How my son with autism played the most important role after our tragic loss

Geege Taylor 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, Ainsworth, her 21 year old daughter and her pooch, Oliver. 

Last February the unthinkable happened. My beloved sixteen-year-old niece, who was the heartbeat of our family, passed away in a horrific accident. The first thing that I did upon hearing the news was contact my son’s caregiver. All that I can remember was sending some kind of text to him saying that Kate had died. I knew that I couldn’t juggle nonverbal, teenaged, severe autism-care with the acute level of pain that I was feeling.

We were not sure exactly what my son Ainsworth was able to understand. I was heartbroken by the thought that in time he would wonder where Kate had gone. She was one of the few people whom he was close to; she was constantly in his face, making him laugh, and pulling him into her world.

What no one expected was for Ainsworth to be the one to comfort a house full of grieving teenagers and family members. He clearly sensed that something was wrong. He allowed his cousin (Kate’s sister) to lie down with him and he proceeded to gently rub her back and kiss the top of her head until she fell asleep, which she so desperately needed. For the first time ever, his overwhelming need to rock his body, jump, stim and shout “Ehhhhh!” had been put on hold. He did this for an entire hour. He then moved into the guest room to comfort my sister who was alone, trying to process the sudden loss of her child. And just as he did with his cousin, Ains lied down and held his aunt for yet another hour. Over the course of the weeks that followed, young Ainsworth continued to comfort our family and countless children who had suddenly lost their best friend. He was also able to make us laugh again. He was probably the only person who could have gotten us to laugh at that point in time when he got caught busting a bucket of BBQ meatballs, several Cokes, and an entire tray of brownies. He had particularly enjoyed the funeral food.

After the accident, my gut instinct had been to immediately get Ains out of the house. I never dreamed that he would be the person who would play the most important role.

I have always been one to accept the worst and hope for the best, which has served me well throughout my journey with autism. But somewhere within that philosophy, I had accepted that my very severely disabled son was only able to understand his own feelings, and not anyone else’s. I was wrong. After our family’s unbearable loss, I was reminded that Ainsworth is always making progress. Just yesterday, I was attempting to take that dreaded annual Christmas photo. Standing alongside his two very cooperative, much younger cousins, Ainsworth jumped wildly and chewed on a sensory necklace like it was his job. I asked for him to stop jumping. He stopped. I next asked for him to take the necklace out of his mouth. He spit it out. Then I asked him to smile. He nodded his head “yes,” and gave me a coy little smile. He cooperated for a full ten minute session. Amazing.

Although he is more challenged than most with autism, Ainsworth continues to surprise us and is doing exactly what God put him on this earth to do. Our lives have been surprisingly made better by what the rest of the world perceives as a bad hand. Sure, it can suck sometimes, but I choose to focus on what’s good about it...my son doesn’t beg me for a bunch of iPhones then crack them in a week, he never fights with his sister, he isn’t messing around with drugs, he’s not running up my credit cards and staying out past curfew. The way I see it, neurotypical kids are a dime a dozen...we’ve been blessed to see the world through a unique lense. We’re royally entertained each and every day by Ainsworth’s hilarious spin on life. Maybe it’s not “normal”...but I never cared so much about being normal anyway, I want a more interesting life...my son delivers that in spades.

Rest In Peace, Kate Jones