~a social worker’s struggle to keep her professional and personal worlds from colliding~ 

Don’t hit that bike, don’t hit that bike, I repeated to myself. Learning to drive at sixteen, I tried vigilantly to avoid obstacles in the road. But my caution had no bounds; I would over-focus on that bike, and the car would veer directly toward where I least wanted it to go…

Fifteen years later, the road ahead looked straight and clear. I was happily married, eager to have children, and immersed in my work as a clinical social worker at a non-public school for special education. The students there were so impaired, so unpredictable that they could not be contained in any kind of special program available in the public schools. This school served children ranging from four years old to twenty-one, from learning disabled to emotionally disturbed to profoundly autistic, from socially avoidant to conduct disordered to bi-polar. Each day held new crises, altercations, interventions, and explosions of conflicting tempers, pathologies, and pharmacologies: A five-year-old boy with autism charging down the hall, screaming with his hands over his ears, running from something no one else can perceive; a frantic parent calling with the news that her eleven-year-old daughter has been hospitalized for cutting herself; a non-verbal twenty-year-old hurtling his body against the walls of a small office, trying to vent an inexpressible rage.

These children fascinated me. I was challenged by their challenges and open to their possibility. Nothing intrigued me more than finding a bridge to a remote child. I loved to look for patterns in their behaviors or obsessions and then try to anticipate and interpret their reactions. My greatest triumphs came in devising new ways to reach and teach these compelling children.

Steeped in this brew of disability, I passed my days providing therapy, defusing daily crises, and debriefing combatants. Several times each year I was called upon to train fellow staff members in safe crisis-prevention and intervention. And when all was quiet, I studied case files: brick-thick stacks of evaluations by psychologists, psychiatrists, neurologists, educators, physical therapists, occupational therapists, social workers, and many, many more. Together the documents painted colorful, albeit one-dimensional pictures of each child, from pre-natal development right through present-day functioning. I read them all with professional interest, took relevant notes, and filed them away.

And then I became pregnant. Right away my friends expressed worries for me: “Aren’t you scared, working at a place like that when you’re pregnant? What if one of those crazy kids tries to hurt you?” But physical safety was low on my list of worries. I had never been hurt on the job, and felt pretty confident with my personal safety training.

Something else entirely had begun to frighten me about working where I did while pregnant. Each day I came face-to-face with the myriad things that can go awry in the miraculous process that creates a human being. All around me I saw disabled, fragile, troubled kids whose futures hung like shadowy question marks above their heads. As the weeks passed, I realized I did not feel “other” from them or their families; I did not believe that disability could never happen to my child. In my world, disability was the norm; nearly all the children in my life at that time were severely impaired. Why wouldn’t it happen to my child?

I continued reading evaluations, but from a new, deeply personal perspective. Now I focused on the factors that professionals and especially parents posit as explanations for “what went wrong.” Every evaluation suggested another cause for the child’s dysfunction, dating back even before birth: “Pregnancy was notable for mother’s use of cocaine in the second month.” “Delivery was notable for use of vacuum extraction.” “Labor was notable for use of Pitocin/Demerol/epidural.” “Pregnancy was notable for premature delivery at thirty-four weeks… for mother’s use of decongestants during the second trimester… for mother bleeding in the first trimester… for mother’s use of cigarettes/alcohol/caffeine… for use of forceps during delivery… for volatile relationship between biological parents throughout pregnancy… for mother slipping on the ice in seventh month… for absence of pre-natal care… for mother’s exposure to Chicken Pox / Fifth’s Disease / Listeria / Salmonella / mercury / lead dust / second-hand smoke / dry-cleaning chemicals / household cleansers / exhaust fumes / asbestos / carbon monoxide / pesticides,” on and on.

Each evaluation offered me a new worry, so I resolved to shield myself and my child against any prenatally “notable” force. I saw how these children suffered; I saw how their parents suffered. I was bombarded with it each and every day. I would ensure that disability would not happen to my child. I believed my first maternal obligation would be to protect my child from all potential agents of harm. And I believed it was within my power to do so.

I focused on avoidance, on circumventing every imaginable hazard: Don’t hit that bike, don’t hit that bike. I was vigilant. I ate carefully and organically, drank only bottled water, kept a distance from colds and illnesses, breathed only fresh or filtered air, and exercised regularly and mindfully. I ingested no pain-reliever or antibiotic; allowed myself no alcohol, no caffeine, no soft cheese, no cold cuts, no tuna. I accepted no novocaine when I had two teeth filled. And I powered through my 28-hour labor with no drugs. Through it all, I felt virtuous and vital and clear of purpose. My eye was on the prize: I would steer clear of each and every risk factor and manage the outcome of my pregnancy.

