Prom - it's a social thing . . .

When I taught at the high school level I would bring Matt to some of the school events. This simple act of inclusion paid off in his ability to interact socially with his peers. One of the events was the MACC matches; an academic competition between area schools. I was one of the science judges. Matt would sit in the audience with me until the science portion was announced, at which time I would take my place at the judges table and Matt would stay in his seat and watch. Matt always brought pencil and paper. For the first few competitions he would draw as usual until the match began, at which time he would sit up straight and listen to the questions and answers. After a few competitions I noticed his behavior began to change. Instead of sitting quietly and listening to the questions and answers he started to answer them – out loud. I had to remind him a few times that if he were heard, then we would have to leave. It seems as though Matt has always talked to himself out loud. I think it helps him to focus when he can hear his own voice. Matt listened intently as I explained that if someone heard his answers it could be construed as helping one of the teams and they would be accused of cheating. Cheating was wrong – Matt would never allow such a thing! So, he used a much softer voice, one that could not carry all the way to the stage.

Sometimes his answers were right, sometimes they were wrong, but he answered them all as if he were competing himself. He would always cheer for my school and would always be disgruntled if they lost - an “agh!” arising from his vicinity as the final score was announced. His interest in MACC continued year after year. We even considered having him join the MACC team at his high school, and for the life of me I can’t seem to remember what the problem was, but he couldn’t join. Each time his school was up against my school Matt would root for mine – not his. I do remember thinking, “Ha! That’s what you get for not having Matt on your team!” Still, the “why?” escapes me.

Matt got better at answering questions over the years. His forte? History and Geography questions, of course! Matt has always loved history and maps. During these questions I would be sitting with him and he would quietly answer each question as if it were common knowledge. He would give a long slow sigh if the students got it wrong, as if he just couldn’t fathom anyone not knowing such simple events or locations.

Many of the students in the competition were young ladies and men from my dual-credit course (College-level Biology 101-102) and would come over to say “hi” and introduce themselves to my son. I had explained to my students in class one day that the first introduction would seem a bit strange as Matt would look downward and most likely not speak to them, but if they came over again he would actually greet them by name and look right at them. Several of the students tried it out – stopping by for the introduction before the competition and returning after the competition to say good-bye. They were amazed at the difference between the 2 meetings. Matt would smile and looking right at them, wave and say good-bye.

Matt got to know my students after weeks of MACC competition, so it came as no surprise that whenever I had another school event to go to, Matt was eager to come along. One of the biggest events was held every spring – the Senior Prom. The high school that I worked at made it a very big deal with decoration of the gym consuming the spring semester. Prom was always done elaborately with several departments lending their expertise; art, drafting, Home Economics, and P.E. (for the labor). The gym would be transformed into gardens with waterfalls (real water!), sculpture lined pathways, and cozy dining areas with drink fountains and fancy hor d’ourves. As one of the senior sponsors I was required to play chaperone – and it was always a pleasure. I asked Matt if he wanted to go with me and he thought about it. After several days he decided it might be worth getting dressed up for and agreed to go. No tux needed, just a nice pair of slacks and a shirt and tie.

For his first time at the Prom Matt took it all in. He looked around, took pictures, ate some cookies and drank some punch. He was introduced to new people and watched the students dance. The next year he got more into it and even danced with the young daughter of one of my friends. The year after that he even danced with my students. The young ladies would come over and engage him in a short conversation and then ask him to dance. Shy at first, they would gently take his hand and walk him to the dance floor. It didn’t take much time after that for Matt to feel comfortable in such a large gathering of people his own age.

The years went by until finally the time arrived for Matt to attend his own Senior Prom. He declined at first, but as he learned his friends were going - and they wanted Matt to be there - he soon changed his mind. Getting him fitted for a tux, buying flowers and choosing a place to eat were all minor decisions. The major decision was asking someone to be his date.

Matt doesn’t date. The social mingling of a boy-friend and girl friend couple are beyond his comfort zone. Tom and I talked it over and decided if Matt were to have any fun at his Prom he would have to go with someone he knew well, someone he could have a great time with, someone he could be himself with, someone . . . like his sister, Sarah. We called Sarah, who was at college, and asked if she would be interested in taking Matt to Prom. A resounding “Yes!” confirmed we had made the right choice. She would come home from college on that weekend and escort Matt to his Senior Prom – very cool!

The big day arrived. Matt got dressed in his tux and at first pulled at the collar and complained about the tie, but after hearing all the great compliments on his attire, decided it wasn’t so bad. Sarah dressed in a pale lavender gown and I French-braided her hair. I got out my mother’s costume jewelry – a choker studded with glass “diamonds” and helped her put it on. She looked beautiful! Matt gave Sarah her wrist corsage. Sarah gave Matt his boutonniere. We took pictures of the smiling faces of a very handsome pair.

