As I sit here in a food coma from the earlier Thanksgiving feast, something comes to mind that has been bothering me for awhile. The issue is regarding people’s attitudes towards their siblings.
An old friend of mine used to tell me her qualms about her twin sister: her attitude, how her sister is a slob, selfish, etc. The typical issues. Some of my friend’s problems with her twin could be placed at fault of her sister, other parts of it came from my friend’s own attitude.
After hearing about this, along with several other qualms, there is a reason I broke off the friendship. The way she would complain about these issues would frustrate me.
She really had no idea how fortunate she was to have a sister. And a twin at that!
For myself, I don’t have a ‘normal’ sister.
My sister is severely autistic. She has never said more than a few words outside of the hours of repetitive babbling. And I do mean HOURS. There have been occasions as a child that I would scream at her to shut up, even to the point of hitting her. This would be counter-productive, since she would start crying, my parents would come in and I would get punished.
Going from that point, I was extremely confused and frustrated at my sister when I was a child. Everything, EVERYTHING we did or planned revolved around my sister, her needs, her hates, her wants, etc. There were some events or things I wanted to go to, but could not because of her needs. We never could have a normal vacation. (One time we had to leave an amusement park because my sister planted herself on a bench and refused to go any farther because she was scared of all the roller coasters. Thankfully she was nice enough to do this BEFORE we bought our tickets.) We can never have a normal meal. (The speed she eats would make a hot dog competitor cry. Of course after she eats, my mother has to get up from the table to get her settled in her room. This makes having a complete family meal impossible.)
This made me angry at her, faulting her as the reason we could never be a normal family. I was angered that I had to play the older sister role. I was angry that I didn’t have an older sister to look up to, that I could go to and talk about growing up, boys, makeup, clothes, the future as a woman. I would scream at her and hit her out of frustration. I would lay in bed at night just wishing that maybe, just maybe one day she will wake up and be a normal cognitive being. That this was all just some nightmare.
But it never happened. She was born in ’89, a time when autism was unknown and scarcely talked about. Early detection and quality autism therapy did not exist back then. If I had a nickel for every time I had to explain my sister’s condition to the ignorant kids of the 90’s during my childhood, I would not be in community college. That level of ignorance is the exact opposite of today, with the advent of early detection, high awareness and arguably over-diagnosis.
As the years past, I matured, I no longer hit her, but I still yelled at her from time to time when her babbling would get on my nerves. Around this time she developed seizures, which occur in about one-quarter of those who have autism, usually developing in their adolescence. She had two in 2007, which I managed not to witness. She went on medication, and all seemed well. Then in the summer of 2009, I was was alone watching her while my parents went out to eat. What I saw that day I will never forget. My sister, on her bed, blue in the face, eyes rolled back, foaming at the mouth, seizing. There was nothing I could do as I sat there hyperventilating. All I could do was watch and make sure she did not fall off the bed. Now she gets seizures every few months, which have become more violent as time goes on, even with medication. It’s gotten to the point where we don’t know if the medication is even working, or if it is preventing even more seizures or more violent seizures.
I still get nightmares and trembling fears that I will witness a seizure again, or worse, experience one myself. I have had nightmares of her dying from a seizure, injuries or implications from said seizure. Every time I come down to my parents’ house, I constantly feel anxious, thinking ‘What if she has another seizure while I am here? What if something happens?’
I know many have anxiety about seeing their parents for the holidays, but I doubt many feel the kind of anxiety I feel when I am here. Most worry about their parents lecturing them about getting a job, their relationships, or asking awkward questions. Honestly, I would take that in a heartbeat over the kind of anxiety I experience here.
The other issue that has developed the past year is her obsessive ‘purging’ behavior. She will tear up papers, mail, her own clothes, DVDs, puzzles, food, and anything else that is ‘old’ to her. She has gotten to the point of breaking plates and mugs, so now all the crockery in the house is plastic, and any breakable dinnerware is locked away or at the old house with us. This was the first year we did not use my late grandmother’s dinnerware for Thanksgiving, which was a family tradition. This year, we used plastic plates and cups. As a visual person, these tacky red plates sucked the nostalgia right out of the room for me.
Now when I come down to visit my family, I have to watch her to make sure she does not go into my room and protect my room like Fort Knox. I have to be careful not to bring anything important: papers, fragile items, etc., in fear that she may destroy them. As time has progressed, she has become more frustrated and violent with breaking things, even desperately trying to break the plastic plates. I am fearful of the day she becomes violent with us, which I have heard is what many others with her condition have gotten to, leading them to live in a group home.
As horrible as this may sound, and I understand if you are angered, but I don’t know how I would feel if-god forbid-she passed. In some ways, I would feel relieved. I feel in many ways it would help us. The house wouldn’t needed to be locked up like a safe. My mother could finally breathe, travel and actually live a life outside her home and church. My father could be less stressed and would be able to bring his wife in his travels. I don’t even know if I would even grieve for my sister. After all the years of anger, frustration, and apathy towards her, I don’t know if I would even feel anything.
God forbid, but if it happened, maybe, just maybe, we could actually be a ‘normal’ family, a wish I have had since childhood.
My whole point of this, is be grateful. Be thankful for your family. Love your sister, your brother.
Let me just put it in this one perspective: What would you do if you woke up tomorrow and your sibling(s) because highly autistic, could no longer communicate with you, and suffer with seizure and violent behavior?
Be grateful you have a ‘normal’ sibling. Life can easily take that away from you. Talk to them, give them an extra hug tonight. As you sit in your food comas on the couch watching that last football game of the night, or washing those last dishes, tell your family you love them. If they say ‘I love you’ back, treasure it.
I will never hear those words from my sister.