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  • Independence begins . . .

    This story is the follow-up on Matt taking his first unaccompanied stroll.  Matt is in North Carolina with my husband Tom (where Tom works) and I am at home in Virginia. Yesterday was the practice walk.  Tom gave Matt his own key and identification card and a key to the mailbox.  He also gave Matt a note for his wallet which provided all the emergency information.  Matt put it in his wallet without question.  Tom and Matt took a practice stroll together earlier in the day, turning left out of the apartment and walking to the mailbox.  From the mailbox they took a path that passed one of the swimming pools and circled around toward the front of the massive complex of apartments and straight toward the weight-room.  Matt practiced using his new identification pass to unlock the door and they scoped out the various equipment.  Shortly after, they strode back to their apartment and Matt got to use his entry key. No problems. Later that afternoon Matt decided it was time for his own walk.  He left the building and unexpectedly turned right.  Matt is a creature a habit.  Each time he has been out so far has been with Tom and they have always taken the exact same route.  Both Tom and I expected Matt would continue this same routine.  Tom watched from a safe distance as Matt disappeared around the next corner.  He never looked back. He walked with confidence and purpose.  His gait was quick.  Matt called me.  “Hi mama!” he exclaimed.  “Hi Matt!” I exclaimed back.  “Well, I’m on my walk!” I could hear the excitement in his voice.  This was his time. “Great!” I said, “I’ll talk to you later”.  “O.K, bye!” he returned.  Matt was alone, outside, in an unfamiliar town, taking a leisurely, yet purposeful stroll around his neighborhood.  I looked at the clock.  I paced. I played some computer solitaire and I thought about my son.  The phone rang again.  “Hi mama!” Matt exclaimed into my ear. “Hi Matt. Where are you now?” I asked.  “I’m back at the apartment” he replied. Really? So soon?  I looked at the clock again.  Only four minutes had passed.  He told me he had gone all the way around the complex.  I could hear in his voice how proud he was of himself. Tom called soon after. He told me how he had watched from the window as Matt turned right at the sidewalk.  He revealed how anxious he was when Matt disappeared around the corner - out of sight. I knew Tom must have been holding his breath.  I told him I had timed him and it had only been 4 minutes.  He told me he had timed him from when he left the building and it actually had been 6.  We both marveled at how fast he lapped the complex. Today, Tom is working. I asked Matt to please not go for his walk until after 4pm.  Routines are needed and at 4pm each day I should be home for his call.  The closer it got to 4pm the more anxious I got, waiting for his call, waiting to hear he was on his walk.  Finally the phone rang close to 4:30pm.  “Hi mama!” Matt said.  “Hi Matt, are you on your walk?” I asked.  “Uh, no. I already been.”  Matt had gone on his walk – and forgot to call me first.  We talked about his path,where he decided to go and it turned out to be the same as usual – even turning  left from the apartment as he had done many times before.  He had decided to stick to old routines. He had even gone to the weight room, but someone was there and he left almost immediately.  Matt is wary of strangers (thank God!). So, his first independent walk went well. He will walk almost every day and at sometime in the future, perhaps next week, perhaps next month, Matt will choose a new path and venture out.  He’ll slow down and take his time as he investigates the world without a hovering parent.  Matt has shopped in stores alone, he has stayed at home alone and now he ventures out alone.  Someday we will move forward again and Matt will take a bus to a destination of his choosing.  That used to feel a million miles away.  Now it feels as if it could happen tomorrow.

  • My BFF

    Best Friends Forever (BFF).  Who is your BFF?  Let’s define it first.  As I see it, a BFF is someone who knows you – very well.  This person loves you un-conditionally. They will be there by your side in good times and bad.  They are very special people because they can listen to you without forming judgments.  A BFF stands by you as your equal.  If you look around you will notice that most individuals have a friend or two – and if you look on Facebook, well, friends are listed in the hundreds (sometimes thousands!)  My autistic son, Matt, desires friends.  He wants to have someone he can hang out with, laugh with, shop with, and this desire is a natural one.  The majority of people need other people in their lives to feel whole.  Matt simply wants to feel whole. After high school Matt’s friends drifted away, as friends do.  There really isn’t a great place to meet new people, except maybe college, and we’re working on getting him to take more classes.  He needs the social impact of continued education.  But how do I help him until then? We live week to week on our income – no activities that require money can be considered.  We live in the country – we can’t even see our neighbors.  Can you see the dilemma? To make things more complicated, I am a natural hermit.  I like the seclusion of my life.  That makes me one of the few who spend as little time as possible with other people outside my own family. I really enjoy hanging out with Matt.  We shop, laugh, play Wii sports, talk about the future, discuss world events and the weather.  I teach him new things – and he teaches me.  We make a good team.  About a year ago I started telling Matt he was my best friend.  His joy in this knowledge was immense – Matt had someone who considered him their best friend!  At the time, Matt was traveling with Tom (my husband).  Tom took several contracts over the past year and Alabama and North Carolina were close enough to home (Virginia) that Matt could come home if he needed to. While he was away Tom was his BFF.  I would say, “Matt, you’re my best friend!” Matt loved hearing it.  Unfortunately, he also felt conflicted.  I could tell he had a problem.  “What’s wrong?” I inquired.  Matt would say, “Daddy is my best friend”. “That’s great!” I would assure him, “a person can have more than one best friend”.  After that, Matt enjoyed hearing me say it.  His answer was always an affirmation that he liked it – a simple “Yes!” and a hug. He’s been home since January – Tom landed a job closer to home. We are all together again and life is getting better. I had major surgery in January and then went back to work part-time.  The upside of this is that Matt and I have been spending more and more time together. He took care of me and helped get around – he treated me like I was fragile.  I learned just how deeply Matt cared about me.  I get stronger everyday.  Presently, I feel like a million bucks.  Life is getting back to normal.  In addition to our usual list of activities I have been taking Matt out for driving lessons.  A new challenge requires my focus to be a bit more concentrated on what Matt needs. My focus on him and his focus on me has allowed a chance to re-connect on an even deeper level. In addition, I realized just how much I missed him all those weeks he was away.  Matt is the light of my life.  When he’s away the world seems a bit darker, as if the color of life has drained away. Having him home I feel whole again. Feeling whole is what we all want. Last night, on the eve of Mother’s Day, as I was headed for bed I stopped in Matt’s room to tell him good-night.  “I love you, Matt.  You’re my best friend.”  I said. I gave him a big hug and a kiss. “You’remy best friend too” he replied and returned the hug. “Really?” I asked. I was honestly caught off guard. “Yes.” He said simply and gave me an even tighter hug. A BFF is a person that makes one feel whole. My son and I are BFFs – what more could a mother want? My heart is full.

