Laundry Day

Matt did his own laundry today. The whole thing – start to finish. Doesn’t sound too impressive, but I assure you it was. I demonstrated how to sort the clothes, how much soap to use, how to turn on the washer, how to set the dryer. One run through with my own laundry and he was set and ready to go. He did each step with the pride of an expert in the field of laundrology. He hung up and folded his clothes and put them away. Three hours and done.

He can now add laundry to his list of weekly chores. He’s working toward independence and a life in his own home or apartment. First I must be satisfied that Matt will not be afraid or helpless. My list sounds so basic. Included are things like cooking meals, doing dishes, personal hygiene, doing his laundry, vacuuming and dusting. It includes grocery shopping, keeping track of basic finances, use a cell phone, how to speak correctly on the phone, interacting with others and even how to take care of pets.

Learning something isn’t just a one-time proficiency test. It requires years of practice. He has to use these new skills over and over. While he practices, I am watching. I will be looking for problems and helping him to figure out how to work through them. For example, a few months ago Matt had a coupon for 2 dollars off a pizza. He went in ordered the pizza, paid for it and brought me back the coupon. Evidently, my explanation on how to use it did not take. The next time we went for pizza I went in with him and softly told him to hand the cashier the coupon. He presented it to the cashier who took it from his hand and adjusted the sale price. Matt was shocked – it had actually worked! The surprise on his face was immediately replaced with a smile. He was very pleased with himself for saving 2 dollars.

Currently he juggles several things at once and I have just added one more. Teaching him to do these things on a regular business develops the actual skill – not unlike building a house of cards. Each skill is a card. How many cards he can handle depends on how much he practices. During a single week, Matt will be performing all of the chores I just listed. When I think of the list I am amazed – he has really come a long way. It may seem I have a maid, but you would be wrong – very wrong. Matt does not take care of me – he is taking care of himself. I do my own dishes, my own laundry, my own vacuuming – thank you very much. Matt’s chores are for Matt alone.

Matt and I have talked about him living alone in his own place and he knows why he must practice. He has a goal. Each chore is like being sent on a mission. He wants to complete his mission – success is everything. He is practicing everything on the list and some things take more practice than others. For example, learning to interact with others began at age 3 and has been ongoing ever since.

Lately, I have been taking him with me to campus once a week where he learns to converse with strangers. Still very shy around people he doesn’t know, the introductions are pretty short. I allow him his space while I am in class. He investigates the campus, finds a comfortable spot to relax and then draws. Sketching relaxes him and draws people to him. People are always amazed at how well he can capture a building or car without looking at anything. They comment and he politely says “thank you”. He has brought drawing paper and pencils on every trip since he was 4, whether we were headed on vacation or to the grocery store. It may look as if he is concentrating on the drawing, but if you watch closely you would see he is also watching and observing the interactions of others and waiting for someone to come up to him and comment.

He has a choice of places to hang out on campus. He could stay in my office. It’s quiet there and no one will bother him. When he was younger this is where I would find him. Not anymore. Now he prefers – actually prefers – to be close to other people. At the end of class I find him in the café, papers spread out, busily drawing and diagramming his surroundings. We talk a moment before heading home. Once a week we have this routine and once a week is all he desires at present. Teaching an autistic individual is a slow process.

So now he has learned how to do his laundry and he will practice this chore along with all his other chores each week. Each chore has a set day or time, leaving him much needed Matt-time to play videos, watch TV, draw, come to campus with me or maybe play with the cat. It takes lots of patience and understanding to teach an autistic individual. Their learning can not be set on anyone’s schedule but their own. Goals can be set and achieved, but don’t put a time frame on it. I can’t push Matt to learn faster – that would be adding stress. I must be patient and allow him to reach his goals in his own time.

Will Matt ever live independently? Of course! I just need to be patient.

A Wonderful Lie

Twelve years and never a lie. How many parents can say that about their children? As Dr. House would say, “Everybody lies”. Sometimes it just takes a bit longer to learn how.

Before the big event – the telling of a lie – by Matt, I had assumed he was incapable. If something happened and it needed explaining, Matt was the person to go to. When I would get after Christopher, my usual suspect in these matters, he would feed me some wild tale and all I had to do was turn to Matt and ask him if this were true. Matt never showed signs of being uncomfortable in this position. To him, the world was either black or white, and the tale Christopher wove was either true or false. “Um, I think Chris did it.”, came out very matter-of-fact. He would then provide the details and the jig was up. “You always believe him over me!” Christopher would scream, knowing “grounded” could be next on the agenda. Disgusted by the situation, Christopher would stomp to his room. I’m sure he felt betrayed, ratted-out by his little brother. It was like being in a gangster movie, the glare from Christopher could easily be interpreted as, “Look you, you squealed to the coppers, and someday you’re gonna get yours”.

The world of black and white changed to gray with Matt’s first lie. I was walking past Matt’s room and noticed something odd. Matt was playing quietly on the floor and next to him was an old WWII army helmet. The army helmet was Tom’s, something he kept in his closet in our bedroom. I stopped and looked at Matt. Did Matt actually go in our bedroom and rummage around in our closet? Matt looked up at me, waiting for me to say something. I always said something to him as I passed his room, so it was not a surprise to see this expectant look on his face.

“Did you take this?” I asked, picking up the helmet. The look on his face darkened. “Um, no”, he said softly. I tried again, “Matt, how did daddy’s helmet get in here?” I waited for the details in black and white as usual. Matt looked right at me and said, “I think Chris did it”. Somewhere down the hall a frustrated “Ahhh!” arose followed by a hardy laugh from Christopher, “I did not, Matt you little stinker!”

Of course Christopher didn’t. Matt was the one that loved the army gear. He liked to wear the helmet, the flak jacket, the coat, and carry a gun (a nurf blaster). He bought army combat video games, drew army tanks and battle scenes. I had no doubt as to who took the helmet. Matt had just lied.

Oh my! The enormity of this began to register. Matt had just lied, he really lied! I had to scramble to think of what to do next. Telling him he was bad for telling a lie would immediately result in tears and confusion because Matt thought of himself as perfect. To even imply he wasn’t was asking for trouble. His self esteem was the base on which all learning could proceed. If you told him he did a great job, he would simply agree with a “yes”. If you praised him for completing a task, he would smile and agree with you – yep, I’m the greatest. Telling him he’s smart would elicit a “Yes, I am”. So telling him that he lied would mean imperfection . . .a flaw.

Unfortunately, the terrible deed had to be done - I had to tell him lying was bad. He didn’t take well. The tears and anger surfaced immediately, and the anger was pointed directly at me. “No, momma, you lie!” Wow! Great deflection.

It caught me off guard. “I didn’t lie, when did I lie?” I stammered. He proceeded to unveil a long list of events; I said we would go a certain place and we hadn’t, I said we would buy him a certain toy and hadn’t, and the list kept going. My God, this kid had been keeping score! I was flustered. He had artfully turned the conversation around and made me the bad guy. In order to get the focus back on him I had to first own up to all my misgivings, admit I had “lied” and apologize.

We talked a long while. In the end he understood that he had lied and needed to tell the truth. He gave me the detailed rundown, the black and white, of the entire sequence from his room to Tom’s closet and back to his room. It was a relief to me to know he would still do that. He learned the closet was off limits and that he could not take things from our room without asking. He learned lying was a bad idea and being caught in a lie was painful. I learned that I needed to keep my promises better. If we told him we would go somewhere, then we would. I also learned that Matt was just as capable as any child to skew the lines of truth, and another misconception on autism went the way of the dodo. Communication had taken a new direction.

We never again asked Matt to squeal on his brother. Matt’s earlier expression of “I think it was Chris” became “Christopher did it!” – a family joke. Frisbee on the roof? Christopher did it. Toilet stopped up? Christopher did it. Global warming? Yep, Christopher did it. Christopher laughed at these tales mixed with superhuman evil doings and would even claim participation to the wildest of tales. Matt laughed at the tall tales and actually took pride in revealing the ones he had done. “No, I put the Frisbee on the roof” Matt would argue. “No, I did it?” Christopher would shoot back, bringing another round of laughter.

Lying, everybody does it. Even the tiniest of white lies is still a lie. It’s human nature. I was actually proud of Matt’s first lie. It showed him to be just as human as everybody else.

Grounded!

Doesn’t it seem sometimes like every parent you come across thinks they have perfect, angelic children? No such luck here. I have real ones. My children got into trouble, did things they knew to be wrong, pushed the envelope of parental sanity and paid the ultimate price – they were grounded.

