A Road Less Traveled

The young autistic child seems captive to another world. Matt’s first teachers assumed this as Matt appeared withdrawn, in another world, and they assumed he wasn’t learning. I was guilty of such thoughts myself about "a world of his own" too for a short while. It’s what one is told and it’s easy to believe. Fortunately, it’s not true. Matt was in the dark, in a fearful place, but he was still in my world and I in his. This story is about the enlightenment that comes when those around you also see that our world and the autistic’s world is one and the same.

Matt learned his alphabet very differently than you or I. First, instead of reciting the alphabet song, Matt shadow danced. He created shadows using his body and the shadows that were cast looked like each letter. He always started with A and could not stop – for anything – until he had reached the letter Z. He only did his dance when he was alone, for the simple pleasure of expressing new knowledge.

At school, no one paid Matt much attention. He hid under tables or walked the perimeter of the classroom, but he never interacted during the lessons. His teachers thought it best to just let him be. But Matt fooled them all. He not only heard each lesson, he was able to express what he learned in a unique, artistic manner. Once I let Matt know how beautiful his shadows were through praise and requests for more, he became confident enough to begin showing them to me upon request. I brought his shadow dance to the attention of his teachers. They observed his creative display of the alphabet and were amazed. It was an eye opening experience for them. They soon realized Matt was not in another world, he was in their world, albeit in the shadows, but he was there - and he was learning. This provided a challenge to the teachers to be creative themselves. They needed to test Matt in order to grade his knowledge level. In order to get an accurate estimate of his ability they would need to think in very creative ways themselves. After viewing the beauty and creativity of the shadow dance his teachers understood that Matt was in essence, throwing down the gauntlet for them to think outside the box. The teachers rose to the occasion and I am very proud of each one for meeting the challenge with such enthusiasm.

The shadow dance began to disappear as Matt began to write. When he finally wrote the alphabet out letter by letter the finished product was perfect. But watching him write it out was the fun part. The rest of us neurotypical individuals learn to read and write left to right on a page. We’re not born knowing which direction to read and write – we learn it. Matt had not practiced much in the writing process but he was learning the alphabet. His first few weeks actually writing the letters showed me quite clearly that we think in an order that is learned. For Matt, learning was an alternate route – a destination that could be arrived at by various roads. Matt decided to start with the letter Z on the right side of the page and wrote each of the letters, in reverse order, right to left. The finished product was identical to the line of consecutive letters of the alphabet. If you hadn’t seen him actually write it you would have no idea that the task had been completed in reverse.

Teaching the autistic child is an adventure in creativity. You get to witness the unique ways in which the human mind can take-in and process new information. In addition, you get to use the creative parts of your own mind to help meet the needs of a child. In doing so, we get to venture down the road less traveled. Our journey allows us to see and experience a greater world - a world that both the autistic individual and the non-autistic individual can share.

Independence Begins

This story is the follow-up on Matt taking his first unaccompanied stroll. Matt is in North Carolina with my husband Tom (where Tom works) and I am at home in Virginia. Yesterday was the practice walk. Tom gave Matt his own key and identification card and a key to the mailbox. He also gave Matt a note for his wallet which provided all the emergency information. Matt put it in his wallet without question. Tom and Matt took a practice stroll together earlier in the day, turning left out of the apartment and walking to the mailbox. From the mailbox they took a path that passed one of the swimming pools and circled around toward the front of the massive complex of apartments and straight toward the weight-room. Matt practiced using his new identification pass to unlock the door and they scoped out the various equipment. Shortly after, they strode back to their apartment and Matt got to use his entry key. No problems.

Later that afternoon Matt decided it was time for his own walk. He left the building and unexpectedly turned right. Matt is a creature a habit. Each time he has been out so far has been with Tom and they have always taken the exact same route. Both Tom and I expected Matt would continue this same routine. Tom watched from a safe distance as Matt disappeared around the next corner. He never looked back.

He walked with confidence and purpose. His gait was quick. Matt called me. “Hi mama!” he exclaimed. “Hi Matt!” I exclaimed back. “Well, I’m on my walk!” I could hear the excitement in his voice. This was his time. “Great!” I said, “I’ll talk to you later”. “O.K, bye!” he returned. Matt was alone, outside, in an unfamiliar town, taking a leisurely, yet purposeful stroll around his neighborhood. I looked at the clock. I paced. I played some computer solitaire and I thought about my son. The phone rang again. “Hi mama!” Matt exclaimed into my ear. “Hi Matt. Where are you now?” I asked. “I’m back at the apartment” he replied. Really? So soon? I looked at the clock again. Only four minutes had passed. He told me he had gone all the way around the complex. I could hear in his voice how proud he was of himself.

Tom called soon after. He told me how he had watched from the window as Matt turned right at the sidewalk. He revealed how anxious he was when Matt disappeared around the corner - out of sight. I knew Tom must have been holding his breath. I told him I had timed him and it had only been 4 minutes. He told me he had timed him from when he left the building and it actually had been 6. We both marveled at how fast he lapped the complex.

Today, Tom is working. I asked Matt to please not go for his walk until after 4pm. Routines are needed and at 4pm each day I should be home for his call. The closer it got to 4pm the more anxious I got, waiting for his call, waiting to hear he was on his walk. Finally the phone rang close to 4:30pm. “Hi mama!” Matt said. “Hi Matt, are you on your walk?” I asked. “Uh, no. I already been.” Matt had gone on his walk – and forgot to call me first. We talked about his path, where he decided to go and it turned out to be the same as usual – even turning left from the apartment as he had done many times before. He had decided to stick to old routines. He had even gone to the weight room, but someone was there and he left almost immediately. Matt is wary of strangers (thank God!).

So, his first independent walk went well. He will walk almost every day and at sometime in the future, perhaps next week, perhaps next month, Matt will choose a new path and venture out. He’ll slow down and take his time as he investigates the world without a hovering parent. Matt has shopped in stores alone, he has stayed at home alone and now he ventures out alone. Someday we will move forward again and Matt will take a bus to a destination of his choosing. That used to feel a million miles away. Now it feels as if it could happen tomorrow.

Moving Forward

Tom got a new assignment in Durham – close to home. As part of his job package he gets a fancy-dancy apartment. Matt was ready for the new adventure and happily packed for his new destination.

After a week, Tom and Matt returned home for the weekend and all was normal again – but just for the weekend. They left again and this time I returned with them for a short vacation between semesters.

I got the grand tour of their new bachelor pad. No, Tom is not the bachelor - Matt is. The apartment had its own washer-dryer, dishwasher, internet, cable, and furnished with all new pieces; couch, chair, table, bed, dresser and even linens. It had a weight room, 2 pools and 2 tennis courts. For all its amenities it lacked a touch of home. So, after Tom left for work Matt and I decorated. We hung pictures, organized closets and moved the furniture. Matt put in the wall hangers, decided which pictures to hang where and organized all his stuff. I showed him how to use the dishwasher and gave him this chore. We all explored the apartment complex and the shopping district and Matt was excited to find all his regular hangouts.

Now comes the hard part – giving him independence.

