Seen but not heard, learning to find your voice.
I have a daughter. She is just like any other kid. She has a vivid imagination and loves to play. She has a thirst for knowledge and is always asking questions. She is super empathetic and has an emotional intelligence beyond her years. But there is something you might not know about my daughter if you saw her walking down the street. She is living with a disability.
Sometimes disabilities are invisible.
Not all disabilities are visible. We often think of children with an extra chromosome or those that rely on the help of a wheelchair. My daughter’s disabilities don’t present themselves this way yet she is affected globally, from her fingers to her toes. She has had to overcome challenges since she was an infant, but it wasn’t until she was 2 years old that she started receiving therapy services. At age four and a half, she received a diagnosis that opened up a door of resources, answers, and new therapies.
Childhood Apraxia of Speech
My daughter is living with Childhood Apraxia of Speech (CAS). This motor planning disorder is something she will carry with her for the entirety of her life. It will manifest itself in different ways throughout her years. Right now, it means she is in intensive therapy five days a week, learning new skills to help her communicate and perform everyday tasks. Children with CAS have a wide understanding of language, know what they want to communicate, but for reasons unknown the brain has a hard time sending the proper signal for the complex sequencing movements her mouth needs in order to speak.
Give a Child a Chance
If you were to speak to my daughter, and did not know about her disability, you may ask her to speak up. You may ask her to repeat herself. You may think she is speaking another language. You may assume she is mentally disabled. Or you may choose not to communicate with her at all.
But I’m here to tell you that if you choose to move along and not get to know my daughter, you will be missing out on a wonderful opportunity. She is a fantastic kid. She’s the kind that makes sure no one is left out at the playground. She stands up for her friends. She is known for her kindness and joy.
So How Do We Communicate?
Communication is more than the spoken word. We communicate with facial expressions. We communicate using our hands and body language. We can even communicate using technology. We all just need to take the time to find ways to communicate with one another, to slow down, and truly listen.
My daughter is unapologetically her. She will happily repeat something for you. She is creative and can find new ways to express herself, swapping out words and changing sentences. She can even use her iPad, with a specialized software, in order to speak.
A Call for Kindness
My daughter spends several hours a week learning to find her voice. As a parent I have one ask of you: teach your child about children with disabilities and to be friends with them. My child is just like yours. She wants to race, play dress up, and have tea parties. She wants the chance to be her own person and speak for herself. She wants to be your friend.
* Childhood Apraxia of Speech (CAS) is a motor speech disorder that first becomes apparent as a young child is learning speech. Apraxia Awareness Day is May 14th and I wear blue to show my support for my daughter and spread awareness, so that other caregivers can know what CAS is when their child receives a diagnosis. Learn more at apraxia-kids.org
About the Author
Erica is a digital storyteller and marketing consultant with a degree in public relations from the University of South Alabama. An Alabama native, Erica became a New Orleans resident in 2013 when her husband enrolled at the New Orleans Theological Baptist Seminary. During their time in the city they both fell in love with the community, culture, and food New Orleans has to offer. Her eldest daughter was born during Mardi Gras season while living on the parade route and spent her first week being rocked to sleep by the sounds of the brass bands. Erica currently resides outside Nashville, TN in pursuit of medical care for one of her daughters.
Thanks for this article.
My daughter also has CAS.
I wrote this song as a fundraiser for childhood apraxia a few years ago