As we approach Ally’s 6th birthday this Spring, we also approach 3 years since her official diagnoses.
It was a June morning and we spent hours in a room with her Developmental Pediatrician. She was the third specialist on our journey, our third opinion. And while all three doctors along the way didn’t say that she had Autism (because she was a girl and she talked, yes, even doctors could be that unsophisticated), they all said “Yeah, I can see that” when I followed up after one of them said it. Autism Awareness and Acceptance Day is not about feeling bad, it is about growth, milestones, and understanding.
We didn’t understand why she banged her head against the wall, why she hurt herself, hurt us, held her ears and screamed. We didn’t understand her need to be in control, why she “acted out” or, her expressive language delay (because she talked, she talked a lot and never stopped talking!).
We didn’t understand 3 years ago, despite having been through this before. Because, when you meet one person with autism, like Kerry Mangro has said, “It means you have only met one person with Autism.” No two are alike, even relatives. Three years ago, in the midst of the storm of autism that ripped through our lives, we never imagined seeing the sun again.
But looking back, we see exactly how far we have come. How much behavior therapy, occupational therapy, speech, special education services, and treatments have helped her flourish into the gifted and talented little fireball she is.
People are always impressed with Ally. The way she can engage people, her singing, and her beauty. What we don’t share is how hard it can be between the smiling and singing Facebook posts—the struggles, the meltdowns, the holes in the walls.
Her teachers, her paraprofessionals, therapists, and classmates have seen her on her worst days and to some over the years—that may be all they see. Because this is what Autism is—it is an uneven balance between good days and bad days, between skills and struggles, and it shows both the beauty of humanity and the ignorance.
Today, I am grateful for all of the services and programs that have helped us move forward, even though we sometimes go forwards, then backwards and upside down before we continue going forward. Ally is the best and she amazes me every single day, even during COVID-19 on day 20 of our quarantine.