  • The potential within the autistic child

    It's back to school time and I am getting to know my new crop of students.  I have known them now for almost 2 weeks and have already seen the tremendous potential they possess.  I teach at several levels; high school dual-credit, college freshman and college sophomores.  I teach 17 year olds and adults in their 50sand beyond.  The students come from every socioeconomic class, race and culture. When I walk into class I find myself filing away the potential success of those in my keep.  A parent returning to college after 20 years, a 17 year old with dreams of being a Lawyer, an 18 year old trying to juggle course work with campus activities – all are here to learn something from me.  They bring with them a great deal of potential. Potential – each student possesses it. An autistic student is no different.  It takes a bit longer to find their strengths and their weaknesses, but I know the potential for learning is there, as is their potential to succeed and achieve their dreams.  Autism used to be such a rare syndrome that people would look at my son more as a curiosity than a young mind to be opened. Teachers had to get to know him a bit, try various methods of teaching and ask a hundred questions before they realized just how much potential this quiet young man carried with him.  As the numbers of autistic individuals increases in this country (now 1:70) many false stereotypes block the view of seeing their individual potential.  A TV drama or series has an episode with an autistic child and the day after it airs everyone has become an expert. They feel pity. They do not see potential. Autism is a spectrum disorder – which means each child may have some similarities, but each child is unique in their combination of abilities and disabilities. A spectrum disorder means that children do not look alike, act alike, or have the same emotional or mental capabilities. I wish everyone would not focus so much on the behaviors. Alas, I have resolved to have more patience; after all, it takes time to educate the masses.  But what I would really like others to see is the child’spotential. Every child can learn. Each can move forward, albeit, at a snails pace at times, but still the forward momentum is there. Potential is transformed into kinetic. When potential is expected you will see it.  When potential is not expected, no one bothers to look. The diagnosis of Matt’s autism was followed by “You should put him in a home”.  Why?  He has so much potential! I know Matt has dreams and aspirations just waiting to be realized.  I know. The doctors didn’t expect much forward momentum, so they never really looked for it.  I, on the other hand, expected to see it and watched for it - daily.  The first time he walked up steps alternating his feet. The first time his eyes caught mine.  The first time he wrote his name.  The first time he got an “A” in class. The first time he hit a ball. The first time he made a friend. Last spring, Matt took his first stroll by himself. This past summer, Matt constructed a platform bed for his room. All those tiny pieces of his potential revealed themselves over the years, gradually coalescing into the man he wants to be.  All those flecks of what could be became entire glistening jewels of achievements and obstacles surmounted.  Matt is living proof that there is much potential in an autistic child, just as there is with any child. Many people do not realize their dreams.  What happened to them along their life’s road that changed their drive toward their goal? What choices forced them to abandon their hopes of becoming more?  As I said earlier, I teach individuals of all ages and from all walks of life.  I know there is still potential in all of us that can be transformed into the realization of a dream and at any age.  The autistic child is no different. The route may be longer and the hills may be steeper but there is really nothing stopping the forward momentum once the potential turns kinetic. The first step is to acknowledge that the potential is there.

  • Whose Rock Are You?

    Several days ago Matt came to give me my morning hug and upon seeing him a red flag went up.  Matt looked . . .  “peeked”.  Peeked is an expression that was used by my grandmother many years ago to describe a pale, not quite well, state of health.  I noticed his eyes were puffy and his face a bit swollen and pale in conjunction with his usual morning smile.  My immediate summation was that Matt had either been crying or was ill.  “Are you O.K.?” I inquired gently.  “I’m fine”– his usual reply, even when sick. “You don’t look like you feel very well . . .” I went on.  I felt his forehead and it was warm.  “Your eyes are puffy.  Does your face hurt?”  I continued as I pressed gently on his face above his sinuses.   “Oh?” he said quizzically.  Matt was trying to figure out what I wanted at the same time I was trying to figure out what was wrong with him.  Matt showed no response to my pressing his sinuses. I looked in his throat and saw it to be red and his tonsils slightly swollen.  Nothing severe, thank goodness.There was just enough redness to signal to me that Matt was indeed fighting some nasty little virus (how dare a virus have the audacity to come into our home!). For the next few days Matt took a decongestant and took it easy.  The decongestant messed with his sleep patterns and he was up for more hours than usual, but he acted O.K., and he ate fine.  I’m the one that was on edge.  I felt myself under a constant state of alert. You see, Matt’s autism has always prevented him from distinguishing pain and illness from normal functioning.  I can’t say with any certainty that he can’t feel pain, but he definitely has trouble determining whether his pain or discomfort is worth mentioning. When Matt was two and a half years old he was hit by a swing on the chin which resulted in a deep cut that bled terribly.  It upset Matt that a red liquid was emerging on his face, but he never showed a response to the actual pain he must have had.  That was the first sign of his sensory problems. Since then, he has had pneumonia and never coughed, ear infections where the only indicator was an occasional swipe across the ear with his hand (as if to brush it away), a urinary tract infection where the only symptom was the smell as well as other illness and injuries.  For each occurrence I have always relied on investigation and deductive reasoning and it’s always a bit scary. When he was about 8 years old I noticed he had an occasional cough and a low grade fever.  In addition, he lost his appetite and slept more.  Matt –in my mind - was very sick.  I reasoned that anything that caused him to deviate from his normal routine had to be serious. The doctor did a quick listen to his chest and declared it the flu and sent us home.  I was not convinced.  I sensed something was terribly wrong – I just knew it.  When we left his office, instead of going home, we went directly to another doctor’s office. This doctor decided to do an x-ray – mostly at my insistence.  The x-ray showed one of Matt’s lungs to be completely full, and the other nearly full.  Matt had a severe case of double pneumonia for which he was immediately admitted to the hospital, put on IVs and antibiotics and breathing treatments.  While we were there his first doctor stopped in to apologize.  He had just learned a valuable lesson about listening to a mother of an autistic child. Memories of other instances have been popping up all day.  This latest virus has me wondering how I will ever allow Matt to live on his own. How can he when he could get severely sick and not tell a soul?  How could I sleep at night wondering how he is and knowing that if I call him and ask he will always say, “I’m fine”?  Planning his life requires taking everything I know about Matt and working on every area of concern in a way he can respond to.  This is no easy task. I know I must really work with Matt to express himself, especially when it comes to both pain and illness. In addition, I have to constantly try to foresee as many obstacles as possible in order to address them early. The scary part is . . . what if I fail? I know I am responsible for this very special human being for the rest of my life and I must admit there are days when I have to wonder if I am up to it.  Am I doing right by my son?  Am I giving him what he needs?  Am I doing everything I need to?  There’s nothing like the sick feeling of failure when it comes to your child (don’t all parents have days like that?).  The sudden fear for my son, the panic of “what if” consumed my thoughts for most of the day.  Thank goodness it has passed and I am feeling stronger again.  Life goes on.  You can be sure I have now added “telling someone you’re sick” to the list of goals Matt must reach before he can live on his own. Make no mistake, Matt will live independently someday.  But realize too, that achieving all the goals is an awesome and sometimes overwhelming task.  I have my times of weakness – days when I feel so incompetent as his caretaker, his friend, and his teacher. Days when I need some gentle support to get me through. It’s a hard road, being the parent of an autistic child, but one I will gladly travel with my son, Matt and my husband, Tom. Only the parents of an autistic child know – really know – what it is like. On those scary, panic stricken days, support is everything.  So this week I have a request.  If you know a parent of an autistic child, (if you're reading this then you probably do) give them some praise and possibly a shoulder to cry on.  Let them know that you are aware that what they face is a life-long journey and that the stress can sometimes be overwhelming. Help them stay on their road and focused toward the future.  I get my support from Tom - he's my rock (thank you, sweetheart). The big question is, whose rock are you?

