My brother has Fragile X Syndrome
My brother, Lee, has Fragile X Syndrome. He is also part of the Autism Spectrum. The Autism Spectrum encompasses many secondary diagnoses and goes from moderate, at one end, to severe at the other. The part of the Autism Spectrum that would best fit my brother's observable behavior and diagnosis is Mental Retardation or EMR. (Emotionally and Mentally Retarded).
Our parents secretly blamed each other for his Mental Retardation. Blaming each other caused tremendous friction between the two of them and in our home. The tension was so thick, one could taste it.
|They dragged my brother to
numerous Psychiatrists and Psychologists, and accepted the diagnoses they were given. How
different all of our lives would have been had they had him scientifically screened and
found out that neither of them was to blame--that Lee had a medical condition that could
not be helped. But, they went to their deaths, bitterly hating each other.
It was also "the times" we lived in that were to blame. Maybe Fragile X was a little known condition in the fifties. Maybe there were no definitive tests. Maybe he would still have ended up in the same inferior schools, thrown into classes with kids that had behavior problems, instead of going to schools with classes for kids with Special Needs--mainstreamed or not. Maybe if the neighbors and relatives and friends knew that he had a medical condition that had a real name and that he would not "infect" them or their children, they would have let him play with their kids. Maybe the kids wouldn't have teased him.
Maybe Nana (our grandmother) would not have called him a "Big Dummy". And, had he been born much later in time, maybe the elderly residents in his Senior Citizen High-Rise would have understood that he did not choose to be born this way. Maybe people would just have been nicer.
Please continue to read the story of my brother who has Fragile X Syndrome. These are his memories to the best of his recollection and mine, from his viewpoint and his childlike ability in the way he expresses himself.
I have placed my own notes in pink, to further clarify, whenever needed.
Click to learn about Fragile X Syndrome.
Hi. My name is Lee. I was born in 1950, so I guess that makes me about 61 years old. I'm a Senior Citizen, now.
When I was born, I had a mother, father and older sister. We did not have a lot of money, so our house was very small. My sister and I shared the same bedroom until I was eight. She was a teenager.
I cried an awful lot when I was a baby and kept my sister up most of the night. Mommy would come in and hold me. Sometimes that stopped my crying. Mommy always held me.
Daddy was a traveling salesman, so he wasn't around much. When he was around, he didn't have too much to do with me. If I got in his way when he was watching TV, he would slap the back of my head and tell me to get out of the way. He was a real good athlete and couldn't wait to have a son to play basketball with or baseball with. But, I didn't like that stuff too much.
So, maybe he didn't like me too much.
I mostly was with Mommy, my Sister and my Nana, who I later found out was my Mommy's Mommy. I didn't really understand the relationship between my Mommy and my Nana and my two Poppys and my Grandma and the whole rest of my family. They were just people that kept showing up at my house or who we visited. It was the same with uncles and aunts and cousins.
When I was about one, Daddy said that I didn't play with blocks and toys the same way that other little kids did. I was much "slower". Daddy said that I would stare at the blocks and turn them around and around. If I played with a puzzle, I never could tell where the pieces went, even on big wooden-piece puzzles. So, right away everyone started to see that I was "slower".
I had ears that stuck out. I was skinny.
I had some strange habits, too. I always wanted to hold onto something that was really, really sticky. I carried around a cough syrup bottle because it was so sticky. If I didn't have my bottle with me, I would lick and lick and lick one hand on the inside, until it was gooey enough to stick to my other arm on the wrist. My hands were always stuck together. That felt really good to me.
Lots of times, especially when I was excited or happy, I would flap my arms up and down as fast as I could. I didn't think about doing this and I couldn't stop doing this. It just happened. (See hand-flapping on photo at right.)
I had another habit. I used to stand at our glass door completely naked from the waist down. I don't know why I did that. I guess I wanted everyone to look and see me, especially that part of my body, which got very, very big when I was growing up.
