In my opinion, one of the most challenging aspects of Skyler’s nonverbal autism over the past 21 years is his inability to fully articulate his feelings.
Whether he’s suffering from physical or mental anguish, we are never exactly sure what the true root of the issue may be and thus how to properly help him feel better.
Unlike my neurotypical daughter who easily identifies and seeks help for her discomfort by sharing, “my stomach hurts,” “I think I sprained my ankle,” or instantly letting me know when she’s frustrated, angry or anxious in a particular situation, parenting Skyler requires me to rely solely on gut instinct and interpretation of his body language.
As I always say, it’s like an endless game of charades.
A few days ago, we noticed Skyler’s gait had changed. He was clearly favoring one leg but was still smiling and seemingly not bothered or in pain.
After a full body scan revealed nothing abnormal and moving his joints produced no wincing, we had no clue what was wrong.
When he woke the next morning, not only had the limping worsened but his left hip was heavily bruised and unnaturally protruding like there was tennis ball resting on his hip joint.
I gasped and my heart sank. It appeared that Skyler’s hip may have been dislocated.
We headed immediately to the emergency room for X-rays and throughout the entire visit, Skyler continued to smile. His high pain tolerance has always amazed me, but this was on another level.
He was so cooperative – sitting calmly as the nurses took his vitals, lying flat and holding still during the scans and watching Elmo on Josh’s phone while he patiently waited for the results to come back.
Shockingly, there was no dislocation nor fracture found. The conclusion was significant swelling from an ‘unknown injury’, and we were instructed to give him Tylenol and ensure he rests.
Rest?? That made me laugh out loud.
While I was relieved to know he would be okay, I couldn’t stop my mind from spinning out of control with possibilities for how this injury happened.
That’s the frustrating part of nonverbal autism. If he fell or God forbid was pushed down at school, I’ll never know. If he tweaked his hip getting in and out of the car or while he was on a walk with us, Skyler never alerts us to his pain, so we can never timely address it.
So, while I must accept that I’ll likely never learn the cause of what happened and that moments like these have become our norm, I have a newfound hope because of the incredible milestones that occurred from this incident.
Arriving home from the hospital, I was worried about how to keep Skyler comfortable since I was unsure what movements, if any, exacerbated his pain.
Then the obvious hit me.
Ask him!
I told myself, the worst that could happen is he doesn’t respond, but if you don’t give him the opportunity to try to communicate, you’ll never know.
I grabbed Skyler’s letter board and asked him questions about how I could best care for him. He shared that his hip DID in fact hurt and that despite his smiling & giggles, walking and standing bothered his hip more than sitting. Lastly, he said he preferred sitting on the couch instead of his stroller.
I’m in such awe of this kid.
Although Skyler may never be able to fully describe how he is feeling day to day & moment to moment – anxious, scared, hungry, tired, angry, frustrated, sad or a part of his body is causing him pain, what an incredible breakthrough we had this weekend!
This is just further proof that people like Skyler, who communicate in beautiful ways beyond the spoken word, should never be underestimated.
Patience is a virtue… thank you, my son for always demonstrating for me what that truly means.