My oldest, Christopher, could push the limits better than anyone. He was (and still is) an extremely bright boy. His teachers even suggested he was gifted and should be accelerated to the next grade. Since social ability was a big factor in our lives I told him the decision was his – he chose to stay with his friends. The problem was that he was bored enough to plan outrageous stunts and intelligent enough to pull them off. Of course, he didn’t have a naïve mother either and was caught red handed more than you would think. As Christopher got older and more cunning, Matt got older and more admiring. Christopher was his brother and no matter what, Matt always had his back.

Matt was learning some important lessons during this time; how to dress, how to form a sentence, and personal hygiene. I was teaching him these things, but observing his brother do these things gave him the added desire to learn. If his brother could do it, then he wanted to learn to do it too. Things I didn’t teach him, but he learned quite readily anyway – like how to play video games and use a computer – he learned mostly from his brother. He wanted posters on his walls and even started listening to music.

Matt observed how Christopher interacted with family and friends and animals. He watched him fix his own meals and buy his own “toys”. Matt watched him admiringly at wrestling matches, and met his friends and his girl friends. Of course, the love went both ways. You may recall that “no one messes with Matt”. That particular credo was first stated by his big brother - Christopher had Matt’s back, too.

Matt was around 8 years old when he first stepped in to defend his brother. I had grounded Christopher for something – I don’t recall what (there were so many). Matt stormed out of his room and marched up to me. “Christopher is NOT grounded!” “Yes, he is, Matt”. “NO, you don’t grounded my brother!”, he snapped back. Imagine, this quiet child who rarely ever raises his voice, arguing with me. He turned and marched to his brother’s room. Afraid to actually go in, he stood at the doorway and peered in. Was his brother O.K.? Was he hurt? No one would hurt his brother! He stood there a moment as if trying to decide if he should go in, block the doorway or let me have it again. He decided to let me have it again. The only way to calm Matt down was to apologize for having said that word. I am sure Christopher was secretly smiling.

It was unlike any argument I had ever had. Shocked for only a moment, I started to smile – my little boy was connected enough to another human being to fight for him. Were autistic children supposed to be capable of that? It’s hard to argue when you’re happy. I couldn’t contain my joy - which confused Matt. I laughed, Tom laughed, and snickers were heard from the bad-boy’s room. Matt calmed down. Anger dissipated. Life was good.

This became a normal routine. I would ground Christopher, and Matt would read me the riot act. Laughter would end it all. It was all just too cool! Matt could hunt me down, look directly at me for seconds longer than normal, and stand his ground on an issue he felt passionate about. He could defend another human being. He could clearly state his objection and did not accept compromise. This was the start of independent thought. He was thinking, feeling and expressing his thoughts and they were expressed with such emotion! How could this not be viewed as cool?

Over the years, Matt became more insistent that I stop using that word. Matt was about 15 years old when he really let me have it. Yep, Christopher was grounded again. Matt was furious and in no uncertain terms informed me that the word “grounded” was a bad word, a dirty word, on par with a 4-letter word and I was to never use that word again, not even in jest or casual conversation – not ever!

To this day that word is not allowed in our home. Matt must have related the word to the pain he saw in his brother’s eyes, or the anger on his face, or worse yet - imperfection. What ever emotion it connected too, it is as strong a connection now as when he first made it. We still abide by his wishes, not willing to upset him over such a trivial thing – the use of one little word. That particular word has new meaning now. It stands for independence.

While writing this I asked Matt if he still hated the “G” word. His brow deepened, an angry look swept over his face as he told me “Yes!” “Why do you hate it so much?” I asked. He gave me his most serious face, eyes staring directly at me as he raised his arm and pointed upward, “Because it will anger the Gods!”

So, there you have it. I am probably breaking Matt's rule just writing about it (I feel so sneaky - almost criminal!). No other word has ever elicited a response that comes near to that of the "G" word. Do I dare say it again? . . .grounded.

Sweet pea 1 and Sweet pea 2

Matt is not a big fan of dogs. Maybe it’s their size. It could be their smell. Then again, it could be their breathing – open mouths, drool, and bad breath. They tend to be pretty big in our family. From mutts to Collies to Labradors, we have always had big dogs. Matt did like watching puppies play, but he didn’t want to hold them or pet them. Cats are a completely different story.

Kittens are his favorite and always have been. The energy of a kitten at play, the acrobats in mid-air, the sweet little “meow” and the “purr”, all make them irresistible. They say that people are either a cat person or a dog person. Matt is definitely a cat person. His first word ever was “kitty”. After autism took hold, loving kitties remained. Matt’s first kitten was named Sweet pea. He loved that cat. He would hold it, pet it, and play with it. Dragging a sting along the floor would always lead to a pounce, and Matt loved this rapid, fast as lighting movement. He laughed – a sound that was so deep and heartfelt that anyone hearing him would laugh also, even if they didn’t know why. His beloved Sweet pea even went to school for show and tell, something Matt had never taken part in before.

I wish I could just limit this story to a boy and his cat and keep the joy bursting from the page. But alas, cute little Sweet pea met a tragic end. Matt was at school when we found the cat. After much debate we decided to bury the cat and break the news to him later. We had no idea what was to come from that decision.

We placed Sweet pea in a bag, wrapped her in a blanket and buried her in the yard. We were all attached to Sweet pea, and we cried while we took care of the animal. Matt returned home from school and went about the business of playing in his room. Toward evening, he went looking for his cat. It was time to tell him.

Explaining even simple things to an autistic child can be a challenge. You have to use multiple strategies - tactile, visual and auditory cues - to give them a full range of examples. After all, when they are young, you’re never quite sure as to which example will provide the “light-bulb”, or “aha!” moment. We forgot this in our haste to bury the cat. We actually thought we could explain death.

Matt clearly didn’t understand. Worse yet, he focused on the “buried in the ground” part. He looked at us and accused us putting his beloved cat, his Sweet pea, under the ground where it was dark and cold. Were we monsters, torturing an innocent animal? Sadness was mixed with hate, his sobs emanating from somewhere deep in his soul. We had no other choice but to use all the strategies of teaching; visual, tactile, and auditory. Auditory alone would just not cut it. We walked to the grave. Matt needed his beloved pet to be rescued from the cold ground. Tom started to dig. Matt’s anger lessened, tears still streaming down his face, he watched from a safe distance as each shovel-full of dirt was removed. The bag and blanket was retrieved from the hole and was carried to the deck where Matt waited anxiously, hands flapping.

We opened the bag to reveal his Sweet pea with eyes closed. We explained that Sweet pea was not sleeping, but Matt would have none of it. He reached out to pet her. It took only a split-second touch for Matt to realize there was something terribly wrong. He pulled his hand back quickly and rubbed the fingers with his other hand. You could see the “light-bulb” go on. His face at first showed shock and surprise, but it was quickly replaced with disgust and sadness. He ran back into the house, back to the safety of his room. Tom re-buried the cat as I followed Matt.

Matt needed to work through his grief and he did this by talking to himself out-loud. He would allow me to comfort him only in small doses. I had to leave his room. I listened from the hallway as he began working through it. He kept telling himself the story of his Sweet pea, from beginning to her tragic end, and each time he reached the end he would cry.

Replaying an event in the mind over and over is a natural reaction to a traumatic event. When the mind gets “stuck” on the re-play we call it post traumatic stress. We allowed only a week or so to go by before we finally arrived at the conclusion that he needed another kitten to help him move forward. When Matt saw a new baby Sweet pea, with the same markings as the first, his joy was overwhelming. Of course, he named the new kitten Sweet pea 2, eventually dropping the “2”. He still spoke on occasion of his first cat, telling himself the story of her life, but he eventually stopped - his new Sweet pea helped him to do that.

Sweet pea is now 15 years old. She still plays with Matt, still purrs and has the sweetest “meow”. She’s pretty old for a cat and she sleeps much more than she use to, but Matt is much busier than he use to be and he really hasn’t noticed - at least I don’t think he has.

Other beloved pets have passed away over the years and Matt talked himself through the grief each time. He knows what death is and that all things die eventually. He has been to funerals, he understands the concept. Explaining death to any child is hard enough. Trying to explain it to an autistic child was even worse. Death is the eventual end to life and Matt has learned to deal with the sadness and loss.

Telling himself the story of the life of an individual, be it a human life or an animal life, allows him to somehow make sense of it all. Isn't that what all of us try to do?

