Benny and Me
A Father Sees Himself Through his Aspergers Son
by Mike Postma, Coordinator, High Potential Services
Minnetonka Public Schools
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.” (Source: video on twice exceptional
learners located at: Hoagies' Gifted: Twice
Exceptional) 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.
Read more about Benny in Hey
Benny! What's New?
References:
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.
©Copyright 2009 Michael Postma
Thanks!
