My middle child is non-verbal, 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, 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 got 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. Her autism manifested as a toddler, and now they’re even catching autism earlier than when she was diagnosed.
Being told that your child has autism is not an easy pill to swallow. Even when you might be expecting it. But it’s not the end of the world, even if it may seem like it at the time.
Here’s my story.
She was born six weeks early, I mention this only because in New York State, this just qualified her to begin observation in the Early Intervention Program, 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, 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 had seen it in other children when I worked at the daycare center.
But it still didn’t prepare me for what would happen next.
I can still remember sitting in the office of the developmental pediatrician in 2003 shortly before her 2nd birthday, answering questions diligently and watching my precious B go through evaluation after evaluation. She wasn’t struggling per say, but my stomach was in knots and I was so anxious to just get it over with. 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. Every last hope and every last wish that I had envisioned for her, from simple mundane things like playing pretend and dressing up to more elaborate schemes of grandeur; all of that was gone.
Gone up in smoke, seemingly everything from those four little words: exhibiting signs of autistic disorder.
Those four words changed my life.
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.
Yes, I felt so much guilt in the first years but I’ll cover that elsewhere.
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, but instead she would begin attending preschool for special needs children. That was also rough in the beginning going from being at home with just me and her team of therapists coming in. Now she was in a more formal, structured setting. And while it was necessary and needed, the initial transition was still difficult. She was still my B, the same mischievous, playful, and loving child I always knew.
But now, we had a word for her quirks and personality blips. We had a word that would help us to understand her better. We had a word that I would come attached to. We had a word that despite it’s negative connotations, would connect me to numerous others.
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.
This post was originally posted on August 5, 2014 and was updated on February 23, 2016.