I’m back home in Virginia, Tom is back to work and Matt is the king of his new domain. He is learning how to run the washer and dryer so he can do his own laundry. He is using the phone everyday to call his mother (and I anxiously await his calls each afternoon). But now it is time to move forward. Matt will be going for walks – by himself. His first practice is tomorrow afternoon. Tom will be giving Matt his own key and pass card. He’ll walk alone on a path around the apartments and he’ll go to the weight room using his pass card. All the while Tom will be watching – from a discrete distance. Matt has been asked to call me when he leaves and call me upon his return. Our instructions were fairly simple: take your cell phone, key, pass card and MP3 player and enjoy your walk. For added safety I had Tom write a note for Matt to carry in his pocket. The note is pretty straight-forward – Name, address, emergency call numbers and that Matt is autistic.

It’s a hard thing to do – letting go. For parents of an autistic child, or any handicapped child for that matter, it is especially difficult. You have to fight with yourself. Part of me says, “Protect him at any cost” and another part shouts back, “What kind of life is that?” The argument continues between the warring factions of my brain, “He could get hurt, he could get lost, he could run into unscrupulous people” is countered with “He’s a man and needs to find his place. Give him some credit for his intelligence – he won’t get lost. Everyone risks the unknown – let go and give him a chance”. It’s very difficult to be a parent of an autistic son as the mind battles are almost constant.

But I listen to my son. I listen to his dreams and his desires for independence and I want him to always feel supported and loved. Matt really is a man – not a child. We want him to one day be on his own to enjoy life as he sees fit. So, we practice. We practice chores, we practice phone calls, we practice eating habits and personal hygiene and now we are about to embark on practicing the freedom of movement.

Tom will work the day after Matt’s first secured practice-walk. Matt will call me (excitedly, I’m sure) as he embarks on his first unaccompanied walk and activity. He will know real freedom and he will enjoy himself tremendously. He’ll explore the area and visit the weight-room. He’ll take his time. And when he returns back to the apartment he will call me and tell me all about his wonderful new daily activity – and I will fight back tears of joy as I listen to his voice - his deep grown-up voice.

Most of you know the old saying Life Is What You Make It. We are trying, struggling, fighting, and pushing ourselves to make Matt’s life as he would want it – to be totally independent. Each step may seem so small and yet each is a giant leap of faith. It would be much easier to just take care of him – to treat him as a child. Matt’s autism makes him appear as a child in my mind but that’s just because he is my child. I know that Matt is all grown-up. He looks like a man. He wants to feel like a man. And so I push myself to let go – slowly. Practice not only gives Matt self confidence and a safety net, it gives me the time I need to adjust to the simple fact that Matt needs his freedom.

In each precarious step along the way, we are all finding the strength we need to keep moving forward.

In His Own Words

Today’s blog is written by my son Matt – no, really! I found one of his school projects and in reading it over thought, “Wow – this is Matt in his own words”. I thought I would share this with you. The descriptions of the pages are mine, but the words are Matt’s words. These words tell more about how he felt about himself and the world around him better than I. I left in the misspellings and put all the commas and dashes in just as he has them. So here goes . . .

In May of 2001 Matt was required to do a project – on himself. The cover page is full of drawings of the things he liked most that year; the Titanic, Trains (of course), the Sears Tower (tallest building), the atomic bomb explosion (history) and Johnny Bravo (a cartoon character).

His table of contents lists the categories he had to cover;

1. a photograph of himself – which was a picture of him and me at the river

2. vital data

3. My people

4. My heritage

5. Who am I?

6. What I do

7. Favorite things

8. Changing

9. Steps to change

10. Tomorrow.

Vital Data

Date of birth: I was born Jan 14, 1986. Age: My age is 15. General Description of Myself: Height: 5 foot 9 inches tall, weight: 160 pounds, hair – short + brown, eyes – bule, nice, gentle, - man, I’m pretty. Little feet, little muscles but very smart.

My People

The people that are important to me are my brothers, Chris + Jacob, and my sister, Sarah. My Mama and Papa are also important. My Ms. Austin is special and my best friend Kevin. Chris is graduating. Jacob loves magic cards. Kevin is in my class! Ms. Austin is sweet! Sarah will be driving! My daddy is nuts! My Mama is crazy! (these last 2 were meant to be funny – but hmmm, it could be true . . .)

My Heritage

This is a family tree that I helped him draw with all the members from both sides of our Brady-Bunch type marriage.

Who am I? (Matt was suppose to describe how he saw his personality)

Matthew is an 8th grader. I don’t like homework, But I like high school and my friends. I am autistic. I see and do things different than other people. I work slower than most people. I like to draw anything. Drawing helps me remember facts. I can’t look at people because I feel uncomfortable. I don’t make friends easy. Don’t like change + food texturies bother me. Mama takes care of me at home, Ms. Austin helps me out at school.

What I do (Areas where Matt feels good about who he is)

I like to play sports like golf and soccer. I was at Special Olympics for 5 years. I won 13 blue ribbons. I did 3 science projects and won 2 grand prize, and 1 red ribbon. I like Titanic movie and work on a model the ship. I best thing is drawing. I like to draw carton characters. My favorite place is the Field Museum of Natural History because I like dinosaurs especially T-rex, Brachiosaurus.

My Favorite Things

Music – I like to sing with my favorite songs.

Motherless Child – by Eric Clapton

I Don’t Want Miss a Thing – by Aerosmith

Touch of Grey – Grateful Dead

I’m Eighteen – Creed

T.V. – these shows make me laugh

Three Stooges – I like Curly the best, he’s funny + makes funny noises

Cartoon Cartoon Fridays – Ed, Edd, n’ Eddie, Powerpuff Girls, Johnny Bravo, Dexter’s Lab, Cow and Chicken, Courage the Cowardly Dog, Mike, Lu and Og and I am Weasel

Movies – I like comedies because they make me laugh

Jackie Chan’s Who Am I?, Wayne’s World, Blues Brothers 2000, + Mousehunt.

Sports: I like to watch all kinds of sports. I want my teams to win.

Baseball, Basketball, Golf, Hockey, Soccer, Bowling, and Tennis

Hobbies: I like these things because they make me feel good. Things I like to do -

Drawing, playing games, listen to the music, ride mt scooter, watching TV, eat at McDonald’s

Changing ( Matt was to describe how he would like to change within 5 years)

I would like to graduate with good grades and lots of friends. My goal is to go to Radford University. I need to work on homework and big labs. I want to college by myself. I want to learn to drive and be a man. I want to be an artist after my finish college. I want to be a cartoonist. I need a good job to make money to support myself + so my mom won’t worry about me.

Steps for Change

I need to feel comfortable with people so I can study at Radford University. I need to talk to people + make new friends. I need to more active in school + community. I need to slow down + make eye contact. I need to learn to talk to people.

Tomorrow. ( 20 years later and Matt is to write a letter to describe what his life is like)

Dear Kevin,

I graduated from high school with you. I’ll so graduate Radford University. I got my degree in Art + Science. I have a new art studio in Wytheville. I like drawing cartoons all day and getting pay. I sell my art in Chicago. I like to travel by car. It’s a pretty trip my family in Rockford, Ill. I’m doing so well and business. I plan to make my studio bigger. If you need help let me know. You’re my best friend. Matt

Well, that’s it. If you read between the lines (as I do) then you can see a self awareness emerging in Matt. He was grappling with some very tough emotions. He wanted so much to be like others his age. Matt was 15 years old. He felt different and alone. He had dreams and set goals. As I read his words my heart ached all over again. Oh, if I could have only made it just a bit easier for him . . .

