Shave and a Haircut

When the boys were small I cut their hair. Of course I was pretty awful at it in the beginning and must confess there were several times the end result was ghastly. I’ve improved. I’m still not a beautician, but the style is real simple. I have taken Christopher and Matt for professional hair care, but Christopher would complain non-stop about his newest cut and Matt would put his fingers up between the blades of the shears to stop the process. The fight just wasn’t worth it, and in the end I just cut their hair myself.

The challenge of cutting Matt’s hair was an eye-opening event. I would let his hair grow just as long as I could stand it, until finally I had too get out the shears if I wanted him to be able to see. His first few cuts had been an enormous drain of my energy and I knew what I was in for. He would squirm, twist, his hands would unexpectedly pop upward when I least expected. It was obvious he hated the sound of his hair being trimmed – especially around the ears - his hands would fly up to cover and protect them. I would be exhausted from the event. This was not the worst part of the ordeal.

The worst part came after the scissors was put up and the plastic cape removed. Matt would hop down from his chair and then look sadly at his hair on the floor. With tears in his eyes, he would bend and pick up hands full of clippings and try to place them back on his head. He must have asked himself why? Why would I do this to him? Why would I remove parts of him and sweep it into the trash? I can’t imagine his confusion or depth of despair at the forced removal of pieces of his body. It took years of watching both his brother and Tom get hair cuts before he realized it was not a mutilation and would allow me to cut his hair in peace. Now he comes willingly to the chair, keeps his hands under wraps, and checks the final style in the mirror to make sure it is to his expectations - all very normal behaviors.

The need for a shave didn’t arrive until puberty. He was learning to wear deodorant, brush his teeth himself, and to take his own shower without help or supervision, all around the same age. His facial hair started to come in and we attempted the “shave”. I tried to help him once or twice, but I don’t shave my face and I just couldn’t seem to help him do it right. Tom stepped in at this point and went over the procedure step by step, taking his time and explaining each part. Matt thought the foam shaving cream was cool and liked putting it on his face, but he hated the scratchy feel of a razor. His face always appeared irritated and acne started to form. After a year we switched him to an electric razor. He hated the buzzing sound, the blades tugged at his whiskers and he just couldn’t stand to keep rubbing this metal torture devise across his face. In the end, we had only one choice left – keep the beard. He had watched Tom and Christopher shave, and this help to at least give him the courage to try it, for which I am thankful. Matt was only in 9th grade when Matt began to grow his beard. Christopher also grew out his facial hair, and Tom allowed his own beard to emerge again. I watched as Matt’s face transformed to one with a beard. He looked so much older. To be truthful, he looked a bit scary – a big guy, beard, a deep voice – someone you would think twice about messing with. I began to like this new Matt for exactly that reason. No stranger would ever think of him as helpless and this brought me some peace of mind.

So, Matt has a beard – a really cool one. He’s happy with the way he looks.

He lets me trim it up and allows me to thin it out to make it appear neat and tidy, but not because he needs it to look a certain way. I’m the one who wants it trimmed. Matt would let his beard grow to his feet if I let him.

At the rate it grows it could be there in about 6 months.

Communication: A 2-way Street

You hear the diagnosis – autism. You tell your family and friends. No one, including you, has any idea how to really communicate with this child. The child seems to ignore you, won’t even look at you. You want to give them a hug and they squirm to get away. You know there is a wall and you have to break through it - the question is how? As you are dealing with all this you are also watching others shy away from your child. No one knows how to interact.

We went through this stage. At the start everyone is sympathetic and I am certain they hurt with me. My family and in-laws wanted to help, but they had no idea how, and I couldn’t tell them. I was not an expert, just a mom. I couldn’t teach my family the basics because I didn’t know them myself. I would have both boys with me at a family member’s house, but only one child was seen. Matt would stay back, his eyes cast downward. He didn’t respond to grandma’s “hello” or Aunt Connie’s questions. He didn’t want to be held by my best friend, or play with the other children present. One or two attempts and their focus would go to Christopher, and later to Jacob and Sarah, and Matt was ignored – forgotten. It broke my heart.