Does it hurt?

Pain. Determining if and when something is uncomfortable enough to elicit pain is a necessary brain function, preventing further injury, allowing us to take care of the situation, learning to decide when something is or is not dangerous. Most of us take our pain response for granted – a touch of a hot pan on the stove and we let go, grab a hot-pad, and learn to be more careful next time.

After the onset of autism, it was difficult to tell if Matt was in pain. No “ouch”, no cries, no running to mama. Whether it was the common cold or something more serious had to be determined by symptoms, as many as could be observed. If he fell, did his knees hurt? Did his hands? One of the worst things about autism is that it can rob a child of the ability to communicate pain. Their brain has to relearn through experiences by making new connections in the brain, and this takes time.

Matt was only 3 years old when I learned the hard truth about his ability to communicate pain. We were at Margie’s house, my neighbor around the corner. Christopher and Matt were similar in age to Margie’s 2 boys and were instant friends from the first day they met. Matt had just been diagnosed a few weeks before.

The kids were all playing on the swing set. It was one of those, “bet I can swing higher than you” games. Matt was watching the 3 older boys get higher and higher. The arcs of the swings seem to fascinate him. He moved closer to get a better view – a view directly beneath the path of the swings. Try as they might to slow down or deviate away, the boys were unable to prevent the inevitable – Matt was hit with a swing. He fell to the ground where he laid for only a moment. Matt was in the process of standing back up when the boys slammed on the breaks, preventing a second strike.

Blood was flowing down Matt’s face and he swiped at it with dirt covered hands, seemingly annoyed by its presence. I finally reached him and snapped him up, and headed toward the house. He fought me, struggling to get back down, back to playing. I was interrupting his view, taking him further from where he wanted to be, his squirming was relentless. Blood and dirt had mixed together and was smeared across his face, and darker blood kept bubbling from beneath the caked-on crust. Margie brought a wet cloth and I washed Matt’s face – no easy task as he was still fighting me. The cut was on his chin, a nasty one inch gash that continued to bleed. Margie brought gauze and butterfly strips and band-aids. I applied pressure for several minutes, and Margie held him tight, talking soothingly to him. We got him mended and released him back into the wild.

Matt headed right out the door and back to the swings. The boys were no longer on the swings and were engaged in other play. Matt strode over to an empty swing and lay across the seat, pushing himself back and forth with his feet at a pace similar to rocking in a chair.

Margie and I just looked at each other. “Do you think he even felt that?” Margie asked. “I don’t know” was all I could reply. I had to start paying closer attention to this new phenomenon.

I did pay closer attention. I discovered that he did feel pain but he didn’t know how to respond to it. Each time he was hurt he would swipe at the offending place on his body as if to brush it away. His face revealed confusion – not agony or fear. I would respond by going to him, kissing the injury and placing a band-aid. Eventually, Matt came to me. He would hold out his injured part (a hand, a knee) to be kissed and would insist on a band-aid. Even the tiniest of scrapes required a band-aid. Matt learned how to deal with an injury to a visible part of his body. Pain that came from within was much more difficult to deal with.

Years later, after Matt had begun to speak, I noticed him acting more tired than usual. He coughed only on occasion – but it sounded so deep, and he ran a low fever, nothing that would suggest anything worse than a simple cold to the unobservant. “Are you O.K?” His eyes a bit glassy, he just lay on the floor and lined-up his cars. He replied "yes" as he nodded. But something was wrong, and I could not put my finger on it. Where’s the energy? Where’s his usual smile?

Christopher was fighting a sinus infection and we were going to take him to see the doctor. We decided Matt should see the doctor as well. The physician examined Christopher and gave us a prescription for his infection. He did a quick once over of Matt and pronounced him to have a simple cold. Matt never coughed at the doctor’s office. As we were leaving Matt coughed - it was so deep and it rattled.

I was married to Tom by then, and Tom was an respiratory therapist. I voiced my doubts about the common cold and he agreed – we would take Matt to another doctor. We left one doctor’s office and drove directly to another. When we were taken back to the exam room I again told the doctor of my concerns. This time an X-ray was ordered. Getting Matt to cooperate was an enormous challenge, but a clean film was finally achieved. The verdict? Double pneumonia and 1 lung was completely full. Matt would need to be admitted right away.

Double pneumonia! It must have been very painful to cough – or even breathe.

An IV, a strange bed, a strange room. The ordeal must have been terrifying for him. I stayed with him, slept right there. It chills me to the bone to think what could have happened had we not taken him to a second doctor. His first doctor stopped by the next morning and apologized. I could tell by the expression on his face that he had thought of the “what if” also. Autistic children were rare back then. I am sure the doctor learned something about listening to the parents of an autistic child.

Matt responds to pain adequately nowadays – but only if you can see an injury. It’s still difficult to tell if he feels bad, or if he hurts inside. He has never complained about a sore muscle, a sore throat, or a stomach ache. For me to know if he is ill, I have to grill him. I keep hoping this particular autistic trait will eventually just go away. In the meantime, we keep our eyes open and watch for the subtle signs of pain.

Don't want to miss a thing

After earning a B.S. in Biology, I was offered a slot in the Ph.D. Program in Neurobiology and Anatomy (with full tuition and stipend) at Wake Forest University, Bowman Gray School of Medicine, in Winston-Salem, North Carolina. It was an exciting time for me, and I wanted this more than anyone knew. The problem was that we lived in the mountains of Virginia – 2 ½ hours from the school. We couldn’t move. My husband had a job, the kids were immersed in their schools, Matt was receiving services he needed, so I was willing to drive up to 5 hours a day to get my Ph.D., but I soon learned that “willingness” and “reality” were at odds with each other.

My mind was always filled with school; lectures, projects, reading assignments, exams – the list could go on and on. When I was home my mind was still on school. This limited focus soon showed itself to be my burden. I missed my husband, my kids, - a normal life.

To not waste a minute of my day, I taped the lectures, and even taped my notes, so I could listen to them on my long commute to and from campus. Tom had bought me the tape recorder as a birthday gift and I used it daily.

The year was 1998 and Matt was 12 years old. He’s our youngest, which means we were dealing with the onslaught of the teenage years, making my absence from their lives even more difficult. This was also the year that the movie, Armageddon came out (Aerosmith did the sound track). It is also the year in which Matt first began to sing.

Matt loved catastrophe movies and documentaries. He memorized every disaster our country had ever experienced. He read the books, he watch the History Channel daily and he was always anxious to see the newest movie with the latest special effects depicting disastrous circumstances. Armageddon was the newest one he just had to see.

When it came out on video he bought it and watched it repeatedly day after day, sometimes 3-4 times each day. He memorized every line and every emotion tied to each voice. This was not unusual for him. We were use to hearing repeated requests for disaster movies, the re-running of each movie multiple times, and the memorization of lines. What we were not prepared for was his voice in song.

If my memory serves me right, it was Tom who heard it first, the sweet soft melody of “I Don’t Wanna Miss a Thing” emanating from Matt’s room.

“I could stay awake, just to hear you breathing
Watch you smile while you are sleeping…while you are far away and dreaming.”

Tom came to the bedroom where my nose was stuck in a book. “Come, you have to hear this . . .” he said smiling. I followed him down the hallway – actually, we crept, not wanting Matt to know we were listening.

“Don’t wanna close my eyes; don’t wanna fall asleep…
‘Cause I miss you babe, and I don’t want to miss a thing…
‘Cause even when I dream of you,
The sweetest dream will never do, I’ll still miss you babe,
And I don’t want to miss a thing.”

Matt sang with emotion, trying to copy the singer’s voice as close as possible. I was riveted, I couldn’t move. I looked at Tom – we had tears in our eyes and smiles on our faces - we were both transfixed. “I need this taped”, I whispered. Tom quickly went down the hall and grabbed up the tape recorder. He put in a new tape and returned, ready to capture the voice of our son singing.

Matt was on the second chorus, his eyes closed, his head back. Was he playing the movie in his mind, was he feeling the emotion in the words? I like to think he was doing both.

“And I don’t wanna miss one smile…
I don’t wanna miss one kiss…
I just wanna be right here with you, just like this…
I just wanna hold you close…
Feel your heart so close too mine.
And just wanna stay in this moment, for all the rest of time”..

Tears filled my eyes. His voice cracked, the notes were flat, but the emotion was undeniable. I could barely keep from running to him, hugging him. The recorder kept taping, capturing it all.

