I see you staring at me. I feel your judgmental eyes looking at me in the grocery store, the park and at the doctor’s office. I know you see the tears in my eyes as I am running after my child, who is throwing himself around on the floor and screaming. I understand why you stare. I understand why you say rude comments under your breath, particularly regarding my parenting skills. I understand why you roll your eyes or gather your belongings and leave.
I understand because I was you. Before I had children, I too was the person that got annoyed when I heard a crying baby at a restaurant, or a child running through a store when I’ve run in just to grab an item quickly.
Just because I understand, it doesn’t make it okay.
People with autism often look like you or me. It’s not a disability that you can see and most times you don’t notice the person’s poor social skills, until you’ve interacted with them. When Roslynn was born, I was humiliated when she would cry in a store (which rarely happened), because I did not want to draw attention to us, or have people think that I was a bad parent. After a few trips in public with Roslynn, I quickly got over my fear of the nasty looks in public…..until Greyson was born.
Derek and I could often take Roslynn and Greyson out to run errands or to the store for a quick item or two, when he was little. As soon as Greyson began walking, having difficulties with communication and started aggressing towards us and others, we limited how often we brought him out in public.
I remember back in fall when we first began our search for a diagnosis, we took the kids to the Country Barn in Mountville for their outdoor Playland. Roslynn had a great time looking at the animals, playing on haybales and climbing on the old tractors. Greyson however, was content when we allowed him to run around and became extremely frustrated when we attempted to redirect him or pick him up. There were a good number of families at the Playland that day, many of whom had typical children, except for one mother. She was there with her child that had Down-Syndrome. Her child was having a tantrum, similar to the one Greyson was throwing, but as parents walked by us, they stated at us, not the other mother’s child.
I found it interesting and unfortunate that parents had no problem staring at Greyson and I, but when they saw the child with a disability that was visible, they did not take a second look and even redirected their children who may have been staring at this little boy. I felt my heart rate increase and could hear my pulse in my ears- which typically was a sign I was about to cry. I was so upset and angry that my child was being stared at and I was getting the eyes rolling at me.
We ended up leaving shortly after Roslynn got off of the tractor ride, not even one full hour after arriving. I cried the entire way home.
I still have a hard time taking Greyson to places where there are other kids, especially kids without disabilities. I know that I should not allow judgemental parents to dictate my life or where I take my child, but I feel as though I am not totally ready to expose myself to the firing range yet.
This wasn’t the first time that something like this had happened, and I knew it wouldn’t be the last.
Now that Derek and I have mastered the ancient technique of “traveling with kids”, we have learned to tell people exactly how it is and.hpw it should be. We had an unfortunate mishap with a nurse at our family doctor recently, in regards to G not being able to stand still on a scale, or calm himself down once he was escalated. Apparently his crying and screaming was bothering her and because he was in pain (ear infection), he was more irritable than he normally is. He was also one of the last patients of the day. Long story short, the nurses refused to complete a form that was needed for G’s bilateral myringotomy (tubes) procedure because he was “too upset”. This resulted in Derek missing a day of work the next day, just so he could take G back to the doctor to have the nurse sign a paper. I was furious. First of all, how did our family doctor not have his diagnosis on file, and where did they get off treating our son like this? I used my big girl words and wrote a lengthy complaint to the company that recently bought-out our doctors office. I received a phone call from the cooporate office the next day to resolve the situation. Since that incident, everyone at the office has been fantastic and very accommodating to Greyson’s needs. It’s very unfortunate that it took a complaint and a situation like this to advocate for the respect our child deserves.ESPECIALLY by a “professional” nurse that attends to children all day long. But, that’s another thing that this entire process has taught me: you have to be the voice that your child doesn’t have. If you want to survive as an autism parent. You have to constantly advocate for your child, regardless of what roadblocks lie ahead for you. Your child may not have the ability to speak up, so you have to be their eyes, ears and voice to ensure your child gets the very best and nothing less.
A word of advice for those that either have no children, or have a neuro-typical child: please put yourself in the shoes of the parent with the rowdy child. Do not judge a book by its cover- because you don’t know if there is an underlying disorder that causes the child to cry or tantrum. And though my child may not realize that you are staring at them, or understand why it’s rude, I do.
As for us, we are slowly attempting to expose Greyson to more public places. I often joke that if I had a “baby leash” for him, it would be so much easier, but I know this would draw even more attention to us. My hope for the future is that more people will become educated in ASD and grow to be more accepting of those with the disabilities that are not visible.