Beyond the Ieop and Me: The Life, Death and Aftermath of an Autistic or Mentally Challenged Individual
204
Beyond the Ieop and Me: The Life, Death and Aftermath of an Autistic or Mentally Challenged Individual
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Product Details
| ISBN-13: | 9781496971715 |
|---|---|
| Publisher: | AuthorHouse |
| Publication date: | 04/06/2015 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 204 |
| File size: | 914 KB |
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Beyond the IEOP and Me
The Life, Death and Aftermath of an Autistic or Mentally Challenged Individual
By Terri Moore
AuthorHouse
Copyright © 2015 Terri MooreAll rights reserved.
ISBN: 978-1-4969-7170-8
CHAPTER 1
AUTISM
Autistic people have abnormal mental developments and therefore can have a tough life as it relates to communicating their wants and needs. Telling my brother-in-law, Clarence, one time to put the stamps on my envelops that I was going to mail my 70 Christmas cards left me laughing out loud as I watched him take the entire roll of stamps and put them on the entire stack of envelops. These are communication lapses that continued day after day and several times in one day in the life of John Clarence Moore also known as Clarence or Clarence, my brother in-law.
Almost like speaking another language Clarence rarely understood instructions, and even if he could follow instructions on one day, the next day he would not recall and do a task entirely different. Asking him to go into another room and get a towel may get you a pack of paper, or getting a paper bag out of the garage may get you a shovel. My husband always said that when he helped not only would you ending cleaning up behind Clarence, but then you would have to do the task in its entirety alone usually with him watching. Plus, you would have to clean up the mess that he created which was usually a time consuming chore to correct. Sometimes you would wonder whether or not he was trying to be deceitful, but there was no definite measure of knowing.
In spite of his inability to follow directions, his companionship and presence of interest was comforting. He always found the good in people and his first words were always positive. When I first met Clarence some 15 years ago, we were at the Parma Town mall shopping. Clarence was in a group home recovering from a stroke. Suddenly out of nowhere, Clarence came running past us standing in the corner of the food court brooding. We had no idea that his group was on a tour of the mall when we recognized him. Out of the corner of my eye I saw a shadow running after him, although his defiance kept my eyes spellbound to watch his next move. An aid chased him and not knowing we were his family said, "He's not happy because he wants more ice cream." That one statement embellished Clarence's daily goals, food, desert an oral fixation that matches none.
Clarence was unique. His presence was very still and quiet and if you weren't looking around the room, you could miss him. His every move was as quiet as air. He usually very inaudibly went around the house opening up every package, container, closet, cabinet, bag and drawer putting holes in them as he wheeled through. Whether or not the containers were gifts or garbage about to be sent out, new items packed for return, or boxes and packages that just arrived, Clarence put a hole in it. Sometimes he immediately toted the newly bagged or boxed items out to the road. Later on in his years when he did require diapering, we received several boxes of diapers for him. When he passed on, we went to give them away to charity and every single bag inside the boxes had been opened with only one diaper removed. These types of acts surely were frustrating for the entire family.
My sister Gaye told me, as she thinking looked into the air and arrived at her diagnosis for him, that "There is a disconnect somewhere in Clarence's thinking." Little did I realize how correct she was? WebMD says that "autism is a brain disorder that makes it hard to communicate and relate to others. With autism, the different areas of the brain fail to work together. Most people with autism will always have trouble relating to others." And that he did. Clarence could not relate to others, at least not after formal greetings and small talk. When he went to adult daycare, I would ask him about how many friends did he make? He would somehow describe people to me. When I asked what their names were. He never knew names. I asked him why he didn't know his friends names. He would say something like, "I just have to be patient".
