The Struggle You Don’t See in a Special Needs Family

My heart is pounding out of my chest. My hands are shaking. My face becomes flushed, and I can feel my eyes start to fill with tears. I quickly walk to my room, close the door, and break down crying on the floor. 

As I sit here with my hands over my face, feeling defeated from another emotionally exhausting day, I can’t help but secretly wish others could see the behind-the-scenes moments.

The hard stuff. The struggles. The sleepless nights. The things that make us uncomfortable to talk about.

I want to have a conversation about the moments that bring a tear to your eye.

Not because I want sympathy or to make you feel bad. But because I don’t want parents and caregivers to get discouraged or feel hopeless when things get tough.

RELATED: From a Mom Raising a Child With Special Needs: Please See Me

Being a parent is hard—whether you are a parent of a child with a disability or not.  We all go through difficult times and are often faced with things out of our control. And that’s why I always try to be respectful and kind.

You never know what’s going on behind the scenes. Behind the highlight reel.

You never know what’s happening in those moments you don’t see.

You don’t see the countless hours of therapy every single week so our son can gain new skills and learn how to do things his peers are able to do.

Things so easily taken for granted. Like communicating. And walking up and down stairs safely.

You don’t see him struggling to hold a pencil and trying to trace the letters in his name.

You don’t see the meltdown that came right before that adorable Christmas photo with everyone looking festive, happy, and full of joy.

RELATED: Don’t Be Fooled by My Photos: Our Family isn’t Perfect

You don’t see the long hours in the middle of the night where I lie with him and desperately try to figure out how I can help him relax or what I can do to help his body decompress from the day. I cover his legs with a weighted blanket, plug in his sensory lights, and gently kiss his forehead. You don’t see the sleep deprivation.

You don’t see the constant struggle between wanting to hide under a blanket for the day and putting on big girl pants and tackling the day ahead.

You don’t see me running after my son as I’m juggling two arms full of groceries, a purse, and his twin brother. 

You don’t see the looks.

The stares.

The comments.

I was really hoping that over the years I would see a major decrease in these behaviors from other people, but unfortunately, I have not.

You don’t see our son in his safe space—his home—where he can let everything out that he’s been holding in all day at school. 

You don’t see the throwing and hitting.

RELATED: Dear Autism Mom, You Are a Warrior

You don’t see the humming, the rocking, and self-soothing.

You don’t see the tears when he’s sick or hurt, and he can’t tell us what’s wrong.

What you see is the perfect photo on the beach and probably think we have it all together. But what you don’t see is the hour and a half it took to get our son into swim trunks and lather him up with sunscreen so he doesn’t burn.

For a child with autism and sensory processing disorder, the sensitivity to certain things can be brutal for them. He doesn’t like lotion or anything else being rubbed onto his skin, so when we have to do it, it’s extremely difficult. 

Have you ever tried to wrestle an alligator? Neither have I, but I’m pretty sure that’s what it’s like when we are trying to put sunscreen on our son. 

You don’t see us planning a week or two in advance for something that might only take an hour. Leaving our house requires a plan, a backup plan, and an if-everything-else-fails plan.

I call ahead. I ask questions.

Do you offer sensory-friendly time for your event? Is your restroom accessible for people with disabilities? Do you have a universally designed changing table large enough to accommodate my son?

I’m sorry ma’am, we don’t have anything like that here.

The planning can be too much and extremely overwhelming for our entire family. By the time we actually leave our house, I’m already exhausted. 

RELATED: Why Special Needs Families Sometimes Skip Sundays

You also don’t see the appointments and hospital stays that have made him regress and leave us feeling anxious, scared, and worried. 

You don’t see my husband and me having late-night conversations when our kids are sleeping and making really difficult decisions that impact our son’s life.

And then sitting together on the couch questioning ourselves if we made the right decision. Should we? Shouldn’t we? Are we doing enough?

And you know what else you don’t see?

A family that gets through all of it together.

A family in the trenches desperately hoping for a better day and believing that every day is a fresh start. 

A family that loves unconditionally and will support each other through the darkest of days.

And a family that will celebrate the good days with laughter and joy.

We are a family filled with love, hope, and perseverance, and we will get through anything life throws our way. 

So the next time you’re scrolling through Facebook and see me sharing another adorable picture or video of my son, please know there is always another part of the story . . .

It’s what you don’t see.