When I was diagnosed with Hodgkins disease, I had only heard of one other person who had it. His name was Brandon Tartikoff and he was president of the NBC television network and occasional guest star on the hit TV show, ALF. He had been diagnosed with Hodgkins, treated and then went into remission (if you can call it that, because Hodgkins tends to come back). Fifteen years later, the cancer returned and he died. After I got my biopsy results, all I could think of was "If Brandon Tartikoff couldn't beat it, with all his millions of dollars, what hope do I have" (no pun intended). Suddenly, I was looking up everything I could find on Hodgkins. I read one person's blog in which he described sitting in a chair in the infusion room, getting his chemo and being so out of it, he wet his pants. I could scarcely contain my horror at the thought of losing my bodily functions. I sank into a deep depression and decided there was no sense in trying to sugar-coat it; I was going to die. My 3 year old son would only have someone else's memories of me because he was too young to have his own.
I went back to work and one of my coworkers came up to me to express how sorry he was. I was in a stupor, none of this seemed real. I told him not to feel bad, it would be OK. My natural tendancy to comfort others, while my mind was reeling. I went about my work duties in a fog.
When I got home, my husband told me he spoke with our local pharmacist and the pharmacist had Hodgkins, too. He encouraged me to talk with him. Dana, the pharmacist, told my husband I could come in anytime and he would talk to me about what he was going through. Dana was on the last month of treatment, and had gone through everything I was anticipating. So I went to the pharmacy and talked with Dana. He told me chemo and radiation treatments were no day at the beach, but they weren't as bad I what I read, either. After speaking with him and seeing him function normally, albeit with no hair, I began to be optimistic. I went home and looked up Hodgkins on the internet again and this time, I found a blog that was more promising. I also found out about chemo side effects, which was good, because doctors are more focused on the actual treatment of the disease, instead of what happens to your body while you are treated. For example, I found out that you don't just lose the hair on your head, you lose hair other places, too. That's why my nose ran like a faucet. When I questioned the doctor, he said he didn't know why my nose ran non-stop, but through my reading and questioning some nurses, I found out that I lost my nose hairs, too and there was nothing to keep my nose from running. Not a pretty picture, but it is what it is.
I also found that one of the side effects of chemotherapy is depression. No one told me that. I couldn't understand why, when I was half-way through my treatments, I was so depressed. I thought I would see the light at the end of the tunnel and feel elation, but I didn't. So I read some more about chemo side effects and also read a book called, "Cancer Combat" and found that depression is a common side effect of chemotherapy. I wasn't so unusual after all!
All in all, I have survived 12 years cancer-free. I am healthy and strong, and feel like I have a pretty good outlook on life. I think when you go through a challenge like cancer or any other life altering event, it defines you. Cancer defined me. I am part of a exclusive group; that of cancer survivor. But I think by taking my situation in my own hands and researching my condition and not relying on the knowledge of others, I created an empowerment that helped me navigate through what could have been an overwhelming situation.
Wednesday, February 8, 2012
Monday, February 6, 2012
Background 2
My oldest grandson is 9 years old. His name is Eric. He is a sweet, caring little boy who always has a hug for his grandmother (me). Eric loves butterflies, and has an encyclopedic knowledge of them. Eric is also autistic. He was diagnosed when he was 3 years old. The first diagnosis was made in Germany, where my son-in-law was stationed in the Army. The initial diagnosis was "pervasive developmental disorder" and later, when my daughter and her family returned stateside, Eric was diagnosed as autistic. I know a little about autism, having read articles and watched television programs about the disorder, but the one thing I don't know: how he will be affected as he grows up? Will he be able to live on his own? Will he be able to hold a job? Will he be able to raise a family? Will "normal" people see Eric as a person similar to them? I decided to do my Isearch on the challenges facing autistic children as they enter the adult world.
