“She’s really a nice person, but all she does is talk about her child with special needs. It’s her whole focus actually. And you want to ask her, 'aren't there are other things in this world besides your son with special needs?'”
It was the summer of 2014,and I was pregnant at the time with my third child as I listened to this other mom talk. I nodded my head complacently with nothing to contribute to the conversation. After all, I didn’t know this mom she was talking about and I certainly did not have a child with special needs.
The Summer that Changed Everything
In the summer of 2016, my memory quickly sprinted back to this conversation. My son, whom I was pregnant with during that memorable conversation, had just been diagnosed with Autism Spectrum Disorder and now the realization that I am a mom with a special-needs child hit me. Will people talk about me in this same manner behind my back?
You see, when one has a child with special needs, it DOES become your world. They become the topic of conversations you start. It is your life. From an outside perspective, it looks like the parents of the special needs child is loud and vocal and that they cannot separate the other parts of their life from their special needs child. That's because there is no separation. We are the parents living and breathing this reality every day. Our children becomes the focus of our lives. If I could go back in time to this conversation today here’s what I would say:
If I Could Go Back in Time
That mom, the one you roll your eyes at, the one with a child with special needs? She really needs your support and compassion. This mom needs your understanding and love. I know this is a whole new concept to understand, but try to hear me out. In your life with three highly-achieving children, you will never experience the life of having a child with Down syndrome. You wont feel the pain of isolation when your child does something inappropriate in public. Please try to understand that she is advocating daily for her child because if she doesn’t, no one else will. She knows what an uphill battle it will be for him for the rest of his life. As a loving mom, she wants people to understand that her son is really not that different from everyone else, though he carries an undeserved stigma. This mom knows when people stare at her child. She knows that she must advocate for him every day of her life. And when “all she talks about is her child with special needs,” she is doing it because she wants him to be treated with love and respect.
You see, being a parent of a special needs child is not easy. Our children have a hard time connecting with others. Many times they lack social skills and have a hard time reading body language. Sometimes they don’t understand sarcasm or humor. They might have difficulty with connecting emotionally with others. It is hard to see through someone else’s eyes, but when we try, we understand on new levels, we have fresh perspectives, and we become more tolerant and kind.
The parents of children with special needs will always advocate for our children. This is why we write books, become public speakers, start movements, create campaigns and manage Non-Profits. Our children drive us to become better versions of ourselves. We will never stop talking about our children. We are a proud group of people in a select category called upon to change the world to welcome our kids with love. We will never, ever apologize for that.