He is known by all of the teachers and students. Due to the interaction with several boys, at different learning levels assigned to the same special class, Jared’s social skills have improved this year. His most recent accomplishment is the completion of lesson 30, story 1, of the Edmark reading program. The Edmark program teaches reading by using sight words. Jared likes sports. He played basketball for the first time this winter and has played baseball with Ridgeland’s Challenger League for nine years. The Challenger League is a baseball league for people with disabilities. Jared is also a member of Cub Scout Troop 51. Jared’s first love is the computer. He is competent with the log on and log off process. He identifies icons and uses the mouse proficiently to access his favorite educational software, games, or to watch TV. However, his ultimate retreat is his backyard swing. He swings, in his own world, for hours at a time. 

Medically, several physicians follow Jared.  Low muscle tone, the lack of motor skills, and poor vision challenge us daily.  Jared receives speech, as a related service, at his school.  Verbally others may not easily understand him, but if in his company for any length of time, you will begin to decipher and communicate with him.  Jared is persistent and likes to make his point.

We’ve positively shared Jared’s life as it is currently. However, there are today and have been many valley experiences, but with God’s grace, patience, our faith, and determination, we persevere. 

On December 8, 1991, our lives changed forever. Jared was born prematurely, Apgar score of two, from a prolapsed umbilical cord. The physician explained that Jared did not breathe at birth, was resuscitated and lost oxygen to the brain. One day after birth, Jared was diagnosed with an AV canal heart defect and Hirschsprung’s Disease. He needed a colostomy to survive. He was immediately transported for surgery. Hirschsprung’s is a disease where one has incomplete nerve cells in the wall of the colon or rectum. Keep in mind, we were not able to hold or comfort our baby. We were only able to look at him through an incubator and imagine his fear. 

The surgery was successful; however, with under developed lungs and an AV canal heart defect, Jared clung to life. Things were moving so fast. Nearly every report we received was negative. Sometime the same week, we were given a diagnosis of the chromosomal defect, trisomy 21. My first mental thought and visualization of Down syndrome was that he would walk, talk, and learn; however he would be slow. He would need help. Our focus then turned to his severe medical needs. We would concentrate on Down syndrome later. Medically, several physicians follow Jared. Low muscle tone, the lack of motor skills, and poor vision challenge us daily. Jared receives speech, as a related service, at his school. Verbally others may not easily understand him, but if in his company for any length of time, you will begin to decipher and communicate with him. Jared is persistent and likes to make his point.

On December 25, 1991 we held Jared, the first time, for about five minutes. Jared remained in ICU on a ventilator for two months before we were able to think about bringing him home. Finally, Jared was home. Taking care of a sick baby meant 24 hour care. We learned to tube feed and take care of his colostomy. Due to his heart defect and low muscle tone, he could not suck a bottle. 

At approximately eight months Jared gained the necessary eleven pounds and had successful surgery to repair his heart. Upon recovery and release from his cardiologist, our focus was to learn more about Down syndrome, interact with parents of children with Down syndrome, and put forth the effort to have a positive and successful life with Down syndrome. When we think about the future, we visualize Jared working and being a productive member of society. 

The Early Intervention Program (EIP) support is appreciated to this day. After his recovery from surgery, we increased our therapy: physical, occupational and speech, as well as our early intervention journey. The therapy, support and information provided by the EIP staff helped Jared develop and thrive. The EIP support also helped us learn to work with him as parents. Our active participation with early intervention, educational stimulation and therapy brought about positive results. With our participation in early intervention, we were able to expect positive outcomes. 

Jared was taught sign language, which was replaced as he learned one word utterances around the age of two. Also, around the age of two Jared underwent another surgery to repair his colostomy. And finally, at age 2-1/2, he walked independently. We rejoiced when he learned to walk! 

At four years old, we transitioned from EIP to our local school district. We graduated into the real world of subjectivity, Individualized Education Plans (IEP’s), and appropriate educational benefits. You may wonder how we feel about raising and educating Jared. We have felt and still feel all emotions: positive, negative, good, bad, happy, and sad, but we know those emotions are normal when raising children, even a special child. If I could change the health problems and the trisomy 21 diagnosis, I would. However, I never asked, “Why me?’’ My thoughts were, “Why not me?” In my heart I accepted that we were selected by God to help bring awareness to God’s plan for our lives, the uniqueness of Down syndrome, and to provide strength to families, who live with Down syndrome, and others who search for answers. 

Each waking day, our strength is renewed when Jared says, “Love you Daddy, love you Momma,” and seals it with a kiss. We tell him we love him and think of how much progress we’ve made. We know we are loved and protected by God. 

Deborah and Robert Giles 
Phone: (601) 373-5011