Support the Curious

Learning to write took a curious route. Once Matt learned the alphabet, learning to write words was the next logical step. He learned his name, address, and the names of family members first – in addition to the word “train” of course. But usually, a child learns the words of their daily life, like “dog” and “cat” and “house”. No so with Matt. Once he understood that letters formed words his attention went to the listing of items in a group. His love of trains brought with it the need to list every type of car pulled by the engine and paper after paper was filled with the list – “coal car”, “gondola car”, “box car”, etc. He also found weather to be quite fascinating and wrote long lists of weather related phenomena, “tornado” “cyclone”, “hurricane” . . . Whatever he listed became drawings and the progression of his writing was intimately tied to his art.

The biggest of storms – hurricanes – are named, and Matt started writing the list of each major hurricane for the United States. This led to an interest in natural disasters and these were listed. Natural disasters led to all US disasters, “Titanic”, Challenger”, Oklahoma Bombing”, etc. The lists would be simple at first – just the names. Soon after the making of each list Matt would add detailed information, such as dates, specific locations and the number of people killed. He wrote lists everyday. New subject lists took time to start, as if he had to know absolutely everything from the previous list before he could venture on to a new one. Pictures of twisters, the titanic, and the space shuttle blowing up filled his art collection – extremely detailed pictures.

Over the years the intervals between an old list and a new list got shorter and shorter. He went from creating his lists on paper to typing his lists on the computer (saving us reams of paper). I still have the files containing Matt’s lists on my computer, and open them on occasion to just marvel at the thoroughness. Even typing with 12 font the list of just one subject can take several pages.

His desire to memorize each list brought a wealth of information and Matt could spout off details at will. “How many planets are there, Matt?” Matt would not only answer with the number but also with the distance of each planet from the sun, the number of moons and rings, and the characteristics of each planet’s specific atmosphere. No wonder Matt did so well in school. Most classes ask students to know lists – History, for example, requires a student to know events and their dates, and this was right up Matt’s alley.

Matt also wrote lists of video games and movies. Some of his favorite video games were battle / war type games and race-car games. We soon began seeing lists of weapons, armored vehicles, and body gear worn by the soldiers along with new drawings that contained details of each item. Various types of race cars found their way into his art as well – very detailed race cars. The art and the lists went hand-in-hand. Sheet after sheet of paper contained his lists (many typed on the computer) – each list meshing with drawing after drawing of each item. Favorite movies were put on pause and captured in his art. Lists were made containing each important film.

All of this may seem curious – and it was. Matt’s mind was organizing, filing away each bit of information into a specific category and it was tediously hard work. Many autistic individuals perform similar rituals and most people brush it off as a quirk of behavior. A person can train their eyes to see much deeper into the ritual of this behavior. After all, everyone has a special method of learning and we encourage their gifts. Matt’s method of learning used listing and drawing. He still uses this method for learning new things. His focus is intense. He must see the words. He must put them into categorical lists. He must see each item – as detailed as possible. He must train his hands to draw from memory. This is the sequence of his learning strategy. Had I seen it early on I could have advanced his learning tremendously.

Making sentences was the most difficult aspect of school. Matt had no desire to add words that could not describe the items of his list and these words were often left completely out. What were these absolutely useless words? If, as, it, the, at, or, to. I called them the “useless little words”. Matt had trouble with the insertion of these words into sentences for most of his school years, making English his worst subject. This area of difficulty was finally overcome by Matt’s desire to know more details on a subject and create new story lines for his art. He began reading. He copied the lines to paper first – just as he had trained his hand to draw, he trained his mind to write. He copied story after story verbatim, and this meant even the little words had to be written. As his reading progressed from simple stories to novels we saw a dramatic change in his ability to write. I would love to tell you that the teachers taught him to write, or that I taught him to write – but that would be a deviation from reality. Matt taught himself to write. The teachers helped and I helped – because we supplied him with paper, lots and lots of paper, and we supplied him with reading material – book after book. But the ability, the mechanics of the English language, came about through repeated practice - on his own terms. Make a list, make a drawing, write a story – a curious combination that required intense focus.

