June 1, 2023
Honoring the Challenges of Parenting a Child with Autism
Two years ago we were in the fight of our life. I remember sobbing on the floor of our playroom because I understood for the first time in Jackson’s life how it was safer for some children to live away from home.
I was terrified. Heartbroken. And scared to death we would never make it through as a family of four.
And two years later we are finally letting out the huge breath we’ve been holding for two years. We can finally breathe again.
I am sharing the truth with the encouragement of some amazing moms who reminded me that by sharing we provide strength, and comfort to other special needs parents.
We are currently stuck in a cycle of hard.
I’ve hesitated sharing that sentence because it seems that by saying things are hard people turn it into a competition.
It’s not a competition. Hard is hard my friends. No more, no less. No shame, no score.
Just acknowledging the hard.
Reminding ourselves that we can do this. That our children love us, and need us. And that saying it’s hard is ok, it’s actually healthy.
That being honest means saying I don’t know how I can do one more day, and actually getting up and doing it anyway.
You see my sweet boy who’s seven has autism. He was diagnosed at age two with level two autism spectrum disorder. The level two diagnosis means “requires substantial support”, “ASD lasts throughout a persons life”.
It affects how a person acts and interacts with others, communicates, and learns.
I had no idea what this would mean for the rest of lives in that moment, but I knew it changed everything and things would be hard for a while.
Then we started searching for services, putting ourselves onto waitlists, trying to navigate the care and support Jackson needed to be successful. That was hard.
Sending him off to school. Establishing IEPs. Potty training. Insomnia. Seasons of hard.
Rigid behavior. Anxiety. And then came the hardest for us, aggression.
This is where we find ourselves day after day right now. This is our current cycle of hard. The aggression is heartbreaking, isolating, like we are all screaming for help but nothing comes out.
We learn from the hard, I know that. I also know joy comes after, as you climb your way out, once you reach the other side.
But first we sit here, in a holding pattern of tough behaviors, quiet because sharing seemed overwhelming.
Quiet because we are tired but are so hopeful for a change. We hold our breath more than we don’t, we know that each day is a repeat of the hard day we had before. Struggling to smile through another day because they all seem the same right now, hard.
I know we aren’t alone, I know our hard may be someone else’s easiest day, and vice versa. But what I do know is this, we will make it through, we will come out stronger.
I know that we still have hope, and a fierce love for our amazing boy.
But for now I’m honoring that things are unbelievably hard, that we are exhausted, and that I’m not alone in this space.
Written by Amanda DeLuca of Jackson’s Journey, Jackson’s Voice