It hurt like hell back then. Now I can see it was not that my family or friends were being cruel - they simply didn’t know how to react. Almost a fourth of our brain is devoted to sight. Part of this is because we read facial expressions and body movements as part of our silent communication. You say “hello!” to someone and you examine their face. Do they smile? Do they roll their eyes? Do they make a grimace? Is there joy in their eyes? We use these facial clues to know what to do next. Do we turn and walk away or grab them for a hug? We follow through without thinking because we have already processed the emotion on their face. Matt reads emotion and body language, but he can’t process it the same way. He doesn’t know right off if he should give a hug or hide in his room.

As Matt got older and could speak, people would attempt to interact a little bit more. They were getting feedback and it gave them incentive to continue. Unfortunately, as soon as Matt dropped his gaze or his face scrunched up as he tried to figure out what to do next, they would take this as a sign he did not want to continue and the interaction would abruptly end. I’ve seen this replayed a thousand times and at every age. If Matt’s gaze falters, if his facial expression changes, if his body language hints at being uncomfortable, people give up and walk away.

As Matt got older I got wiser. I could see this dance between him and others and would make comments to help the interaction be more successful. It doesn’t always sink in and it leaves me frustrated and sad. There have been many times I have just wanted to scream, “please try!” to those around me, but I let it go and try to deal with the sadness I see in his eyes. It’s not easy.

Matt is autistic. It is a communication disorder. We all know he has trouble communicating, but don’t we all too some extent? He wants attention – but can’t ask. He wants love and friendship but can’t state it clearly or give the usual signs. So here are a few pointers to help you on your own journey to understanding the autistic mind. Always look at him and give a smile. Always say hello when you meet him and goodbye when you leave. Leaving without goodbye hurts him. Without a goodbye, he feels left out, part of the background, unimportant. Include him in the conversation. Offer him a seat. Tell him a funny story, talk about your day. Invite him join in. Be patient. He may not be able to find the right words as quickly as he wants to and he can become a bit frustrated. Help him out. Help him find the right words. He’s always grateful and will tell you “Yes!”

A few winters back we had an emergency trip to Illinois. My boy’s paternal grandmother was dying. She had always been quite special to both of my boys and she was close to both of them even though we lived 1000 miles apart. On our first visit to the hospital we came across my ex-husbands extended family. They were polite and sincerely happy to see the boys. Their father had not had any communication with Matt or Christopher for years except the occasional card. Matt did not know his biological father. He had long ago picked Tom to be his daddy and he never looked back. His father stepped up to him and said hello, expecting a big hug and a smile. But Matt didn’t know him, and cast his eyes downward and took a step back. His father became angry, and actually told Matt, “Well that’s just fine, be that way and see if I care”. How was Matt supposed to respond? His own father had not accepted him as autistic and had no desire to learn how to communicate with him. Matt’s facial expression and gesture immediately brought a negative response from his father. Instead, his father should have introduced himself, shook his hand and talked with him softly. Matt would have felt at ease and they could have talked. I wish I could say this was an isolated incidence, but unfortunately, that is not the case. I have seen this type of backward interaction from others also.

The autistic individual needs someone else to be the first to initiate an interaction. Don’t wait for them to come to you – it’s not going to happen. Matt, as with many autistic individual, is quiet and seems aloof. It’s not the same quiet and aloof you are used to seeing in normal individuals – for an autistic person, this is protective. I know Matt is actually watching expressions and gesture to gauge a person’s emotion and temperament. He won’t even consider communicating unless he feels safe in your presence.

Reading about individuals with autism brings people to different, inaccurate conclusions; that autistic people are mentally deficient or that they can’t feel emotion. Both are ridiculous and inaccurate stereotypes. Many, if not most autistic individuals are just like Matt – they are both intelligent and sentient human beings.

I wish others could see in Matt what I see. To do that, you have to communicate with him.

A Quiet Mind

The hearing of an autistic individual is acute, as I mentioned before. The sounds we ignore – background noise to us – is much louder for them. They hear everything as if nothing was background. I understand his need to have these noises diminished. Tom has ringing of the ears, and needs some noise to drown out the ringing. It’s not that different for Matt.