Everyday after that beautiful serenade I played the tape. I would put a lecture in during my daily commute and listen awhile, but within a few moments I would eject the lecture tape and put in Matt’s voice. I was gone so much. I was missing so much. If Tom hadn’t heard it, how long before I would have known Matt was singing? It pulled on my heartstrings daily.

Singing! Most children do this simple form of expression and communication early in life. When Matt was young, there were few books on autism and a lot of misinformation. Back then it was thought that autistic children lacked emotion, or the ability to express themselves in song. Many parents now know this just wasn’t true. But back then, it was unheard of. When Matt started singing it was as if another door had opened and a part of the real Matt shined through.

It was easy to see he found comfort in singing - and joy. His love of music took off quickly and his voice became a welcome sound heard around the house often. Still too shy to sing when he thought others would see him, he reserved his talents for the safety of his room. A new pair of ear plugs gave him the illusion that we could not hear him if he could not hear us, and soon he was singing in the car also. Anyone traveling in the car with us, would look at Matt, head back, eyes closed and singing, then look at us and smile.

I soon came to the realization that my dream of a Ph.D. was not my only dream. More than anything else I wanted to be with my family, watch my kids grow, be there when they needed me. Matt was only 12 and still needed me. More importantly, I needed him. The next year I declined my position at Wake and sought a M.S. in Education instead. The schedule of a teacher after all is the same as a student’s, giving me the much needed time to be a mom. I don’t regret the move one bit. Being with my family, helping to mold them, watching them grow, was the most important experience I would ever have.

To this day I can not hear that first song without tears, without remembering the look of heartfelt emotion on Matt’s face.

" The sweetest dream will never do . . . And I don't want to miss a thing."

Beauty of Water

Water – an excellent tool in the desensitization of an autistic child. It can change temperature, be filled with bubbles, and create sounds (bubbling, flowing in creeks and rivers, the “plunking” sound of rocks). The level can be adjusted up (swimming) or down (a glass full). Items tossed into the water sink or float. Sound changes underwater. All fascinating qualities to any young child. Qualities especially fascinating to the autistic child.

Matt knew the sound of water. It drew him like a duck to, well . . .water. He loved it. Give him a glass of water and sit back – the experiments were about to begin. Small toys, like Lego blocks, would be dropped into the glass. Squinting, his head turned to the side, he would watch the item fall to the bottom out of the corners of his eyes. Sometimes Matt would climb onto the counter, get a glass himself, fill it and drop a toy, “plunk”, into the water.

As I have mentioned before, Matt has always loved trajectories and water was a great tool in his discoveries. He would come running when someone turned on the water, be it a sink or a tub or a hose. He watched the water flow and would throw his hands in to feel the power of the stream. If the water was running in the tub he would hurriedly remove his clothing, a flurry of movement that left behind items of clothing from his room to the bathroom. I would have to catch him before he hit the tub to slow him down. He had no concerns over slippery wet floors, but I did. Matt didn’t appear to feel pain during this stage and he could have injured himself without our knowledge if we weren’t careful.

Bubbles were an added bonus, but not required. As he got a little older he would first find a toy, or several toys, to take with him to the tub. Matt was always eager for bath-time. Toys were submerged and watched intently as bubbles of air scrambled to the surface. He studied the above water phenomena first; floating, sinking, bubbles, the sound of water displacement each time a toy was dropped. After his repeated above water observations, he would make under water observations. He hated water on his face, but allowed his ears to dip beneath the surface. Experiments in the physics of sound-waves came next as he lay on his back, listening.

Sound changes underwater. The sounds of voices are muffled and annoying background sounds are eliminated. Matt focused on the physics of water just as he had focused on the physics of gravity. He would study the problem through observation, then experiment. He would lie in the tub, the water creeping over him until it reached his ears. Slowly, he would submerse them. The sounds decreased, some sounds, I am sure, were eliminated altogether. The lowering of the noise level was always a welcome relief for him.

Many autistic children have sensory overload. Everything comes into the brain at the same level, no background noise – all fore-front noise. I can’t imagine the stress. How terrible to have to deal with so much sound! Water provided a much desired filter. If he could only see underwater, his observations would be complete. He needed a face mask and snorkel.

Summer brought heat and humidity and the purchase of a small-pool, the kind adults buy to soak their feet. Matt could lay in it for almost an hour before emerging as a prune. When we purchased a face mask and a snorkel his life took a new turn – the underwater experience! After placing the face mask just so and tightening the rubber head band, he slowly bent toward the surface. No leaks! Yep, this will work just fine.

He spent as much time peering underwater as could stand before rising up to take a breath. The snorkel was next. He practiced breathing in and out in the safety of the air before testing it under the water. Yep, this will work too.

He became a pool junky. Jump in, splash around a bit, then down to business. He brought toys with him, items that would sink, so he could follow their trail as they cut through the water and rested on the bottom. Such a little scientist! Hmm…Time for a bigger pool.

We purchased one of those large pools that require a filter and separate lining. The blue of the water called out on those hot summer days and the kids all headed for the ladder. The other kids would jump from the ladder and splash around, followed by a brief dive beneath the surface. They battled each other with smacks of their palms on the surface, aiming the splash toward their intended victim. Matt could only play this game if his face mask was on, but he would try to play. As the other children, tired of the water games, crawled out shivering, Matt was left with the pool to himself. Now the interesting stuff could begin. More room to move, less sound and activity. This is what really thrilled him, as now he could explore the bottom without legs everywhere. He stayed just enough above the water to watch the item in his hand be released then softly sank to witness the trajectory of the item to the bottom.

His love of lines and motion were satiated in water. He could see the patterns without squinting or turning his head. He could watch from a full-frontal point of view and actually see the trail as it emerged. Not every item dropped in a straight line. Some meandered their way down, swishing left or right, creating beautiful patterns in the filtered light. I know, because my own curiosity led me to watch underwater as his experiments took place. Having no mask or snorkel forced me to the surface for air, but I would repeatedly go under until I saw what he saw.

Over the years the other kids became interested in retrieving items from the bottom of a pool too. Hotel pools were the best – plenty of room, various levels of depth. It evolved into a family game. Toss a coin and retrieve it from the bottom. Of course, Matt had to watch the trajectory, the actual motion of the coin as it sank, but other than that he played the game with us, after all, we had chosen to enter his world.

Autistic children may have their drawbacks in communication and social skills, but they are deep thinkers with analytical minds – at least I know this to be true for Matt. The amount of time devoted to inquiry is astounding, yet many people just can’t see it. They don’t see past the odd behaviors to simply ask themselves “Why”. To truly reach an autistic child you first have to be open to discovery. There was nothing wrong in Matt’s ability to think – actually I considered his brain to be working overtime.

In entering Matt’s world I discovered more about the world around me. They say that beauty is in the eye of the beholder. To Matt, a meandering line through the water back-lit by the sun was a beautiful thing to behold.

I couldn’t agree more.

Ouch! Not Another Lego!

Midnight. The house is quiet, children are sleeping, pets are sprawled out and snoring, the house is dark and tranquil. "Ouch!" followed by a fury of words I won't repeat, snaps through the still air. Another Lego block has cunningly found my bare foot. Why do I keep buying these things? After the hopping stops and I rub my foot, I remind myself that these little booby-traps are, well . . . needed. I tell myself to suck it up, put the block in the bucket and just let it go.

Lego’s - the bane of parents everywhere and one of the most loved toys of children. We started with the big blocks (were they softer on the feet?), but soon went for the smaller version. Every one of our children loved to build. They built the item on the cover, then a few days later, would tear it down and design their own contraptions. My best friend, Carol, had already raised her boys and had a massive bucket of Lego blocks to donate to my kids (how many did she step on?). We had thousands and many more were bought almost routinely. Christopher was the first to enjoy these sneaky little blocks. They exposed his creative side, his need to build, and even improved his reading skills. The directions for building are always in both written and diagram form, allowing a child to work through the schematics and be triumphant in completion.

It was only normal for Matt to fall in love with them too. It started simply enough; Matt lining- up his cars, glancing toward his brother out of the corners of his eyes, observing Christopher sifting through blocks to create castles. Christopher would occasionally ask him to hand him a specific Lego. Confused at first as to what his brother wanted, Christopher would describe it again, and eventually crawl toward the block he wanted and pluck it from the pile. Matt learned by observation and finally understood the repeated requests. He would watch his brother snap and place; decide on a block, snap and place. It was methodical and creative - the finished product a recognizable masterpiece of the childhood imagination. Soon after, Matt picked up a Lego, and gave it to his brother. This was soon followed by attempting the snap - together process himself. Before long, both were immersed in the joy of Lego blocks - the building had begun.

