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 Matt’s first teachers assumed this as Matt appeared withdrawn, in another world, and they assumed he wasn’t learning.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.