Sophia was my third child. I was an experienced mother. I knew what normal was and I knew a red flag when I saw it. Total meltdowns in public places, always wanting her clothes off, hiding under my end tables, crying because the wind hurt her face, screaming in terror at moving things like grocery carts and wagons, not sleeping more than three hours at a time and a bedtime routine with more steps than a country line dance that had to be done in exact order, were all red flags of “not normal”.
My mind became obsessed with what was causing this behavior. Poison in our well water, a food allergy, a tumor in her brain, a demon in her bedroom, toxic exposure to the paint primer I used to paint her nursery, a baby switched at birth, mercury poisoning from my new found love of tuna and salmon during her pregnancy, or a mental illness passed down from some unknown relative locked away that my family never told me about. Regardless of what “it” was that made her this way, my baby girl was different than normal and I would need to find a way to deal with it.
At first, it was embarrassing and scary all at the same time. I was questioning my own experience as a mother. When I shared my concern with friends and family, most of them wanted to find a way to reassure me that it was “probably normal” and she would grow out of it. How was any of this “probably normal?” As most conversations go, I would bring up a concern, they would blow it off and then spend the next twenty minutes making me listen to how their child did the craziest things as a baby. Frankly, I didn’t want to hear it. To be honest, I didn’t have time. I needed answers, solutions, interventions, anything to help my daughter. These stories didn’t help her or me.
I avoided most of my friends and family for quite a while. It wasn’t a sudden decision I made one day, it just happened over time. Sophia was impossible to take into public anyway so we avoided anything that was not at our house. When people came to our place she would end up upstairs away from them most of them time and I followed her. Over time, we became quite secluded from friends, family and public places. I worked hard to avoid letting people see her meltdowns and catered to her obsessive behaviors just to make it through certain situations. Of course, the more I hid her from the world and our friends and family, the more they had no idea what she was really like.
One day I was dropping off my ten year old son at school and was hoping to pull off a quick stop to the grocery store to get some things without Sophia, now 4 years old, having a total melt down. She could usually handle only one event a day and it clearly needed to be on the schedule. This was not on the morning schedule but I decided to go for it.
“Mommy,” she asked nervously, “we are going the wrong way? I want to go home.”
I let her know we were stopping at the store.
“I want home. I want home. I want home. Pleeeease. I want home.”
Her agitation was building as a sippy cup came flying up to the front of the car. It was a tough decision but I needed to go to the store. No one was available to babysit. Getting out of the car, she grabbed her clipboard, pen and bubble gum. Her knuckles were white as she gripped for something to comfort her as she went into sensory hell for her. She navigated the parking lot carefully avoiding any blemish, painted line or crack in the pavement. As we walked towards the carts she passed the line-up of gumball and toy machines. She obsessively lifted up each metal flap to check inside. I was in a rush. “Mommy, I have to check the machines for candy.” I let her get through all eight machines, never asking for an actual coin. She was searching for order, symmetry, conformity, sameness, routine. Whatever you want to call it, it boils down to sensory safety for her.
I settled her down into the front of the cart and positioned her clip board. “Mommy, it’s cold, it hurts,” she said about the cart. We started in produce and she did okay. She began to get bothered by the cold air and grabbed for a green twist tie to fidget with. “Mommy, I am cold.” I tried to walk as far away from the cereal aisle as possible but could not avoid it.
“Coco Pebbles!” she yelled. We made a quick grab, it was only our sixth box at home and we walked fast before she noticed all of the other gluten based cereals she couldn’t have. She got busy copying letters from signs in the store on her clipboard. Three letters into Pepsi, she yelled, “Wait!” and she made me wait while she finished the other letters. By the third aisle I am realizing I needed more than I thought but Sophia had started to undress in the cart. I calmly pulled her shirt back down and sternly told her to sit down and keep her clothes on.
I had mastered how to predict what would set her off and almost always had a carefully crafted “plan B” in case that happened. If I saw the warning signs that she was “going down” I would find a way to end on a good note instead of a meltdown, even if it meant leaving an entire grocery cart of groceries in the middle of the store so I could leave before she undressed and started screaming. Unfortunately this time, I didn’t have the luxury of leaving the cart, I needed to check out.
“People are looking at me,” she started yelling and half crying. Yeah, no kidding…I need to speed up, I thought to myself. Sophia started stimming by repeating over and over “go home, go home, go home”…escalating now into an angry opera. It is loud and people were looking but it’s better than a full scale meltdown. This, I can deal with. I mean singing is good. It’s better than a naked four year old bolting out of the cart and store.
