A Journey of Inches
Understanding and Facilitating the High-Functioning Atypically Autistic Child
Understanding and Facilitating the High-Functioning Atypically Autistic Child
By Alex Cullison
Editor's note: The opinions expressed herein are those of the author exclusively.
My son, Alexander Paul Cullison, is a teenager and is a senior at Chantilly High School here in Fairfax, VA. He is high-functioning atypically autistic. You wouldn't know it by looking at him. He looks like any average teen. He goes to classes that facilitate those with learning challenges. Alexander doesn't have many friends, although he would like them. He just doesn't understand how to make and maintain friendships. He eats alone. You wonder what he is thinking about. He walks home from school alone, looking down at the ground, sometimes stopping to pick up a discovered “treasure” (some small discarded trinket). And yet, if you take a few minutes to cultivate a conversation with him, you will find Alexander to be an interesting conversationalist. He is knowledgeable and well traveled. But I am getting ahead of myself.
My wife Diana gave birth to Alexander in May of 1989; a fairly normal childbirth by all respects. He was healthy and a good baby. He has two half-sisters, but they have always lived very far away and have not participated much in his life.
One thing the reader should know here. Autism, whether it is a more conventional form of autism or something more high functioning, typically reveals the condition from the onset of birth or later around three years old (latent autism). Why the delayed symptoms? Who knows?
Alexander was perfectly normal (not an expression we like to use) until he was about three. When other boys were playing with toy trucks, using their imaginations, he just couldn't get into it. He started repeating himself (echolalia) and referring to himself in the third person. He stopped making eye contact. He started lining up small toys in long strings, and he was not sociable with other kids.
This was a period of time (early 1990's) when the field of knowledge for autism, ADHD, and Asperger's Syndrome was still being defined and clarified by academics, psychologists, psychiatrists, neurologists, school counselors, and a host of other concerned parties. Diagnoses were not consistent. When people thought of autism, they had the stereotypical image of Dustin Hoffman the Rain Man.
We, like most parents, thought our child was perfect, albeit, eccentric. We didn't let his idiosyncrasies cloud our opinion. We would have loved him if he had gills and fins.
Our first clue that there was a problem was when our son went to daycare at the home of a nice lady who had a background in developmental behavior. Alexander had been going to her with about a dozen other children, for about 3 months, when she felt compelled to share her observations with us.
She told us that he was tuning-out, in terms of paying attention, not making eye contact, not playing with other children, not using his imagination with age appropriate toys, and would wander-off from where he was supposed to be outside. She suspected some developmental challenge and recommended that we take our son to “Child Find.”
Child Find is an excellent program offered by Fairfax County Public Schools for preschoolers, that tests children for possible developmental challenges. Alexander was about 4 years old when he undertook the extensive examination. I was there during the entire testing procedure. It was conducted professionally and objectively.
When Child Find had finished its testing and compiled the results, we were called in for a consultation. With all the warmth and sensitivity of an IRS audit, we were informed our son was retarded. That his prospects weren't good. That he would be remanded to the Special Education department of the school system. Well, words can't describe the psychological paralysis one experiences at that moment. At that point in time, like a meteor landing on your house, the whole world changes. Not a bump or a detour, but a full-fledged apocalypse. You feel like you have been kicked in the stomach. You try to catch your breath. The room and the people look surrealistic. As Diana and I searched for a psychological anchor, we could see our son through the office glass in the next room, sitting on the floor and happily playing with some blocks.
There are many challenges parents face at this point. Trying not to look at or treat your child differently is certainly a priority. Getting to know more about developmental disorders is important. Learning about how both schools and parents handle special needs kids within the educational system is crucial. Getting peer support, identifying resources, and learning a whole new lexicon of acronyms is another concern. Dealing with the issue of “labeling” becomes increasingly more relevant. You review your Will, wondering what would happen to your child should both of us parents die together in some accident. Who would love and take care of him under these new conditions?
I have always been of the mindset that whatever I need to know, I research. So I immersed myself in the body of knowledge available to me at that point in time. I read research papers, studied articles and books, audited college classes, and spoke to just about any authoritative person I could find that would share their knowledge with me. I was inundated with information and came to the conclusion that the diagnosis of these kinds of disorders represented an academic dynamic; a field that was struggling to create order by establishing some consistent standards based on criteria founded by meaningful/relevant research and experience.
