Children with disabilities still need lovePublished 4:31pm Saturday, March 29, 2014
QUESTION: How do parents cope when their child is first diagnosed with a disability?
RESPONSE: Normally they first experience the grief process that comes with the loss of the expected “normal.” They feel shock, then anxiety or fear and sadness; then there are the thoughts of “what if” and “if only.” Practical responses include getting accurate information and finding emotional support. Sometimes the “worst” never materializes and sometimes the challenges are more complex than ever expected.
Perhaps the most important truth to believe is that any child, no matter the challenges, who grows up in the center of love, attention and devotion in a warm and loving family will thrive. March 21 was World Down Syndrome Day, which caused me to reflect on two families I love who have raised children with Down Syndrome into adulthood and have done it with great love, grace and humor.
Andrea Dawn was the first child born to my friends when we were in our late 20s. Her father was a physician and was in the delivery room; the birth seemed to go well and all was “normal.” It was later in the day that it was determined that the baby was diagnosed with Down Syndrome. The next morning I walked into the hospital room, sat down next to the bed and asked the new mom, “How are you doing?” She looked at me and said, “Yesterday, I had a Down Syndrome child. Today I have Andrea Dawn.”
Just a few years ago, I was in a restaurant with a good friend who grew up with her younger brother who had Down Syndrome. He had lived to be the beloved uncle of her own two children. As we ate our meal together, my friend saw a family at a nearby table that included a sister and her younger Down Syndrome brother. As we left the restaurant, my friend walked by that table, leaned down to the young girl and said, “No one will ever love you more in life than your younger brother.”
In these families, and in many others, commitment has overcome frustrations, laughter has trumped tears and enjoyment of the child, adolescent and adult has triumphed over the challenges of the disabilities.
To talk with a parenting specialist about the challenges in child-raising, or to ask about experienced Parent2Parent mentors who are raising children with disabilities, call the toll-free Parent WarmLine at 1-888-584-2204/Línea de Apoyo at 1-877-434-9528. For free emergency child care call Crisis Nursery at 1-877-434-9599. Check out www.familiesandcommunities.org and resources on all types of childhood disabilities at the PRC Specialty Library (105 First Street S.E., Austin).