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Story of the Day

Stories from the early years, the school years and his adult life as they occur.

Sunday, February 28, 2010

Oh, the joys of potty training . . .

I didn’t think we would ever get out of the diaper stage. How do you potty train an autistic child? First, they have to learn control and second, they have to learn to clean themselves. It’s nasty business for adults, think of how nasty it must be for someone with an acute sense of smell and touch. Matt was in diapers for years. We tried everything to get him to control his bladder. Nothing seemed to work. He was 5 years old and diapers didn’t fit well anymore. Training pants were always wet. Even the pre-school was tired of changing him. Our nerves were shot. We just didn’t know how to proceed.

One summer afternoon I was out on the deck watching Matt in the kiddy pool. He even had to wear protection in the pool because of lack of control. His disposable training pants were saturated from pool water and it was time for him to get out. It practically fell off as he stood up. I grabbed the dissolving clump before it could hit the deck. Nude and loving it, Matt ran around the deck in the hot sun. Tom had just come out the door and we were laughing at Matt’s obvious joy of being naked. Christopher came out to see what all the laughter was about.

I’m not sure who had the idea first - was it Christopher or Tom? Anyway, the next thing I know both were standing off the edge of the deck and peeing into the yard. Matt was fascinated. Remember that love of lines and arcs made by water? Well, he was hooked almost immediately. He ran to the edge and stuck his belly out as far as it could go, pushing his back with his hands, and began to pee. Here I was, in awe of their glee and a bit taken back. I would have been mad if it weren’t for the fact that it worked – and they seemed to be having so much fun!

Everyday after, Matt would stop what he was doing and run outside to pee. Clothes were easy to remove, and the training pants were finally becoming useful. Matt loved the pool and spent most days naked as J-bird, splashing around and jumping out to pee off the deck. We lived in the country, no one around to see, and I couldn’t see any harm in it. When we had Jacob and Sarah for the weekends, Jacob would join in and Sarah and I would retreat to the house. Sarah was very jealous, and to tell the truth, so was I.

It was this particular summer that our cat had kittens. They had a nice little shed just off the deck where they stayed with the momma cat. At 6-weeks of age we put an ad in the paper and started receiving inquiries. A woman and her two children came to see the kittens. They were petting each one, trying to decide which kitten to take, when out came Matt - stark naked - and jumped in the pool. I called for Tom and before he could get out the door, Matt had decided he needed to pee. He slipped past Tom, ran to the edge and let it fly. The woman mumbled something like, “We need to think about it” as she quickly hustled her children toward the driveway to escape. I found this to be extremely funny and started laughing. Tom laughed and Matt, hearing the joyous sound laughed too. His behavior had just been reinforced. He was controlling his bladder in the privacy of our yard. What harm could it do?

Then some time in the middle of summer we decided to go to the local flea market. We gathered up the kids and Matt’s changing bag and headed out. Each child was looking at items on nearby tables, staying close enough so we could keep track. Matt stayed right with us. Tom and I were discussing an item we had found when I heard the sound. Matt had dropped his pants and was peeing right there, in the middle of a crowd! What could we do? He was in full stream. We looked at each other for only a moment. I moved to block the view, standing on one side, and Tom calmly moved to stand on the opposite side. Christopher and Jacob walked over and began to giggle, but taking a cue from us, moved to block the view. Sarah wandered over and seeing what was happening, just smiled and joined the ring. We managed to block any and all view of Matt or the stream. The entire crew worked like a well-oiled machine, and without words, came together to protect Matt. No one in the crowd seemed to notice. We decided to leave before anyone could say anything to counteract that assessment.

It took all summer to get Matt to pee in the toilet. It took all summer to make him stop peeing off the deck (and he never again let loose in public). But we did it, and Matt was on his way to self control.

Bowel movements were something quite different. First, Matt couldn’t figure out why a part of his body kept coming out. What was that nasty stuff? Sitting him on the toilet and waiting and waiting and then taking him off the toilet and cleaning him up seemed to take an hour each time. Matt would watch the water swirl with each flush. Where did that nasty stuff go?

He evidently needed to explore this phenomenon. One day I found him in the bathroom, stuffing plastic links into the toilet. Plastic links are those brightly colored blocks of various shapes that link together to form long lines. Matt was trying to find out just how deep the hole in the toilet bowl went. He would shove the entire linked chain as hard as he could, then add a new link. We tried to remove them, but each pull resulted in a simple disconnect of a link. The blocks that were in the hole were wedged in tight. Tom finally had to take a blow torch to the toilet to melt them free.

