I have a shadow. Okay, I know everyone has a shadow unless you're a vampire, but I have another shadow. One that moves independently and follows me regardless of ambient light. If you just thought, "Oh, bro's got an autistic kid." You just won the satisfaction of being right! Yes, my autistic child follows me (us) everywhere regardless of what I'm doing.
My youngest daughter is extremely delayed and exceptionally autistic. She's nonverbal and still not potty trained at the age of 5. To say this is abnormal considering her age and sex would be an understatement.
The Onslaught of "Elmos"
She does have a limited, spoken vocabulary, but it is predominantly limited to a few choice words, which she uses to exhaustion (us, not her.)
Oh, what was that? What words does she say, you ask? "Elmo" that's her go to whenever she wants something, and she ALWAYS wants something. She also says more but pronounces it like "mooah". Usually it's just snacks or videos, but it's always something.
Think of her as being the autistic, 5-year-old incarnation of Limos (Greek personification of starvation, hunger, and famine.) Albeit she isn't gaunt and is incredibly well-fed.
This kid will eat snacks all day if she could, and I mean ALL DAY! She is insatiable. And this leads me to the point of this musing: she follows me around everywhere, all the time asking for snacks and videos.
I can't believe I forgot to mention this earlier, but she also asks for the, "Cah". Translated to car. To get the correct pronunciation, just say car in your thickest Bostonian accent.
She does all of this to enforce her will upon us and make us question reality itself because the constant cacophony of utterances can't be real. She is seriously relentless. I haven't counted the number of times that she's said Elmo in a given day, but I know it's well into the hundreds.
In case you couldn't tell, it's maddening, "Elmo, Elmo, cah, mooah..." And there is always more. This heightened state of emotional decline is amplified by the constant fear of getting my balls smashed by her "talker". I'll be sitting in a chair, minding my own business when she'll appear out of the shadows and smash her talker down into my unsuspecting nards in the hopes that she can more effectually deliver whatever message she wants to relay. The only reprieve we get is when we put her to bed, after which we just blankly stare at each other in fearful anticipation of the coming onslaught of Elmos that we know we are going to awake to the next day.
Cultivating a Superpower
To survive this without checking into a padded room, you have to cultivate a superpower. Ours is an extreme, highly evolved sense of patience. Since having our youngest daughter, I have evolved my patience to insane levels; otherwise, I think we'd both have been moved to an asylum. Seriously, nothing tests you quite like a child with a disability. All of you parents out there in a similar situation know exactly what I'm talking about.
The most frustrating aspect of the situation is that we know what our child is doing; she is being driven by impulse and obsession, and it's not her fault. Typical kids do the same thing, except they have the capacity to articulate what they want and the wherewithal to stop when you tell them to (usually).
A child on the spectrum does not always understand the subtle or overt ways that people typically express dislike or frustration. Or, in my daughter's case, the direct usage of the word, "NO". Often when we say no, it seems like she takes it as a challenge to see how far she can drive us to the brink. Think of that schoolyard bully from your childhood, who didn't know when to stop and tortured other kids to excess. It's not like we can mail her to Abu Dhabi like Nermal in Garfield... or can we? Does USPS offer flat-rate shipping for relentless toddlers? Hmm.
My wife, being a pediatric OT, has evolved patience well beyond the normal boundaries of human tolerance. Seriously, her patience levels are, as Gordon Ramsay would say, "elevated." But even our child has driven her to the brink. So, you may be asking how we continue to live like this. It's because of our hopeful understanding of time. We know that this is just a season in our lives, and it will pass. Hopefully.
An Alternate Peter Pan Universe
Although delayed, we see wonderful glimpses of what she will be someday. We know that she will eventually get to wherever and whoever she needs to be, but it's not going to be on our typically understood timeline. It's called neurodivergence for a reason. It's a divergence from everything we, as parents, expect on a preordained timeline. This, of course, is a constant challenge, as most days we just want the torment to end but remain hopeful for better days.
In reality, it could be much worse. She doesn't have any behavioral issues, and she's a generally pleasant kid. We've observed some families with kids who have frequent meltdowns and are destructive. We are far from that reality and instead live in an alternate Peter Pan universe where our shadow is alive and just wants snacks and videos all the time. You know what? I want the same thing, so I can't be too upset over it. With a little patience and time, maybe we can all get those videos and snacks, and one day our resistance to persistence will pay off.
Let me know in the comments what your most frustrating, tear-your-hair-out experience has been while parenting a neurodivergent kid. Misery loves company, especially if it comes with snacks.
Dad out.