It all started with the screaming. You might call this a temper tantrum; all kids have them, right? My older girls experienced them. I had witnessed them as the oldest of five children myself - and okay, I may have thrown one or two as a child. But for my youngest daughter Addison, this was more than a temper tantrum. Her struggles, her challenges, her difficulties all began with a scream.
I remember her first six months of life as relatively easy. She slept well, took to a bottle and to our family with ease, and was an overall healthy baby. Sometime after this, it all changed. Addison was waking up frequently during the night, often screaming until picked up. She was constantly undressing herself, whether at home or in public. She couldn’t stand to be still or to be restrained, often escaping her car seat while the car was moving or being placed back in a time-out so much that I was exhausted. Her voice was LOUD even when she was happy. New environments and changes were much more challenging than I remembered being with my other girls. She was the pickiest eater, often forgoing eating all together. So many things that I am probably forgetting or have repressed in my memory because it was all hard.
We attributed it to sleep regression, differences in children, differences in learning or personalities, moving to a new house, changes in diet, and any other reason we could think up. But there was always a nagging feeling that something was different.
Our Breaking Point
It wasn’t until Addison was over two years old that things came to a point. We are a military family and had moved to Italy earlier in the year. My husband also deployed to Afghanistan, which left me with three young girls in a foreign country. The rapid changes in a short period of time only made Addison’s behaviors and emotions more difficult. I could not leave her with babysitters or friends because she would scream and throw temper tantrums. Trips to the store were nearly impossible since she would either undress herself, scream and cry at me, or physically run away. The looks and judgment I received from other parents was almost as difficult. I spent so much time trying to help and to understand her, to the disadvantage of her sisters.
I started and ended every day feeling more frustrated and hopeless than the last. With the urging of my mother and the contacts from a friend in the medical community, I took Addison to be evaluated at EDIS, an early developmental intervention clinic available through our healthcare clinic. I went in crying and convinced that the doctors would find nothing. As much as I wished for nothing to be wrong with my child, I was afraid this would mean that I was just not trying hard enough. I was afraid that Addison’s life was going to be challenging and that I would be powerless to help her. After a few visits with occupational therapists, pediatricians, and an ENT specialist, we were given a diagnosis - sensory processing disorder.
Sensory Processing Disorder: Say What?
What a relief! I was prepared for the worst and given…what was I given? I had never heard of this until that moment.
According to the Star Institute, sensory processing is the way that the nervous system receives senses and interprets them into responses. For someone with sensory processing disorder or SPD, the senses are interpreted differently and to varying degrees of pleasure, discomfort, and even pain. In a more formal definition, senses are input and/or output in atypical ways. One therapist explained it best this way: imagine feeling a soft feather brush over your skin. For Addison, this may feel like nails instead of a soft touch. Nothing about Addison’s mind or body was wrong; it just processed things differently.
Suddenly, it all made sense. She would yell and scream not just because she had an underlying ENT issue but because everything sounded loud to her. Children learn to speak by what is heard, and because she couldn’t hear everything well, this caused her to have a speech delay and difficulty in communicating effectively.
Addison would undress constantly because clothes had a different sensation for her. She would throw tantrums and scream over new environments and changes because they were more frightening to her. She was waking up in the night because light was brighter and more distracting. She would not eat many foods because the texture was too unappealing to her. It was a big CLICK in my mind!
Moving Forward with Hope
From that day, my eyes were opened to a new world of occupational therapies, specialists, and interventionists that would change our lives. There would be many days to come of triumphs and struggles as we worked to develop coping strategies and tools for Addison. None of it was easy, and she still has to work hard at nine years old.
However, this diagnosis of sensory processing disorder gave us hope for her future. More than anything, it reassured me that our lives would be a little more challenging but infinitely more interesting as we raised Addison. SPD is only a part of her life and ours, and we would not trade Addison or her mind for anything.