Elizabeth’s Story | Birth to 2½

Elizabeth was born on her due date. My labor was quick and everything was advancing but her size and position ended up sticking us in the operating room with me having my first c-section. She was healthy and beautiful. With the exception of a few rocky first days of breastfeeding, everything was perfect.

When she was a few weeks old, she began having issues with colic. She was very unhappy for two to three hours in the evening. It wasn’t anything we couldn’t handle but I was glad when that ended several months later.

It seemed to us that she was developing normally as a baby. In fact, she was advanced physically, walking before ten months and getting into everything. She was very strong and had great balance. She didn’t have any medical problems.

As a toddler, she was feisty and the only strange thing about her was the way she seemed to not need us. Stephen was always saying how much she was “in her own world.” Her language was delayed but she spoke in this foreign tongue and gave speeches to no one in particular all the time. Stephen was concerned about her lack of real words but I thought she would just catch up once she finally decided she wanted to talk. Some kids are just late talkers so I didn’t worry.

Around 17 months, she went from happy-go-lucky to pretty much unhappy all the time. She just lacked contentment and she would get very upset over seemingly small things. She still didn’t talk. She walked around crying or complaining, and she often looked as if she were searching for something or someone.

From eighteen months to two years, she became unbelievably hard. She screamed ALL THE TIME about EVERYTHING. When she was nineteen months old, her baby sister was born. When my husband brought her and our older kids to the hospital, Elizabeth immediately began screaming. She had a meltdown like I’d never seen. They had to leave…she wouldn’t calm down. When we came home, she was okay about Isabella but she would not touch her, hold her, or have any physical contact. She has had little to no contact since.

When she was almost two, I began doing time out with her in her bed for the screaming, which ended up working because it removed her from the situation. By this point, she spoke about four words. I couldn’t take her to her two year checkup because she was so unmanageable. She was having meltdowns so often that we could barely leave our house; I knew going to a doctor’s office would be a bad idea. I hadn’t yet learned how to help her or understand what was wrong. She has major sensory issues and uses her (very strong) body to thrash around while screaming. This is hard enough to deal with at home, but fighting her in public and/or trying to force her into her car seat was a nightmare.

Three months later, her behavior was under control enough (or so I thought) that I took her to the doctor. They did a preliminary autism assessment and the doctor told me that she wanted to give it three months. She was definitely concerned, especially about her speech and unhappy behavior. Elizabeth was screaming almost the entire time we were at the doctor. I held her as the pediatrician and I talked but she was literally screaming in my ear most of the time. She referred her to speech therapy but the one we ended up going to was not a good fit. I have her on a waiting list to see a different one but I’ve been doing speech therapy at home with her in the meantime and she has made great progress.

Throughout her toddlerhood, she has shown normal to advanced intelligence. She learned a great many things like recognizing numbers, letters, shapes and colors with ease. She loves examining books closely but will not let us read to her. She sees things in her mind that that others don’t, such as exactly what’s on the TV screen in another room based on the instrumental music alone. Her hearing is exceptional and she’s proven it time and time again by how she responds to seemingly quiet or abstract sounds that elude the rest of us.

When I took her back to the pediatrician after three months (which was a few weeks ago) she was still very difficult behaviorally and was only showing advancements in speech, not in reception, social skills or sensory input. The autism assessment showed several red flags; her doctor refers a child for an evaluation when there are two or more so that was a no-brainer.

Her behavior in the last few weeks has improved significantly after making changes to her routine and sensory input, and changing how we respond to her screaming. We’ve all but stopped timeout and instead we talk to her and try to help her through the reason for the screaming. We have to walk on eggshells around her and follow a very specific pattern of behavior ourselves for her to be happy but we are learning.

We have an appointment tomorrow with a pediatric psychologist who will decide officially if she requires an autism evaluation or not. My desire at this point is to be in touch with someone who specializes in children with sensory issues, can see inside the minds of gifted children, and can direct us to the type of interventions that may have the most positive impact on her life.

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