Even though I could roller skate and ride a bike like the other kids, they didn't want to play with me. Their parents wouldn't let them play with me. That made my Mommy and sister very sad.
My Mommy was so sad that she didn't talk to the neighbors for a long time, even the neighbor who shared our half-double house. Why didn't they play with me? I wasn't mean or nasty. I was just different.
Mommy, and once in a while, Daddy, took me to special doctors to see what was wrong with me. The doctors made me play with blocks, puzzles and toys. They all said the same thing: If everyone else's brain had 10 cylinders, my brain had only 4. That doesn't sound too good, does it?
That doesn't sound like the
tests were testing the right things. My Mommy and Daddy must have spent a lot of money
just to hear that my brain had 4 cylinders.
That doesn't sound like the tests were testing the right things. My Mommy and Daddy must have spent a lot of money just to hear that my brain had 4 cylinders.
I watched all of the other kids leaving their houses and going to school. I wanted to go with them. It looked like they were having a good time. But, all of the doctors said I wasn't allowed to go to the same school as the rest of the kids. I had to go to a special school. I didn't know if that was going to be good or bad.
The special school was not near me. I couldn't walk to it, like the other kids. Mommy or Daddy had to drive me there and pick me up. It was very noisy in that special school. The kids ran around the room a lot and talked different. They said, "Beat your butt" a lot. So, I said it, too. When they ran around and screamed, I figured that was what I was supposed to do. It was sooo loud. It hurt my ears. There was a grown-up in the room, but she didn't do anything except scream at all of us and tell us to sit still and shut-up.
The best part of the day was when Mommy came to get me and bring me home. My Sister was there at home. She wanted me to play special games with her on the dining room table. She always had a new game that she made out of egg cartons or cups or soup cans. She said that the games would teach me to write my own name and help me learn the alphabet letters and numbers.
She was right. I did learn to print my own name. I did learn the alphabet. I did learn how to count to ten and I did learn what the numbers looked like. I always had trouble with numbers. I could count and I knew what the numbers looked like, but I could never figure out what 2 plus 2 was or how much money I should get back if I gave the Ice Cream Man a dollar and the Ice Cream didn't cost a dollar. My Sister said that if I didn't learn my numbers, I could get cheated. Well, I never learned them and I have gotten cheated a lot! Numbers just didn't make any sense to me and they still don't.
But, everyone said how strange that was because I could tell time, perfectly, at 2 years old. And when I learned to go to work by myself, I could tell when MY bus was coming and exactly which street-car I had to transfer to in order to get on the next bus that would take me near Goodwill. It was amazing, they said, that I knew how to do all of this without reading what the buses and street car said. I was very proud of myself because I could go to work and come back home--all by myself.
After dinner, my sister would play "Concentration" with me. She spread all of the cards in a deck out on the rug. She made a bunch of rows with the cards and laid them upside down. I would turn over one of the cards and turn over another one to see if they matched. I got really good at this game and won a lot of times.
We played "Old Maid", too and "Go Fish". I never wanted to be the Old Maid! She was ugly! When we played Go Fish, I had as many piles as my sister and, sometimes even more.
Remember when I said that I wasn't allowed to play with the other kids, which I guess was because I only had 4 cylinders? Some of the kids were not very nice to me. They would come over onto our lawn or driveway and call me names like "Retard" and say I had Cooties. This made my sister Judi very, very angry. She would try to run after them to keep them away from me. One time, a bunch of boys threw her down on the cement and started to punch her all over. She didn't cry. She kicked them and tried to punch them back. She was bleeding. Mommy came out and took us both into the house.
She yelled at me and told Judi to never get into a fight again. But, Daddy told Judi: "Give 'em hell!"
Judi's girl friends and boy friends never called me names. They were nice to me.
One day we moved to a bigger house. It was a few streets away. I got my own bedroom, but it was small. We had new neighbors. They were nicer. In the spring and summer, after dinner, Mommy put out dessert and coffee and the neighbors came over to our porch.