One thing became abundantly clear. Early intervention and support was crucial. To get the services we needed for our son, we had to allow him to be labeled “autistic” and resign ourselves to the reality that he was going to be a “special ed” student.
How is autism diagnosed? For a child, there are some fundamental and easily identifiable characteristics/behaviors, such as:
How many of the above behaviors a child has along with the degree a child demonstrates these behaviors will dictate if a child is autistic. To make this more complicated, not every autistic child will share the same behaviors. Furthermore, some behaviors may become extinct, only to be replaced by new behaviors.
We took our son to a pediatric neurologist and a psychologist. Basically the neurologist ruled out other conditions that could contribute to his behavior. The psychologist suggested drug therapy, prescribing Ritalin, but Alexander reacted negatively to the treatment. He was also evaluated at the Kennedy Krieger Institute in Baltimore. They confirmed what we already knew.
The school system conducted an eligibility hearing to identify if Alexander met their criteria for special needs assistance. Then the parents have to plan a learning program with school staff, called an IEP meeting. At this Individualized Educational Program meeting, you, in collaboration with your child's teachers and counselors, design a curriculum that best facilitates the interests and needs of your child. You are your child's best advocate. Become familiar and competent with the process.
Alexander initially demonstrated many of the typical autistic behaviors. Enough of them, so that there was no question in my mind that he was autistic. We were fortunate that as some of the behaviors became extinct, they were not being replaced by new autistic behaviors. We as parents didn't really have anything to compare to, a reference point for lack of better term, to contrast our son's degree of autism as compared to others. That is, until he started first grade.
Alexander's first grade class encompassed all of the autistic first graders at his elementary school. You didn't have to observe this class long to realize that virtually all of the other children were seriously more impaired than Alexander. He would sit and try to read or play with educational toys, only to be distracted or disturbed by the other more disabled children. He became increasingly more confused and frustrated. He couldn't determine what was acceptable student behavior. Diana and I called for a meeting with school officials. We expressed our concern about the class composition and the “one size fits all” approach to instruction. It took a great deal of letter writing and lobbying to negotiate a classroom environment more conducive to the needs and abilities of our son and others like him. It was in this new classroom environment that we saw him grow, learn, and develop the skills to deal with his disability.
Being ritualistic is one of the behaviors of autism. We never allowed Alexander to become ritualistic. We would rearrange the furniture in his room and change his drawers around. We kept him very mentally active. Reading was an important part of his day. We also traveled on vacations. We changed our routines. Replaced toys and books frequently. Enrolled him in gymnastics, swimming classes, piano lessons, and a host of other activities to keep him from settling into any ritualistic routine. This strategy worked exceptionally well with Alexander. He is a pleasure to travel with. He is adventurous. And he loves to read and research new things.
There was a period of time when Alexander was very disassociated with his feelings. This was when he was about 7 years old. He would hurt himself, like falling off a bicycle, and not know why he was crying. He had absolutely no sense of empathy. He wasn't in touch at all with his own feelings.
We are blessed that Alexander is a warm and loving child. When he was a toddler, he would sit in my lap as I read to him. He would hold my hand or cuddle with me on the sofa as we watched a movie and ate popcorn. At the risk of appearing callused, this enabled us to love our child more easily. Some autistic kids have a strong aversion to being touched, making it harder for parents to make or feel a bond.
As I said earlier, we have tried many things to help Alexander, such as diet, vitamin therapy, Ritalin, etc. One approach we took was Secretin. Synthetic secretin is sometimes used in conducting tests of the digestive system. Resources about using secretin-like substances to treat autism appeared in many places in the mid 1990's, particularly the popular press. Most of the interest in this followed the observations by Victoria and Gary Beck about their son Parker's improvement after taking secretin. People should be cautious about seeking immediate treatment, as the data are discouraging and the use of secretin to treat autism is still "off label" (i.e., not a recommended medical practice). Nevertheless, in our crusade to make sure we left no stone unturned, with respect to our son, he underwent three secretin infusions. This wasn't a panacea or a silver bullet. Alexander did develop a sense of imagination and empathy. He also became of his own feelings and reaction to pain became more immediate. I will never forget, it was a couple months after the treatment, that Alexander was taking a bath. He slid all the way down in the bathtub and stuck his hand up and out the side of the tube, like a hand puppet. He said, “look dad, I am a submarine!” This was the first time I can recall him using his imagination. I almost cried.
