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.

Ah yes, Gravity Works . . .

The law of gravity - what goes up, must come down. You would think that once this has been experienced a few times it would not need repeated testing. But then, you are probably not autistic.

Matt experimented with gravity quite a bit. Small items (matchbox cars and other small toys) seem to be airborne around our home several times each day when Matt was between the ages of 4-6. Don't get the wrong impression here, Matt didn't throw toys. Matt experimented with toys. Gravity seemed to be utterly fascinating to him. He built ramps or used what was available, to get up the speed for lift-off and then as fast as he could, position himself at just the right angle for viewing the flight and the inevitable crash to the ground.

He couldn't watch the flight looking straight-on. His head would turn slightly, his eyes looking off to the side with a bit of squint to them. The better the ramp, the longer the flight and the more he liked it. Everything seemed to fall in a predicted line, and Matt loved lines. These lines could not be seen readily. Oh no. You have to position yourself just right, squint just enough, to see the trajectory. What was a quick blur of toys flying off the deck to us, was an arc of colored line to him. The faster the take-off speed, the larger the arc.

No toys available? That's O.K., everything that can go up, can fall down. Even the newly cut grass was a physics experiment. Holding a clump of grass clippings high above his head, his head turned as far away as he could muster so that his eyes had to gaze from the corners, he would release the blades a few at a time and watch them fall. Grass clippings became a favorite. Grass was unique - it was light enough to be carried by the wind. It didn't fall straight down. A wisp of summer breeze and the blades seemed to float and drift in a pattern so unlike his toys that it soon became a new mystery to be solved. Strong wind - grass drifts almost parallel to the ground. No breeze - grass fell faster and almost straight to the ground. Every time we went outside, Matt had to test the unique properties of grass.

Going for a walk to the creek? Great place to test the trajectory of rocks! Throwing rocks in the water became a wonderful way to get him to want to go outside, go for a walk, get some fresh air. All the kids loved throwing rocks in the water. The other children would try to skip the stones, and of course, to see who could have the most skips. Matt didn't like picking up the rocks at first - after all, they were on the dirty, dirty, ground. So each child would find rocks for Matt to throw and we would all cheer when he threw the rocks. He loved the big rocks that made a "plunk" sound over the little rocks that made a "pink" sound. Even with rocks, he would turn his head away, look out the corners of his eye, and squint.

Did Matt ever test gravity on himself? Well, yes and no. Matt did do quite a bit of jumping off chairs, beds, counter-tops, and usually someone was there to catch him in midair. Usually. There were times when he landed and landed hard. No - he never did get hurt, at least, not that we could tell, but his pain threshold and how he dealt with pain are a whole different subject (a future blog).

As Matt grew older, and we played various family sports, we began to marvel at his accuracy with a ball. Matt still turned his head away, still looked out the corners of his eyes and squinted, but his trajectory was dead-on. Throwing a ball straight to the target, making a basket without looking (or so it appeared) were all related to his early experiments with physics. This ability flowed over to other astounding gifts - like his ability to pour a glass of milk at a speed that would make most on-lookers cringe, awaiting the inevitable overflow. Milk never spilled - not a drop. The glass would be perfectly full - right to the rim. Anyone watching would stare in awe.

So why the blog about gravity, trajectory, physics, and milk? Very simply, I wanted to show you some connections between what parents may see as quirky behaviors, and the true learning that takes place. What may seem unusual, strange, and abnormal (and I really hate that word) to us, is in actuality the learning by experience route of those brain cells I keep telling you about. The normal route was damaged, a new route is found. It may take a longer, winding path, but it finds a way. Matt learned about gravity, wind, sounds from water displacement, trajectory of an object in flight, and made emotional bounds to others (everyone wanted to watch his flight patterns, or find him rocks). What may seem trivial to the untrained observer, is actually the remarkable ability of the brain to re-learn through observation, experience, and experimentation. This is the beginning of critical thinking skills - a remarkable asset of the human mind.

So, don't write off those little quirks of behavior as nonsense. You may be witnessing something much more precious.

GPS? No thanks, I Have Matt

GPS (global positioning system), for all those with a crappy sense of direction, is now common in vehicles and phones.  I don't need GPS - I have Matt.