Of course, this was followed by clogging the toilet with toilet paper – an entire roll. Matt was learning to clean himself, but instead of using just enough, he became fascinated with the dissolving properties of the paper and just couldn’t stop. Another plumbing nightmare (and more would come). We became experts at plunging.

Ah yes, potty training. We were both experienced parents when it came to potty training a child. But we were amateurs when it came to potty training an autistic child. We needed creativity, a great deal more patience and a sense of humor to pull through. The best part -if there can be such a thing?

It’s finally over.

Saturday, February 27, 2010

Daddy come home

This past Christmas was a difficult one. Tom had been laid off earlier in the year and the only job he could find required him to travel to other states for 13 week contracts. All the kids are grown and in homes of their own and Matt and I were holding down the fort at our home. Money was tight – so tight that we could not afford a trip to Arizona to see Tom and Tom could not come home for the holidays.

Certain routines still had to remain in place. We always took Matt shopping in the big city of Christiansburg where he would pick out a gift for each individual and purchase it with his own money. He would then wrap them and place them under the tree. Matt also bought his own Christmas gifts which he would wrap and place beneath the tree. Come Christmas morning he would excitedly open his own gifts as if he had no idea what was in them. He loves playing Santa to himself.

This year just didn’t feel like Christmas. I just couldn’t put up a tree knowing Tom was in Arizona alone. I told Matt we would have our real Christmas when Tom’s contract ended and he could be with us. Matt agreed – it just wasn’t Christmas without his daddy.

It was just the two of us going to Christiansburg to shop, but we included Tom by cell phone. We made our usual stops at each store Matt had listed. He took great care in picking out each gift and I helped carry. Matt excitedly relayed each purchase to his daddy via cell phone as we went to each store. After the last purchase and last call to Tom, we got into the jeep and started home. The traffic was terrible. It seemed everyone else had picked that particular day to shop also. While stopped at a red light I heard muffled sobs. I looked over at Matt and was surprised and saddened to see him crying. His hands covered his face as if to catch his heart-wrenching sobs. He didn’t want me to know he was crying. What could I do? We were in the middle of traffic and the light had just turned green.

“What’s wrong, Matt?” I asked. “I miss my daddy!” The words tore from him and made him cry harder. He was crying uncontrollably now, loud anguished cries from somewhere deep in his soul. Matt was almost 24 years old. He was a grown man, he very rarely cried – heck, he was rarely ever sad! “Daddy misses you too”, I said, knowing what a lame response I was giving him, but I was at a loss as to how to comfort him as I negotiated lane changes and traffic lights. “Do you want to talk to him?” I said handing him the cell phone.

Matt immediately dialed Tom. “Daddy?” he said in a child-like voice, then blurted “Please daddy, no more contracts!” I can only assume that Tom’s heart had to have been squeezed unbearably, I know mine was. He continued to cry and reveal his pain to Tom for what seemed like forever, when actually, only a few minutes had gone by. Slowly, Matt’s sobs lessened; he dried his face, and said good-bye.

We talked on the way home about Tom’s contracts out of state and its importance to keeping our Virginia home. We talked about sacrifice and determination and we talked about responsibility. Matt knew he was the man of the house and that daddy had trusted him to help me take care of our home. By the time we arrived home, the atmosphere had changed completely. Matt was again demonstrating pride, determination and a smile.

He wrapped the gifts. We talked some more and he again called Tom. His voice was light and happy and he smiled with each sound bite from Tom.

There’s a special bond between Matt and Tom. They both are very comfortable with each other. Earlier in the year Matt had traveled with Tom for a contract in Alabama and Matt loved the adventure of it all. Basically, it was a man thing. Matt wanted to be with another male, away from the rules of a female. They had a bachelor pad and went sight-seeing. They didn’t clean – they did Man things. Tom learned more about Matt when I was not there. He learned to decipher behavior and gestures. He learned more about his capabilities and his needs. It was needed – for both of them. I am the one with the rules, the one who gives him chores, and teaches him independence. Matt was feeling a bit trapped – after all, he was a grown man and he wanted to feel independent. Going with Tom provided that. It also brought them closer than they had ever been.