This is one of the reasons I find Matt to be so exceptional. He knew how to train his own brain. I had only a supporting role in his education. I always allowed him to have his curious behaviors of listing and supplied him with a forest full of paper. I still can’t believe the intensity at which he drove himself to learn. So much focus on what appeared to be the mundane was actually organizing his mind. I never really understood his needs back then, but I can see it all too clearly now. So this story is for those watching the curious behaviors of their autistic child and trying to figure out if these behaviors are acceptable or should be deterred. Watch for the connections. Observe, observe and observe. There’s a good possibility that the child is finding a way – their very own unique way – to learn. Be prepared to support the curious.

Beware the Babysitter!

Beware of babysitters! Yep, babysitters can be a nightmare. My first sitter was a friend’s mom and she was wonderful, but she couldn’t continue on being my sitter – she was just temporary until I could find one full time. We were living in Illinois at that time and day care centers were not as prevalent back in the 80s as they are today. People that babysat did not need to be licensed or be inspected. After months of inquiry I finally came across someone to watch my boys while I worked. She was a short, dark-haired woman in her late 20s, we’ll call her Randi. Randi was an LPN who worked part time. I met her at work as our schedules at the hospital overlapped. She seemed hard working and pleasant and I had found out from a friend that she watched children during the day time. My husband worked days and I worked evenings and we only needed someone to watch the 2 boys for a few hours in between.

She offered to watch them and I set up a time to meet with her at her home and bring the boys so they could all get acquainted. Matt was just a little fellow – only 18-20 months old. He had been different of late – crying for no apparent reason, acting afraid, turning his gaze away – and I had no idea these strange behaviors were the onset of his autism. Christopher was not quite 4 years old.

I took the boys over to Randi’s house on my day off. It was a wonderfully warm day and her yard was in bloom. The house was neat and there were several other children playing in the living room when we arrived. She invited me in and we went to the kitchen and sat at the table. I looked around. The kitchen was small but clean. She had her table at an angle on one wall and her refrigerator at an angle in the opposite corner – hmm, that’s different. We talked for a while. She told me how her husband worked nights and slept during the earlier part of the day and how she did babysitting so she could spend more time at home with her own young son who was Christopher’s age. It seemed like a good match and I hired her.

It was hard to leave the boys each time I dropped them off, watching them cry, hearing their sad voices as I drove away, but I assumed this was normal. My friends assured me it was. There were more than a few times I wanted to just turn the car around and go back and get them, call in to work, or better yet –quit so I could stay at home and be with them. Alas, that was not an option. We were a 2-paycheck family living week to week and a drop in income would have drastic consequences. So, I left them, crying and pleading.

I should have listened to my own inner voice. I should have told my friends that their pleas were not normal, that their tears were more than just from missing me. But I was young, a new mother, and I believed most people to be good . . .

One evening it all came crashing down. Ignoring my instincts would prove to be a haunting memory. Matt was crying again. I couldn’t seem to console him no matter what I did. I held him close, patting his back as I paced the kitchen floor. “I don’t know what’s wrong with him, he cries so much” I said aloud to no one really, just talking to myself. Christopher just happened to be running through the kitchen and stopped. He watched me pace and could see the worried look on my face. “Maybe you should put him behind the refrigerator” Christopher offered. I giggled, “Now why in the world would I want to do that?” I asked. “Because Randi does it.” He replied. I stopped cold. The air seemed to just vanish from my lungs, I couldn’t breath. Barely able to form a sound, I looked at Christopher and straining I uttered “what?” “Oh Randi does it all the time. When Matt cries she just picks him up and puts him in the corner behind the refrigerator. Randi said if I get noisy then I have to go back there too.” The shock began to wear off and the anger began to rise. This woman, this evil, lying, insane woman was sticking my baby behind a refrigerator because he cries. Oh my dear Lord!

