I am connected to some amazing parents in my community and beyond. Here is a post from one of those parents and she has a valuable message for us all. When we first get this diagnosis, many people assume we parents will be devastated or somehow crushed. When in fact, we often feel something very different, especially when our children have been struggling to be understood. The author of this post has asked to remain anonymous.
The “A” word
My child has the A word, Autism.
My child processes information differently than your child, experiences heightened sensory overload , and has numerous deficits with executive functions. That may sound like a death sentence, a heartbreaking diagnosis to most parents, the label so many families dread.
Yet, I had tears of joy yesterday, when the pediatrician revealed his findings, after nearly 5 hours assessing our child and interviewing my husband and I. Those feelings of validation, relief, hope, and anger came pouring in.
Validation, that our concerns were finally taken seriously, that the daily struggle will become less of a burden with the proper therapies and resources put into action.
Hope, that our child will not fall through the cracks and become just another statistic.
Anger, that our child had to be diagnosed with a specific disorder to receive these wonderful resources and opportunities, yet the other two disorders our child has been diagnosed with, were not enough to warrant the help so desperately needed.
You see, our family has been at this journey for a while, we are tired and weary travellers, but always put on a strong face.
6 years of simply not knowing how to help our child. Without this “A” word diagnosis, life was slowly spiraling into what felt like a dark abyss.
Anxiety that consumed daily life to the point of me barely functioning to complete simple tasks in recent months. Being forced to quit my job, due to increased demands from escalating behavior at school. Days that felt like I had no hope, no support, no future.
Becoming introvert, and pulling away socially after the initial ADHD/ODD diagnosis. I thought nobody understood.
When in fact, I was putting up my own walls to protect our family from the harsh and sometimes cruel comments, that are all too often horrible stigma towards mental health disorders. And finally, no self care. This was slowly eating away at my purpose, my hobbies, my interests, and my life.
Then I had no choice, I became an advocate.
I began attending workshops to educate myself on these developmental disorders. I bought books to broaden my understanding of my child’s struggles. I watched hours of youtube videos, ted talks, and read online articles on Autism, to familiarize myself with what my motherly instinct was telling me.
I worked closely with my child’s teacher and built a strong partnership. I began family counseling. I began building new, and strengthening old friendships with families who are living what we live. I started attending a parent group for children with mental health and invisible disabilities. I began new strategies to handle the daily struggles we face with our child. I asked questions. I stood up for my child’s education. I spent 3 hours preparing and collaborating with my husband for the day when we finally had this burden lifted off our shoulders . The doors of opportunity have opened.
We are not afraid of the “A” word anymore. We are terrified that our son will get swept under the rug and forgotten….