  • My BFF

    Best Friends Forever (BFF).  Who is your BFF?  Let’s define it first.  As I see it, a BFF is someone who knows you – very well.  This person loves you un-conditionally. They will be there by your side in good times and bad.  They are very special people because they can listen to you without forming judgments.  A BFF stands by you as your equal.  If you look around you will notice that most individuals have a friend or two – and if you look on Facebook, well, friends are listed in the hundreds (sometimes thousands!)  My autistic son, Matt, desires friends.  He wants to have someone he can hang out with, laugh with, shop with, and this desire is a natural one.  The majority of people need other people in their lives to feel whole.  Matt simply wants to feel whole. After high school Matt’s friends drifted away, as friends do.  There really isn’t a great place to meet new people, except maybe college, and we’re working on getting him to take more classes.  He needs the social impact of continued education.  But how do I help him until then? We live week to week on our income – no activities that require money can be considered.  We live in the country – we can’t even see our neighbors.  Can you see the dilemma? To make things more complicated, I am a natural hermit.  I like the seclusion of my life.  That makes me one of the few who spend as little time as possible with other people outside my own family. I really enjoy hanging out with Matt.  We shop, laugh, play Wii sports, talk about the future, discuss world events and the weather.  I teach him new things – and he teaches me.  We make a good team.  About a year ago I started telling Matt he was my best friend.  His joy in this knowledge was immense – Matt had someone who considered him their best friend!  At the time, Matt was traveling with Tom (my husband).  Tom took several contracts over the past year and Alabama and North Carolina were close enough to home (Virginia) that Matt could come home if he needed to. While he was away Tom was his BFF.  I would say, “Matt, you’re my best friend!” Matt loved hearing it.  Unfortunately, he also felt conflicted.  I could tell he had a problem.  “What’s wrong?” I inquired.  Matt would say, “Daddy is my best friend”. “That’s great!” I would assure him, “a person can have more than one best friend”.  After that, Matt enjoyed hearing me say it.  His answer was always an affirmation that he liked it – a simple “Yes!” and a hug. He’s been home since January – Tom landed a job closer to home. We are all together again and life is getting better. I had major surgery in January and then went back to work part-time.  The upside of this is that Matt and I have been spending more and more time together. He took care of me and helped get around – he treated me like I was fragile.  I learned just how deeply Matt cared about me.  I get stronger everyday.  Presently, I feel like a million bucks.  Life is getting back to normal.  In addition to our usual list of activities I have been taking Matt out for driving lessons.  A new challenge requires my focus to be a bit more concentrated on what Matt needs. My focus on him and his focus on me has allowed a chance to re-connect on an even deeper level. In addition, I realized just how much I missed him all those weeks he was away.  Matt is the light of my life.  When he’s away the world seems a bit darker, as if the color of life has drained away. Having him home I feel whole again. Feeling whole is what we all want. Last night, on the eve of Mother’s Day, as I was headed for bed I stopped in Matt’s room to tell him good-night.  “I love you, Matt.  You’re my best friend.”  I said. I gave him a big hug and a kiss. “You’remy best friend too” he replied and returned the hug. “Really?” I asked. I was honestly caught off guard. “Yes.” He said simply and gave me an even tighter hug. A BFF is a person that makes one feel whole. My son and I are BFFs – what more could a mother want? My heart is full.