One winter evening, I was sitting in my recliner, watching my 8 month old grandson play with a puzzle. Having raised 5 of my own children, I was somewhat familiar with typical 8 month old behavior. When my children were given a toy to play with, it typically went directly into their mouths and at the most, held their attention for about 5 minutes before they moved onto something else. Not so with Eric. Eric sat quietly on the floor, methodically removing the pieces from their frame, then lining them up end to end on the floor. Eric sat for an hour or more lining up the puzzle pieces. My daughter remarked how smart he was, and I agreed, but I saw something else that made me pause. Could Eric be autistic? I knew from my reading that one trait of autism was the methodical lining up of items, end to end, in an orderly, precise manner.
Previous to Eric's diagnosis, I encountered two individuals diagnosed with autism. One was a young girl about 5 or 6 years old. The little girl thrashed about, kicking and screaming. She made no eye contact and could not be controlled by her grandmother, whom she lived with. The child's mother was unable or unwilling to care for her so it fell to the child's grandmother to provide her with a home. The second person I encountered was a young man about 20 years old who came into the Department of Human Services to apply for food stamps. His mother, who accompanied him, explained that he lost his job because of his "condition". He told me he had "ass-burgers" and I thought his condition must be Tourette's Syndrome. I later read an article in "Time" magazine that talked about Asperger's and realized this is what the young man was talking about. Two children diagnosed with autism, two very different behaviors.
My grandson falls closer to the young man (thankfully) than the girl. I have decided to focus on what opportunities are available to Eric as he matures. How will he navigate this crazy world as he grows up? Will he find a job and are there agencies that can help make the transition from child to adult easier? Can he be self-sufficient? These are some of the questions I hope to find answers to, to be able to support Eric as he grows into adulthood.
One winter evening, I was sitting in my recliner, watching my 8 month old grandson play with a puzzle. Having raised 5 of my own children, I was somewhat familiar with typical 8 month old behavior. When my children were given a toy to play with, it typically went directly into their mouths and at the most, held their attention for about 5 minutes before they moved onto something else. Not so with Eric. Eric sat quietly on the floor, methodically removing the pieces from their frame, then lining them up end to end on the floor. Eric sat for an hour or more lining up the puzzle pieces. My daughter remarked how smart he was, and I agreed, but I saw something else that made me pause. Could Eric be autistic? I knew from my reading that one trait of autism was the methodical lining up of items, end to end, in an orderly, precise manner.
Previous to Eric's diagnosis, I encountered two individuals diagnosed with autism. One was a young girl about 5 or 6 years old. The little girl thrashed about, kicking and screaming. She made no eye contact and could not be controlled by her grandmother, whom she lived with. The child's mother was unable or unwilling to care for her so it fell to the child's grandmother to provide her with a home. The second person I encountered was a young man about 20 years old who came into the Department of Human Services to apply for food stamps. His mother, who accompanied him, explained that he lost his job because of his "condition". He told me he had "ass-burgers" and I thought his condition must be Tourette's Syndrome. I later read an article in "Time" magazine that talked about Asperger's and realized this is what the young man was talking about. Two children diagnosed with autism, two very different behaviors.
My grandson falls closer to the young man (thankfully) than the girl. I have decided to focus on what opportunities are available to Eric as he matures. How will he navigate this crazy world as he grows up? Will he find a job and are there agencies that can help make the transition from child to adult easier? Can he be self-sufficient? These are some of the questions I hope to find answers to, to be able to support Eric as he grows into adulthood.
Sunday, February 5, 2012
Isearch Motivation and Questions
The motivation for my paper on autistic children transitioning into adulthood is that I have an autistic grandson. He is nine years old, very sweet and smart. But as he gets older, I wonder how society will view him and how he will navigate what could be a confusing world. Many children who are autistic interact differently with people. For example, they may take comments more literally than intended, missing the meaning of a joke or some subtle comment. These are some of the questions I hope to answer:
- How does the public school system help autistic children in socialization with their peers?
- What are some of the outside supports available to children
- How do these supports help prepare them to face the adult world
- What are some of the vocations that autistic adults can excel in
- What kinds of therapies may help them adapt to the adult world
- How can Eric function independently as he matures
I hope by answering these questions, I can better support my grandson as he gets older and more independent.
