OTHERS

Autism Celebration Month

Autism Spectrum Disorder (ASD)

GEEGE TAYLOR

Geege Taylor is an author, motivational speaker, an autism advocate. Her YouTube Channel, PLANET POOT, premieres in April and features the hilarious adventures of life with her non-verbal son with severe autism. You can also follow their adventures on Instagram, @geegetaylor

My son, “Pootie” is sixteen, non-verbal, and totally thrives with severe autism.  In the early days, I would have never dreamed that his disability would lead me to my happiest life.  ‘Autism Awareness Month’ should actually be changed to ‘Autism Celebration Month’ in my opinion.  It took a minute for me to get to this place, however.  The first years were filled with navigating the unknown and needing ten times the energy of the average parent, yet operating on ten times less sleep, as my son had chronic insomnia and needed care 24/7. At eighteen months, a team evaluated Pootie and saw a load of red flags for autism (however, they weren’t doctors who could make a formal diagnosis.)  He immediately qualified for every therapy that the agency offered. In one meeting, the course of my life had forever changed.  I went to bed, buried myself under the comforters, and cried until there was nothing left.  I mourned the loss of who I thought Pootie was supposed to be.  He would never work at his father’s firm, never give me grandchildren, and would probably never live independently. It was a bitter pill to swallow.  After forty-eight hours of sobbing, I pulled myself from the cocoon that I had made and paid attention to the mirror. Janis Joplin was staring back at me.  I looked like I had been hit by a truck. I had to get myself together as my mother was bringing the children back home to me.

I walked into the den to find my beautiful son crawling on the floor.  He was short, dark and handsome…with dark hair, dark eyes, and dark skin.  He looked like a baby Elvis.  His face lit up when he saw me.  I immediately felt guilty that I had grieved for those two days.  My son was alive, healthy, and standing right in front of me— needing his mommy to except him for exactly who he was, no matter what the outcome.  At that moment, I vowed to roll up my sleeves and get to work.  I gave myself pep-talks along the way…“Never look back, only look up… Think like a winner; you can do this better than anyone…Don’t question ‘Why?’ Instead ask, ‘Why not?’”  After all, it was an honor to be this child’s mommy.

Pootie was formally diagnosed a few months later.  The doctor determined that he had autism within the first five minutes of observation, as he was so severe on the spectrum.  The years that followed were filled with early intervention, therapies, doctors’ appointments, and special schooling.  Despite all of the advantages that he had been given, Pootie remained very severe on the spectrum.  Yet another tough pill to swallow.  I entertained various scenarios that seemed unbearable—What if he never learned to talk?  What if he remained the lowest functioning in the entire county’s school system?  What if he needed assistance with practically everything? With time, all of those ‘What if’s?’ proved to be true. I felt myself spiraling into a depression from the anxiety.  So, in an attempt to preserve my sanity, I decided to place my focus on what autism gave our family instead of what society imagined that it might take away—because if you haven’t figured it out by now, happiness is indeed a choice that we make.  Celebrating Pootie for exactly who he was became a stress-reliever.  This level of acceptance also made Pootie extraordinarily happy and confident.  I have been blessed with a very affectionate child, but I don’t think it’s been a total accident.  Pootie is the product of positivity, unconditional love, and total acceptance.  He deserves that like everyone else.  He doesn’t only deserve that if he behaves “normally.”

I’ve met a few autism parents who are angst-ridden because they’re constantly focused on the fact that their lives aren’t like every other boring person's walking down the street.  Some of them seem to pity me as well because Pootie is more severe than their children.  I hate their pity.  Pootie is the light of our lives.  Yes, caring for someone with special needs can be hard work—It is parenting 2.0—you’re going to work a bit harder, but the rewards can be even greater.  Once we really started focusing on the joys of autism, we were able to sit back and enjoy our lives more than ever before…Pootie royally entertained us by the way he saw the world…He rode his therapy horse backward.  He ate pine straw whenever he went outside.  He galloped sideways instead of running straight.  He took ten minutes to eat a single M&M.  He ran in place outside whenever it rained (and insisted on doing this while holding a tennis racket for some unknown reason). He tried to sleep between the mattress and box springs every night.  He wanted to wear my Spanx because he liked the squeeze.  He laughed all day while staring at the palm of his hand. He swiped food off of stranger’s plates at restaurants. He constantly made “Ehhhhh-Ehhhhhh” noises, prompting multiple neighbors and passers-by to ask if we owned a goat…I could list a million more. Pootie’s take on life began to actually make some sense to me when I analyzed it.  A perfect example would be his feelings about Halloween.  For Pootie, Halloween involves getting into a scratchy costume, going out into the freezing cold, dark night, and being forced to interact with strangers just for a piece of discount candy. I began to think more literally as he did…why on earth would anyone ever dress up like a duck and take candy from a stranger in the dark?  Many times, Pootie’s perspective was spot on.

In the spirit of autism awareness month, I’d like to share a couple of things that have made a profound impact on my understanding of autism.  There are many things that I could add to this list, but these two stand out.  I once observed a behavioral therapist giving a talk about autism to a classroom of typical school children.   He asked them to pretend that they had a bad tummy ache—but instructed that they weren’t allowed to use any words to communicate this to others.  As you might imagine, the entire classroom of children instantly acted autistically…gesturing, screaming, crying, pulling, and hitting out of frustration.  It was at that moment that I realized that Pootie was one of the smartest children I knew.  He was always finding ways to compensate for his deficits. He was communicating non-verbally…I just needed to listen with more than my ears. Yes, there are times when I have zero clues what he wants, and that’s tough.  But life can be tough sometimes.  If you focus primarily on the struggles, you won’t be living. The second thing that gave me clarity was reading the book, The Reason I Jump, written by Naoki Higashida, a non-verbal boy with autism, considered to be severe like my son. I casually opened the book, not prepared to suddenly understand what my son must have been thinking and feeling for years. The passages leaped off the pages: “Flapping our fingers and hands in front of our faces allows the light to enter our eyes in a pleasant, filtered fashion. Light that reaches us feels soft and gentle like moonlight. "When I’m jumping, it’s as if my feelings are going upwards to the sky.  Really, my urge to be swallowed up by the sky is enough to make my heart quiver…I can feel my body parts really well, too—my bounding legs and my clapping hands—and that makes me feel so, so good.”   “Sometimes I actually pity you for not being able to see the beauty in the world the same way we do.  Really, our version of the world can be incredible, just incredible.”   The book described the child’s extreme appreciation for the beauty in the world, as well as his sadness from feeling that he was constantly disappointing people by not acting “normal.”  All this child wanted was acceptance; for people to just give him the chance to be himself, like everyone else is given.  I never wanted to raise Pootie in an environment where his every move was “corrected.”  Although staying on top of his therapy goals is crucial, Pootie understands that he is more important than mastering goals. In keeping with the celebration of autism awareness, I’d like to send a message to my little masterpiece…   “Pootie, My perspectives on life have changed immensely because of you.  We are all far better humans for knowing you.  I thank God each day that he gave you to our family…we hit the jackpot.  I am infinitely proud of you and can not thank you enough for your gifts of love and autism.  It is a privilege to call you my son.  Love, Mommy.”

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