Matt never cried for me. He was homesick, but not overwhelmingly so. No, I’m not hurt – well, sometimes a bit jealous, but not hurt. I’m secure that Matt will be fine with his daddy and I know that Matt is fine being away from me – the female. We missed each other terribly and talked everyday, but our bond is different - it’s secure. Matt knows I will always be with him, even when we are apart. It’s different for how he feels toward Tom.

Matt’s biological father left him. Years later Tom and I were married. One day Matt crawled into my lap and tucked his face into my arm and cried. After much quizzing he revealed that his sadness was because he had no daddy. Tom walked into the room to see what the problem was. I looked at Tom, “Matt is crying because he has no daddy . . ..” Tom gently leaned in toward Matt, “I would love to”. I asked Matt if he wanted Tom to be his daddy. His face appeared from beneath the fold of my arm and he looked at Tom. A brief “Really?” crossed his face. “Will you be my daddy?” He said sheepishly, as if he was afraid a NO would follow. But Tom smiled a beautiful genuine smile and said, “Yes Matt, I will be your daddy”. From that point on, Matt and Tom were bonded. Matt stopped calling Tom by his name and called him daddy instead – and Tom always answered. Yet, with Tom having contracts so far away I have to wonder if Matt is worried that this daddy, the one he chose to be his daddy, would maybe leave him too.

Knowing they are so close is a blessing for me. I know if something ever happens to me, Matt will still have Tom, and Tom would never leave him. Matt just needs this assurance continually reinforced.

Tom comes home next weekend – another contract completed. Matt counts down the days each morning and crosses a day off the calendar, spins around and gives me high-fives after each count. His excitement spills over into everything we do, whether it is shopping for groceries, shoveling snow or cleaning the house. We celebrate the end of each week with going out for pizza. We talk to Tom everyday, and the excitement is growing for all of us.

Six days left. What a wonderful reunion it will be!

Friday, February 26, 2010

Garden Map

Video games. Personally, I've never been a big fan. There are some I have played, mostly to play with my kids, but I could never get addicted the way my kids do. When the video game for Jurassic Park came out we had to buy it for Matt. Dinosaurs and jungles and various weapons of destruction – what’s not to love? I learned to play and even made it to the end eventually, but as I said, I didn't play very often. Matt, on the other hand, was a Jurassic Park ninja at the age of 7. He played daily and for hours at a stretch. He had to win – just had too! Matt competed with Jacob, Sarah, Tom and me and won the 99% of the time. But against his older brother, Christopher? Well, a clash of the titans describes it best. Speed clicking the controller, thumbs flying, bodies in motion, eyes glued to the screen – a true battle of ninjas. It was because Christopher was so good at it that Matt learned the secret codes, found more hidden points and learned to read the island map. The map had a “you are here” and showed the various locations of battles and treasures and how to get to them. This led Matt to use real maps. It also led to his first self-made map.

I do a lot of yard work because frankly, I love it. I plant gardens and flower beds and create walkways. I had Matt outside with me as I tilled the ground. Matt had a small train box car that he was making ramps for so he could watch the little truck take flight – he loved watching trajectories, remember. He always carried paper and pencil with him to draw and his paper lay in the dirt as his truck attempted the next Evil-Knievel stunt.

A few days later as we were having lunch Matt brought me a picture. A confusing set of lines, an X and what appeared to be a box car. The paper had a bit of dirt on it. I told him how nice it was and gave it back. He handed it back to me. Pointing at the X he said “yellow box car”. “It’s a nice box car”, I said. Not good enough – he pointed again, “yellow box car”. O.K., what is it about this box car? I stared at it, trying to make sense of his picture. A picture with a stick-figure of Matt, the house, an X and a box car. Frustrated with me, he turned and left. I looked in on him after lunch. His video game was on pause and he was drawing.

The following day he brought me the picture again and pointed to the X and said “yellow box car” – and again the next day, and the day after. Wow! I was definitely a slow learner. A few days later I took him back outside to play while I again headed for the garden. When Matt realized we were headed outside he ran back to his room to get his picture. He stopped at the door and looked at his paper. He then made very deliberate steps across the deck and into the yard. I wish I would have continued to watch as he took each step according to plan, but I missed it. I had assumed he was just playing some odd Matt-type game and instead of watching him I went to the garden. Before I started digging I looked over at Matt. He had also come to the garden. Paper in hand, he dropped to his knees and began to dig. Now I had to watch!