They went to dinner with Matt’s friends and sat with them at the Prom. There was laughing, conversation, and dancing. For days afterward people would asked me, “Who was the beautiful young lady that went with Matt to Prom?” Each time I was proud to announce that it was Sarah.

Going to Prom was a milestone. I never would have guessed that Matt would be comfortable in such a large group, that he would attend such a loud social gathering like a prom. Attending the event solidified his feelings of pride at being a senior – having attained the top grade of high school, he now could see he had achieved what his siblings had achieved – he was going to graduate!. The weeks after prom flew by and Matt stayed on cloud-9 the entire time.

Would Matt have gone to prom if I hadn’t subjected him to all the school events at my high school? I have my doubts. Matt needs to approach social interactions slowly. I honestly feel that had he not had the many practice sessions at my school he would not have been comfortable enough to attend the social functions at his own school. Don’t hide your child at home. Take them with you – everywhere. Expose them to as many new things as you can – in small doses of course. Contrary to what many people think, autistic children are not “stuck” in their own world. The journey out maybe a slow one, but given time and experience, the road will lead them to a whole new world – one they can share with us.

Learning Biology Using Eight-legged Freaks

I returned to college after I was laid-off from my lab job in 1995, when Matt was only 9 years old. I decided I would work towards my Bachelor Degree in Biology at Radford University. During my second year I decided I wanted to do research. I had always loved science – especially biology – and had always wanted to do scientific research. I got my chance to learn the trade as a student under the guiding wings of Dr. Fred – a research biologist. His area of research was spiders – yep, spiders.

I chose to research how the male of a desert funnel-web spider (Agelenopsis aperta) knocked out the female prior to mating. My hypothesis was a pheromone; a chemical messenger that traveled through the air. Research takes hours upon hours of observation, and year after year of testing. I was also raising 4 children, and there were several times where my research time overlapped my family time. Consequently, in order to do both I would take the kids with me on occasion, exposing them to a lab filled with spiders.

Sounds pretty scary, huh? It really wasn’t so bad, after all each spider had its own little clear box – and a cover of course. There were approximately 100 spiders in the lab, but they were contained and the kids really wanted to see them, all except Matt. The first time I took them with me Matt stayed in the hall, peering in on occasion to make sure we were alright. Jacob and Christopher spent most of their time trying to figure out the small sign posted on the wall which read, “Time flies like and arrow, fruit flies like a banana”. Sarah was fascinated by the spiders themselves. I gave them a quick tour and showed them the video set-up for taping the spider’s activities. Fred came by and I introduced him to the family. He saw Matt in the hallway and stopped to speak to him. Matt was nervous and didn’t say a word.

Each time we went by the lab the kids got bolder. They took a closer look at the spiders and took another puzzling look at the sign. Matt came inside the door and looked around. If Fred was nearby he would stop to say hello and Matt, having recognized him from previous visits, began to greet Fred with a “hello” of his own. Matt became more comfortable with being in the lab and even got near enough to the containers of spiders to look inside. Most of our trips to Radford University included time to play on the campus. So although the reason for the trip to RU had something to do with the spider lab, it was just a small portion of the time we spent on the campus. Matt started to love these trips. He loved running with the other kids across the lawn and exploring the hallways of each floor of the science buildings. He especially loved seeing Fred, so much so, that when I announced we were going to the campus, Matt would reply, “To see Freddy!”

I finally graduated from RU and finished my research a few years later. Matt was now in the 7th grade and needed to do a science project for the science fair. We talked about several things he could do and he decided to do one about global warming (yes, it was occurring back then). He loved science - that is except for biology. He never cared much for learning about the living organisms of our world and instead focused on the disastrous events of mother nature; earthquakes, tornadoes, landslides, icebergs. He chose to study how melting icebergs affect sea level. We worked on it together. I was the guide to how to set it up and he was the tester and writer. He did very well on this project. This was important because years later he was required to do another science fair project for 10th grade – for biology. He knew what he had to do and although he absolutely hated homework and hated biology, he was not afraid of the actual assignment. We talked about this next project at some length. Nothing it seemed was of interest to him. Each idea I had was shot down and Matt had no idea what he wanted to do.

I then had an inspirational idea – spiders! We had some very beautiful garden spiders making webs in our yuccas. Garden spiders are the bold black and yellow spiders that form a zigzag pattern at the center of their web. I took Matt outside to see the spiders. I caught a grasshopper and tossed it on the web. Immediately the garden spider sprang into action, catching the insect and quickly wrapping her prize for a later meal. I was waiting for Matt’s reaction. A sound of disgust would mean “no way!” a continued gaze would signal fascination. Matt did neither. Instead, Matt laughed.