When he was a little boy, between the ages of 3 – 6, he would come to my bedroom at night, dragging his pillow and blanket, and lay down on the floor next to my bed. I would lightly brush his hair with my hand and speak softly to him, and then place my hand on his cheek to let him know it was alright. He would put his hand over mine – Matt’s version of a hug - and then would put the pillow over his head and fall asleep. There were at least 3 reasons for this behavior; 1 – he needed to feel safe, 2 – he was afraid of the dark, and 3 - he needed the sound of my fan.

Feeling safe . . .a major emotional need for an autistic child. That feeling of safety allowed him to explore a world he found difficult to enter. If you were in a strange land and didn’t know how to communicate, wouldn’t the touch of someone you love comfort you? He found that being near me, having my hand reassure him, was enough to put him at ease in the dark.

The darkness of the night is scary to most little children. They can imagine monsters in the shadows. Darkness has always made him fearful. He needed the lights on in the house at night. We always kept our bedroom door open and the hallway light on. Keeping our door open let him know it was OK to come in. Keeping the hallway light on provide the security to travel down the hallway to our room in the safety of the light. To this day, Matt still must have his bedroom door open and the hallway light on when he goes to bed.

I run a fan at night to drown out the sounds of the house. I’m a light sleeper and the fan keeps me from waking up to every little sound. Matt found this sound to be quite satisfying. The hum of the fan kept the other noises as bay. Yet, in order for this to work he had to have the fan right at his head, only inches from his pillows. In addition, Matt needed 2 pillows – one to rest his head upon and one to cover his head to filter the sounds of the house. This behavior remains to this day. He still needs his fan on, close to his head, and a pillow over his ears.

When we go on vacation we can not forget his fan or his pillows. When night comes and he is prepares for bed, he must first set up his fan, usually on a chair so it can be close to his head, and arranges his pillows exactly the same as they are when he is home – one to rest his head upon, one to cover his head to muffle the noise.

In understanding an autistic individual a person must realize that these behaviors are not abnormal, they are needed. A feeling of safety is a must to any child. Matt feels very secure in his surroundings now, he can sleep in his own room because he knows we are just a room or two away. He learned to cope with the noise level disparity in his own way. What would have happened if I would have made him sleep in the dark, in his own room, without a fan? I can’t imagine how different he would be. I am sure his progress would have been affected tremendously. Such a simple thing to allow him him to find his way gave him peace. His mind could absorb so much more. When a child feels safe, and the mind can rest, then the learning can take place.

I can’t stress enough how much these simple things are needed to achieve success in teaching new behaviors and helping the child to shed the old, autistic behaviors. Each child is different. Remember, step one in the re-teaching of Matt: Learn how he learns, see what he sees, and figure out why he needs what he needs.

Picture This

I had been trying to get Matt thinking about college for some time. In the fall of 2006 I had finally convinced him to take a course in photography at the community college. We went in, paid tuition and met with a woman in student services about his disability. He would need a facilitator – someone who could help him take notes and keep him focused. As the time for classes to begin got closer it became obvious they could find no one for the job, so I decided I would do it.

The class was small with only 8 people. The teacher was an older woman with a great passion for her craft. She gave lectures and demonstrations and Matt took it all in. He listened to the lecture, laughed at her jokes, and skimmed through the text. There were a few times I had to cover his notepad with my hand to stop him from drawing. Lecture was 2 hours long without a break, and it was difficult for him to stay focused that long. During the break Matt and I would walk and stretch our legs. We got to know the other students. They all seemed very nice and made him feel at ease. After break was the lab section - the dark room.

Matt was very excited about the dark room. He couldn’t wait to see it, then he couldn’t wait to use it, and then he couldn’t wait for others to see his final product. Homework consisted of reading the text of course, but it also included taking pictures using black and white film and finding subject matter that matched the assignment. I was involved in all of it. I heard the lectures, took notes, learned how to use the dark room and what subject matter needed to be turned in by a specific date. This was all so I could facilitate. I could not help him if I didn't know the material and the syllabus.