We noticed this ability when he was quite young.  We took a trip to see relatives near Chicago, driving from our house in the mountains of Virginia.  Matt was not speaking yet on this first trip.  He rode quietly in the back seat, staring out the window.  Our other 3 children talked and laughed and when the sun went down, promptly conked out.  Not Matt.  He would fight sleep - just had to see where we were going.  We drove most of the way at night because, well, we had 4 kids.  The trip home was similar, when the sun went down eyes closed - except for Matt.

We didn't take trips up north very often.  It cost money, and we live from paycheck to paycheck.  So the next time we went up north was years later.  Matt was speaking in simple sentences by then.  I don't know about the quirks of other autistic children, but Matt liked to talk to himself in a low voice.  I think it helps him to focus on what he is doing.  There are times when I talk to myself out-load, and usually it is when I am trying to stay focused on something I am doing, or working through a problem I am having.  Have you ever talked to yourself out-load?

Anyway, Matt spoke softly to himself while we drove the route from our house to my mothers, 900 miles away, and I didn't catch what he was saying until the other children fell asleep.  That's when I heard what he was actually saying - he was giving the step-by-step, turn-by-turn directions for driving our route.  He had actually memorized the way to grandma's house!

This was very enlightening in several ways.
First - wow! What a memory.  He was accurate about every highway, off-ramp, major road sign - even where we stopped for gas and bathroom breaks!  He knew major Interstates and every city street to take to reach our destination.

Second - (a "lightbulb" moment), he had been memorizing all this years before, when he was unable to communicate verbally.  Of course, it makes so much sense now - roads form long, unbroken lines, connecting one major area to another, just like telephone lines, just like railroad tracks. His interest must have been intense as he never slept while the car was moving.

Third - this was one of those moments that changed how I taught him..  He was learning by watching and listening, in addition to all the practice, practice, practice.  Just being around the exchange of knowledge (in a classroom), or within earshot of a conversation, was providing him with the information he needed to make some great neural connections. I started using this knowledge to teach Matt new things.

He still has this wonderful gift.  When we go on a vacation to a destination he has never before experienced, he stares out the window, taking it all in.  He draws some of the signs, and sometimes a few landmarks (like statues or monuments). Rest assured, when we travel back to that same vacation spot, he mutters to himself under his breath, and remembers every turn.  If I ask him, "where do we turn next?", he sits up straighter, gets his bearings (this takes only seconds) and gives me the route to take.  My sense of direction is pretty good, so I don't need to ask him very often, but I do to get him to start a conversation with me.  Matt is always eager to provide technical assistance for any journey, whether a long trip or short.

GPS?  Why would I ever need GPS when I can have something much better - a conversation with my son.

Changing connections

The brain is amazing in its complexity. Young children, around the age of 3, have a pretty large brain when you compare it to their body size.  Actually, their brain is about 90% that of an adult, yet their body size is only around 15% that of an adult. The cells (neurons) seem to be connecting at lightning speed.  Think about it for a moment - speech, facial recognition, walking, running, eating with utensils, singing, playing, laughing, learning defiance, and pushing parents to their limits, all happens during this young age.  We may call it the terrible twos, but it lasts much longer than the second year of life (as any parent can testify).

During this remarkable time, the brain is organizing and developing.  It is making connections at a very fast pace.  Lets say, a young child experiences a brain injury during this crucial time of brain development - injury here referring to the onset of autism. Sensations from the senses are not interpreted the same; odors smell different, bright lights seem to hurt, sensations on the skin are amplified, loud sounds feel painful. Disruption in the wiring results in a kind of sensation overload.  The brain, in its complexity, sees this change as a threat and sends out the signals for the body to beware - this is anxiety.  Think of anxiety as the brains way to alert  you to danger, part of the flight or fight response. But, unfortunately, the wiring is faulty and it tries to throw out the correct response to all these changes through the best route it can. Alas, it doesn't quite get it right, and we see this response as the symptoms of autism; hand-flapping, rocking back and forth, averting the eyes, spinning, sometimes even  head-banging.  Now you know why it is so important to get an early diagnosis. Parents, teachers, paraprofessionals, all must work together to try to re-route these connections back to where they should be, and it has to start while the brain is still capable of forming these connections.

Lets narrow it down to hand-flapping.  Matt started hand-flapping between the ages of 2-3.  Was he excited? Upset? Why did he do it when he wanted something, like a toy or candy?  More impotantly, how do I make him stop?