Matt knew I hated grasshoppers. They had been destroying my flowers and vegetable garden and wanted to get rid of them. Unfortunately, I couldn’t use insecticides for fear of harming one of our numerous pets. Matt also had seen the cult classic Eight-legged Freaks with me several times. The movie was far from scary and actually pretty funny, pitting people against spiders. Matt loved it.

I caught another grasshopper and handed it to Matt who quickly threw it on the web. Again he laughed at the lightning speed of the spider. Matt then caught a grasshopper on his own – the very first time he had actually touched a bug - and threw it on the next web. Again, the spider raced toward her prey, caught it and wrapped it, and again Matt laughed. His laughter convinced me we were on the right path.

Next we had to decide what to actually research. Matt decided to time the spiders to see how fast they could catch and spin. His hypothesis was that larger spiders could go faster than smaller spiders. Each afternoon we would head out to the yuccas. Matt took several photographs. He held a ruler up to each contestant and measured their length. We took turns in either catching the grasshoppers or timing the spider’s race to catch and spin on a stop watch. After collecting the data, I sat down with him to help him organize the material. I had to be so careful to not write this myself – it’s a very difficult thing, letting your child do all the work. Matt hated the writing part, his grammar was faulty, his spelling was weak, and his attention span was very short. But I sat with him each day and encouraged him to write one short paragraph at a time. Even one paragraph required several breaks and this meant the writing of the paper and the making the display board would take a lot of time. Matt just could not focus on it for more than 20 minutes at a stretch.

The weeks went by and finally his project was complete. The title was “Spider Race” and he got an “A” and even went on to the county competition. It was a great experience for him. I was most impressed during the judging of his display. Matt was asked a battery of questions by each of the judges and he was able to give very detailed replies. His teachers, his aid, and of course his family were all very proud of him. I still have the research paper and photographs he took.

Matt never would have done this sort of thing had he not been exposed to the spider lab at RU. His fear of bugs and spiders grew smaller over the years and the subject of biology no longer annoyed him. When he was young I had to force him outside but after his experiment in the garden with the beautiful black and yellow spiders, I never had to force him out the door again.

Matt has lost many of his memories over the years as he sheds various autistic traits but he still remembers the spider lab at Radford University and Fred. It must have had a great impact on him to have retained that particular memory. I guess you just never know what event will be a landmark event in a child’s life.

No one would have guessed one of the landmark events in Matt’s life to be one involving eight-legged freaks – spiders.

Let's Pretend!

Matt has always loved concerts and plays. Sarah was in quite a few of these events – starting in middle school. We recorded her first play and Matt would watch the video tape over and over (and over and over). He absolutely loved the idea of pretending to be someone else. It is interesting to note that one of the behaviors listed in describing autism is “no pretend play”, but this is just another one of those behaviors that seem to be in place only in the early years – it is not set in stone. The autism brain has a lag-phase, where normal behaviors are put on hold – in Matt’s case it took years to learn to pretend. But, once he began, he never stopped. One of the events important to learning to pretend came in watching Sarah pretend to be someone else, in front of an audience, and the audience laughed! This must have shown Matt that pretending was not only acceptable, it was fun. He watched that video daily – and for years!

Pretending to be someone else became part of his ritual. In playing a video game he could pretend to be in the action along with the animated participants, memorizing dialogue as if he were memorizing the lines of a play. As he grew older he learned to add his own lines - ad lib according to the situation occurring on the video screen. This really took off when Matt became a member of the OM team for Sheffey Elementary. OM – or Odyssey of the Mind – was an academic competition which included putting on skits. Matt found himself a member of a team that pretended.

He loved it. He found the skits to be funny and when Matt found something funny you knew it – his laugh was (and still is) a very deep, heartfelt emotion bubbling up from his very soul and it was (and still is) very contagious. His ability to speak fluently had not yet arrived and he had trouble reciting lines – not that there was any problem with his ability to memorize – only in his actual ability to speak. Matt had difficulty with pronunciation and grammar, and his roles in each skit were usually more active and less talk. He loved it. Not having to speak took away the stress of being different. He never seemed uncomfortable performing to large groups of strangers. This was most likely due to the closeness of his team, his ability to keep focused on them, and his ability to tune-out the rest.

Matt eventually got too old to be in OM and his grammar and pronunciation were still far from perfect, hindering any possibility in being in the plays at the high school level. Yet, Matt continued to pretend with his video games and with his favorite movies. During this time I started teaching - in a different high school. I started taking Matt to see the spring play each year. He loved them! He even video taped the play and gave copies to the cast. Each of the students from the play would meet Matt and shake his hand. That small gesture solidified them into his memory. He felt accepted and – normal. My students have always been very good with Matt.

Matt still pretends. Each video game he plays, he puts himself into the starring role, memorizing dialogue and even adding his own remarks where appropriate. The act of pretending has helped advance his speech. His voice is now clear, his grammar correct. He still has a small stutter when he can’t find just the right word and still uses an “umm” before a long sentence - possibly his way of organizing his thoughts before speaking.