  • The Covert Observation

    When Matt was very young (and very autistic in his behaviors) he was an expert in the covert observation. Covert because he was subtle, and oh so sly, in the way he watched people’s behavior and interactions.  Matt didn’t look directly at faces, as if to do so was just too painful.  Instead, he averted his eyes to the ground or to the side.  He would then take brief glances at faces or at the body language of another – just a flicker of his eyes - to take in all that he wanted to know.  Do all autistic children do that? I know they all seem to look away or avoid faces, but do they all flick their eyes to covertly observe? Have you noticed this in your child? I remember one sunny, summer afternoon taking him to the park with his older brother, Christopher. Matt was only 3 - 4 years old. The park had all the playground goodies; swings, slides, sandboxes, tunnels, monkey bars, etc.  Both boys ran toward the slides as soon as the car doors opened.  Usually, I ran with them, but on that particular day I decided I would hang back a bit and just watch.  I was an “observer in training”  back then, watching and deciphering Matt’s body language, facial expressions and vocal sounds (Matt was not speaking at that point). I felt I needed to become an expert at predicting his next move in order to avert any foreseeable trouble – and I was extremely curious.  Why did Matt do the things he did? What did he need? I sat down on the bank surrounding the play area and started taking notes – I had come prepared with a laptop word processor my mother had given me.  There were several children playing, their parents either helping them on the swings, or the monkey bars or watching from a short distance while chatting with other parents.  I watched the children too - but I took notes.  What I saw was the usual dispersal pattern of playing children – usual, that is, except for Matt.  He would always stand away from others, as if trying to keep a safe distance.  At first it would seem as though he wanted this – wanted to be alone - but after a few minutes of watching I came to the conclusion that he did not actually want to be alone, he was just unsure of how to proceed.   He would stand at a distance with his head slightly downward and then repeatedly flick his eyes in the direction of his brother. He watched Christopher play and run and smile and interact.  Matt would then move slightly closer and repeat the covert observations on his brother. His hands would be twisting and turning as he stood there – a sign of high excitement.  Matt would then get on the swings or go up the stairs of the slide where he would again flick his eyes toward his brother and the other children. Matt would slide or climb but as he did so he was also watching.  It appeared to me that he was trying to covertly observe from as many angles of view as possible – as if he wanted to assure himself the behaviors and interactions he saw would be the same from each new viewpoint. Is it a coincidence that also during this same time frame that Matt loved looking at himself in mirrors? He could stand in front of a mirror for hours, except he didn’t just stand.  He practiced facial expressions for sadness, and smiles and angry eye expressions. He would kick a leg up behind him or raise his arms while looking in the mirror out of the corner of his eyes. Matt would try to see what he looked like walking, running, and playing.  Was this because he had observed other children’s body language and wanted to see if his own movements were similar?  It was if he was asking himself, “Do I look like them?”  It finally dawned on me that Matt was teaching himself things I was not.  I finally understood that although Matt could not speak, he could think - inquisitively. He was forming major questions, experimenting with body language, and trying to decipher human emotion and interaction – all of which require some major thought sequences!  You could almost see that his brain was in the process of rewiring itself, trying to make up for the lost connections brought on by his autism. I watched Matt and Matt watched everyone else, but especially other children.  He knew he was more similar to them than he was to me or any other adult.  That right there, knowing he was a child, sheds light onto his powerful thinking process. I knew from watching him as he maneuvered through these uncharted waters that everything I had ever read about autism (and at that time there wasn’t much) was wrong.  My son was not trapped in a world of his own, there was nothing wrong with his IQ, he was not lacking in empathy or emotion.  My son was simply trying to open the door to learning communication and social skills – the same door that had slammed shut due to his autism. Matt was standing right outside that door and knocking ever so lightly.  It took some covert observations on my part to actually learn to hear his tapping and finally learn how to open the door to his brand of  communication.  I realized that I was being watched.  Every move I made, every expression on my face, every thing - every single thing - I did was under the watchful eye of my son.  A person tends to act differently when they know they are being watched and I was no different.  I soon found myself slowing down my speech, smiling more, being more patient, and exagerrating all of my facial expressions and hand gestures.  I started directing other family members to adjust their behaviors and their speech patterns also.  I changed.  Other family members changed.  We learned to communicate differently - more openly.  Once I figured out how to open that door (by learning how to communicate his way) I could help him.  I finally was able to open that darn door. It was then up to Matt to find the courage to step across the threshold - and he did. This one action - stepping through the door - didn't happen over night.  It took years of baby steps and continues even now, over 20 years later.  Matt can interact with family and friends very well, a bit differently than other people and more cautiously, but he can interact.  He can read emotions and body language, though sometimes he can’t quite understand the more complex ones, like loneliness, or the more subtle ones, like someone not feeling well.  He still watches, still practices and still takes mental notes on how to proceed in any given situation.  This is where hope emerges for a life of independence.  It is the need to be more like others that drives him and it is his courage that puts one foot in front of the other as he steps through door after door.  Most of us take for granted the simple ability to communicate with others, to socialize, to bring our ability to understand body language clues and society norms into our everyday interactions.  With an autistic child we find we need to look at all of it differently. We need to learn new ways to communicate and keep our minds open for new revelations about interactions and body language. It all starts when we as parents and care givers learn to take notes on the behaviors and body language of our autistic child.  Take some time today, right now, and make your own covert observations.  In doing so, you too will be hearing the tapping at the door.  Once you figure out how to open that door (by learning how to really communicate and interact), then you too will witness something truly amazing - the indomitable courage of your child stepping across the threshold into the realm of the unknown - simply to be with you.

  • Autism, Worry and Hope

    I know I haven’t written in awhile . . . O.K., O.K., a very long while, but I have been doing some very heavy reflecting on my life, my son’s life, and the overwhelming task of figuring out our futures.  I have spent many an hour reading blogs and stories by autistic individuals, parents, andprofessionals.  Many are very good and informative, but the ones written by individuals affected by autism really get me thinking. They are written – most, very well written – by college students on the autism spectrum.  I have to ask myself this simple question, “Where’s the communication deficit?”  Maybe I’m wrong, but I must assume these individuals are on the milder end of the spectrum (please write to me if you are reading this and are not!) I am forced to come to terms with the fact that my son, who has made great strides in his life, is most likely still lower functioning than most. I am assuming this based on the many stories written by autistic people.  It’s their ability to write so well, and to express themselves so well (emotions, ideas, etc.) that has me perplexed as to just where Matt stands on the spectrum. I have come to the conclusion that he is both high-functioning and moderately / severely autistic. There are two big emotions that have surfaced from this revelation; worry and hope. Worry?  Don’t all parents, especially parents of a special needs child, worry about them constantly?  Isn’t this . . . normal?  Worry has been a part of my soul since I first found out I was pregnant – it goes with parenthood like peas and carrots.  This new round of worry is a bit different.  I worry that society will see so many mildly autistic people that when they come into contact with one at the other end of the spectrum they will view him as less.  I have seen autism student support groups popping up on campuses across the country and marvel at the sheer fact that there are so many college students on the spectrum.  Don’t get me wrong – it’s great they are attending college!  But it makes me realize how far Matt has yet to go, and I am getting old.  Matt is intelligent enough for college, and he wants to be a part of campus activities (all of the fun stuff), but the class work would make him a wreck! Papers to write and tests to take are the road blocks to a college education.  Matt writes – but he’s lazy with the little words and gets phrases backward.  Exams scare him to death – sadly, if he can’t have an “A” he doesn’t want to go to class. Matt is all about perfection.  He has his strengths, like memorizing facts pertaining to a particular subject, but his ability to focus on any given subject really depends on the subject.  Astronomy, volcanism, geology and history would be an easy “A” (if it were not for the papers he would have to write), but English, art appreciation, sociology, chemistry and most other courses would perplex him, or worse yet, frustrate him to the point of tears. It is sinking in, ever so slowly, that Matt is very, very, autistic – to the extent that his future is in question.  Will he hold a job?  No, I don’t think so.  I know I am supposed to get him to that point– but I have come to terms with the simple fact that Matt will probably not work.  If you have suggestions of employment that meet the requirements for Matt to succeed please let me know. The requirements for employment:( ·       Evening shift –Matt doesn’t do mornings. ·       Lots of breaks – and long ones at that. ·       No customer interactions and limited employee interactions. Matt would be frustrated constantly trying to understand other people’s emotions.  One angry person and it would be all over. ·       Non-repetitive –yep, you read that right.  Matt is past the repetitious stage.   Now it would be tedious and boring. He loves taking photographs, art, and adventures to new places.  A nice exotic job – (oh wait,that would require a college education . . . ). ·       He’ll need a mentor– a person to watch and learn from. Someone with patience, a sense of humor, understand the complexities of autism and of course, have a happy-sounding voice. His best chance for employment would be as a photographer for a sports team or magazine, or newspaper.  Getting a job like that requires not only a college education, but also that you know someone in the biz.  I don’t have connections ( –remember, I’m a hermit?). I worry about him getting the opportunity to live on his own.  Not in an institution, not in a half-way house, not even with siblings.  He wants his own place, his own stuff and his own life.  I want what Matt wants.  Getting him there is a long road.  I believe he can – I really do – or we wouldn’t be working on everything from driving to managing money to cooking.  But my goals have changed over the years from hoping he would get a college degree to simply hoping he will have a happy life.  It’s not down-grading, not considering what he has already been able to overcome, but just facing the reality of what he is capable of. I admire those autistic students and wish them well.  Their voices need to be heard loud and clear because there are many autistic individuals just like Matt, those on the opposite side of the spectrum, who really need others to say the things they wish they could but can’t. The public needs to hear them and really listen and to be made aware of the children and adults who have autism and can’t communicate as well; verbal, written, or other. It’s the public that will need to learn how to communicate with the autistic individual, simple awareness is not enough. I read a reply to one young writer in which the comment was something like, “You’re only disabled if you think you are”.  A nice thought, but unfortunately, wrong.  There are people who are disabled that no matter how much you want them to awaken one day and be able to do the things you wish they could, - my God, Matt has tried - but he will always be disabled.  Society must accept these individuals too.  Disabled people (regardless of the disability) are different – not less. The question is, will communities come to see them that way? And yet, after all these days (weeks, months) of reflection and worry I still have hope.  Matt’s progress has been remarkable, to say the least.  For that I am truly thankful (and in constant awe). As a small child Matt was so very autistic that the doctors thought we should consider institutionalizing him right away.  Instead, Matt came home and he learned to break down barriers, participate in activities, communicate in speech and in writing, read, love, laugh, and grow alongside his neurotypical siblings.   He still has difficulties communicating with others and this will be a life-long challenge for him. But I have hope that Matt will realize at least one of his dreams – to live on his own. He’s working diligently toward this goal (we have a 5 year plan and will adjust as needed). What does this mean for others dealing with a child who is diagnosed as autistic and on the severe to moderate end of the spectrum?  It means you keep digging in and pushing forward.  It means although another child may be only mildly autistic and therefore succeeding at every goal, that your child is not less if he can not reach the same goal. After all, those that are more deeply affected have further to go and a more difficult path.  One needs to take the time to reflect on where they have been to truly measure the successes.  Small steps in the world of autism are as monumentally important as the big steps. So no matter which end of the autistic spectrum a person is on, there’s always hope for a better tomorrow.  I’ll probably continue to worry about what that tomorrow will be like, but that’s normal . . . it’s just a parent thing. The important part is to not lose hope along the way.