Saturday, February 4, 2012
Background
One winter evening, I was sitting in my recliner, watching my 8 month old grandson play with a
puzzle. He sat on the floor, took the puzzle pieces out of the wooden frame and methodically line
each piece up, end to end. My daughter remarked how smart he was and I thought so too,
considering how young he was. But something else entered my mind too: could Eric be autistic? I had read an article that said one of the signs of autism was lining items up in an orderly, precise manner. I raised 5 children with my husband. We have three girls and two boys. My experience was when they were Eric's age, if you gave them a toy, such as a puzzle, they would immediately put it in their mouths. Or throw it, or wave it about. None of them would have sat quietly, for an hour or more, placing the pieces end to end.
I had little experience with autistic individuals, but "Time" magazine had recently featured
autism in a special issue. I had only come in contact with two individuals who were autistic. One
when my oldest daughter was about 3 or 4 years old. An old woman in our church had offered to
give me some hand-me-down dresses that her granddaughter had outgrown. She explained to
me that her granddaughter was autistic and when I went to her house, I found out what she
meant. The little girl was about 6 years old and she thrashed around, kicking and screaming.
The grandmother explained that her daughter was unable or unwilling to care for the child, so
the grandmother stepped in. She told me how hard it was to manage the little girl and that the
dresses she gave me was specially made for her granddaughter, but she hardly ever wore them
because the grandmother couldn't take her anywhere.
puzzle. He sat on the floor, took the puzzle pieces out of the wooden frame and methodically line
each piece up, end to end. My daughter remarked how smart he was and I thought so too,
considering how young he was. But something else entered my mind too: could Eric be autistic? I had read an article that said one of the signs of autism was lining items up in an orderly, precise manner. I raised 5 children with my husband. We have three girls and two boys. My experience was when they were Eric's age, if you gave them a toy, such as a puzzle, they would immediately put it in their mouths. Or throw it, or wave it about. None of them would have sat quietly, for an hour or more, placing the pieces end to end.
I had little experience with autistic individuals, but "Time" magazine had recently featured
autism in a special issue. I had only come in contact with two individuals who were autistic. One
when my oldest daughter was about 3 or 4 years old. An old woman in our church had offered to
give me some hand-me-down dresses that her granddaughter had outgrown. She explained to
me that her granddaughter was autistic and when I went to her house, I found out what she
meant. The little girl was about 6 years old and she thrashed around, kicking and screaming.
The grandmother explained that her daughter was unable or unwilling to care for the child, so
the grandmother stepped in. She told me how hard it was to manage the little girl and that the
dresses she gave me was specially made for her granddaughter, but she hardly ever wore them
because the grandmother couldn't take her anywhere.
The next person I met with autism was a young man about 20 years old. He came into the
Department of Health and Human services to apply for food stamps. His mother explained that
he lost his job due to his condition. He told me he had "ass-burgers" and I thought he might
have Tourette's Syndrome and just blurted out whatever. That would get him fired, right?
Anyway, I later read the "Time" issue and discovered what the young man said was Asperger's,
not ass burgers. He was quite different from the little girl I met years ago.
Department of Health and Human services to apply for food stamps. His mother explained that
he lost his job due to his condition. He told me he had "ass-burgers" and I thought he might
have Tourette's Syndrome and just blurted out whatever. That would get him fired, right?
Anyway, I later read the "Time" issue and discovered what the young man said was Asperger's,
not ass burgers. He was quite different from the little girl I met years ago.
As I sat there watching my grandson ever so carefully line up those puzzle pieces, I couldn't shake the feeling that he might be autistic, too. I delicately mentioned it to my daughter who told me someone else had broached the subject with her. My daughter seemed a little unsure and I suggested she read the issue of "Time" that I read.
Several years later, my hunch turned to reality as Eric was diagnosed with "pervasive developmental disorder" which is on the autism spectrum and later autism. He was diagnosed at the age of 3. Eric is 9 years old now and is a very sweet, loving boy. But as he gets older, I know he will face difficulties with peers who may not understand his differences. My daughter told me of one instance where a friend of Eric's came over to play and brought one of his friends with him. The boy played in Eric's house, but told Eric's friend that he didn't want to play with Eric because Eric was "weird".