Pretending has also given Matt a way to be normal. He can enter any fictitious world and be “The Man”. He uses the pretend play as a way to practice interactions, hone conversation skills and be someone who is not autistic – even if it is only for a few hours each day.

Pretending. It is a simple behavioral stage that all children go through. For the autistic child, pretending must be learned - just as they learn every other behavior – by practice and observation. After Matt saw his first play - Sarah’s play - he was hooked. The days, months and even years of listening to her play on tape drove us crazy. Yet, now, years and years later I can look back and see the importance of that play. It was a beginning. Matt knew if Sarah could do it that he could do it. He knew it was acceptable and normal. He knew it was fun and entertaining.

Matt’s autism cloud may have hindered his interaction and speech abilities, but his natural instincts showed him the way out from under that cloud. Pretending is definitely one of the wonderfully great methods he used to light his path.

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.

Six - yep, six

We became a Brady- Bunch type family almost 19 years ago. Christopher (mine) was 8, Jacob (Tom’s) was 7, Sarah (also Tom’s) was 6 and Matt (mine) was only 5. In forming the union of our marriage we were also forming the union of our children. Christopher was at that age where he needed to show everyone just who was in charge, Jacob and Sarah were both a bit shy but ready to defy their new brother in a heart beat, and Matt, well, Matt was Matt. We have no angels here (Matt comes close, of course). Week days we had only Christopher and Matt. Tom was the one trying to fit in. Weekends we had both Jacob and Sarah, bringing the number to the full 6. Six mouths to feed, 6 voices to be heard, 6 very different, very unique individuals, all under one roof. When the weekends hit it felt like all of us were learning how to interact socially, not just Matt.

Each of us had our good weekends and bad. Each of us at one time or another felt left out or ignored. Tom and I were always planning for the weekends. What would we do? Where should we go? What do we eat? Matt only ate Matt foods and I was use to this. Christopher ate anything that would not move too fast, Jacob absolutely loved hot dogs (still does) and Sarah would eat only out of a can – like spaghetti. Meals were stressful at first as we tried to adjust everything to please each one in some little way. After a while it all melded together and dinner became a real meal.

Each of the children was trying desperately to fit in. Children don’t always know how to treat other children – they must be taught. Each child had to learn how to treat an autistic child – their brother Matt. At first it was just Christopher I had to explain it to. He was feeling very left out because I spent so much time devoted to teaching Matt. I had to explain to him that it was only because Matt needed me more, that his brain had been injured and all the teaching I was doing with him was to help little Matt’s brain. He understood this enough to help me teach and that gave me more time to be with Christopher as well as Matt.

Jacob and Sarah learned of Matt’s autism early on. After that initial explanation they treated him OK but underneath they were also feeling a bit left out. Problem was I didn’t see it right away. Then one day as we were on our way home (from where I can’t remember) I heard the cruelty so often inflicted by children to other children. The kids had been laughing and talking and I hadn’t really been paying too much attention to their conversation until I heard Matt make animal noises. My ears pricked up. All three older kids were picking on Matt and having him make noises of animals, followed by laughter and more requests. “Matt, say oink, oink” Matt would oblige. Matt had entered the stage of echolalia and would repeat what he heard. “Oink, oink” he would say, but as an echo, not knowing he was imitating a pig. A request to “Bark like a dog!” was returned with “like a dog” from Matt, and then “No Matt, ruff, ruff” followed by “ruff, ruff” from Matt. I listened to a few of these exchanges and my blood began to boil. We had stopped for gas and Tom was in the store. I whipped around and staring disapprovingly at each of them, told them to knock it off. A silence filled the jeep – that is until I went on what felt like a 5 minute rampage, telling them they should be ashamed of themselves, that any one of them could have been autistic and how would they like to be treated that way. Matt wasn’t their pet or their toy, he was their brother. I conveniently stopped my tirade just as Tom got back in the car.

“What’s going on?” he said as he looked at me, then at the kids, then back at me. I told him what the kids had been doing and his face began to frown-up. “You should know better than that, I am disappointed in each of you!” he said calmly but forcefully.

Not a sound was heard for the rest of the drive home. We were only 10 minutes from the house, so this was not an eternity of silence, but it sure felt like. I was beginning to feel as though I had gone over board on the situation. Where they just being kids? Should I have left it alone? I doubted myself and began feeling as if I would never get this mom-to-4- kids thing down. And I thought of Matt. Why couldn’t Matt have been just another normal kid? Poor Matt would never be able to stick up for himself. People would be inclined to walk all over him - and this thought depressed me.