I had to go to a special High School for people with 4 cylinders. The High School was scary! Mommy still had to bring me there and pick me up. Somebody at the High School decided that I should learn a skill --tailoring and pressing. I didn't care about it. One day, while I was waiting for Mommy to come and get me, a bunch of very big boys came over to where I was waiting and started to push me. Then, I felt something in my back and I fell over. When Mommy came to get me, she said that I had been stabbed in the back, right through my jacket. Imagine that! I don't remember much about this, but I never went back to school again.
I still did not have any friends to play with on the new street, but nobody was mean to me. Judi was busy with school and after-school things. She had a lot of girl friends. Certain boys from other neighborhoods and schools would take her on dates. Sometimes a car full of girls and boys would come by and BEEP. Judi would go and jump into the car. It looked like all of the girls and boys in the car were laughing. If the car was a convertible, you could really hear them! These were not dates. Dates were special. A boy would have to knock on our door, come inside our house and say hello to Mommy and Daddy (and me, sometimes). Then, they were allowed to take Judi "out on a date". It was the rule.
Soon, a happy thing happened and a sad thing happened: I got a dog from Animal Friends. It was MY dog--a puppy. I never held a dog before. I was scared, but then I got used to it. I had to learn to hold my dog a special way so I would not hurt him. I named my dog Tawney 2. That was the good thing that happened.
The sad thing that happened was that Judi went away
to College. She was very happy to go away to College at
He came home once in a while.
One time when he came home, he let Tawney 2 out and he wasn't supposed to do that. The mailman told Mommy and me that Tawney 2 got hit by a car and was climbing our hill to say good-bye to me, but he died first. I never saw Tawney 2 again.
Our house was quiet without Judi and her friends and Tawney 2 and Daddy. It was a sad house. But, Judi graduated and moved back home. Girlfriends and boyfriends came over again.
Judi got engaged in College and she was in love. But, one day her boyfriend asked for his diamond ring back. He said that his family was afraid that they might have children that had only 4 cylinders. Judi cried for weeks and weeks. But, then she started to go on dates again.
Everybody had a job to go to. Mommy was a Secretary and a Travel Agent. Judi was a Teacher for the third grade. I went to Goodwill. It was just "OK" over there. I worked the Hand Mary part. Do you know what "Hand Mary" is? It is when the workers sit in a row. The first worker puts a piece onto something and then "hands" it over to the next worker who puts a different piece onto something and then "hands" it over to the next worker. That's why it is called "Hand Mary".
The people who watch over the workers at places like Goodwill are not always nice. They make us sit still when there is nothing to do. We are not supposed to talk to each other. And, it is never the right temperature. The important people have air conditioning or heat. The workers on the floor do not. That's not fair! And, we hardly make any money. There is something called minimum wage, but we do not get that, even though we work just as hard and for many hours. I guess that is because we only have 4 cylinders. We are different.
If we have to go to the bathroom, we have to ask. Sometimes I feel like a baby, even though I know that I am now 61 years old.
One day, Judi decided to move to another city. She said she had to start her life as a real grown-up.
I went to visit her with Mommy. Judi was very, very happy. She lived in a little apartment with a little kitchen and a little table. She had a lot of friends, there. Most of her friends were teachers, like her. They were nice to me. The boyfriends were nice, too. Nobody cared how many cylinders I had.
Judi would come home and
sometimes bring a girlfriend or boyfriend. Our house was full. In the summers, Judi went to
One day, Mommy said we should sell our house because it was "too much" and move to an apartment. The apartment was new. There were more cars and more people and more buses. That was good because one of the buses I had to take to go to work was right across the street.
I worked at a lot of places. There was Goodwill, Easter Seals, Vocational Rehab., and maybe more. But I always did the "Hand Mary". I was so tired of the Hand Mary. I did not talk much to the other people with 4 cylinders. I didn't like to look at them. Daddy always said that I didn't like to look at myself in the mirror. I remember that he wanted me to look in the mirror so that I could shave with an electric razor. I could not look in the mirror, but I tried to shave, anyway.
