Sam's Journey to "Reach for the Stars": Sam's Journey Began on December 6, 2000 When He Entered This World Weighing a Whopping 10lbs 2oz along with a Diagnosis of Down Syndrome, Too Many Red Blood Cells and an Atrial Septal Defect (ASD), a Type of Heart Defect

By Mayer, Sue | The Exceptional Parent, February 2007 | Go to article overview

Sam's Journey to "Reach for the Stars": Sam's Journey Began on December 6, 2000 When He Entered This World Weighing a Whopping 10lbs 2oz along with a Diagnosis of Down Syndrome, Too Many Red Blood Cells and an Atrial Septal Defect (ASD), a Type of Heart Defect


Mayer, Sue, The Exceptional Parent


My pregnancy and labor were textbook normal, all my tests came back in the normal range, but everything quickly changed when Sam was born. The nurses were huddled around him; he was put on oxygen and then taken to the nursery for additional care. This is what my husband and I were told at least. I knew something was wrong as soon as I overheard that our pediatrician was on his way. The panic quickly began to take root and rise.

Dr. Montgomery walked in and closed the door; it was at that moment I began to cry and knew that something was wrong with Sam. The doctor's explanation was thorough and complete, but what I will remember is the compassion in his voice, his gentle nature and the time he spent with us and our family to help answer our questions and concerns.

The next 48 hours were filled with tears, medical tests, grief, disbelief (he doesn't look like he has Down syndrome) and uncertainty of his future--uncertainty that we, as parents, could handle all of this. Finally, we were given some hope and were allowed to hold Sam for the first time. I looked at Sam and cried tears of joy and tears of concern. I had wondered during that first 24 hours if he would look at me or right past me. Sam looked directly at me. My husband, Jeff, and I held him and talked about everything we were thinking, good and bad, our hopes and our concerns. It was at that point we started to accept the diagnosis, accept that we could not change it and that we needed to start thinking about how to move on. When I got home, I contacted the Birth to 3 program in our home state of Wisconsin, a program that offers early intervention for children from birth to age 3. I, also, began interviewing clinics and spent hours reading books and doing research on the Internet.

I wish I could say that Sam's first year was uneventful and that everything went as we hoped. Instead, we coped with a lot of respiratory illnesses and found it difficult to keep Sam healthy and out of the pediatrician's office. Sam was hospitalized twice for bronchiolitis and pneumonia. He stopped breathing on three separate occasions, which required him to be put in the intensive care unit (ICU), and we had our first trip via ambulance. We had an apnea monitor installed as well as sleep and swallow studies. Jeff and I got very little sleep because of the need to continuously reposition Sam to assist with his airway through the night. At 11 months, Sam had his tonsils and adenoids removed which helped a great deal. I was concerned that all of his illnesses and hospitalizations were going to cause further delays; I began to feel that the Birth to 3 program was not going to be enough to help Sam reach his potential whatever that potential may be.

I enjoyed working with Sam's therapists and felt they were a group of caring professionals, but I just had a feeling that we needed to do more. I went back to my Internet research and came across a letter written to the parents of children with Down syndrome by Robert J. Doman, Jr., founder of the National Association of Child Development (NACD). In that letter, Mr. Doman told me my child has unlimited potential. I was sure my prayers had been answered. Sam was 18 months old when we had our first evaluation. He was not crawling, he could not chew, and he was also using repetitive body movements, also called self-stimulating, by dangling socks and rocking to and fro.

Our evaluator told us to build a ramp. We did and within two weeks Sam was crawling in a beautiful cross crawl pattern. …

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Sam's Journey to "Reach for the Stars": Sam's Journey Began on December 6, 2000 When He Entered This World Weighing a Whopping 10lbs 2oz along with a Diagnosis of Down Syndrome, Too Many Red Blood Cells and an Atrial Septal Defect (ASD), a Type of Heart Defect
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