We started with simply holding hands, just a short hold, nothing too intense, no telling him to stop, no aggression or threats.  He had to feel safe.  Remember, find out what he wants, give him what he needs.  He wanted to communicate. He needed to feel safe about asking.  Asking was not a verbal option. Asking came in the form of gesture and facial expressions.  He needed to feel it was O.K. to ask, but his anxiety over how to ask, or even his expectation of the response (whether excited or apprehensive), lead to hand-flapping.

There were days when we held his hands a lot, and days where we gave him the outlet to just flap away.  As he got older and felt more comfortable in his surroundings, and could use other forms of communication, the hand-flapping slowly disappeared.  He had made new connections in the emotional center of his brain that tied into the ability to communicate.  I like to think that the anxiety of dealing with a foreign environment was replaced with the security of familiarity.

Familiarity is extremely important to the autistic child.  Sameness.  Everything must line-up in this direction or that.  Being the first in line - always.  The same routine for each day.  Eating the same foods.  Watching the same shows (over and over and over). Familiarity and knowing what to expect relieved anxiety.  Relieving anxiety lessened the behaviors so common to children with autism.  It sounds so easy . . . .

Ask any parent of an autistic child and they will tell you the pitfalls. Have you ever watched the movie, "Harry and the Hendersons"?  Well, our entire family has seen it or heard at least 200 times.  Ever watch an episode of "Thomas the Tank Engine"?  Again, we know them all by heart.  Not only did we have to buy every single video in the series, but we had to read the box-cover to make sure we had all the videos (they listed every episode on each tape).  Why would we put ourselves through such auditory stress?  Because Matt NEEDED it. It brought comfort and pleasure to him.  He memorized all the lines.  Was it useful?  Yes!  His movies  depicted human interactions, showed emotional connections and facial expressions, provided repeated examples of proper speech.  The animated videos taught imaginary play, depicted good behavior and bad behavior, and of course, Matt's favorite, comic relief.

So, if you know a family with an autistic child, and you see them performing the same rituals each day and showing the same video (DVD) over and over, tell them what a wonderful sacrifice they are making.  They are providing familiarity, and thus comfort, to their child.  Comfort relieves anxiety.  Less anxiety allows the possibilities for new connections to form along the right routes within their child's developing brain.

Oh, and not all routines are stressful. Getting him dressed each morning and in pajamas at night, brushing his teeth, making sure he saw me smile (a lot!), all brought about changes in his behavior and provided new learning experiences.  My favorite?  Remember me telling you about how I would place my hand softly on his cheek and  he would brush it away?  Well, I never gave up on that one.  I would place my hand softly on his cheek and speak soothingly in his ear, and smile (always the smiles), and eventually one day he leaned into my hand.  Months later he would put his hand over mine and press it tighter.  And finally, after what seemed like an eternity, he began to come to me when he was upset or hurt and would grab hold of my hand and place it upon his cheek himself. 

I can't express what that meant to me.  I had finally broken through the barrier of autism and was really, really touching MY SON. Out of all the people in the world, this little boy trusted ME to be the one to give him comfort.   

That one little change in behavior gave me all the hope and the strength I would ever need to continue the battle against autism. 

Speech - A Battle Against Time

Recall Matt's first word? It was "kitty" and was uttered before the thief came in the night and stole my son's future. After the symptoms of autism set in, Matt never uttered another word - not for years. After his diagnosis, I set him up to receive speech therapy. This entailed a meeting with school officials as Matt was also to receive home-bound preschool services. At that meeting, the speech therapist informed me that he would see Matt in his office once a week.

Let's back up a minute . . .

Learning to speak has an expiration date. Time is limited. The section of the brain that gets wired for speech is fairly active - until around age 5, after which the connections for the ability to speak slows down, becoming non-existent. In other words, if he didn't learn to speak by age 5, then chances were pretty good that he would never speak. Matt was 3 years old. We had 2 years to get him to speak, TWO YEARS! To me, 2 years was right around the corner. Once a week speech therapy would not cut it - simple as that.

Let me also remind you that when Matt was diagnosed, there was still that 1:10,000 chance of autism in the population and teachers, professionals, friends, and relatives had never heard of the disorder. Matt was entering a school system that had never dealt with an autistic child. Matt was the ground-breaker, I was the force, and every child to come after would be judged by what we accomplished. I was fighting for Matt, yes, but I was also fighting for any child that would come after. Guess what? I Am a fighter.

Getting back to the story...