I walked Matt through the steps in the dark room only twice. From then on he did it all himself. I told him what subjects he needed to shoot and took him out on a drive to capture it on film. He picked the places, he took the photographs, and he did the leg work. I drove him to campus to use the dark room and he would get right down to business, taking great pride in each step of the procedure. His finished photographs were wonderful – and not just because I am his mother. A photograph of Toulouse (one of our cats), one of sunlight dancing across the river, one of the civil war memorial – all captured emotion in the play of shadows of black and white film. My favorite was his self portrait. He took a picture of the garden gazing ball on a bright fall day. The sphere was back lit, the mirrored front captured the young man with a camera to his face – it was pretty amazing.

All his work was turned in on time, all his projects were completed and I was the reason for these aspects. Matt would be willing to go take the pictures, but without prodding, he would have forgotten. He hated school as a child because of homework, and the mention of homework still brought a look of disgust. So I was in charge of keeping him on task with due dates and time management, something he would have had a great deal of trouble doing on his own. This was another part of my job description as a facilitator.

Then came exam time.

I went over Matt’s notes and my own. Matt’s notes were punctuated with small drawings where his mind would wander, whereas mine were complete and covered every little thing. Matt could not take complete notes on his own if the class was longer than 45 minutes. When he was in high school his paraprofessional did what I was doing; taking notes just in case he missed something. Looking at Matt’s notes, I could tell that he could do this on his own eventually, for they showed main concepts and diagrams. Unfortunately, he may need a few more soft courses before he is capable of staying focused for a 3 ½ hour class on his own. We went over the notes and I quizzed him. Matt has a terrible fear of testing and each quiz was an uncomfortable assault. I had to break it up to manage his fear. I quizzed him a bit in the morning and again at night. We practiced each day for a week prior to the exam.

Exam night came all too soon. Matt was given his test and I was given one to read to him if needed. He would read the question, then the multiple choice answers, then decide for a moment. I would read certain parts aloud stressing words like “except” or “not correct” or “instead of” to make sure he caught these phrases. I then watched as he circled his choice of answers. They were not always correct. I know, because I was in class and had learned this stuff right along side him. It was difficult to move on knowing he had marked the wrong answer. I had to maintain a neutral facial expression, make no sounds of disapproval. I had to keep focused on the fact that this was his test not mine.

I am a teacher. I make tests for a living. This was my son I was allowing to make mistakes - my heart was in conflict. It was so very difficult for me. After multiple-choice came the short answer essay questions. I pointed to specific words in the question to narrow his focus to what was asked, and he wrote. I read his answers silently as he continued and was happily surprised at how easy an essay was for him. Great! Matt could write what he knows pretty well. Next came the matching portion of the test. Matt could match one to another pretty well also. So, he only had real difficulty with multiple choice – good to know for future reference.

I think I was as anxious for the test results as Matt – maybe more. Yes, he did get questions wrong. No, he didn’t fail. Matt got an “A-” for the photography course. This made him very happy, as anything less than an “A” would have caused him distress. Matt has always needed the top grade - really needed it. Lower grades actually hurt - made him feel less than perfect. Maybe because he knows he's different. Maybe a top grade makes him feel more . . . normal.

It’s been a few years since his photography course and I am just now getting him ready to try another – painting this time. The ground work has been laid – Matt comes with me to the college every Tuesday night to familiarize himself to the campus. He’s getting to know the office staff and my students are always very nice to him. I would like Matt to take the next course without a facilitator, but what if it's too soon? I want him to be comfortable doing it on his own, and an art maybe just what he needs to feel at ease doing it all himself. I would never dream of throwing him into an English course without a backup (facilitator) – at least not yet. I am afraid of what could happen if he gets a "B" (gasp!!). Would it sabotage any future chance of his adult education?

As for my own experience as a facilitator, well, let’s just say it’s harder than it looks. Your job is to help – but not too much. You have to learn what they learn, know all the due dates, and you have to be OK with the student putting down the wrong answer. You have to be ever vigilant of facial expressions and utterances - an autistic individual can read both of these forms of communication easily. I was always the one stressing to Matt’s paraprofessionals (facilitators) in the high school that his work had to be his own - I needed to know what he could and could not do. I never realized how difficult a job it really was until I had to do it myself.

So, to all those paraprofessionals out there that assist our children - You make education possible. I am in awe of your diligence and admire your many talents.

