It was a miserable day in the fall of 2001 when we got our first glimpse of what our lives would be like for the next twenty odd years. One of those days where a hint of the winter to come was evident in the chill that permeated the air. We were a young family back then; a mom, a dad, one young daughter in elementary school, a newborn, and a young lad, Ben. Ben had always been a very alert boy; one who needed little sleep and those eyes; eyes that betrayed a deep longing for information. To say he was curious would be an understatement. As a boy, he was constantly getting into everything; taking things apart; exploring; sneaking; finding trouble even where trouble could not possibly be found. On this particular day, while mom was occupied with the baby, he covered his upper torso with marker before dressing himself, shirt on backwards; head through the arm hole, and of course, no pants. Armed with a small army of rubber snakes, Ben had decided that it would be in his best interest to ‘find’ the local park. Dog in tow, Ben jimmied the lock on the back door, skirted the pond out back and made his way to the park about a quarter of a mile away. One frantic hour later Ben arrived home via the back seat of a police cruiser thanks in part to the intervention of a Good Samaritan neighbor who happened to witness the young, unaccompanied felon zipping down the slide and decided to call the authorities. This neighbor, the police later revealed, had sensed that something was amiss.
We have learned, the hard way sometimes, that dealing with Ben was going to take a little extra; a little something else; an understanding, which at that particular moment, had evaded us; and with much consternation on my part. You see, I work in the field of Gifted and Talented education and by that time already had some experience working with what we have since labeled, the twice or multi-exceptional child. Ben it turned out had Aspergers Syndrome, something we were to discover the hard way, and I, the so-called expert, didn’t see it in my own child. Nor did I see it in myself, and yet, as we grew up together, I saw and relived my own childhood as a multi-exceptional student, through living with, chasing, laughing, lecturing, supporting, admonishing, dragging, and yes, advocating for Ben.
Ben is now ten years old and attending a school that not only understands the twice-exceptional child, but also goes to extreme measures to make accommodations for the twice-exceptional child; truly, a rare feat in the era of modern schooling. However, life was not always this way. By the time Ben had enrolled in third grade we had worked through two school systems, one pre-school, and numerous day cares. Ben was just different.
As his parents we watched and struggled for almost three years before getting an answer to what was happening with Ben. In pre-school he refused to ‘play’ with the other students or engage in ‘whole class’ learning preferring to spend his time exploring and investigating his ‘interest’ areas.
Flashback: Why doesn’t everyone love Geography…why won’t my fourth grade buddies talk to me about the historical implications of Alexander’s conquest of Persia…I just spent my entire night with a flash light reading about the man…Uh-oh, the teacher is saying something to me…I need to slump down a little farther, perhaps she will see over me…kids are looking at me…shame, panic, anxiety…I hate math.
Eventually, we pulled him out of pre-school to accommodate his strong desire to remain at home. It was only later that we discovered that home was his comfort zone; that he would struggle (even today) with the transition from that comfort zone to any other place. Any place that is, where he was expected to engage or be social with strangers. It was at that same time that we also noticed a peculiar attachment to certain types of clothing (He would only wear seamless pants and shirts that would not ‘rub’ against his skin. I used to love corduroys; what was I thinking?). In addition, Ben would not, could not, settle down at night. His mind would race through endless possibilities of what tomorrow might bring; bad things on a school night, or, anticipating amazing adventures for the upcoming weekend.
Kindergarten did not alleviate our stress no picnic. Based on our religious principals and the rumors of excellent student achievement, we decided to enroll Ben in a local parochial school with a faith-based approach to education. Almost immediately I felt that something was amiss as I witnessed a school administrator administer a timed, kindergarten readiness exam. Hood pulled over his head; Ben answered some of the educator’s questions in a whisper and simply refused to respond to others. “He knows these answers” I screamed in my head. “Why won’t he say anything?” Every now and then he peaked out at me with a look of pure fear…
Flashback: something is knocking at the back of my brain…a memory perhaps…testing, testing, testing…anxiety, blankness…failing.
Despite it all, Ben was formally admitted with some apprehension and began kindergarten one sunny September morning alongside some twenty-odd scamps. All seemed well at that point. He went to school every morning with much ado and was picked up around lunch with much enthusiasm and relief. I tried not to notice. Later that fall I had to notice and both my wife and I became increasingly concerned. Much of the work coming home had large ‘incomplete’ or ‘unsatisfactory’ labels stamped on the top right corner or what appeared to be oceans of red ink; it seems that red ink is highly correlated with failure; while most his classmates papers were covered with ‘smiley face’ stickers and pluses. As we waited in trepidation for the first parent/teacher conference to roll around it had become fairly evident that Ben was not making the grade. His teacher was concerned. He didn’t seem to be paying much attention, and, while not a behavior problem, he wasn’t ‘up to speed’ based on the progress of the ‘typical’ kindergartener. She also pointed out that he refused to speak. Perhaps, I thought to myself at that time, there isn’t much interesting within the classroom to speak about. But, having learned some social mannerisms through the years, I refrained. Was there something we were missing? Surely the teacher who had spent many years at the kindergarten level would let us in on the secret. No, she wanted him to apply himself and just like that it was over. No suggestions, no solutions, no accommodations, no changes.
