Having a child with profound Autism has changed me.
I didn’t realize it, until years ago when my husband said something that pierced me deeply: he admitted he harbored a lingering frustration with how much Brantley’s condition had changed me.
I wasn't sure what hurt more—him openly addressing his frustration with our situation or the realization that I had indeed changed.
But he was right; our situation is hard and I had changed.
The person I used to be vanished as Brantley’s Autism grew more profound.
While other parents watched their toddlers develop play skills and independence on the playground, I saw my son’s abilities slip away with each passing day.
Years later, as other parents are watching their children thrive in various sports and activities, we are immersed in nightly therapies. Instead of perfecting a baseball swing or preparing for sleepovers with friends, we are focused on basic skills, like holding a fork and following one step directions.
This stark contrast makes it clear that my life as a mom to a child with profound autism is worlds apart from most people I know.
It’s a difference that makes me feel disconnected and out of touch with the general population. While I once felt ease in each conversation and social interaction, I now struggle with social awkwardness due to my inability to relate to the lives of others.
It’s not spurred from envy or jealousy, but rather grief.
Grief of our situation.
Grief of the life I had planned.
Grief over how I have changed.
Parenting a child who elopes, self-injures, and ingests inedible objects keeps me in a constant state of vigilance. In social settings, this vigilance means I must keep a close watch on my nine-year-old, always staying within arm’s reach. I often find myself sitting near Brantley, who is securely strapped into his chair, while we watch other adults socialize as their children roam freely.
I thought life would be like that.
After all, I was once full of the same carefree joy that I see in others. But the reality is, that lightheartedness has been replaced by a relentless alertness and anxiety that comes with raising a child with severe developmental disabilities.
I don’t often let myself wallow in these differences. Staying positive is my way of coping, of not letting myself get down.
It’s been almost 9 years since I started to question if Brantley had Autism. Over that time, both my husband and I have had to come to terms with our situation and who I’ve become—a person who bears the weight of my child’s needs with unwavering dedication and love, even as it reshapes the core of who I am.
The reality is, I may not be as social or carefree as I once was, but I am someone who listens without words.
I am an advocate who will go to any lengths for my son.
I am a caregiver and mom who continues to bathe and feed her child long past the typical age.
And years from now, when Brantley’s peers are preparing for graduation, I will embark on guardianship as my son becomes a man — a man who needs lifelong care.
I’m certain that as we travel down that road, I will continue to change. Changes that both my husband and I will come to terms with, just as we have the changes we have faced so far.
I am not who I once was, but I have become exactly who Brantley needs me to be — and that is who I will always strive to be. #autismfamily #autismlife #autismparents #specialneedsparenting
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