I politely told Mr. Speech Therapist that once a week was not enough - he needed it daily (always start with more than you will accept). He countered two - I pushed for 3. By this time voices were being raised and one of those voices was mine. You see, I could speak, and I wanted Matt to speak. And . . .he actually said, and I have to paraphrase here, that Matt didn't need speech that often because he didn't speak. Let that sink in a minute...

That got me to my feet, and slamming my hands down on the table (forcing all the other members of the committee to flinch and jump back in their seats) explained to this man the science of speech, and that his role here was to help my son achieve speech before the expiration date.

Matt received speech therapy 3 times a week.

Sorry, but the story doesn't end there. Trying to get Matt to speak was an everyday, every waking hour task. Remember, use what he likes to give him what he needs. One of my son's favorite things was water - yep, water. Water in containers, water running in streams and rivers, water from the hose, water in the tub. We must have said the word water to him thousands of times. At Matt's first speech session, the therapist (still a bit chilly from our last encounter) spent the time trying to get Matt to sit in a chair. Matt didn't sit in chairs, he sat behind them, or used them to stand on, but sit? Yea, right, let's spend our energy on behavior with the clock ticking on communication.

The therapist spent so much focus on the "getting seated" agenda that he missed Matt's first word, "wa", as he pointed to a picture on the wall with cows and a stream. He stood on the chair, tapped his finger on the stream and very clearly said "wa". I was in awe.

The therapist tuned me out when I explained what had just occurred. I went home, called the school board and fired my therapist, and requested a new one (best move EVER!). The next week, we met Debbie, his new speech therapist.

I was ready to fight again when we approached the school where Debbie worked. I found her office and she came to the door to greet us (us...). Here was a woman, wearing a dress with a flowing skirt, heeled shoes - very professional looking, and what she did next bound her to my heart forever. She kicked off her shoes and sat on the floor, getting down to Matt's level. She began giving him various toys and speaking softly only to him. How cool is that?!! I sat quietly in a chair just inside the door and watched this interaction for 20 minutes. She looked at him, trying to gain eye contact, she asked him questions and provided answers (demonstrating how to reply) and after months of visits, had gained his trust.  Matt began to speak - simple words, but words all the same. Matt was four years old.

Matt continued to see Debbie for the rest of his school years, and their bond was so tight, that when he was asked to nominate his favorite teacher for Who's Who (Honor Students get to do that), he chose Debbie. Speech Therapist do not usually get such recognition, and her genuine surprise and joy was captured for all to see in the town newspaper.

During this period, my first husband and I divorced - not unusual if you look at the statistics for divorce among couples with a disabled child. One night just days before Christmas (and 3 weeks before Matt's 5th birthday), I was sitting in the living room, tears on my face as I thought about my circumstances (a poor, poor, pitiful me day, as I like to call them), when Matt crawled into my lap, put his tiny hand on my cheek and said "mama" for the first time.

Ah, yes . . . it's the simple things that bring us joy . . .

Man of the House

My husband travels quite a lot with his job and is away from home for 13 weeks each time. All the children are grown now and on their own - except for Matt. Matt will be soon enough, a few years maybe? He'll have to live close by (more for my sake than for his), but in the meantime he gets to be Man Of The House.

The duties for this position entail a multitude of responsibilities - helping mom shovel all the snow we are getting this winter, taking care of pets (2 dogs, 3 cats), keeping the home clean and in working order, cooking for himself when I am at work, answering the phone (and taking messages), and helping to buy and carry -in groceries. Each of these responsibilities took a while to achieve and now they are celebrated every day.

Hard labor is not Matt's thing. Shoveling, raking, digging, carrying heavy items, all fall under his " hmmm" list. When he doesn't like something he simply says "hmmm", yet he gets right to it - no argument, ever. As a man, he is almost 6' and strong as an ox. When the work is complete, he smiles and awaits to be officially released from duty.

Grocery shopping has become a specialty task for him. He pushes the cart, picking out the items on a list that he made. He's a man-with-a mission and confident in his own ability to succeed. His head is up and proud. When I speak to him he looks me in the eyes and response appropriately. When it comes time to pay, he grabs out his wallet and waits to see if I am buying or he is - but he's always prepared. He makes sure all the bags and items are carefully stowed away in the jeep and pushes the empty cart to the cart-return. Upon arriving home, he carries it in, always grabbing the heaviest items first so I won't have too, and then he puts all his items away. I know this sounds so easy, but remember this is an autistic individual. He had to learn all these "easy" tasks and that took time and patience.