I was hot. I wanted to know if this were true. I wanted her head on a platter! I called Randi. “Do you know what Christopher just told me? He said you put Matt behind the refrigerator!” “Oh that”, she replied, as if it were nothing at all. “My husband was trying to sleep and your kid was screaming his head off. I put him back there to muffle his cries”. Oh my dear Lord, it was true, it was really true. She didn’t even see anything wrong with it!

Needless to say I didn’t take the kids back there. I wanted to turn her in to child services, get her committed to a mental institution, or at least put her in jail, but my husband (not Tom) convinced me to just drop it because all I had was the words a not quite 4 year old boy. Although I never called the police I did manage to tell everyone I knew what had happened – maybe I could stop her by word of mouth. I’m not really sure what all happened but Randi and her husband and their refrigerator moved away a few months later. Personally, I will never forgive myself for not calling the police. I am haunted by the possibility that another child was forced to undergo “muffling” of their cries. Not only was I young and stupid, I was spineless.

I didn’t seek another sitter for years. I cut back on my hours instead. Of course, we then entered the world of financial hardship and I started watching other children for some extra money. It wore me out because I played, we sang songs and I drew pictures for hours each day, but I gained peace of mind. The next time I had to have a sitter I was in Arizona, recently divorced and needed daycare so I could work full time. By then there were daycare centers everywhere and they were licensed and inspected. Unfortunately, by then Matt was full blown autistic and most centers did not have any experience dealing with this type of child.

The daycare center seemed to be run well and there were lots of children there - so many children that they needed to be separated by age groups. Christopher was in a different group than Matt. The young ladies did a fine job with the normal kids but they were in over their heads with Matt. He cried, he fought, he fell to the floor. It almost killed me. I dreaded each morning and counted the hours to when I could retrieve them. Every day was a rip-your-heart-out day. Matt’s behaviors concerned the staff and I suggested they allow Christopher to be in contact with Matt throughout the day. Did they listen? Of course not. I dealt with the tears and the pain each morning for 6 months.

When we moved to Virginia, to the blue ridge mountains, I had to find another job and that meant back to looking for another licensed daycare center. I found one and we went through the same tear-your-heart-out mornings. The difference here was that the young ladies couldn’t get Matt to come out of the lockers. He would go in a locker first thing and sit there in the dark all day, fearful of his surroundings and strangers. Christopher was doing well except for his concern for Matt. He could hear Matt cry. He could hear Matt in pain. It had to be terrible for him. As with the last daycare center, the children were divided by age groups and Matt and Christopher were forced apart. I just couldn’t seem to get people to understand that Christopher could help. Matt would go to him. Matt would stay close to him and maybe even eat. Instead of trying something of this nature they decided it would be best if I didn’t bring Matt anymore.

So, back to finding another sitter. This next one was an older woman. Every day I quizzed Christopher about what he and Matt had done at her house, trying to stay on top of any problems that might arise. Unfortunately, this woman was fascinated about Matt’s autism more than she cared about taking care of him. To her, Matt was a curiosity, an object, not a little boy. She thought she should teach me how to interact with my son – not a good idea. Please don’t tell me how to raise my children. Every parent’s thorn – a person who just knows so much more than you on the correct way to do things, please! She didn’t last long.

The last sitter, Diane, was the absolute best. She met the bus each day after school, fed them both actual food items they would eat, made them do their homework, played with them outside on the swings, let them play video games, and she was always smiling. Her house was close to their school. Her daughter was sweet and attentive to both boys, her husband, terry, even lent a hand when she was busy. They had pets, laughed a lot and fell in love with both boys. Christopher and Matt kept Diane as their sitter for years and years. The only thing I want to know was where was this woman hiding all those years of anguished cries and tears? Diane was a blessing, truly a blessing.