Daddy moved far away to live with another lady. When I shaved, I left whiskers on my face under my nose. Mother had to help with those whiskers. I could not make a tie for when I got all dressed up. Mother had to do it.
Most of the times that I got all dressed up were very special. Mother took me to lots of places for vacations and lots of Cruises. The Cruises were wonderful! There was a ton of delicious food to eat, all day long. That was the best part--the food. We went to the Midnight Buffet. Sometimes we sat with other people for breakfast, lunch and dinner. But, sometimes we sat at the Captain's Table. Food, food and more food! Imagine!
When we went to
After Judi lived in her small apartment for a long time, she came back home to my city because she did not feel well. Mother found an apartment for her right across the street from OUR apartment. And, so me and Mother and Judi and sometimes Nana got into Mother's car and went out to dinner or shopping. That was fun, except that Nana was not nice to me. She made Mother feel bad, because Mother had a Big Dummy to take care of.
Way after Daddy left for good, Mother had a lot of boyfriends. But, they did not want to get married to her. They said that I would be in the way. But, then, Mommy met a special man. He would come over every week for dinner and then he would take her out on a date every week. They went to important places and Mother got all dressed up. He was very nice to Mother. He was nice to me.
But, he did not marry Mother. He made her cry. Mother said it was because of me. But I was not in his way. Mother cried all the time. She said he broke her heart.
A good thing happened. I got a brother-in-law. Judi got married to a nice man. They went on a honeymoon. When they came back, Judi moved into his house. It was not far away but it was a little house. They came to visit us and have dinner with us lots of times. I liked Mike a lot.
One day a big surprise happened. Judi had a baby. Mother and I went to the hospital. The baby was very, very, very small. Mother called the baby her piece of gold. I was the Uncle. Imagine! I was special, now.
When the baby came home from the hospital, I learned how to hold her. I learned a special way to hold her head. I had to be gentle. I was afraid. But, then it was OK.
The apartment Mother and I lived in was too much, again. We moved into the same building that Nana lived in. I did not want to move to where Nana was. I did not want to be called a Big Dummy.
It was a Senior Citizen Building. The people there were old. They did not like me. They whispered to each other when they saw me. Some of them were not nice people. They were like a lot of Nanas. They did not like Mother either and were very angry at her. They did not want a person with only 4 Cylinders.
Mother and Nana got mad at each other a lot because Nana made Mother feel bad. When Mother and Nana would not talk to each other, Mother would send me in the elevator to Nana's apartment with a special message. Then, Nana would send me back to Mother with another message. I sure went up and down a lot!
When Judi and Mike and their baby girl visited me, they would see Nana, too. I wanted to go with them. Nana was happy to see Judi and Mike and the baby. But Nana always said "What did you bring HIM for?"
The baby girl got bigger and bigger. Her name was Erica. She said a lot of words and walked and told long stories. The people in the building said she was smart. People never called her a Big Dummy. She had all of her cylinders.
She went to school and learned a lot of things. She did not have trouble with numbers.
Mother made me join the Community Center and be in a special group so I could have friends. I did not like the friends. I did not like to look at them. I was in a Play and people clapped when the Play was over.
The people in the Senior Citizen Apartment did not want to let me play BINGO with them, but Mother yelled at them. I played BINGO and won. But, the people still would not talk to me. I do not think the old ladies had as many cylinders as me.
The Apartment Manager was a nasty witch. She didn't like when I came down to the Lobby, like everybody else did.
When my niece was 9 years old, Judi and Mike took her to live very far away from me and Mother. Mike got transferred. I was empty, again.
Judi and Mike built a big house. When Mother and I came to visit, we could not believe how huge the new house was! There were lots of rooms. The new furniture smelled new. They took their dog, Lenni, with them. Mother loved Lenni very much. Mother bought Lenni squeaky toys for her Birthday and Chanukah.