When I am working in the evenings, Matt cooks for himself. His list of food items that he will eat is still a small list (I could count them on both hands), but he can make all of them. I leave him a list each day of what to have for lunch, what to have for dinner, chores that need to be attended to, and phone calls to make. He goes down the list and completes each task, knowing that he is free to play guitar hero, watch TV, and draw (and draw and draw) when the tasks are out of the way. He is still learning everyday (aren't we all?).

He is talking on the phone! He calls his daddy or me, sometimes a brother or sister, and can carry on a conversation for over 5 minutes (yep - 5 minutes!) before running out of things to say. His siblings are learning too. They can keep him talking for close to 10 minutes on a good day! Practice on the phone is important to his own safety. He made need to call in case of an emergency and the experience for him is therefore priceless.

I find it amazing that Matt handles alone time so well. He loves his days of "freedom" - when I am at work and the house is His. He will someday have a home of his own (I know he will because this is a goal and we always push to reach our goals). From now until then, we practice, practice practice. Teaching an autistic child requires practice to be ongoing. Somethings need less practice - others need lots and lots of practice, but everything can be learned - everything.

Trains and the 3 Vs

Matt didn't like me to sing him to sleep. He would put his hand over my mouth (the ultimate singing critique?). What did he like? He liked trains. He always wanted me to draw him a train. He liked stories about trains, maps with train-tracks on them, the letter "T" - because after all, T stood for train. Trains, trains, trains - what would I have done without his love of trains?

Think about it for a moment. Trains line up in long lines. They have wheels that spin. They are beautifully crafted, and you can ride on them. They have various cars they can pull but there is always an engine and a caboose. The tracks seem to go on forever - an unbroken line. Hmm . . an un-broken line. Connections. Constant. Let me tell a few stories with these influences . . .

Learning to Draw -
Trains - what else? Matt would bring paper and pencil to me and push for me to draw a train. Now let's clear up my drawing ability early. Yes, I can draw. I'm an artist, but my skill is not one where I can just picture it in my head and it looks great. Far from it. I need to look at something to draw it with any accuracy, so my piddly little drawings of trains were rudimentary at best. One day, I put the pencil in his hand and clasped his hand in mine. Then slowly, we traced a train from one of his many train books. It took! He began to draw, and draw, and draw. Matt is now 24 years old and an artist. He draws free hand from both models and memory. No erasure marks - ever (if he has to erase, he throws it away!). The renderings are simply breath-taking at times. He chooses animation over real-life and that's O.K. His animations make my real-life drawings seem so plain.

Lesson learned - give him the tools he needs to do what he needs.

Learning the Alphabet -
The letter "T", of course, began his ability to understand and write the written word. Every morning, waiting for the school bus, we would draw on the frost-covered glass of the back door. I would write the alphabet and stop at the letter "S" and he would write the "T" and we continued. Day after day, year after year, it grew into his writing of the alphabet, then words - like his name, then his address, his phone number, and on and on. There were other times too, in school and at home, where we practiced, but the backdoor was his starting point.

Lesson learned - give him what he needs where he needs it (writing in frost was fun!).

Learning to Read -
Reading about . . you guessed it, trains! Type of trains, names of trains and train stations, names of all of Thomas the Tank Engine's friends. If it concerned trains, then he wanted to know. Wanting to know meant learning to read, and before long he branched out into other areas and new interests arose, but it all began with trains.

Lesson learned - If he likes it, use it.

Learning to Connect -
This one is directed at me.I needed to connect the dots. Patterns exist everywhere, and yes, even in the autistic mind that seems at times chaotic. Laughter, which would burst from him for no apparent reason, upward gazes that lasted minutes, crying and sadness out of what felt like nowhere. I had to learn to connect the dots.

Laughter, which I have seen listed as "inappropriate" under signs and symptoms of autism was not inappropriate after all. Observation and reasoning lead me to the understanding that he was actually replaying an event or TV show that was comical and laughing at it as he thought about it. Have you ever done that? Thought about something funny and giggled? Maybe smiled?

His "inappropriate crying" turned out to be the same way - he was thinking of something that had upset him earlier and was re-living it. Surely, you have done that! Thought about a loved one or pet and the sadness just came in and overwhelmed you. An autistic individual has trouble saying what they think, can't express the right words. It's hard for us mere mortals to understand what they feel - but they feel everything. It's just under the surface, hidden from view, but it is there.