When Alexander was to enter Middle School, we had one of the most difficult challenges that a parent can face. Unlike elementary school, he would be noticeably labeled and characterized as a “Special Ed” student. This mandated that we explain to him before he started 7th grade why he was going to different classes. We had to tell our son he was autistic. This is an experience that my wife and I would not want to endure again. Words can't describe how hard this was. You don't want to make your child feel that he is defective or a freak. You try hard to desensitize and marginalize the issue. To put it in a perspective that is factual and realistic but not demoralizing. To make matters worse, we also realized that up to this point, we hadn't told him there wasn't a Santa Claus.
Alexander's elementary school was something out of a Norman Rockwell painting. Not too crowded, nurturing, reasonably quiet and administratively structured. He then was thrust into a huge overcrowded school, lockers, different rooms for different classes, and enough estrogen and testosterone to power a small country. One very nice counselor pasted little different color paw prints on the walls (almost unnoticeable to anyone else) that guided Alexander to his different classes.
Alexander was starting to show some academic strengths and weaknesses. This represented a conundrum for us in negotiating his class schedules. There was an instinctive inclination to direct his studies into the subject areas where he excels. The challenge is to concentrate on areas where he is the weakest. Not easy when you want your child to get good grades, but a defensible tradeoff when it comes to the big academic picture.
The good news is Alexander survived Middle School. It was heartbreaking to find out that they did not tell parents or the special education kids that they had a graduation ceremony for the regular students. No rite of passage here.
Carefully planning an IEP for High School is very important. This is when just about everything you do starts to make a big difference in the outcome of your child's success in and after High School. His high school offers regular classes, special classes for those students that need more assistance, and an Academy for more challenged kids. Alexander has, for the most part, attended the smaller classes for those with some learning disabilities. Keep in mind, at these IEP meetings, you don't necessarily get what your child wants or needs, rather, you get what you negotiate. Diana and I have been blessed with caring, knowledgeable, and facilitative counselors and teachers at his high school. We are fortunate that Alexander works hard at his studies and is always willing to stay after school for special assistance. His grades are average to slightly above average. He likes history and English and excels in both.
Alexander is a loner. Though the fact he doesn't realize he is a loner, is kind of a blessing. He eats by himself most of the time. He doesn't have any real friends or buddies. We don't get knocks at our door, asking if Alexander can “come out to play.” He hasn't been out on a date yet. He wants normal relationships and is clueless on how to cultivate or maintain typical peer relationships.
We try to dress Alexander in “cool” clothes. He has a popular hair cut. He is blessed with good teeth and a clear complexion. He is tall, athletic, and handsome. And yet, he doesn't swagger his size or physique as he walks down the halls of his school.
We all remember Rain Man and the special savant gifts that Dustin Hoffman demonstrated. Alexander also has some very unusual talents. He can find four-leaf clovers by the handfuls in just a few minutes (only one clover in 14,000 is four-leaf). He can find a single street on a huge road map in seconds. He is almost impervious to the cold, and thinks nothing of swimming in the middle of winter. His vocabulary is spectacular. He can spell most any word. He beats the toughest video games. He likes to act. Yes, what would seem like a major contradiction, Alexander has taken acting classes in high school and gotten “A's.” He has had parts in school plays. He sometimes thinks he would like to be an actor. The thing is, as all parents of autistic kids know, it isn't the superhuman savant powers that demonstrate improvement, rather the normal age-appropriate behavior that all other parents take for granted.
Alexander's high school was within walking distance of our home, but for his freshman and sophomore years he took the bus. He has a difficult time remembering to look both ways on a street before he crosses it. In his junior year, we bought him a cell phone. He now can, if he wants, stay after school to play chess, cards, watch anime, and study. He calls to let us know. He is responsible and safe. He sometimes walks our neighborhood for hours, always with his phone on so we can call him.
Alexander is soon to be a senior in high school. He has worked very hard to get a standard 22-credit diploma. We promised him a trip to Japan if he accomplished this goal.
He will. Some teachers and counselors have questioned if Alexander is “still autistic” based on his current condition and/or questioned the original diagnosis. It is very tempting to relieve him and ourselves of the label “autistic” but that would not be fair, accurate, or of utility.
