I’ve been absent from this page for several months and the truth is, it’s because we are really struggling, and I wasn’t sure what to say.

I’ve wrestled with sharing my raw feelings and not diminishing the ‘hard’ we are experiencing through a silver lining filter out of fear of being labeled a complainer. But the entire reason I started this page was to provide an honest account of parenting a nonverbal, profoundly autistic child (now adult) – every joyful, challenging, exciting, painful and rewarding moment.

So here goes…

For the past few months, we have essentially hit a new rock bottom with Skyler. We are all suffering in silence and it’s taking a toll on each of us – mentally and physically.

This last year, I have been so focused on preparations for the dreaded ‘aging out’ phase, as he is 2 months away from his 22nd birthday, that I never expected all hell to break lose with his body and mood. I always assumed with age would come calmness, no longer needing to use physical aggression to express himself.

But lately, we’ve seen the opposite.

He is incredibly impulsive, hitting everyone and everything he passes. His incessant banging on windows, doors and walls gives me migraines and pushes my patience and nerves beyond their limit. He is no longer sleeping well, and eating has become a lengthy game of tug of war – after each bite (that he actually consumes without spitting out or throwing the food), he forcefully shoves us out of the way and takes a lap around the house throwing or smacking all in his path.

It’s as if something on the inside of his body is screaming and crawling to get out and he has no control to stop it.

My husband and I continue to analyze every situation and reaction, piecing together clues that might solve the mystery of what is making him so upset. Is he sick? Is it a Crohn’s flare? Is he hungry, tired or over stimulated? Does he have any unexplained bumps, bruises or injuries? The list of questions goes on and on with no clear answers.

We are desperately implementing medication changes, but those take time to demonstrate effectiveness. So, in the meantime, we are trying to keep our cool which is much easier said than done.

I am angry, hurt and frustrated that I endure so much pain at the hands of my child and at times find myself wishing for a completely different life.

One without profound autism at the forefront of every conversation or decision.

One where my child can convey his thoughts, feelings and emotions with words instead of acting out, begging me to translate his behaviors and understand this endless game of charades we play.

One where he has independence and is not reliant on me as his forever caregiver.

One where my husband and I don’t take our exhaustion and short tempers out on each other creating distance and a disconnect in our marriage.

But more than anything… I am sad.

Sad that Skyler must suffer quietly every single day of his life because his body betrays him, forcing actions that aren’t his intention.

Sad that Skyler may interpret our irritation or yelling when he hits us or pulls my hair to mean we don’t like him or are mad at him.

Sad that Skyler will live his entire life, never truly seen or heard and completely misunderstood by most of the people he meets.

Sad that one day, Skyler will walk this earth without me – having to fend and advocate for himself.

So, while our household is in the thick of it, more hard days than happy days right now, I’m clinging to the one thing that always centers me in times of struggle.

HOPE!

We will keep fighting until the cause of his discomfort and irritation is revealed and will remain hopeful for a return to our normal.

Seeing Skyler’s beaming smile at the start of each morning, hearing his deep belly laughs fill the room while being wrestled by his dad and watching him bounce to the beat of the radio music while he rides ‘shotgun’ in my car during our long drives to nowhere in particular.

That’s our ‘normal’ and it’s truly magical.

While this profound autism journey isn’t for the faint of heart, I do appreciate all that this unique life has taught me.

Much like Skyler, I’ve been given the opportunity to view the world with a more accepting and compassionate lens.