"Hey, what grade is your son in?" It's a simple question. Yet, every time I’m asked, I find myself hesitating, mentally recalculating. You see, academic progression for our kids with severe disabilities doesn’t fit neatly into the traditional boxes. Every grade and year is a chapter in a uniquely woven story, and my son’s narrative is no exception.
The Gift That Is My Son
First off, let’s be clear. I absolutely adore my son. He is, unequivocally the shining star of my universe. However, let’s not tiptoe around the fact that autism is a disability. But while it poses challenges, it also shines a light on the extraordinary humans who rise to meet them—my son, the teachers, the paraprofessionals, specialists, nurses, and all those incredible souls in the background who often don't get the applause they deserve.
School Days: More Than Just Books and Learning
Instead of the traditional academic subjects you would expect a 16-year-old to be studying. My guy's days are filled with very simple literacy and numeracy lessons, speech and occupational therapy, and life skills such as baking and doing the laundry
One of the biggest blessings we have is our location. We reside in an area where schooling isn't confined within four walls. The community is an extended classroom. From maneuvering public transport to the mundane yet enlightening experience of grocery shopping, my boy learns life skills that textbooks can’t teach. And, of course, there are those delightful pit stops at Dunkin' Donuts. Speaking of these community outings, I'm constantly amazed by how many people recognize my son. He’s like a local celebrity! And as his mom, I am thrilled to see him acknowledged and greeted, reflecting the community's embrace.
Early Intervention and Learning the Ropes
Let’s rewind a bit. My journey with my son’s education started when he was just three. He entered the early intervention program in the public school system. Young, hopeful, and perhaps a tad naïve, I was all about the Individualized Education Program (IEP). I devoured articles, those heartwarming tales of children "overcoming" or "curing" their autism through rigorous therapies or specialized diets. I clung to every word, hoping that maybe, just maybe, the next therapy we tried would be the game-changer. But as the years rolled on, the rose-tinted glasses began to fade, replaced by a clearer, more profound understanding. I learned the art of resetting expectations. Rather than molding my son to societal standards, I embraced him for the brilliant, unique individual he is. Yes, progress can be glacially slow. There are days of excitement when a new skill emerges, only to seemingly evaporate the next. It’s the roller-coaster of autism parenting—one step forward, two steps back.
Home Vs. School: A Tale of Two Worlds
For instance, the updates from his teachers often paint a picture of a proactive student. In school, he’s the master of his speech device, forming simple sentences to communicate. But at home? That same device turns into a one-word command center, with my son (the commander-in-chief) issuing directives to parents (aka his loyal subjects) until we hop to it.
A Decade Plus of Autism Parenting: My Takeaways
Thirteen years into this incredible journey of parenting my profoundly autistic child, if there’s one pearl of wisdom I could share with fellow parents, it would be this: Relax. Breathe. Celebrate the now instead of getting lost in the labyrinth of what-ifs and what-nots. Revel in the little victories, the tiny steps forward. Most importantly, enjoy your child. Every giggle, every quirk, every moment.
The future is uncertain for all of us. But instead of dreading the unknown, let's cherish the known—the present. Let our children be their authentic selves, and let's join them in their world, even if just for a while. Because in that world, amidst the challenges, lies pure, unfiltered joy. And trust me, it’s worth every second.
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