Alexander is autistic. I saw the tests. I witnessed the behaviors. There was no question at the time. Acceptance and early intervention has made a big difference. The Fairfax County Public School system has an outstanding program and is dedicated to helping special needs children. They are willing to provide the resources needed to help your child be successful. Alexander's teachers have been outstanding. You couldn't ask for more dedicated and committed teachers. He still gets emails from his earlier teachers, wanting to know how he is doing, what he is doing, and asking for pictures. We have been blessed with a county school system that really takes an interest in education and students with special needs. The key to success is early intervention.
Alexander has adapted to his environments. Adjusted. Adopted coping skills. He has tried to transition, conform, emulate, and become like the rest of us. At the deepest most fundamental level, he might not know why he has to say hello to his bus driver every morning; he simply knows it is expected of him. He cried when a girl he really liked refused to dance with him at a school function, but he really didn't know why.
Alexander is not sure what he wants to be when he gets older. He struggles every day to be like regular kids, to do well at school, and have a normal life. He recently learned that if he wants other kids to play video games with him, he has to actually let them play too.
Alexander's high school had its Home Coming dance. Alexander asked a very
popular girl to the dance, but she declined. She said she was going to the dance with her boyfriend. Alexander, all on his own, bought a ticket to the dance. He was going “stag.” Alexander got dressed into a very handsome suit and went on his own. He stayed for about two hours. Alexander asked a girl to dance that he didn't know. They danced a couple of dances together. He walked around, explored, and shared in the experience of his senior Home Coming dance. When he came home, he was very positive about the experience. He even said hello to the girl he had originally asked to the dance. Much to the dismay of her date, he took their picture with his cell phone camera!
Alexander is learning to drive a car. He has his Learners Permit. Driving a car is very stressful and challenging for him. Autism floods the person with sensory stimulation. Being able to discriminate what to process and what to ignore is very difficult for them. Driving a car represents the ultimate challenge for the autistic driver. When driving, you routinely change your attention from one perspective to another. You look at the road, glance at your speedometer and mirrors. When changing lanes, you have to take your eyes off the road momentarily to check to see if it's safe to move over. Adding to this cacophony of sensory input, the behavior of other drivers, the wipers, weather, the need to focus on navigation,
passengers, the radio (no way!), and a host of other distractions, all adds up to a very challenging scenario for the autistic driver.
During Alexander's junior year, Alexander was given a real Chantilly High School Athletic letter and a pin for his participation in Special Olympics basketball. Even though it is the same letter that other high school athletes are given, he preferred to have it displayed in a shadow box rather than wear it on a jacket. He seemed to sense that it was something somewhat marginalized from the conventional recognition. In his second semester of his senior year (February 2007), I received a letter from my son's high school. With some anxiety and apprehension, I open the formal correspondence. Much to my surprise, Alexander had made the HONOR ROLL! It was an official notification from the principal that he had been awarded this academic achievement. We were so very proud of him!
In June, 2007, Alexander went to the senior prom. He had a lovely date, whom was a friend and a fellow anime enthusiast. They had a limo take them to a Japanese restaurant and to the prom. He looked very handsome in his tux! Alexander had a great time. He also received his high school year book. Diana and I were shocked to find how many of his fellow classmates signed his book with nice sentiments. We placed a personal ad for Alexander in the back of the yearbook:
Later in June, 2007, Alexander graduated from High School. He received a regular 22 credit diploma like the other students. He wore his cap and gown at the graduation held at George Mason College's Patriot Center. Alexander graduated with a 3.3 grade point average.
Alexander is now going to Woodrow Wilson Rehabilitation Center in Fishersville, VA. He is learning life skills transition, records and database management, and hopefully getting his driver's license. He knows if anything happened to Diana and me, he would need the skills to manage the house, cars, and all that we would leave him. He also recognizes that his own personal growth depends on his being able to live independently. He is trying hard to be positive about the training.
For 18 years I have been going into my son's room at night, I sit on his bed, and together we say prayers. We talk. I ask him how his day went. How does he feel? Everything okay at school? Was anyone mean to him? What would he like to do on the weekend? I know that time is running out, that one night in the near future, I will go into my son's room and it will be empty. Just some of his “treasures” on the dresser where he last left them. He will be off to school, the Army, or living in his own place, putting together a life of his own. I will sit on his bed, and wish he were there to talk to me. I will say prayers, just like he was there anyway.
A journey of inches.
