home. Autism was rare back then (1: 10,000) and services were basically non-existent. That was then… and look at him now. Matt stays at his apartment 6 out of 7 days each week. I go over only 2 times during that stretch – to take him for pizza or groceries or just hang-out. He spends his time alone with his hobbies and he cooks and he cleans and he maintains his special place – his sanctuary from the mainstream world – that he earned through the many years of practicing how to be independent and responsible. Although he is alone he doesn’t consider it as bad thing, as he prefers his time to himself. It allows his mind to work and his creativity to flow. Matt sees other people as enigmas wrapped in a riddle, and shrouded in mystery. Time to himself provides the relief from the fear of strangers, the uncomfortable feel of their presence, and the confusion of their speech. I ask him, “Are you lonely, Matt?” and he looks at me and smiles his biggest grin, replying, “No!” So here we are, 200 days into his independence and I look back at all he is capable of doing since. He walks to stores and purchases what he wants (CDs and books) and what he needs (food and clothes), and he is careful not to spend too much. He orders his own pizza. He walks his neighborhood and smiles and waves at his elderly neighbors. Sometimes, he even says “Hi”. He does his own laundry and neatly folds his clothes or hangs them up. He keeps his dishes washed, his floor vacuumed, and his bed made. He takes a shower every other day. He tries very hard to remember to brush his teeth, but that one is still difficult for him. I remind him as often as I can. He can do all these things because he had practiced. Preparing for independence and the move to his apartment, took over 10 years. One has to be seriously committed to the journey. Matt is interested in several activities, eager to go on hikes with me or spend time on adventures to his favorite historical sites or various college campuses. He’s comfortable with me – because he can be exactly who is with me. I teach and I listen. I laugh and can go for long periods just silently enjoying his presence. Our silence is as comfortable as our interactions. I know his non-verbal language. He knows my speech and gestures. Together we share a unique communication that passes between us smoothly, effortlessly. His confidence is at an all-time high right now. As we take the next step he is eager to show me that he can do it- all by himself - and I am joyful for him, even when my heart fears the worst. My doubts are always short lived though, because this is Matt after all, and Matt rises to the challenges before him as if each and every one of them would define him. For Matt, failure is not an option. It’s been a part of his personality – that desire to do it and to do it right - since he was a young child. That longing to be perfect has served him well in his quest toward independence. I keep in contact with him as he stretches those wings of freedom. Matt calls me 3 times a day – everyday. In the morning before I go to work, afternoon when I get home and in the evening before I go to bed. He calls when he goes for a walk and he calls when he gets home. These calls are our lifeline. I know he is OK, I know when something is bothering him or when he has a question. I have to extract it – each little piece of information, because he can’t fully offer up the words without help. It’s a process that has taken us years to perfect and we are still fine tuning it from time to time. My son’s success is also helping others, showing those who would doubt that an autistic young man with his level of severity could attempt independence that it really is possible . . . that it can be achieved. So while I am working with him to be all he can be, Matt is inspiring others to attempt the same thing – individual freedom. Freedom doesn’t come easy for a handicapped individual. It is hard fought for and hard won. But it’s possible. It takes time and an overpowering desire to see your child reach their goals and step into their full potential. It’s possible. Hopes and dreams can be realized. And the joy from the adventure, from watching a child rise to all those challenges life hands out, has been felt by both of us. Matt is not the only one feeling the power of pure joy. May 27, 2014 A few days ago I was chatting with Matt via phone and asked him, "Have you gone for any walks lately?" Now, that might not seem like a big deal. It may sound like a normal question - but it wasn't. Matt knew that we had practiced walking his neighborhood, walking to various stores and knew the routes. The deal was he was supposed to call me when he left and call me when he returned - it's a safety thing. I need to know if he is attempting these things. Knowing his desire to do all things as an independent adult and knowing he was anxious to try it, my question was to find out if he was walking - without letting me know, without the safety calls. "Um, yes." he replied. "I went to the pharmacy store a few days ago and I went to Food Lion yesterday." heart stopped. Matt had been out in the big bad world without notifying a soul. He had walked to the pharmacy and used a VISA gift card. He was unfamiliar with it and the lady at the register helped him. He bought a VT t-shirt at K-mart and the line at the checkout was very long and slow. A young man working at the jewelry counter took him over to his station and checked him out there so he would not have to wait. He told me all of this. The pharmacy was a big deal - as we had not gone there