Our Son's Autism Story

What they don’t see is the rollercoaster. What they don’t feel is the love.

[This is a transparent moment. I pray it helps someone else.]

Our journey with our son’s autism diagnosis has been one of peril. Emotional, spiritual, and even physical. If it were up to us, we would let him run through the greenery in the backyard, listen to Audible, and watch marble run while eating cheese puffs in his underoos. However, one must be domesticated (insert eye roll).

A lot of our family members either don’t understand or don’t care. People have said things like, “Parents with autistic kids make their child’s diagnosis their entire identity.” Or, “So what, your kid got autism, get over it!” And my favorite, “Awwwwwww.” So, we are on a don’t ask, don’t tell basis, mostly to protect our peace.

They fail to realize it’s not about identity. It’s about survival. When we first got the diagnosis, I grieved. Not because I was ashamed of my son. Never that. I grieved because, as a mom with a disability, I know how cruel the world can be, especially to people who fall into multiple different boxes.

His father, my partner, said, “It’s not a death sentence.” And he’s right. But at the time, his delivery felt so nonchalant, like the main character in one of those action movies he watches, all calm and detached.

I didn’t get it at first. I was in the thick of emotions. But now, I see he was holding the roof up while I was falling apart. Now I know that was his way of staying strong for us both. Someone had to. I’m kind of a worst-case-scenario type of girl. I run through all the worst-case scenarios until I throw myself into a panic attack (shrug).

When SJ started kindergarten, the school was not prepared. And honestly, neither were we. I’d been through the IEP process before because my oldest son has an intellectual and learning disability. But it had been years. This time, I was finishing my degree program while my youngest started school.

I’d be at my externship and get calls almost daily. “He’s in meltdown mode.” “He had an accident in the bathroom.” “Can you come get him?”

It was a roller coaster. Some days I cried in the car before I picked him up or dropped him off. Other days I held it together just long enough to get home and get a drink (yes, transparency. Remember?).

This year, we may homeschool. Not because we’re giving up, but because he needs support and peace. And so do we.

One of the many journeys within this journey has been around food. SJ only eats certain things. Days are filled with yogurt and cheese puffs. Meat and vegetables get a firm no. He walks around saying, “Shaun want applesauce,” like it’s his own little anthem. Mealtime has been its own challenge, sometimes frustrating, sometimes funny, always part of who he is. We’ve learned to celebrate every bite he takes and to find joy in his preferences, however specific they may be.

I’m not blaming anyone. We didn’t know. No one did. But what I will blame is a system that acts like autistic children and adults are the problem.

They are not. They are beautiful. They are creative. They are radiant. They are necessary.

Without them, the world would be a dimmer place. At least my world would be.

So one day, when my son is all grown up, I want him to know. Mommy and Daddy, aka Bops, love you. No matter what the system says. No matter what society tries to label you. You are everything. You are enough.

And your story was never a tragedy. It was always a love story.

If this story touched your heart, please share it with someone who needs to know they are not alone. To all the parents and caregivers walking this path, your love, patience, and strength are seen and honored. Keep holding on. Keep fighting. Your story is one of love, courage, and unbreakable hope.