In the beginning, Matt built trains (of course). He would dig and dig through the bucket for each piece. No instructions, no diagrams needed. Experimentation and observation allowed him to see how something was constructed in his mind. The pictures in his head must have become very complex, as it was during this time that his drawings took on a complexity and detail not seen in children his age.

The search for the right piece always followed the same sequence of events. 1-Plucking the first block from the bucket. 2-Digging. 3-Dumping. 4-The hand-off. 5-Completion.

Plucking the first block from the bucket

Most of the time the first block was found quite readily. Usually, the architectural design required a base-plate and these were fairly large and easy to find. It was the next few blocks that always seemed to be elusive, and thus initiated the digging.

Digging

The more blocks placed, the harder it seemed to find the next one, and the digging in earnest began. The sound of displacing Lego blocks is easily recognizable - a high "chink-chink" sound that could be heard throughout the house. Depending on the size of the project, the "chink-chink" could last up to an hour. Frustration and determination could only be bore so long before a new sound emanated from their room - the inevitable dumping of the bucket.

Dumping

The new sound was like the crashing of glass on the floor, but not as high pitched. Once the bucket was dumped, the Lego blocks were spread across the floor in a semi-thin, easier to hunt through, layer. We're talking thousands of blocks here. The spreading across the floor literally covered every available bit of floor space, trapping each child in their own small area, and thus, the need for the hand-off.

The Hand-off

The teamwork and communication exchange was my favorite part. Christopher would ask for a piece, Matt would hand it to him. Scanning the floor, he would ask for another piece but Matt would inevitably need that specific piece too and would reach it first and place it on his own masterpiece. This would cause a "Hey, I wanted that one!" from Christopher and a laugh would erupt from Matt. Another race to a piece, "Ha! Got it!" from Christopher and another laugh from Matt. Christopher intuitively knew how to make Matt laugh each time. His comments were always in a "fun" voice, never harsh or condemning.

In the later years, when Matt was capable of words, the exchange would go both directions. Matt would grab up a piece and shout, "Ha!" and Christopher would feign disgust, "AGGGH!" When Christopher retrieved that long sought after piece first, Matt would feign disgust, and Christopher would giggle to himself. It was an intricately choreographed dance of wits.

Building design evolved rapidly. As I stated before, the first projects were simple trains, but that didn't last long. More elaborate trains soon appeared. Hours upon hours of Lego building. Both boys could sit in the same room, hunting for pieces, interspersed with the occasional request (and sometimes denial) for far-flung pieces. They appeared to move together like a well oiled machine, handing off blocks, sifting, handing off blocks. It was really quite amazing, this comfortable bond between them. Eventually, as skills improved, the desire to make new and larger objects (planes, ships, towers, castles) grew. Every Christmas and birthday brought a request for more Lego kits.

The bucket slowly filled to a heaping rounded mound. This was no ordinary bucket. This bucket was a king-size, rope-handled, monstrosity that could hold 2 small children if needed. Get the idea? Thousands of Lego blocks, absolutely thousands.

New kits became available for trains, but most of the time the price tag was beyond our financial capabilities. Matt would have to use the pictures on the pamphlets to make the objects from the blocks he had. Small kits that were purchased, which came with instructions, intensified his desire to do it exactly right - the need to be perfect was absolutely intense. He studied, he tried, occasionally failed (but only when he was a newbie), tried again. Eventually, Matt became the Lego Master (not to take away from Christopher's title of Lego Ninja). Jacob and Sarah would play on occasion, but they were not addicted and could turn their attention to other games and activities. Christopher could put them down to do something else for only a short time - he needed to return to complete the job eventually. Matt couldn't walk away.

When a task began he had to see it to completion and his hands whirled and twisted and darted out and back, picking up blocks and placing them just right. He could open a new kit of moderate size, pour out the blocks, open the instructions and complete the kit in 5 minutes. FIVE MINUTES! On the occasions where we could afford the extravagance of a large kit, it would take him maybe 6. Returning from shopping, Matt would hurriedly walk to his room and emerge with the completed project triumphant in his hands before I was finished putting groceries away.

Happy and proud of his accomplishment he would then hide the completed train, ship, plane or car in a dresser drawer he reserved for such treasures. The drawer filled up and another drawer was readied (by tossing all his clothes on the floor). He hid them from the Lego Ninja, obviously he wanted to make sure they would not be taken apart and used for other projects. Many of Matt's constructions used Lego’s from breaking down Lego Ninja's collection (and yes, of course it pissed him off, but he dealt with it, and for that we were truly grateful!).

Ah yes, Lego blocks. Simple little blocks that taught interaction, manual dexterity, reading skills and the deciphering of schematics. It enhanced creative play and required rigorous precision. It provided the venue for the bonding of brothers. Lego blocks initiated the slow demise for the lining up of toys. It help minimize hand flapping -allowing it to commence only during the scanning of the Lego’s spread across the floor. Matt's hands became much too busy plucking, snapping, sifting, and digging, to flap. I watched Matt mimic normal behavior and got a glimpse of his desire to emerge from beneath his autistic exterior.

The years have gone by and Lego blocks have been stored away. Rooms have been remodeled, even new floors put down. Yet, in the middle of the night, about a year ago or so, I walked quietly down the hall in my bare feet and . . . you guessed it, stepped on a Lego. One of the cats probably found it in the recesses of some dark corner and batted it into the hallway (or had it been hiding away biding its time until I least expected it and set a trap?).

Either way, when I think of Lego blocks I think of the look of intense concentration, the whir of hands, the sounds of laughter, and the smile of a child triumphant. Lego’s - are they painful to the unsuspecting foot? Yes!

Still . . . .you gotta love’m.

Memories and Poker

You have heard of Temple Grandin, I am sure. A very successful, very well known autistic woman who has provided the autism community much needed in-sight into the workings of the autistic mind. How wonderful she can remember her early years. Matt can not.

Matt has changed dramatically. I consider him a success because of the obstacles he has overcome. Unfortunately, he is not done with the challenges set before him. Matt is still . . .becoming.

He was classically autistic at age 2 1/2. Flapping hands, spinning toys, twirling, lack of speech or eye contact, lining up cars, "inappropriate laughter and tears". Upon learning to speak he used echolalia - the constant echoing back of something that was said to him. He hid under chairs and tables, behind furniture, had not learned bowel control, and ate only items from a very limited list of foods. He spent a lot of time in the safety of his room, away from others and noise. Yep, classically autistic.

Yet now I see a young man that laughs with others, has interactions and communicates verbally very well. Gone are the flapping of hands, the spinning, the twirling, the downward cast of the eyes. If he knows you, then he looks directly at you when speaking. If he doesn't, his eyes flicker away and back during the conversation, as if trying to gauge if it is safe. There's no echo in his speech patterns. If he doesn't understand, he'll provide the expression of confusion and say "I don't know". His sense of humor is amazing, always ready to give comic relief. There's no hiding. No more lying on the ground in protest.

Each autistic behavior slowly gave way to new behaviors, some challenging, some not. With the disappearance of an autistic trait also came the disappearance of memory for that trait. I didn't realize it until after it had already occurred several times. I would remind Matt of some event and he could not recall it. Again, much later, I would ask, "Remember when you use to do . . .?" and again the reply would be a frustrated "No". When he was around 12 years old we talked about it. I had caught Matt crying quietly in his room. Sitting next to him and placing my arms around him, I inquired as to what was the problem. He stated simply, "I can't remember". At first I thought, "He's crying and doesn't know why".

I was wrong. After pushing and pulling to get to the problem it finally dawned on me - his memory of himself was fading and it terrorized him.

I suppose a person suffering from Alzheimer's disease would understand better than anyone the terror of knowing your mind is going. Matt's memory for data was still functioning - and at top speed. It was the emotional memory that was deteriorating. He could not remember certain things in his past - like twirling, or shadow dancing. He couldn't remember ever having flapped his hands. When anyone brought these things up in his presence, or within hearing distance, he would push his mind to recall what they were talking about and could not find it in his memory.

No one I have ever met remembers everything about everything. Our minds do not work that way.We pick days or events that have emotional significance and store them away, everything else goes into the trash. We store trash too, but we can retrieve it for only so long before it is buried deep within our mind. This is the basis of the mental-health profession. After all, psychology and psychotherapy dig in our trash, bringing what it finds back to the surface - the main storage area of our memory.