Finally, after nine months of fastidious safekeeping, our beautiful son arrived. The instant of his birth was dazzling. That first glimpse of his head capped in silky baby hair. The climactic pronouncement: “It’s a boy!” His triumphant inaugural cry. The utter relief of release. Tears of joy and wonder on my husband’s face. The sudden surge from unprecedented pain to incomparable elation. The rush of pride and awe at having produced a new life, a whole person. A primitive recognition of accomplishment: “I did it!” The pristine exquisiteness of a just-born baby. The thrill of finally meeting him, seeing him, having him. A breathtaking realization: “I’m a mother!” All packed into a fraction of a single electric instant. And in the midst of it all, right within that very instant of astonishing exhilaration, I saw it on the doctor’s face: Something was wrong.

Never before or since have I fallen so hard, so suddenly, or so far. Here was the unthinkable possibility that everything was less than perfect. In that moment, there’s perfect and then there’s everything else. Nothing short of perfect will do. And so, despite all that led to this moment, I was blindsided by the crash.

In retrospect, the shock was more about the look on the doctor’s face, than about what was actually said. The doctor told us that our brand-new son had a small vascular problem that could require several surgeries to correct. He said it was “likely due to some flaw in fetal development, possibly in the second trimester.” He said, “Perhaps you had a virus.” Excuse me? No, I did not have a virus. 

And just like that, my moment of brilliant sunrise clouded over, and now my radar was on. My husband remembers me asking him, that very first night: “If that went wrong, what else might be wrong?”

The answer to that question unfolded over the next several years. As our son grew, I diligently checked off developmental milestones as they were achieved: Eye contact? Check. Sleeping through the night? Check. Rolling over? Check. Using two-word phrases? Check. Wait a minute—what happened to eye contact?

While he was good-tempered and docile, our infant son was often found frowning in his baby stroller when people peeked in, tiny furrows embedded between his little brows.

“He’s contemplating the universe,” I explained lightly, secretly wishing for gurgles and giggles.

While the other two-year-olds in the playgroup were splashing gleefully through the sprinkler, mine was examining the sound a pebble makes when knocked off one step onto another. “He marches to the beat of his own drum!” my parents boasted.

Having memorized local roads and highways, my son would go to pieces if we took an alternate route to a familiar place. “He’ll keep us on our toes,” my husband would acknowledge, turning the car around.

But by the time our son was three, we had some real concerns. He didn’t know how to play with other kids. He grew anxious or frustrated whenever anything was new or challenging to him. We needed to keep life routinized and predictable for him; he couldn’t bear anything unexpected. He clung to us for security, consistency, and understanding, and seemed to recognize that separating from us would place him in a world that was incomprehensible and unmanageable to him—so he wouldn’t separate. He couldn’t count objects, couldn’t make eye contact, and often dissolved into unpredictable, high-intensity meltdowns. We were overwhelmed and exhausted. And what exactly was going on remained frustratingly elusive.

Over the years, our road together has been a bumpy one. Our son rebounded easily from three vascular surgeries that seem to have scarred us in some ways more than they did him. He has benefited from a wide variety of therapies for a wider variety of issues. At school, he has been well-placed in a special education program where he works diligently. We shore him up with reliable routines, healthy food, social prompts, and upbeat reassurances and send him on his way each morning, holding our breath until he returns home worn down by the demands of the day.

Today our son is a bright, feisty twelve-year-old. He is articulate and funny, affectionate and handsome. He loves to play, imagine, ask questions. He has an innate ability to memorize dates and historical events that confounds adults and astounds peers. His heart is kind and his spirit is gentle. Our son is as loving and loved as he is difficult and draining. He can be impulsive, provocative, hyperactive, rigid, and obsessive. Transitions must be scripted for him, until they become as predictable as the movies he watches and quotes over and over again. On bad days, if a tiny toy hat from a tiny toy figure goes missing, the whole day may be ruined for the entire family. He can be unstoppable as a steamroller, barreling through conversations, laying flat the feelings of others—especially his little sister. He cannot sustain focus and eye contact is still fleeting. He tends to play by himself because he doesn’t understand how to join with peers. He has had periods of incapacitating anxiety. His many phases and features reflect the multi-faceted hues of the autism spectrum, with undertones of attention deficit and hyperactivity. He bears heavily the Special Ed Badge of Membership: a brick-thick stack of evaluations, as weighty as our worries.

Sometimes, in my lower moments or his lower moments, I look at my son and wonder how we got here. One day I feel disbelief: How could this have happened, when I worked so hard to prevent it? Another day I feel bitter: My friend drank soda with aspartame every day during her pregnancies and her kids are just fine. Another day I feel blameless: I know I did everything I could to prevent this, so it must have been “meant to be.” Many days, like most mothers of children with special needs, I find ways to blame myself for my son’s difficulties. In my case I consider whether I was too anxious, too uptight, too worried during my pregnancy—if I had relaxed more, hadn’t been so vigilant, maybe he would have been okay. Had I learned nothing behind the wheel of the car, fifteen years earlier, focusing too hard on what I most wanted to avoid?