One aisle later she grabbed the bag of bread from the back of the cart and chucked it down the aisle. As I moved swiftly through the last two aisles and promised her we were almost done, she returned to her clipboard and wrote letters while she sang “ABCDEFGHIJKELEMEOPEEEEEEE…”
We passed the deli on the way to the check out. They were sampling something with a strong smell and she plugged her nose. “That food stinks!” she said obnoxiously loud.
We made it to the dreaded check-out lane. As we waited in line, she wanted out of the cart to see the candy. I took her out. She grabbed a pack of her favorite bubble gum and laid on the floor spinning on her back. I tried to pick her up and she tried to run. I left the lane to bring her back. Holding her, she began to hit me to let her down. I let her down and she went back to spinning on her back on the floor. Again, given the choice between her running away, hitting me as I hold her and spinning on the floor…I’ll go with spinning on the floor. I notice now that most people within my vision are watching and probably thinking something is either wrong with that child or that mother for letting her do that.
I wished my family and friends that all said it was “probably normal” and that she would “grow out of it” were here now in the store with me, watching this all unfold. It’s odd that when you are a complete stranger you can make more realistic and honest observations than when it is someone you know and love.
As we left, she headed one more time to check all the metal flaps on the candy and toy machines. I made the guy carrying my groceries wait until she was finished and he seemed annoyed, but screw him. He had no idea what was going on. Hoping to avoid any other irritants to her, we quickly got in the car and headed straight home.
Before I took the groceries out of the car, I carried her in the house, brought her to her room and got her settled in the swing in her room and all that is comforting to her. ..a familiar movie, dim lights, a gluten-free snack and the long row of hot wheels she left so neatly from that morning. As I left the room she took off her shirt, pants and socks and began repeating the memorized lines from the movie. That will be it for her today. One thing a day.
At this point in our life complete strangers had a better view into my daughter’s true behavior than my family and closest friends. In some ways, I felt relieved by that. It left my daughter some dignity and helped me to avoid unwanted conversations. However, in retrospect, there is a down side to hiding these wonderful episodes from those closest to you. They never saw enough to understand that something was seriously wrong. So, when I made vulnerable attempts to tell them how frustrated I was or how scared I was about her behavior and development, some of them thought I had absolutely lost my mind. It was time to really let the cat out of the bag, so I decided to let them witness a few of these meltdowns and obsessive behaviors for themselves and more importantly for me to be validated as not crazy.
Her behavior was easy to expose and I confess that I knew her buttons well enough to draw out some of her behaviors by pushing the right buttons. I stopped carrying out Plan B escape routes and somehow managed to ask for another cup of coffee as the warning signs of her upcoming meltdown went off. I even took my mom to the grocery store with me one day.
I am not sure what type of reaction I was really expecting, but most of the comments I got were along the lines of “you know, all kids have their moments and tantrums. It’s normal.” I think some of those people actually thought that making that comment to me would make me feel better. As if I could say “Yes, you’re right. It’s normal for a kid to have meltdowns over the smell of the free sausage bites, to the point they are hitting their mother with cans of corn from the cart and chucking loaves of bread across the store at anyone close. And yes, every normal kid goes through a stage of being so afraid of a moving grocery cart that they run frantically out the door into the parking lot.”
Whether it was from lack of awareness and education, denial, shame, or baby-boomer optimism, they did not want to acknowledge that anything was wrong or different no matter what behavior I allowed them to witness. I didn’t have time for relationships with people that didn’t share in my concern. My only focus was to figure out what the problem was so I could start helping her. Anyone that couldn’t at least share my concern and help me was an obstacle. I spent every waking hour observing her, researching on the Internet and doing everything I could to get through another day without falling apart.
Look back advice: You need a partner. Finding one person that authentically understands and cares as much as you do and will help you get back up when you fall, will be the source of energy you need to keep moving forward. This is a long game and it is exhausting and emotionally overwhelming. You need someone that is willing to give and receive little in return. Someone that recognizes their role and will be there to listen to you rant, complain, cry, work out conspiracy theories and send encouraging notes. Whether it is a friend, neighbor or someone in your church or community, find one person. Your spouse is already in this with you whether they are in denial or not. So try to find someone in addition to your spouse. This effort will payoff for years to come. In time, this one friend will see the same fruits of their labor that you will see and you can be proud of the things you accomplished and the quality of life you have improved for a beautiful child.
I am asked very often what I noticed early on with my daughter, now diagnosed with PDD-NOS and Sensory Processing Disorder,” that concerned me. I had kept a journal for years about my emotions through this time period. I decided to pull them out and start a series on my blog about my Sensory Memoirs, my journals of Raising a Beautiful Disaster. Depending where you are in the process, I hope these encourage you, strengthen you to help someone you know who is struggling or validate your emotions. Your feedback would be a helpful encouragement to continue with this series, so please share your comments.