I had not been able to trust anyone with my children since Randi and the refrigerator. In getting to know Diane I found that it was possible to trust again. It renewed my faith in people and gave me great peace of mind knowing my children, my entire life, was in the hands of someone who truly cared. Both boys blossomed into happy, well adjusted young men and Diane had a hand in that. Matt got to know her well enough so that I could go to work. I would wave to him - he would wave back - and then hurriedly run to the TV to play a video. No more tears or anguished cries. Life evened out. Some of those mountains I had been hiking uphill on my hunt for childcare just melted into mere bumps on the trail - and it felt good, real good.

Jacob's Wedding

Our family is growing. First, Sarah got married to her fiancé of 5 years and then Jacob got married to his sweetheart the year after. The new members, Paul and Felicia, both treat Matt well, for which I am thankful. It is a wonderful statement to their character that they each picked spouses that could not only accept Matt for who he is but also put forth effort to understand his world.

This was really brought home to me last fall at Jacob and Felicia’s wedding. Wedding planning is a long and arduous task, taking months to prepare, deciding all the details from who will be in the wedding party to the decorations on the tables at the reception. In choosing the groomsman Jacob had decided to include each one of his good friends and both his step brothers, Christopher and Matt, for a total of 7 (yes, 7!). He revealed this to Tom and me before he actually asked them, giving me a chance to explain the role of a groomsman to Matt.

Matt hates dressing up – he’s a shorts and flip-flops kind-of-guy. I would have to appeal to his love for Jacob if I was going to get a yes out of him. I went in his room and sat down on the edge of his bed. He was playing a video game and I asked him to please pause it. He knew something was up. “You know Jacob is getting married in the fall, right?” I asked. “Uh, yes.” He replied. “In a wedding you have the people that are most important to you stand up with you and the guys are called the groomsmen”, I explained. Matt looked at me funny, as if trying to figure out where all this was leading. “Each groomsman wears a tux and stands in a long line next to the groom – like in Sarah and Paul’s wedding”. “Oh yes, I know!” Matt replied. I could tell he was picturing Sarah’s wedding the year before and understood the meaning of groomsman. “Only the special people in Jacob’s life are asked to stand next to him,” I continued, “and Jacob wants one of those special people to be you.” I held my breath waiting for his comment. If Matt would be uncomfortable or afraid he would tell me – Matt could be very blunt in his answers. “Oh my” was his only response. I needed to rephrase it a bit, “You are special to Jacob and he wants you to be in his wedding. Will you do this for him?” I held my breath again. “Yes!” The excitement in his voice was undeniable. I told him Jacob would be asking him soon.

When Jacob did ask Matt soon after Matt gave a smile and a yes and there were high-fives all around. Matt loved the high-fives. It was a man-type hug, one full of joy and smiles and triumph. Each high-five brought smiles and laughter and great compliments. Months went by without too much discussion about his role until it was time to get the tux fitted. Matt understood the fitting process because he’d had this done for his prom years before. Christopher was also a groomsman and went with us to get measured. Matt went through the process of fitting the tux as if he had done it a million times before and without complaint. Next would be the rehearsal.

At the rehearsal Matt met each of the young men involved. As parents of the groom it was our job to do the rehearsal dinner and Matt helped us at every turn. He put up tables, put the decorations up, and helped us to turn the activity room at the church into a banquet hall. We would not be having very many items on the menu that Matt would eat so Tom took Matt on a short road trip to McDonald’s for dinner about an hour before the attendants arrived.

Jacob and Felicia had decided we would all eat first and then rehearse. Guests began arriving. Matt went over and sat with Christopher and his date. There were so many people there that Matt had never met and I worried that he would get uncomfortable and disappear. But Matt stayed in the crowded room, and was engaged conversationally by his brothers and sister and other family members, allowing him to feel a part of the group.

During the rehearsal itself, Matt was shown where to stand, where to walk, and what to do. He would be the last of the groomsmen to enter and the last to leave. Felicia had 6 bridesmaids, leaving Matt to walk to the aisle alone. But a special twist was put into the recessional at this point. Matt would turn at the aisle, then stop at the front row and escort me out. We practiced. Matt seemed to take it all very seriously even though the rehearsal was quite playful and joyous. He did enjoy the laid-back atmosphere, but he took his groomsman-duty to be a very serious affair. Through out the evening Jacob and Felicia came by numerous times to talk with him and give high-fives. The bright smile on Matt’s face revealed just how much the added attention meant to him.

