THE BLOG

My Kid Is Too Special for Special Olympics

04/15/2015 11:16 am ET | Updated Jun 15, 2015
lofilolo

Yes, you read that right. Caleb is too special for Special Olympics.

In addition to 22Q Deletion Syndrome, autism, immune issues, heart and mental defects, my sweet boy will die if he gets too hot or too cold. He can't regulate his body temperature at all. When he was a baby (before I knew about this condition) his fevers would always shoot right to 105, and then he would have a febrile seizure, which was his body's effort to return his temperature back to normal.

I had Caleb tested when he was 4, when I realized that he never seemed to sweat. The doctor put a combination of iodine and corn starch on all the places one would normally sweat, and then she set him under two heat lamps, with two wool blankets for 20 minutes. The iodine mixture turns black when wet. After 20 minutes, there was not one drop of sweat. Caleb's case goes further than simple anhydrosis (the inability to sweat) because he can sweat a little on his feet, and sometimes a little on his forehead, but it's not enough to cool him, the way sweat usually works. I was offered the option to have surgeons cut into his sweat glands and see why they don't function properly, but since there is no cure, there is no reason to put Caleb through yet another surgery.

A few years later, I was told by his neurologist that if Caleb were to completely overheat, he would literally cook his organs from the inside. At 18, his fevers still routinely go to 103 and require alternating doses of ibuprofen and acetaminophen around the clock (one dose of each medicine every two hours, because neither works on its own). It takes Caleb several days to get back to his normal 97.5 degrees if he overheats, so I spend the majority of my time monitoring him for any change in temperature. If caught in the early stages, Caleb is quick to resolve. I don't ever let it get past that point, but I do keep an ice vest in the freezer at all times, ready to go if, say, the electricity went out (we are on a priority list with our electrical provider).

Caleb's IEP is full of references to the warning signs of overheating -- the first is redness in his hands, arms or legs. This requires immediate attention. Caleb can only communicate if he feels cold, not hot, so those who care for him need to be extremely vigilant. His current classroom has one portable air conditioning unit in front of his desk, and a backup right next to it. There is no reason for his entire class to be kept as cool as he needs it and it might even be dangerous for some of the students, so this system works perfectly. He can't attend PE classes with his classmates because the gym is too hot. His teacher (I love this woman) keeps her car parked outside the classroom in case there is a fire drill--she sits in the car with him with the air on full blast while the paraprofessionals stay with the rest of the class. I am always on call to come and get him if he overheats. Our home is always an ice box and it is always a safe place for him to retreat and recuperate.

Two schools ago we were not blessed with such a dedicated teacher. A nurse sent home a two-week temperature log for his classroom, with recorded temperatures 10 or more degrees over what is safe for Caleb. I immediately withdrew him from that school, wrote letters all the way up the chain of the school board and had Caleb assigned a homebound teacher so he could go to high school that fall. He was blessed with a wonderful teacher at that high school too.

A few years ago, at a special needs day camp that Caleb regularly attended, they were having a barbecue party. Extra volunteers were on hand and somehow Caleb got one who didn't understand his condition. She felt sorry for him because he was inside while the other kids were outside waiting for their hot dogs, so she took him to be with them. In all the chaos, no one noticed Caleb progressing past the redness. When they did, they tried to get him to drink water, which he promptly threw up. By the time the nurse was able to call me, seconds later, she told me it looked like he had a seizure. I rushed him to the doctor, but by then he was completely resolved. Caleb is also too special for some special needs camps.

We deal with the heat as best we can. We've lived in several states and it's safe to say summer is hot just about everywhere, so we just deal with it. Where we live now, there is the highest degree of window tinting on every window, so the sun's heat is reflected back out. In Caleb's room, the blinds are always down, and backed up by blackout curtains. I purposely bought a home where most rooms face north or south so we don't get direct heat on most windows anyway. Ceiling fans run all the time, year-round. I have a white car, rather than a darker one that would absorb too much heat, and the windows are tinted on that too. Caleb only dresses in light-colored shirts. There are modifications to every aspect of our lives, but that's just how it is.

So how does this make him too special for Special Olympics? The event takes place tomorrow at a local college. While today is 72 and cloudy, tomorrow is supposed to be 85 and partly sunny, with humidity hovering around 60 percent. Eighty degrees is the cutoff for Caleb. His IEP clearly states that at that temperature or higher, he can only be outside for 10 minutes and even then he needs to be monitored. I'm thinking as I write this that Caleb may have crossed the line from having special needs to being medically fragile.

The only bus available tomorrow for transportation to Special Olympics is not air conditioned, so his teacher asked if I would take him, which of course I would. But since the events don't start until after 12:20, there is very little chance that Caleb can stay that long, even with me following him with the ice vest (which, like any other 18-year-old guy, he hates). His teacher and I decided it best not to take any risk with him tomorrow, so he will be staying home with me. Fortunately, Caleb took the news well and is looking forward to lunch with his awesome sister and her amazing boyfriend. I am thanking God for those two as I write this.

We send our thanks to everyone who works so hard to make the Special Olympics the success that it is, and we send our warmest encouragement to every athlete who will be able to compete. We won't be with you, but we will be cheering you on from afar.