So that is why I have decided to look into autism and what barriers face these children as the become adults. What sort of jobs await them? How will they interact with society and how will society react to them? How do our school systems prepare them for adult life?
Thursday, February 2, 2012
Graf 10
She shouldn't be here. Everytime I see her, I seethe. She is a poor worker; everytime she does a task, it has something wrong with it. An interview for welfare benefits? She forgets to ask about the absent parent. A food stamp interview? She forgets to go over reporting responsibilities. These are not some sort of addendum to the interview, they are the basics. She doesn't have the experience and initially didn't even get a score high enough to secure an interview. With all the qualified candidates to chose from, the program manager decided to hold the position open so she could contest her score and get one high enough for an interview. The program manager was seen meeting with her everyday until she got her final score. She interviewed and got the supervisory position. No one in the office can stand her, she is a true example of the phrase, "Screw up, move up". She has no understanding of the job and how hard it is because she didn't manage a full caseload when she was a worker. So now I am evaluated by someone who doesn't have my experience and doesn't fully understand what the job entails. Everytime I see her standing there with her little clipboard, I want to yank it out of her hands and throw it out the window.
The other day, she called me into her office. "Hope, it looks like you forgot to make a note on this case. Do you remember what this case was about?" I look at her vaguely and tell her I and my coworkers saw over 100 people on intake that day. No, I don't remember. She looks concerned and replies, "I am worried that you can't remember this particular person." I am flabbergasted that she can't understand that when you see 100 people in a day, they all run in together. But when you've never managed a full caseload, you can't be expected to understand.
I try to have a good attitude and be a team player, but it is hard when you work for someone who doesn't know as much as you do about the job and isn't as qualified. Call it sour grapes, if you want, but I didn't apply for the job, so it isn't because I wasn't chosen, it is because she just isn't qualified. And when a person who isn't qualified is hired for a job, it brings down the morale of the office because they never quite grasp the trials that go with the job. And rest assured, she doesn't.
The other day, she called me into her office. "Hope, it looks like you forgot to make a note on this case. Do you remember what this case was about?" I look at her vaguely and tell her I and my coworkers saw over 100 people on intake that day. No, I don't remember. She looks concerned and replies, "I am worried that you can't remember this particular person." I am flabbergasted that she can't understand that when you see 100 people in a day, they all run in together. But when you've never managed a full caseload, you can't be expected to understand.
I try to have a good attitude and be a team player, but it is hard when you work for someone who doesn't know as much as you do about the job and isn't as qualified. Call it sour grapes, if you want, but I didn't apply for the job, so it isn't because I wasn't chosen, it is because she just isn't qualified. And when a person who isn't qualified is hired for a job, it brings down the morale of the office because they never quite grasp the trials that go with the job. And rest assured, she doesn't.
Graf 9
I love to go to antique car shows. Not that I go very often, but when I do, it transports me to another time; my childhood and my dearly departed grandfather. Grampa owned a Model A Ford, two-door with two front seats and a bench seat in the back. You had to crawl over the front seat to get into the back. I don't know when he obtained the car; it seemed to always be there, like Grampa, when I was growing up. I have an old black and white picture of my father, his older brother and two older sisters hanging out of the car when they were young, so Grampa had it for quite a while. That car was versatile; it hauled kids, potatoes, firewood and just about anything else you could imagine.
Grampa came to this country as a young man, from Lithuania. He didn't speak English and learned what he knew from a job at a lumber camp, so his English was more expletives than the king's English. But he had a good heart and would help anyone in need. Our family lived across the road from Grampa and I remember one rainy day when the bridge below our house washed out. My mother asked my grandfather if he would pick us up from school in the old Model A. I was probably about 9 or 10 at the time. My sister and I thought it was great fun to ride in the car, no one else in town had one like it. We asked him to honk the horn. Aa-ooo-ga, aa-ooo-ga, the horn would bellow and we would laugh at the reactions of our friends. All eyes were on us and we enjoyed the attention.
