For approximately 19 years, I have been slapped and hit daily.
The culprit…my 21-year-old son Skyler, who is on the severe end of the autism spectrum, is non-speaking, has global motor difficulties and suffers from Crohn’s disease.
He uses physical contact as his primary method of communication.
We’ve tried every tactic shared with us – redirect, ignore, tell him no or use phrases like ‘nice hands’ while we smile and act unbothered, but nothing works.
It seems the aggressiveness and repetitive slapping he inflicts on others results from equal parts stimming and an unbreakable habit at this point.
From the moment he wakes up until the moment he returns to bed in the evening, everyone in his path endures the brunt of his forceful hands.
I certainly don’t blame Skyler. I can only imagine the frustration it would cause if I were unable to verbally express what I liked, disliked or wanted for the entirety of my life – all while my body betrays me.
It sometimes feels like we are playing an endless game of charades.
While I attempt to figure out what he wants or is trying to tell me – annoyed with my inability to read his mind – the hitting gets harder and the look on Skyler’s face becomes more desperate.
As fiercely as I love my son and know that most of the behaviors are out of his control, I sometimes can’t avoid getting angry and screaming through my tears for him to stop hurting me.
“Don’t you understand that I’m trying to help you? It’s not okay to treat your mom this way!”
It’s as though I’m in an abusive relationship, but I can’t pack my bags and leave. I’m Skyler’s forever caregiver and there is no one else willing to apply for this job.
The look of shock and sadness on Skyler’s face immediately makes me regret my tone and harsh words launched in his direction. I immediately apologize and in a much calmer voice explain that my irritation comes from a place of worry and concern.
I fear that participation in adult day programs, community events or him being paired with respite support staff (if we are lucky enough to find any of those things) will be severely limited or not an option due to his ‘aggressive behaviors.’
With him aging out of most services in 8 short months, I’m already in panic mode.
I tell Skyler that I want him to have a fulfilling adult life surrounded by a large village of people who love and support him long after I’m gone.
But that likely won’t happen if he can’t find a more acceptable way of communicating his needs.
Our eyes locked, Skyler focused on my every word, I repeatedly remind him that none of this is his fault. I know he tries to quiet and overpower the impulses brought about by autism. Lastly, I promise him that I’ll work on my patience and may consider purchasing a padded suit (like those K-9 trainers use) to soften the blows, which made Skyler smile and giggle.
It’s at this point, when cooler heads prevail, that this current round of charades comes to an end.
Skyler calmly grabs my hand and leads me to the location of what he was so desperately asking for had his body not altered and complicated the instruction. Mystery solved.
I’m fully aware that Skyler may never be able to stop slapping and hitting as a means of communication and that makes me sad.
Sad that those on the receiving end of his aggression may be quick to dismiss or judge him – never taking the time to get to know the funny, playful, smart and kind side of Skyler that we love so much.
