The A Word
Shared with permission from Just Another Mom
If you’ve never thought that one simple word could change your world, I invite you to read my story- just one of many where it concerns parents of loved ones on the autism spectrum.
My middle child is non-verbal and severely autistic. She has autism. The A word that I never wanted to think about before she got her diagnosis and the A word that I still sometimes don’t want to hear. It doesn’t matter how I word it- autism, autistic, autism spectrum, classic autism; there are times that I still don’t want to hear it. I say this not because I’m ashamed of her, far from it. I say that because it’s just a part of who she is. Her autism does not define her, but it does explain some of her quirks. Her autism will not go away, there is no cure- and I’m okay with that. Autism is a part of who she is, but it’s not all that she is.
She was born six weeks early, and spent approximately one month in the NICU (Neonatal Intensive Care Unit) for jaundice and low birth weight. Once she was able to maintain her temperature and eat regularly, she was allowed to come home. Because of her prematurity, she qualified for Early Intervention Services through Albany County. Initially, those services were for low muscle tone and to help with fine motor skills. Eventually, she also began receiving speech therapy at home in addition to special education services. Having already been on a similar path with my first born, the revolving door of therapists was nothing new.
She developed somewhat normally given her prematurity, I say somewhat because she was delayed in her fine and gross motor skills, in addition to speech. However, I didn’t think too much of it and thus continued our journey. It wasn’t until B was closer to her 2nd birthday that we really began to notice problems. She stopped making eye contact and then she stopped all signs of speech. Both were pretty tough to take, though the loss of speech in particular for me (as Mama was one of the few things she would say). Eventually, it would be her physical therapist who would suggest getting B evaluated for Autism spectrum disorder. And while I didn’t really want to hear it, deep down inside- I was thinking it.
I can still remember sitting in the office of the developmental pediatrician in 2004, answering questions diligently, recalling moment after moment that at the time seemed trivial, and watching my precious B go through evaluation after evaluation. With each passing moment, I was regretting the words that would come out of the doctor’s mouth, but, at the same time- I desperately wanted answers. Ultimately, she confirmed what B’s physical therapist suspected- sure enough, B was on the autism spectrum. To be exact, the developmental pediatrician told us that B was exhibiting signs of autistic disorder, later we would also associate ‘classic autism’ and ‘severe autism’ with what she had. My heart broke and my dreams were dashed. Gone were thoughts of PTA bake sales, Girl Scouts, school concerts, and graduation days. I didn’t quite know what to expect next, but I knew I was reeling. Even though there was a word for what my B had; I was devastated. I was also furious, angry, sad, and guilty.
But, at least with a definitive diagnosis, we knew where to proceed from there. It was agreed upon (by her team of therapists, myself and B’s father) that we needed to take a new course of action to help B as much as possible. No longer would she stay at home with me and have her team of therapists come to her, but instead she would begin attending preschool for special needs children.
So, there you have it. Our encounter with the A word. Not a bad word, by any stretch of the imagination, but a word that changed my life as I knew it. She was still my B, the same mischievous, playful, and loving child I always knew. But now, there we had a word. The A word.