Today, I remembered why being the mother of a child with Down syndrome, apraxia, and Sensory Processing Disorder (currently not recognized by the DSM-V) can be really, really hard.
Every year, I have to buy my children school uniforms, and every year, I swear that I will get a babysitter for my son. However, I convince myself that he needs exposure to people and places in order to gain some tolerance, so I pack him up, and we go with the best intentions.
Immediately upon arriving at the mall, I had a bad feeling. The parking lot was too full and there was water on the concrete. He wanted to splash and run, and I had to hold his hand tightly. He squirmed and fussed. Once in the food court, he chose pizza with relative ease but wanted to hold the floppy plate and drink, which was not a good idea considering the amount of people walking around us. As I spotted an open table, he followed but kept increasing the distance between us, and people hurried in that gap. He finally settled at the table and began eating. A couple a few tables down stared at him as he ate in his typical messy way. When their eyes met mine, they did not smile or frown, just looked away. As he ate, he yelled, which is typical for him when he is happy, which is typical when he has food. People everywhere stared. I asked him to be quieter, but my heart truly didn't care. I like that he gets excited about his food; it would just be nice if people didn't act as though he is from another planet.
After eating, we went into a store and began shopping. The music was loud and the lights were bright. He worked to calm down, and I was proud of him. He laid on the floor a few times and more people stared. My heart raced, and I just wanted my other children to pick out their sizes, try on the items, and finish. I became snippy with them. I became snippy with my youngest. "Get off the floor." "Don't rub your face on the clothes." "Don't unfold that!" "Come here." "Stand here." Don't, don't, don't! After awhile, constant correction made him feel like a failure, and the lights and noise took a toll. More people stared, and my heart raced faster.
Typically, he loves escalators, and it was my fault for assuming he would this time. I got on right before him, but he hesitated. As the distance grew, he called for me and took a big step. He had one foot on one step and the other foot on another. He began to lose his balance, and as I turned to step down, the heavy bags on my arms threw my balance off. I began to fall as well. A woman behind my son caught him, and I gained my balance enough to step down to him. He was laughing, but I felt sick. I thanked the woman and unleashed my fury on the other two kids. "Why am I holding these bags and your arms are empty? Why am I expected to do everything? Hold these bags right now!"
The rest of the shopping trip witnessed a miserable scowl on my face, unhappy children, and a rush to just buy whatever fit and was affordable. I kept muttering "never again", but what am I supposed to do? Never take him places? Never force him out of the safe spot of our living room with his favorite movies, where he can yell, dance, and roll around on the floor with complete happiness?
So many disability posts remind people not to stare. I just read one a few minutes ago, but who am I kidding? People will always stare. Some people will even roll their eyes and sigh. I'm just tired of it. I know typically developing children also have fits, disobey, and embarrass their parents; it is just so much harder when your child gets stared at for things beyond his control. For simply existing as a person with a diagnosis.