My son, Alexander Paul Cullison, is a teenager and is a senior at Chantilly High School here in Fairfax, VA. He is high-functioning atypically autistic. You wouldn't know it by looking at him. He looks like any average teen. He goes to classes that facilitate those with learning challenges. Alexander doesn't have many friends, although he would like them. He just doesn't understand how to make and maintain friendships. He eats alone. You wonder what he is thinking about. He walks home from school alone, looking down at the ground, sometimes stopping to pick up a discovered “treasure” (some small discarded trinket). And yet, if you take a few minutes to cultivate a conversation with him, you will find Alexander to be an interesting conversationalist. He is knowledgeable and well traveled. But I am getting ahead of myself.
My wife Diana gave birth to Alexander in May of 1989; a fairly normal childbirth by all respects. He was healthy and a good baby. He has two half-sisters, but they have always lived very far away and have not participated much in his life.
One thing the reader should know here. Autism, whether it is a more conventional form of autism or something more high functioning, typically reveals the condition from the onset of birth or later around three years old (latent autism). Why the delayed symptoms? Who knows?
Alexander was perfectly normal (not an expression we like to use) until he was about three. When other boys were playing with toy trucks, using their imaginations, he just couldn't get into it. He started repeating himself (echolalia) and referring to himself in the third person. He stopped making eye contact. He started lining up small toys in long strings, and he was not sociable with other kids.
This was a period of time (early 1990's) when the field of knowledge for autism, ADHD, and Asperger's Syndrome was still being defined and clarified by academics, psychologists, psychiatrists, neurologists, school counselors, and a host of other concerned parties. Diagnoses were not consistent. When people thought of autism, they had the stereotypical image of Dustin Hoffman the Rain Man.
We, like most parents, thought our child was perfect, albeit, eccentric. We didn't let his idiosyncrasies cloud our opinion. We would have loved him if he had gills and fins.
Our first clue that there was a problem was when our son went to daycare at the home of a nice lady who had a background in developmental behavior. Alexander had been going to her with about a dozen other children, for about 3 months, when she felt compelled to share her observations with us.
She told us that he was tuning-out, in terms of paying attention, not making eye contact, not playing with other children, not using his imagination with age appropriate toys, and would wander-off from where he was supposed to be outside. She suspected some developmental challenge and recommended that we take our son to “Child Find.”
Child Find is an excellent program offered by Fairfax County Public Schools for preschoolers, that tests children for possible developmental challenges. Alexander was about 4 years old when he undertook the extensive examination. I was there during the entire testing procedure. It was conducted professionally and objectively.
When Child Find had finished its testing and compiled the results, we were called in for a consultation. With all the warmth and sensitivity of an IRS audit, we were informed our son was retarded. That his prospects weren't good. That he would be remanded to the Special Education department of the school system. Well, words can't describe the psychological paralysis one experiences at that moment. At that point in time, like a meteor landing on your house, the whole world changes. Not a bump or a detour, but a full-fledged apocalypse. You feel like you have been kicked in the stomach. You try to catch your breath. The room and the people look surrealistic. As Diana and I searched for a psychological anchor, we could see our son through the office glass in the next room, sitting on the floor and happily playing with some blocks.
There are many challenges parents face at this point. Trying not to look at or treat your child differently is certainly a priority. Getting to know more about developmental disorders is important. Learning about how both schools and parents handle special needs kids within the educational system is crucial. Getting peer support, identifying resources, and learning a whole new lexicon of acronyms is another concern. Dealing with the issue of “labeling” becomes increasingly more relevant. You review your Will, wondering what would happen to your child should both of us parents die together in some accident. Who would love and take care of him under these new conditions?
I have always been of the mindset that whatever I need to know, I research. So I immersed myself in the body of knowledge available to me at that point in time. I read research papers, studied articles and books, audited college classes, and spoke to just about any authoritative person I could find that would share their knowledge with me. I was inundated with information and came to the conclusion that the diagnosis of these kinds of disorders represented an academic dynamic; a field that was struggling to create order by establishing some consistent standards based on criteria founded by meaningful/relevant research and experience.
One thing became abundantly clear. Early intervention and support was crucial. To get the services we needed for our son, we had to allow him to be labeled “autistic” and resign ourselves to the reality that he was going to be a “special ed” student.