Matt could remember trips and movies, and songs from the immediate past, but not a memory survived of his classically autistic self. He felt as if he had not lived prior to today. He was in mourning of his own memories.

I had to try and help him through this scary time, and I needed to tread carefully. I started slow, explaining to him that I, too, could no longer remember much about my days as a young child. I told him it was normal to let some things go. I then told him for the first time what autism was, adding that he was learning quickly and that he was doing very well and was getting better. Matt needed to hear it. It made sense. He was becoming aware that he was different, that his siblings acted like the people on TV and in the movies - whereas he did not.

Matt was entering puberty. He grew like a weed, his blond hair slowly turning a deep brunette, his voice cracked - then deepened. His outward appearance was obviously changing. Is it such a leap to think his mind was changing too? Do you remember your puberty years? A confusion sets in as to who you really are. You become self aware. You look to your peers for clues on how to act, what to say, what to wear. You secretly believe your friends have the inside track on behavior and taste. You mirror who you are with, trying to fit in. Matt relied on his siblings, mostly his older brother Christopher, to show him how to act and dress. He wanted to be just like him. He began to like the same video games his brother liked and had his back on every argument with me (a later blog, I'm sure). Where before I had picked out his clothes each day, Matt was now deciding these crucial elements himself, choosing items of clothing that he saw others his age wearing.

Could it be possible the hormones flooding his brain during puberty actually enhanced a self-awareness that had been lurking beneath the surface? Was the loss of memory of who he was related to the new connections the hormones initiated? I like to think of it as a pruning of the dendritic tree to allow room for new growth. The old connections to classically autistic behavior were being pruned, replaced by newer, stronger connections between the emotion and learning centers of his brain.

Over the years I have talked openly to Matt about his autism. We talk in private, secretly discussing changes in everything from brushing his teeth to how to answer a phone. He understands and he tries to modify his behavior. His behaviors were modified during these years not because I wanted him to change, but because he wanted himself to change. I will love him as he is, as he has been and for who he will be. I have no unrealistic expectations (hopes and dreams and goals to pursue, but nothing unrealistic). It is Matt who expects himself to be perfect - always has, always will (another blog topic for later).

A few years back at Thanksgiving, just after dinner and setting up for the annual poker game, I heard Matt sobbing from his room. My heart instantly ached. I went in and sat down. He waited for me to ask what was wrong, then burst into tears as he replied in a desperate, heart-wrenching voice, "I'm different!" followed by "I hate my brain!". His eyes glanced toward the poker table. Matt had never played cards with us at Thanksgiving. He had never taken part in our family poker night - too much noise, to much sensory overload. He had always chosen the safety of his room. He had always been different. He didn't want to be different anylonger, but he was unsure how change.

His sad eyes, his sobbing voice and his gesture all screamed at me, "He wants to play!". He had been watching our poker ritual from afar for years, and was always invited to play. Up to this point, he had always refused, declining in a polite, "No thanks". Could this Thanksgiving bring a new response? I asked, "Do you want to play poker?". To my surprise he answered a resounding "Yes!" Smiling, my heart beat racing, I lead him to the den. Matt was greeted with high-fives and smiles all around. His siblings provided a fury of encouraging remarks and funny quips, immediately putting him at ease.

That night, Matt learned to play poker. More importantly, Matt chose to interact with a very noisy group of people, learn something new, and take a leap into the unknown. He conversed (short and to the point), he played, he provided comic relief, and he dealt with the noise and the commotion of the group. This was his family and they wanted him there, wanted him to be a part of something special.

At the age of 22, Matt bravely chose to step out of the safety of his room into the unknown. He entered our world.
Hello, Matt, we've been waiting for you.

Shadow Dancing

I love summer. The trees and grass are green, the flowers are in bloom, the air is warm and the kids play outside. Having four children over run a small home can feel like living in a shoebox. Everywhere you turn, a child is running, hopping, or twirling by. During the summer, you just open the door and out they go, taking all that energy with them. There were balls to throw, a private area of woods to hike, and creative minds to use. Sometimes we played with them, sometimes we sat exhausted in our chairs and just watched. Tom worked 3rd shift and I worked 2nd shift. Our jobs could be physically and mentally draining. Children can be physically and mentally draining as well. We grabbed the chance to sit down whenever we could.

And so it was one of those bright, sunny days where we were all outside. The older boys were actively engaged in some game devised to torture their sister, Tom and I were sitting in the shade on our old deck and Matt was in the sunlight twirling. We noticed his usual twirl had evolved into a dance of bending, stretching, lying down on his back - legs straight in the air, and then quickly jumping to his feet and stretching again. The dance was so elaborate that it had to mean something. We watched as he repeated the sequence. We had a new mystery to be solved.

We put our chairs closer to the edge of the deck, hoping to get a better view. Matt twirled. He loved to spin. He would twirl himself until dizzy and then just fall to the ground. A few seconds later he stood up - and very precisely arranged his arms and legs and glanced at the ground behind him. Each time the dance move changed, he looked behind himself at the ground. Ah ha! He was watching his shadow!

We started watching his shadow. The first few moves left us puzzled. Then we saw it! The letter "C", then the letter "D", followed by the letter "E". Matt was using the bright sunlight to cast a shadow alphabet. We couldn't turn away - mesmerized by his precision. When he reached the letter "W", he laid down on the ground, stuck his feet straight in the air and pulled the crotch of his shorts upward. We busted out laughing. What a . . . creative (?) way to show a "W".

We knew Matt was learning the alphabet, but we had no idea he was so creative in his thinking. Autistic children are said to have no independent thinking, no creativity. Yea, right. What do you call this beautiful expression of letters? Matt was 4 years old and he didn't speak. Most kids his age were singing the alphabet. He couldn't sing, so he danced.

Sarah wandered over, disgusted with her 2 older brothers who were picking on her. Jacob and Christopher were boys and Sarah was a girl and girls can't be in their club, can't play combat games, or hang with them. They had a boys club - no girls allowed. Tormenting their little sister was an ongoing mission at their age. So Sarah trudged over to where we were and watched Matt. Always one to jump in, Sarah walked up close to Matt (but far enough away to give him space) and asked Matt to do his alphabet again. She watched and learned. Soon, Sarah was doing the shadow dance right along with him. He would glance at her now and again, but he continued.

The other boys were curious. Sarah never came back. How could they possibly torture her if she didn't fall into their trap, and return begging to be allowed to play? Their plan foiled, they slowly made their way over and stared at their sister and Matt dancing in the sun. They looked at us quizzically. We explained what was happening and told them to wait for the "W". When the letter "W" arrived, Matt and Sarah dropped to the ground, feet in the air, Matt pulling on his crotch, Sarah (whose shorts were too tight for that), trying to improvise using her hand. We all burst out laughing and continued to the point of tears. You might say, "a good time has had by all . . .".

Everyone was curious. Everyone wanted to communicate with Matt. Watching him shadow dance was like seeing the SOS scrawled on a beach from high overhead in a plane. Matt was sending us signals.

I wish I could express adequately how it felt each time a myth about autism was crushed to dust. The list at the time Matt was diagnosed included inappropriate laughter and crying (debunked), no creative play (debunked) no communication skills (debunked). What do experts know? They see the child for 30 minutes to an hour each visit. Parents watch and listen all day - every day. My advise to you? Look for it. Watch. Listen. The autistic child is feeling and communicating.

A parent's job is to decode the signals. And believe me, the joy of having broken just one code will be enough to sustain you until you break the next one.

Losing our naivety at K-mart

I live in the country, about 20 miles from the nearest town. The town was in the beginning stages of growth and rumor had it that it would soon have a K-mart. Wow - a real honest-to-goodness K-mart! After the store opened it became a favorite destination to shop. As I have said before, we lived paycheck-to-paycheck (of course we did - we had 4 kids!). A little money and a store that had a bit of everything - an irresistible combination. Our kids loved shopping - mostly because it was such a rare event. While we shopped for what was needed, the kids would explore the toy section and the videos. Someone was always with Matt - no shopping alone, ever. Matt would go with his siblings or wander with us.

When all the kids were young we shopped the toy department with them. The problem here was that we fell into a routine. Whenever we made the trip to K-mart, the kids got something (usually a cheap toy or video). Routines were mentally and physically hard to break. On the occasional breakdown of routine we had to deal with the inevitable sorrow and protests from Matt. Our lives had been built on routines.

