August 31, 2023
Dear Moms of Autistic Children
Dear Moms of Autistic Children,
This screenshot I took last year showed up in my memories today. It was in reply to a story I posted on my blog page of a video of my son. He was looping the same question over and over again in bed.
I still remember how bad the message made me feel.
Sometimes I receive messages like this, and they encompass a variety of tones. Some are kind, inquiring when Jesse achieved certain milestones or how we reached them. Those messages don’t bother me at all; I’ve asked fellow mothers similar questions in the past.
However, there are messages like the one depicted that do sting a bit. I am so grateful my son can talk, but that doesn’t mean his lack of communication isn’t a challenge. And I feel like she was saying I should stay quiet because others have it harder.
And still, I kinda get why she feels that way.
Although I’d never vocalize it, there have been instances when I’ve looked at a child on the spectrum who can do things Jesse can’t, or whose autism seems less impactful, and thought, “You’re so lucky” or “Don’t complain, it could be worse.”
I’ve experienced this a million times over, ten times more when mothers of neurotypical children grumble about things their child does that I couldn’t even imagine mine doing, and I’m left grappling with envy inside.
I don’t dwell on these thoughts all the time; it usually comes about when I’m down in the depths of depression or going through a hard time.
I couldn’t live like that all the time, but as mothers of autistic children, we’ve probably all experienced these emotions.
At times, it’s not even always envy, but rather a stark reminder of our current situation. Our place.
While I empathize with this mother’s pain, what bothers me most is the implication that I should remain silent about our struggles.
It’s as if I shouldn’t showcase my son’s specific “brand” of autism, and if I don’t have the hardest journey, I should stay quiet.
If that were the prevailing logic, most of us would just bottle things up. Very healthy….right? Nope.
My son received a diagnosis of severe autism, and although he still exhibits some markers that require significant assistance in certain areas, I am conscious that he doesn’t fall into the category of profound autism. Nor is he what some might label as “high-functioning.”
We seem to occupy a middle ground within the autism spectrum, if such a place even exists. I often describe him as a unique spectrum unto himself.
Just like every individual on this spectrum, there’s nothing straightforward about him. Through writing and sharing our journey, I aim to educate everyone and carve out a space in the world for my son.
My little one recently expressed a desire to drive a car and is really truly beginning to communicate with us at 8 years old. This is the same boy who still adores Word Party and Peppa Pig, harbors anxiety deep within, runs back and forth at the park while vocal stimming, and often sits off to the side while other children play.
He’s the same sweet boy who experiences moments of deep sadness that terrify me when I think of his future.
I’m not trying to pigeonhole my son, but I do wish people would comprehend the importance of embracing all forms of autism through education.
As I sit here writing this,
There’s a mother out there fervently praying that her child will utter a single word.
There’s a mother scouring the internet for a caregiver willing to change a 15-year-olds diapers.
There’s a mother grappling with an undiagnosed toddler’s meltdowns while languishing on waitlists for support.
There’s a mother haunted by distressing reports about her child, desperately wanting to vent her frustrations.
There’s a mother who lies in bed, listening as her child recites state capitals but unable to convey how their day went.
There’s a mother observing her child excel and learn beyond their grade level, yet that child has never offered a willing hug.
There’s a mother tirelessly searching the internet for the one food her child will consume, only to find it perpetually out of stock.
There’s a mother bearing the brunt of her child’s aggression, battered and bruised, feeling helpless.
There’s a mother who must inform her teenage son that he can’t drive like other kids his age due to temperament and reaction time.
There is a mother searching for locks so her child doesn’t run into the street into the middle of the night.
There’s a mother awaiting news about her child’s first invitation from friends, wondering if it’s sincere or a cruel joke meant to hurt her child.
When it comes to being a mother of an autistic child, we each face our own battles. Yes, some challenges are much harder than others. Our struggles might intersect in some areas, while other aspects remain entirely foreign to us. However, we can empathize enough to understand the pain of impossibility.
We’re all acquainted with the flicker of hope followed by the crash of disappointment.
We all know the grief and the beautiful moments of joy.
When all know what it truly feels like to overcome. To work on skills at the most fundamental level and unbelievable feeling of triumph when our child achieves.
The world already has enough voices trying to mute our existence. Almost to erase our children from the narrative because their presence complicates things. Let’s not silence one another.
Instead, let’s uplift each other. Together, let’s advocate and battle the isolation and loneliness that can come with this journey.
Written by Jaime Ramos of Jaime Ramos Writes