And what about the 3 Vs? This story was one of those ah-ha! moments we get sometimes. Matt was in his early years of drawing. He spoke in simple sentences, and while driving would utter, "3 Vs". He would draw three V shapes, side - by - side, and would connect them with long lines to another set of 3 V-shapes. During a drive one day he uttered his famous "3 Vs!" and gazed upward. I leaned back and gazed with him and after a few moments realized what the 3 Vs were. He was looking at the telephone lines, the large ones that traverse mountain sides. These large electric lines carried 3 separate lines and connected to the poles via a V-shaped terminal - the 3 Vs. Yes, of course! Lines that seem to go on forever, connecting, communicating. Why had I not seen this sooner? It all made sense. After that revelation we made sure to drive past the mountain-traversing telephone lines as often as possible - after all, it is the simple things that bring us joy.

Reasoning and Deduction

How does someone with an inquisitive, scientific mind confront the question of "what has happened?" in dealing with autism? To be perfectly rational (think Dr. Brennan on "BONES") requires observation and lots of it. Matt seemed to have lost what he had known prior to the thief. He had spoken, he had eye-contact, he laughed and found joy. Now he had no words, no eye-contact, laughed at random times, hid away from others, lined up toys, shook his hands, and the list goes on and on.

I believe Matt's brain was injured - yes injured. Something, possibly a chemical (neurotransmitter) required in brain-cell (neurons) communication (synapses) was no longer produced or was produced incorrectly. The connections became weak and fell apart. New connections had to be formed, but possibly not in the normal sequence. In otherwords, his brain needed to relearn things from before, but the way in which he had learned prior to the damage was no longer an available option.

Learning had to take place differently. What does that mean to parents, family and friends (and professionals, too)? It means that WE must re-learn how WE communicate. An autistic child does not have the option to choose how to communicate, they use what they can. We are the ones with options, and therefore, we are the ones that need to learn how to communicate differently. Trying to force our learning methods on them is like trying to teach your pet French - good-luck with that.

I had to enter his world, see how things looked from his point of view. Was the grass itchy? After all, he had to ride on my shoulders when hiking through tall grass. Was the smell nasty? Most foods were not even tried - and don't try to sneak something new onto his plate! Was the darkness scary? Late at night he would venture into my room- with pillow and blanket, to camp on my bedroom floor. I would find him next to my bed each morning. Did he like chaos in his room or the smoothness of his shelves? I would put his toys away on his shelves and he would take one arm and swipe them all back off and onto the floor.

With each seemingly defiant move I would have to ask myself "why does he need it this way?". Every step forward was another new step to hurdle. It all came down to this simple quality - Matt saw the world in a completely different light. I remember him holding up a ball and turning it this way and that, looking at it from the corners of his eyes, sometimes with one eye closed, from every angle imaginable. I remember thinking to myself, "this child is going to be an artist". He saw textures, shade, shape, and gesture, whereas I simply saw a ball.

Step one in the re-teaching of Matt: Learn how he learns, see what he sees, figure out why he needs what he needs.

The Changeling

A new child had been dropped into my home - one that could not speak, could not look at my eyes. A child that seemed troubled, rocking back and forth, shaking his hands, hiding behind the furniture, avoiding interaction as much as possible. Who was this child? Where was Matt? He was only 15 months old and something had begun to go terribly wrong.

As a parent I wanted with all my heart for him to be alright. As a scientist, I wanted to know what happened inside his mind. My instincts led me to crawling behind furniture, sitting quietly with my son in the dim light. I took in the feel of the place he sought as a sanctuary. I could see the difference in the light. I could hear the sounds of the house muffled. The air even felt still. He would glance toward my body (not my face) and then quickly look away. I placed my hand on his cheek and he would squirm away an inch or two. I would talk softly to him and knew he heard me (no real signs of hearing - I just knew). Matt was in there somewhere and I wanted to reach him, let him know I was still here for him.

I mentioned this to his pediatrician at his visits and after Matt turned 2 (and strange symptoms became common) he advised me to have Matt tested (never exactly told me for what). My own curiosity lead me to autism (with no Internet!!). Autism was a 1: 10,000 chance back then and diagnosis required Matt to undergo a week-long examination at the Kluge Center for Children in Charlottesville, Virginia.