People have said to me that the universe gives us only what we can handle and that my son was meant for me. They say my son is lucky to have a mother who knows so much about children with special needs, who has (nearly) endless patience, who recognizes what help he needs and where to find that help. And that may be true. But I know another truth: My son has taught me lessons of humility and humanity that I would never have learned without him.

__________________________

During my pregnancy, I fixed my gaze on that bicyclist by the side of the road: Don’t hit that bike, don’t hit that bike. Somehow or other, despite or because of my best efforts, I veered straight toward it. I hit that bicyclist head-on, and we are both bruised and battered and tangled inextricably together. So we sit, he and I, by the side of the road, and watch other cars and bicycles glide easily, carelessly past us. And we hold each other and love each other and feel so deeply thankful that our worlds collided.

“I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It’s like this..”

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he’s like your in-laws, and you did marry into the family. It can’t be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don’t know where you are. What’s going to happen to you? Will you live through this? This is the day you get the diagnosis. “YOUR CHILD HAS AUTISM”!

There you are in Beirut, dropped in the middle of a war. You don’t know the language and you don’t know what is going on. Bombs are dropping “Life long diagnosis” and “Neurologically impaired”. Bullets whiz by “refrigerator mother” ” A good smack is all HE needs to straighten up”. Your adrenaline races as the clock ticks away your child’s chances for “recovery”. You sure as heck didn’t sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You’ve done everything right in your life, well you tried, well, you weren’t caught too often. Hey! you’ve never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She’ll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new “miracle” drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You’re excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You’re insurance company refuses to provide therapies for “chronic, life long conditions” and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen. You’re exhausted because your child doesn’t sleep.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they’ll understand, they are living through similar times. For those people you will be forever grateful. Don’t get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren’t flying and bombs aren’t dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

From state to state, even from district to district, the quality of education across the United States has been strikingly inconsistent. Variables such as funding, resources, teacher-education, and demographics have allowed significant educational inequities to persist. In today’s global economy, this educational system stands out as shortsighted at best, discriminatory at worst.

In 2010, Common Core State Standards (CCSS) blew in like a tornado to slam shut these achievement gaps and whip every student into readiness for college and careers by the end of high school. The term “Common Core” refers to a set of “core” standards that every student across the country will be expected to meet, regardless of location, funding, resources, teacher-education, demographics, or ability. Oh, wait—ability? Where do students with differing abilities fit into this one-size-fits-all equation?

Since the tenets of CCSS include skills like “close reading,” “analysis,” and “practical application,” let’s give the standards themselves a close look to analyze their practical application to our children on the autism spectrum. I’ll describe some of the new challenges our children and their teachers face and offer my take on the potential benefits (yes, there are some!) of Common Core for our uncommon kids.

CCSS has already been adopted in 45 states, which have been granted federal Race to the Top funding in exchange for their compliance. Given this rather coercive initiation, CCSS has not been warmly embraced by educators and still faces a significant publicity problem: It is widely perceived as a mandated curriculum. Teachers feel they are being forced to abandon tried-and-true lessons and to adapt to someone else’s idea of curriculum. As they dig in to the standards, and to the “guided” pathways and text “exemplars” offered by Common Core, they fear their independence and creativity are being stripped away.

But in fact, as of now, CCSS does not dictate curriculum. Instead CCSS sets a destination. For now, the route toward reaching that destination is up to each individual teacher. CCSS is a set of learning standards in Math, English Language Arts, and Literacy in Science, Social Studies, and technical subjects. It is not a curriculum. In other words, it doesn’t matter how you get there… just get there if you can.

Nevertheless, teachers are in a bind. On the one hand, in recent years unprecedented numbers of students on the autism spectrum have been placed in mainstream classrooms. Teachers have been told: Differentiate! But now, with the advent of CCSS, teachers are being told to bring all students to a common destination. As classrooms become increasingly diverse, standards become increasingly uniform. It’s a twister.

And though CCSS does not dictate how teachers must teach, it does dictate, quite specifically, what learners must learn. Not surprisingly, parents are not warming to this idea either. Every student will be assessed according to his or her progress toward standards of high-level abstract thinking, including our children on the autism spectrum, who tend to be grounded firmly in concrete.

The ultimate goal of Common Core is to mold a generation of adults who are adept at reading complex literature critically, at engaging with informational texts thoughtfully, and at analyzing evidence in a way that is, according to CCSS, “essential to both private deliberation and responsible citizenship in a democratic republic.” Does that sound like your child? No? Not mine, either. But read on.