yet. It was a new place with new faces. He allowed a perfect stranger to help him. The adventure at K-mart was important because the young man he referred to was the same one we had talked to before. He knew Matt had autism and helped him as soon as he saw him. Both were great adventures, but he never called before hand or after he returned. He never said a word about either until I asked him specifically.... so we had a talk.... a very long talk. I told him I was proud of him for doing these things and also explained how he knew to call me and didn't. I again explained what could happen if I called him and he didn't answer his phone. He looked sad and guilty. I reinforced how proud I was of him for going. The only thing missing were the calls. After our discussion I knew Matt would call me the next time and sure enough, yesterday Matt went for a walk to K-mart again. He called me before he left and called me when he got back and I showered him with praise repeatedly. These new things are a wonderful step forward for Matt and a scarey time for me as I know how big and bad the world can be. I refuse to scare him, just teach him responsibility and skills to do what any independent young person can do. He is greeting cashiers now and he is allowing people to help him that he doesn't know - but we all know there are those out there that would take advantage of his innocence - thus the need for calls. Matt knows there are evil people, he knows there are dangers, he knows . . because we have discussed these things his whole life - but I don't wish to harp on them.... not right now anyway. Matt is doing well - his mom is proud - but also a wreck. May the good Lord watch out for my son and walk with him on all his adventures into the world. May I keep the faith that he will be fine. . . all by himself. May 23, 2014 Today is Friday - and we are NOT doing Friday night pizza and a movie. Matt is having his first ever Friday on his own (his idea... mostly...) and now Saturday will be pizza and a movie night - this week's movie? Pompeii. This change is a way of showing Matt that he can do any day with any schedule. Since we have always had Friday as a scheduled day for a particular routine I suggested it as the day to change. What's really cool about the idea is that Matt was very excited in trying it. imagine... a Friday.... at home.... doing what ever you wish..... Yep, this kid definitely has my genes! Saturday he will spend the night, Sunday off to hike the NR trail and then back to his place. The new routine, the number of days alone, I am always amazed at the ease in which he adjusts. He handles these little obstacles like they were nothing. Just yesterday we went to Foodlion to get his groceries - same cashier was there again and waved at him when we walked in. Matt smiled! After locating his regular 8 items, he went to her register. I went to a different one. He not only used his food card with no problem, he also spoke to the cashier and smiled. When I went to meet him after paying for my own, she looked at me and smiled, "He's doing great!" I smiled and nodded. Matt, having heard her remark, turned and smiled at her and said, "Yes, I am". All of these days of practice doing this or that, year after year, show that as he gets more comfortable he learns more interaction techniques and it's obvious now that he really enjoys the learning journey. I have loved our long journey too..... I'll update again soon. May 13, 2014 Looks like it's time to once again change the schedule. Matt wants to move to 6 nights / week with only 1 day at my house. Before you go wondering how momma will handle such a schedule let me fill you in on the details.... Matt will have 1 day he reserves as "company" day - and that day (Tuesday I think) will be the grocery day and shopping day and get organized day for the week. Any plans with going out with family will be reserved for that day. Friday will remain pizza and a movie with momma (yea!!!) and Saturday he will go back to his place. Matt will be walking to stores from his apartment .... alone .... and in doing so, will be spreading those wings of freedom. It will be a phone-linking type of situation as when he leaves his apartment he calls me. He calls me again when he gets home and then we will talk about any problems he perceived. This is where it gets tricky. Matt looks to me to see how to reply and I won't be there... he will have to figure out replies and answers to questions all on his own. We wouldn't do this if he had not been practicing. So... now it's time to test the wings, again. Each new thing he does is a bit nerve wracking for me - but I am the one pushing.... it's a mom thing. Am I scared ? Hell yes!!! Will we be doing this anyway? Hell yes!!! Matt faces his fears everyday, he works through some very emotionally frightening I will take a lesson from my courageous son and face my fears. I will send my sweet son into the world alone, for an hour here and an hour there, and I will hold my breath and tap my feet and stare at my phone and wait... wait for it to ring, for the sound of his voice as he excitedly tells me he is home again.... and then I will breathe, and in my next sentence, encourage him to do it again. This all starts this weekend.... fingers crossed. I wish I smoked or drank... it's times like these that scream "crutch needed!" May 6, 2014 When I talk to Matt on the phone at night I send him kisses - via kissy noises and then state "ha! I got you!". The past few nights after we talked I have not done that, no reason, just forgot. Our goodbyes have