I pride myself on writing honestly about my life – the good, bad and the nasty. As much as I aim to find the silver lining in all situations, sometimes with autism, it’s buried under many, many levels of HARD and refuses to reveal itself!
For the past three months, each day of parenting my 18-year-old son, Skyler who has severe, nonverbal autism has started and ended the same way for me – with tears, anger, uncertainty and self-doubt.
Despite setting good intentions and beginning each day with optimism and a positive attitude, the minute Skyler exits his urine-soaked bed, I’m greeted with a hefty smack across the back or stinging slap to my arm or face.
Determined not to lose my cool, I ignore the aggression and attempt to earn his smile by singing about his warm breakfast waiting downstairs or his fun day ahead at the ABA center. Until recently, that has served as the magic touch to snap him out of the morning grumpiness. But as of late, the intense and irritated look on Skyler’s face remains firmly intact.
Skyler’s now frequent and unexplainable bouts of nastiness instinctively ignited my mother’s intuition and had me fearing the worst – these outward displays must be signs of internal anguish. Since Skyler lacks the ability to communicate what he feels, I must dive into full investigative mom mode – determined to decipher this endless game of aggressive charades.
My first thought was perhaps his anxiety medications were no longer as efficacious as they once were. So, Skyler’s very thorough psychiatric NP carefully and methodically altered the doses and type of med he was taking. Things quickly spiraled not for the better. Skyler’s physical aggression and anger worsened while he also refused to eat or sleep. After tapering off that medicine and slowly starting another, Skyler began sleeping again but the constant slapping and hair pulling along with the refusal to eat remain virtually unchanged. We are currently still adjusting dosages and accepting the fact that a prominent focus on anxiety may not be the answer.
The next idea I had was maybe Skyler’s teeth or gums were causing him discomfort when he chewed or tried eating. I scheduled a dental appointment with the hope of uncovering whether a cavity or other toothache might be to blame. The dentist identified a very loose permanent top tooth, however without doing x-rays and a better examination (which would require full sedation because it takes 3 hygienists plus myself to hold Skyler down for a routine cleaning), he couldn’t be certain whether Skyler has impacted wisdom teeth or molars that are causing him trouble. The earliest appointment for x-rays with sedation is mid-August, so in the meantime, I continue offering food and hope he’ll be hungry enough to finally give in and eat.
Understanding the importance of not adjusting or altering multiple treatments at the same time, I held off on reaching out to Skyler’s Gastroenterologist while we attempted to manage his increased volatility from a top-down approach. Not to mention, I was a bit hesitant to initiate a new biologic injection to treat Skyler’s Ulcerative Colitis considering the hell his body went through when on Humira. However, I will stop at nothing to crack the code on what is causing this profound shift in my son, so, next up was a deep dive into his stomach and digestion issues.
After speaking with Skyler’s GI, we learned that a more current scope was needed before any new UC treatment could be added, so we booked the first available colonoscopy procedure and are scheduled to fly back to Austin, TX in early August.
Meanwhile, here I sit. Completely out of ideas, no clearer on the cause of Skyler’s suffering and still enduring the daily abuse he directs toward me. I feel incredible sadness that Skyler must undergo continual probing, prodding and trial & error with medicine when it would be so much easier if he could just tell us what is wrong.
I have pure distain for autism these days.
Autism has robbed my son of his voice and his ability to communicate even the most basic needs, wants and feelings.
Autism steals my joy and replaces it with feelings of failure – that I am incompetent and ill equipped to parent Skyler and protect him.
Autism distorts my thinking and makes me question whether Skyler even loves me or knows the sacrifices and challenges I deal with every day to ensure he lives the most amazing life possible.
For me, this is by far the hardest aspect of parenting severe, nonverbal autism. On those days when the constant smacking, hair-pulling and wall banging is just too much, with tears streaming down my face, I scream to Skyler and the heavens, “I DON’T KNOW WHAT YOU WANT! Please help me – point to what hurts, take me to where you want to go, show me what you need!!”
I’m tired. Truly and unequivocally mentally and physically exhausted. My dry, swollen eyes can no longer produce tears. No matter how hard I try to convince myself that Skyler hits me not because he hates me, but to demonstrate how frustrating it is to live with grave pain that his mom can’t understand how to fix, I don’t believe it. I really think he doesn’t like me at all.
The silly, smiling and happy go lucky Skyler that we know and love seems to have taken an extended vacation with no clear sign of when he may return. His body has become a frail, empty and angry shell of who he was just a few months ago and I’m desperate to bring him back.
I refuse to stop trying to break through the communication barrier with Skyler. I will continue guessing, making assumptions and playing a one-sided game of charades with him until finally, he is ‘heard’ and understood.
