“My son ‘Pootie’ is sixteen, non-verbal, and totally thrives with severe autism. In the early days, I would have never dreamed his disability would lead me to my happiest life.
The beginning was tough as we spent years navigating the unknown. I was exhausted from Pootie’s chronic insomnia as well as the never-ending doctors appointments and therapy. 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 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 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 accept him for exactly who he was, no matter what the outcome. In 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 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 Pootie had been given, he remained very severe on the spectrum. He was non-verbal, not potty trained, needed supervision 24/7 and was the lowest functioning in his program at school. It was a bitter 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 all of the stress. In an attempt to preserve my sanity I decided to deliberately focus on what autism gave our family instead of what others imagined it might take away…because if you haven’t figured it out by now, happiness is indeed a choice we make. I’ve met a few autism parents who are angst-ridden because they’re constantly focused on the fact 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.
With the attitude of acceptance and gratitude we were able to sit back and really enjoy our lives more than ever before. Pootie brings more to the table than anyone I know. He royally entertains us each and every day by the way he sees the world… He rides his therapy horse backwards. He eats pine straw when he plays outside. It takes him ten minutes to eat a single M&M. He likes to wear my Spanx because he loves the squeeze. He laughs all day while staring at the palm of his hand. He swipes food off of stranger’s plates in 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. He holds an ice cream cone by the ice cream instead of the cone…Pootie’s tastes are simple: he loves the ladies, Starbucks, French cologne, spatulas, Mardi Gras beads and zucchini bread.
Celebrating Pootie for exactly who he is has also become a stress-reliever. I’m not constantly trying to correct his every move. His therapy goals are crucial but at the end of the day we accept him for exactly who he is. This gives him extraordinary confidence and happiness, which I feel is lacking in so many children. 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 like 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.
I once observed a behavioral therapist giving a talk about autism to a classroom of typical school children. He asked them to pretend they had a bad tummy ache—but instructed they weren’t allowed to use any words to communicate this to others. As you might imagine, the entire classroom of children instantly acted autistic…gesturing, screaming, crying, pulling, and hitting out of frustration. It was in that moment I realized 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 clue 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.
In the earlier years, I would have never dreamed Pootie would become a little social media personality who inspires so many with his joyous take on life. Maybe our lives aren’t ‘normal’ but I never cared so much about being normal anyway. I want a more interesting life. My son delivers in spades. 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 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.’
Although April is Autism Awareness Month, I propose it be changed to ‘Autism Celebration Month!”
This story was submitted to Love What Matters by Geege Taylor. She is an author and an autism advocate who is passionate about challenging the negative perceptions of those living with disabilities. She lives in Georgia with her 16 year-old son with autism (Pootie), her daughter (Harper), and her Westie-poo (Oliver). To follow the hilarious adventures of Pootie, check out her Instagram here. Their Youtube begins on April 15 at 8 p.m. Do you have a similar experience? We’d like to hear your story. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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