One fateful day we broke a routine and our view of the world changed forever. It happened at K-mart.

We needed some item - my memory fails me as to what exactly this necessary item was - and we needed to stop at K-mart. It was to be a short stop, no money for books, toys or videos. Just run in and run out. We knew we would most likely see tears from Matt - he expected something to be bought for him - but we just didn't have the funds. We had given warning to all the children that we just could not afford to buy anything extra (was it before a payday?). The kids understood - they had been told this type of thing before. We allowed them to look and explore the toy department while we ran to get the necessary item.

We were back to the toy department in less than 5 minutes. K-mart did not have the necessary item and we needed to look elsewhere. Matt had already grabbed a toy off the shelf. I countered, " not today" and put it back. Was it a truck? I forget. What I do remember was that it was outrageously expensive and there was no possible way we could buy it.

Matt promptly laid down on the floor. In the 60s, this was a popular method of protest. Trying to stop some type of action by others, a group of young college students would lay down on the ground and refuse to move. So it was with Matt. He refused to move and the protest had begun.

A bit of context is needed here. Matt was 6 years old. His vocabulary was improving everyday but his speech was confined to echolalia, a type of speech pattern where he echoes back what he has heard. Sometimes he echoed his cartoons, most times he echoed what someone had just spoken to him. His ability to express himself was still very limited, and he used phrases or words that seem to qualify for the emotions he felt. He did not fully understand the majority of words he spoke.

Back to the story. Tom picked Matt up squirming and fighting. We were at K-mart. K-mart meant toys. His toy was being left behind. What did we think we were doing? The protest intensified. Tom put Matt over his shoulder and we headed for the nearest exit. To our surprise, Matt yelled out, "Help me! Please, somebody help me!" interspersed the cries of "NO!". The store was filled with people (after all, K-mart was the new place to shop) and all of them looked our direction, some with disgust on their face, some with worried expressions. Matt repeated his plea several times. yet, no one came to his rescue. No one inquired as to the problem. Not a security guard, not an employee, not a concerned citizen. No one.

Let that sink in a moment . . . .

We made it back to the car and tried to sooth Matt's feelings by promising him a return trip on payday (and promises HAD to be kept). Slowly Matt settled down, but it was a nerve-wracking trip back home. What ever that necessary item was, we evidently didn't need it that bad.

Tom and I were in shock. We were aghast! No one had attempted an inquiry, or even better, a rescue. What if we were strangers abducting this child? What if we were child molesters, or the sellers of children on the black market? What if we were deranged people looking to murder an innocent child? Unspeakable thoughts were whirling around in our minds at unbelievable speed. Anyone, and I mean anyone, could grab a child from the toy department. Reality was sinking in - and it was all so overwhelming.

We realized that the world doesn't work the way we thought. Children are at risk, even in plain view of others. Vigilance on our part became THE top priority. No more leaving Matt with his siblings to explore the toy department. No going into the men's bathroom alone, no leaving him with siblings to go the ladies bathroom - he would have to come along. Our lives changed that day. It was a wake-up call to just how vulnerable an autistic child is to the creeps out there. He couldn't fight back, he couldn't explain who he was or even give an address if someone did come to his rescue. If he got lost, he would not be able to ask for help. If he cried and pleaded, no one would care.

Routines changed. The frost on the back door that had been the writing pad for learning about family and home items became a teaching moment for address and phone number, address and phone number, address and phone number. We taught him the names of roads close to home, the number for the police, the phone numbers for our places of employment. We practiced him saying his name, his age, and the phrase, "I am autistic". The veil of security had been raised and we were on a new mission.

It may seem as if we were too naive. But this was the early 1990s. We believed people were basically good, that lost children were found, that abductions were rare, and that they only occurred in the big city. It was also a time when autism was considered rare and the majority of country had no clue as to what that word even meant. There was no support group, no other parents to share ideas with. No real Internet (not like today's Internet). We were learning the hard way - by experience.

Talk about modifying behavior! No one's behavior was modified more than that of our family's. We shed our naivety and became more vigilant, protective and more observant of our surroundings. Our other children became the officers of our family security force. Everyone played a role.

To this day all of our children are protective of Matt. All of them would step-in in a heartbeat if they felt Matt was in any danger - from any source, be it physical danger or verbal assault. I could never have imagined the benefits from that single event. But I look back on it now and see that it was truly the start of a sibling bonding process that now is a source of great pride for Tom and me. Even our kids' friends became an extended arm of security. Now, we don't worry as much. We know our kids, our relatives, and our friends would all step in.

No one messes with Matt - no one.

Modifying Behavior?

When you read all the treatment articles, you get the idea that your child's behavior MUST be modified. We tend to disapprove of behaviors that seem out of place in our culture, like hand-flapping, crawling under tables and chairs in public places, or expressions of defiance. What you don't read, is how the behavior of all those in contact with the autistic person must also be modified. It can be a matter of protecting your child or sometimes, mental survival.

Life will never be the same after autism. Nor should it. If you think about it, life is never the same after having any child - even a "normal" one. They don't have instruction manuals, so you learn as you go. The behaviors we change in ourselves may be different, but we all change upon becoming parents. What I find interesting is that with an autistic child, you watch others - some not even related - change too.

Example 1 - A simple Bus Ride to School
We'll start with the bus ride to and from school. Matt had this "thing" about being first in line. When ever we went somewhere, Matt had to go first. First to get in the car, first to get out. First to go in a door, first to go out. By pure luck, Matt even got on the bus first each morning - he just happened to be the first address on the bus's morning route. His driver, a gentle giant of a man that was brave enough to drive a school bus in his retirement, bonded with Matt immediately. We called him, "Mr. J".

Matt came home one day upset and in tears. Mr. J explained to me that when the bus arrived at the school for the return trip, that the other teachers had brought their students out before Matt's class was released, and these same students got on the bus first, before Matt. When Matt was brought to the bus he didn't even want to get on, his tears flowed like a river. It was terribly upsetting to Matt to deviate from his routine, but his tears were even more upsetting to Mr. J.

The next day Matt was all smiles as he leapt from the bus, practically dancing his way up the driveway toward the house. I looked at Mr. J quizzically. He informed me that the other teachers brought their students out to get on the bus and he refused to let them on until Matt arrived. He informed them that Matt was to be first on the bus from then on.

Behavior modification . . . the teachers, the other students, even Mr. J's. It was a trend that soon became the norm.

Example 2 - Matt's first day in a regular classroom.
Matt had a homebound teacher his first year of services, then attended a school out of district for the next 4 years. In his last 2 years at that particular school we had him spend parts of his day in a regular classroom. His paraprofessional, Jane, would go with him each time and he seemed to be handling the transition fairly well. His next IEP meeting brought a whirl of changes. We were wanting Matt to enter a regular classroom permanently, and we were transferring him back to our own district. Matt would need a paraprofessional all day. Someone to keep him focused, calm his nerves, teach him routines, etc. We had it all in writing, in that wonderful legal document, the infamous IEP. As part of the transition I wanted to hold Matt back a grade. He was entering a new world with new routines and new faces. At least the material covered in the class should be familiar, something he could do well, and raise his self esteem. Thus Matt entered the 3rd grade (again). He was 9 years old.

His first day was a lesson in behavior modification.

His new teacher, Connie, had been my oldest son's teacher and she was familiar with Matt (I had brought him with for parent-teacher conferences). A sweet lady with a genuine love of children and excellent, creative teaching strategies. The principal, Leon, didn't know Matt.

We walked into the classroom and looking around, I saw no signs of an aide. "Where's his aide?" "They don't have one for him", Connie replied. "You can't teach the class if Matt has no aide, it's unfair to you, to the other kids, and to Matt." I headed for the principals office. "He doesn't get an aide just for him. We'll wait and see if the classroom needs one. If we do need an aide in the classroom, she'll help all the children, not just Matt - he won't have his own personal aide", Leon informed me - using that "I am the great and powerful OZ" voice. We argued. He wasn't budging, nor was I. It was time for behavior modification - Leon's.

I left, knowing that the 3rd grade class rooom was about to undergo Armageddon. I drove home and upon walking in my door, immediately picked up the phone and called the head of the school board. I had an IEP - a legal contract of how my child would be educated and I was ready for a fight. She defused me. Her voice sincere as she assured me she would investigate the problem. I spent the rest of the day worried, waiting for the time I could go back to the school and rescue Matt.

