RONALD MCDONALD HOUSE CHARITIES OF EASTERN IOWA Fall 2012 Newsletter
Published Twice Annually
What is a miracle? WHAT DOES A MIRACLE LOOK LIKE, FEEL LIKE, AND TASTE LIKE? To answer that you might start by identifying what your expectations are for the situation presented. We, like all parents, naturally had certain fundamental expectations for our daughter, now nearly 11 years old, when we discovered that she was on the way. We expected that she would walk, talk, grow, go to school, join the soccer team, be a cheerleader, and so on. When Adrianna was born with Down Syndrome our expectations for her future changed. Those expectations changed further as time went on and the combination of her specific diagnoses appeared to leave very little room for things like intelligible speech, public classrooms, sports teams, social activities, or even a trip to the shopping mall. In addition to Down Syndrome, she received the diagnosis of apraxia of speech and thyroid disorder. Anna has low muscle tone which affects her ability to walk, talk, hold a pencil, and many other daily activities. She exhibits obsessive compulsive tendencies and behavior issues- mild but enough to send school personnel and others running! We sought medical care and treatment in multiple areas, multiple states, and multiple disciplines trying to find a way to make this child’s life functional, if not “normal”. Many well meaning professionals advised “acceptance” of her apparent limitations and adjustments of our expectations for her of a more isolated, seditary lifestyle. School personnel advised that her lack of intelligible speech, cognitive delays, and behavior issues made her better suited for homeschooling and provided private tutors. NEEDLESS TO SAY, “ACCEPTANCE” IS NOT IN OUR VOCABULARY. Our quest to find answers led us to the University of Iowa - first to the Specialty Clinic and then to the Center for Disabilities and Development. Over the last 2.5 years, Adrianna has amassed an outstanding team of doctors, therapists, and others who haveidentified and worked diligently to identify and address her needs. A few of these special groups include the
Otolaryngology team who patiently work with her hearing loss to ensure that she can now hear clearly; Physical Therapy who helped us to obtain orthotics for her feet and ankles allowing her the gift of movement without pain; Endocrine who monitors her levels so she has the energy she needs to be a kid; and most recently the Behavior Clinic. This special group of doctors afforded us 2 weeks of inpatient evaluation and education to help us, in part, understand the functionality of Adrianna’s behaviors and to identify acceptable alternatives. We have been home 1 month, have implemented the strategies and have noted changes which cause us to pause and give thanks every day. Adrianna, it turns out, is on the autism spectrum. Knowing this allows us to appropriately address the behavior and social difficulties that she has spent her life battling. Like all the other exceptional people at the CDC, we are confident that Dr. O’Brien’s team will continue to work with us to ensure that we have the tools to do that. We cannot adequately express our appreciation and thankfulness for the dedication, kindness, knowledge, humility, and professionalism of all who have worked with us. THE RESULT OF THIS JOURNEY – A MIRACLE! Our child for the first time on Wednesday spent 45 minutes on the soccer field with other disabled children, shin guards in place, exhibiting socially appropriate behavior, running and kicking a ball, following directions. Our miracle! She was happy and successful with a normal everyday thing like a soccer practice. This is what a miracle looks like, feels like, and tastes like - salty tears! THROUGHOUT THIS JOURNEY, RONALD MCDONALD HOUSE AND ITS STAFF have stood beside us with encouragement, patience, hard work and an obvious love for what they do. They have provided the proverbial “home away from home” for our family time and time again. Could we have done all of this without Ronald McDonald House? No. They are part of our miracle! We fully expect that new issues will arise and existing issues will continue but we are confident that the Ronald McDonald team will stand ready to assist in whatever way they can. Our heartfelt thank you as our daughter now stretches her wings and begins to experience for the first time those things which to date she could only watch from the sidelines.
Denise Austin 9. 16. 12