December 20, 2022
Take the Focus Off Yourself
My 19-year-old son, Skyler, has severe, nonverbal autism.
Throughout his lifetime, I have spent every waking moment deciphering his body language and nonverbal cues to make the decisions that I felt were in his best interest.
Is he hungry and if so, will the meal selection I make be something he’ll be interested in eating?
Is he tired and if so, should I let him go to bed early even at the risk of him waking up (and forcing us up) in the wee hours of the morning?
Is he sick or hurting and if so, how in the world do I know which body part – externally or internally is the cause of the issue so I can accurately treat it or seek help?
Even more than the physical concerns, I’m weighed down with worry that the mental trauma he’s endured from those outside our home who repeatedly underestimate him and speak negatively about his abilities & intelligence in his presence have impacted his self-worth more than I’ll ever understand.
The list goes on and on.
Admittedly, I thrive on maintaining control in all situations. I’m ridiculously organized, prepared for anything and lack any sense of spontaneity. I believed those traits served me well, especially where Skyler was concerned.
I mean it’s my job to be a strong advocate, speak on his behalf and essentially manage all aspects of his life to ensure nothing bad happens right?
While venting to a fellow autism mom & friend about my frustrations with the lack of day programming, resources and overall benefits for profoundly disabled adults like Skyler, she asked if I would be enrolling Skyler in SNAP (our food stamps program). I quickly dismissed the idea stating that I felt guilty, as if I were taking advantage of the system when I can afford to purchase his groceries.
She replied with a statement that stopped me in my tracks –
“take the focus off yourself and always keep it on your son’s future.”
She was right. How will Skyler secure food, pay rent, utilities, etc… when I’m no longer around to manage the minimal benefits he is eligible to receive?
This is where the role of parent caregiver can be challenging. Up until that moment, I was quite confident that my entire focus was solely on Skyler, often to the detriment of other relationships and my own health. I never wavered in my thinking that all planning I’ve done and choices I’ve made were to support and protect him.
Then came the lengthy self-reflection. With nothing but good intentions, I’ve gone above & beyond to make Skyler’s life enjoyable. Sadly, I recognize that my hovering may have cheated him out of experiences and opportunities to gain more independence because it made my life easier.
By repeatedly declining invitations to events with large crowds and noise, telling myself it was because of the negative impact it would have on Skyler, I can see now that I unintentionally made it more about myself and my comfort level – envisioning the potential shit show filled with meltdowns, stares and embarrassment instead of allowing my son the chance to try something new.
In the days following that discussion with my friend, an opportunity presented itself for us to attend the NCAA Women’s Volleyball elite 8 and watch our hometown #1 ranked University of Louisville women compete. Without hesitation, I let my overprotective mom guard down and said YES!
My husband and I agreed on a plan beforehand that if Skyler appeared irritated or in distress, we would leave without a second thought and try again another time.
As with all my expectations and predictions, Skyler does his best to prove me wrong… which honestly couldn’t make me happier or more proud.
He laughed, clapped, bounced to the hip hop music (his favorite) and never made a fuss even with his dinner routine extended an hour! We made it through 2 of 5 sets and decided to head home to watch the ultimate Cardinal victory on TV.
So, despite being at this parent caregiver / autism mom gig for almost 20 years now, I’ll be the first to say I will never have it all figured out – and that’s okay.
I now have a clearer perspective on what my son needs from me while he navigates adulthood. Putting Skyler in the metaphorical driver’s seat to guide me through the many tight turns and roadblocks life will hurl at us, together, is truly the best place to be.
I learn more when I relinquish control, leaving Skyler’s capabilities and talents a clear path to shine.
Hi Laurie! I also have a 19-year-old non-verbal son (and a NT 17-year-old) AND live in Indiana 😊. I stumbled upon this blog post thru Finding Cooper’s Voice and just want to say that every single word resonates with me and our story. I get it, and I’m right there with you. Hugs to all of you!