  • Learning to Drive

    Matt really wants his independence.  Working toward this goal is a huge undertaking.  So far, Matt does his own laundry, cooks his own meals, does pretty good in the area of personal hygiene (but needs work), and keeps his rooms fairly clean.  He is able to grocery shop, keep track of his expenses, and is currently attempting email communication.  That last one is difficult as Matt is just not much of a communicator – he’s autistic. Yet, if Matt is to live an independent life he must be able to get where he needs to go and that means either learning to take a bus, a cab, a subway or drive himself.  We live in a very rural area of Virginia - there are no buses, subways, or cabs. That means Matt needs to learn to drive. When he was a junior in high school he took Driver’s Education and did real well on the written part of the test. Putting him behind the wheel however, was not even considered.  Matt just was not ready for such a big step.  He’s ready now, 7 years later.  Our first consideration was where to take him.  We decided on an old, secluded, and basically abandoned outlet mall to let him practice driving - away from other traffic and distractions.  Teaching Matt to drive is not the same as teaching a regular child to drive but it is similar.  The main difference is how long it takes.  Each step is a lesson in patience and practice.  For those that have taught their normal children to drive I salute you.  Teaching a child to drive – any child – is scary.  Now, take that feeling and multiply it times 10 and you get close to how it is with an autistic child. Matt has a routine. He gets behind the wheel and checks his mirrors.  He fastens his seat belt and turns the key.  He sits a moment in silence, feeling the hum of the motor and psyching himself up for the practice run.  He turns, slowly, deliberately, to look over his shoulder, positioning his right arm to the side and placing his hand on the passenger seat. He puts the car in reverse and backs out of the parking space –at a snails pace.  Once accomplished, a whispered sigh of relief slips out and he faces forward.  We sit a few seconds as he mentally prepares to go again.  Matt puts the car in drive and applies the gas.  We creep along to the end of one small parking lot and he steps on the brake.  My body is jerked forward, then back.  “Good job, Matt” I say as calmly as I can, “Now let’s turn right and go up the hill”. For our first several practices Matt never got above 5 mph.  Then one day as we slowly climbed the hill I encourage him to go faster – all the way up to 20 mph.  His foot pressed down a little bit and slowly we climbed to 20mph.  He looks down to watch the speedometer and forgets to watch where he is going.  I gently remind him to look at the road.  He is startled by the revelation that he forgot to watch where he is going and I could see a frown start to form.  He gets upset with himself for making a mistake, for not being perfect. Each time we go, Matt practices parking, backing up, driving forward, using his turn signals, and by the end of the session he is on top of the world.  Each time Matt parks the car he jumps out to admire his new found skills.  If he is between the lines and pleased with himself, his facial expression is one of triumph and he juts his fists into the air as if to say, “YES!”  If not, his brow deepens and he mutters to himself – no doubt scolding himself for not having done better.   It’s a slow processas he his cautious and nervous and trying desperately to be perfect. I really hadn’t given much thought about his autism other than the slow pace at which we were progressing – that is not until a bee flew in the window.  Matt has always hated flying insects – so much so that he hates going outside for any length of time.  He has a real fear of bees.  No, Matt has never been stung, but his fear is so intense that one would think so. I was abruptly reminded of this fear when the bee appeared. Matt was slowly driving down one of the parking lanes when out of nowhere a bee flew in his window and immediately flew back out again.  In that split second, Matt took both hands off the wheel, covered his face and unbelievably, kept his foot on the gas. Matt had lost all focus.  The car was out of control.  “Matt, BRAKE!” His foot stomped the brake.  “Hands on the wheel!” His hands went to wheel. He stopped the car and sat there visibly shaking.  Matt was surprised at what he had done and continued to shake.  His mind was racing and I could see he was angry at himself.  Matt hates it when he is not perfect.  I could almost hear his thoughts . . ."Loosing control of the car for even a split second is unacceptable . . . and wrong.  How could I make such an awful mistake?"  His expression of disgust told me he was berating himself mentally.  It took a few minutes of gentle conversation to calm him down. “O.K., Matt, we know that you will need to keep your windows rolled up.”  I said. “If you’re in traffic and a bug flies in you have to remain calm or you’ll cause an accident, so to not have that happen you will need to keep your window up, OK?”  That must have sounded reasonable to him as he began to calm down. We continued to practice before calling it quits for the day.  I wanted Matt to end his driving session on a high note – not on the mistake he had made.  I waited until he had parked the car perfectly between the lines, jumped out and thrust his hands in the air in triumph – the sign that he was pleased with himself again.  A few days later when we went on our next practice drive, the first thing Matt did was roll up his window (and simultaneously let out a small “whew”). Teaching Matt to drive is emotionally difficult.  I thought I had thought of all the “what ifs”. What if he hits a deer, or runs off the road, or has a flat tire, or runs out of gas, or pulled over by a police car or his car breaks down.  Unfortunately, I never thought “what if a bug flies in the window”.  Still, with all the hurdles we must get over we have to start somewhere.  This is going to take a very long time –possibly years.  And as much as it scares me, as much as I want to hold him close and protect him, I know I must let him have his chance to be free and independent. I keep in mind every day that each driving session, each small lesson learned is one step closer to the day he becomes independent.  I just hope my nerves can stand it.