Nana was very old and went to the hospital. She died. Judi and Mike came to the funeral. A lot of people came. Nana was in her coffin. It was the coffin she picked out when Mother and Nana and I went to pick out our coffins. I saw some cousins. They were mostly mean to me. I didn't like them. Mother looked at Nana in the coffin for a long time and said: "Thanks for the good times." Then she walked away.
Right after Nana died, Daddy died in
Then, Mother got sick. She had Cancer. It was not good. Judi and Mike came to visit a lot. It took them 2 days to drive here and 2 days to drive back. They stayed for a long time. Each time they came, Mother was more sick. There were many things to do.
My job was to help shop for the food. Mother wanted to eat strange foods. Mike and Judi took me to the Bank. I had to sign papers. They took me to Social Security. I had to sign more papers.
We had meetings with lots of new people who talked about things that I did not understand.
There were strange people in the Apartment. They were helpers. (Caretaking Staff provided by the County). A lady came to visit from an Agency (Children's Aid Society). Her name was Pat. She asked me what I liked to do. She promised to take me to a lot of fun places. She made me smile. I remember that she did not take me to any fun places. She did not do what she promised. The new men (Male Caretaking Staff) came each week and took me out of the apartment for a little bit. They were OK.
The lady and men told me not to be afraid and that everything would be exactly the same if Mother got real, real sick. They told me to tell someone right away if Mother turned white. They showed me how to put my face near Mother's nose. They told me that if I felt air coming out of Mother's nose, that was good. If I did not feel the air, that was not good. I would have to go and get someone to help. I could dial 911.
After Judi and Mike took a long ride to come here again and then went back to where they lived, I saw Mommy's skin. It looked white. I called Judi. She told me to feel Mother's air. She told me to hurry and ask the neighbors for help. I went into my hall and I saw a lot of neighbors. I asked them to help me. They said NO. I went to a different hall. The neighbors would not help me. No one helped me. I felt for the air. I went to a different hall. I knocked on lots of doors.
I was getting tired. Judi was still on the telephone. She was talking very, very loud and fast at me. I hung up on her. I called 911. Judi called back and I got the phone. The 911 men knocked on our door. They said: We are here to pick up the dead body. Mother sat up. But I'm not dead, she said. I said: YES YOU ARE!
Imagine! I went to all that trouble and she wasn't even dead.
Then, Mike and Judi drove here to help again. They stayed for more than a whole week. They tried to help me and Mother. I did not have a good time. They called the Bank that Mother and I went to and made a special arrangement for Mother. They sent me to the bank with a piece of paper and a Bag. The paper was a Withdrawal Slip. The Bank gave me $600.00, like Judi asked. But, when I got home, Judi was very angry. There was only $200 in the bag. Some bad person cheated me. But, I came straight home from the Bank like I promised. After that happened, the man who gave me the $600 that turned into $200.00 got transferred to another Bank. We never found the money that was missing.
Mother was asking for Mike to go and get her strange food. He always did what she asked. When he brought her the food, she would make a face and not eat it.
Judi and Mike left because they could not leave my niece, Erica, too long. My niece stayed at her girl-friend's house when Judi and Mike drove up here.
Right after Judi and Mike left, a lot of people came into my apartment. Some of them took Mother away. Some of them took me away. One of them was that lady, Pat, who said she was going to take me to a lot of places to have fun, but never did.
The place she took me to was not a good place. It was called a Group Home. When I got to the Group Home, a man who was the boss of the home told me to go to a room. It was small. He told me to sit on the bed. There was no TV in my room. There was no desk. There was a tiny closet, but I could not hang up my clothes. There were no hangers. There was nothing to do. I just had to sit on the bed. I was scared.
I could not sleep. A boy in another room made loud noises all night long. I was scared.
I did not want to eat in the dining room. I was hungry but I did not want to eat. The noisy boy came and sat down. The boss had to help him sit down. He was still making sounds. Another boy came to sit but he was in a wheel chair. He had a funny kind of hat on his head. The hat had a strap. He could not talk right. His tongue was sticking out. The boss tried to feed him but it was a mess.