These words, Matt’s words, were written 9 years ago when Matt was still a child. Things have changed quit a bit since then. Matt has eye-contact now. He speaks more easily with others and he likes meeting new people. His choice in colleges has changed over the years from RU to Virginia Tech. He knows how to drive a car (he just doesn’t drive). He goes to college (it’s just part-time). So even if he hasn’t conquered all those goals – yet – we know he will one day.

We working on those dreams, but we move slow in the world of autism. Eventually, we’ll get him to where he needs to be.

Mother's Day Moments

Another Mother’s day has come and gone. The kids have been kind to me. I got flowers and cards and saw each one at some point over the weekend. As I think back about all those previous Mother’s Day tokens of affection I think of the gifts and cards and dinners and phone calls. It’s nice having a day that reminds the offspring to call their mother.

This year Tom, Matt and I went out to buy flowers at my favorite store – Lowe’s. As we strolled down one plant –lined aisle after another I found myself ooing and awing at the grasses, the bushes, and the bedding plants. I picked out an especially pretty rhododendron with deep pink flowers. Matt watched Tom pick the healthiest of plants and then lift it onto a cart. Matt decided he would buy me flowers also. “Do you want me to pick them out or do you want to do it?” I asked. Matt has a history of stressing out when picking out gifts, preferring the receiver choose for him. Yet, for the past several years Matt has really gotten into choosing for himself. “I’ll do it.” He replied confidently. I walked off in the opposite direction to give him time to think and decide on his own.

I was admiring the ornamental grasses when Matt returned with an entire tray of plants. The petunias I recognized right away. Petunias are Tom’s favorite flower and we buy them each spring for our deck. The others were zinnias – a flower I have never had in a garden. These were red and white and looked like sunbursts. “Oh, these are beautiful, thanks Matt”. His shoulders went back a bit, his head raised higher – Matt was obviously proud of his selection.

I transplanted the flowers into pots that afternoon. I thought about Matt’s choice and admired my new zinnias. But something was bothering me. Matt always drew me a picture for Mother’s Day. For as long as I can remember there has been a drawing – usually a cartoon of some sort – that has accompanied the card from Matt. He always writes “happy mother’s day”, the date and a “love Matt” as his signature on each and every drawing he has given me. I have collected them for almost 20 years and now I was receiving flowers instead. Don’t get me wrong, I love my flowers, I love that Matt picked them out, and I especially love that they were a flower I had never had before, but it just didn’t feel like Mother’s Day without a cartoon from Matt.

Months earlier I had asked Matt what he was going to draw for me for this year’s Mother’s Day. It came up as he was planning his summer events on the calendar. He looked at me and shrugged his shoulders – his way of asking me for a hint. I looked up and on his wall he has a picture he took in his photography course of one of our cats. “I would like a drawing of Toulouse”. He smiled and gave me a thumbs-up. We continued to talk about the coming summer and plans for each special day up to August. Now Mother’s Day had arrived and there was no drawing. Had Matt forgotten? Really? Matt never forgets anything like that. I was a bit disquieted by the whole thing. Of course, I never let on to my curiosity or my disappointment and kept it to myself all day.

The weekend got busier and the other kids either stopped by or called. We all had a wonderful time just enjoying each other’s company. Before I knew it, it was getting dark and I was wearing down. Exhausted, I decided to hit the hay early – around 9:30pm. I stopped by Matt’s room on my way to bed to give him a kiss goodnight. He met me at the door. I was so tired that I didn’t even notice he had something behind his back. He gave me a wonderfully strong hug and immediately handed me the paper he had hidden behind him. It was a cartoon drawing, completely colored, of Toulouse. Written on the bottom was “happy mother’s day”, the date, and just below it, “love, Matt”. Best gift of the day.

Adventures in SOLs

First, let me say I hate standardized testing. It hasn’t turned out to be the cure-all for education that people envisioned. In Virginia, the standardized tests are called SOLs – I kid you not. No, SOL does not mean what you think. It stands for Standards of Learning. Not one good teacher actually thinks they are helpful – mostly they are considered to be a cruel slap in the face to true learning. Students only learn how to take a standardized test – not think. They must be taught only what is on the test and when they get to college they lack study skills and desire to learn. Students feel the instructor should only present them with what’s going to be on the exam. So in other words, students are taught to memorize certain facts which are then easily discarded as soon as the test is over. Learning to actually think has now become the sole job of higher education.

Having said my piece about the sad content of SOLs I will now tell you about Matt’s adventures in standardized testing. They start testing early on – in elementary school. Matt took each standardized test along with his classmates. They made him a wreck. He couldn’t sleep and cried and begged not to go to school. Yet, year after tortuous year he took and passed each exam. Matt has a great memory for facts. SOLs do not require any real critical thinking skills – just the ability to memorize and Matt could memorize just fine. Matt did well in each subject; Math, History, Science, Reading. English was Matt’s worst subject. Of course! He's autistic and autism is a communication disorder. English is how we communicate. It was fully expected that he would have difficulty in written communication. Matt’s writing skills improved each year, but let’s face it, he wasn’t a great writer – he’s autistic. He never saw the need for the little words; it, is, of, at, the, etc. Leaving out the little “useless” words always affected his grade. The only class Matt ever took in High School where he didn’t make an “A” was English – he got a “B”. He could read, he could do his homework and he could write- albeit, not as perfect as we would like, but well enough to make a point and demonstrate knowledge.

To graduate with a regular diploma, Matt needed to pass all of his SOLs – including English. The English SOL has 2 parts; one covers the parts of speech, spelling and grammar – which is multiple-choice, and the other one covers actual writing skills – students are given a writing-prompt and instructed to write several paragraphs on the subject. Matt flew through the multiple choice with no problems. He made an excellent score on that half of the test. His writing, however, was not very good (those pesky little useless words!). The overall score is an average of the two tests together. A student needs a 400 to pass. Matt received a score of 378. This was in his junior year of high school. He could re-take the test again in his senior year.

You can bet it was an intense meeting of the minds that spring as we came together for Matt’s last IEP. Some were convinced he would not pass and started throwing around the idea of a Certificate of Attendance in lieu of a Regular Diploma – it didn’t go over well with me. I immediately took that idea off the table. Matt had not worked that hard, received all those excellent grades, repeatedly made the honor-roll year after year to end up with a lousy Certificate. Once that was cleared up we began to construct an IEP that focused heavily on Matt’s writing skills.

Test time came all too soon in the fall of his senior year. His score for his second attempt was 398 – Damn! He missed passing by 2 lousy points. This was really beginning to get under my skin. How could they prevent my son from walking across that graduation stage simply because his writing skills – his communication skills – are slightly diminished because of his disability? It’s like saying that because he is autistic, he can’t graduate. I called the ACLU.

