Stephanie Bayless on How Her Family Built Its Own Version of 'Normal'
Sometimes you just know, right? When my husband, Tim, and I opened the email with a photograph of a newborn baby attached to multiple tubes and wires, we just knew he was going to be part of our family.
This was decidedly not what we had planned. We had carefully considered all options when starting the adoption process and came to a few conclusions: no babies, no major medical issues, no drug use, and—again—no babies. As usual, life didn’t quite follow our plan.
We had our first child, Olivia, when we were young; I was 19 and he was 20. When we reached our mid-20s and decided to grow the family, adoption just seemed right. I honestly don’t remember a lot of conversation about the decision. One day we mentioned adoption and, from then on, it was what we were going to do.
After pondering the cost of private adoption, we decided to pursue adoption through the foster care system. I’m not going to sugarcoat it; this was a difficult process. Government agencies often get a bad rap for their incessant red tape, but the stereotype is somewhat based in truth. Other families working through the process were a wonderful source of support—we could exchange program information and ask questions of those further along.
The process took two years from start to finish—a bit longer than expected because we moved counties, had to transfer all of our stuff, and weren’t in a rush to get started again while we were settling into our new home. When we did start up again, we were still connected to the previous county—a fact not discovered until 15 minutes before our scheduled home study. That was stressful.
When you get to the point of choosing a child for your family, you get packets full of biographical and medical information. I’ll admit it felt extremely foreign to read about the family and medical issues of children who needed a home, knowing we would pick the “right one” in the end. It almost felt wrong to be making the “choice.”
When we made it through the paperwork, the classes, the selection, and the delays, a beautiful little boy was waiting for us at the other end. He showed up at our house weighing 8 pounds at 5 months old.
Carder’s medical condition was an unknown in the beginning; he had several red flags, but wasn’t yet displaying any definitive symptoms. Even when he started to fall behind and experience some fairly distinct delays, most could be explained by his premature birth. Disability remained the big elephant in the room.
His pediatrician recommended a childcare facility with therapists on staff. At that time, we weren’t even sure he would qualify—and he barely did. Since he was born prematurely, he had to be tested as the age he would have been as a full-term birth. The other mitigating factors making up the bigger picture—little to no prenatal care, drug use—were overshadowed by the “premature” buzzword. Thankfully, he just squeaked by and was able to start therapy.
When Carder was eventually diagnosed, I was surprised by how fast everything changed. Suddenly it was like a switch had been flipped and instead of “waiting to see,” we were waging a full-on war against cerebral palsy. Therapy and equipment and specialists…at one point we added an extra doctor on top of all the others just to help us coordinate.
The number one most important thing when raising a child with special needs? A pediatrician you trust. Someone who will listen to you, explain your options, give her opinion and follow your lead. I’ve spent enough time struggling with unresponsive doctors to learn what a gift a good pediatrician really is.
Number two? A support system. Family, friends, neighbors—you will probably need them all. They will help you in ways you didn’t even know possible. Sometimes you just need them to keep you sane (shout out to the ladies in the Junior League of North Little Rock!).
Carder is 5 years old now. He attends preschool at Ascent Children’s Services in North Little Rock, where he is able to develop mentally, socially and physically. He has teachers and therapists who love him and support us. Sometimes I am amazed by how normal our life is—like when I hear Olivia yell out in her best annoyed voice, “Stop Carder! You are making a mess in my room.” Other times our differences are glaring, but, like all families, we’ve managed to find and flourish in our new normal.
Since Carder joined our family, I’ve searched all over looking for advice and support. I’ve scoured the internet for blogs and message boards populated with parents in similar situations. I’ve learned that you have to make your own way. Find your own happiness. I’ve learned it is important to advocate and work for your children, but never to lose sight of their need to just goof off occasionally. I’ve learned to appreciate my friends and family in a whole new way. I’ve learned that I’m strong, my husband is strong, and my family is strong.
What do I want you to learn about raising a child with special needs?
You will be tired. Who isn’t? But this is a different kind of tired. You will be tired of being an advocate, of juggling medical appointments, of changing diapers way past potty-training age, of doling out medicines, etc. Making time for yourself is a must—you are more than “mom” or “dad.” The same goes for your other children. We take great care to make sure Olivia has her own alone time and her own time with mom and dad.
You will feel alone. Sometimes raising a special needs kid feels like those early months with a new baby, when leaving the house is almost a burden, when it is just so much easier to sit around and cuddle. Fight past that urge. Find a way to get your family out of the house. Yes, you will have to plan and probably bring way too much stuff. Yes, you may need to go at off-hour times when public places aren’t as crowded. But just do it. The longer you wait, the harder it will be.
You will feel strong. There is nothing that makes me feel stronger than taking an active role in Carder’s medical care. Telling the doctors and therapists what I believe is best for him and having them work around my expectations. Getting rid of someone who is not a good fit for our medical team. Confronting your challenges head on—whatever they may be—can make you feel like a superhero.
You will celebrate everything. When Carder pronounces a word particularly well (usually “yeah” or “bye” as those are his two best) the house erupts in celebration. It is just exciting. When he pretended to be a ninja with the other boys in his class—his first time to play like that—I dedicated an entire blog post to his new skill. The little things mean everything when you are dealing with development delays.
Never miss an opportunity to celebrate.
Stephanie Bayless is an archivist, historian, and life-long Arkansan. She lives in Sherwood with her husband, Tim, 11-year-old daughter, Olivia, 5-year-old son, Carder, and two very noisy dogs. Stephanie is active in the Junior League of North Little Rock and several other professional and charitable organizations. She published her first book, “Obliged to Help: Adolphine Fletcher Terry and the Progressive South,” in 2011. Read more of her work at PlayfullyTacky.com.