How is autism diagnosed? For a child, there are some fundamental and easily identifiable characteristics/behaviors, such as:
- impaired ability to make friends with peers
- impaired ability to initiate or sustain a conversation with others
- absence or impairment of imaginative and social play
- stereotyped, repetitive, or unusual use of language
- restricted patterns of interest that are abnormal in intensity or focus
- preoccupation with certain objects or subjects
- inflexible adherence to specific routines or rituals
How many of the above behaviors a child has along with the degree a child demonstrates these behaviors will dictate if a child is autistic. To make this more complicated, not every autistic child will share the same behaviors. Furthermore, some behaviors may become extinct, only to be replaced by new behaviors.
We took our son to a pediatric neurologist and a psychologist. Basically the neurologist ruled out other conditions that could contribute to his behavior. The psychologist suggested drug therapy, prescribing Ritalin, but Alexander reacted negatively to the treatment. He was also evaluated at the Kennedy Krieger Institute in Baltimore. They confirmed what we already knew.
The school system conducted an eligibility hearing to identify if Alexander met their criteria for special needs assistance. Then the parents have to plan a learning program with school staff, called an IEP meeting. At this Individualized Educational Program meeting, you, in collaboration with your child's teachers and counselors, design a curriculum that best facilitates the interests and needs of your child. You are your child's best advocate. Become familiar and competent with the process.
Alexander initially demonstrated many of the typical autistic behaviors. Enough of them, so that there was no question in my mind that he was autistic. We were fortunate that as some of the behaviors became extinct, they were not being replaced by new autistic behaviors. We as parents didn't really have anything to compare to, a reference point for lack of better term, to contrast our son's degree of autism as compared to others. That is, until he started first grade.
Alexander's first grade class encompassed all of the autistic first graders at his elementary school. You didn't have to observe this class long to realize that virtually all of the other children were seriously more impaired than Alexander. He would sit and try to read or play with educational toys, only to be distracted or disturbed by the other more disabled children. He became increasingly more confused and frustrated. He couldn't determine what was acceptable student behavior. Diana and I called for a meeting with school officials. We expressed our concern about the class composition and the “one size fits all” approach to instruction. It took a great deal of letter writing and lobbying to negotiate a classroom environment more conducive to the needs and abilities of our son and others like him. It was in this new classroom environment that we saw him grow, learn, and develop the skills to deal with his disability.
Being ritualistic is one of the behaviors of autism. We never allowed Alexander to become ritualistic. We would rearrange the furniture in his room and change his drawers around. We kept him very mentally active. Reading was an important part of his day. We also traveled on vacations. We changed our routines. Replaced toys and books frequently. Enrolled him in gymnastics, swimming classes, piano lessons, and a host of other activities to keep him from settling into any ritualistic routine. This strategy worked exceptionally well with Alexander. He is a pleasure to travel with. He is adventurous. And he loves to read and research new things.
There was a period of time when Alexander was very disassociated with his feelings. This was when he was about 7 years old. He would hurt himself, like falling off a bicycle, and not know why he was crying. He had absolutely no sense of empathy. He wasn't in touch at all with his own feelings.
We are blessed that Alexander is a warm and loving child. When he was a toddler, he would sit in my lap as I read to him. He would hold my hand or cuddle with me on the sofa as we watched a movie and ate popcorn. At the risk of appearing callused, this enabled us to love our child more easily. Some autistic kids have a strong aversion to being touched, making it harder for parents to make or feel a bond.
As I said earlier, we have tried many things to help Alexander, such as diet, vitamin therapy, Ritalin, etc. One approach we took was Secretin. Synthetic secretin is sometimes used in conducting tests of the digestive system. Resources about using secretin-like substances to treat autism appeared in many places in the mid 1990's, particularly the popular press. Most of the interest in this followed the observations by Victoria and Gary Beck about their son Parker's improvement after taking secretin. People should be cautious about seeking immediate treatment, as the data are discouraging and the use of secretin to treat autism is still "off label" (i.e., not a recommended medical practice). Nevertheless, in our crusade to make sure we left no stone unturned, with respect to our son, he underwent three secretin infusions. This wasn't a panacea or a silver bullet. Alexander did develop a sense of imagination and empathy. He also became of his own feelings and reaction to pain became more immediate. I will never forget, it was a couple months after the treatment, that Alexander was taking a bath. He slid all the way down in the bathtub and stuck his hand up and out the side of the tube, like a hand puppet. He said, “look dad, I am a submarine!” This was the first time I can recall him using his imagination. I almost cried.
