Clarity about the Goal

The idea that a bit of autism may be necessary for major advances in the arts and sciences stuck with me.  Could it be that what I though of as intelligence in a neurotypical person was actually limited by its ordinary approach to learning, problem solving, and observation?  Was there something in my son — this boy with temper tantrums, anxiety, “cognitive delays,” and ADD-inattentive type — that was potential beyond his average IQ testing?  Could it be that the testing is limited in its inability to detect a different way of linking information together? I would not do very well on a test written in Chinese, even if I was the world’s expert on the material tested.  My gut told me not to allow the testing to influence my hope, my view, my expectations of my son.

Temple Grandin was the embodiment of my hopes.  Her story is not just inspiring, but so revealing of the differences in how information is received and processed by her brain.  I knew that even if I did not understand it, I must accept and respect that my child experienced the world differently than the average person.  There is a strong urge to want to move an autistic child along a path that leads to “normal,” but it occurred to me early on, thankfully, that “normal” should not be the goal at all.  He is who he is and nothing less.  Yes, I mean less.  The HBO movie Temple Grandin came out last year and I was once again moved by the truth that the adult world has a place for everyone and can overlook peculiarities when the contribution is valuable.  This is not the case in adolescence.

Every year in the life of a child with AS is important, but the potential for harm to development escalates in adolescence.  Whether because of temperament or discipline, I was fortunate to have a child that was liked for being kind and had shyness that kept him from speaking incessantly or inappropriately in public.  The running dialogue was still there, but mostly internal with some under-the-breath repetition.  By middle school, it was apparent that there was little to be gained socially or academically in school.  He was intimidated and confused by adolescent behavior.  Sensory stimulation in the classroom precluded his learning anything there.  Resource room education, particularly in math, was not really education at all.  Hard decisions were necessary.

At 13, my child identified with and communicated easier with adults than peers.  I wondered this:  What is the value in working desperately to teach him how to interact with crazy teenagers when he would no longer need that skill in just a few years?  There was only so much time to prepare my child for independent adult life.  Everything we learn is a trade off.  If we spend hours a day at the piano and violin, we are likely not to become star athletes.  I knew that this boy was headed for college, likely to study the sciences, most suited for an academic career, and would spend upwards of 80 years as an adult.  There was work to be done, and it was necessary to focus on the goal.  He needed to master algebra, learn to write well, hone study skills, communicate with adults, advocate for himself, manage his time, learn skills for independent living, and be allowed to explore his interests and areas of strength.  After months of research, home schooling was clearly the best option.  One embarks home schooling because of a deep love for the child and the hope that the results will be worth the effort.  I can’t say that I felt confident every day or that I didn’t make mistakes, but I can say that it was the right decision for my child.

If your child has AS, dare to think of it as rare potential.  Be confident when the mainstream just doesn’t seem right.  Your love is a powerful lens that can focus on what is important and allow you to hope for more.

Daring to Hope for More

My son decoded language early.  “Ask me animal questions, mommy,” was what we heard over and over in the second year.  His precocious language skills masked the lagging social development.  He received four little dinosaur books for his second birthday and all he wanted for the next several years was encyclopedic references.  My reading led me to believe that his learning and memorization would be rote.  He would not gain true meaning or depth, and would give just the appearance of being smart.  His intense interest would remain narrow and would not branch into related areas.

When my gut feelings and my observations conflicted with what the experts predicted, I had a choice.  It is the harder road to be confident that no one knows my child better than I do, and to imagine and hope for more.  He gave me hope.  He was about four when we visited the Science Museum gift shop.  He pointed to a dinosaur model in the glass display well over his head and said, “I want the Albertosaurus, mommy.” I had never heard of an Albertosaurus, that I could recall, and didn’t imagine he could actually know what the thing was – it looked like a T Rex to me – and so I picked it up and said, “Here, let me tell you what kind this is.” Suffice to say I never made that mistake again.  As I would come to learn, he memorized the slightest details in those dinosaur encyclopedias and could take this knowledge and apply it to an artist’s rendering he had never before seen.