Shortly after we arrived home I was surprised to see each child attempt to apologize to Matt (who had absolutely no clue they had been making fun of him in the first place) and then was even more surprised when they apologized to Tom and I. Each one did this on their own, without us asking them to. Child after child made their way slowly over with shoulders slouched, tears in their eyes, and made a short statement that showed quilt and true remorse. Wow, they had really thought about this in the last 10 minutes! They actually understood and empathized with Matt! Good for them!

I never saw that type of behavior again – ever. What I did see was more energy put forth by each of them to help teach Matt, include him in activities and give him added attention. The changes made on that one day so long ago have continued to this day. And after many years Matt did learn to stick up for himself and he learned it from all his siblings. As for my fear that anyone could just walk all over Matt, well, it will never happen – not if this crew has anything to do about it!

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.

Whiplash!

Matt was 17 and a junior in high school when I finally gave in and agreed to let him take Driver’s Education. The high school was a small rural school and did not have a driving range like some of the larger city schools. They taught the rules of the road and gave the paper exam, expecting parents to provide plenty of behind-the-wheel time at home and then as a final component the driving teacher would take each student out to drive through the county, on the Interstate, and through the small local cities close by. I was not worried about him taking the final written exam – Matt was always pretty good at memorizing rules and regulations. What worried me was the behind-the-wheel.

Matt’s first time in the driver’s seat only lasted about 5 minutes. Before I let him turn the car on I went over mirror use, how to shift from park to reverse, and where the gas and brake pedals were located. My explanation lasted much longer than his driving time. Matt got in. Although he was extremely excited and very nervous, he went through the pre-drive check flawlessly. The plan was to back up in the driveway, come to a complete stop, put the car in drive and pull back forward. Not a very complicated or long drive, but Matt is autistic and we had to go slow, using small steps so as not to overwhelm him with commands.

When he was ready he slowly began to back up. The simple fact that the car was moving scared him and he hit the brakes – hard. Whiplash to momma #1.

I talked to him calmly and we resumed the backward motion. Again, the simple movement scared him and hit the brakes – whiplash to momma #2.

After calming him down a third time Matt was able to pull all the way to the end of the driveway and actually eased on the brake. My neck was very grateful. He shifted the car into drive and took his foot off the brake. The car automatically began to drift forward, scaring him again. Whiplash to momma #3.

I explained that it was normal for the car to move a bit and he relaxed. He took his foot off the brake and put it on the gas, gunning the engine and bursting us forward so quickly I thought we would hit the tree in yard. Bam! No, we didn’t hit the tree, but he hit the brake so hard that my head whipped forward and back at light speed – whiplash to momma #4.

Matt threw the car in park, got out and immediately headed for the house. I was actually glad he had had enough – my neck sure had!

After that day, every time we went to town Matt would mimic my actions of driving; turning an imaginary wheel, putting on an imaginary break, using imaginary turn signals. His next attempt behind the wheel went smoother and before long we were driving all over the front yard. He practiced backing up, turning, driving in a loop and parking. He was getting the hang of it just fine.

The car we had purchased for this was an automatic. Unfortunately, Matt’s car could not be made road worthy and we ended up having to sell it. Less time was devoted to giving him driving lessons and he never really bugged me much about driving again. I was both happy and sad about him not getting his driver’s license. I was happy simply because I was afraid for Matt on the road. I was sad because I knew Matt had really wanted to be on the road.

I think Matt will be an excellent driver. He would stick to the rules, stay on his side of the road, obey all the traffic signs, and be as careful as possible. But I can’t simply ignore the fact that Matt is autistic. From 17years old to his present age of 24, Matt has improved his language skills. But at 17, if a police car had pulled him over he would have been too afraid to tell them who he was or that he was autistic. If a deer jumped in front of him and he wrecked, he could not have handled the stress of the situation. Would he call me in an emergency? Could he call me? Heck, we still can’t get a cell signal in half the county. What if a drunk hit him or ran him off the road? Christopher had been in three accidents before he ever graduated – and he was supposedly a normal teenager. Of course, there are also the weather conditions to consider; ice, rain, hail, wind, snow, black-ice, fog, and the list in my head just keeps growing.

Matt is 24 years old and does not drive. I like it that way – for now. He is really growing in his critical thinking skills, ability to communicate clearly, and social interactions are improving daily. Matt does not get panicked the way he use to. So, I do see Matt driving one day – and it’s probably only a few years down the road. This will require me to let go.

Every parent must eventually let go. I know I will force myself to accept this, but not until I am satisfied that he can handle the good and the bad. Parenting an autistic child takes more time, more patience and sometimes a neck brace, but the child grows into a man and eventually we need to let go. I just want to be sure that when I take him gently from the only nest he has known and let go – allowing him his independence to enjoy his own true life, that he will be strong enough to truly fly. That day will come.

Vaccines and Autism

“Your son is autistic”. These words were said calmly to me in a manner which projected foreboding. In 1988, it was considered rare; 1:10,000 chance. I could deal with that – autism was a fluke of nature. Shortly after it was noticed more and more children were autistic, and year after year the probability grew worse. Presently, 1 in 70 boys will be diagnosed as autistic, 1 in 110 children. What is causing this epidemic?