When Alexander was to enter Middle School, we had one of the most difficult challenges that a parent can face. Unlike elementary school, he would be noticeably labeled and characterized as a “Special Ed” student. This mandated that we explain to him before he started 7th grade why he was going to different classes. We had to tell our son he was autistic. This is an experience that my wife and I would not want to endure again. Words can't describe how hard this was. You don't want to make your child feel that he is defective or a freak. You try hard to desensitize and marginalize the issue. To put it in a perspective that is factual and realistic but not demoralizing. To make matters worse, we also realized that up to this point, we hadn't told him there wasn't a Santa Claus.
Alexander's elementary school was something out of a Norman Rockwell painting. Not too crowded, nurturing, reasonably quiet and administratively structured. He then was thrust into a huge overcrowded school, lockers, different rooms for different classes, and enough estrogen and testosterone to power a small country. One very nice counselor pasted little different color paw prints on the walls (almost unnoticeable to anyone else) that guided Alexander to his different classes.
Alexander was starting to show some academic strengths and weaknesses. This represented a conundrum for us in negotiating his class schedules. There was an instinctive inclination to direct his studies into the subject areas where he excels. The challenge is to concentrate on areas where he is the weakest. Not easy when you want your child to get good grades, but a defensible tradeoff when it comes to the big academic picture.
The good news is Alexander survived Middle School. It was heartbreaking to find out that they did not tell parents or the special education kids that they had a graduation ceremony for the regular students. No rite of passage here.
Carefully planning an IEP for High School is very important. This is when just about everything you do starts to make a big difference in the outcome of your child's success in and after High School. His high school offers regular classes, special classes for those students that need more assistance, and an Academy for more challenged kids. Alexander has, for the most part, attended the smaller classes for those with some learning disabilities. Keep in mind, at these IEP meetings, you don't necessarily get what your child wants or needs, rather, you get what you negotiate. Diana and I have been blessed with caring, knowledgeable, and facilitative counselors and teachers at his high school. We are fortunate that Alexander works hard at his studies and is always willing to stay after school for special assistance. His grades are average to slightly above average. He likes history and English and excels in both.
Alexander is a loner. Though the fact he doesn't realize he is a loner, is kind of a blessing. He eats by himself most of the time. He doesn't have any real friends or buddies. We don't get knocks at our door, asking if Alexander can “come out to play.” He hasn't been out on a date yet. He wants normal relationships and is clueless on how to cultivate or maintain typical peer relationships.
We try to dress Alexander in “cool” clothes. He has a popular hair cut. He is blessed with good teeth and a clear complexion. He is tall, athletic, and handsome. And yet, he doesn't swagger his size or physique as he walks down the halls of his school.
We all remember Rain Man and the special savant gifts that Dustin Hoffman demonstrated. Alexander also has some very unusual talents. He can find four-leaf clovers by the handfuls in just a few minutes (only one clover in 14,000 is four-leaf). He can find a single street on a huge road map in seconds. He is almost impervious to the cold, and thinks nothing of swimming in the middle of winter. His vocabulary is spectacular. He can spell most any word. He beats the toughest video games. He likes to act. Yes, what would seem like a major contradiction, Alexander has taken acting classes in high school and gotten “A's.” He has had parts in school plays. He sometimes thinks he would like to be an actor. The thing is, as all parents of autistic kids know, it isn't the superhuman savant powers that demonstrate improvement, rather the normal age-appropriate behavior that all other parents take for granted.
Alexander's high school was within walking distance of our home, but for his freshman and sophomore years he took the bus. He has a difficult time remembering to look both ways on a street before he crosses it. In his junior year, we bought him a cell phone. He now can, if he wants, stay after school to play chess, cards, watch anime, and study. He calls to let us know. He is responsible and safe. He sometimes walks our neighborhood for hours, always with his phone on so we can call him.
Alexander is soon to be a senior in high school. He has worked very hard to get a standard 22-credit diploma. We promised him a trip to Japan if he accomplished this goal.
He will. Some teachers and counselors have questioned if Alexander is “still autistic” based on his current condition and/or questioned the original diagnosis. It is very tempting to relieve him and ourselves of the label “autistic” but that would not be fair, accurate, or of utility.
