Miracle Milestone

     I wish all the naysayers of the past 23 years could see Sarah now. All those educators and therapists who told me my autistic spectrum daughter would “never be independent and never go to college,” were WRONG.  As of May 21st, Sarah graduated from Pace University with the Class of ’14.   No, she didn’t squeak through with Cs.  My super-determined daughter worked tirelessly to achieve a 3.59 GPA and earned a CUM LAUDE award on a yellow ribbon. Like all the neurotypical students who achieved honors, Sarah proudly wore her bright yellow ribbon with her cap and gown.  How many students worked as hard as my daughter?   How many were so delighted they couldn’t stop beaming for three whole hours?

     I’m not just another proud mother bragging about my daughter’s grades at her college graduation. (But I’ll admit to not being humble).  I’m writing this for all of the new parents   who are just beginning their journey of raising a child on the autistic spectrum.  Here’s my message loud and clear:   Don’t give up just because you’ve been discouraged by doctors and educators who read your child’s test scores and use terms like “pervasive developmental delays.” These so-called experts might be right about some children.  But are they right about your child?  When does a negative prognosis become a self-fulfilling prophesy?  What are you able and willing to do to prove “the professionals” wrong? 

     The answers to these questions will vary widely according to where you live and the resources available in your area, as well as how much time and money a family can devote to a child with an ASD.  There are no easy solutions, or if there are, I never found them.

     However, my first piece of advice is: do not be limited by labels.  Sarah has had a frightening variety of diagnoses:  Static Encephalopathy, Pervasive Developmental Disorder (PDD), Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), atypical autism, non-verbal learning disabilities (NVLD) and just “plain vanilla” autistic spectrum disorder.  I’m not saying there’s no truth to these labels.  Sarah’s had lots of delays: her eye contact was poor; she flapped her hands; her speech was scripted and repetitive; her interests were narrow and limited.
     Many of these symptoms have disappeared, but some will—sadly—stay with her forever.    But the good news—and bad news—is that once Sarah has her mind set on something, she refuses to give up.  Whether it was having an endless tantrum as a toddler, or rewriting a college paper several times, our daughter has always been the Energizer Bunny.  Above all things, what Sarah has always wanted most was independence.   As a young child, she screamed and fought to dress herself, ripping her clothes in frustration because she didn’t have the motor skills to accomplish the task.  It was Chinese water torture to persuade Sarah to allow us to teach her the life skills that her twin brother always mastered way ahead of her.  Our daughter preferred to pull out hanks of her hair rather than let us teach her how to brush it properly. It’s a miracle she never caught pneumonia from going out with a wet head. Our daughter preferred to pull out hanks of her hair before learning to use a blow dryer.              
     Not surprisingly, Sarah also presented us with a heartbreaking array of learning disabilities: delays in receptive and expressive language, sensory processing issues, delays in reading and writing, and difficulties with abstract thinking which persist to this day.  Nevertheless, Sarah yearned to learn. You might say she was desperately determined to succeed at whatever was difficult for her, and that was almost everything.  We loved her work ethic—as oppositional as it was.   What else could we do but hire a smorgasbord of tutors to help her succeed?               

     Somehow we persevered through Sarah’s mostly impossible childhood.  With the help of a  team of therapists, teachers, psychiatrists and drugs, we taught her enough about grooming, life skills, and academics that she was able to leave home and go to college at the same time as her twin brother Max. 
     However, Sarah’s transition to Landmark College was anything but smooth.  Despite the fact that Landmark’s population consists entirely of disabled students and promises lots of support, Sarah quickly fell through the cracks. She gained 16 pounds in her first MONTH of freshman year.  Her first room-mate moved out on her after only three weeks.  Even worse, nobody showed Sarah where to bring her laundry, and she didn’t ask.  Instead she walked around smelling like a homeless person until I convinced the RA to take her just ONCE to drop off her laundry bag.

     Academically, she struggled in some subjects and got A’s in others.  Sarah almost failed the required Biology course because she never went to the laboratory to do experiments and write lab reports.  Why?  She literally did not understand what the word “lab” meant or that it was required, so she ignored it.  In special education her whole life, Sarah had never studied science in a laboratory, nor had she participated in experiments that required beakers and Bunsen burners.  Why didn’t she ask when she didn’t understand?  Sarah sometimes buries her head in the sand when she has a problem—a dangerous habit she has only partially outgrown.  On the other hand, she earned As in French because of her ear for language and A’s in music because of her perfect pitch.
     During the second half of her freshman year, Sarah’s advisor, Sally, suggested that she might not be cut out for college. Knowing that my daughter had difficulty with abstract thinking, Sally confessed that she’d tried to explain her misgivings to Sarah in concrete terms.

     “Most Landmark students go on the college journey with a broken toe or a broken foot.  You’re trying to do it with two broken legs and a broken arm.”  She reported.  “I wanted her to be able to take in the information,” she added, sounding pleased with her analogy.

     “I hope Sarah didn’t take in that information!”  I seethed.  Could there be a  more insensitive and inflammatory statement? I arranged for Sarah to have a new advisor, who turned out to be Sally's polar opposite: warm, encouraging and upbeat.

     In December 2012, Sarah managed to graduate cum laude from Landmark with an Associate’s Degree.  The student “who might not be cut out for college” transferred to Pace University with a $17,000 merit scholarship and made Dean’s list 4 out of 5 semesters.  Although Sarah hit a few bumps here too—failing two multiple choice tests for one course this semester—it was mostly smooth sailing thanks to the academic support and accommodations provided by OASIS,  the university’s support program for high-functioning autistic spectrum students.

     Currently, there are 37 students in the OASIS program at Pace University.  Sarah is only the third to graduate, although four more are expected to do so in 2015.  How rare is it for a student on the spectrum to graduate from a four year college?  I looked on Google for an answer and found NO statistics about college graduates on the spectrum.  More encouraging were the links to a growing number of autism support programs at colleges.  Finally, higher education is finding ways to include this growing population of students whose brains are wired differently.   

     A new definition of diversity is emerging on college campuses, one that includes high-functioning autism in the student buffet of races, nationalities, religions and gender identities.  But the autistic spectrum college student is a relatively new phenomenon. The OASIS program is only 5 years old.

     Maybe one of these years Google will be able to compile statistics on autistic spectrum students who successfully complete a four year college.  Until then, I’m not exaggerating when I describe Sarah’s graduation as a miracle milestone.

 

 



               

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