The ACLU works to stop such injustices. They took up the case and began giving me ideas on how to get the SOL for writing waived. The Virginia SOLs have a back-up for English. Students can submit a portfolio of their writing – from several years of classes – and be scored that way. Oops. Who kept writing samples for the last few years? Where was this rule when we were discussing Matt’s performance at the IEP? A portfolio was a great idea, but we didn’t have the required materials for the year. It was now spring and graduation was looming. Matt had one more opportunity to take and pass the writing portion and the test date was almost upon us.

I was a wreck. The Virginia Department of Education was holding their breath, Matt’s teachers were pushing him hard, and his aide was completely stressed out. The ACLU was waiting for the results – would we be going to court to fight this requirement on the behalf of autistic children? Matt was also a wreck. He begged not to go to school. I told him this was the last time I would ever make him take this exam. I told him that I knew, his daddy knew, and his brothers and sister knew that he was intelligent and wonderful and no test in the world would ever change how we felt. Matt grudgingly took the English SOL writing section for the last time.

We had to wait a month for the results. Graduation was just weeks away and we were on pins and needles. Then the news came – both written in his notebook and by phone; Matt had gotten a score of exactly 400! Talk about a celebration! Oh my, what a relief. There may not have been dancing in the streets, but there sure was a lot of dancing (and jumping and high-fives) at our house! His teachers smiled again, his aide could breathe again, the ACLU closed the file and I imagine the entire Virginia Department of Education probably went out to slam back a few to celebrate their good fortune.

The following weeks were filled with awards banquets and Matt was honored at each. Academic Letter, Honor-Roll, Top 10 Percent (number 4 in his class with a GPA = 3.81), Who’s Who Among High School Students and the National Honor Society. It was one celebration after another.

Finally, the long anticipated graduation day arrived. On a hot spring morning our family gathered together to witness the impossible. My son, my beautiful baby boy who I was told would never be able to do anything, who I should put in a home because autism would be more than I or my family could handle, marched into the packed gymnasium along with his classmates. He sat next to his best friend and we could see them smiling and conversing. Then, his entire row stood up and marched toward the stage. I held my breath as I watched, tears in my eyes, as my son, now a young man, walked toward the stage, head held high, honor-cords around his neck, stepped on stage and shook hands with the principal as his name was read.

And there, for the entire world to witness, a true high school diploma was placed in his hands.

Signs of Progress

The Kluge center for Children in Charlottesville, Virginia scheduled Matt for periodic visits. They were scheduled about a year apart and the purpose of these visits was to track Matt’s progress in all areas included in a skills check-list for age appropriate skills and behaviors. Matt was still not talking on his first visit back after his initial diagnosis the year before. The therapist tried to get Matt to speak. He did not comply. His only language at that time consisted of “no”, “yes”, “water”, “drink” – Matt was now 4 years old. The window for speech ability was going to close within the next year. His therapist was very concerned.

Being able to say a few words is not the same as having speech. Speech is a form of communication and Matt’s communication was still mostly grunts, moans and body language. It was time to put in a back-up plan just in case the next year he remained at his present level of talking. The therapist instructed me on how to use sign-language and had me practice. Signing provided me a new way to communicate and I embraced it. I practice several signs and used them on Matt every day. He didn’t like watching my hands and had no fascination with my gestures. I slowly realized that sign-language was not going to work. Still, I kept at it. I wanted to talk to my son and I really didn’t care if it was through signing or speech. My favorite sign, and the one I used most often, was the one for “I love you”. You extend your thumb, index finger and pinky finger upward while keeping the ring and middle finger bent. Each night at bedtime I kissed Matt and said “I love you” both in words and in signing. I found it difficult to tell whether or not he made the connection. I found out later that he had been watching, listening and learning all along.

Although Matt was not doing age appropriate behaviors, most of his skills were higher than average for his age. He had a few skills that were deceptively low-level, like not knowing how to use a key in a lock. You have to look at the whole grading system to understand why he failed. You see, the lock and key test was sprung on him during his Kluge Center visit. The occupational therapist gave him a key and set the locked box in front of him. She then began timing him. He had never even seen a lock or a key, and he had no curiosity about what was in the box. After several minutes she secretively marked her grade sheet. “Did he fail?” I asked. “Well, he didn’t even attempt to open the box and never showed any curiosity.” She stated back. “Matt can do that trick” I countered, “give me the key.” She politely handed me the key, placating the hysterical parent. “Matt, watch this!” I said directly to Matt as I sat on the floor beside him. Matt watched as I put the key in the hole, turned, open the lock, opened the latch and open the box. I picked up his toy car he had brought with him and placed it in the box. I shut the lid, flipped down the latch, and put the lock back on. “Listen” I said as I clamped the lock down. We listened. It produced an audible “click”. Matt watched the whole sequence. His car was now in that box and the box was locked. I handed him the key. Matt put the key in the hole, turned it, open the lock and removed it, flipped the latch and opened the box to reveal his beloved possession still intact. A wonderful smile lit up his face. He was genuinely relieved and now fascinated by the lock and key. “See?” I said to the therapist. She looked at me as if I had just spit on her. “He was not able to do it without you showing him . . . “ she trailed off. She never changed her grade sheet. Matt had low scores from her and high scores from each of the other 3 therapists.

This first visit back had really gotten under my skin. I was ready to use the sign language, but I was unwilling to accept that Matt lacked thinking skills. I became aware that people would judge my son on his ability using particular tests that were unintentionally misleading. People would always use his diagnosis to assume Matt was mentally incapable of learning – that is unless I made it a point to teach them differently.

It was during this same year that Matt learned the alphabet without anyone knowing. I practiced the alphabet on the glass of the back door – writing in the frost. The first few weeks Matt just scraped frost onto his fingers, fascinated by the cold of the door. At school the class went over the alphabet each morning. Matt would dive under a table and put his hands to his ears as everyone did the alphabet together. His teachers assumed Matt was off in his own little world, refusing to pay attention. His teachers soon found they had made a false assumption. Matt was listening and using his split-second glances at the board to connect the letter with its name. Matt was under the table yes, but he was learning.

Within weeks Matt was writing the alphabet in the frost and writing the alphabet on paper in school. His repertoire of words seemed to jump from 4 to 20 - 30 in no time at all. Matt’s brain was healing and he was beginning to show us signs that he was capable of making connections again, both figuratively and literally. He began to speak more and more. I was finally sure – absolutely positive – that he would eventually use sentences to communicate and so, I stopped using sign-language – that is except for “I love you”.

To this day, 20 years later, we give the sign for “I love you” whenever we part, whenever we say good-bye, and sometimes just for the heck of it. It has become a symbol with a much deeper meaning. Each of our children knows the sign and has used it, but for Tom, Matt and I, it is part of our everyday language and behavior.

A few days ago we again hiked another section of the New River Trail. Each of us had in earbuds listening to our own musical preferences on our MP3 players. I was out ahead and looked back to find Tom taking pictures – he was quite a ways back. Matt looked at me, then at Tom, then back to me and shrugged his shoulders. I held my hand up indicating stop and wait – Matt stopped. He looked again at Tom and back to me with a big smile and flashed me an “I love you”.

