30 Days with Autism, Day 11


April 11th: Autism has taught me that sometimes freedom of speech is a hard fought battle.

“I would like a glass of milk, please?”
“Can I play video games on the Xbox?”
“Mommy, I need help putting my shoes on.”

These are phrases kids use every day. All over the world, would be my guess. For kids like mine, speech is a hard fought battle every day. Each new thing said, or connection made, makes me so proud. Speech, or lack of it, was the first thing we noticed as K was getting older. It was the first thing we brought up to the doctors. When she was a year old and not pointing, or gesturing, to things she wanted, we knew something wasn’t right. When she was 18 months and still not raising her arms to be picked up, we knew something wasn’t right. I vividly remember one occasion when she was 2. She was sitting in the high chair screaming as my husband and I grabbed one thing after another off the pantry shelf in an attempt to figure out what she wanted. For nearly 30 minutes, this went on before we figured out what it was. “Use your words” became a phrase of necessity at our house, a phrase we still use to this day. To try and have a conversation with her was useless. You could ask questions, but you weren’t gonna get a discernible response. She was nearly 4 when her speech finally started to pick up and become semi-normal for age.

Before then, we often heard things like “we don’t understand what she’s saying” and “why doesn’t she talk good” from the kids in her Bible study. We were naive. The doctors told us “she’s just a late talker”, “all kids are different”, “her hearing is fine”. Believe me, I was grateful to hear it wasn’t an issue with her hearing, but why couldn’t she talk? My child who could name any flash card she was shown, but couldn’t form a sentence long enough to ask for a cup of juice. My child who could recite Dr. Seuss books from memory, but couldn’t ask for help in the bathroom. My child… Why couldn’t she talk?

I say “talk” because she understood everything just fine. She was incredibly intelligent, oh she was so bright, she still is. The child is a literal sponge, always so excited to learn something new. It was as if her brain was absorbing everything it could, but couldn’t make her mouth work properly. She understood when we asked her to do things; she could follow simple one step directions. She did her best to communicate with us, but just couldn’t. Even when she had a word down, sometimes they would change. For a long time, she could say the word “cup” just fine. Several months later, “cup” became “puck” and it remained “puck” for nearly two years. For a while, we worried she had apraxia. She knew what we were saying, she just couldn’t reciprocate. It’s the most frustrating thing in the world, having to rely solely on echolalia to understand your child when they finally do start talking.

In the past two years, her ability to communicate verbally has come a long way. After a year in speech therapy, she’s finally within normal range for her age. She no longer requires an IEP at all, but her teachers are continuing to work with her to help her improve her free association. She still relies heavily on her Rolodex on social cues, but you don’t really notice unless you spend a lot of time reading or watching TV with her. Most people don’t realize how precious speech is. Many people on any given day, say the most hateful things to friends, family, and perfect strangers. It’s a shame because there is a whole culture within our society of young children, adolescents and adults who would love the chance just to say “I love you”.

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