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Updated: Oct 5, 2023

Tula’s favorite thing to do was to read...not really read but flip pages for hours, while Thalia would pretend to read and turn the pages appropriately. When someone walked into the room, Thalia was always curious and would greet people she knew. Tula wouldn’t even turn around, not even when her name was called. My whole family could walk into the door and she wouldn’t stop flipping pages, while Thalia would run straight into their arms. Tula was detached…she felt foreign...even to me. From one to two years old she never wanted my attention. She liked to eat by herself but only crackers, cheese and yogurt. She was thin with a distended stomach with dark bags under her eyes, eyes that made little contact with anyone. She may look at you for a split second and look away, or she’d look at you with her face turned right, peeking out of the corner of her left eye, as if she didn’t want to be seen.

People would assume she wasn’t aware of what was going on around her, but she could hear everything at all times. She showed overstimulation when she was overtired or when people were over. Thalia would sometimes get overstimulated as well, but not to Tula’s extent. When we would have a playdate over, after about thirty minutes Tula would start spinning around until she fell on the floor screaming. Sometimes she would pound her head on the carpet, or wildly flap her hands. Whenever she started spinning, I knew I had to get her out of the environment quickly.

I will never forget being at a dinner party with two other couples and their children, who were the same age as ours. Tula was acting fussy, crying in her high chair. One of the dads looked at me and said “Can’t you control your child?” Feeling like we would ruin any get-together, we stopped going anywhere. Family members didn’t want to babysit and we couldn’t afford a sitter. I was too worried about leaving Tula with a sitter anyways, so for a few years we rarely left the house. But the tantrums got worse. And other behaviors like the hand flapping and spinning increased with frequency and intensity. She would tantrum for no reason. Her sister would throw a tantrum if she didn’t get her way, but Tula would start screaming while crossing a street with her hand in mine, or while reading, or while watching a Baby Einstein video. I remember researching online to learn the “normal” number of tantrums per day, because many days it seemed she was screaming more than she wasn’t. Her verbal repetitions were not going away like the pediatrician said they would. I would ask her a simple question such as “Do you want some milk?” and she would either repeat the question or go on about Mr. Noodle, a sesame street character.

I finally figured out that some of Tula’s tantrums were due to hypoglycemia, but was puzzled why her sister would eat when she was hungry but Tula needed to eat every two hours or fly into a fit that was hard for her to come out of. She would often turn down the food that I offered her and I had to chase her around the house all day in fear of another hunger induced screaming episode that lasted an hour, but she never wanted to eat! I was in total apprehension of taking Tula anywhere since I knew she would cause a scene. She couldn’t sit for more than a few seconds so I always had to feed her while she was walking around. Her language was delayed. People would ask her her name and she would either ignore them or say “Thalia” because that’s what she’d recently heard, often using a singsong voice when responding.

Thalia, while developing on pace, suffered from chronic vaginal yeast infections. I kept returning to the pediatrician, who constantly prescribed creams. I always followed his orders but never stopped to ask why this was happening.Tula had horrible cradle cap so thick we had to use a toothbrush to scrape it off (and baths were hard enough because she threw a fit when water touched her head). She also continued to have cradle cap until she was five years old. Once again, at this age I didn’t question why. I assumed all babies have cradle cap and that for some reason Tula had it much longer than most.

The girls were enrolled in a preschool for two year olds one morning a week. Just getting Tula there was extremely difficult and I would oftentimes need suckers to bribe her to get in the car. Other times it was a knee to the chest situation buckling her in the car seat. Thalia sometimes cried when I dropped her off but when I returned a few hours later, she was happily playing with the other kids. Tula would be in a corner by herself or holding on to the legs of a rocking chair to calm herself. Then she was off roaming the class for no particular reason. If someone talked to her, she again needed to look out of the corner of her eye, never straight in anyone's eyes. She knew a few phrases that she'd repeat incessantly in her odd singsong voice.

But she wasn’t afraid of anything. My parents took us to California for spring break and Tula would jump in a pool whether someone was there to catch her or not. Relaxing vacation? I don’t think so. We dined at a restaurant and after a frantic meal she took off in the middle of a busy street. No one in my family could get to her fast enough, so the host ran out and saved her life. On the playground, she would be sitting on the outskirts trying to stuff rocks or sticks in her mouth, hurling herself head-first down the slide, or begging to jump off heights way too high for her. She was fearless, and I was more anxious by the day. These last two years had been the hardest of my life and I was beginning to think it wasn’t going to get any easier. I kept trying to convince myself she was going to snap out of it. I had always said to myself, “Anything but autism.”

© Copyright A Journey Off the Spectrum 2021

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