And, then, the boss left and a new boss came in. I was very scared. I did not want to just sit on the bed every day and go to the dining room table. I could see the noisy boy in his room, rocking back and forth.
There was a telephone in the hall, but I was not allowed to touch it. It was a rule. I was shaking very hard.
The telephone rang and the boss told me to come and talk on it. It was Judi. She said: Mommy died. I said: Oh my G-d, oh my G-d, oh my G-d. I said: Get me out of here, get me out of here! I was screaming: Get me out of here!
Judi promised she would come right away and get me out. In a couple of days, Judi and
Judi was crying: "Oh my Mommy. My poor Mommy." Mike was holding her. They said that there was a lot to do. We had to get dressed up and go to the Funeral Home. Mother was in her coffin. She looked the same. Mother's friends were there. Judi's friends were there.
After the Funeral Home, we got into a Black Limo with cars behind us. But the Limo driver could not find the Cemetery. It was far away in a place that had a lot of old streets and a lot of hills. He got directions from a Gas Station, and all of the cars had to follow us again.
At the Cemetery, the ground was wet and we had to walk up a hill. There were gravestones. I saw Nana's gravestone. A man read a prayer. The coffin went into a hole in the ground. Judi cried. I slipped on the wet grass and fell over. People looked at me. We had to put stones on the grave.
All of the cars went back to the apartment. We had to wash our hands and go into the apartment. I put on a black ribbon and wore it for a month. There was a lot of food and snacks. It was delicious! It was a party. The people laughed. They stayed a long time. The next day, there was more food. Other people came to the party. The food was delicious. People came with trays of food. I had a corned beef sandwich.
We had to work very hard. Judi packed Mother's clothes in garbage bags and told the trucks to come. A truck came and took away all of the garbage bags. A different truck came and took the furniture.
I threw away my things--all of them! I did not want them anymore. Mike said that I could not throw away my books. We packed them in boxes and took them to a library. It was a donation.
Nobody wanted to help us. We had to do everything. Imagine! The manager said I had to move to a smaller apartment. Judi and Mike and two men took my bed and Mother's dressers and my dresser and TV and tables and the couch and the chair and the lamps to my new apartment. There were more meetings with the lady who promised to take me places. She is the lady who took me away to the Group Home. She was going to help take care of me, now. I met the special helpers from Children's Aid Society. There were other meetings with new people. Some men came and took away Mother's car. We had to go to the Bank more times. We were tired.
Judi and Mike had to drive back to their town. I had my own apartment. I had special helpers. (County provided Staffers/Caretakers) Everything was the same. The helpers came in the morning. They made me breakfast and a sandwich for lunch. They took me in their car to work. They picked me up after work. They made dinner. They stayed until at night and left. I went to sleep. In the morning they came and made breakfast. But, the lady who took me to the Group Home and her helpers never took me to the places she promised. Every day was the same.
At night, in my bedroom, Mother would come and sit on the edge of my bed. She said that she loved me. She asked me if I was all right. I told her I was OK. Then she would leave. She came every night for a long time.
Judi called me every night. I called Judi and left a lot of messages. I asked the Operator to dial the numbers for me. I called movie stars. I called Norm from Cheers. I called Lou Grant. Judi said I was not allowed to call everyone long distance. It was expensive. I did not listen to her. I called a lot of people when the Operator helped me.
One day, the lady from Children's Aid Society (Pat) said that her boss (Nancy) wanted me to go to a Group Home. If I did not go to a Group Home, they would not help me anymore. I was scared. Judi had a big fight with them. They did not listen to her. Judi was mad. Another lady said I would have to go to a Group Home, too. (Sue M.). I did not like her. She chewed gum all the time and said nasty things to me.
Judi had to pay a lot of money to a special lawyer. The lawyer had to sit in a meeting with the people who wanted to put me in a Group Home. He didn't say too much. He was quiet. The meeting was short. I did not have to go to a Group Home. Judi said it was worth the money. It was more than $1,000.00.