been a simple, "I love you". Evidently Matt misses those silly kissy noises because in speaking with him on the phone last night he all of a sudden made kissy noises, giggled and said, "HA! I got YOU!" I threw kisses right back. It became a kissing war...... It's funny, what we find endearing... kissy noises..... yep, he got me alright...... right in the heart..... April 24, 2014 With all that happened with the schematic and the MP3 I forgot to tell you all about the other cool thing that happened last night. As we pulled into the apartment complex we noticed 3 elderly neighbors sitting outside and watching us pull in. We had met them the day before. I told Matt they they were waiting to say "hi" and asked him to please say "Hi ladies" as he exited the jeep. Matt not only said "Hi Ladies!", but he did it with gusto and waved. As we got to his apartment door I heard one of the ladies tell the other 2, "He waved at ME!!"... Aww.....Sweet. April 23, 2014 And the OMGs just keep coming – as today Matt surprised me again. He opened the door and after our exchange of ‘hello’ went to finish getting ready to go. As I waited in his living room I noticed a new diagram / cartoon on his coffee table. Matt doesn’t leave his precious drawings out for the world to see – so this was meant for me… I knew it. I was going to pick it up, but then decided not to – maybe he wanted to hand it to me himself - and instead went to help him make his bed. As he prepped to leave he grabbed his headphones with his new MP3 player attached. “Does it have music on it?” I queried. After all, he had just gotten it the night before and Tom was going to put music on it on Thursday… which left me confused. “Yes” he said grinning. Something was up. “Really? Did it come with music, Matt?” “No, I did it all by myself!” stated with such an enormous amount of pride in his voice. He was standing straight and tall, smiling and excited – and this meant he had done something new and had been successful… I waited as he went to the living room where he retrieved the drawing and brought it to me. It was not a cartoon exactly and not a schematic, but actually a mix of both, on how to transfer his music to his new MP3 player from CDs. “Did it come with directions?” I asked – sure that it must have, but his response was a resounding “no”. “How did you learn to do this?” I said trying to dig just a bit deeper as my mind did not grasp what was right in front of my eyes. “I figured it out myself”. Yes he did. Matt had figured out how to transfer his music and had spent all the previous night doing exactly that. He had given me hints – hints that didn’t come clear until I held the paper in my hand. 1. There’s that way he has about showing me something important, getting close, almost a whisper to his excited voice, and this is how he was last night when he open his MP3 player and hurriedly showed me how to run it, the menu, the earphone plug and made it a special point to point out the USB port, commenting, “And here’s the little bitty USB!!”. I should have known, I really should have, but I didn’t. 2. The after I got home he called to tell me he was listening to music. It never occurred to me it was on his new MP3. 3. Then again, this morning’s call found him still listening to music, and excitedly so. I usually know these signs. I usually see them and go on the hunt for the underlying message – but I missed these. Maybe I was just tired (exhausted is closer to the truth). Maybe. But nevertheless, I missed the signs and signals and so today, when hit with the schematic and the music loaded I was ill prepared for the enormity of it. Matt didn’t make that schematic for himself…. He made it for me, because words are difficult, and pictures are worth a thousand of them anyway, he just drew a picture to explain the whole thing. Now the really big part – my own astonishment that he could do this task on his own without guidance. Matt is very bright – I know this. So why was I so surprised at his ingenious way of demonstrating his capabilities? Is there something inside me that still feels he is more helpless than I know him to be? Have I slipped into a stereotyped version of autism that suggests that one must also have a lower IQ is they can’t communicate? This is what really hit me hard because quite frankly I thought I was past that stuff – way past that stuff. So, knowing my son is very intelligent but communication challenged, why was I so surprised at his doing this one thing all by himself? I told Matt that he was brilliant, my youngest genius, and then I apologized to him for ever having any doubts, for being surprised at his abilities and then I thanked him for teaching me to be a better person. For teaching me that although I fight against the stereotypes constantly I was unaware that I still harbor a few myself and must work on ridding these from my unconscious thought. “Matt, you open my eyes, you put a mirror in front of me so I can see the reflection that you see. I do see you for the intelligent young man you are – I really do. I see it because you taught me how to see it. You are the best teacher ever.” Thank you, Matt. You keep me seeing what I need to see, show me what I have yet to learn, and astound me on a daily basis – and I love you for it. April 11, 2014 On Tuesday I went to Matt's, picked him up and took him shopping for groceries. Matt didn't speak much on the way, shopped alone at the store, and didn't say much on the way back. I helped him in with his groceries and asked him if he wanted me to hang out a while - the answer was no. Now, I