Special Kids with Special Needs

This month, I want to call attention to a group of kids and families whose lives might be a little different than yours and mine. I am referring to kids with “special needs” and the families who sacrifice so much to take care of them. When I say “special needs”, I am referring to kids who have chronic health problems that can range from a preemie baby with complications, cerebral palsy, Down syndrome, congenital heart and lung disease, autism, cystic fibrosis, diabetes, and any other lifelong illness. The families that take care of these children are special in and of themselves. Their devotion to these kids is an amazing story, and today we will meet some of them.

When I first met Kevin, I was in the ER at The Children‘s Hospital of Alabama in Birmingham, and I wasn‘t sure what to expect. This was a 26 year old man with a lifelong pediatric illness called Duchenne‘s Muscular Dystrophy, an inherited disorder that affects the muscles and lungs and leads to a severely shortened lifespan. I expected a sad person with a downtrodden family who had dealt with a lifetime of hospitalizations, medicines, and surgeries. I walked into the room to see a smiling, polite young man who was in the middle of telling a story about how he had tricked his little brother into putting a salt-covered lemon in his mouth for 30 seconds, and the parents were cracking up! I thought to myself, how can such a devastating situation lead to this wonderful family laughing about a prank? How would I feel if that were me or my child?

Cody was a young child of 9 years who I met in Birmingham as well, who was basically a permanent resident of the pulmonary ward. Cody had a severe form of Cystic Fibrosis, a devastating disease that affects not only the lungs, but pancreas, liver, and gut. When I walked into his room, he was on the phone with the local sports talk radio station that broadcasted all over the city and he was talking up NASCAR and Auburn football! He was such an avid fan, that they expected him to call in every afternoon to talk sports! At this point, Cody had been admitted to the hospital for over 6 weeks receiving IV antibiotics and other therapies that he could not do at home. Later that night, I saw him and two other kids with CF wandering the halls and joking around. As we were talking, the other kids drifted off, and we started talking about his family. He was one of 5 kids, and the only one with CF. He hadn’t seen his parents in 5 weeks, mainly because they lived two hours away and had to work two jobs to help take care for not only the other the kids, but to help pay for all of his care at home and in the hospital. I expected him to be sad about his family situation, but in fact, he was so amazed and thankful that his parents worked that hard to support his family. How would I respond? How could I help?

I have seen numerous kids and families like Kevin and Cody throughout my career and am constantly amazed at their stories. I know families who sacrifice their entire lives to take care of these kids, including numerous doctor and hospital visits. I have seen families torn apart by the stress that goes along with the sacrifices they make and I have seen families strengthened by them. So my word of advice to you is to pray for strength for these families and help them any way you can. Help can come in lots of ways— not only a donation to a cause! Sometimes, just a simple smile and hello and acceptance can make a world of difference. One of the most important things a child with special needs can do is be incorporated into mainstream activities. School, sports, and extra-curricular activities are important aspects of a normal childhood and are important to these kids and families, so welcome them with open arms and help if you can. A simple hug or pat on the back can go a long way. Finally, teach your kids to do the same. Teach them to be open and accepting to all human beings, especially those with special needs.

Robert L. Rux, M.D.

Robert L. Rux, M.D. is a Board Certified Pediatrician at Magnolia Springs Pediatrics. Originally from Mobile, he attended medical school at The University of Alabama School of Medicine (UAB) and completed residency at The Children’s Hospital of Alabama (UAB). He is married to Jaime and has three children, Adler, Walker and Mary McAtee.

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