“You must be the change you want to see in the world”

When you are out in the world, be it at a restaurant, grocery shopping, driving in traffic, or at the doctor’s office, and you see a child screaming and a mother losing her cool and grabbing that child by the arm and being stern: BE CAREFUL BEFORE YOU JUDGE THEM. 

Be careful placing judgment upon others, for you know not what battles they are fighting. 

It has been months since my family went out to eat.

We recently went out for a bite at a local, casual restaurant. Very loud, very kid friendly. Or so we thought.

At the end of the meal, the waitress, who was very sweet, became overwhelmed with her tables. A young man came in and was singing while playing the acoustic guitar, and a very unfriendly table had just sat behind us. Our little one was really struggling, so my husband decided to take him home, and our oldest son refused to leave and stayed with me. He wanted to see the guitar player, but I had to wait for the check.

That was when All Hell Broke Loose.

He started screaming.

The table behind us was in my face, and the large table of young twenty-somethings was looking at me as if they should call DFCS on me for grabbing my son and walking away. My son was screaming at the top of his lungs, and I put my hand over his mouth. At that time, he proceeded to bite my hand, almost breaking the flesh. All the while, the entire restaurant was staring. Let me point out that this hasn’t happened to me in quite some time, and, typically, it doesn’t bother me. This time it did.

As I left the restaurant, I wanted to walk back in and confront the two tables that were staring at me like deer in headlights. I wanted to say something like this:

It isn’t polite to stare, but since you are, let me break it down for you. This is my five-year-old son. He suffers from a rare genetic disorder called Prader Willi Syndrome and autism. Although he may look “normal” to you, I assure you that he is fighting many battles. Before you judge my behavior regarding how I handled my son, you should know this: I only slept for three hours last night. My son is sick, and when that happens, his behavior becomes more than any of you could understand. My husband and I are in the middle of the most difficult financial time of our lives, and I am dealing with my mystery medical issues that seem to elude my doctors. I am human; I am not a robot. I have one child with PWS and autism and a second with hyper-activity and mood dysfunction disorder. I may have looked like a crazy woman to you, but you couldn’t imagine that I have been up handling this since 4:00 a.m. today.

As the parent of a special needs child, we are “supposed to stay calm and not lose our cool.”

I am not perfect, and I do lose my cool on occasion. That night was one of those occasions. I can say this with absolute certainty: Most people in the world could not walk a day in my shoes; most people could not even begin to comprehend what a typical day is for me, let alone these days when things are just not going well.

I write this essay not just for myself. I write for my thousands of extended family members. My family of parents, grandparents, and caregivers of those with special needs, I write for them. I come to you and challenge you to this:

When you see a situation like mine taking place, don’t stare. I challenge you instead to offer a hand. Offer your heart and see if that parent or caregiver could use some help. I will tell you that a smile goes a long way. A smile goes a long way in the heart of a special needs parent in the midst of a crisis with their loved one.

Help me spread the word and please share this blog with all of your friends.

Help me be the change.

Rachel Pastiloff is an author, yoga teacher, amateur chef, special needs advocate, and mother living in Atlanta, GA with her husband and two sons. In 2009, Rachel’s oldest son was diagnosed with a rare genetic disorder called Prader-Willi Syndrome, with a diagnosis of autism to follow. The diagnosis was traumatic and forever altered the course of her life. Rachel has made it her mission to educate the world about children who have special needs and their parents and caregivers. For more on Rachel visit her blog or follow her on Facebook and Twitter.

*Photo by kk+.