  • Light it up blue!

    Autism awareness day begins on the evening of April 1 with the kick-off of the “Light it up blue” campaign and continues through April 2.  The entire month of April is Autism Awareness month, but April 1-2 is a really big deal.  Buildings and homes all over the world will change their light bulbs to blue to bring awareness to the autism spectrum disorders.  This is a world day – a moment when the countries of the world unite on getting the conversation going on an epidemic that has yet to have a known cause or cure.  What is autism?  Who is affected?  What is research finding out?  Does my child have autism?  What can I do? These are some of the questions that the campaign wishes to address.  So let’s get the conversation going. What is autism and who is affected? Autism is a communication and socialization disorder. Communication in a young child may be non-verbal or in disjointed speech patterns that make it difficult for others to gage what it is they are trying to tell you.  Their communication problems greatly restrict their ability to socialize and behaviors develop that seem . . . well, a bit odd.  Many parents feel their child lives in another world – which is a common, but false assumption.  They live in our world but have trouble dealing with the everyday activities that require them to interact.  A lot of these problems can be worked on and many overcome – but it takes time and miles and miles of patience and understanding. How many people are affected? Well, according to the Autism Society, approximately 1% of the population of children (ages 3-17) is on the autism spectrum. That boils down to 1 in 110 children (1 in 70 boys) affected by autism.  Presently, 1 -1.5 millionAmericans live with an autism spectrum disorder. It’s a pretty big deal . . . What is research finding out? There is research and then there is research.  Don’t fall for just any explanation.  Just because you live in a city doesn’t mean your child will be autistic anymore than living near the ocean.  No state is without autism, and for that matter, no district is without autism.  It’s not viral – you can’t catch it.  It’s not the parent’s fault – the old“refrigerator mother” hypothesis has thankfully gone the way of the dodo bird. There is a genetic component – but everything your body does is related to its genetics.  Genes are either turned on or turned off.  When it comes to brain function, again, genes are either turned on or off. One slight little mutation and a gene that was functioning fine last week is now no longer capable of activity. This leads to all sorts of problems in the body.  Is it any wonder that autism has a genetic component?  Basically, in autism the brain, (reason unknown), can not hook up the way it is suppose to.  Neurons, the communicating cells of the brain, are either linking up differently or not at all in the parts of the brain controlling communication and socialization.  Can it be fixed?  Maybe. Yep, I said maybe. The newest research is pointing toward the energy manufacturers of the cell – mitochondria.  Mitochondria make the energy currency used by all the cells in the body to perform their various jobs.  A child’s brain uses most of this currency in its development.  Not enough currency and things slow down or fall apart.  What caused the mutation in the mitochondrial genes? Unfortunately, that’s still a bit complicated.  Environmental factors such as toxins, viruses, inflammation, and allergies are the likely culprits.  Each of these has the ability to alter the function of the mitochondrial genes. Which one caused the autism in your child?  Unfortunately, the research has not found the pathway for each of these stressors and thus no test can be run to determine the exact cause for each individual child. The research though, has been amazing. Scientists all over the world are hunting, searching, testing hypotheses and the answers are slowly coming and with it the hope of treatment and cure.  Some day a child will be diagnosed and given an effective treatment that will degrade the autism and allow the child to develop normally . . . someday. But be careful for now, as false claims are strewn all over the Internet and the unsuspecting parent can find themselves taken by charlatans.  Make sure what you are reading comes from a research institute, medical journal, autism organization or a research university. Does my child haveautism? The following list of autism symptoms can be found on the MayoClinic web page – a very trustworthy source. Social skills Fails to respond to his or her name Has poor eye contact Appears not to hear you at times Resists cuddling and holding Appears unaware of others' feelings Seems to prefer playing alone — retreats into his or her "own world" Language Starts talking later than age 2, and has other developmental delays by 30 months Loses previously acquired ability to say words or sentences Doesn't make eye contact when making requests Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech Can't start a conversation or keep one going May repeat words or phrases verbatim, but doesn't understand how to use them Behavior Performs repetitive movements, such as rocking, spinning or hand-flapping Develops specific routines or rituals Becomes disturbed at the slightest change in routines or rituals Moves constantly May be fascinated by parts of an object, such as the spinning wheels of a toy car May be unusually sensitive to light, sound and touch and yet oblivious to pain My son Matt had them all – every single one.  Matt was diagnosed way back in the 1980s when autism was still considered rare, a 1 in 10,000 chance.  I know that until Matt came along I had never even heard the autism. Figuring out what to do about it after the diagnosis was (and still is) the hardest thing my brain has ever had to contend with. There was no set game plan, no instructions, no assistance, and no one to lean on. Tackling autism and in doing so, watching my son emerge to be a confident, gentle, and intelligent young man, has been the most rewarding experience for me.  Whereas, it has not been an easy road, it has been an enlightening one - one I can look back on now and marvel upon.  Are you on this road? What can I do? So here it is, Autism Awareness Day and you ask yourself, “What can I do?”  If you’re a parent of an autistic child then you most assuredly know just how nice it would be if those around you knew what you were dealing with day-to-day.  Wouldn’t it be nice to know that you have the support of others?  I’m not talking about support groups. I’m talking about the people you see or speak with almost everyday.  Support groups are wonderful; you get to share your concerns with other parents and grandparents dealing with similar issues.  But wouldn’t it be nice if those you know, who do not have an autistic child, understood – really understood –what life is like for you and your child? Your assignment today is to start the conversation.  Quit waiting for others to ask you about autism and instead, start the conversation yourself by going to them. I wish I had.  My family knew Matt was autistic, but they really didn’t understand it much until I started to write.  As they read about my trials and tribulations and Matt’s determination and accomplishments, they finally became aware of what Matt and I had gone through for 20 some years. That lack of understanding all those years was my fault, not theirs.  I never just sat down and talked about it.  Then something wonderful happened - I started to write.  My sister, brothers, mother, and friends were in awe. They are now aware. They now see Matt much differently.  They see him as different –not less. So be the light in the darkness. Do it for your child so that someday people all over the world, in every community, will have compassion, tolerance, and understanding of autism.  Your autistic child will grow up and someday, hopefully, live their adult life on their own. What better way to make sure they are treated respectfully later in their life, than to educate others about autism right now. Take the time this special day, this entire month, (oh heck, let’s just make it all year), to instruct others on how to communicate and interact with the autistic person.  Spread the word. Spread awareness.  Shine a light on autism – and make it blue!