Not a word needed to be spoken.

Be wary of snake-oil

First let me say that I am sorry for not writing as often. It's the end of the school semester and as a teacher I have been very busy. I hope to get back to a daily story soon. Thanks for staying with me.

Now on to the next topic - Countering the snake-oil sales for autism treatments with your own expertise.

How do you treat autism? There are so many treatments out there that it’s hard to tell which ones are snake oil and which ones may do some good. All the drugs have nasty side effects and they don’t treat autism – just symptoms. I personally can’t give Matt drugs. I worry they could make him ill in other areas and I just am not willing to risk his overall health on a “maybe”. I have looked at most of the treatments online and notice they all have a budget-killing price tag and most are preying on the fears and confusion of parents. The majority of these treatments have not been tested – making the autistic child a guinea pig. They have no real research to back them – yet many claim they have and are hoping you won’t try finding the non-existent study. I’m not willing to try them. It feels like throwing money into the wind – for hope of a cure. Worse yet, it feels like society is telling me my son is unacceptable for who he is. That in itself is unacceptable to me.

Autism has no cure. The best thing I did was accept that simple reality. Once accepted, I could focus on all the things I wanted for my son that could make his life more enjoyable and help him reach his full potential. It starts with becoming an expert on your own autistic child. How does one become an expert? Simply be the best parent you can be and the title of expert will soon be yours.

I am not an expert in the treatment arena or even in autism as a whole. I am an expert on Matt and Matt’s autism. This is what I recommend to others. Know your child – be an expert on your child’s autism. Spend lots of time observing, playing, interacting and get your child to speech therapy early on.

Once you have accepted that autism has no cure you enter the “expert-in-training” phase. Once you are the expert of your own child with autism then you can more readily decide what steps you wish to take to advance areas that your child needs help with. I was just like you - overwhelmed at first, trying to decide what steps to take and how to get things done that could improve the life of my son. It was no easy task – it still isn’t. Speech was my main concern and once that was in the works I could focus on several other behaviors and problem areas. In order to do that, I needed to know my son better than anyone. That is where I broke ranks with the medical world.

I watched Matt, I listen to Matt, I used trial and error to find ways to help Matt, and I never gave up. The opinions of doctors, therapists and other professionals were weighed against what I knew about Matt. Unbelievably, most of what they “knew” – and I’m talking an overwhelming majority here – was wrong.

How do I know? I know because I am an expert on Matt. I watch. Actually, I’m always watching. I call it my continual observational phase of being an expert. It’s “mom” mode to the extreme. I look for facial expressions, body language - even his gait when we are walking tells me volumes about what he is feeling. I watch his reactions to new people and situations and to people he knows and situations that are routine. I watch for signs of discomfort and pain. I watch.

When he was a young child in a regular classroom there were days when he came home from school depressed or anxious. I talked with teachers and aides. If I couldn’t figure out the problem, then I went to school and went to each class – as an observer. I always figured it out. Sometimes it took a great deal of perseverance to do that. In the end, it was exactly what was needed.

I also listen. I listen for tell-tale signs of confusion, anger, depression, and joy. I listen to him converse with himself in his room (Matt likes to think aloud – a lot) and I listen to him sing. I listen to the tone of his voice and the emotional inflections injected into his speech. I listen.

I use trial and error to find out how to conquer the task at hand – what ever it may be. Most of the time I happen to get it right – probably because I watch and listen. So some things work beautifully. Others, well, not so great. It’s all a matter of trial and error. I learn as Matt learns. I move forward as Matt moves forward. If something doesn’t help to move him forward then I need to try a different route and I make sure that Matt does not enter a static phase. I don’t want him to get too set in his ways or refuse to try something new - that would be a disaster. As long as Matt continues to grow, both emotionally and socially, then I know we are on the right road.

How do I know he keeps improving when the advances are so small as to not be noticed by anyone else? I know because I am an expert on Matt. I’m an expert because I watch and I listen. I write down dates when something new has been observed and I celebrate even the smallest of victories. It makes his progress memorable.

So, be an expert on your child and their specific form of autism. Be empowered. Be wary of snake-oil treatments and medications and choose your path cautiously. Most importantly, accept your child for who they are – autistic or not.

Cartoons Rule!

Here I am in the den trying to think of something to write about that I haven’t already covered. I have writer’s block – such torture. As I sit and ponder I hear the sounds of hardy laughter emanating from Matt’s room.

Matt is watching Bugs Bunny – the new DVD he just bought. The DVD is a collection of the classics and Matt grew up on the classics. Bugs Bunny and all his friends, the familiar theme songs and character voices – what a blast from the past. Matt has been steadily laughing now for 5 minutes straight. I take a moment to listen – ah, Road Runner and Wiley Coyote. No wonder he’s laughing so hard.

Cartoons have always been something I enjoy and I started my kids out early on the antics of such characters as Tom and Jerry, Scooby-do, The Flintstones (I know every episode by heart), and of course, Bugs Bunny. Matt has found cartoons – especially these silly ones from the past – to be the most enjoyable too. He has openly laughed while watching since he was just a toddler. There were times in the car that Matt would burst out laughing and we would all look at each other quizzically, “What’s so funny?” we wondered. I had to wait until he could speak to find out the answer to that question – Road Runner and Wiley Coyote, Bugs Bunny or some other cartoon. Yep, all those times he would burst out laughing, Matt had actually been replaying cartoons. Matt was watching these reruns in his mind and laughing at all the right moments. If you asked him “What’s so funny?” he could describe the entire scene to you, complete with any road-signs poor Road Runner had to read, or Bugs Bunny or Elmer Fudd held in their hands.

Holidays and Birthdays always brought VCR tapes of classic cartoons from the grandparents. Matt literally wore out each tape (and 2 VCRs). Each replay brought hardy laughter and memorized speech – which was fine with me. I know, I know . . . I should have modified his behavior – according to all those experts who have no autistic child of their own. According to them, I was supposed to try and curb his desire for routines and “strange” behaviors. But I must confess, I liked it (gasp!). I loved hearing the joy. I loved seeing the smile. Why in the world would I break his heart over something as trivial as watching cartoons? So I let Matt enjoy his cartoons and his movies over and over (and over and over) until the tape or the VCR just couldn’t play anymore. And Matt stayed happy and openly displayed this most precious of emotions. Did it ever do any real harm? Well, I guess if you counted how many people thought they would lose their mind after hearing the same cartoon 8-10 times in a row – but heck, they’re family, so they just accepted it and suffered.

I have another confession; I still love cartoons. I haven’t watched any of the newer ones. They are not the same. The plots are too serious or they are just not goofy enough to suit my sense of humor. Matt understands – he likes goofy too.

So as I sit in the den and listen to his laughter – yep, still going on – I think about how much joy this child carries with him everyday. He laughs so readily, he smiles and jokes so easily. Hearing the sounds of joy fill my house I am glad that I never took away his desire to replay tapes. I survived, my family survived and Matt grew up with laughter and joy. In the end, the only thing that really matters is that my son is happy.

