When people get to know me and learn that I have a disabled brother, they show a keen interest in him. What kind of things can he do? How do we communicate with him? What is wrong with him...exactly? You'd think that I'd get tired of the same old questions being asked over and over again, but I don't mind. He has been a part of nearly my whole life (being only fourteen months older) and I learned at a young age that people would wonder about him.
To be honest, I never thought much about his situation as a young child. He was always normal to me until one day as an older child we took him to watch the Fiesta Days parade...one of the many festivities held in Spanish Fork, Utah for the twenty-fourth of July celebration (Pioneer Day rivals the Fourth of July in Utah). We were just sitting with him when I noticed that all the kids passing us were staring at him. To be honest, it bothered me and I believe I said something to my mom. I don't remember her reply exactly, but I do remember that it was at that moment I realized that many other people didn't know what it was like to have a severely disabled family member. After thinking about it for a while, I realized that there was no reason to be ashamed of it.
Ah, my little brother! To think of what he has to go through in life!
So what can he do/can't he do? To simplify my answer, I'd just explain that he's like a big baby.
- His mentality and motor functions range from six months to 12 months (no more advanced than 18 months).
- He can't talk. He sometimes responds, but not verbally.
- He can't walk by himself...only with assistance.
- There is little or no control with his hands, so he cannot grasp objects well. He has to be fed.
- He has to wear diapers
How do we know what he wants or needs if he doesn't speak?
Spending a whole life with something often gives you plenty of experience to learn how someone in this situation reacts. He's actually a very calm and patient little man. He does not complain very much, but when he does, you know. He'll get stubborn and refuse to cooperate. Sometimes when he doesn't want to eat something, he'll just flip his head away to avoid the spoon.
What is wrong with him...exactly?
He's got multiple disabilities that limit his ability in just about everything one needs to be independent. There are three things he's been diagnosed with. First is Microcephaly. That means his head is misshaped and undersized as well as his brain. Second is Cerebral Palsy. This affects his muscular functions, clearly why he is unable to use his hands well. Third is epilepsy. Perhaps it is a side-effect of the Microcephaly, but from the time he was six months old, we've had to deal with his seizure activity. He has daily seizure activity. Though most of them are just small jerking movements, he has had some not so fun seizures to deal with. It's the worst when he gets into a continuous seizure mode and starts throwing up during every episode. Thank goodness that doesn't happen often!
Everyone seems amazed when they hear about what I deal with day by day, but to me it's just normal. I have a large family who has helped take care of him. In my opinion, he has been the source who has tied our family together. Being closer to his age, I am the one who has worked with him the most. While my older siblings were working, going off to school activities, or socializing with friends, and my parents working full-time, it was I who often stayed home with him, so yes, I missed out on several things, but I don't feel cheated in life. My brother and I...we're best buds!