When I arrived you could see the relief in Connie's eyes. Matt had refused to sit in the chair, preferring to lay on the floor in defiance. He had locked himself in the bathroom for hours. He cried, he withdrew. She had no time to teach her class. The other students were left to watch the emotional collapse of both Matt and the teacher. It had been one hell of a day. The principal caught us on the way out and sheepishly announced that an aide would be there the next day.

The next day Jane was there! I'm sure she was worried, having heard about the previous day's events, but she showed no fear. She knew Matt, and more importantly, Matt knew her. The day went beautifully. Matt did all his work, stayed at his desk, and completed the day uneventfully. See? Told you he needed an aide . . .

Whose behavior had been modified? Certainly the principal's. He was all smiles that afternoon. Certainly the teacher's. She was able to teach and show all the students the attention they deserved. Definately Matt's behavior. Simply giving him someone to help him focus on the work and off of his fears - a new school, a new room, and new people - had helped tremendously. The principal talked to Matt almost everyday after that, always smiling. Connie paid special attention for signs of distress and would call if she feared a problem. Jane kept Matt safe and focused. Feeling safe allowed the learning to take place.

Matt became an honor roll student that year, building his self esteem. Me? Well my behavior was modified too. I found I could go from "pleasant and concerned mom" to a "woman to be dealt with" in 2.3 seconds when my children needed me.

So don't be afraid of change. Change can mean righting a wrong, learning something new, taking the next step. Allow your own behavior to be modified along with your child's. Teach others about what's needed, stand up for your kids. All parents want what's best for their kids, but sometimes we allow others to convince us they know better. In the end, it's the parents that initiate change.

T-ball and M&Ms

The warm breezes and smell of fresh cut grass each spring brought with it the sign-up for spring sports. My oldest, Christopher, had decided to play baseball. We practiced batting with him in the front yard as Matt circled the perimeter, watching in his way. To look at him you would think he was oblivious to the world around him, but we knew better. If you glanced his way on occasion you could catch his quick scan of the situation. There was, after all, a ball that would take flight - and we know how much he loved a good trajectory.

On the day of the sign-up, as we sat on one of the picnic table benches near the door at the elementary school, awaiting our turn to complete the sign-in process, we were taken by surprise when Matt revealed he also wanted to play ball. It wasn't a clear "mom, I want to play", it was more a change in his facial expressions, his eyes darting from his big brother to me, then back to his brother. A combination of gestures, simple words and longing looks suggested Matt really, really wanted to play ball too. I didn't know what to do. Christopher and Matt are 2 and a half years apart in age and Matt was just a little guy - not old enough to play baseball.

I was trying to explain this to Matt when a tall, young man walked up. He had witnessed my failing attempts to console my son and invited Matt to join his new T-ball team. His name was Dennis. Dennis didn't know Matt - no one at Christopher's school did because Matt attended a different school, out of district, to receive special services for his disability. I explained this to Dennis and added that I didn't know if he would be allowed to play. Dennis asked, "Can he run?", I nodded my head. "Then he can play!".

Thus began the T-ball years.

Step 1 - Teach Matt how to hit.
Silly parents that we are, we assumed that what we needed to teach Matt was how to hit the ball. We had Matt stand, bat in hand, and tossed him a ball. As the ball left my husband's hand, Matt turned his head as far away as possible so he could view the incoming trajectory out of the corner of his eye, squinting. Smack!
Cool! Matt can hit. We were ready for T-ball! We were so naive.

We felt sure Matt would hit the ball and run like the wind at his first game. He had been marking days off the calendar all week and was jumping - literally - with excitement come the big day. He ran toward the ball field, proudly wearing his game shirt. As he awaited his turn he would march back and forth, keeping a good distance between his team mates and himself. Sometimes he walked in small circles, talking to himself and darting his eyes toward the T when someone would step up to bat.

We watched from the bleachers as each player stood at home-plate and tried to hit the ball off the "T". We were anxious to see Matt play - to be involved in a TEAM sport, something the experts told me he would never do.

Finally, it was Matt's turn at bat. He swung . . . and hit the "T". He swung again - swish, nothing but air. Swung again - hitting the "T" and small portion of the ball, just enough to knock it off the stand. It began to roll forward, and yells of "run" arouse from the crowd. Matt ran to first base, turned, and to everyone's surprise, ran right back to home-plate, where he was pronounce "out". Oops . . . we forgot to teach Matt how to run the bases!

Step 2 - Teach Matt to how to run the bases.
You hit the ball, then you run here, then here, then here, then home. The look on his face said it all - "are you nuts?" O.K., second attempt. The bat hits the ball, the ball goes flying and you run from base to base and try to beat the ball to home plate. The look on his face? "My parents are loons". Third attempt. We need some bases. We grabbed some typing-paper, numbered them in large black numbers, 1,2,3, and one for "HOME". Then we placed each sheet on the ground in a diamond, each resting on the grass where a base should be. We had Matt stand at home-plate, gave him a bat and pitched a ball toward him. Smack! To the calls of "drop the bat" and "run to #1", Matt dropped the bat and ran to number 1, then turned and ran back to "HOME".

This would not be easy. We took him by the hand and walked him from base to base against his will. This will never work! You can't just pull him from base to base until he gets it. His will was probably stronger than mine - so we could do this all day and in the end, he still would not run the bases. Suddenly, I got an idea, M&Ms. Bribery!

Sure enough, Matt would run from base to base to receive a candy reward. M&Ms were his favorite candy - especially the color green. Standing at second base with a handful of M&Ms brought about the desired behavior - running from first base directly to second. After several successful trips around the diamond we were ready for the next game. On game day, I was taking no chances - we bought more M&Ms.

We told Matt he could have the candy after the game if he could run the bases. The next time Matt was up to bat he hit the ball and ran to first - safe! On the next hit Matt ran to second - safe again! On the next hit Matt ran to third - safe? Oh no, he's out!. Go back to the bench. Yeah, right.

Nothing could keep him from his mission to complete the run. No one could make him leave the field until he touched that plate. Game play was halted as we tried to get Matt off the field. We had taught him to go in order, 1, 2, 3, home. He couldn't bear anyone trying to interrupt the sequence. NO, no, no. His protest was obvious to all as he laid down on the ground and wouldn't move. By that time, my husband, Tom, had gotten down to the field. He picked him up and carried him off the field toward me, my hands open to reveal the precious M&Ms.

So - we needed to work on this game a little. Over time Matt figured out that even if he didn't make it home, we would still be near the bench with M&Ms in hand awaiting his arrival. His smile upon seeing his M&Ms was precious, so triumphant, regardless of the score.

M&Ms. Who would have thought that a simple bribe of candy could become a communication tool? We started using M&Ms as bribes for several teaching moments - because they worked! Don't worry, his teeth were fine, not a cavity until his 22nd year.

There's more to the story - after all, there's more to T-ball than just hitting the ball and running the bases (we should know!). There's the outfield. Could he catch? Could he chase a ball? Yes and yes, . . . well, kind of. He would go get the ball and throw it (not much power, but dead-on trajectory). Alas, his poor team mates could never figure out where or to whom he was throwing the ball because, after all, he looked sideways, out the corners of his eyes. Then again, no one else was a superstar either - it's one of the joys of T-ball. Ah yes, the comic relief of T-ball.

The children of T-ball were all young and just learning the game. A fly ball with a great chance of success to be caught could just as easily be dropped or left to fall where it may if a plane flew overhead. Every child in the outfield would jerk their head skyward to watch a gleaming plane write white-cloud lines against the blue of the sky. Even runners would stop and watch. A child in the outfield could just as easily not notice a ball because a beautiful butterfly just happened to be near, the fluttering of its wings much more exciting than a baseball rolling in the grass. So Matt's behaviors were taken in stride, he just didn't seem all that different when viewed in the light of T-ball.

The team went on to become champions and each child received a shiny gold plastic trophy to commemorate the season. For Matt, it was a badge of honor - he had played T-ball. For us, it meant something too - MATT HAD PLAYED T-BALL! He beat the odds. He chose to actually be around others - at a distant - but still close and still his decision. The second season brought another wonderful round of butterflies in the outfield and planes overhead and another great score card. A writer from the local newspaper came to watch the game, watch Matt play, and interview me (he later won a writing award for his story on Matt). As I told him, and am telling you now, always leave room for hope. Never give-up on your child. Don't listen to those that claim "he can't" and listen instead to your heart.

Remember, everything can be learned, everything. Sometimes you just need M&Ms.