People hear me talk about my Baby Bear and one of the first questions they ask is, How old is Baby Bear? I say with a smile, he’s 24. He’s my youngest, and he just reminds me of a cuddly bear most of the time. He can also have the strength of a grizzly at times. Thankfully those times are rare.
Right now my young man is resting on my bed. He was just in the kitchen when a seizure hit. Those are happening two or three times a month these days, even with the medication he’s on. He sees his neurologist next month and we will go through the twice yearly routine.
I’ve been watching my young man for a little while now, especially after he made it quite clear he didn’t like the loud box fan in one of the rooms. We have room unit air conditioners in a few rooms, but one is in need of a little work. Baby Bear had the habit of turning down the fan, and then finally kept turning it off completely. When he was finally left alone for five minutes he ripped the cord out of the box and threw the whole contraption outside. For a nonverbal adult with autism, he got his point across clearly. So now we get the AC in that part of the house fixed and/or find a quieter fan that he can deal with.
It took me a few weeks of mulling that over (I’m a little slow to catch on sometimes) but I finally realized WHY he was so adamantly against that box fan. It’s the same reason he (barely) tolerates trips to Walmart or other busy stores. It’s too noisy! Although I can’t really prove it, he has a hypersensitivity to sound. He can hear the hum of fluorescent lighting, and the buzz of other people shopping. It bothers him! For some, there are headphones that block out a lot of the noise but that won’t work with him. He won’t tolerate anything on his ears.
Most any time at home he can be found in his room or on the couch, depending on his need for interaction. The last few days though, he’s chosen to stay very close to his Dad and me. He wants that physical connection of his head leaning against one of us. He’s quieter than usual. It makes me wonder what is coming up next.
As for his doctors, I’ve come up with a new plan of attack. I’m setting up a calendar right along with the writing down of behaviors and seizures. On the calendar i will place a sticker each time he seizes. The calendar will be the first thing I show his doctors. When it is right in front of them, perhaps then someone will pay attention. I know that neurologists really don’t know a lot about seizures or why he keeps having them. The medicine is pretty much a guessing game. Hopefully it will work, but maybe it won’t. I will keep searching for answers.
On a typical day, he knows his usual routine. He knows when the bus comes and he’s ready to head out the door to be with his friends. That can be explained. Other than different outings, his days are pretty much the same five days a week, much like the rest of us. But mention that something is going to happen at a specific time, and he takes notice. For example, years ago when he was 9 he was in the hospital taking treatment for lead poisoning. That very first day of it the doctor said that it would stop at 4 o’clock and he could go back to his room and eat and rest. Right on the dot of four my son was taking the tubes out–or at least trying to. No one mentioned the time. He’d never been taught to tell time but he knew.
That’s my boy though. Always full of surprises. I feel so blessed that he is mine. He’s taught me so much in these 24 years, and I am pretty sure he will continue to do so as time goes on. Given half a chance he has much to teach others as well. He’s a happy, healthy young man who happens to have autism and seizures. He has his moments when he is angry or upset and can be hard to manage at times. Sadly, some choose to focus on the “can be” and all but ignore just how quiet and peaceful he actually is. Yes, he may have a seizure. Yes, he may have a melt down. In both cases, unless you can help, stay calm and stay out of the way.
He is not a monster, not an animal locked up in a cage at a zoo. He’s a human being, capable of loving and being loved. He has a harder time maneuvering around this modern world than most. He doesn’t care who the latest celebs are or what the newest techno gadget is on the market, but he will sit and listen to music with you for hours. You name it and he will probably listen to it, although his favorites are Oldies from the 60’s, disco, Michael Jackson, and Latin hip hop. Go figure.
While safety can be an issue with both seizures and meltdowns, I honestly don’t think that those aspects of his life should be the only things seen and known about him. I don’t care much at all about awareness. I don’t. The focus should be on education and plain and simple compassion. This next statement will be a bit controversial but I’m going to put it out there anyway: Focusing only on the “possible” is just as bad as seeing only the sin in someone’s life, and not the person. He is my son; he is a human being; he is a child of God. He is NOT Autism and he is NOT Seizure disorder. Those do not describe him, they only name his diagnoses. How sad this world is when people are seen only by labels instead of the whole person they really are. Autistic. Disabled. Conceited. Prideful. Education is the key. Ask questions. Read up on what you don’t know. Take a class. Speak to him. Show him that you truly care.
And that’s how you care for a Baby Bear named Jesse.