From the bottom of my heart - Thank you.

History vs. Hollywood

Matt is a History Channel fanatic. He is also fascinated with disasters. What could be better than a disaster show on the History Channel? Unfortunately, Matt believes what he sees on the History Channel – all of those animations and graphics and recreations. After all, if it is on the History Channel it must be true. Of course, the narrative of the show describes events and what is possible and discusses both the pros and cons using various experts. But Matt doesn’t seem to listen to everything they say – nope, just the actual disaster parts. The Mayan Prophecies and Nostradamus Effect are the two shows I’m really concerned with as Matt has watched both of these repeatedly. Both discuss the Mayan calendar and the prediction for the end of the world.

A person learns by various types of stimuli and usually has one type that is better for them than the others. I’m talking about visual (what you see), auditory (what you hear), and tactile (what you do with your hands). For some, watching another perform a task is the best, where others want the explanation of how to do it and still others don’t quite get it unless they put their own hands on it and do the task themselves. All have their good qualities, and all contribute to the learning process. Each person knows which is best for them.

Matt has always been more of a visual learner – watching others, observing phenomena, deciphering schematics and maps. Of course he has learned many things through both tactile and auditory methods also, but he is definitely more visual. For him, his autism has his senses acute. That means certain things feel weird, and sounds can be painful, even bright lights are avoided. His sense of hearing is very fine tuned – and not in a good way. When he was young his mind would pick and choose what auditory stimuli were good and which stimuli were bad. For example, the sound of a lawn mower made him cringe forcing him to cover his ears. Fire alarms during a fire drill at school just about tore him to pieces. No one in the house could ever raise their voice in anger or yell (parent behavior modification resulted from that one!). Dogs barking, vacuum cleaners running and trucks downshifting on our road all brought his hands to his ears to lessen the pain. No wonder autism is a communication disorder – we are a species that relies heavily on sound to communicate, and sound was not welcome in his world. So, it should not surprise me that he had developed selective hearing.

Over the years he learned to listen better. He learned that if I was talking to him he needed to look at me. I had to make sure my voice was calm and soft. He learned to connect the visual (my face) with the auditory (my voice). I thought we were past the stage of learning to listen until we took him to the movie 2012.

On the way home Matt seemed on edge. Something was wrong. Shouldn’t he be talking excitedly about the movie he had just seen? I turned to him and asked, “You do know that the movie was just fiction, right? It wasn’t real Matt”. “Yes it is!” he countered. This caught me off guard. What? Where did he get that idea? “It’s true”, he continued, “I saw it on the History Channel!” He was referring to the show, The Mayan Prophecies, about the world coming to an end in the year 2012 – because the Mayan calendar said so! He obviously had not actually listened to the narrative of the show which describes what some people think, what the possibilities were and the science that shows it to be just a legend. “The History Channel was only showing what some people think”, I argued back. His face became red with anger. “It is true! It’s on the Mayan calendar.”

We argued all the way home but I could not convince him that he was not going to die on December 21, 2012. He had been living with the fear of the world ending, of him dying, knowing there was no safe place on the earth to hide. It made me sick to think of him feeling his life would soon be over, that he had absolutely no control – that death awaited him in 2012. I was stunned to find out that he felt this way.

When we arrived home I talked to him again about the History Channel and told him to really listen to what they said. “You need to just trust me on this – just listen to all of what they say, Matt”.

Today the DVD came out for the movie 2012 and I took him to get it. We hurried home so he could see his new movie before we had to leave for class. I watched it with him, and we talked a little – mostly about the Yellowstone Super Volcano (we will never be able to visit there because of his fear that it will erupt), but I didn’t argue and didn’t make any remarks about it being a Hollywood flick. I just wanted to enjoy our time together.

As the final scene ended and the credits started to roll, Matt turned to me and said in his happy, on-top-of-the-world- voice, “This is just fiction, it isn’t real”. Cool! That was unexpected. He must have watched the Mayan Prophecies again and actually listened to the debate. “That’s right, Matt”, I said smiling. Wow! He had made a judgment based on the auditory alone. He actually allowed his ears to take precedence over his eyes – at least for this one time. I wanted to jump up and dance, dance, dance! But I sat there calmly, allowing him to take full credit for a job well done. “You like disaster movies a lot, don’t you?” I chided. Matt then began to list his favorite disaster movies, adding at the end that they were all just fiction.