Alexander is autistic. I saw the tests. I witnessed the behaviors. There was no question at the time. Acceptance and early intervention has made a big difference. The Fairfax County Public School system has an outstanding program and is dedicated to helping special needs children. They are willing to provide the resources needed to help your child be successful. Alexander's teachers have been outstanding. You couldn't ask for more dedicated and committed teachers. He still gets emails from his earlier teachers, wanting to know how he is doing, what he is doing, and asking for pictures. We have been blessed with a county school system that really takes an interest in education and students with special needs. The key to success is early intervention.
Alexander has adapted to his environments. Adjusted. Adopted coping skills. He has tried to transition, conform, emulate, and become like the rest of us. At the deepest most fundamental level, he might not know why he has to say hello to his bus driver every morning; he simply knows it is expected of him. He cried when a girl he really liked refused to dance with him at a school function, but he really didn't know why.
Alexander is not sure what he wants to be when he gets older. He struggles every day to be like regular kids, to do well at school, and have a normal life. He recently learned that if he wants other kids to play video games with him, he has to actually let them play too.
Alexander's high school had its Home Coming dance. Alexander asked a very
popular girl to the dance, but she declined. She said she was going to the dance with her boyfriend. Alexander, all on his own, bought a ticket to the dance. He was going “stag.” Alexander got dressed into a very handsome suit and went on his own. He stayed for about two hours. Alexander asked a girl to dance that he didn't know. They danced a couple of dances together. He walked around, explored, and shared in the experience of his senior Home Coming dance. When he came home, he was very positive about the experience. He even said hello to the girl he had originally asked to the dance. Much to the dismay of her date, he took their picture with his cell phone camera!
Alexander is learning to drive a car. He has his Learners Permit. Driving a car is very stressful and challenging for him. Autism floods the person with sensory stimulation. Being able to discriminate what to process and what to ignore is very difficult for them. Driving a car represents the ultimate challenge for the autistic driver. When driving, you routinely change your attention from one perspective to another. You look at the road, glance at your speedometer and mirrors. When changing lanes, you have to take your eyes off the road momentarily to check to see if it's safe to move over. Adding to this cacophony of sensory input, the behavior of other drivers, the wipers, weather, the need to focus on navigation,
passengers, the radio (no way!), and a host of other distractions, all adds up to a very challenging scenario for the autistic driver.
During Alexander's junior year, Alexander was given a real Chantilly High School Athletic letter and a pin for his participation in Special Olympics basketball. Even though it is the same letter that other high school athletes are given, he preferred to have it displayed in a shadow box rather than wear it on a jacket. He seemed to sense that it was something somewhat marginalized from the conventional recognition. In his second semester of his senior year (February 2007), I received a letter from my son's high school. With some anxiety and apprehension, I open the formal correspondence. Much to my surprise, Alexander had made the HONOR ROLL! It was an official notification from the principal that he had been awarded this academic achievement. We were so very proud of him!
In June, 2007, Alexander went to the senior prom. He had a lovely date, whom was a friend and a fellow anime enthusiast. They had a limo take them to a Japanese restaurant and to the prom. He looked very handsome in his tux! Alexander had a great time. He also received his high school year book. Diana and I were shocked to find how many of his fellow classmates signed his book with nice sentiments. We placed a personal ad for Alexander in the back of the yearbook:
Later in June, 2007, Alexander graduated from High School. He received a regular 22 credit diploma like the other students. He wore his cap and gown at the graduation held at George Mason College's Patriot Center. Alexander graduated with a 3.3 grade point average.
Alexander is now going to Woodrow Wilson Rehabilitation Center in Fishersville, VA. He is learning life skills transition, records and database management, and hopefully getting his driver's license. He knows if anything happened to Diana and me, he would need the skills to manage the house, cars, and all that we would leave him. He also recognizes that his own personal growth depends on his being able to live independently. He is trying hard to be positive about the training.
For 18 years I have been going into my son's room at night, I sit on his bed, and together we say prayers. We talk. I ask him how his day went. How does he feel? Everything okay at school? Was anyone mean to him? What would he like to do on the weekend? I know that time is running out, that one night in the near future, I will go into my son's room and it will be empty. Just some of his “treasures” on the dresser where he last left them. He will be off to school, the Army, or living in his own place, putting together a life of his own. I will sit on his bed, and wish he were there to talk to me. I will say prayers, just like he was there anyway.
A journey of inches.
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