The next day was the wedding – the big day had finally arrived. Matt put his tux on in the bathroom at the church - Tom handing him each item of clothing. Matt obligingly put them on, a bit overwhelmed by just how much he had to wear and after completing this task followed Tom and Christopher to the room which held the groomsmen and Jacob. Jacob immediately came over and told Matt how good he looked – and again gave high-fives. The high-fives kept him focused on Jacob and kept him determined to do his best.

It was hours after dressing before the ceremony actually begun. I kept expecting Matt to just put on the brakes and declare he’d had enough, but that never happened. When the ceremony began we watched as Jacob entered, followed by each of the groomsmen - Matt was last. He stood at the end of the line and stayed in his position for the entire ceremony. This was very difficult for Matt. He used to just sit down in place or wander off when he was put in this type of position as a young boy. But Matt was not a young boy, he was a man, and his brother was counting on him. You could see the determination on his face – he would not let Jacob down, no way, no how.

When it came time for the recessional, Matt did exactly as he had practiced. His turn at the aisle was a sharp, quick, military style turn. He took a few steps forward to the first row. As he stopped he jutted his elbow out in my direction. I proudly took his arm and we walked back up the aisle to safety. Matt had done his job exactly as he had been shown with a bit of military flair added in to make it his.

The reception hall was packed. There was room for Tom and me at one of the tables with other family members. Christopher, Sarah, Paul and Matt were all to sit at the wedding table, but you know how people move around and chairs get pushed from one table to another. An empty chair was available next to Jacob, the chair meant for the best man. The best man had already taken up residence with his own wife at a small table close by. Jacob asked Matt if he would sit with him and Felicia.

Maybe this isn’t such a big deal to some but it was a big deal to me, to Tom and especially to Matt. Again, there were high-fives and smiles all around. Matt was looking very proud. His face said it all. He was sitting with Jacob and was very honored to do so. Matt took part that day in almost every activity. He even enjoyed it. He never seemed bothered by the crowd of strangers, never looked uncomfortable in his suit – just the shoes (we had him kick those off before entering the reception and replace them with his flip flops). I never would have imagined that Matt could handle that type of situation – from beginning to end – not in my wildest of dreams. Not only were Jacob and Felicia bonded together on that beautiful fall day. Jacob and Felicia cemented their bond with Matt.

And there were high-fives all around.

Art Transforms a Mind

I have mentioned before that when Matt was only a little over year old he would hold up a ball and turn it this way and that, looking at it from all angles. I just knew Matt would be an artist. After the autism set in, it seems Matt’s mind was put on hold as far as art was concerned. It was several years before I noticed that his eye for perspective and talent toward perceptual – conceptual drawing was still intact.

Matt began his art as all children do – scribbles with crayon, lines on a page – what I call his “primitive art”. I felt his drawings revealed his mind and always looked at his art with a deep interest, trying to find the meaning behind each drawing. The drawing of multiple V-shaped lines in rows was finally deciphered to be “the 3-Vs” – the large power lines that traversed the mountains near our home. It was that “light-bulb” moment that led me to investigate every drawing there after.

I had showed Matt how to trace a picture, allowing him to draw anything he wanted and have the end-product look similar to the original. He was unhappy with his own simple renderings and was easily frustrated when his art didn’t quite meet his own high standards. Tracing gave him a new found pleasure in art. At school he couldn’t trace. He had to do his school work before he could enjoy his one true joy – drawing. Everyday Matt would return home from school and I would unpack his back pack to get out his papers and read the teacher’s or aid’s messages. Each day I found the most interesting drawings on the back side of his assignment papers. Unable to trace, Matt had to recall his favorite items from memory and draw what he saw in his mind’s eye. These were of course very child-like drawings, not up to Matt’s standards of perfection. Years went by as I watched him teach himself how to recall detail in order to perfect his art.

