I started this blog with a different focus a little over two years ago...how time flies. The point at the time was trying to understand my pull toward various interests and to spend time writing about each of them in a somewhat public attempt to find myself. During that same time period we were just learning that our daughter had "a language delay" (poor comprehension, even worse expression, phonological issues and classic symptoms of echolalia). Retrospect being what it is, I look back at my initial reactions with both amusement and frustration. I was quite upset and worried for her future, but being reassured by the speech pathologist that she would be fine with some time in an early intervention preschool program I waived off my concerns as the over-reactions of a paranoid "new" mom and got on with life. Less than six months later we found ourselves expecting twins, starting a new business, finishing an extended remodeling project, and over-extended in many ways. Our daughter seemed to be making progress with her language, and entered regular preschool as scheduled with her peers in addition to continuing her speech program.
Then, about a year ago - newly recovered from 6 weeks of hospital bed rest and 3 weeks of attending two babies in a NICU - several people started waving the red flag of Autism Spectrum Disorders at us. First we were told that our daughter had sensory integration disorder in addition to her echolalia and language delay. Her social skills were also lagging behind her peers, and we were urged to have her evaluated by a Developmental Pediatrician as soon as possible. After wading through waiting lists and intake interviews we found a doctor with an opening in early June 2008. The doctor confirmed the red flags and suddenly, life came into pretty clear focus. Having always considered myself a dedicated mom, suddenly little else seemed as important as understanding and supporting our daughter, and helping her reach her full potential as a person.
Foundational to this process, in my mind, is the impact of our Christian faith on every aspect of parenting our daughter. Our faith carried us through the challenges prior to her diagnosis and the initial grief and shock following it. Our faith helped us reach out to friends for both practical and spiritual support as we considered various schooling options and sought out social services. Our faith gives us the strength, patience, wisdom, and compassion we need to understand our daughter and her efforts to overcome every challenge that she faces. Our faith is important enough to us that we want to impart it to her, and live it out in front of her in a way that honors the One we worship. So far I haven't found a lot of resources that address the overlap of these two crucial facets of my life, and I realized that there must be other special needs parents out there with similar challenges, questions, concerns, and ideas. I hope this will be a place where the Christian community of special needs parents can convene, and hopefully reach out to the greater special needs community.
One final note for this post - you will observe that I have not mentioned the exact diagnosis for my daughter. For one thing the experts all disagree, and for another I think the entire diagnostic process for Autism Spectrum Disorders is fragmented and inadequate. Beyond that, I personally have decided to not pay so much attention to the labels that try to pigeon-hole my daughter into a certain mold and I focus rather on the specific challenges that she faces - currently: pragmatic language, sensory integration, fine motor skills, social skills, and self-regulation. These are the needs that we can address with therapy, the labels are just "convenient" for people who need to group her into some subset of humanity. Beyond even this, I hope this blog will be a place for people to find answers in spite of whatever labels have been applied to them or to their children. It will revolve around the spiritual aspect of parenting a special needs child, and as I am a Christian it will undoubtedly reflect that perspective, but I hope many of the ideas we'll discuss will be relevant to every special needs child and every special needs parent.
Can't wait to get started...I would love to hear your ideas for things to write about, so comment away!
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