Matt turned over the dirt by the handfuls until finally his hands brought up a small yellow box car. Oh, I get it! Matt’s picture was a map. He had buried his truck in the garden and drawn a map to its location. The confusing set of lines had actually been a quite accurate diagram of the house and lawn. The box car was underground and the X – well, the X marked the spot.

I asked Matt if I could see his picture again. A big smile shone brightly on his face as he happily showed his map. He had written “You are here” on the line that represented the back door. He must have added it after I had trouble deciphering the first map. He joyfully took his yellow box car back inside – he looked so triumphant.

Matt had used the island map on his video game as an example for making his own map. He then tested the map, and seeing that it confused me, had adjusted the map to more accurately depict the starting point. Supposedly, autistic children are not able to engage in imaginative or creative play. Clearly, this is not accurate. Matt demonstrated both imagination (the garden was the jungle) and creativity (actually making a map of his hidden treasure).

It would be more accurate to say the symptoms of autism at the onset include lack of imaginative play but it will not last their entire life. So many symptoms a parent notices at age 2 simply dissolve slowly away as the child grows and learns. There are a few aspects of autism that will never fade away. I know Matt will be autistic for the rest of his life, but to assume that all the behaviors at onset remain is simply not true. Every child is fully capable of learning new things. The mind is not completely hard-wired to autism. Many of the newly forming connections are sending the old autism connections packing.

Or, to put it another way, a new highway is being constructed and the old dirt roads eventually get covered by grass and fade into nature. Here, let me draw you a map . . .

Thursday, February 25, 2010

Hope in the shape of an egg

Do you remember Little-foot and the gang from the animated movie series The Land Before Time? Little-foot and his friends were baby dinosaurs separated from their parents, lost and trying to find their way to the utopia for dinosaurs, The Great Valley. This movie had 2 of Matt's favorite things; dinosaurs and babies. We absolutely had to buy the video tape for the original movie and for each sequel that came after.

Matt was still a wee one himself, between 3-4 years old. He would study his own features in a mirror, look at pictures of himself as a baby, and at some point made the connection that big people come from babies, and that there were people that looked like him.

He made this connection by looking through a book I had on babies - one of those "your baby will be doing (some mile-marker) at this age" book. It was filled with pictures of Gerber-type babies sitting, standing, eating their peas. He would often ask for the book - using his pre-speech gesture, or a simple "baby" and a "gimme" gesture. A few times of me retrieving the text revealed its location and shortly thereafter he would get the book himself. I always assumed he was comparing his face to those on the glossy paper, but now I think there was more to it than that.

As with all videos Matt loved, The Land Before Time was played over and over (and over and over) until everyone in the home knew each line by heart. One of his favorite scenes was Little-foot being born - he hatched from an egg. Ah! Eggs made babies. Matt watched his video, and looked at the baby book almost daily.

One afternoon I found him on his bed with his hands closed gently around a treasure. "What do have, Matt?" I asked. Slowly he open his hands forming a gentle cradle around an egg- yep, an egg. He looked at the egg and softly said, "Baby" as if the word itself could break. The egg from our refrigerator, in his eyes, was the offspring of some baby dinosaur. He cupped the egg and slowly brought his hands together over the top, once again sheltering his egg. It was so cute! Of course, now I had to try and explain to him that a dinosaur was not inside, that we actually broke open eggs on purpose and ate them - just like the scary, mean dinosaurs that chased Little-foot and his friends! I wasn't ready to explain and certainly didn't want him thinking of me as one of the evil, bad guys, so I let him keep it for awhile. I found the egg later, wrapped snuggled in a blanket. I returned it to the fridge.

Each day Matt would retrieve an egg from the refrigerator and take it to his room to cuddle and warm. Each day I would find it and put it back until finally one day I realized I would just have to break it to him. I took an egg from the refrigerator door and had him watch me as I broke it into a bowl. See? No baby. He was confused. There should have been a Little-foot in there. Where was the dinosaur? I explained that this egg was not a dinosaur egg, which were much bigger. I tried to explain that dinosaurs are extinct- gone from the earth, and there were no dinosaur eggs left to hatch. He seem to sadly accept this demonstration and the crude explanation - at least for that particular egg. He sadly went to his room mumbling something about how I had "gotten the wrong eggs".