From all indications, he is enjoying his new DVD immensely. I sit and ponder on the teaching value of such silly animations. The facial expressions are really obvious for each character – you definitely know what they are thinking. A Daffey Duck with a face full of buck-shot from Elmer clearly displays disgust, loathing, and shock. A Road Runner looking at a bowl of seed tainted with explosives clearly shows intelligence and a “yeah, right . . . “ Matt laughs at these expressions because he can read them clearly. He could watch the facial expressions of animated characters long before he could stand to look at a human face. He was safe with the animations – and he learned facial expressions relate to human emotions. He also picked up a wonderful sense of humor and an easy laugh – 2 very endearing traits. So, did they teach Matt anything? Of course! Every exposure to cartoons taught something.

Children learn through interacting with their environment. What type of environment we choose to expose them to is up to us. An autistic child learns the same way in this regard – their environment is everything. Watching the classics (cartoons)? Well, they're really just another minor player in the entire scheme of things, but vastly important to Matt experiencing joy on command. Bad day? Turn-on the cartoons and watch the bad times slip away.

As I finish writing I hear the whistling sound of a bomb dropping on Wiley Coyote and a very hardy laugh burst from Matt. Yep, cartoons rule!

Mmmmm . . .

Thursdays are pizza day around our house. Matt really looks forward to his Little Caesar’s, so much so that most of time he opens the hot box and snatches out a slice on the ride home. This past week he did just that and while chewing on that first bite, added some yummy sounds, “Mmmmmm”. It was great to hear the sounds of pure pleasure emanating from the back seat.

I can’t tell you when he first started doing that – making yummy sounds – but he was a very small boy, probably 3-4 years old. Matt would almost hum during each meal; take a bite – chew – hum - swallow, take another bite – chew – hum - swallow. We always knew when he approved of the menu.

One of the signs of autism is being a very picky eater. Matt would rather starve to death then put something in his mouth he was unsure of. It seems as though it took forever for him to just try pizza, or try a hamburger. I packed Matt’s lunch for school on days I knew the menu lacked any items he would touch. If there were at least one item on the menu, then I wanted him to buy his lunch, hoping he would be hungry enough to try something else on the plate. Much to my surprise, this actually worked. One day the note from Matt’s aide simply stated “Matt ate a hamburger today!” and from that day on he ate hamburgers – ketchup only – from any restaurant we took him to. His food list started out small – just 5 and is now up to about 12-14 (which is amazing!). He will even try a new item on occasion if it smells OK. For example, we once bought a layer cake with white frosting, something we know Matt likes, only to find out that it wasn’t a white cake – it was yellow (gasp!). Matt took one look at it and frowned in disapproval. “It’s pretty good, Matt, you should taste it . . .” I suggested. To my surprise he did and agreed to have a small piece – a very small piece. He ate that one piece of cake, but only that one. He wouldn’t touch another slice of that same strange-looking, yellow cake. One odd colored piece was all he could stand.

Matt eats finger-foods. He love’s hotdogs, hamburgers and pizza - the “All-American” menu. Matt will take his hamburger and balance it on the tips of his fingers, as if to put it on a pedestal. Maybe he does this so he can admire the shape or see all sides by simply rotating the wrist. Regardless of why he does it, the sheer dexterity to even eat a burger this way always astounds me. He will eat some vegetables; peas, corn, broccoli (yes, can you believe it – broccoli?) and potatoes – but only if they are French fries. As for fruit? Grapes – that’s it. He likes cookies – but only Oreo’s and chocolate chip (not home made) and other sweets – like cupcakes, and cake- but only white or chocolate – and don’t go trying to sneak in some coconut frosting – yuk!

Each meal is pretty similar to the last meal. We jumble-up the combination sometimes, but let’s face it, they are all about the same. When he was little each meal brought delight and Mmmmm. As he grew older the sounds of “yum!” grew fewer and further apart. It’s been quite a while since we heard the sounds of pure bliss at dinner time. Then last Thursday we heard the familiar sounds as we drove home. Matt was leaning back, his eyes closed and a half-eaten slice of pizza perched precariously on his fingertips. “Mmmmmmm” the sound softly rising out of him as he chewed. His lips smacked loudly. He took another bite and again he hummed.

And all was right with the world.

Quirks in Behavior

Have you noticed that autism has started to become popular? There are people who have decided that they must be slightly autistic. It’s no wonder. The autism spectrum is vast and the behaviors are so varied that now everyone can look at themselves and say, “Hey, I do that! I must be autistic!” I hate to put a damper on your insight, but unfortunately, you are most likely just . . . neurotypical (normal-brained).

Increasing autism awareness is a good thing. We want everyone to know what autism is and the challenges that come with having that particular diagnosis. The awareness campaign has also increased the number of adults who now believe that they were autistic. First of all, “were” doesn’t fit with autism. You are either autistic or you are not – it doesn’t magically go away because you grow up. Second, everyone has personality and behavior quirks – everybody. A few strange behaviors do not indicate a life-long communication disorder.

The increased awareness coupled with the epidemic in new cases has also made autism the new topic around the water cooler, TV specials and news stories. Most individuals know what autism is and almost everyone now knows someone who is autistic. It’s only logical that people would reflect upon their own special quirks and come to the conclusion that they themselves have some autistic traits. A few traits do not make it autism. Am I autistic? Gosh, let’s see… I like to be away from people when I am not working. I am a hermit who lives in the woods. I like my house organized and clean. I like my file cabinets organized, my clothes organized, my pantry organized – basically, I am very organized. I have certain routines every day and when my routine is thrown off I get flustered. I make the bed before I get dressed – always. I check the news on the Internet while I drink my coffee. I need everything put in its place. I focus my intelligence on certain topics – all else is trivia. With all these strange behaviors I must be slightly autistic, right?

Wrong - I am just another neurotypical human being. Over the years Tom and I have joked about this more than once. If I get on him about tossing stuff down and not putting it away, I look at him and smile, “Humor me, it’s just my autism coming out”, but it’s all in fun. I don’t have autism – I have quirks.

Everyone has personality quirks - after all we are not a species of clones. To assume that any of these behaviors suggests autism is ridiculous. Yet, people scan history trying to find any famous individual with a certain set of quirks so they can claim them to be autistic. Do you know a truly autistic person? Chances are if you are reading this then the answer is “yes”. Next question; how well do you know them? If it’s your child and they are over the age of 5, then you have a pretty good idea of what autism is really all about. If you have or know a younger child, I am simply suggesting you may have less experience and therefore may be a bit more mystified by the whole autism-thing, so please don’t take offense. Those first few years are overwhelming and parents are in the throws of behavior modification themselves. I am sure most new parents will agree that raising an autistic child is not the same as raising a neurotypical one. After several years of learning to see the world as an autistic child sees it you come to know exactly what having autism really means. It’s hard to explain it to people without reverting to the common phrases associated with it – a “communication and social interaction disorder” just doesn’t fully describe it, does it?

I read last night that some famous people are now spreading rumors that they used to be autistic or have a mild case – as if it’s the flu. PLEASE! Quit trying to underscore the severity of the current pandemic. Anyone who really, really knows an autistic person is laughing at you! We know what a diagnosis of autism means. We know it is more than just a “communication and social interaction disorder”. We know what it looks like and how it affects every aspect of the individual’s life. We know.