CHAPTER 2EATING
Clarence ate everything. My neighbor told me that he was eating nuts one day. I asked my husband, "Where is Clarence getting nuts?" He replied, "Clarence eats the buckeyes that fall from the trees in the yard." Sure enough, I found it true. In the fall, which is the season in Ohio that the buckeyes develop and fall after ripening. Then Clarence, as he takes his afternoon seat on the deck, or hides in the cubby below the deck, pleasantly plucks the buckeyes that have fallen to the ground and then eats them? You could see him eating them, one at a time with a pleasant and satisfied look on his face. This happened so consistently that when he passed on when we read something in his autopsy report it mentioned that he had some type of diverticulitis. "Diverticulosis is caused by eating too many nuts" an official told us. But details of the autopsy will be revealed later and you can judge for yourself whether or not you think that it is a result of eating too many nutlike foods or buckeyes in his case.
Other times Clarence ate strangely. One time my husband was prescribed medicines to even out his heartbeat. My husband kept the prescription on the kitchen table. One morning, we were about to eat breakfast. I was bustling around the kitchen preparing coffee, eggs and the like when my husband was lining up his prescriptions to take them. Abruptly he announced "I only have two pills left." I replied, "Of what?" He said "My prescription." My immediate thought was that he surely was confused. A few minutes later, Clarence staggered into the room much like a drunk on a binge, taking huge uneasy and sloppy steps. "Clarence, did you take the medicine on the table?" I asked. He continued bouncing from wall to wall as he approached, droopily, mouth slurred more than usual, and "ahhh-Yes". Confusion came to mind. "Did he really take someone else's medication?" I thought. Then I asked, "Clarence, why did you take your brother's pills?" He said in the same monotone utterance, "My stomach hurt." Okay now he's not only five, but self-diagnosing? The answer to these unusual digestive pains was not a figment of his imagination we found out later.
There were no ends to what Clarence would eat. I found empty large, packages of what used to be frozen chicken, uncooked, frozen chicken to be exact in the garbage can. No one else had cooked. It was not borrowed. The only place it could have gone is into Clarence's digestive system. There was no other place uncooked, frozen chicken went which is the natural assumption. This happened on at least two occasions in the 14 year tenure that I observed Clarence. The one that I remember most vividly in the morning after it disappeared, Clarence walked into the kitchen in the morning with obsessive flatulence. Eat step he walked sounded as if he was in a puddle with a quacking duck following behind. A couple seconds later the foul smell emerged much like a sewer surrounded the room smothering us all. I looked down, saw that his foot track left a large smudge of would look like a watery chocolate brown fluid. Oh no, but yes it was feces. Yes, Clarence had violent diarrhea. I watched holding my nose as he walked out of the door, up the driveway to the mailbox and back. Clarence with his mechanically slow almost even footsteps continued on his usual trek to get the paper. Only this time he was leaving piles and piles of feces as he gracefully and diligently stumbled to the mailbox. The trail was so foul, so long, and so unimaginable if I had not observed it myself. I had to find the hose attachment, screw the attachment to the actual hose, turn the water on from in the huge slick black leather chair and hose off the garage floor, driveway and street leading to and from our mailbox at 6:00 in the morning. What a mess to wake up to and deal with. And, I thought I was going back to bed. Then why spend hours lecturing to Clarence when ultimately, he could not conceive what you are talking about. He didn't understand, at least I didn't think he understood. Plus it happened again.
