I am a younger sibling, and spent my first years of my childhood watching at first my parents, and then my siblings taking care of his needs. I didn't realize this until one of my siblings mentioned it, but apparently my parents thought that they could assume responsibility of his care when they became twelve years old. I didn't know that, because I was much younger when I started to take care of them. I believe I was around seven years old. That was because of something I did when I was six and told my mom about it, and she believed it to be a sign that I was ready to help.
It was during the day, and I found myself alone with my brother for a few minutes. He was happily playing around on the floor, but I was getting a little freaked out by the creaking of the stairs. I had quite a vivid imagination and got scared of what kind of things might be causing the creaking sound. I closed the door so that the two of us were "safe" together in the room. After a while, He began sucking his tongue (similar to clicking your tongue, only it is in the back of the mouth instead of the front), which even by that age I knew meant he was either hungry or thirsty. He was doing it a lot, and I thought he would like something, but was too scared to leave the room. It went on for a few minutes, so finally I got up the courage to run out of the room, grabbed something with water (I was too scared to look for the cups, so it ended up being an odd little metallic bowl), and run back in, making sure the door was shut quickly. Perhaps it was a bit awkward since I hadn't done it before, but I remember that he took that drink, little as it was, with little resistance, and so from then until now I've been filling him with food and water.
Some people might think that he's got it made: He doesn't have to deal with the worries of life like the rest of us do. I beg to differ. Growing up with him, I've seen the struggles he's had to deal with. He can't communicate a lot. He knows how to make noise, but doesn't vocalize a lot. His speech is limited to the vocalizing and humming you might get from a baby. The only way we can determine his needs and wants is his response to things, which normally shows in the amount of cooperation he gives us. If he doesn't want that food, he'll clam up his mouth. If he's tired of sitting, he'll try to slide out of his chair.
His seizures aren't a picnic either. On our side, we've seen all kinds of seizure from him going from grand mal to screaming to subtle ones that make the eyes roll into a distant look. I was pinned to a chest of drawers once for a couple of minutes when he went into a seizure while changing him. He stretched out his leg. His foot went right into my stomach area, and I was thrust against the furniture. Anyone who has dealt with seizures knows how stiff and tense those muscles get during a seizure, and there's no way of fighting it, so I had to sit there, pinned, and wait until his muscles loosened up enough to slip out. That's more of the not so easy thing on my part, but I know it's not easy for him, either. I've watched him when he has continuous seizure activity for literally hours, and how exhausted that makes him. He sometimes gets minor injuries from it, and once knocked out his two front teeth when someone was neglecting to watch him. Not fun at all.
Dealing with him when he gets sick is also a mutual non-enjoyment. He doesn't get colds as much as he used to, but it was always inevitable that I would get sick if he did. He has no control, so when he sneezes, he sneezes sudden and hard, and sprays everywhere. He can't wipe his nose either. Dealing with vomit is not a fun experience either. He can't always roll over on his own, especially when he is sick, so I have spent many hours sitting next to him so that I can roll him over when he gags. The many washes of clothes, bed sheets, towels, and anything else in the way are innumerable. It's just as disgusting when the other end has problems. Needless to say, we don't like him getting sick.
His mobility is limited. He can walk with assistance, but not alone. We had to feed him. He isn't able to use his hands for most things, though he does like to feel things. Once in a while, I'll put his hand on something and he'll rub it for a few minutes. Basically, his mobility function is within the range of between a 6 month old and a 18 month old.
I've discussed the not so fun things. I want to talk about some good things about taking care of my brother. He is quite good natured. I'm acquainted with the disabled and know how excited and temperamental they can get. He doesn't get that way. He's quite serene. He can get stubborn, but never makes a fuss. He's patient, and has endured a lot of difficulties without one sense of getting upset. This little guy's my hero.
He loves music. A lot of times he'll appear unresponsive, especially when he's tired, but turn on some music, and he perks up. We might even get a laugh out of him also--one of his ways of expressing himself when he's happy. I don't think he has a particular preference to music, but the other day, I was playing a recording of me singing, "Part of That World" from The Little Mermaid, and he laughed, and he's reacted to other Disney songs before. He basically listens to whatever we play.
He can't communicate a lot, but he's an affectionate little guy. He loves touch. He likes to rub his nose into my shoulder when I give him a hug, which may seem disgusting to other people, but it seems to be his version of nuzzling. When I lean my head against his during a side hug (normally when he's in a chair), he'll turn his head against mine. If I sit next to him on a couch or a double seat, he'll lean on me, possibly collapse on me after a while. He loves head rubs, and has recently figured out how to give himself one if we don't do it for him. Silly.
I didn't have much of a life as other people interpret that meaning. I wasn't a recluse, but the majority of my growing up years were spent making sure he gets home and staying at home with him. He probably knows more secrets about me than anyone else in the family. Those were the years that I could have been more socially involved, but instead I stayed home. Are there things I missed out on? Yes. Do I regret missing out on those things? No. I liked being at home. I liked being with him, and I loved the quiet time. The two of us, we've done a lot together, so we might as well be considered BFFs.