His ability to draw from memory was learned – Matt taught himself. He would sit in is room and draw the same picture over and over. Each time a line was drawn at the wrong angle or too long, instead of erasing he would crumble the entire sheet into a ball and toss it away. He had to have perfection. His hands would draw slowly at first, getting each detail just right. Then he would repeat the process over and over until his hands could fly across the page and draw the most intricate of pictures in under 5 minutes.

This isn’t all that unusual if you think about it. Lots of people train their hands – crochet, knitting, driving a stick shift. Practice over and over allows you to perform a function without looking, allowing a person who crochets to watch the television, or a person driving a manual transmission to keep their eyes on the road. Matt’s love was drawing and he trained his hands to draw without thinking. This allowed him to draw any time and anywhere without having any of his beloved train books in front of him or his favorite movie on the TV. He began taking paper and pencil with him where ever we went – always ready to draw if the need overtook him. Drawing calmed his mind, allowed him to focus on the minute and decreased his fear of new surroundings and sounds. He used his art to communicate as well, telling me what he needed and what he was thinking. Matt had found a way to make peace with his world.

As Matt got older his interest veered more toward animation. The cartoons he watched became a daily need and the characters became his imaginary friends. He would repeat the lines of each character and add a few responses from himself. His new friends began to show up in his art. Again, Matt would practice drawing each facet, his hands moving slowly at first. He practiced drawing just eyes, then just facial expressions, and then body gesture. Page after page of practice allowed him to then combine these pieces to show any situation and every type of movement. Each new drawing became more and more detailed. Between the ages of 12 and 16 Matt learned to draw himself and began putting himself in his drawing with his cartoon friends.

Self portraits take time to master. Matt would look at himself in the mirror above his dresser and make various expressions. He wanted the hair to be just right, the expression to convey just the right emotion. As part of a new drawing Matt was learning new social skills. He used his animated self to interact with his animated friends, converse, and display both sad times and good. Watching him interact with animated characters concerned me – was this new behavior a good thing or a bad thing? I chose to think of it as a good thing – after all, he was learning to interact, even if it was not with real people. I’m glad I decided to just let it flow out of him this way because I soon realized his ability to interact with real, live people was improving dramatically. Matt had used the safety of his art to practice social skills and emotion. After getting comfortable with his animated friends he could now test his new-found skills on family members and school mates. Matt found a way to enter our world without overwhelming fear of the unknown – it was truly amazing to behold.

Matt has never stopped learning. Autism is not a static condition with children doomed to always be as they were at 2 years old. They learn, they change, they adapt to the new situations. Autism causes fear of the unknown, but given a supportive environment they learn to move past the fear and attempt the incredible – entering our world. I look at Matt’s drawings now and see a progression of determination and talent. I see a child growing and learning and emerging from beneath the dark cloud of autism. Would I have been that strong? Could I have done what he has done? I don’t know if I could have done all that he has.

Matt still takes paper and pencils with him where ever we go. Most times it is like taking a safety blanket and the items are never used. Sometimes he sees something and just needs to draw it – like the various street signs, or the beach at Hatteras, but these drawings are for later use in the stories he writes. You see, Matt’s art needed dialogue because it is animation and all comic books and cartoons have a story line. So Matt not only draws, he writes. Where in earlier years he could only communicate through his pictures, he now can communicate through words. The sentences are clear and the paragraphs well written. Art has transformed his mind. His ability to communicate in sentences, the continued use of eye contact and displaying the correct body gesture are all a result of his attention to detail, the tons of practice and the animated friendships he developed through his art.

If I could pinpoint one pivotal moment in Matt’s life that changed everything it would have to be the day that I put Matt in my lap, placed a pencil in his hand, placed my hand gently over his and we began to draw. I didn’t know it at the time, but that one act, that simple, 15 minutes of attention, gave Matt the one thing he needed to transform his entire life. I am in awe.