Gina St. Aubin,
For my family, our journey has been a long one. As of today, we have continually pushed for doctors to hear us as we advocated for our son, J. For five years we expressed concern for his complete lack of sleep..for five years. Originally diagnosed with Cerebral Palsy at 9 months of age, speaking his first words early and developing all else on time, short of physical milestones, his lack of sleep (which began at age 2) was blamed on the Cerebral Palsy.
He was treated for “sleep disturbances” with hammers of drugs that did nothing to help him sleep; medications that we were told would knock my 200 pound husband on the floor, J breezed through. He was denied for a sleep study because we didn’t have any concerns for sleep-apnea. In short, we had road blocks from doctors attempting to do their best, but missing the mark by a long shot. We could not accept their answers, their blame on Cerebral Palsy for his actions, his sleep…we knew there was more.
J, in addition to Cerebral Palsy, has been diagnosed with Autism, Sensory Processing Disorder, global Developmental Delays and then finally with Landau-Kleffner Syndrome in April, 2009. Landau-Kleffner Syndrome (LKS) sometimes met as ESES or CSWS, is a rare epileptic disorder that can, and many times does, effect sleep…while doing an unspeakable amount of damage during sleep.
Our journey has been long. It has been difficult. Behaviorally, emotionally, cognitively, there were many times it felt as though we were wasted as people, as a family. We went through our sorrows, and will again…sometime…but overall have come to the understanding that Special Happens. We see our son with eyes of love, adoration and admiration. He has been a light, a teacher, a supporter and our hope. We see him.
My name is Gina. This is not my first blog, but I am proud that this blog will be ripe with hope, support, resources, stumbles and learning with you. My husband, C and I have been married for 7 years in December 2010. We have three children, J, O, and B. And yes, they are my JOB. Today, in 2010, J is 7, O is 3 and B is 2.
Special Happens and all that I put into it does not mean to say that I’m an expert. I am not. I am very nearly an expert on my own son, but even he sometimes mystifies me. I have knowledge is some areas, only heard of others, and have no clue in even more. I am a self-educator and an advocate. I am a parent, possibly the same as you, sharing any information I come across so that we can learn together.