Looking back, it was the perfect storm, and I should have anticipated the challenges we would face that day. Hindsight is 20/20, as they say, but I was trying my best as a mother to four young children to make some Christmas memories. You clearly were not feeling the Christmas spirit yourself, or I suspect you would have demonstrated even an ounce of kindness to a family visibly struggling.
We had just left a school Christmas event. It was an early dismissal day and I learned after the fact that despite there being a school concert immediately after noon dismissal, the children did not eat lunch at school that day. My child was also anxious that morning, and as a result, did not eat breakfast either. He then performed on stage – another anxiety provoking experience. By the time we left the school event, walked to our car, loaded up all four kids, and drove to the mall, we were already at 2pm, 19 hours past my child’s last meal. If you don’t have kids, maybe you don’t know, but low blood sugar meltdowns are a thing. If I had known that his packed lunch would go uneaten that day, I would have brought a snack for the ride to the mall as I frequently do for the ride home from school. I am a planner. I plan sensory activities and snacks throughout our day to prevent my child from becoming dysregulated. That day, I thought we could push through and make it to the mall food court. I was wrong.
After parking in the cold, wet parking garage (it was raining that day, so add wet clothes to my child’s sensory experience), we walked excitedly to the mall food court. We’d have a nice lunch together and then – the big event – we would go see Santa! I knew my child would need to eat before seeing Santa (which he was excited about, by the way). I thought I was being smart. I thought I had planned well. Remember, I didn’t know he didn’t eat lunch at school. I didn’t know he hadn’t eaten in 19 hours.
The mall was packed that day, as can be expected the last Friday afternoon before Christmas. The food court was no different. There were people everywhere. It was loud. There was Christmas music playing in the background. The low roar of the crowd combined with the Christmas music and the smells from each of the different restaurants in the food court and the low blood sugar and the wet clothes and the residual anxiety from the school Christmas performance and the disruption of his usual routine and possibly the anxiety of his upcoming visit with Santa was too much. His previously composed, excited demeanor deteriorated into the worst public meltdown I have ever experienced in his 6 years of life.
I don’t usually get embarrassed anymore when he has a meltdown in public. I am a believer in neuroscience and I understand why he loses control now. I know he’s not being “bad”. I understand that his nervous system has become dysregulated due to multiple stressors and that the best thing I can do is remain calm, provide emotional support, and in the process, ignore the stares and the pointing and the crowd gathering around. But, then, I saw you. While I have experienced obvious judgement, eye rolls, rude comments, and stares, I had never experienced it quite to the extent that you decided to dole it out that day. I don’t remember everything you said or did. The details are a blur. I do remember the awful look you gave me. Quite literally, the dirtiest look I have ever received from someone in my life. I remember the “Oh. My. God!” that you repeatedly gasped. I remember the pointing that was combined with the dirty looks as you pointed us out to your companion that day. I couldn’t make out everything you mumbled to us and about us. I was too busy supporting my child.
I especially remember how you made me feel. Your words and actions were successful that day. You saw me at a low point and decided to dig in and it worked. You made me feel worse than any other person has ever made me feel in my entire life. How does it feel to know that when you could have offered kindness or a helping hand, the actions you chose only added to another person’s pain?
I know what you thought. I know because you said some of it, but I also know because I’ve heard it all before from strangers, family, and even “friends”. You thought my child was a spoiled brat. (Those words come up often for us.) You thought I was a shitty parent. You thought I didn’t know how to control him. You thought he needed his ass busted. Maybe you thought he didn’t belong at the mall or that WE didn’t belong at the mall. That we should leave the mall food court for families with quiet kids. Kids who can maintain their composure in such a hectic environment. Kids who are “well-behaved” and don’t deal with the challenges my son deals with. You thought you knew what the problem was, but here’s what you don’t know.
You don’t know that my child has struggled every single day of his life. You don’t know the things that I have done and the things that I do every day to help him not struggle. You don’t know that, in fact, my life and the lives of my other children revolve around his needs. You don’t know that that trip to the mall that day to see Santa was one of our very few attempts this Christmas season to even try to do the things that “typical” families do for the holidays. You don’t know how badly I wanted to give my children – all four of them – just one simple Christmas outing that they would all enjoy.
You don’t know how far he’s come. You don’t know that he used to have meltdowns that lasted 8 hours per day because he would become so dysregulated with just normal everyday sensations and experiences. You don’t know the work that I’ve put in over the past 5 or so years to help him. You don’t know the hours he spent with Birth to Three. You don’t know how many visits to outpatient occupational therapy he has had and how our life for years has revolved around appointments. You don’t know about the doctors and professionals we have seen and the ones that have helped and the ones that were a waste of our time and money. You don’t know about all the miles we’ve traveled to seek help because there is very little available locally. You don’t know about the money we’ve spent to help him. You don’t know about the sensory diets and the one on one time and the floor time and the collaborative problem solving. You don’t know about special diets and the supplements. You don’t know about the routines and the schedules and the work we’ve done to get him to sleep like a typical child. You don’t know about the tears, mine and his. You don’t know about the worries and the fears that we face.
You don’t know that he’s gone from essentially melting down nonstop to just a few small meltdowns per day to a few per week and then to only having ONE MELTDOWN IN 41 DAYS (not that I’m counting). You don’t know that I -a shitty parent in your eyes- likely spend far more time working with my child than any other “good” parent you know. The fact that he recently went nearly a month and a half without becoming dysregulated, which used to be a multiple times per day occurrence, is proof to me that I am doing something right. That my approach to his challenges is working. Of course, you know nothing about that and only judged us based on your five minute observation.
It didn’t occur to you to offer support, or kindness, or grace, or a helping hand. You only offered cruelty to a mom and child who were already struggling despite doing their best. I know what you were suggesting with your response to our struggle, but your response was no indication of what kind of parent I am. Your response, however, speaks volumes about what kind of person you are.
Sensory House Adventures 