Yep, Matt feels secure again. He knows that his life still has endless possibilities and decades more time. He knows movies are just Hollywood and The History Channel is more than just cool graphics.

Arizona misadventure - part 2

We were excited to be going back home to Virginia. The job offer required we be back in 1 week and that meant re-packing the house, renting the truck, loading the truck and various odds and ends plus a 4 day drive home - all within 7 days. With each task Matt was a tremendous help. He went with me at 3am each morning to get boxes from the local Wal-mart before they were crushed. He packed boxes, taped boxes, stacked boxes and lifted heavy items, all with a smile on his face. Tom had been offered a few evenings of per diem shifts and went in to work each afternoon, leaving Matt and I to take care of business. I really found out what a strong young man he was. I called and turned down my job offer and contacted the college back home. They would be happy to see me back, but classes had already begun and the soonest I could get work would be the next summer. We would be strapped for cash all winter – but we would be home.

We picked up the moving truck early one morning and began loading almost immediately. We were trying to pack in a hurry and our packing was not as precise as the packing to move to Arizona. We kept shifting things around and working out dimensions. Tom was on the edge of the truck adjusting boxes when he lost his grip and fell. At the last moment he caught himself, but still landed hard and fell to the ground. He broke his ankle. It started swelling immediately. We had no insurance, and needed both of us to drive. There was no other choice but to bandage as best we could and keep focused on our time. Matt was really needed now. Tom could not walk, could not carry, and he was miserable with pain. Matt rose to the occasion. He carried and loaded the truck, carefully arranging each item to fit. He helped clean the house so we could have the deposit back, and took care of his daddy by bringing him drinks and food and ibuprofen.

We left on time, Tom driving the truck with his ankle wrapped tight, and me driving the jeep with 2 dogs. Matt rode almost exclusively with Tom. He helped him as best he could and gave him the driving directions for home by heart.

Unfortunately, when we arrived home we found that the job offer had been rescinded by upper management and thus we were both unemployed, depleted financially, both injured (I strained my back lifting), and overwhelmed and stressed, but we were home. Tom did get a full-time job (and after a year and a half, was laid-off again). I used our retirement to make the bills until a class opened for me to teach again. And we survived. Matt used his own money to help with groceries and pay bills, and Christopher pitched in to help us financially as well.

What I learned on our Arizona misadventure was this: Matt is not a child anymore. You would think I would be aware of this, what with the thick beard and deep voice and all, but alas, I was guilty of thinking of him as my baby. Throughout our misadventures I watched this young man rise to occasion and take on overwhelming emotional stress, physically hard labor, and a work schedule that any blue-collar worker would admire. He was generous and caring and could let us have it verbally when the occasion called for it.

Sometimes his body language, sometimes his speech, gives him away as someone . . .well, different. But anyone would be hard pressed to actually think of him as autistic. I learned that to see Matt differently. I don’t see an autistic young man anymore, just a fine, generous, helpful, young man - a young man who just happens to be autistic.

Arizona Misadventure - part 1

We love our home in Virginia. As earthly things go, it is our most prized possession. In 2007 we learned just how much our home meant to us. Tom had lost his job and with no prospects had to become a traveler. Tom is a Registered Respiratory Therapist, he helps people breathe. Most people think that breathing treatments are the only thing he does. I know better. I worked in the medical field for 16 years and know exactly what he does – he saves lives. Ventilators, blood gases, intubation, working a code are among the most important aspects of his position. Keep in mind that the elderly are not the only ones who get sick or die. Tom deals with death on a daily basis and is very good at what he does.

Tom had no other choice but to become a traveler and his first assignment was to Arizona. He was there all winter and into spring and the company wanted him there full time. They had heard nothing but great things about his work and were trying hard to convince him to stay. He loved his job, but being apart from his family was very difficult. We had to decide if we should move across the country for Tom’s job. I also loved my jobs. I taught high school biology, college biology and college anatomy. I was well respected and had tenure. It’s important to know that I became a teacher because when I was laid off Tom supported me on my decision to go back to school. He helped me when I needed it. Didn’t he deserve the same consideration? I felt I owed him and wanted him to be happy, so I gave notice and we moved to Arizona.

