The Rest Of The Story
Every special needs parent talks about the moment. The moment when their heart dropped, their palms got sweaty and their mouth dried out like the Sahara Desert. That moment when their instincts started yelling at them “DO SOMETHING! SOMETHING IS WRONG!” in whatever language it thought you would understand. It is the first of many pivotal moments in the life of a special needs parent. It is our call to action or the ultimate moment of denial.
My moment of awakening occurred in the middle of a crowded bathroom at an outdoor museum. After a morning of outdoor play, it was time for a pull-up change and lunch. At 3 ½ my daughter’s digestive issues prevented us from completely potty training her and so changing tables were still a part of our daily life. Leaving my son with my sister, I opened the bathroom door and ushered my happy little girl into a scene that would change the trajectory of my entire life.
The Unexpected Plot Twist…
We had walked into chaos. The bathroom was crowded and super jet hand dryers were running at random intervals, often overlapping each other. People were talking loudly back and forth to each other and in an instant, my daughter froze. It took me a second to find the changing table, which was inconveniently located in the center of the noise. As I directed her to the table, she began to meltdown. The room came to a halt as I looked down at the screaming and crying mess at my feet. Twenty pairs of shocked eyes focused all their attention on me. I began to sweat and turn as red as a ripe tomato. Realizing that my daughter was beyond reason, I picked her up, dirty pull-up and all, and left the bathroom. Upon reaching the much quieter lobby, she relaxed and within a few minutes was calm again.
When we rejoined everyone, my daughter turned to her aunt and said, “That room was too loud. It hurt me.”
Our day continued on as planned. I changed my daughter behind a bush outside of the museum. I made my sister, who at the time, ran a nature center, promise me to never put loud hand dryers in her bathrooms. But deep down at that moment in the bathroom, I knew something had changed. The milk was part but not all of the problem. I knew we needed help. I knew something was severely wrong. Sounds shouldn’t physically hurt a child.
That experience happened three years ago but even as I write this, my palms get sweaty and my heart starts to race.
The Beginning of the Rest of the Story
After our moment, I once again went to my pediatrician. Upon hearing the newest layer of our story, she sucked air in through her teeth and reached for a pad of paper. Today I know, you don’t want to hear any doctor do that. It is the nonverbal equivalent of ‘that’s interesting,” another phrase I would prefer to never hear leave any professional’s mouth in regards to me or those around me.
Why am I taking the time to tell this story again? Because it is important to acknowledge how far you have come and how everyone stories are different. That day in the bathroom changed everything about our life.
Our journey has made me a better mother, teacher and human being. It has made me think about how I interact with the world in a way I never would have if we had a typical life. It is what brought me back to writing.
Most importantly, it is what set me on my mission to share, support, explore and learn. Please feel free to ask any questions in the comments below or e-mail me at firstname.lastname@example.org I am more willing to share the therapies we have used and found success with on our journey so that others can benefit from what we have learned.