Special Needs - Jacquelyn's Story Part 3

Written by jenstate

Jacquelyn’s Story is a series of posts about my daughter who has a neuro-behavioral disorder. You can read Part 1 here and Part 2 here.

Just as Jacquelyn’s behavior began to improve, it was time for her little brother to make his appearance. Kiefer came in like a lion, and he’s still roaring. He was born with a terrible case of acid reflux, bad enough to damage his upper airway and compromise his breathing, an issue we are still trying to sort out almost four years later. This meant terrible stomach aches for our little guy and lots of crying. I had convinced myself that I wouldn’t be unlucky enough to get another child with Jacquelyn’s issues. Unfortunately, Kiefer was born with a different reason to cry… he was in pain much of the time. Poor Jacquelyn was now immersed in noise. All the work I had done to control her environment and gently expose her to offending sounds was unraveling right before my eyes. Jacquelyn’s needs would have to wait. It was terrible timing.

As Kiefer turned four months old we moved to a new town and learned that my husband would be leaving the country for three months. I was to be alone, no family, no friends, with two children who cried all day for very different reasons. Jacquelyn regressed and began to exhibit behavior that can only be described as like “Rain Man”. She paced back and forth, repeating phrases over and over while wringing her hands. For instance, if a neighbor walked by with a dog, she would move as far away as possible and start pacing, “I don’t like dogs, I don’t. I don’t like dogs. They bark.” She would say these words to herself while looking at the ground and pacing back and forth over and over again. She had just turned three years old.

She began to abruptly wake up during the night screaming a blood curdling scream. I would run into her room and she would be standing over her tiny toddler bed, hands over her ears, repeating through screams, “It’s out of order! It’s out of order!” Her favorite Diego blanket would get twisted at night so that she couldn’t read the word “Diego” that was placed in big letters across the blanket. Waking up during the night and reading the word “Diego” offered her a sense of comfort. Waking to find the blanket in disarray was intolerable to her and would send her into a panic attack. I eventually had to take the blanket away and get one with a repeating pattern and no words. There are many more stories… strange trances, staring into space, learning advanced concepts with ease, and weird repeated phrases. Every single hair wash came with a full blown meltdown because she couldn’t stand the feeling of water touching her face, and every time I dressed or undressed her she cried because she couldn’t stand the feeling of a shirt going over her head. All of these OCD and panic behaviors increased as I was nursing her newborn brother all day and night. I spent my days immersed in tears… usually Jacquelyn’s, often Kiefer’s, and at night I cried myself to sleep.

Life continued like this for quite some time. We saw a natural leap in her ability to tolerate movement and sound after she turned four. It was a welcome development, and I cried when she took her hands off her ears and told me she wasn’t afraid anymore. I continued, as much as I could, with my calm but firm approach to dealing with her and teaching her coping skills. She was tolerating preschool and learning to be around other children in a classroom setting. She still had no diagnosis, and multiple pediatricians were no help. I felt like she was ready for Kindergarten, that I had done all I could do for her. Little did I know she needed professional help… how could I know when she had no diagnosis? I kept coming back to the same question: What is it when it isn’t autism? It was then, at just the right time, I received a book that changed our lives. To be continued…

Read Part 4 of Jacquelyn’s story here.

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