Do I have a special needs child? The short answer is: I don’t have a damned clue. I’m not even sure what special needs means anymore. I know that when people ask questions about my child, they want to know exactly what the problem is, and that it’s been solved. I’d love to know that, too.
My son, Joey, is 7 months old. He’s our third child, and since the beginning he’s been an adventure. During his first bath, I watched as he stopped breathing. Doctors, nurses and medics rushed in. Soon after, he was in the neonatal intensive care unit. A few days there, and a few more in the hospital room with us, and we took him home. About a week or so later, he was admitted to the hospital for “failure to thrive.” Simply put, he was losing weight. He had low muscle tone. Tests, tests and more tests. The first thing they hit us with was that he exhibited symptoms for Prader-Willi Syndrome. Googled that. Panic.
Two long months later, we found out it wasn’t that, after all. Meanwhile, Joey still wasn’t eating or gaining weight. In went the nasogastric tube. The small tube went up his nose, down his throat and into his stomach. We had a pump, syringes, feeding bags. Our house turned into a medical supply store. Oh, and more tests.
Eventually, the nasogastric tube came out, and the gastric tube went in. No more nose and throat nonsense; now the kid has a port right on his abdomen. Plug and play. At the same time they installed that, the surgeons performed a Nissen fundoplication, to fix his reflux issues. Now he can’t throw up. He can’t burp, either. You have to vent his stomach through the feeding tube.
Here we are at month seven. He’s now eating rice cereal and some baby food. He loves vegetables, but turns his nose at fruits (weird kid). Joey gets about 10 percent of his food by mouth, and the rest is pumped in through his feeding tube while he sleeps at night. For months, he wasn’t even on the growth charts, but now he’s sitting strong in the fifth percentile. He’s a little behind on physical milestones, but slightly ahead with cognitive and communication milestones.
Back to the original question: is he a special needs child? It sure doesn’t feel like it. Yes, he has more doctors than I can count, plus physical and occupational therapists (and they are all amazing). We know that, without modern medicine, he would not be alive today. Yes, he has an IV stand next to his bassinet to hold his feeding pump and feeding bag every night. Yes, he’s been to the hospital more than anyone in our family… combined. We don’t know what the problem is, what it’s called, or why he has it. We don’t know the solution. We take it a day at a time and accept it as the new normal. We hope that it’s a rough start, but we really have no idea. What we know is that we love him, and that he’s damned cute.