These types of pie-in-the-sky ideals are examples of meta-cognition (ie. thinking about thinking). Without meta-cognition, information is gathered on a superficial level and tends to stay with students only until the next quiz. But when information is reflected upon, it becomes knowledge that may be assimilated for life.

For our kids—who struggle to take the perspective of others, who think that “reading between the lines” is something that requires a magnifying glass, and who almost never learn spontaneously from their own mistakes—reflective thinking sounds like the stuff of fairy tales. And it may well be. The standards are intense, the stakes are high, and some of our children may never fully comprehend the nuance and depth that both enhance and complicate this colorful new frontier. Toto, we are not in Kansas anymore.

But just as Dorothy discovered in Oz, certain familiar and supportive elements from home have found their way into this mysterious new world. Remarkably, there are aspects to the structure of Common Core that may actually suit our children on the spectrum. In fact, some of them happen to align closely to strategies that autism education specialists, like myself, have been promoting
for years.

Primary among them is that the standards outlined in Common Core are sequential steppingstones, like signposts marking the way toward higher-order goals. Though undoubtedly quite challenging, these signposts guide learning progressions, one step at a time. This kind of orderly, bite-sized instruction has always been beneficial for kids on the spectrum.

To this end, along with creative classroom activities, in the early elementary years there will be plenty of repetition, memorization, and practice of discrete skills for all students until they achieve mastery. Dry? Maybe. But this kind of pinpoint focus can only be helpful to our kids on the spectrum. Committed efforts will be made to solidify a sturdy foundation of rote skills as more abstract concepts get layered on top. This means that the days in which a student—my own son, in fact—is expected to solve algebraic equations while still adding on his fingers, may be over.

So to achieve its very lofty goals, CCSS encourages all students to become specialists— not only about presidents and train schedules, but also in specific fundamental academic areas. Since our kids are often, by nature, specialists rather than generalists, specialized mastery may be a good beginning for them.

Under CCSS, children will not only be taught discrete skills in depth, but will be shown how to apply skills fluently to real-world problems. In my son’s case, the only way he will engage with math concepts is if they are introduced in terms of time, money, or years. Like my son, many children on the spectrum are available for learning only when the curriculum connects to familiar and high-interest topics. To meet the broad Common Core standards, teachers will have to encourage and help all students to activate prior knowledge and connect what’s already known to new information. CCSS guides teachers to make real-world connections overt in order to engage students. Getting them to generalize those skills, however, may be a course of a different color.

Still, another potential benefit for our children on the spectrum is Common Core’s emphasis on digital literacy. Standards in digital literacy are in place to ensure that every student masters keyboarding, word processing, and graphic manipulation. Technology is not only often highly motivating to students on the spectrum, but also offers a host of alternative learning and testing options.

Along these lines, Common Core will include unprecedented digital opportunities.
Assessments can be administered and completed via tablets or computers. Moreover, digital testing accommodations such as enlarged print, on-screen highlighting, use of a calculator, text-to-speech technology, and even speech-to-text technology will be built directly into most systems, though, as before, available only to students who qualify for them.

Another bonus could come in the form of Universal Design for Learning (UDL) which is a national program specifically designed to ensure that the learning needs of every kind of learner are met in the classroom. Although UDL has been available for several years, Common Core encourages teachers to turn to it now as they work to adapt to CCSS. UDL guides teachers to present information in multiple ways; to give students ample opportunity to demonstrate their knowledge through diverse and active means; to offer students choices that allow them to engage in ways that are most comfortable and motivating to them; and to offer assistive technology devices and services, as appropriate. For our children, who learn and demonstrate their learning in dramatically diverse ways, these varied options may open up a world of opportunity.

Even so, there is no doubt that, through the grades, Common Core’s broad standards become far less about regurgitating specific factoids than about meta-cognitive generalization. And there is no doubt that this is the very kind of higher-order thinking that may be unattainable by many of our children on the spectrum.

More than ever, it will fall to teachers and parents to walk arm in arm together with our children, from signpost to signpost along this perilous yellow brick road. As educators and parents collaborating effectively, we need to face our children’s strengths and challenges; we need to acknowledge our own limitations and each others’ areas of expertise; we need to allow our kids to keep their feet securely on the ground while encouraging them to reach for the stars.

But there’s a good chance we’ll find ourselves clicking our heels together a few times, too.

_______________
Barbara Boroson is the author of Autism Spectrum Disorders in the Mainstream Classroom: How to Reach and Teach Students with ASDs (Scholastic, 2011). She speaks at educator conferences and delivers professional development workshops to school districts all across the country. She is also the parent of two children, one of whom is on the spectrum.

For more information on Common Core:

• Common Core’s Application to Students with Special Needs.
• Parents’ Backpack Guide to Common Core Standards.
• Great 3 minute video describing the principles behind Common Core.