Life in Kindergarten did not improve for Ben. The failures continued as did the red ink and a conspicuous absence of ‘smiley faces’. His absences were up, learning was down, and intervention was no where to be found. As the year came to a close, the school announced its intentions to retain Ben. Adequate yearly progress had not been made they said. Have you diagnosed the problem, we asked? He just wasn’t ready for Kindergarten, they responded. But he’s six, loves art, and is great with numbers, we countered. He’s just not ready, they stated. But Ben will be seven and still in Kindergarten, we started but slowly trailed off. See you next year, they beamed. Good bye, we muttered. Good riddance, whispered Ben. Bad genes, they thought.
How could this have happened? Kindergarten is supposed to be a fun, positive learning experience for children. It’s supposed to be the launching pad that jump-starts the rest of your life. It’s supposed to engage kids in the love of inquiry, the acquisition of knowledge, and the first step to success. Now what? “Its okay, Dad”, Benny ventured, “I really don’t have to go back to school. I think I already know everything I need to know to survive.” I agreed.
Our first break through occurred that following summer. In desperation we spoke with the principal at one of our local public schools. As we nervously began to tell our tale, expecting the same results, the principal held up her hand. Here it comes I thought. Ben will be growing a beard while learning his ABC’s. “Have you had Ben tested for Aspergers?” You’ve got to be kidding me. I have worked with twice exceptional children before but my son? Slowly, the plot was unraveling in my mind. How embarrassing it was to have all that education, all that learning, all that practical experience, and not see those traits within my own son. Aspergers…aspergers…his social anxiety, his clumsiness, his apparent reading disability, his intensity, his sensitivity, his mathematical wizardry, his hood….my social mishaps, my mathematical dyslexia, my intensity, my fanaticism with social sciences, my apparent OCD (Obsessive Compulsive Disorder: ask my wife), my lack of empathy…Ben was me and I was Ben, and yet we were so different. Aspergers…it was starting to come together.
Eventually, Ben was given an Individualized Learning Plan even though he only qualified based on his reading and speech delays. His anxiety was so high the Autism Spectrum Disorder testing could never be completed. His plan, however, did mention the high probability of its existence based on the numerous symptoms he displayed.
For the next year and a half Ben began to improve due to the immense and intense efforts and indescribable caring of his teachers. He made a few friends, generally went to school without a lot of resistance, and even learned to love baseball…well, at least the hitting part. Transitions were still difficult, the Aspergers was still prevalent but at the very least he was making progress and had formed a close bond with his teacher, who incidentally, looped the following year into second grade much to our delight. It takes a special teacher to enjoy, even welcome, the challenges that Ben brought to the classroom. Indeed, any teacher with the ability to maintain best practice in the classroom while teaching to the special needs of the specialized learner should be given the respect and adoration of the masses.
They say, whoever they are, that all good things must come to an end and they did. Mid way through second grade Ben’s teacher announced her pregnancy and by mid March she left on maternity leave. I think Ben decided to go on leave as well. Despite the heroic efforts of the new teacher, the principal, and numerous others; Ben spent the majority of his days with the social worker or at home. A week into the new teacher’s tenure Ben began to sob uncontrollably. The intensity of change combined with his penchant for over-excitability completely overwhelmed him (Dawbrowski, 1964; Mendaglio, 2008; Piechowski, 2006; Piechowski & Daniels, 2009).
Flashback: I am sitting at my desk in third grade in anticipation….Phys Ed. was next. I loved Phys Ed. I loved sports. It was one thing I excelled at and the kids didn’t bother me when I played sports…they wanted me on their team. Sports is my throne. How was I supposed to know that strange kids weren’t supposed to be athletic? “Boys and Girls, because you were late coming in recess and talking in the halls, we will not be going outside for Phys Ed. We are not going to do anything but write about what we learned from this experience.” My body is beginning to quiver…it seems that all the blood is leaving my body and taking up residence elsewhere…I can’t think, function…tears, more tears…why am I crying…I’m almost nine.
We lost Ben for a while and then we moved.
New house, new city, new school. The first day of school Ben would not get out of bed. Realizing the transition was going to be rough I allowed him an extra fifteen minutes to sleep. The first day of school is always rough especially after a summer filled with catching snakes, building elaborate habitats, creating and designing cities all over the property, and other stimulating activities. This time there was a new school involved as well.