  • Brush Your Teeth

    Brush your teeth. Sounds simple enough, but man - oh - man, it is not.  I took Matt to the dentist yesterday for a check-up.  For the second time in his life Matt has a cavity.  It is again along the gum-line.  The dentist was explaining to me why he needs to brush along his gums – like I didn’t know already.  I know he is concerned about Matt’s brushing habits, but so am I. It’s not like we don’t go over how and why.  The problem is that Matt is autistic and teaching an autistic person has to be creative – to say the least. When Matt was younger the dentist gave him fluoride treatments to help fight cavities.  I brushed his teeth for him while trying to keep his mouth open.  As he got bigger and stronger we had to resort to private, detailed instruction as he brushed.  This supervision paid-off wonderfully as Matt never had a cavity the entire time he was growing up.  I knew someday his luck would eventually run out. Matt has been brushing unsupervised for years.  Although he will brush his teeth when prompted, he doesn’t always brush them without that reminder.  In addition, Matt has moved around a lot between my husband and I.  He stayed with me for a few months while Tom went on work assignments in various states and then we traded and Matt went with Tom.  With all the chaos of going here and there, with routines changing every few months, Matt just got lazy where brushing his teeth was concerned.  Unfortunately, that lazy streak has resulted in cavities – first last year and now this year.  The problem is that a quick brushing doesn’t get along the gum line. By not brushing along the gum line, Matt has developed not only tender, bleeding gums, but cavities. Now the problem is that brushing along the gum line causes them to bleed – so he avoids the area completely.  Unfortunately, Matt also grinds his teeth at night and several teeth are worn away quite a bit. No, Matt will not wear a mouth guard.  This means the teeth he has are very vulnerable. He is at major risk of many more cavities if this behavior (avoiding the gum line) is allowed to take hold.  I need to address the situation immediately. So here’s the plan - Step 1:  Get a new toothbrush!  I need to purchase an oral-B automatic.  The spin brush, while fine for me, is not adequate for an individual who hates the feel of bristles.  He needs one that works faster and in more directions to help him get his teeth really clean and can toughen-up his gums. Step 2: Get a routine down that he and I can stick to.  Matt needs to brush morning and night at the very least.  He needs a new routine - his “once in the morning” routine just isn’t cutting it. Step 3:  Supervise the brushing.  It has been years, but I think Matt needs a bit of supervision for awhile until we can get the gums stronger.  The bleeding gums scare him.  They hurt.  Unfortunately, what I haven’t been able to convince him of is that leaving the gums alone and unbrushed only makes them worse.  So, the only way I can be sure he will brush along the gums is to stand there and encourage him (cheer him on from the sidelines). So there we have it. Brushing his teeth should not be a major task, but alas, if it is then it is.  We have assessed the situation (bleeding gums lead to cavities), come up with a plan of action (the steps I outlined above) and will re-evaluate the plan in six months at the next dental check-up. Unfortunately, prior to that visit we have to go in for the actual filling.  My dentist is a really good guy and I consider him to be a great dentist.  His Novocain needles are rarely felt and he has tremendous patience. I am thankful Matt has him as his dentist.  Matt's experience the last time was very positive and Matt did well even with his curiously numb face. I am keeping my fingers crossed that this filling will go as well. Mostly though, I am hoping Matt will develop a change in his oral care routine to avoid the need for more...

  • Gesture Speaks Volumes

    There are many forms of communication; verbal, facial expressions, written words, and gesture (body language). Each is generally used in conjunction with the others.  We read all this information at once using our senses. Autistic children have difficulty in communication because some areas of communication out-weigh others.  Too much noise.... too much light........ too much skin sensation......  It's this difficulty in taking it all in that makes it difficult to socialize.  Many autistic children do not speak, some do not write, and many do not read facial expressions very well.  To compound the problem, some seem to have a heightened sensory input.  This was Matt. When Matt was very young – between the ages of 2-5 years old – noise hurt, bright lights were avoided, certain smells and tastes were met with disgust.  Matt didn’t speak, he didn’t write, and he avoided eye-contact.  So how did we communicate? I communicated with him using every form of communication I could think of.  I smiled - a lot!  Matt would glance at my face when I spoke.  That quick fleeting glance was long enough to tell him if it was safe to look again. I called this behavior “checking out my mood”.  A smile meant he needn’t flee or squirm to get away.  I used a soft voice . . . a soothing tone just above a whisper.  If he were in my lap I would use the closeness to whisper gently into his ear.  More times than not, Matt would relax into my arms and listen.  These were quiet forms of communication and he received them. Receiving doesn’t necessarily mean he understood, only that he allowed the communication to proceed.  Matt was communicating with me also - I just didn't know it for awhile. A doctor once asked me, “How do you know when he’s thirsty, or hungry, or wants something?”  My reply was, “I just know.”  Of course, I look back on that now and can see I didn’t “just know”, in reality I was reading his gestures.  Matt was training me to communicate. Matt would walk into the kitchen and look up at the cabinet.  He wanted a glass of water.  Matt would pick a video tape and hand it to me.  He wanted to watch that particular video.  Matt would place a toy in the cart in the toy department.  He wanted me to buy it.  It seems so simple.  After all, all kids do it.  But when the child’s major form of communication is gesture, the parents become experts in reading even subtle hints.  If he stood in front of me, then he wanted my attention.  Once he had my attention he would give a hint as to what my next move should be. Arms raised high above his head meant he needed me to put him on my shoulders.  I would take him firmly under his arms and swing him in an arc upward as his legs flew apart to straddle both sides of my neck.  Nothing could harm him up there (it must have also been a great viewpoint). Whenever he was tired of walking or needed to feel safe from what was at ground-level his hands would jut upward and his eyes would dart pleadingly at mine. I could even read his mood by paying attention to the velocity of his hand-flapping.  Fast flapping – scared or excited.  Slow –contentment or interest in what he was doing. In a world void of words, body language was everything.  I was excellent at reading him and he knew exactly which clues I understood.  Basically, I was a great student and he was a great teacher.  What a team! Matt began to draw and to speak at age 5.  Instead of dropping back on the body language he just added his new-found communication skills to his already impressive list of gestures. And although Matt now speaks quite well, can write wonderfully, draw magnificent pictures, and can look directly at a person’s face when talking to them, he still relies heavily on his gestures. He is 25 years old and I still have to force him to voice his thoughts each day. Examples: He steps out to where I can see him and then steps on his empty pop carton.  I look over – as required.  I know this is his gesture for telling me he is out of pop.  “Are you out of pop, or do you have some in your refrigerator?” I ask.  “I am out of pop.” He states matter-of-factly.  “You’ll need to write it on the grocery list, O.K?”  Matt will then write it on the list. Matt stands before me, hat on his head and hands in pockets jiggling his change.  I know he wants to go shopping.  “What’s up, Matt?” I ask.  “Um,” he hesitates and the jingling gets louder and more intense.  His eyes look to the door, then upward as if to show me he is wearing his hat.  “Do you want to go somewhere?” I inquire.  “Are we going to the store?” he asks.  Asking is safer then demanding –Matt never demands anything. I could just jump up and do what ever it is he wants me to do.  I could take that route – it’s easy, I really know Matt very well.  Instead, I keep in mind that Matt needs to communicate verbally as much as possible because that is how the majority of people communicate.  I won’t always be there to read his body language.  He needs to learn to use all the other forms of communication too. A few weekends back we took Matt to Christiansburg for a day of shopping.  Matt had birthday money and gift cards burning a hole in his pocket and needed to spend it.  We had three specific stores on our destination list.  “Which store do you want to go to first?” I asked.  Matt took out his wallet and pulled out a gift card for Barnes and Nobel.  He looked at me.  It was obvious where he wanted to go first.  Instead of acknowledging his gesture I listed the three places and asked him to pick.  He looked at his gift card, back to me and then back to his card. I smiled and waited. The car was quiet.  He looked a bit frustrated.  Why did I not know?  Wasn’t it obvious? “Where to, Matt?” I asked again.  Again his eyes shifted from his card to me and back to his card.  After a few minutes of this game he held his card in his hand and told me, “Barnes and Nobel”, shifting his eyes back to his card then to me.  Matt was trying to train me.....again ( I obviously must not understand that the card in his hand was for Barnes and Nobel - how stupid could I be?)  Instead of acting dumb and playing along I just came right out and told him that he needed to say it out loud.  I let him know that, yes, I knew what store the card was for, and that I understood, but that daddy was the one driving and he couldn’t see what Matt was doing. Basically, Matt had to say it out loud so that daddy knew where he wanted to go.  This seemed to be an acceptable explanation as he replied, “Oh, O.K.” Matt knows how to train others to read him.  He is very good at gesture - even people that don’t see him very often can usually understand his gestures.  But... speech is important too.  Matt and I compromise on communication; I want Matt to use his speech, Matt wants to rely on his art of gesture.  Of course he does – it was the very first way we “spoke” to one another, the communication method we forged in the early years of his life, why wouldn't he want to hang on to it?  It's difficult to give that up.  So, it may be a bit of tug-o-war but I am hopeful that we will eventually meet in the middle and that Matt and I will eventually feel equally comfortable using both.