As I got older, I am ashamed to say, that attention became unwanted. Most teenagers don't want to appear different from their peers and I was no exception. I was kind of skinny and awkward and not part of the "in"crowd, so tried to draw as little attention to myself as possible. But my grandfather continued to ride through town in the Model A, honking the horn and yelling out the window, "Get a haircut!" and a few other choice words to any boy with hair below his ears. It became an embarassment to me. One day, I was coming around an isle at the local Shop-N-Save where to my horror, I saw my grandfather with his arm around my high school History teacher's shoulder, admonishing him with, "Johnny, Johnny, Johnny, you need a haircut!" Mr. Glover seemed to know my grandfather and looked rather bemused by it all, but I quickly retreated down another isle before Grampa could spot me. I was so humiliated and my relationship with my grandfather became cold and aloof.
Now I look back on those times and feel ashamed that I let my discomfort get in the way of my relationship with Grampa. He was very good to our family, providing a home when we had none and putting up with our family's idiosyncrasies; but when you are young and self-absorbed, you don't always think of another's perspective. Since Grampa died, I have had a chance to think about what it must of been like to come to a country where you know no one and don't speak the language. What it must be like to take care of your wife who has Alzheimer's and doesn't recognize you anymore. What it was like to be determined incompetent to drive and have to give up your license and your beloved Model A. And now, when I see an antique car, I am filled with nostalgia about my grandfather and try to remember the times when I was young and less self conscience.
Grampa came to this country as a young man, from Lithuania. He didn't speak English and learned what he knew from a job at a lumber camp, so his English was more expletives than the king's English. But he had a good heart and would help anyone in need. Our family lived across the road from Grampa and I remember one rainy day when the bridge below our house washed out. My mother asked my grandfather if he would pick us up from school in the old Model A. I was probably about 9 or 10 at the time. My sister and I thought it was great fun to ride in the car, no one else in town had one like it. We asked him to honk the horn. Aa-ooo-ga, aa-ooo-ga, the horn would bellow and we would laugh at the reactions of our friends. All eyes were on us and we enjoyed the attention.
As I got older, I am ashamed to say, that attention became unwanted. Most teenagers don't want to appear different from their peers and I was no exception. I was kind of skinny and awkward and not part of the "in"crowd, so tried to draw as little attention to myself as possible. But my grandfather continued to ride through town in the Model A, honking the horn and yelling out the window, "Get a haircut!" and a few other choice words to any boy with hair below his ears. It became an embarassment to me. One day, I was coming around an isle at the local Shop-N-Save where to my horror, I saw my grandfather with his arm around my high school History teacher's shoulder, admonishing him with, "Johnny, Johnny, Johnny, you need a haircut!" Mr. Glover seemed to know my grandfather and looked rather bemused by it all, but I quickly retreated down another isle before Grampa could spot me. I was so humiliated and my relationship with my grandfather became cold and aloof.
Now I look back on those times and feel ashamed that I let my discomfort get in the way of my relationship with Grampa. He was very good to our family, providing a home when we had none and putting up with our family's idiosyncrasies; but when you are young and self-absorbed, you don't always think of another's perspective. Since Grampa died, I have had a chance to think about what it must of been like to come to a country where you know no one and don't speak the language. What it must be like to take care of your wife who has Alzheimer's and doesn't recognize you anymore. What it was like to be determined incompetent to drive and have to give up your license and your beloved Model A. And now, when I see an antique car, I am filled with nostalgia about my grandfather and try to remember the times when I was young and less self conscience.
Graf 8
My reaction to I-research. I read some of the other papers and am overwhelmed trying to come up with an idea that I haven't already read about. The paper about helping a child who is slow verbally, well, I've been there, done that. I watch a lot of HGTV so I don't have a lot of questions about home building, although if you saw my house, you'd think I should. I usually read up on anything that interests me. John Lennon? Ask me anything. Undiagnosed autism in adults? I've read a lot of theories about why the military and MIT have so many. I'm interested in the body-mind connection of exercise and why it helps depression, but I don't seem to know how to phrase the questions. I'm not a know-it-all, far from it, but when something comes up that I have an interest in and it pertains to me, I read about it. So I guess the best I can do is try to figure out how to find questions I want answered and try to come up with something. Very frustrating, especially since it seems to occupy a lot of my waking thoughts.
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