A family event including Clarence was told to me. Uncle Jackie (Maurice's next younger brother) flew in from Los Angeles for the Christmas Holiday one year. Maurice excited to see his little brother meticulously planned to go to the Soul Food Supermarket and buy authentic ingredients to prepare a special treat for the three of them. So Maurice drove way past the usual 3 miles in his own neighborhood and went about 15 miles to Dave's Market and bought a 10 pound bucket of "chitterlings". Those of you that know anything about "chitterlings" know that they are pig intestines. As you can imagine, intestines are filled with all types of debris. After all, when pigs are slaughtered there is no fool proof method of ridding their bodies of digestive materials. And who knows what the time frame prior to their slaughter was for their meal times. Although nowadays you can get chitterlings already cleaned in some specialty soul food stores, you could not then, or at least not in that area. We have heard it said that you can wash them in the clothes washer but not Maurice, he wanted them clean. So Maurice spent laborious hours picking through the uncooked chitterlings to detach and rid inch by inch, centimeter by centimeter, the odorous, slimy, foul looking waste matter of whatever was partially digested from the pig's prior meal. Maurice stood over the kitchen sink (a double sink with washing tubs side by side) washing them and removing them from one sink to the next sink for a little over 3 hours. It took the majority of the Friday evening for Maurice to clean the chitterlings. Bending over the sink, breaking a sweat, washing and draining the sinks each about "7 times" he remarked. Finally when no more floating particles rise to the bottom or top of the sink from one draining and swishing to the next, the chitterlings are clean. Out came his slow cooker (some call it a crock pot). Maurice plugged in the cooker for about 20 minutes prior to placing the delicious brew into the container that was in the huge slick black leather chair. Chitterlings have a strong and pungent and unusual smell that permeates the entire house much like a flatulent bag of popcorn, yet many think they are an awesome treat. Anyway, he put the chitterlings in the pot, sealed the pot on slow along with some chopped up onions, green peppers, salt, black pepper, and garlic and let them take their course to a wonderfully planned "fiesta". The chitterlings cooked all Friday night. The next day Saturday, Maurice and Jackie could smell the succulent treat that they were awaiting. They decided to have them after church on Sunday, so they let the chitterlings cook overnight again. Sunday morning they rose early and scurried to church trying to ignore the temptation to test, see the status of, or monitor the chitterlings. When they arrived home, they three still did not immediately invade their succulent treat of chitterlings. Instead, Maurice fixed some Cole slaw and hot water corn bread. When the slaw and corn bread was ready and only then did he go into the huge slick black leather chair retrieving the slow cooker and its rare cuisine of choice. Not noticing that the cooker was lighter, the table was set the slaw and corn bread awaited and they three went to dig into their long awaited treat. Maurice had set the table with the finest of genuine silver utensils, chalking white and elegant china that was a gift a prior year from a rich relative. The two older brothers bantered back and forth deciding who would be the first to dip into this scrumptious, delectable treat. Okay, so Maurice being the oldest, and the oldest being the most revered was the chosen brother to dip into the feast at first. And dig in he did. As Maurice dipped his serving spoon into the large bowl and drew it up the large, he found only broth (old timers call it pot liquor). No problem, he could dip the spoon deeper. So thinking he was just too shallow, he dipped again deeper to the bottom of the ceramic succulent filled cooker only to find particle free broth again. The mystery waited. What was Maurice missing? Suddenly his brain clicked (as I was told). He became agitated. What happened to the chitterlings? Could they have cooked out? Do Chitterlings vanish into vapor as doe's fog? Was there a leak? D id the dog bump into the container causing a usual loss of liquid to which there was no answer? Oh wait, they had no dog. Then Maurice thought ... Maurice saw no leak on the floor coming from the huge slick black leather chair where the entire 10 pounds had cooked for over 48 hours. No, Maurice did not drop anything on the floor as he came up. Surely Maurice would have felt or noticed splashing or drool if the container had leaked. A thought came to Maurice as his eyes became affixed on Clarence who was sitting on the other side of the neatly groomed and well set table. Then Clarence's eyes lowered as he tried to exit the room quietly. The thought came like thunder intruding his mind. Maurice realized what had happened. Clarence had eaten the entire 10 pound cooker of chitterlings. He had eaten every bit of them. Did he eat them with his hand? Did he eat them with a fork? Did he eat them with a spork? This was only one of many stories where Clarence spoiled everyone else's meal.
There was something innate about how food affected Clarence. If you stop for a moment and think about it, he had no other natural pleasure. For Clarence was never married, didn't continue reading regularly, and actually had very little pleasures. My guess is that he stayed stuck on the same communication of oral gratification that he had as a newborn baby. Consider how the child suckles for the milk and food while they are young. Clarence's attachment to food and suckling seemed similar.
