Every parent dreams of having a healthy baby. Many premature births result in birth defects and later special needs in education.
According to a recent US Census, about 4 million American children have a disability. That is 11% of the population aged 6 to 14.
For the Love of Rachel [David Lowenstein, Enalan Communications, 2007] is the story of one family whose child falls into this category. Rachel Lowenstein was born at 23 weeks gestation.
At 157 pages this book is an ‘easy read’ although the subject is far from light. Written by Rachel’s psychologist father, this book looks openly into the hearts of a family that knows first hand the harsh reality of many premature births.
Lowenstein describes times of Rachel’s early life as an emotional roller coaster as the family celebrated Rachel’s survival and successes. Equally often, however, they were challenged with difficult decisions and offered meager hope. Rachel Andrea spent the first nine months of her life in the hospital. She had several brushes with death before coming home with many disabilities that would affect her entire life: cerebral palsy, hearing loss, short gut syndrome, and retinopathy.
Lowenstein writes of the obsession our culture has with perceived beauty and perfection. This is often a concept that makes acceptance more difficult for child with a physical, behavioral, or cognitive disability. Perhaps overcoming this perception should start with children of a very young age (such as the case in Rachel’s kindergarten class); perhaps the education should begin in homes with “typically” developing children. In For the Love of Rachel, David Lowenstein writes:
Understanding the issues of a special needs child is not only important to families affected by prematurity, genetic abnormalities or developmental disability. The need to see each child as a unique individual is equally important for parents with developmentally normal children.
Years of tough work, therapy schedules, enormous love and encouragement have paid off for the Lowenstein family. Working hand in hand with the local school district, the Lowensteins have been able to work toward the development and support of an educational program designed to meet Rachel’s individualized needs. At the time the book was written, Rachel was progressing in the regular sixth grade curriculum at her school with the help of an aide. (Read more about the law and practice of inclusion of special needs students in the “regular education” classroom.) In fact, the family has grown to include another child. . . this time an adopted daughter from China.
For more information on birth defects visit the March of Dimes website.
