My job is definitely interesting, and it is very nice to kind of be able to choose my hours. I was working with my highest need client *Julie who is 15 and is quadriplegic, severely mentally retarded, has small seizures almost daily, cerebral palsy and a g-tube (or feeding tube). She has to be lifted out of her chair to the floor to change her briefs every 2-3 hours, but she is only 87 pounds, so that isn't too difficult. Also, she had spinal surgery and has rods in her back that prevent her from bending above the waist. That is pretty helpful because holding her back is more like holding a board that way and she won't fold and slip through your arms. Her mom is SOOO organized. The house is spotless and there are calendars everywhere. I saw typed copies of Julie's feeding/meds schedule in three different places in the kitchen. When Julie's mom asked me that Wednesday to come and work for them Sunday at 2:30, she asked me if she should call and remind me on Sunday. I told her, no, that I would remember and seeing the bit of worry on her face I programmed the date and time into my phone as she watched. She recently asked me to do respite for her July 6th and I agreed, then she asked if she should call me to remind me. I assured her that I already had the date and time down. It didn't bother me that she was concerned. Honestly I think it is totally appropriate for her to follow up with people because when you have certain things that MUST be done at certain times, as most of us do, reliability on others can be scary. If I did not show up at her house on time... or even not at all... the schedule would be completely screwed up.
I have told others that when I was about 13 or 14 I was honestly shocked to see how irresponsible most people are and how unreliable the grown up world can be. Until then, I guess I had always thought that people- business people and teachers especially were responsible. They follow through without having to be asked. I honestly had no idea that anyone would just not show up for work one day. It was beyond my imagination. I know it seems stupid, especially when I didn't even have a reliable ride home from school, but at least I always knew that I could get a ride eventually.
Julie's mom let me know to change Julie's position every 20-40 minutes, even if it was just the tilt on the wheelchair. She showed me all of the toys I could help her play with, showed me how to put her on my lap and rock her in the rocking chair, and how to stretch her limbs while she is on the floor before or after a brief change. Julie doesn't speak. She doesn't do sign language. She doesn't laugh. You are unable to see much emotion in her eyes. She is legally blind, but is able to see a little bit. When playing with her toys, I am supposed to put it on her lap or close to her face, put my hand on top of hers, and press the buttons or whatever is necessary for the toy. Her mom says her favorite toys are the ones with different lights or sounds. I wonder how she can tell. Julie sometimes smiles, but it seems to be random. Sometimes she makes groaning noises, but her mom tells me that this doesn't indicate discomfort, it is "just something she does when she's hanging out." For the feeding, you pretty much just have to hook a tube up to the tube in her stomach, lock it, and pour measured formula through a funnel, then flush it with water. It is not difficult, I wonder why some people will not work with clients with g-tubes. Of course, it may just be due to the rest of the problems that led to the g-tube, because if they are unable to eat on their own they are probably unable to walk on their own, talk on their own, use the bathroom on their own, etc.
When I arrived at Julie's on Sunday afternoon, 15 minutes early, as I figured that would make her mom feel better, her dad greeted me outside. He informed me that Julie was taking a nap, but would probably be waking up pretty soon. He slowly woke Julie up and cuddled her and changed her as I watched. I don't know if I have ever seen such a caring father. Honestly what I expected was to deal with the mom pretty much exclusively and maybe see the dad in passing, but never actually holding and hugging Julie. I know, how sexist of me, but it was a nice surprise to see their interaction. Having a child with a disability can be extremely difficult and stressful. Another girl I work with has Downs syndrome and is the sweetest, funniest little girl, but her mom is a single mom. Her father left when she was just a toddler and her mom tells me that a lot of the reason was that he was just heartbroken to find out she had a disability. He wasn't able to handle it, so he left. It was such a nice contrast to see a father not only interacting with his child, but enjoying it. This didn't look like something he did because he had to, it is something he did because he loves her.
After the family left, the house was very quiet. I just kept talking and talking to Julie, and though I didn't get any feedback from her, she didn't fall asleep so maybe she enjoyed it. We went for a walk, had a nice formula dinner, hung out on the floor and did some stretches. As she was on the floor I lay down beside her and read her four children's stories. I read them all very loudly and emphatically, and just for kicks I did a different accent for each one. I changed her, I put her in my lap and rocked in the rocking chair with the tv on, commenting about the subject matter throughout. I don't know if she understood me, or even if she heard me, but fortunately I have a lot of practice talking to myself and my pets, even an appliance here and there so I didn't feel at all uncomfortable. Toward the end of the evening, as Julie and I sat in the chair I got to thinking about all the other people who watch Julie. I would hope that everyone would take excellent care of her, but many people just do what they have to because they have to and don't care otherwise. For example, when I was doing my clinical hours at the ER for my EMT-B, a nursing home dropped off an old man at the door from their van. They didn't send anyone in with him, he was obviously senile, he was covered in his own feces and his catheter bag was so full that it was bursting at the seams. It makes me sick to think that a family would entrust their loved one to a facility that would let this happen. From the horror stories I hear, I'm sure this is not the worst of it, either. So anyway, I was thinking, maybe Julie's family has one of those nanny-cams. A hidden camera to make sure that Julie is getting proper treatment at home. Of course I immediately reviewed my time there in my head. I was sure that although they would probably think I was very strange, reading to her in all accents and talking about weird random stuff, they would love the attention I gave her. Fortunately, I probably wouldn't have changed much about my behavior if I had thought I had a camera on me, though I might have tried to be less of a weirdo, which might not have been as fun for Julie. Even with all of her special needs, working with Julie was a cake walk compared to working with my little Devil Incarnate, Aiden :).