This is more than a simple story about a boy and his egg. There was more going on here besides Matt relating baby pictures to himself and to the characters in his movie. Sure, he had made the connection that everything living starts out as a baby - and that he was still a "baby" himself, but more importantly he demonstrated concern for his own "baby". He had saved the egg from the cold, cradled it lovingly, warmed it, and kept it safe. He showed empathy for a little lost egg. This all came at a time when Matt seemed so oblivious to the rest of the world, didn't want interaction, and seemed cocooned in an autism blanket. The simple act of taking an egg from the refrigerator showed that was all wrong. Matt did see the world - just not while we were looking. He did want interaction - just didn't know how. And that autism blanket? More a moth eaten old rag!

Matt caring for his unborn dinosaur gave us what we needed most at that time - a glimmer of hope.

Hope . . . in the shape of an egg.

Tuesday, February 23, 2010

Night Owl

It's early, really early. I usually get up at 4:30 am, but I couldn't sleep. So here it is, 3:00am and I'm getting up. I walk out of my room and give Matt a hug - he's just now headed for bed. This is not unusual for him, he's a night owl.

Most people have the routine of getting up around 6-7 in the the morning, waking the kids and getting them off to school and everybody has a busy day, returning home in late afternoon, having dinner around 6 in the evening, relax with a bit of television and off to bed by 10pm. We aren't like most people. I work both day and evening shifts and Tom works nights. Matt "works" nights. When he was still in school it was difficult for him to rise every morning so early and be subjected to noise and commotion at a steady rate all day. His first decision as a new graduate was to allow himself the luxury of getting up and going to bed on his own schedule. His schedule is now up at 3:00 pm and back to bed at 3:000 am. He sleeps 12 hours almost every "night". The amount of learning that has taken place since, along with his level of communication ability, has jumped considerably since he adjusted his schedule.

Everyone has a biological rhythm set just for them, but most people adhere to the cultural norms in order to work. For Matt, sleeping until 3 in the afternoon has made him a very easy-going young man. His stress level is very low and he seems to be happy all the the time. This would probably be true for anyone that allowed themselves to indulge in sleep, but that is not the only thing at work here.

From 10pm to 4am, Matt has the house to himself. The noise level drops. There is only the sound of his TV or his music - no competition with mine. The phone doesn't ring, the dogs don't bark, there are no big trucks downshifting past our home, and no commotion. His brain is not overwhelmed by sensory input. This allows him clarity of thought and therefore less stress. I use to have to tell him to turn down his TV or his music. He would blast the sound to compete with others in the house, but not anymore. All the kids are grown and moved on and the activity level around the house has changed dramatically. Now, Tom and I and Matt each have our own schedule and they don't conflict. Each of us has our quiet time, our busy time and our family time.

I thought about making him go to bed and getting up earlier, but I couldn't come up with a good reason as to why he should. Actually, all I could come up with is why he should just keep the schedule he has made. It's not like he's in need of supervision. He's 24 years old and can handle responsibility pretty well. If he needs me, he knows where I am and can come get me - but he rarely needs me. We have a meal together in the evenings and time to share stories or watch TV together everyday, so it's not like he doesn't interact. He goes places with me in the evenings - the store, visiting the brothers or sister, or to the movies. We get the chores done in the late afternoon - I'm not hearing a vacuum cleaner at midnight. So why change? On days where I have to take him to the dentist in the morning or to some other appointment, I warn him in advance that he will need to get up early and he does without argument.

What good has come from this schedule? Well, he reads - novels! He watches certain shows - but not the exact same one over and over. He draws - for pure joy. He takes great pride in his ability to do his chores. He is proud of himself and he accepts who he is. All children grow up and find their niche. Who they want to be comes together with who they are and Matt is no different. He doesn't fret about the fact that he is different anymore. He knows he can change what ever behavior he wants. He likes himself. He is confident.

As parents we accept the path our children take as adults and feel great pride when they come to the point where they are happy in their own skin. Matt is happy with who he is.

Temple Grandin was asked in an interview once if she wanted to be cured. Her reply was no. She was happy with who she was and didn't see the need to have to be like everyone else. Matt is on that road. He has certain goals to lessen the effect of autism on his ability to become independent, but he is not interested in being anyone but who he is. Matt is loved and accepted by his siblings, his parents and his friends.

The best part is that Matt knows this.

Monday, February 22, 2010

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.