I usually avoid this topic because I am both a scientist and a mother of an autistic child and I don’t usually take a side in the debate on vaccines and autism. But I am today because I feel people need to see that in reality both sides have merit.

Let’s start with the parent point of view. For me, at least, it was easier thinking that his autism was a random fluke of nature – just one of those things. No parent likes the alternative – that they drove their child to the doctor’s office, and then held their child down so a stranger could inject a brain – inflaming substance into their young one that would forever change their life. Think about it. Do you really think parents want it to be vaccines? It is heart-wrenching. At times it can be psychologically overwhelming. I can’t see why anyone would choose to believe it if it didn’t have some basis for that line of thought.

Parents notice differences in their child closely following the MMR. The timing is right, the child has an initial onset of fever, and then new behaviors arise, coming on slowly, insipiently, one at a time in the weeks following. Don’t tell a parent they’re nuts for feeling there is a connection – they watched it occur. Something changed their child and it occurred shortly after a routine vaccination.

Now let’s look at the science. The number of autistic children is growing – at a substantial rate. The parents and communities are asking why? Hypotheses are put forth that something in the vaccine is harming the young brain and science sits up and takes notice. Vaccine or not the vaccine? Studies are devised to test the preservative – thimerosol. Thimerosol contains mercury, and yes, mercury is toxic to brain cells - a reasonable hypothesis. Yet, study after study finds no link to the thimerosol. OK, so it’s not the preservative, but one can not assume because the preservative was not the cause that the vaccine is harmless. It only shows that the preservative was not the cause.

Unfortunately, people have already taken sides and are now seeing only they want to see – the blinders are on large numbers of people on both sides. To move forward, we need the blinders to come off. Look at the relationship again and again – it’s there.

MMR was not given to my generation. I had each of those diseases as a child; measles, mumps, and rubella (German measles). These viruses are very contagious and can kill. According to the data the first 2 decades of vaccination prevented over 50 million cases of measles. Of these, over 17,000 infections would have resulted in mental retardation, and over 5,000 would have resulted in death. Mumps, which can result in male sterility after puberty and Rubella, which if contracted while pregnant can lead to congenital birth defects in the unborn child, also declined. Do we really want these nasty viruses to return to the levels prior to vaccination? Of course not! But we should not continue with present courses of vaccination knowing something is faulty in the vaccine preparation - that vaccinations to eradicate one disease has the potential to inflict another.

MMR is given as an attenuated vaccine. This means that live virus particles with very low virulence are injected into the child. This live, low virulence virus can still reproduce, but very slowly, allowing the immune system to acknowledge its presence and form antibodies against it. The viruses are grown in cell cultures allowing less virulent strains to be selected, or it can be mutated or genetically altered to get a less virulent strain. Unfortunately, it is not foolproof and a small chance exists that the virus could revert back to higher virulence. This is why attenuated vaccines cannot be given to individuals with a compromised immune system.

There are other, less risky ways of making a vaccine that only injects viral particles (just pieces). These other forms of vaccination also alert the immune system and cause the body to make the wanted antibodies. Why can’t one of these other vaccination types be investigated in studies and research?

The other problem could be in the mix. Three attenuated viruses are given in one injection. There should be studies on the risk of MMR compared to each given in a single dose, spaced apart (months preferred to weeks).

Now consider the latest research on the immune system abnormalities found in autistic children. Vaccinations with MMR began in the early 1970s. It was in the early 1970 that research on autism found an immunological correlation. Evidence has been increasing in this area showing there is some immune dysfunction in individuals with autism. More specifically, chemicals called cytokines - signaling molecules required to mediate specific types of immune responses are hyper-sensitive. This makes sense to me. Let me explain: a live virus damages neural (brain) tissue and this causes an inflammatory response. If the inflammatory response has been damaged (genetically or from the virus itself) then the damage can not be undone, at least not in the normal manner.

At 2-3 years old the brain is a very busy place, forming connections and linking up one area to another as learning progresses. Inflammation (from a virus?) causes damage to these connections. The brain must now make new connections. This is autism. In a child receiving the vaccine and for which the inflammation is handled correctly, the original connections are still intact. This is the normal child. I think an attenuated virus retaining too much virulence combined with (or causing) an immune system that has a faulty regulatory chemical is a reasonable hypothesis to investigate.

So, although I hate the debate and hate taking sides, I have decided to address this mess by saying that there is most likely truth to be found on both sides. Don’t bury your head in the sand, keep the blinders off, and keep reading the latest research. My bet is that in the end a correlation will be found vindicating both parents and scientists. I also hope both sides will find some much needed peace of mind.