So Courtney Love, chances are you are an autism-wanna-be. Just another normal person with some personality quirks that thinks autism is just a list of strange behaviors. My suggestion to you, Courtney, is to go ask John Travolta or Sylvester Stallone what they think. They both have children with autism and have the inside track on what “autistic” looks like. Better yet, ask Temple Grandin. I am sure she would tell you that you are simply neurotypical – sorry.

Over the years I have learned so much from my son. I now look at the world in a whole new way. Having an autistic son has enriched my life and made me a better mother, a better teacher, and a better person. Don’t let anyone minimize the accomplishments of the autistic person in your life by allowing them to claim that they too are autistic – just a mild case of course. No they are not – they are unfortunately, normal – just another neurotypical person with a list of personality quirks wanting some attention.

An autistic person would never seek attention that way – and they would never see their own unique behaviors as quirks.

Panic - to the point of near drowning

This is a hard story to write. It’s the story of the day Matt almost drowned. To be truthful, I could have lost more than one child that day, and I could have drowned too.

How old was Matt? I don’t recall. He was old enough to be fully grown, but young enough to where all the kids were in high school and that suggests he was about 13-14 years old. Matt loves the water but hates getting his face wet - unless of course he is wearing a face-mask or goggles. Whenever we were on vacation, we made sure to bring along his goggles and usually a snorkel too. With a face mask, Matt could swim and play in the deep end of a pool without a second thought. He never jumped in – always preferring to ease into the water slowly, taking the rungs of pool ladder one at a time. The other kids would run and leap or dive right in – but not Matt. Once in the water he would drop an item – usually a coin – and then dive under the water and retrieve it from the bottom. He could do this for hours, over and over. The other kids would play this game with him and he loved the competition. We could get him to play other games in the pool as well, but he had to have on the mask if water was going to be splashed in his direction or an under water attack was foreseen.

We also liked to take the kids fishing. Matt was not interested in the fishing part but enjoyed the trips to the river. He spent most of his time tossing rocks and calculating trajectories of the stones so that they would make just the right sound when they hit the water. He wasn’t fond of camping – staying overnight in a dark place where the bugs roamed free and the ground was cold and hard was not his thing. He always slept in our tent with a flashlight burning all night. I was always very proud of him for allowing us to take him to the woods without too much of a fight.

One weekend we decided to go camping and we brought our canoe – a massively long canoe that could fit the 6 of us. We chose our spot on the banks of the New River between Buck Dam and Byllesby Dam. We had to hike through the woods with our canoe, our tents, back-packs and fishing gear to get to just the right sandy area. It was a beautiful sunny weekend with a forecast for continued sun and temperatures in the 90s. Taking children fishing is different than actually going fishing. I spent all of my fishing time untangling lines, putting on new line and hooks and squishing worms onto hooks. I can’t recall if I ever had the chance to actually cast my own line even once. The kids grew tired of fishing, which is understandable since they kept casting into the tree branches and after several hours of “fishing” we decided to take out the canoe. The temperature was climbing close to 92 degrees and the water looked more and more inviting.

There are many islands in the New River, small bits of land that we felt the need to explore. Each person in the canoe had a life jacket. The kids hated wearing them, heck, I hated wearing a life jacket too, but they are a necessity (and the law). The New River has strong under-currents in several areas. Anyone falling into the water near one of these currents could be swept under in a matter of seconds. Every summer there are reports of someone falling into the water, their bodies found days later much further down stream. We explained this to the troops and even though they knew why the jackets were required they protested. The protests were immediately countered with the rule that if they wanted to ride in the canoe then they had to wear a life jacket. Each child reluctantly put on a vest.

We paddled over to a set of the islands that were close together. A small rock bed connected the two islands and a trickle of river water flowed over the stones. We beached the canoe and everyone scrambled out – ripping off their vests and kicking off their shoes. Everyone was drawn to explore the rock bed with its small stream of cool water. We soaked our feet and it felt so good that we sat down in the water. We slid from one rock to the next, enjoying the coolness of the water on such a hot day. The older boys waded further away followed by Sarah and Matt. They headed for the point of the rock bed that connected to the river. “Don’t go too far!” I yelled. They kept going. “You’re too far ahead!” Tom yelled right after. The kids kept going, hardly slowing down. It was a race to see who could wade to the river first. As they moved closer the water got deeper. Christopher was up to his armpits when he finally stopped. Jacob had taken a route closer to the shore line and was about knee deep. Sarah was taking the opposite shore line and was also about knee deep. Matt was headed straight up the middle. Tom and I, both barefoot, traversed the rocks as quickly as we could, but the stones were sharp and our progress was slow.

“Help!” Matt screamed. I quickly looked up to see Matt frantically splashing the water. His head kept going beneath the surface. Matt had hit a deep hole and the water was over his head. Matt could swim, but not without goggles. The water on his face caused him to panic. Both Christopher and Sarah were close to him. “Get him!” I screamed. My heart was racing. I tried to run, but the rocks were so sharp and I couldn’t get there as fast as I needed too. I focused on Matt and the rocks beneath my feet. Step, step, step, look up at Matt, step, step, step. I was moving as fast as I could, but I was moving too slow. Tom was closer to the bank and was moving much quicker, but even he was not fast enough. Christopher, Jacob and Sarah tried to get near Matt, and Christopher arrived first. Matt grabbed him and pulled him under. Matt was trying to use Christopher as a ladder to climb out and he was strong. I held my breath – where was Christopher? Christopher managed to get away, and burst through the water coughing and choking. “Sarah! Stay back – don’t let him pull you under!” “Try to get behind him!” Conflicting commands were being shouted from both Tom and I.

My progress quickened when I hit deeper water and could swim. Tom was almost directly across from Matt by then. I came up behind Matt and my arms immediately went around his body and wedged under his arms. He was heavy – so heavy. My legs were losing strength from treading water and we both went under. “I will not let go, I will not let go, If Matt goes under, then I will too, I will not let go” the thought repeated itself over and over in my mind. I kicked as hard as I could and we reached the surface. Matt took a deep breath in between his frantic sobs. “I’ve got you, Matt, and I won’t let go” I said directly into his right ear. “Calm down, I have you.” I said as sternly as I could. His arms were still smacking the water but his body relaxed a small bit - enough for me to tighten my grip. I was still treading and my legs began to feel like stone. Tom was shoulder-deep nearer the water’s edge and was leaning out toward us. “Push him to me” he called. I was sinking, my energy sapped. We were only a few seconds away from going under for the last time. I knew my energy would be completely drained within minutes – I gripped Matt tighter. I had a white-knuckle grip on my son and the idea of letting go enough to push him went against my instincts to hold him as tight as possible. I had to convince myself to do what Tom requested. I remember forcing myself to think, “If I am to push him to safety, then I will have to let go”.

It was a leap of faith that allowed me to push Matt away. It was my faith in Tom. I knew Tom would catch him. I knew he dive in if something went wrong, if I couldn’t push him hard enough to make it to where Tom stood, but it was hard to let go. To push Matt such a distance I would need force and the only way to achieve the force was to go under the water and kick to the surface and at the same time pushing my son up and away from my body. My legs were heavy, I couldn’t feel them anymore – just dead weights hanging from my body, but they were still kicking. My arms were tired, the lock I had made around make seemed to flex every muscle in them and they were burning. I had one shot at this – maybe. I could hear the kids yelling and crying and I could hear Tom repeating his request, “Push Matt to me!” We went under.