Land of the Rising Sun
I left early Thursday morning with my mom and sister Natalie to go to Japan to visit my younger sister
Cassie and her boyfriend Colin who have been living there for the past year and
a half teaching English. When we got on
the big plane, the one that took us from Detroit to Osaka, I
noticed that there were a lot of babies. They were all Japanese and Chinese, so they were of course adorable, but
I couldn’t figure out for the life of me why you would possibly want to take a
child that young across an ocean. Through the 13 hours in the sky there was almost constantly a baby
crying somewhere, which made a 13 hour flight more tedious and long than it
already was.
At the beginning of the flight I had to use the restroom, so I got up and walked to the back of the plane. I saw one that was vacant, but the door was so small that I wasn’t sure how to open it. I grabbed what looked like a handle and pulled, to reveal an empty ash tray. I took a step over and stood examining the door for a moment before a higher toned expressive male voice lisped, “You’re supposed to push.” I repeated, “Push?” more out of surprise than anything, and the male flight attendant peered his balding head around the corner, made a sour face and said…”Where it says push…” as if it should be obvious. I immediately viewed the tiny instruction on the door and was able to get in, though I thought the flight attendant was a little bitchy, as only gay men seem to be able to do… not to imply that he was gay, because I would have no way of knowing. I did not see him having sex with a man on that flight. When I came out of the bathroom the man said, “Oh, don’t worry. Ninety percent of the people on this plane have trouble with that…of course they’re all Japanese or Chinese and can’t read English. At least you didn’t open the ashtray.” I informed him, embarrassed and laughing that I had opened the ash tray moments before he told me to push. He chuckled slightly, seemingly pleased that I was such an idiot and said, “By the way, there’s a closet on the other side of the plane. Don’t pee in it.” I should have.
When we finally got to Fukuoka after a brief stop in Osaka,
we were exhausted and felt very haggard. As we collected our luggage and stepped into the airport lobby we
couldn’t help but notice how stylish all of the Japanese people looked. The guys had longer hair, almost mullet-like,
that had the sort of messy bed head look that takes hours to perfect. The girls were wearing sweaters, tiny skirts
or short shorts with knee high boots. If
Japanese girls were curvy enough to have butt cheeks, they would have been
hanging out of the shorts and skirts. I
kept seeing girls with heavy coats, bare legs, short skirts and tall
boots. In America, we would call that
whorish. Here I guess it’s stylish.
We waited for Cassie for about an hour, exhausted, wondering if she was going to pick us up. All of a sudden, Cassie was standing right in front of us, looking extremely distressed. I gave her a big hug and noticed that she, though not dressed whorish, looked very stylish in a Japanese way. She had full bangs across her forehead, which she hadn’t had since she grew them out in 4th grade. She was wearing a cute pair of blue jeans, a long sleeved black and white striped shirt under a pink short sleeved shirt and a khaki colored short sleeved jacket with a thick belt on it above the waist, though undone. She was very upset that she had trouble finding us and vice versa, but we were happy to jump past it and get to our hotel.
We had to get two cabs, due to the large amount of luggage we had brought… I always tend to pack way more than I need. When I went to Montreal for three weeks for my class, “Advanced French Conversation in Montreal,” our professor told us to pack
light because we would probably be lugging our luggage all over town and up
stairs. I knew that wasn’t going to
happen, I am not good at packing light. My classmate Meredith was going to be my roommate in Montreal and she was very high maintenance,
so she of course would also not be packing lightly. I had done laundry before packing and packed
all of it, and Meredith and I were definitely in competition for having the
heaviest luggage. When we got there and
unpacked I found that I had about 3 or 4 semi-nice (as in no holes or stains)
shirts and 2 or 3 pairs of pants. The
rest included about 15 sets of scrubs and t-shirts and a couple of
sweatshirts…otherwise known as my pajamas. At the end of the trip we gave each person an award, and mine was “The
most likely to bring enough pajamas to clothe a small nation.” That was a proud moment.
We decided to put 2 people and more luggage in one taxi and 3 people and less luggage in the other. I immediately said that I was going with Cassie, and she decided that we would be the taxi of 2. The taxi driver was a small man, though average for Japan,
about 5’5” and he popped the trunk and attempted to lift my bag. He got it about 6 inches off the ground and
dropped it. I watched and slightly
chuckled at the sight of this little man trying to pick up a bag that quite
possibly weighed more than he did. Cassie chuckled a little, then immediately covered her mouth, started
bowing, and giggled loudly behind her hand while apologizing profusely in
Japanese. It was very shocking to me to
see Cassie doing this, since she was never the “giggling type” and it was not
that uncommon for the two of us to have a light chuckle at the expense of
another’s difficulty. However, this
action did appear very Japanese.
November 20, 2007 in Travel | Permalink | Comments (1)