Unexpected Friendships

There are certain things you just don’t expect when you have an autistic child. Things we take for granted with a normal child, like good grades, childhood friends and sleepovers, that first date, being on a sports team or in a play. Even graduation with a real diploma seems like a stretch when your autistic child is young and the behaviors and communication difficulties take up all your time.

You focus so hard on the little things that the normal, everyday stuff just gets pushed aside. If a normal activity pops up it throws you off guard – at least it did for me. When Matt first started bringing home papers from school that revealed actual accomplishments I was thrilled. I could ask him about his day all I wanted - but he couldn’t tell me. His school time would have been a complete mystery to me if it hadn’t been for the daily notes from his teachers and aids. The first time I pulled out a paper from his book bag with actual writing on it – as primitive as it was - I was stunned. There, on the oversized lined paper, was his name and address! Next were the drawings, then real math problems, and then history questions and answers. I focused so hard on these achievements that I never really thought about him having a “grade”. Before I knew it he was getting report cards with letter grades - and they were good!

Matt had two paraprofessional aids during his school years; Jane and Pat. Jane was first, staying with him from preschool to his first few years at the elementary school. Pat picked him up in 5th grade and stayed with him up to graduation. Both were very gifted and had a true love for children. Both knew I wanted Matt to do his work himself, get grades that really reflected his ability, because I needed to know what he was really capable of. Both wrote me daily messages that included the little things like, “Matt ate his first hamburger today” or “Matt went to the restroom by himself”. These are the things I lived for where Matt was concerned.

A small rural school was just what Matt needed to help him along. The class size was in the 20s and the kids all knew each other – moving up to the next grade with the same cohort year after year. In addition, Matt’s grades brought with it an invitation to join “Odyssey of the Mind”, an academic challenge competition where a team of his peers would have to use there intelligence and imagination to work out problems. Competitions included plays and problems that developed critical thinking skills. It was much more than that for Matt. It developed his social skills, brought him closer to other children, and them closer to him. Even friendships were formed.

There’s a story for each challenge I just mentioned, for each event, but this story is about friendships. The teachers all were newbies when it came to having an autistic child in their room. Each teacher from the previous year would enlighten the next teacher about what Matt’s strengths and weaknesses were, and each teacher was amazed at how well he could do in a regular classroom setting. It wasn’t enough that Matt performed academically. They wanted him to “blend in”. Each found activities that required groups and these provided ways for the other children to bond with Matt and him to them.

Bonding was not a strong point for Matt. It required social interaction and communication skills and these were always his greatest weaknesses. The regular classroom had never had an autistic child and this was all new to everyone. The students got to know Matt a little bit at a time. Pat, wanting to encourage a good relationship between Matt and the other children even used “bribes”. When a child did something nice or said something encouraging to Matt she would give them a new eraser or a brightly colored pencil. She soon found out that these gifts were not needed.

One afternoon was especially enlightening. Matt was having a hard day with schoolwork. Frustrated and annoyed at having to keep at it, he was headed for a meltdown. A young boy named KK offered to help and talked Matt through a difficult spell. They sat together at lunch and Matt’s mood became lighter as they joked around. Pat, having watched KK’s interactions, pulled him aside later in the day and handed him a gift – one of her brightly-colored pencils – as a reward for his behavior. KK, ever the gentleman that he was, declined. He looked at Pat and said quite frankly, “I don’t need a reward, Matt is my friend”.

Pat related this story to me in person when I arrived to pick Matt up from school. As she spoke her eyes were moist as if she might cry, bringing home just how much this simple act from KK had impressed her. We had known KK, his brother and his mom for several years and knew Matt and KK were friends. Matt had spent the night at his house and KK had spent the night at ours. These were both huge events in Matt’s life. KK was Matt’s first friend. Having watched their interactions myself, and knowing Matt and KK were close, I was still quite taken with his bold statement. His actions in front of the other students demonstrated to them how things should be. KK was (and still is) a very likeable young man with many friends. He was one of those kids that other children just gravitate toward. He was the role model for many of his peers and this act of friendship let others know that it just didn’t matter if Matt was different. Matt and KK remained friends all through elementary and high school and on graduation day, KK even made sure Matt was included in his photographs of himself with his best buddies.

In Pat’s telling of the story I realized 2 things; how hard Pat had been working toward enhancing the social interactions within the classroom and how one child can make a life-changing difference in the life of my autistic son. So KK, thank you. Thank you for seeing Matt for who he was (and still is) under the autism, for demonstrating true humanity, and for showing others how not to be afraid of what they don’t understand.

Of course, I know if I thanked him in person he would give me that confused look and tell me, “You don’t need to thank me, Matt’s my friend”.

Yes. Yes, he is. . .

The Devil Coaches Soccer

Not all sports activities went well. Matt loved T-ball and so did we. He loved the Special Olympics – at least until it dawned on him what the “special” meant. When he entered high school we wanted his desire to play on team to continue. Team – just the word oozes social skills, doesn’t it? So we thought about each sport offered at the high school level.