Matt was not happy about this. He loved Virginia – mountains, lakes, railways, and green plants everywhere. We had discussed the move almost daily for months in advance and he prepared himself for the transition. We didn’t want to sell our home and asked Christopher to take care of it while we were away. We had a 5 year plan. Five years of full-time for both of us and we could pay down our bills enough to where we could survive on just one income if needed. We could save our home. Matt knew the move was basically to save our home and for this reason only, he would go.

He carried boxes and moved furniture. He packed and unpacked. He worked so hard and without complaint. We knew Matt loved adventure and we made every possible free moment an adventure. Whether we were trying to find the closest Wal-mart or trying a new restaurant or playing tourist didn’t matter – it was all an adventure to him. Unbeknown to me, he cried himself to sleep every night.

As a traveler, the company paid the rent. We had a beautiful new 2-story home with a pool. Matt loved the pool. I could get him to come and play in the pool without twisting his arm and it brought him some relief from his anguish. One month after we settled in, the travel company ran out of contracts. We had moved across the country only to be laid-off again. Our rent still had to be paid, but without a contract, we were now responsible for the tab. We were digging into our savings at an alarming rate as this was no cheap little apartment – it was a house . . .with a pool!

To make matters worse, I hated my new job. I was at odds immediately with the head of the department. We had completely different teaching strategies. He was pompous, I was stubborn. To keep this brief, let’s just say I convinced them to release me from my contract and went searching for another job. I did find another job, but it was much further from our new home – a long, 2 hour drive. We decided we would have to look for a place closer and cheaper.

In between struggling with finances and job searches and the stress of living away from our other kids and family, we didn’t fully see how deep Matt’s anguish was. Not until one night when we were house hunting. We had driven through the terrible Phoenix traffic for 2 hours. We had been searching for a new place for weeks, something close to the school I would be working at. We came across a beautiful adobe-style western home with a huge floor plan. Tom was excited – it was gorgeous. We were discussing if we could even afford such a place and even considered selling our Virginia home.

Matt could take it no longer and burst into tears. Why would we stay in Arizona? There were no green trees or green grass or green mountains? Why would we choose to stay in Arizona and give up on Virginia? How could we? Did we not know that he cried every single night? His sobs and his anger together came pouring out. He was not a child, he was a man and he let us have it, both barrels, right between the eyes! We were silent. After a few moments, I looked at Tom, “He’s right . . .” I said softly, guiltily. Tom remained quiet, contemplating the situation. He then looked at me, “What were we thinking?” He stopped the jeep, turned and looked at Matt. “You’re right, Matt. I will fix this”.

Matt said very little as we drove home. Tom and I were conversing in short intervals, mostly about how to get home to Virginia. Matt’s tears and blatant truths tore at our heart. Neither of us can stand hearing him in pain and Tom was completely fired up by the time we arrived home. He went straight for the phone and called several hospitals he had worked at part-time in Virginia and left messages on their answering machines. He was authoritative, a man-with-a-mission. I had never quite seen him so determined.

To our surprise Tom got a phone call the next morning from one of the hospitals close to home and offered a job. Oh my God! The timing was just right; I had not signed my new contract, Tom was unemployed, and we had just enough money left in our savings to rent the U-haul home. Do we? Should we? Our Arizona adventure had been a bust – more like a serious misadventure and to go home we would risk it all.

Neither of us could wait to tell Matt. We went to his room and sat down on his bed. He rolled over and peered at us from beneath his pillow. “Matt, we’re moving back to Virginia.” Matt threw the pillow off his face and examined our expressions. Were we for real? “Matt, daddy got a job in Virginia, we’re going home!” It sank in. You could see the tears well up in his eyes and a smile immediately appeared on his face.

Sometimes it is not the autistic person who needs to learn. Sometimes it is the autistic person who needs to teach. And a little child shall lead them . . .home.

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!

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 . . .

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.

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.

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.