But, Children's Aid Society and Sue M. did not help me anymore. A different group came and helped me, but sometimes they did not show up. Judi yelled at them. She said they had to show up every day because there was no food. There was no food because they kept the money. It was my money for my food.
One day, Judi called a place she found out about. It was called ARC Allegheny. She cried when she talked to them on the phone. One lady was Rochelle. The other lady was Jeannette. Judi told them about the Group Home and how much I was shaking. They said: We'll take him.
They had better helpers. There were different helpers each day. Sometimes a helper did not show up at my apartment. Sometimes the helpers smoked in my apartment. They were not allowed to smoke. They made me "fan the flames" when they smoked so the alarm would not go off.
Judi found out and told on them. One girl was fired. Old helpers left. New helpers came. They were called "Staff". Mike and Judi came to see me plenty. They took me out every day and I went to delicious restaurants. They bought me new clothes. I did not like to wear clothes more than a few times. I liked to throw away some of my clothes so I could get new ones. But, I did not throw away all of my clothes. They just would disappear. My record albums disappeared. My jackets disappeared. A lot of things disappeared--even things I wanted to keep.
Mike and Judi took me on vacations with them. It was fun. The food was delicious. I liked to fly on airplanes to visit them. That was wonderful. I had to take two airplanes. Judi made me wear cards pinned to my top. The cards had big writing on them. This was "just in case". Judi told everyone at the Airlines to look out for me. But, one time they forgot all about me.
I was on US Air. I had my big
card pinned to me that said my name and flight #. It said I had Special Needs and to help me. The
words were in very big letters. We landed in
I sure was mad! The Airplane to go home left without me. I had to wait a long, long time. When I got off the Airplane, my Staff was there, but my suitcase wasn't. I was crying. I was tired. I was hungry. I wanted my suitcase. I had new clothes in the suitcase. I had new movies in the suitcase.
A nice man brought the suitcase to my apartment in the morning. Judi talked to a lot of important people at USAir. Judi wrote letters to them. The next time I flew on USAir to see Judi and Mike, Judi said the ticket was Free. Imagine!
Everything was the same. The staff was ok. I saw the lady from Children's Aid Society who told me she would take me fun places but never did. Her name was Pat. She was now working at ARC Allegheny. That name was changed to Achieva. I was surprised to see her there. I had a lot of doctor appointments. Every day, a new doctor. I had Prostate Cancer. Judi explained it to me. It was OK. I was very cold at work. Everyone else was warm. I wanted to work with my jacket on. Judi called Achieva a lot of times and sometimes Pat would come and bring me home. I was so cold.
Judi wanted me to stay home from work, because soon I was going to get Cancer "treatment". But Pat said that I must keep my day as normal and stable as possible without changes. It was important. It was for my health.
Judi and Mike came to visit me again. Judi and Mike wanted to meet my Cancer Doctor. Judi told me that I would have 8 weeks of "external beam radiation" and shots in my stomach. I would be OK. And, Judi and Mike bought me brand new furniture so I would be comfortable whenever I rested on the couch.
It was 3 days until my radiation. Judi and Mike and me had a meeting in my apartment with Achieva. The lady from Achieva who said "We'll take him" was there and so was a man from Family Links. The lady's name was Jeanette. Jeanette said I had to go to a Group Home. Imagine! She was the lady who understood why I should NOT go to a Group Home! Mike and Judi and the man were not happy. Judi said No way! Mike said No way! I said No way!
Judi said a lot of things that morning. When she said that I was even in The Family Trust from Achieva, Jeanette whispered to the man: "See how much money they have in the Family Trust". (The Family Trust was written into my Will, with money to care and provide for Lee, after my demise.)
The next day, the man gave Judi a card with some man's name on it. He told Judi that what Achieva was trying to do was horrible--making me leave my own apartment and go to a Group Home right before my external beam radiation. It was "immoral". It was "unethical".
It was opposite of what Pat from Childrens Aid and Achieva said: Everything should be normal and stable.
