Today is World Autism Awareness Day. And while many people take this day to celebrate milestones, start discussions of awareness and advocate for inclusion...my feelings are different. I’ll be honest and say not every day is a celebration. Braden was diagnosed at 20 months old, was nonverbal until the age of 4, and was almost 5 years old before he told me he loved me.
He’s been invited to only one birthday party in his 4 years of schooling and the phone never rings for a play date. He still likes printing logos and watching Curious George. We can’t go on many family outings because the sights and sounds bother him...he’s deathly afraid of the ice cream truck so pool days in our neighborhood are out. At almost 9 years old, he still needs help showering and brushing his teeth; he can’t tie his own shoes. We’ve done feeding intensives, sleep studies, social skills, and countless IEP meetings...just to move towards some semblance of “normalcy.” I live in constant fear for his future...and of my own mortality. What does his future hold? What if I’m not there to protect him, care for him? It’s frustrating, exhausting, and heartbreaking.
But....in the midst of this, are those big brown eyes who look at me with unequivocal trust and love. Who has no boundaries for “personal space,” but has begun to hug without prompting and will tell me “I love you, Mom” at moments when I swear he knows I need to hear it most. Autism Awareness is every day in this house...it’s our normal - good, bad or indifferent.
He’s our light. And even on our worst days, he’s the best part of me.