Football – no, Matt was to nice to knock someone down, not very fast compared to other kids his age and wouldn’t know what to do if he ever got the opportunity to even touch the ball. He would be tackled and not know how to deal with it. No, certainly not football.

Baseball – unfortunately no. Although Matt loved the game, the level of sportsmanship was pretty terrible. Student jocks would resort to picking on him and Matt couldn’t deal with that type of situation.

Basketball – no, not after the fiasco of basketball at the elementary level (have I told you that story yet?). The more we looked at each sport, the more we felt it would not be in Matt’s best interests – that was until we looked at soccer.

Soccer consisted of both boys and girls. There would be running and kicking, and the directions for play were easy to understand. It was a new sport to the high school and kids from all five grades could play (8th grade – 12th grade). Matt was in 8th grade and Christopher was in 12th. Christopher could watch over him and keep the bullies away. It felt right. We met with the coach and explained Matt’s needs. We asked him – more than once – if he would actually play Matt. If Matt was to be relegated to the bench then we would rather not do it at all. The coach assured us Matt would play, and he assured us each time we asked. He explained that when a game is obviously one-sided and there was no possible way one team could win, that he always put in the less experienced team players so that they could get some game-time practice. Sounded O.K. to us . . .

We went soccer shopping. The boys needed soccer shoes and accessories and we were only too happy to oblige. It would be the only time in their school years that both boys would be on the same team – we were hyped! We took them to practice and stayed on occasion to watch some of the practice sessions. There were a few instances where we could see from the bleachers that Christopher was upset – O.K., more than upset, he appeared really steamed! Each time we inquired about the problem he gave the same answer, “The coach doesn’t let Matt practice much or play”. We would soothe his ruffled feathers by telling him that we had the coach’s word that Matt would get to play eventually. Christopher was not so sure.

After each angry burst from Christopher we would find the coach and re-state our concerns, “Are you sure you will play Matt?” “Oh, absolutely! Yadda, yadda, yadda”. You know where this is going, right?

Several games came and went and Matt’s feet never touched the turf. We were getting concerned. The game at GW high school verified our concerns. The boys ran out on the field with the team following their coach to the bench. Matt is visibly excited again, hopping and pacing – maybe this time he will play. Christopher was more stationary, watching each quarter unfold. It was a new sport and the kids on our team were not yet seasoned. They were being run into the ground by their opponent and the clock kept ticking. It was obvious by the last quarter that the other team had beaten them thoroughly, and yet only the best players were still playing. No one who had sat on the bench for the last hour had gotten a chance to play. Time was running out. Tom and I fumed. How could the coach be so cruel to all those other kids? We would rather Matt not play on the team than to be on the team and not play. I wonder what the other parents thought as they too watched their children sadly sitting on the bench. Matt had been returning home after each game depressed and withdrawn - no more.

Just as we are making our plans to pull him from the team we see Christopher yell at the coach. We see the coach yell back. We see Christopher grab his jacket and yell to Matt to get his coat. We hear the coach threaten Christopher, “Don’t you walk away from me!” – Christopher pretending not to hear. “You walk off this field and you’re out! You will never play!” the coach continued. “We’re not playing now, what difference would it make!” yelled Christopher as he helped Matt with his coat. Christopher proceeded to take Matt off the field.

We were anxiously awaiting them as they climbed the steps toward the bleachers and away from the field. “What was all that about?” I inquired, already knowing but needing to hear it from him. “That SOB was never going to play Matt, he was never going to play anyone except his favorites and I wasn’t going to just stand there and let him hurt him like that!”

Now, maybe I’m not the greatest of parents, but I sure was proud of my oldest son that day. He told the coach exactly what he thought – no fear. He stood up for his brother. Right is right and wrong is wrong, and what that coach did was wrong. Tom went in to talk to the principal the next day still fuming from the previous night's game. He was going in to file a formal complaint and in doing so, showed tremendous support for the actions of our oldest son, Christopher.

All we wanted was for Matt to have a chance to play. Game after game, practice after practice, the coach left Matt on the bench. We had explicitly asked the coach if he would ever play Matt – to avoid this exact situation. All the coach had to do was tell us straight and none of this would have occurred. Personally, I’m kind of glad it did. I am still overwhelmed with emotion when I think of how Christopher stood up to an adult, risked detention and reprimand, to stand up for his little brother. I would have done exactly the same thing. Matt was initially upset, but he took his cue from his big brother and decided to dislike the coach too, telling me that the coach "was the devil". We found other activities to involve Matt - we moved on. I won’t ever forget it though. And Christopher, if you’re reading this, I know I have told you before, but I am going to say it again – you made me so very proud of you that day.

I love you kiddo.