By now you have probably ascertained that kids with Aspergers struggle with any type of transition. They also struggle with the lock-step approach to schooling that many of our public systems employ and just to add a little more stew to the pot of frustration that is the daily experience for the typical twice exceptional child; they hate the intervention/remedial approach to learning preferring to work on those interest areas in which they are strong. Most public schools however, insist on remediation before the reward….as Dr. Elizabeth Neilson, University of New Mexico professor states “If we take the very thing that you are worst at and said that’s what were going to do for most of the day. You are not only going to do that in reading but also in social studies and by the way let’s get out that history text. How many times can one fail in a day and not feel like you are truly a failure.” It takes a special school to recognize and work with these unique kids.
I went back to check on Ben’s progress. There wasn’t any. I have always struggled with these types of situations with Ben. Do I pull him out of bed, dress him, carry him to the car, and drag him into school or do I use more gentle persuasive tactics. I would recommend the later but on this occasion, a little flustered, I chose the former and within a few minutes was chasing Ben through the woods; me in my office clothes, Ben in his underwear and socks. Man is he getting fast. There were many other days like this before that daily morning ritual began to improve. The remedy? Negotiation and compromise. We worked with Ben’s array of teachers and incorporated into his IEP a ‘break day’ every few weeks. A day in which he can stay home, explore, relax, and generally release any pent up anxiety. These ‘break days’ also worked as a motivational tactic for getting him to school regularly and on time. He also gets little breaks on a daily basis within the school day to have some quiet time or release some anxiety through physical activity in the gymnasium or the motor room; another effective intervention that gets him through the daily grind. As I reminisce I wonder why I never had access to the same opportunities; especially in math; did I mention my distaste for the field?
Today, Ben still struggles with the concept of school. Although he is making progress and is learning; he still insists that he knows all that is needed to survive and cannot fathom the many ‘government regulated’ years he must still attend classes. The point is that he is making progress as is dad. However, I am worried. I am worried about puberty, middle school, high school, girls, teachers, drugs, alcohol, relationships and more. Ben is just beginning the journey. I am about half way through and all those obstacles plague my outlook and expectations for Ben. Why? I have lived them all; the embarrassment of puberty, the inability to socialize with the opposite sex in a normal manner or develop deep relationships with people, the dark memory that is middle school, the compensations of alcohol dependency to mask my social dysfunction, the lack of a true, empathetic, and understanding social support network, and a spiritual quest for God that emphasizes relationship; one I had to pursue from an intellectual stand-point that continues to this day; and the deep depressions of not fitting in lasting which lasted for years before I sought medical assistance. This despite my constant parachute; one that propped me up in the leanest times; athletics. Unfortunately for Ben, while he can hit a baseball a mile, does not have this parachute. So I wait and I worry and I protect and I hope. I hope that he will find a companion; a friend that understands and leads him through this difficult journey when my wife and I are not around. An ally that will help him to face his battles. A companion that will push him when it’s appropriate and restrain him when his common sense isn’t so common. A supporter and confidant.
Ben doesn’t know that I struggled through life just as he has. Ben does know that I haven’t always been the ‘greatest’ father. However, he does understand that I love him dearly and will continue to marvel at his unique thoughts, ideas, and creations even during moments of challenge and frustration.
Life doesn’t ask us what kinds of kids we want. Neither does it send us an advanced checklist of qualities we would like to see in our children. We must deal with the circumstance that we are given whether we believe it is fair or not. Would I have made changes to my make up or that of Benny’s given the opportunity? Perhaps, however, living with this burden has forced me to adapt, to persevere and develop resiliency skills that continue to assist me to this very day. We know much more about students with ASD now than we ever have. I expect that these advances will make life for Benny a little easier to navigate; however, there are no guarantees. So we continue this journey, he and I, and we hope…we hope that tomorrow will bring a kinder, more understanding world; a world that values our abilities and appreciates our shortcomings; a world that accommodates our differences and respects our right to learn at our own pace, a world that laughs with us and not at us and perhaps most importantly, a world that allows us to breathe.
Dawbrowski, Kazmir (1964). Positive Disintegration. Boston: Little Brown & Co.
Mendaglio, Sal (2008). Dawbrowski’s Theory of Positive Disintegration. Scottsdale, AZ: Great Potential Press.
Piechowski, Michael M. & Daniels, Susan (2009). Living With Intensity: Understanding the Sensitivity, Excitability, and the Emotional Development of Gifted Children, Adolescents, and Adults. Scottsdale, AZ: Great Potential Press.
Piechowski, Michael M. (2006).“Mellow out” They Say. If I Only Could: Intensities and Sensitivities of the Young and Bright. Madison, WI: Yunasa Books.