When Judi and Mike went to their hotel to change clothes before they came to pick me up for dinner, Jeanette and Pat came to my apartment. They took me in their car to get an ice cream sundae. It was delicious. They said I would have fun at the Group Home. They said I should go to the Group Home. Pat promised I could do fun things there.
I guess there was not enough money in the Family Trust at Achieva, because they sure wanted me to go to a Group Home!
When they brought me back to my apartment, Judi said they tried to bribe me. She was mad at them and said: Lee is NOT going to a Group Home. He nearly had a Nervous Breakdown in one and YOU knew it! That's why you took him.
There was a lot of yelling. Judi said No way! Mike said No way. I said No way. So, I was not going anywhere that I did not want to go. After Judi and Mike drove back to their town, Achieva's Staff would not leave at like they were supposed to. Judi called and told them to get out. They said no. Judi told me to tell them to get out. I was afraid. She said: "Let me hear you tell them to get out. This is YOUR apartment". Everyone was screaming at everyone else. They left. I went to sleep.
Judi called Achieva and told
them to not upset me. She told them to please leave at . They were always supposed to leave at . A lady from Achieva got on the phone. It was Nancy who was Pat's Boss at Children's Aid Society, when Mother died. Imagine! She
followed Pat all the way to Achieva! Judi said it was strange that things were
just fine until Pat and
Judi and Nancy screamed at each
other. Judi said
The Achieva helpers would only help me for a month. They never told Judi why they wanted me to go to a Group Home. They never told the man from Family Links. They never told the Advocate from Disability Rights. But, I was not going.
I started my radiation and my stomach shots. I went to work. I was very cold or very hot. When I was cold, everyone else was hot.
Soon, another group of helpers came. They were from ARC Human Services. I think they had big mouths and did not do a good job. They lied to my sister about a lot of things. Sometimes they left me for a long time and went out. They made up stupid stories about where they were.
One of their boy helpers (Male Staffer) had a girl friend. The girl friend took me in her own car. She was not allowed to do that. She wasn't even the helper! (the Staffer) She told me, "Your sister don't want you." She hit my legs, too. That was an "incident". There was an investigation.
A man asked me questions. I said what happened. The helper did not help me anymore, but he helped other people (Mentally Challenged) somewhere else.
The helpers from Arc Human Services made medication errors, too.
The helpers from ARC Human Services started to sleep all night at my apartment and I was not allowed to tell my sister.
Read what happens to those who try to protect their Mentally Challenged loved ones from "The System"
After ARC went away, new helpers came from another Agency, Step by Step. They do the same things. They stay over night. We have a Fade Plan. They leave while I am asleep. They come back soon. They write in a book. If I do not leave the building or eat trouble foods during the night, the helpers will not have to stay all night long. I have a small fridge that is locked. The trouble foods are in there. I have a regular fridge that is not allowed to be locked. If I want, I can get foods from there.
I saw a Nutritionist. I must lose weight. Sometimes I ride a bike at my helper's Gym. The bike hurts my knees. My helper gives me a pill.
Everything is not the same. It is OK. I have a new PCP, since Dr. Wein quit me. The second and third Apartment Manager left. My niece Erica divorced her family. Isn't that something? Judi says that she cries for Erica every night. I don't think I have a niece anymore. I don't know. I miss Erica, too. Imagine! How can she divorce us?
I am OK with Step by Step. The helpers are nicer. But, I am mad at my sister because she will not let me have pop at restaurants.
As you can see from my brothers own account, those with mental challenges are easily victimized, often ostracized and certainly taken advantage of --sometimes by the very persons and agencies that have been put in place to protect them. What is worse, they have no voice and cannot advocate for themselves. In Lee's case, relative to his having unwanted staff in his apartment over night, his own wishes--signed, sealed and delivered--were not honored.
The Mentally Challenged are at the mercy of those who are in positions of trust but who lie, steal, cheat, manipulate, put greed above their clients' needs and who, in reality, detest advocates and activists. They only pretend to want family involvement.
We have learned this the hard way. You can't fight City Hall!