  • Autism - It's Impossible to Predict

    When holding my newborn baby in my arms it was impossible to predict his future.  As a mother I immediately glanced ahead in my minds eye trying to imagine his life and who he would become.  Would he be an artist? A doctor? An astronaut? President?  It’s funny how I thought about artist first.  I am an artist – an unfulfilled dream of actually working as an artist has always been my biggest regret.  I come from poor people and the artist stereotype is one of poverty until, if ever, you get your first big break. I couldn’t take that route. I had to have a stable paycheck. I guess I wanted my son to be who I couldn’t be - an artist. Imagine my surprise and giddiness when at the tender age of 18 months Matt was holding objects at arms length and viewing these objects from all angles.  I saw an artist.  It was not long afterward that Matt was diagnosed as autistic.  Still, even though such behavior is a classic autistic trait, I couldn’t help but see the artist just beneath the surface.  Matt was only 3 years old when I taught him how to trace a picture.  His love for drawing was born that day.  His hands first slowly and purposeful tracing each line soon began to fly across the page with each new attempt.  It wasn’t long before he was drawing freehand. Matt turned out to be a very gifted artist. It’s impossible to predict which child will be autistic and which child will not.  Parents today must consider this possibility when having children as the chances of autism have skyrocketed to a 1:110 chance overall, and 1:70 chance if the baby is a boy.  I didn’t think of such things when I was pregnant – autism was still relatively rare at 1:10,000. No one even knew what an autistic child was capable of learning. If the child is autistic, then it is also impossible to predict to what degree of autism they will have. The autism spectrum is enormous – from very mild behaviors to severe, and no 2 autistic children are alike.  This further complicates things as parents can’t even compare progress or success of their child to other autistic children.  I never knew another autistic child as Matt was growing up. Matt was diagnosed as moderate to severe.  The prognosis set forth was poor.  The doctors suggested Matt would be too much for me to bear. It is obvious to me now that the doctors simply didn’t know much about autism back then. Having never even heard of autism also meant that it never occurred to me to compare him to other autistic children – for which I am thankful. I had no preconceived ideas. What I did do was to compare him to my other neurotypical children.  What could Matt do that they could do?  What could Matt learn that they had learned? This was the bar that I set for my son.  A high, sometimes an impossibly high, bar of success was set in my mind.  I pushed for each minor step.  Simple things, like speaking, writing, and learning basic math and science in school were one set of goals.  Learning to go to thebathroom, take a bath, get dressed, brush his teeth, and make his bed, were a whole additional set of goals. All of them seemed like awfully high hurdles back then, but he learned them.  Tiny successes, like the day he took his own bath without me, were reasons for celebration and sometimes tears.  After all, the professionals of the time had predicted he would never do any of these things.  I trained myself to be extremely observant so I would not miss out on the high of seeing something amazing.  Over the years I became a behavior- observation junky (I remain one to this day). Imagine my high as I watched my autistic son walk across the stage at graduation, with honor cords around his neck, and a proud smile on his face.  I remember wondering, “Would there ever again be such an amazing parental high?” To answer that question, yes.  The amazing changes just keep coming! It’s also impossible to predict how autism will affect their life. Matt is 25 years old and I can still not predict what his life will be like even 5 years from now.  I have set goals for him – like driving and living on his own – but these are still in the planning stages.  What Matt will accept for himself is not something I can simply force upon him. He wants to drive a small truck and he wants his own apartment and this is the driving force for the goals I set – Matt really wants these things.  Will he drive?  Will he live on his own?  I can’t predict.  I don’t even want to speculate – it might ruin the next amazing high. All in all, autism is impossible to predict.  You never know if a child will be autistic, or if autistic, to what degree.  You never know if your autistic child will be able to achieve the smallest of goals, or what their life will be like just a few years down the road.  Parents of an autistic child live in the moment and reach for the future in a very different way than parents of the normal, neurotypical child.  They set their expectations differently, not lower by no means, but rather at a slower pace.  Each day brings the possibility of seeing something amazing, of knowing your child in a very different way.  Matt fulfills a part of me I never knew existed until he entered my life.  The very least I can do is to be his tour guide to the possibilities that lay before him.  His wonderful accomplishments thus far tend to enhance the brightness of his future. Yet, when or how he gets there is still impossible to predict.

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