Three Tips to Deal with a Special Needs Diagnosis
By: Michelle Gilliam
As a public relations professional, I am often tasked with producing special events. At approximately 28 weeks pregnant, I was preparing to introduce the new executive director of a local nonprofit when my cell phone rang. My OB was finally calling with the results of my amniocentesis that I had been awaiting for ten days, but I was ready. I knew the beautiful baby growing inside me had Down Syndrome, and I was prepared to love him with all of my heart.
At our 12-week ultrasound, the obstetrician saw an enlarged neck on the tiny fetus I already loved so much. She measured the nuchal fold and brought in a nurse who specialized in genetics to discuss the little baby’s chances of survival. Just five months earlier, I had suffered a devastating miscarriage, and I wasn’t sure I could lose another little one. The nurse explained we had a 33 percent chance the baby had Down Syndrome, a 33 percent chance of a fatal chromosomal abnormality and a 33 percent chance that my child had no special needs at all. My husband weighed the numbers while I cried. It was all too much to handle, but down deep inside, I knew everything was going to be just fine.
My son is now 16 months old and is the light of my life. He is outgoing, loves to smile and laugh and is one of most popular children in his daycare class. When I post photos of him on Facebook , he gets hundreds of likes and tons of comments in minutes. I only wish I had known how much joy he would bring when I first found out he might have special needs. For anyone facing a special needs diagnosis, I have some advice:
1. Do your research: While all of the information about various chromosomal abnormalities is overwhelming, research on various special needs can help when faced with a diagnosis. Within weeks of finding out my son had an extra 21st chromosome , we were already connected with the Down Syndrome Association of Jacksonville and Hope Haven Children’s Clinic and Family Center . Knowing what to expect made coping with a special needs diagnosis much easier.
2. Don’t get discouraged: When a local daycare center wouldn’t accept my baby because of his extra chromosome, I was devastated. I thought I might have to quit working to raise my son. I was very wrong. Most daycare centers were delighted to care for my son, and we enrolled him in one that encourages and guides him.
3. Stay positive: A positive attitude is vital to dealing with the challenges facing a parent with a special needs diagnosis. Before you have had the opportunity to meet your lovely child, it is difficult to wonder what the future might hold yet it is easy to bury yourself in self-doubt and disappointment. When feeling down, remember that your child is unique and wonderful in his or her own way and keep looking towards a bright future. A positive attitude makes every challenge easier.
When I found out my son had a special needs diagnosis, I thought of all of the things he wouldn’t be able to do. Then, I started to meet people with Down Syndrome, and I discovered he would be able to play sports, go to college and get married. I quickly realized that Down Syndrome isn’t a disability at all. It’s just one extra chromosome to love.