was having a weak day and the lack of interaction was getting to me. As I said good bye at the door I teared up a little, a few tears escaped and I left thinking, "Damn it, I wish I hadn't let him see me cry." That night I got a phone call. Me: "Hi Matt". Matt: "Oh, .... I was worried!" Me: "Why?" Matt: "Because you were sad." I assured him I was fine, but when I went over on Wed we talked about it. I told him he hurt my feelings to be just a chauffeur - just his driver. As we spoke, he sat forward, listening intently. Matt: "Oh, I know! On Tuesdays we will shop together and you should stay a little while after you help me put my groceries away!" Me: "That's a great idea!" Where I had felt bad about him seeing my tears I now see that it was the best thing that could've happened. Matt has a hard time figuring out the social aspects of communication. Having him see that certain actions can hurt he thought about it and figured out how to be more concerned about those that spend time with him. He is a great guy, seems happy all the time, and he tends to blow people off as unimportant at times - something he doesn't realize he is doing. Now we have actually talked about it he may look a little deeper and try to socialize a bit more. Living on his own does not mean he gets to be self-absorbed, and he sees that now. I am looking forward to Tuesday to see if he follows through..... April 5, 2014 Matt is initiating conversation more, and his speech is better. This is not only my observation, but Tom's as well. With the confidence he has in himself he is growing in ability - from cooking, and branching out on new activities, to speech. Matt has always had a road-block in his speech with half or more of each phrase being "dabba, dabba, dabba" as he tries to form the next set of words. The "dabba, dabbas" are getting fewer. He clears his throat when he starts to get to that point, takes a breath, and tries the sentence again. This is not something somebody taught him - but his own way to break the cycle. How cool is that? Matt talks more, and we are now blessed with even an occasional, real, back-and-forth conversation - which being a newbie at this, always throws me off a bit. I find myself getting addicted to his voice. I want more. I want to know him as best I can and when he shares a thought with me it's like Christmas has come again. Parents often times think that once their child is grown into a young adult (17,18 . . . 22) that they are where they will be in their ability for the rest of their life. I am putting a nail into the coffin of that one. It's just another autism myth that must be broken. Learning continues . . . and I suspect for my own son, that it will continue on for his entire life. What will Matt be like next year? Or in a decade from now, near 40 years old? I can only hope that he will continue on his own path, seeking to overcome the things he wishes to change about himself and that his self confidence continues to rise. There's no telling just what he can do . . ever. Meanwhile, I am enjoying the sound of his voice and a glimpse into his thoughts - a little more with each passing day. From silence at 2 years old, to a word here in there at 5 years old, to a sentence a day at 10 years old, to a few sentences a day at 17 years old, to several in a row at 22 years old, to several sentences, more than once a day at 25 years old, to a real conversation - short, but real at 28 years old..... Matt, oh my amazing sweet child, thank you for giving me the opportunity to get to know you a little better every year. April 4, 2014 The transition continues as Matt's schedule changes this weekend to 5 days a week, Sun - Thurs. I get to start having him home on Friday and Saturday!! Tuesdays are scheduled for shopping and Wed - "Survivor" at Matt's place!! Woohoo! The schedule is anticipated positively by all parties - including Mr. Awesome. It also helps with my schedule, and with the spring warm weather goal of walking the neighborhood to meet his new neighbors. The neighbors have been anxiously waiting.... it's not everyday they get to meet a "famous" guy (his newspaper pictures is posted in the office). Let the next step begin!! Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt

  • Matt's Latest Adventures

    Matt meets Vice-President, Joe Biden! Yep, we went to Spiller Elementary School in Wytheville, Virginia to hear and see Vice President Joe Biden. After waiting 4 hours - on our feet - Joe arrived. During the speech Matt took picture after picture. Then at the end of the speech, VP Biden stayed to shake hands and meet the people. Not only did Joe shake Matt's hand - he signed Matt's t-shirt. Matt is a big fan of Obama / Biden and this event brought more happiness than anyone realizes. Thanks Joe, for putting that beautiful smile on my son's face today! Joe signed Matt's t-shirt. We framed it and it is now hanging in Matt's bedroom. He is so excited - what a great experience! Welcome Joe! August 14, 2012 - the visit to Wytheville, Virginia. Vice-President Joe Biden Alicia Ring (classmate from high school) was there also - too cool! The event of the summer - for Matt! Matt - on Google Images of the event The signed t-shirt! From left to right: Matt, Tom and I Global Visitors Honored as one of the - TOP 30 AUTISM BLOGS In bookstores Dec. 16, 2014 Purchase a signed-copy direct from the author for $22.95 (plus tax and shipping) Upcoming Events Quotes Recent Blog Entries Recent Photos Newest Members Autism and the World According to Matt

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