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My Lemonade Moment

This weekend was a new start to my career and the exposure of my private life to outside view and ... possible judgement. I'm a child mental health specialist -- specifically a Play Therapist -- and a mother of two. I believed myself to be an educated therapist, having worked with children for almost 15 years, and yet, 4 years ago, I became educated in all that I did not know. I have never been one to believe I knew all or best, but I knew something was wrong with my own child. He refused -- could not -- sleep. When he did sleep, he would awaken screaming with such intensity it sounded as if someone was killing him. The only way to calm him was movement. We held him upside down and swaddled tight, swinging him while he watched something on the ceiling ... his eyes following ... tick-tock... on a spot above. We wore out 2 rocking chairs. My husband drove him hundreds of miles at night so I could sleep for just 4 hours after 4 days without sleep. Like other parents, we did anything we could think of to help our son sleep. Mind you -- day or night -- when awake, he was happy, jolly, giggly, and sweet. So absurdly so that doctors thought I was a "crazy" mom worried about "nothing." When my son was 14 months of age, I demanded a sleep study after first waiting 6 months to even see a neurologist. During the sleep study, with multiple wires attached to him, my son screamed and shrieked loudly. The technician witnessing the sleep study had never in his 14-years' experience seen a study like my son's in someone so young. Although I felt vindicated by the technician's response, I had to wait another month to see the neurologist in person for an answer. His response was, "well that needs to stop!" I looked at him in tired exasperation and tears -- finally another professional saw what I saw... sleep terrors. Never had the neurologist seen them in a child so young; he had only read about them.

The neurologist started my son on medication. Although I don't like medication, with my knowledge of the importance of sleep, I knew it was imperative to healthy development of the brain and body. Frankly, my personal desperation factored largely in my decision-making; I have an older daughter who also hadn't slept or had "normal" functioning parents for almost 2 years! The medicine slowly decreased the intensity of my son's terrors and, over time, the frequency of the terrors lessened, too. However, with more sleep came the realization that my son's "quirks" were something more. It became apparent that he needed the techniques we used to put him to sleep -- the movement, being upside down, the swaddling. His need became more intense and more obvious.

He needed to be upside down; he needed to be squeezed. At that point, I realized that maybe it wasn't just a lack of sleep for him or me or all of us. It was something more. At this point, his PCP was at a loss and open to any of my suggestions. I requested an Occupational evaluation. The evaluation was magical; having another professional tell me that she had never seen this severity in a child who was not autistic confirmed, answered, validated, and scared me. With this evaluation and confirmation of Sensory Processing Disorder (SPD), a new journey began for my family and for me professionally. My husband and I talked about how no one understood our struggle, we knew we weren't the only ones, and we knew other parents and professionals NEEDED to understand. We needed to share our experience so other families would be supported and SPD children could receive support and have a chance to develop in a healthy way. As a Play Therapist, I understand neurobiology and the power of healthy development and play. I also knew my colleagues didn't know what to look for or what to do when they saw it. This is my attempt to shrink that gap for all professionals that work with children.

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