Rewriting the Narrative

Shortly after my first son was born, I knew something was “off.” Our pediatrician dismissed my concerns. She said his constant screaming, feeding difficulties, self-regulation issues, and gross motor delays were simply due to his premature birth. He was “colicky” and had silent reflux. She reassured me that he'd “catch up” in no time.

Though I couldn’t put my finger on what was wrong, this explanation didn’t sit well with me. I knew there was something more to it. I kept voicing my concerns until finally, at my son’s five-month check up, our pediatrician referred us to a pediatric physical therapist.

I vividly remember the drive to the PT eval. I was terrified with no idea of what to expect. Was there something seriously wrong with my child? Would he be ok? Would the PT be able to give me any answers?

By the time we arrived, I was shaking. I managed to hold it together for the first half of the evaluation, but eventually broke down. When I voiced my fears through tears, the PT shared her observations and explained that my son appeared to have “sensory processing issues.”

As a former elementary teacher and therapist who had worked with children with Autism, I was familiar with sensory processing issues, but solely in the context of Autism. The PT explained that sensory processing disorder or SPD can exist separately from Autism; children with Autism have sensory processing challenges, but not all children with sensory processing challenges have Autism. This was the first I had heard of this distinction.

After ruling out other conditions at a second evaluation with a neurologist, we began weekly physical therapy to address my son’s sensory motor issues. He was six months old and I was still drowning in anxiety.

During each week’s session, I’d bombard the therapist with questions: What does it mean that he is having trouble crossing midline? What happens to babies who have difficulty with bilateral coordination? Why does he cry all the time? Why can’t he sleep for more than a two hour stretch? Why does he always wake up screaming? Why are his movements so stiff? Why doesn’t he interact with the other babies at our Mommy & Me class?

At the heart of all my questions was one thing. Fear. Fear that my son was not going to be ok. Fear that he was not going to be “normal.” Fear that his life was going to be difficult. Fear that motherhood was going to be vastly different and more difficult than I’d expected. The fear consumed me.

I worried about my son constantly. The more I read and learned about SPD, the more fear-based questions I had. What do toddlers who have SPD look like when they are school-aged? Do they have friends? Do they struggle in school? Do they get picked on and made fun of? Is my son going to be uncoordinated? How will all of this affect his self-esteem?

Little did my son’s PT know she was going to be my therapist too! I cried every week during his sessions. Until one day I realized that it was time to rewrite my narrative.

Here is my new narrative:
There is nothing “wrong” with my son. He is a deeply sensitive, hysterically funny, intensely curious little soul who experiences the world in a different way than most of us.

Yes, he processes sensory input less efficiently than your typical child, and this can definitely make parenting more challenging. But over the years I’ve learned that each challenge is an opportunity to move out of fear and move into love.

When he withdraws from social situations, I have the opportunity to deepen both my level of empathy and my ability to attune to his emotional needs. When he has a massive meltdown for the umpteenth time in a row, I have an opportunity to work on my own self-regulation and to model how to stay centered in the midst of chaos. When he struggles with transitions, I have the opportunity to slow down and simplify our sometimes over-scheduled lives. When he strongly refuses to try something new, I have the opportunity to suspend judgement and think outside the box.

No, there is nothing “wrong” with my son. He is navigating the world in his own special way and teaching me incredible lessons about love, empathy, and acceptance along the way.

We all have expectations about how our lives are going to unfold. And when things don’t turn out quite the way we expect them to, we have a choice. We can hold onto and lament our unmet expectations, feel sorry for ourselves, and shrink away. Or we can rewrite our narrative, become empowered, open ourselves up to possibilities, and grow.

Letting go of our fears allows us to be present, to live in the moment and fully experience our lives. This lets our children fully experience their own lives because they have an attuned and connected parent. No matter where you are in your journey with your child, it's not too late to rewrite your narrative. Know that whatever your child is going through, you are both going to be ok. If you have been living in fear like I was, I invite you to take a deep breath, turn the page, and start a new chapter.

Do you have a story that needs to be rewritten? What's your new narrative? I'd love to hear from you.


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