Then came animals.  All animals, extinct and extant, every detail finding a home in that little head.  We traveled to zoos and natural history museums, and he was like a sponge.  He loved to share his knowledge and put his excellent language skills to good use at home and in the classroom.  He loved to go birding.  Of course, he had memorized all the details ahead of time, so I loved to go birding too.  One day I saw a bird I am sure I’d never seen before.  I asked what he thought that was.  “It’s a Clark’s Nutcracker.”  Huh.  I hadn’t ever heard of that.  I looked it up when we got home, but by then I knew my son never answered unless he was certain.  I was grateful that his interest lent itself easily to academic study.  But it didn’t stop there.  Sixth grade was ancient history. He had a middle school social studies teacher that scared me to death.  Something clicked in my son’s brain that year, linking history, natural history, and all of his knowledge about animals and dinosaurs.  Suddenly, the interest had broadened dramatically.  I could have missed that if I was expecting less, but I dared to hope.

This first year of college my son is studying Biological Anthropology, Archaeology & Prehistory, Wilderness, Human Biology, Zoology, Psychology, and Ancient Egyptian Hieroglyphs.  If I had believed his learning to be rote and dismissed and discouraged his passion, he would have risen only to the mediocre level expected of him.  I met an “Asperger’s Coordinator” who endeavored to convince me to accept that, in the fall of 7th grade, my son may have plateaued in his abilities.  God knows how many children and parents this “expert” has harmed by undermining parents’ instincts, dashing hopes, and setting the bar low enough to assure her own success.  But I had a deep love for this child that drove me onward with confidence to reject such nonsense and keep hope alive.

If you are the parent of a child with AS, keep your heart open, have confidence, and dare to reject mediocrity.  Love plus hope is a powerful combination.

 

From Tears to Triumph

I came home from the Neuropsychologist’s office and looked up Asperger Syndrome on the computer.  “Oh my gosh,” I thought, “that’s it!”  There was some degree of relief.  While many believe “labels” are bad, I needed a name, a place to begin, an end to the search for what so what’s next could begin.  As I read, I was overcome with questions about the future.  What will become of my boy? Will he live independently? Will he be successful in school? Will he be married? Will he realize his own dreams? What does this mean for me and for our family?  And I wept.  No, I sobbed. I grieved for my foolish notions of a “perfect” life.  Just weeks earlier, over our tenth wedding anniversary dinner, my husband and I wondered when would marriage be hard.  People said it was hard work.  It hadn’t been.  We hadn’t faced serious challenges.  But on this day, at my desk, reality hit me hard:  ahead lies your challenge.

I dried my tears and vowed that I would rise to this challenge and that the time for grieving was over.  Though I had been a good student, a competitor, and achieved professional success, never before did I have a deeply personal drive.  The results of my choices would mean everything to this little boy.  I must do everything in my power to get this right.  It felt daunting, but a few years later I knew that I was blessed with this challenge.

Six days ago, I took my son back to college for his second semester.  As I helped get his computer and other electronics working before my husband and I left for the long drive home, an email from the Dean of the college popped up.  “Congratulations on your academic success…You have been placed on the Dean’s List for the Fall Semester of 2010.”  The tears were back.  But these were tears of joy, pride, and relief.  Somehow, though the odds seemed bleak at times, we navigated our way through schools, special education, tutoring, IEPs, psychologists, speech therapy, home schooling, driver’s education, job applications, international travel, the ACT, and college admissions, and arrived at the finish line of our dreams.  We have a son with AS who attends his first choice, selective college 300 miles from home, manages his time, keeps his room neat, advocates for himself, is on a first name basis with his professors, and is on his own path to success.

I will tell you the details later.  Twelve years is a long time.  If you are the parent of a child with AS, I want you to have hope.  I want you to know that you can get from here to there.  It is not up to the school or the teachers or anyone but you.  There is a unique bond between a parent and child that lays the foundation to achieve what seems to others impossible.  There will be no map to follow, so stop looking for one.  Love plus hope is all you need.