Sunday, February 21, 2010

Comic Relief

Matt loves comedy. He loves watching videos, cartoons and TV shows that depict people falling, getting hit unexpectedly, running into immovable objects and the like. It’s difficult for me to pinpoint a start date on his sense of humor. Was it always a part of him? I have thought hard about this. When I think about his first autistic year, just after age 2, I remember it was the loss of his smile and the sound of his laughter that bothered me most. I remember making sure that every time he saw my face - each quick, fleeting glance toward me - he saw me smile. I laugh easy, and I smile easy so making sure he saw me smile was never forced, just bigger and brighter.

I can remember him laughing at age 3 when I played airplane with him. Taking him by his hand and foot, I would swing him around and around, alternating going higher with nose dives. He loved being spun. Whirling around always made his head tip back slightly as if he were allowing pure joy to flow over him.

The return of his laughter was his first communication attempt after autism set in. Its return after a year of absence was a much welcome sound and very contagious. When he laughed we laughed. At first it seemed as though he needed reassurance of his emotion and would check faces to see if they were smiling too. Was he trying to gauge if we were safe to be around or if laughing was acceptable? His sense of humor began a few years later after he discovered video tapes.

We were unable to pick up basic TV channels in our rural mountain home. Every channel hissed with “snow”, except one. That one channel was much too fuzzy to watch for very long without getting a headache. How did we survive this lack of technology? We bought a VCR and video tapes – lots and lots of video tapes. We had a pretty good collection of cartoon shows on tape and Matt would watch his favorites over and over (and over and over). It wasn’t long before he also showed an interest in comedies too, especially the type that had a 3 Stooges theme of hitting, falling down, and exaggerated facial expressions.

Sometimes he would creep to the living room where his brother would be watching a tape and although he wouldn’t sit down with him, he stayed in the room, orbiting the perimeter, and laughed along with him. His need to mimic what he saw and heard affected both his speech and behavior. His speech began including strange sound effects, like “boink” and “wham” and “Whoa” New behaviors took on a comedic tone, like pretending to trip, or hit his head. He experimented with these routines in the safety of his room and on occasion would test them on us. After “falling” with exaggerated arm gestures he would look in our direction to see if his new stunt brought the same smiles or laughter that the cartoons and comedies did. It did.

His first interaction with the family poker night at Thanksgiving was one of these routines. Matt was 10 years old. We had set-up after dinner as usual and invited Matt to join us. He replied with a short “No thanks” and sought the quiet and safety of his room as he did every year. But this year was different. Tom had a new video camera and we decided to video our game. Matt was intrigued. He would pop out of his room, check the camera, and then pop back into his room. He did this several times. I kept watching him, trying to figure out what he was up to.

The game went long into the night. There was laughter and teasing and conversation – all of which Matt could hear from his room. We were discussing the need to take a much needed break, stretch our legs and dig into some left over turkey. The video camera continued to film. Just before everyone pushed back their chairs, out came Matt. He walked right past the camera and directly into the kitchen like a man on a mission. He kept going and walked straight into the back door, bounced a bit backward, made a few exaggerated arm gestures, then fell hard to the floor. He fell so fast we were taken aback - did he really just do that? The five of us just stared for a moment - then suddenly burst into laughter. There were a few “Are you alright?” questions, but we all knew he was acting. His smile said it all.

How long had he been planning this? Did he think about it as Tom set up the video camera? Was all that popping in and out of his room actually to check the viewfinder? After all, he needed to know the exact path to keep him on camera. Matt, it seems, had calculated everything. He even waited for a break in the game so everyone would see.

Matt wanted to be involved, but did not have the complex communication skills to just jump in. He needed to test the waters, see if we were safe to be around. His comedy routine was his way of testing us. When we laughed, he smiled. There were pats on the back, giggles and attention directly on him and he loved it. Unfortunately, he could only deal with all this attention a short while before returning to his room, but I assure you he left pleased with his work.

Even though Matt can now communicate very well he still enjoys providing us with comic relief. He reveals his sense of humor daily and spontaneously in both his speech and behavior. And when the need arises, he will use it to communicate when he can’t quite find another way to interact. His smiles draw people to him and his humor keeps them there.

When Matt is happy and joking around with the people he loves, it is the autism that is hidden. All we see is Matt, just Matt.

Saturday, February 20, 2010

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.

Friday, February 19, 2010

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.


Thursday, February 18, 2010

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?


Wednesday, February 17, 2010

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.

Tuesday, February 16, 2010

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."



Monday, February 15, 2010

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.

Sunday, February 14, 2010

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.