I have several stories here - things that happened while I was there with Matt. One was the fact that Matt (now 2.5 years old) was walking up stairs using the same foot to lead off each time instead of alternating feet. After this was brought to my attention, I started taking Matt for a walk each afternoon to practice stairs. By the end of the week, this was no longer a problem. Another was his love of hotwheels (cars). He would examine them upside - down, spin the wheels and then line them up in a long row. It never occurred to me that this was unusual. I had assumed he was playing - you know, just playing. Examining wheels and lining them up didn't seem that far fetched for a 2 year old. Another was his love of mirrors. He would stand before a mirror and practice various emotions - a sad face, a happy face, a grimace - one of those things you brush off as normal behavior until someone in-the-know tells you differently.

At the end of the week, the therapists and doctors had a meeting and after the meeting, the doc-in-charge took my husband and me to a quiet place and gave us the diagnosis - autism. I had suspected autism (had done my research in advance) so the news wasn't all that heart-stopping. What was heart-stopping was his recommendation to put him in an institution . . . really! No. My reply, short and to the point. He went on to tell me that I didn't know what I was in for, didn't have the skills, yadda, yadda. No - God gave Matt to ME! He trusted ME! I was chosen for this child and there was a reason (no - I have no clue as to reasons), but I had promised I would handle anything as long as Matt could live, and I would not back away from a promise (or a challenge - ask anyone . . .).

So, Matt came home and the world changed. My life became focused on teaching; myself, family, friends, others and of course, Matt.

Life before autism

Let's face it, autism isn't something that a child shows signs of at birth. It sneaks in and robs a child of their future potential like a thief in the night. Matt was happy. He laughed, he chased the cat, he made eye-contact. He was a healthy, happy little munchkin, and I had no clue how our lives would change in the coming months.

He was born during a blizzard, a month premature, by emergency C-section. The ultrasound showed distress, and upon opening me up the doctor discovered the umbilical cord wrapped around his neck, choking him. The quickness of the surgery saved him from the claws of infant death. I had been a very nervous expectant mom because I had lost a child the year before - another boy, premature, also delivered by emergency C-section. I clearly remember telling God I would handle anything if this little boy was allowed to live. Did I set myself up for a test or what?

Matt came home to all the fanfare that newborn babies are greeted with - proud daddy, proud brother, curious pets. His first year pretty uneventful as far as signs or symptoms are concerned. Somewhere after the first year he said "kitty" as he would gleefully chase our cat.

Then, the thief crept in. Small signs at first - avoiding my gaze, "kitty" was never chased again, even the word stopped being uttered. I would find him hiding behind furniture, rocking back and forth. What happened?

Could it have been vaccines? It occurred close to that interval, but the jury is still out on a relationship between vaccines and autism. As a mother, show me an autistic child who has never been vaccinated and I will stop wondering. As a scientist, let's keep looking at all possibilities. For now, I want to avoid that argument because this is his story and his successes and blame has no place here.

My son stopped communicating verbally and began communicating with gesture. If you have an autistic child, then you know what I mean. My "test" had begun.

Starting on a Good Note

O.K., let's get the basics out of the way . . .

Who am I? Well, I am a scientist, an educator and the mother of an autistic child. As a scientist I observe phenomena, form hypotheses, test, and using what I learn either continue in the same direction or throw out the hypothesis and start again. As an educator I teach others what I know and facilitate their learning of complex issues. As the mother of an autistic son, my most important job in this life is to make his better.

So, let's start the conversation on a high note. I have watched all my children graduate - from high school and colleges - and for each I was the proud mama. I want you to know right now that I witnessed Matt walk across that stage, shake hands with the principal and receive his diploma. He graduated number 4 in his class. Yep, let me say that again (because it feels really good), Matt graduated number 4 in his class! He has had a college course and will likely have more.

It was a long, hard road to that simple, single event. It didn't happen overnight, and yet now it feels that way. I didn't do it alone, and Matt didn't do it alone - so many to thank over the years.

This is the reason for this blog. I have always thought about writing a book for parents, but it seems I never find the time to just sit down and write. The idea of dredging up old memories (some painful) has been a deterrent also, but I have always wanted others to know it can be done. I have witnessed real progress in all areas of social ability and communication in my son that most people thought were impossible.

The blogs I write may not be in order - they will most likely be as memories come. I hope it doesn't get too confusing. Bear with me as I reveal the world according to Matt.