I remember the very first moment I realized my eldest son, Seth was different. It was something that can’t be erased from the memory banks. Looking back, there were signs that had manifested before then, but nothing so pronounced. I get a lump in my throat as I relive that feeling of panic that pounded itself into me unexpectedly, when I thought, “My god! What is wrong with him?”
The family had gone to Dairy Queen for lunch. Seth was sitting at the head of the table and we were all enjoying our meal. Everything seemed pretty mundane. Until it wasn’t. I remember looking over at Seth and seeing him with his hands clamped firmly over both ears, rocking back and forth. I pulled his hands from his ears and asked him what was wrong. He didn’t respond, but quickly put his hands back over his ears and began rocking again. By the third repetition of this scenario, my heart had begun racing and my thoughts ran wild. “Is he in pain? Is he hearing voices? Is he schizophrenic? Possessed by demons?” (I grew up in a very Christian household where this could be the short answer for any given scenario. So yes, my mind went there.) Shortly after this, he had a meltdown. We left the restaurant.
“…[he] put his hands over his ears and began rocking…”
Several months later we had dinner at someone’s house. Seth was in the living room playing with the doors on an entertainment center, lost in spinning the knobs that were the handles. The owner of the home was ex-military with a very commanding presence and loud voice. He (not so gently) told Seth to stop playing with the knobs. Seth ignored him and continued on. The man then proceeded to shout his name, “SETH!” and still, he continued on, not a jump or a startled expression- not even a hesitation in what he was doing. The man asked us if he was deaf. Another moment of panic hit me. I put together the scenario at DQ (which had played out several other times since), this scenario, and my own partial deafness into a formula that I was sure equaled heartache.
It was then that the flurry of testing began, starting with hearing, then speech, MRI’s, until finally, we had our diagnosis: the Pediatric Neurologist told me nonchalantly, “Well, he has Autism Spectrum Disorder.” I left the office numb and unprepared for the road ahead.
About eight years ago we heard those words, and we’ve walked such a long road in that time. That road has been filled with frustration, uncertainty, sadness, anger, and fear. But those were just the uphill climbs. There has also been joy, bravery, love, determination, pride, and triumph. Days that are filled with speech therapy, occupational therapy, mental health therapy, and IEP meetings. It’s been conquering and preventing meltdowns; learning how to communicate by stepping into his world. It’s been helping him find his path towards self-sufficiency and confidence.
I won’t lie. There were days that I watched him literally beat his head with his fists, or against a wall, chair, door -basically whatever he could find to hit his head with. My heart broke watching him inflict this pain upon himself, and I often wondered if anything I could ever do would be right. My husband and I didn’t sleep because he would try to get out of the house in the middle of the night. We’d have to have a death grip on his hand anytime we were out or he’d run. He had meltdowns. He didn’t talk. It was hard. I cried and got frustrated- a lot.
“I cried and got frustrated – a lot.”
Recently, I shared these thoughts on a public forum and was accused of thinking of my son as an inconvenience or a problem child because he’s autistic. I didn’t dignify the comment with a response then, but I will here. All children are an inconvenience. They wake us up at 2am crying. They smear poop on the walls. They overeat junk food and puke on the floor. They wait until everyone’s buckled into their seats and two minutes down the road before saying, “I’ve gotta pee!” They interrupt snuggle time with the spouse when you just happen to be trying out some of the most awkward and unflattering positions of the Kama Sutra. (We affectionately refer to our youngest son as “the little cock-block”). You never get to poop in peace. But damn, if they aren’t the most loveable little inconveniences! I wouldn’t trade a single second of convenience for them.
Raising children is hard. Raising Autistic children is even harder. But can I tell you a secret? It’s so much more rewarding. You know why? Because the road you walk with an Autistic is a longer one, filled with unknowns, challenges, twists and turns and surprises around the bend. It’s a road fraught with mountainous peaks, but amazing views from the top.
Photo credit: Allicat Photography