CHAPTER 3CLARENCE GOES TO COLLEGE
At one point when I was trying to expose Clarence to various cultures and lifestyles thinking that it would improve his esteem, I had to buy a book for study or a class I was taking. After calling around I found out that the nearest community college had the book in its inventory. So, I told Clarence that I was going to take him to college.
"Clarence? Are you ready to go to college?" I asked him after he had eaten breakfast and ready for the routine Friday outings. "Ah Yessss ..." He answered, stammering with confusion. After bustling around the kitchen and putting dishes away and shouting out a few orders to other family members getting things in order, we finally packed ourselves in the SUV and drove to the Eastern Campus of the nearest community college that I had prior phoned. I got out of the car and started walking purposefully towards the community center. After about ten feet, I looked behind to see that Clarence was there and he was. As usual he was walking about ten feet behind me with his eyes focused on my back as if I was a target. His feet were so large I could see the bottom of his shoes with each step. his gait was wide open, his head tilted downward. When I think back he actually resembled a two year old toddler. his leg span was wide as he stomped each foot. You could imagine what it would look like if he fell as you could imagine a toddler falling. I turned back around walking purposely forward. A thought came to my head about the time when I took him late to adult daycare and as he was walking behind me in the same way he was now a man ran up to me seriously reporting to me that "There's someone following you." My response was, "Yes, I know, he's my brother."
We arrived in the busy community center and I noticed that Clarence's head seemed to sink into his shirt. I could tell that he wanted to hide. And rather than dragging him through the lines in the bookstore, I asked him to sit in the neighboring cafeteria with some chips and a diet coke. There were papers on the table and he seemed contented to do so. I went and stood in the lines and purchased the book. When I came back to the table his head was deeply imbedded in the paper as if he was reading and studying the details and events he read. I asked him, "Clarence, is everything okay? Are you alright?" He replied, "Ahh ah ah I'm okay!" he exclaimed. I motioned for him to join me and we started walking, me in front and him ten feet behind. We paid the parking fee and went home. I could tell he was overwhelmed. The environment was too busy, too loud, and too big for Clarence. I thought back to the time when I first took him to adult daycare. When they called and told me that they had to put him in a room with only 8 people because he was "overwhelmed". I understood completely.
CHAPTER 4THE DOCTOR'S VIEWPOINT
For several years I took Clarence back and forth to his doctor for checkups, evaluations and treatment for small ailments and so forth. When I looked at his diagnosis, the doctor wrote in the space next to it that Clarence was "mentally challenged". Every time I think about it, it makes me angry. In many social circles to be called "mentally challenged" is an insult, yet the doctor clearly wrote it on his chart. When I asked about his health, she always said everything was fine. Albeit, when he laid on the table with his head about six inches above the table, she still professed his stable and regular health status. Here comes Clarence, walking and talking like some kind of toddler. He panted when breathing sometimes very close to how an earlier dog we had panted with his tongue out about halfway down his throat. The pant was so loud that when I was on the phone with my mother one time she proclaimed out of nowhere that she could hear the dog breathing in the background. Another diagnosis that the doctor had included about Clarence's condition is that he had "edema" because sometimes the lower part of his legs would swell. One time when he got a cut in the yard from a bush and a friend had to pull him out of the bush, it would not heal. It took observing and after about a week and Clarence getting a high grade fever, we took him to the emergency room. Clarence never admitted to being uncomfortable. Not before going to the hospital, not during the hospital and not after. But they kept him for about three months. The sore on his leg which started out at about a 2 inch cut-like abrasion, turned into a circular deteriorating, yellowish blistering, baseball sized wound with redness around the perimeter.
(Continues...)
Excerpted from Beyond the IEOP and Me by Terri Moore. Copyright © 2015 Terri Moore. Excerpted by permission of AuthorHouse.
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Table of Contents
Contents
Preface, vii,Autism, 1,
Eating, 4,
Clarence Goes To College, 10,
The Doctor's Viewpoint, 12,
Disconnected, 14,
Discussions with Clarence, 38,
Clarence's (CLARENCE) Journals, 63,
Obituary, 167,
Missed, 171,
Appendixes, 177,
References, 179,