I stopped kicking for a fraction of a second and we sank like a rock. As the top of my head began to feel the water I started kicking with all I had left. As we reached the surface I forced my son away from me, the sound of his frantic cries in my head. Tom reached out as far he could and in a flash, grabbed Matt, clutching him by the arm and immediately dragged him in to the rocks with the help of Jacob. My energy was spent and I was going under again. What could have been my last view above the water’s surface was of Matt reaching safety. I relaxed. The water flowed over my head. Without a struggling Matt attached my body I could float and I soon rose to the surface. I stretched out my arms with my last bit of energy and gave one last kick – directly toward Tom. His strong grip reassured me that it was over and he pulled to me shore.

You have heard of traumatic stress syndrome, where a person goes through a traumatic event and replays it over and over in their mind, unable to forget, barely able to move forward in life. I have had this event in the recesses of my mind since that day. I have replayed it a thousand times. I am moving forward with my life, but there are times when this event brings me to tears – like it has today. I think of what could have happened and am chilled to the bone. As time passes I can look back and see that everything fell into place perfectly for the saving of Matt’s life. If Christopher had not attempted to save Matt and give him those few seconds of rest, could Matt have stayed above the surface for me to get to him? If Sarah had not been able to get close enough to reassure Matt, would his panic have caused him to go under? If Jacob had not gone to Tom’s aid, would Tom have been able to pull him to the rocks? When the emergency hit, Tom took one route and I another. Without speaking we worked like a well oiled machine, combining forces perfectly to retrieve Matt from the water’s depth. Tom and I even came together at just the right point near enough to the shore to allow for such a hand-off. And I had just enough strength to get Matt within Tom’s reach. Seconds later and I would have been to the point of exhaustion and Matt and I would have gone under for the last time. We were so fortunate.

It should never have happened. I should never have allowed the kids to remove the vests. I knew Matt couldn’t swim without his goggles, but it never occurred to me to bring them. I feel stupid and ashamed that my lapse of thought could have ended my son’s life. Had it been Christopher, Jacob or Sarah, I still would have held on tightly, resigning to go under with them rather than let go. Of course, none of them would have panicked the way Matt did simply because water touched his face.

Matt needs me to keep him safe – more than any of our other children, because Matt is autistic. It’s a really big job, a very important job. Unfortunately this job has no text book or class work or practice sessions – it’s all on-the-job training. One mistake can have nasty consequences. On that particular day, Matt’s ability to stay calm was completely absent because water had touched his eyes. I knew about this fear and neglected to bring goggles, neglected to make him keep on his vest. I have learned from it and am haunted by it. I know I will live with this shame the rest of my life. Matt, on the other hand, has no memory of this event. He still enjoys the water immensely. Matt swims in the deep end, wades through creeks, plays in the ocean and he does it all without any fear

– as long as he has his goggles.

.

We are all Hokies today

Today is the anniversary of the Virginia Tech (VT) shootings. Students and faculty lost their lives in this campus massacre 3 years ago, April 16, 2007. Matt is a Hookie fan – a really big Hokie fan. I have only been a Hokie fan for a few years, since just before the shooting.

Matt has always loved VT. Since he was old enough to watch a game, see a Hokies t-shirt, and explore the campus. We took all the kids to tech years and years ago when they were all so very young. They raced on the sidewalk paths between buildings and climbed the stairs between monuments, and explored the football stadium. It’s a beautiful campus. The architecture is magnificent. I’m not sure what caught his attention first, the architecture or the sidewalk patterns, but Matt has been hooked ever since that first visit. Every child eventually decided on a favorite team. For Matt, it had to be Virginia Tech. No one else in the family was a Hokie fan, so he wasn't mimicking anyone. He picked the Hokies on his own. Soon everyone knew Matt was a big fan. Each holiday and birthday brought more VT-logo items; key chains, t-shirts, sweatpants, shorts, posters, mugs, glasses, and the list could go on and on. In deciding what color Matt wanted his game room painted, guess which colors he chose? Hokie maroon and orange. The walls may be a boring white but the trim and cabinets are bold maroon and eye-popping orange. Matt matched the colors at Lowe's using only his memory and when we held the paint samples up to his VT throw rug the color match was seamless. Matt even bought a VT couch (maroon and orange with the VT logo on the head rest) to put in his newly painted VT game room.

Toward the end of his last year of high school Matt was invited to tech for a seminar for students with disabilities. He stayed in a dorm, ate at the cafeteria, and shopped at the bookstore. I was with him as his facilitator and got to experience the campus also – and I became a fan. Morning seminars were followed by a long break. Matt would use his break to hunt out a new as- yet- unseen, corner of the campus and draw. His sketches captured details I hadn’t really noticed until then.

Matt could have gone to Virginia Tech as a student. His GPA of 3.85, his school activities, his class standing, all screamed for the admittance. Alas, Matt had not grown socially enough to handle the pranks of other students, the comments from teachers, or even the guidance of the help desk. He had real difficulty starting conversations or joining in, and when nervous, his speech clarity would decrease. It’s been 5 years since then and he has improved in these areas tremendously within that time. Could Matt handle campus life now? Maybe. But although he has improved socially, I feel he would do better with just a bit more practice in the independent thinking -self-esteem department.

If Matt would have gone immediately after high school, and he had stayed for a second year, then he would have been on campus the day of the shootings 3 years ago today. How would have reacted to the sounds, the police, the tears and anguish? As it was, Matt was glued to the TV that day. He continued to watch the news day after day in the wake of the tragedy. He was shaken.

Last year, after the crowds had left campus for the summer break, we took Matt to Virginia Tech. We walked the campus and found the memorial in remembrance of the fallen. We read each of the 32 markers, walking slowly- our heads bowed. The memorial was simple in its construction, perfect in its design. At first, not one of could speak. Matt went off alone to read each stone, and took pictures – lots and lots of pictures. He walked to the street area and looked over the campus grounds as if trying to picture the horrific scene. Tom and I carried on some light conversation, but mostly we were silent too. Matt was reserved and thoughtful.

We spent hours on campus that day. We walked everywhere. We explored all the sports arenas. We reminded ourselves that Tech was still a vibrant first-class school. And we remembered the innocents – students and faculty.

Matt will never forget. This year we are scheduled for our yearly campus trip the weekend after final exams and Matt has been marking off the days on the calendar. During our visit we will again find the memorial and pay our respects. This is - and always has been- Matt’s idea to stroll the campus and pay our respects to the fallen. I believe you call it empathy – one of those elusive emotions that autistic individuals are not suppose to display. I can attest to the falseness of this stereotype. If you need to see empathy in an autistic young man, then meet us there – at the memorial.

Today is the anniversary of a horrific event that hurt us all and especially those who have an intimate tie to VT. Today we all stand in support of our friends on the VT campus and remember. Today we are all Virginia Tech Hokies.